How Do You Know? 

Often, people will ask me how I knew I had Chronic Kidney Disease. I didn’t have any symptoms although I did suffer from high blood pressure, which is the second most common cause of CKD. Well, how did I know then?

When I changed doctors to one closer to my home, she had her own set of thorough tests completed for me as a new patient. One of them was the eGFR [estimated Glomerular Filtration Rate]. She saw that 39% and had me in a nephrologist’s office the next day. The National Kidney Foundation explains why:  

“When your kidneys are working well, they filter out wastes and excess fluid that become part of the urine your body makes each day. When kidneys aren’t working well, you do not remove enough wastes and fluids to keep you healthy. You also cannot make important hormones for your blood and bones. Your GFR number is an estimate of how well your kidneys are working and keeping you healthy. If your GFR number is low, your kidneys are not working as well as they should. Early detection will allow for early treatment. Early treatment may keep kidney disease from getting worse.” 

Remember those old television commercials that announced, “But wait! There’s more.” That applies here, too. In addition to the blood test for eGFR, I needed a urine test. Thank you to The American Kidney Fund for revealing the necessity of this: 

“When your kidneys are damaged, they may let protein leak into your urine. This can be one of the earliest signs of kidney disease. To check for protein in your urine (called proteinuria), your doctor may suggest a urine test. There are two types of urine tests your doctor may use. 

Dipstick urine test 

A dipstick urine test tells your doctor if there is protein in your urine. Your doctor may test your urine in the office or ask you to bring a sample from home. If your first dipstick urine test shows protein in your urine, ask your doctor when you should be tested again. Also ask if a urine albumin-to-creatinine (UACR) test is right for you. 

Urine albumin-to-creatinine ratio (UACR) 

A UACR test tells your doctor how much albumin is in your urine. Your doctor will test your urine to see how much albumin (a type of protein) and creatinine (a kind of waste) are in it. Your doctor will compare these results to figure out your UACR. A normal UACR is less than 30mg/g. If your UACR is more than 30 mg/g, ask your doctor when you should be tested again. Also ask your doctor if you should have an eGFR test.” 

These two tests, the former gold standard for assessing CKD, seem to be falling out of favor. You see, the blood test relies on race as one of its elements. I was taught that was because Afro-Americans have a denser muscle mass. Okay, that seemed acceptable. It also seems that this is no longer acceptable. I understand that racism must be combatted, but what about the science of denser muscle mass? If I’m correct, that’s one of the reasons Cystatin-C is slowly becoming the norm in CKD testing, but certainly not the only one.  

What is Cystatin-C? Let’s find out together. The most easily understood explanation I found was. The Medical Center of the University of Rochester’s

“Your body makes cystatin C constantly, and the protein is found in different fluids, including blood, spinal fluid, and breast milk. When your kidneys are healthy, they filter cystatin C out of the blood so it can be excreted in your urine. 

This is a fairly sensitive blood test to look at your kidney health. Cystatin C can be used to calculate your glomerular filtration rate (GFR). Your healthcare provider can use this to see how well your kidneys are working and if there is a problem. It can also be used to check the progress of your disease, if you have kidney problems.” 

I wasn’t sure enough about this being the best test for CKD, so I turned to Lab Tests Online to see what they had to say. 

“Because cystatin C levels fluctuate with changes in GFR, there has been interest in the cystatin C test as one method of evaluating kidney function. Tests currently used include creatinine, a byproduct of muscle metabolism that is measured in the blood and urine, blood urea nitrogen (BUN), and eGFR (an estimate of the GFR usually calculated from the blood creatinine level). Unlike creatinine, cystatin C is not significantly affected by muscle mass (hence, sex or age), race, or diet, which has led to the idea that it could be a more reliable marker of kidney function and potentially used to generate a more precise estimate of GFR. 

While there are growing data and literature supporting the use of cystatin C, there is still a degree of uncertainty about when and how it should be used. However, testing is becoming increasingly more available and steps are being taken toward standardizing the calibration of cystatin C results.” 

Ah, I see, race need not be taken into account. Hmmm, neither does sex, age, or diet. This almost sounds too good to be true. 

Whoops! I haven’t reminded you what the BUN [blood urea nitrogen] test mentioned above is. My longtime standby, The Mayo Clinic clarifies: 

“A common blood test, the blood urea nitrogen (BUN) test reveals important information about how well your kidneys and liver are working. A BUN test measures the amount of urea nitrogen that’s in your blood. 

Here’s how your body typically forms and gets rid of urea nitrogen: 

Your liver produces ammonia — which contains nitrogen — after it breaks down proteins used by your body’s cells. 

The nitrogen combines with other elements, such as carbon, hydrogen and oxygen, to form urea, which is a chemical waste product. 

The urea travels from your liver to your kidneys through your bloodstream. 

Healthy kidneys filter urea and remove other waste products from your blood. 

The filtered waste products leave your body through urine. 

A BUN test can reveal whether your urea nitrogen levels are higher than normal, suggesting that your kidneys or liver may not be working properly.” 

Considering the information uncovered in today’s blog, I don’t think I’d mind at all if my nephrologist started to use the Cystatin-C method to test my eGFR. How about you? 

Until next week, 

Keep living your life! 

What About My Kids?

It’s May already. I don’t know if it’s lockdown that’s making the months seem to fly by or if it’s that I don’t look at the calendar very often. Either way, I know my first born’s birthday is May 6th. Happy birthday, my lovely Nima. By the way, Nima is Tibetan for the sun and my world did revolve around her just as our planet revolves around the sun. 

But when I was diagnosed with Chronic Kidney Disease way back in 2008, I became a bit nervous. Was this something I could conceivably [nice play on words, huh?] have passed on to her or her younger sister… and now that sister’s son? You’ve probably figured out that this mother worried about her children became the world’s best researcher overnight. Hmmm, that was 13 years ago. I wonder what the current research tells us about this. 

According to the University of Michigan’s Michigan Medicine, over 60 types of kidney disease can be inherited. These include: 

“Autosomal Dominant Polycystic Kidney Disease (ADPKD): The most common inherited kidney illness, ADPKD causes cysts to form on the kidneys. It occurs in about one in 800 people, and is passed down from parent to child through generations. Major health problems from ADPKD usually occur in adulthood, with more than 30,000 people in the U.S. each year suffering kidney failure as a result.  

Autosomal Recessive Polycystic Kidney Disease (ARPKD): This condition is also characterized by cysts, and affects about 1 in 20,000 people. ARPKD generally causes symptoms in early to late childhood. Learn more about dominant and recessive polycystic kidney disease on the PKD Foundation website. 

Thin Basement Membrane Disease 

Gitelman and Bartter Syndromes 

Collagen-related kidney diseases including Alport Syndrome: Learn more about Alport Syndrome on the Alport Syndrome Foundation website.  

Lowe Syndrome: Learn more about Lowe Syndrome on the Lowe Syndrome Association website. 

Hereditary Interstitial Kidney Disease: Gout associated inherited kidney diseases 

Tuberous Sclerosis 

Cystinosis: Learn more about Cystinosis on the Cystinosis Research Network website. 

Fabry Disease 

Nephronophthisis” 

While I’ve written about many of these, there are some that are new to me – and possibly to you – so I’ll write just a little bit about each of those. Also note that some of the websites are linked for you. 

Thank you, UNC School of Medicine‘s Kidney Center for the following: 

“TBM disease (also known as benign familial hematuria and thin basement membrane nephropathy) is, along with IgA nephropathy, the most common cause of blood in the urine without any other symptoms. The only abnormal finding in this disease is a thinning of the basement membrane of the glomeruli (filters) in the kidneys. Most patients with TBM disease maintain normal kidney function throughout their lives.” 

I haven’t written about Gitelman Syndrome. Luckily, there’s NORD to help us out here: 

“Fundamentally, like Bartter’s syndrome, Gitelman syndrome is a salt wasting nephropathy. The symptoms and severity of the disorder can vary greatly from one person to another and can range from mild to severe. For unknown reasons, the onset of symptoms is frequently delayed until the second decade of life. Symptoms and severity can even vary among members of the same family. Common symptoms can include episodes of fatigue, muscle weakness, and muscle cramps sometimes accompanied by gastrointestinal problems such as abdominal pain, nausea and vomiting. Some individuals may need to urinate frequently and will pass a large volume of urine (polyuria).” 

I turned to an old reliable favorite, MedlinePlus for information about Lowe Syndrome: 

“Kidney (renal) abnormalities, most commonly a condition known as renal Fanconi syndrome, often develop in individuals with Lowe syndrome. The kidneys play an essential role in maintaining the right amounts of minerals, salts, water, and other substances in the body. In individuals with renal Fanconi syndrome, the kidneys are unable to reabsorb important nutrients into the bloodstream. Instead, the nutrients are excreted in the urine. These kidney problems lead to increased urination, dehydration, and abnormally acidic blood (metabolic acidosis). A loss of salts and nutrients may also impair growth and result in soft, bowed bones (hypophosphatemic rickets), especially in the legs. Progressive kidney problems in older children and adults with Lowe syndrome can lead to life-threatening renal failure and end-stage renal disease (ESRD).” 

Cystinosis sounded somewhat familiar, but then I thought perhaps it was because it starts with “cyst.” It turns out I was wrong, as the Cystinosis Foundation explains: 

“Cystinosis is the most common inherited cause of Fanconi syndrome, a renal tubular disease characterized by the inability of the kidneys to reabsorb electrolytes, amino acids, proteins and glucose from the urine. This leads to the loss of large volumes of urine, salts, minerals and nutrients. Laboratory testing may reveal severe electrolyte abnormalities, including low potassium (hypokalemia), low phosphorus (hypophosphatemia) and low bicarbonate (metabolic acidosis). Fanconi syndrome leads to growth failure, excessive thirst (polydipsia), excessive urination (polyuria), and soft bones (rickets). Treatment of Fanconi syndrome requires replacing lost electrolytes such as potassium, phosphorus and bicarbonate. 

Without treatment, children with cystinosis progress to end-stage kidney failure by an average age of 8-10 years. Even with treatment, many children develop kidney failure in adolescence. In the past, this meant death. Today patients can be treated with dialysis and kidney transplantation. Even with a transplant, however, the disease continues to affect every other organ in the body.” 

I think we have room for one more, so let’s look at Nephronophthisis. A site that is new to me, The Weizmann Institute of Science’s Malacards, explained succinctly: 

“It is characterized by inflammation and scarring (fibrosis) that impairs kidney function. These abnormalities lead to increased urine production (polyuria), excessive thirst (polydipsia), general weakness, and extreme tiredness (fatigue). In addition, affected individuals develop fluid-filled cysts in the kidneys, usually in an area known as the corticomedullary region. Another feature of nephronophthisis is a shortage of red blood cells, a condition known as anemia. Nephronophthisis eventually leads to end-stage renal disease (ESRD), a life-threatening failure of kidney function that occurs when the kidneys are no longer able to filter fluids and waste products from the body effectively. Nephronophthisis can be classified by the approximate age at which ESRD begins: around age 1 (infantile), around age 13 (juvenile), and around age 19 (adolescent).” 

I got so involved with these diseases, that I almost forgot about CKD. It turns out that it may run in families, just as hypertension and diabetes may. While hypertension runs in my family, diabetes runs in my children’s father’s family. That means, I’m sorry to say, that they are at considerable risk of CKD since hypertension and diabetes are the two main causes of CKD. Nuts! 

Until next week, 

Keep living your life! 

Dying is Not the End

Unbeknownst to me until I started researching kidney transplant, there is a National Donor Day. According to DonateLife

“Observed every year on February 14th, National Donor Day is an observance dedicated to spreading awareness and education about organ, eye and tissue donation. By educating and sharing the Donate Life message, we can each take small steps every day to help save and heal more lives, and honor the donor’s legacy of generosity and compassion. National Donor Day is a time to focus on all types of donation—organ, eye, tissue, blood, platelets and marrow. Join us by participating in local events, sharing social media messages and encouraging others to register as donors. 

National Donor Day is also a day to recognize those who have given and received the gift of life through organ, eye and tissue donation, are currently waiting for a lifesaving transplant, and those who died waiting because an organ was not donated in time.” 

I would suspect it’s no accident that this is celebrated on Valentine’s Day. 

On to cadaver donor, as promised last week. I’ve been perusing kidney transplant social media sites this past week and found lots of questions by those considering, and meeting the conditions for, a kidney transplant. A number of them wanted to know the difference between a cadaver transplant and a living donor transplant. It’s not as obvious as you might think. 

A cadaver transplant comes from a cadaver, or dead body, as you’ve probably figured out. Sometimes it’s called a deceased or non-living donor transplant. But what are the guidelines for which kidneys are useable and which are not?  Let’s see if the Donor Alliance can help us out with some general background information. 

“Kidney allocation is heavily influenced by waiting time, or how long the recipient has been listed for transplant. Fortunately there is a bridge treatment for many in end-stage renal disease, called dialysis, which allows candidates to survive while awaiting a transplant. In addition, blood type and other biological factors, as well as body size of the donor and recipient are always key factors. Medical urgency and location are also factors but less so than other organs as they [sic] kidney can remain viable outside the body for 24-36 hours under the proper conditions. 

The waiting list is not simply a list of people who are eligible for transplant. It’s a dynamic, complex algorithm based on carefully developed policy that ensures scarce organs are allocated to recipients as fairly and accurately as possible within highly constricted time frames.” 

Okay, so one guideline for a cadaver kidney is that it can remain alive outside the body for 24-36 hours. That seems to indicate, as mentioned above, that the location of both the donor and recipient are important, even though that’s fairly long for cadaver organs. 

I was surprised to learn that there are different types of deceased donor transplants.  

“A deceased donor is an individual who has recently passed away of causes not affecting the organ intended for transplant. Deceased donor organs usually come from people who have decided to donate their organs before death by signing organ donor cards. Permission for donation also may be given by the deceased person’s family at the time of death. 

A deceased donor kidney transplant occurs when a kidney is taken from a deceased donor and is surgically transplanted into the body of a recipient whose natural kidneys are diseased or not functioning properly. 

Types of Deceased Donor Organs 

There are several different types of deceased donor kidneys. These names are used to describe certain anatomic, biological, and social features of the donor organs. You may decide not to receive any or all of these organs, and you may change your mind at any time. 

Standard Criteria Donors (SCD): These kidneys are from donors under age 50 and do not meet any of the criteria below that are assigned to Expanded Criteria Donors. 

Expanded Criteria Donors (ECD): These organs come from donors over age 60 or age 50-59 that also have at least two of the following criteria – history of high blood pressure, the donor passed away from a CVA (stroke) or had a creatinine higher than the normal laboratory value (1.5 mg/dl). About 15-20% of the donors in the United States are Expanded Criteria. 

Donation after Cardiac Death (DCD): These donors do not meet the standard criteria for brain death. Their hearts stopped before the organs were removed. Donation after Cardiac Death occurs when continuing medical care is futile, and the donor patient is to be removed from all medical life-sustaining measures/supports. 

Double Kidney Transplants (Duals): During the year we may have access to donors that are at the more extreme limit of the Expanded Criteria Donor. Research has found that using both of these kidneys in one recipient is preferable to only one. 

Donors with High-Risk Social Behavior: These donors are individuals who at some point in their life practiced high-risk behavior for sexually transmitted disease, drug use, or were incarcerated. All of these donors are tested for transmissible disease at the time of organ recovery. You will be informed of the high-risk behavior. 

All of these kidneys supply suitable organs for transplant, and all are expected to provide good outcomes with good organ function. However, the outcomes may be 5-10% less than that achieved with Standard Criteria organs. Accepting a kidney that is not considered Standard Criteria may substantially reduce your waiting time.” 

Thank you to one of my favorite sources, the Cleveland Clinic for this information. 

While this is not all the information available about deceased kidney donors, I think it’s important to know how to register to be a donor. I registered when I had my first child. Her birth had gotten me to thinking about helping others. 

The Health Resources and Service Administration’s OrganDonor.gov provides the easiest two ways: 

“Signing up on your state registry means that someday you could save lives as a donor—by leaving behind the gift of life. When you register, most states let you choose what organs and tissues you want to donate, and you can update your status at any time.” 

There is a download for your state on their site. The other way is: 

“…in-person at your local motor vehicle department.” 

You know which I hope you choose in the time of Covid. 

I chose to donate my body to science. MedCure is the organization that clinched my decision for me. 

“Everything we know about the human body comes from studying whole body donors. At MedCure, we connect you or your loved ones to the physicians, surgeons, and researchers who are continuing this vital work. Their discoveries and innovations help people live longer, make treatments less invasive, and create new ways to prevent illness or disease. 

We are constantly overwhelmed by the incredible generosity and selflessness of our donors.  MedCure honors their gifts by covering, upon acceptance, all expenses related to the donation process. These costs include transportation from the place of passing, cremation, and a certified copy of the death certificate, as well as the return of cremated remains to the family or a scattering of the ashes at sea. By request, we can provide a family letter that shares more detailed information on how you or your loved one contributed to medical science.” 

Whichever you chose, thank you for saving lives one way or another. 

Until next week, 

Keep living your life! 

National Kidney Month

The world has acknowledged World Kidney Day. We have had walks in many countries. We have had educational seminars in many countries. We have posted in many countries. All to bring awareness to what our kidneys do for us and the worldwide challenge of kidney disease. Thursday, March 11th, was World Kidney Day. 

But today is Monday. And you know what? It’s still March, National Kidney Month, here in the United States. Each year, I write about National Kidney Month, just as I write about World Kidney Day. Interesting tidbit: the Philippines also has a National Kidney Month which they celebrate in June. I’ll only be writing about the U.S.’s National Kidney Day. 

 As usual, let’s start at the beginning. What is National Kidney Month? Personalized Cause has a succinct explanation for us. While I’m not endorsing them since I usually try to avoid endorsements, I do want to let you know they sell the green ribbons and wristbands for kidney disease awareness that you’ll probably be seeing hither and yon all month. 

“National Kidney Month, observed in March and sponsored by the National Kidney Foundation, is a time to increase awareness of kidney disease, promote the need for a cure, and spur advocacy on behalf of those suffering with the emotional, financial and physical burden of kidney disease. The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease for hundreds of thousands of healthcare professionals, millions of patients and their families, and tens of millions of Americans at risk. 

National Kidney Month is a time to increase awareness about the function of the kidneys and kidney disease. Kidneys filter 200 liters of blood a day, help regulate blood pressure and direct red blood cell production. But they are also prone to disease. One in three Americans is at risk for kidney disease due to diabetes, high blood pressure or a family history of kidney failure. There are more than 26 million Americans who already have kidney disease, and most do not know it because there are often no symptoms until the disease has progressed.” 

That, of course, prompted me to go directly to the National Kidney Foundation’s information about National Kidney Month. This is what I found: 

March 1, 2021, New York, NY — In honor of National Kidney Month which starts today, the National Kidney Foundation’s (NKF) national public awareness campaign, “Are You the 33%?” enters a new phase focusing on the connection between type 2 diabetes (T2D) and kidney disease, also known as chronic kidney disease (CKD). NKF urges everyone to find out if they’re the 1 in 3 at risk for developing kidney disease by taking a one-minute quiz at MinuteForYourKidneys.org

Diabetes is a leading risk factor for developing kidney disease. Over time, having high blood sugar from diabetes can cause damage inside your kidneys. But it doesn’t have to end up this way; because with careful control of glucose (sugar) levels, there is evidence that you can prevent kidney disease in people with diabetes. 

Award-winning actress, Debbie Allen joined the campaign as the T2D Campaign Celebrity Spokesperson in February, Black History Month, to help promote awareness of diabetes as a leading cause for developing chronic kidney disease. Allen has a family history of diabetes and was recently diagnosed with pre-diabetes.” 

Indeed, the National Kidney Foundation has a lot to offer with peer mentoring, community, an information helpline, and transplant, palliative care, dialysis, kidney donation, and research information. 

The American Kidney Fund [AFK] joins in National Kidney Month with their form to pledge to fight kidney disease. I signed up; you can, too, if you’d like to. I’m not comfortable with the word “fight,” but I’m not going to let that stop me from spreading awareness of the disease.  

If you’re inclined to donate to the cause, the American Kidney Fund is doubling your donation this month. They also offer an advocacy program, as well as free screenings, activity days, financial assistance, and kidney education in addition to transplant and kidney donation information, 

The National Institute of Diabetes and Digestive and Kidney Diseases [NIDDK], part of the National Institutes of Health [NIH], celebrates National Kidney Month with the following post and offerings. 

“Follow these healthy lifestyle tips to take charge of your kidney health. 

  1. Meet regularly with your health care team. Staying connected with your doctor, whether in-person or using telehealth via phone or computer, can help you maintain your kidney health. 
  1. Manage blood pressure and monitor blood glucose levels. Work with your health care team to develop a plan to meet your blood pressure goals and check your blood glucose level regularly if you have diabetes. 
  1. Take medicine as prescribed and avoid NSAIDs like ibuprofen and naproxen. Your pharmacist and doctor need to know about all the medicines you take. 
  1. Aim for a healthy weight. Create a healthy meal plan and consider working with your doctor to develop a weight-loss plan that works for you. 
  1. Reduce stress and make physical activity part of your routine. Consider healthy stress-reducing activities and get at least 30 minutes or more of physical activity each day. 
  1. Make time for sleep. Aim for 7 to 8 hours of sleep per night. 
  1. Quit smoking. If you smoke, take steps to quit. 

It may seem difficult, but small changes can go a long way to keeping your kidneys and you healthier for longer. 

Learn more about managing kidney disease 

As for me, I’ll continue to blog my brains out [just as I declared in last week’s blog] until more and more people are aware of the kidneys and kidney disease. Same goes for the Instagram, Facebook, Twitter, Pinterest, and LinkedIn accounts, and the SlowItDownCKD book series. It’s all about kidney disease. 

Until next week, 

Keep living your life! 

World Kidney Day, 2021

Will you look at that? The world keeps moving on, pandemic or not. And so, I recognize that Thursday of this week is World Kidney Day. In honor of this occasion, I’ve chosen to update whatever I’ve written about World Kidney Day before … now sit back and enjoy the read. 

…World Kidney Day? What’s that? I discovered this is a fairly new designation. It was only fifteen years ago that it was initiated. 

 According to http://worldkidneyday.org

“World Kidney Day is a global awareness campaign aimed at raising awareness of the importance of our kidneys.” 

Sound familiar? That’s where I’m heading with What Is It and How Did I Get It? Early Stage Chronic Kidney DiseaseSlowItDownCKD 2011SlowItDownCKD 2012

SlowItDownCKD 2013SlowItDownCKD 2014SlowItDownCKD 2015;

 SlowItDownCKD 2016SlowItDownCKD 2017

SlowItDownCKD 2018SlowItDownCKD 2019the soon to be published SlowItDownCKD 2020; Facebook; Instagram; LinkedIn; Pinterest; Twitter; and this blog. We may be running along different tracks, but we’re headed in the same direction. 

According to their website,  

The International Society of Nephrology (ISN) is a global professional association dedicated to advancing kidney health worldwide since 1960 through education, grants, research, and advocacy.  

We do this for all our stakeholders by:  

BRIDGING THE GAPS of available care through advocacy and collaborations with our global partners  

BUILDING CAPACITY in healthcare professionals via granting programs, education and research  

CONNNECTING OUR COMMUNITY to develop a stronger understanding of the management of kidney disease.  

The ISN, through its members and in collaboration with national and regional societies, engages 30,000 health professionals from across the globe to reduce the burden of kidney diseases and provide optimal health care for patients.”  

If you go to Initiatives on the ISN’s website, you’ll find the following: 

“World Kidney Day (WKD) is a joint initiative between the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF). 

World Kidney Day is a global campaign that aims to raise awareness of the importance of our kidneys to overall health and to reduce the frequency and impact of kidney disease and its associated health problems. 

World Kidney Day is an annual event that takes place worldwide. Hundreds of organizations and individuals launch initiatives and events on WKD to help raise awareness of kidney disease.” 

Now we just need to know what the International Federation of Kidney Foundations (IFKF) has to say about themselves: 

“Vision 

Better kidney health for all. 

Optimal care for people affected with Kidney Disease or Kidney Failure. 

Mission 

Leading a worldwide movement to 

Promote better kidney health with primary, secondary and tertiary preventive measures. 

Promote optimal treatment and care so as to maximize the health, quality of life, and longevity for people with or at high risk for developing Kidney Disease or Kidney Failure.” 

As of July of last year, the name has been changed to the International Federation of Kidney Foundations – World Kidney Alliance (IFKF-WKA) 

Photo by Karolina Grabowska on Pexels.com

Back to World Kidney Day’s website now, if you please. 

“The World Kidney Day Steering Committee has declared 2021 the year of ‘Living Well with Kidney Disease’. This has been done in order to both increase education and awareness about effective symptom management and patient empowerment, with the ultimate goal of encouraging life participation. Whilst effective measures to prevent kidney disease and its progression are important, patients with kidney disease – including those who depend on dialysis and transplantation – and their care-partners should also feel supported, especially during pandemics and other challenging periods, by the concerted efforts of kidney care communities.” 

Their site offers materials and ideas for events as well as a map of global events. Prepare to be awed at how wide spread World Kidney Day events are. 

Before you leave their page, take a detour to Kidney FAQ (Frequently Asked Questions) on the toolbar at the top of the page.  You can learn everything you need to know from what the kidneys do to what the symptoms (or lack thereof) of CKD are, from how to treat CKD to a toolbox full of helpful education about your kidneys to preventative measures. 

Just as this year’s, the previous World Kidney Day themes were all educational and much needed by the CKD community. 

“2020 Kidney Health for Everyone Everywhere – from Prevention to Detection and Equitable Access to Care 

2019 Kidney Health for Everyone, Everywhere 

2018 Kidneys & Women’s Health. Include, Value, Empower 

2017 Kidney Disease & Obesity – Healthy Lifestyle for Healthy Kidneys 

2016 Kidney Disease & Children – Act Early to Prevent It! 

2015 Kidney Health for All 

2014 Chronic Kidney Disease (CKD) and aging 

2013 Kidneys for Life – Stop Kidney Attack! 

2012 Donate – Kidneys for Life – Receive 

2011 Protect your kidneys: Save your heart 

2010 Protect your kidneys: Control diabetes 

2009 Protect your kidneys: Keep your pressure down 

2008 Your amazing kidneys! 

2007 CKD: Common, harmful and treatable 

2006 Are your kidneys OK?” 

If only my nurse practitioner had been aware of National Kidney Month [That’s the topic of next week’s blog] or World Kidney Day, she could have warned me immediately that I needed to make lifestyle changes so the decline of my kidney function could have been slowed down earlier. How much more of my kidney function would I still have if I’d known earlier? That was thirteen years ago. This shouldn’t still be happening… but it is. 

Photo by Gabby K on Pexels.com

I received a phone call a few years ago that just about broke my heart.  Someone very dear to me sobbed, “He’s dying.” When I calmed her down, she explained a parent was sent to a nephrologist who told him he has end stage renal disease and needed dialysis or transplantation immediately. 

I pried a little trying to get her to admit he’d been diagnosed before end stage, but she simply didn’t know what I was talking about. There had been no diagnose of Chronic Kidney Disease up to this point. There was diabetes, apparently out of control diabetes, but no one impressed upon this man that diabetes is the foremost cause of CKD. 

What a waste of the precious time he could have had to do more than stop smoking, which he did [to his credit], the moment he was told it would help with the diabetes.  Would he be where he was then if his medical practitioners had been aware of National Kidney Month or World Kidney Day, especially since this man was high risk due to his age and diabetes?  I fervently believe so. 

I have a close friend who was involved in the local senior center where she lives.  She said she didn’t know anyone else but me who had this disease.  Since 1 out of every 7 people does nationally (That’s 15% of the adult population) and being over 65 places you in a high risk group, I wonder how many of her friends were included in the 90% of those in the early stage of CKD who don’t know they have CKD or don’t even know they need to be tested.  I’d have rather been mistaken here, but I’m afraid I wasn’t. National Kidney Month or World Kidney Day could have helped them become aware. Thank you to the CDC for these figures. Please note the figures are as of 2019. 

For those of you who have forgotten [Easily understood explanations of what results of the different items on your tests mean are in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.], all it takes is a blood test and a urine test to detect CKD.  I have routine blood tests every three months to monitor a medication I’m taking.  It was in this test, a test I took anyway, that my family physician uncovered Chronic Kidney Disease as a problem. 

There is so much free education about CKD online. Maybe you can start with the blogroll on the right side of the blog or hit ‘Apps’ on the Topics Dropdown .Responsum is a good place to start. None of us needs to hear another sorrowful, “If only I had known!” 

Until next week, 

Keep living your life! 


Black History Month: Entertainers I Miss

This is the last week of Black History Month and I’d like to honor that. I’ve previously written about Blacks in the history of nephrology and other paths in life. Being a former actor and just having had a visit from a member of my acting community (a safe visit: double masked, hand sanitized, and social distanced.), I got to thinking about Blacks in entertainment who died of kidney disease.  

But first, this is what I included in the upcoming SlowItDownCKD 2020 to explain what Black History Month actually is: 

“As Andrea Wurtzburger wrote in People Magazine (I knew there was a reason I grabbed this first each time I waited in one medical office or another.) in the February 13, 2020… 

‘Black History Month is an entire month devoted to putting a spotlight on African Americans who have made contributions to our country. Originally, it was seen as a way of teaching students and young people about the contributions of Black and African Americans in school, as they had (and still have) been often forgotten or left out of the narrative of the growth of America. Now, it is seen as a celebration of those who’ve impacted not just the country, but the world with their activism and achievements.’” 

Now keep in mind that the further back we go, the more people there are that died of kidney disease since treatment was non-existent at first and then limited. Nephrology is a relatively young field of medicine. According to NEJM Resident 360, a nephrology journal for medical students, 

“The initial recognition of kidney disease as independent from other medical conditions is widely attributed to Richard Bright’s 1827 book ‘Reports of Medical Cases,’ which detailed the features and consequences of kidney disease. For the next 100 years or so, the term ‘Bright’s disease’ was used to refer to any type of kidney disease. Bright’s findings led to the widespread practice of testing urine for protein — one of the first diagnostic tests in medicine. 

The study of kidney disease was furthered by William Howship Dickinson’s description of acute nephritis in 1875 and Frederick Akbar Mahomed’s discovery of the link between kidney disease and hypertension in the 1870s. Mahomed’s original sphygmograph, created when he was a medical student, was improved in 1896 by Scipione Riva-Rocci, of Italy, with the use of a cuff to encircle the arm….” 

I’m listening to Art Tatum’s (10/13/09 – 11/5/56) music as I write today’s blog. According to National Public Radio (NPR): 

“One of the greatest improvisers in jazz history, Art Tatum also set the standard for technical dexterity with his classic 1933 recording of ‘Tea for Two.’ Nearly blind, Tatum had artistic vision and ability that made him an icon of jazz piano, a musician whose impact will be felt for generations to come…. 

Although his excessive drinking didn’t affect his playing, it did unfortunately affect his health. Tatum began showing evidence of euremia, a toxic blood condition resulting from a severe kidney disease. On Nov. 5, 1956, Tatum died at age 47, and although his career was relatively short, Tatum’s brilliant playing remains unparalleled and highly influential.” 

As far as I can tell, ‘euremia’ is either an alternative or misspelling of uremia. I could not find it despite multiple sources. Each one reverted to ‘uremia’. 

Have you heard of Ivan Dixon? No? How about the tv series ‘Hogan’s Heroes’? Encyclopedia.com organizes their information a bit differently: 

“Career: Stage, television, and screen actor, 1957-91; film and television director, 1970-93. 

Memberships: Academy of Motion Picture Arts and Sciences; Directors Guild of America; Negro Actors for Action; Screen Actors Guild. 

Awards: Emmy Award nomination, 1967, for The Final War of Olly Winter; received four National Association for the Advancement of Colored People Image Awards; Black Filmmakers Hall of Fame; National Black Theatre Award; Paul Robeson Pioneer Award, Black American Cinema Society. 

For his achievements on the stage and screen, Dixon was inducted into the Black Filmmakers Hall of Fame. He was the recipient of four National Association for the Advancement of Colored People Image Awards, in addition to the National Black Theatre Award and the Paul Robeson Pioneer Award given by the Black American Cinema Society.” 

He died of complications from kidney failure. There seems to be no record of what these complications were, although we can guess. 

Barry White (9/12/44 – 7/4/03), a singer and songwriter whose voice I will always miss, died of a stroke while awaiting a transplant. His kidney disease had been caused by hypertension.  The following is from Biography.com, which has much more information about him. 

“…. Love Unlimited’s success in 1972 can in large part be attributed to White’s throaty vocals in such hits as “Walkin’ In The Rain With The One I Love.” The group’s success rejuvenated White’s own career, receiving acclaim for such songs as “I’m Gonna Love You Just A Little More Baby” and “Never, Never Gonna Give Ya Up” in 1973 and “Can’t Get Enough Of Your Love, Babe” and “You’re The First, The Last, My Everything” in 1974…. 

During the peak of his career, White earned gold and platinum discs for worldwide sales. The UK singer Lisa Stansfield has often publicly supported White’s work and in 1992, she and White re-recorded a version of Stansfield’s hit, “All Around The World.” During the ’90s, a series of commercially successful albums proved White’s status as more than just a cult figure….” 

To be honest, the only way I could have enjoyed writing this blog more is if these talented people were still with us. 

Until next week, 

Keep living your life! 

Your Kidneys and Covid – or – Covid and Your Kidneys

Thanks to an unidentified woman at The Virginia G. Piper Cancer Center who passed a telephone number on to me, Bear and I have appointments for both our first and second Covid vaccinations. That got me to thinking. In this time of Covid with its breathing problems, is Chronic Kidney Disease involved in some way? We know that Covid can cause Acute Kidney Injury, but this is different. It’s trying to find out if CKD can contribute to Covid. 

Respiratory Acidosis sprang to mind, probably because of the word ‘respiratory.’ We already know acidosis can be a problem for CKD patients, but does it contribute to Covid? I didn’t know, so I started my search for an answer at The National Center for Biotechnology Information.    

“Acid-base disorders are common in patients with chronic kidney disease, with chronic metabolic acidosis receiving the most attention clinically in terms of diagnosis and treatment. A number of observational studies have reported on the prevalence of acid-base disorders in this patient population and their relationship with outcomes, mostly focusing on chronic metabolic acidosis…. “ 

Okay, so we’ve established chronic metabolic acidosis is common in CKD patients, but what is that? The National Kidney Foundation explains: 

“The buildup of acid in the body due to kidney disease or kidney failure is called metabolic acidosis. When your body fluids contain too much acid, it means that your body is either not getting rid of enough acid, is making too much acid, or cannot balance the acid in your body.” 

And, of course, we know that chronic means long term as opposed to acute, which means sudden onset. 

But respiratory acidosis? Is that part of acidosis? MedlinePlus came to the rescue with an easily understood definition for us: 

“Respiratory acidosis is a condition that occurs when the lungs cannot remove all of the carbon dioxide the body produces. This causes body fluids, especially the blood, to become too acidic.” 

Let me think a minute to figure out how this is all connected. Got it!  Let’s go back to what the kidneys do for us. 

“Your kidneys remove wastes and extra fluid from your body. Your kidneys also remove acid that is produced by the cells of your body and maintain a healthy balance of water, salts, and minerals—such as sodium, calcium, phosphorus, and potassium—in your blood. 

Without this balance, nerves, muscles, and other tissues in your body may not work normally. 

Your kidneys also make hormones that help 

  • control your blood pressure 
  • make red blood cells  
  • keep your bones strong and healthy” 

Thank you to the National Institute of Diabetes and Digestive and Kidney Diseases for the above information. 

Aha! Carbon dioxide is a waste product even though the body produces it. The kidneys are tasked with removing wastes. CKD is a progressive decline in your kidney function for over three months. Decline as in don’t work as well. Oh, my. CKD can contribute to breathing problems with Covid. 

The January, 2021, issue of NDT [ Gail here: that stands for Nephrology, Dialysis, Transplantation] tells us: 

“Although not listed in initial reports as a risk factor for severe COVID-19, CKD has emerged not only as the most prevalent comorbidity conveying an increased risk for severe COVID-19, but also as the comorbidity that conveys the highest risk for severe COVID-19. The increased risk is evident below the threshold of eGFR that defines CKD and the risk increases as the eGFR decreases, with the highest risk in patients on kidney replacement therapy. Although CKD patients are known to be at increased risk of death due to infectious diseases, the factors contributing to their greater vulnerability for severe COVID-19 should be explored, as these may provide valuable insights into therapeutic approaches to the disease in this patient group. It is presently unknown if earlier categories of CKD (G1/G2, i.e. patients with preserved kidney function but with increased albuminuria) are also at an increased risk of severe COVID-19, and this must be explored. Moreover, the recognition that CKD significantly contributes to the severity of COVID-19 should now result in focused efforts to improve outcomes for the 850 million global CKD patients.”  

Uh-oh, do we panic now? No, no, no.  We protect ourselves. The Centers for Disease Control and Prevention [CDC] has been extremely vocal about this: 

“It is especially important for people at increased risk of severe illness from COVID-19, and those who live with them, to protect themselves from getting COVID-19. 

The best way to protect yourself and to help reduce the spread of the virus that causes COVID-19 is to: 

Limit your interactions with other people as much as possible. 

Take precautions to prevent getting COVID-19 when you do interact with others. 

If you start feeling sick and think you may have COVID-19, get in touch with your healthcare provider within 24 hours.  If you don’t have a healthcare provider, contact your nearest community health center or health department.” 

The CDC further explains: 

“Three Important Ways to Slow the Spread 

Wear a mask to protect yourself and others and stop the spread of COVID-19. 

Stay at least 6 feet (about 2 arm lengths) from others who don’t live with you. 

Avoid crowds. The more people you are in contact with, the more likely you are to be exposed to COVID-19.” 

By the way, the CDC acknowledges that CKD raises your risk of getting Covid… as does diabetes… and possibly hypertension. These are also the two primary causes of CKD.  

Until next week,

Keep living your life!

A New Year, New Kidney Disease Information

Happy New Year! Or, at least, that’s what I’m hoping for. I fervently believe the more you know, the better you can handle whatever’s happening in your world. That’s why, today, I’m exploring yet another term pertaining to kidney disease that I hadn’t been aware of. Oh my, how many, many types of kidney disease am I (and possibly you) unaware of?  

This one is membranous glomerulonephritis. I sort of-maybe-suspected what it might be, but I wanted to know for sure so I turned to Healthline – who bestowed a couple of awards on this blog a few years ago – at https://www.healthline.com/health/membranous-nephropathy for something more in the way of a definition. 

“Your kidneys are made up of a number of different structures that aid in the removal of wastes from your blood and the formation of urine. Glomerulonephritis (GN) is a condition in which changes in the structures of your kidney can cause swelling and inflammation. 

Membranous glomerulonephritis (MGN) is a specific type of GN. MGN develops when inflammation of your kidney structures causes problems with the functioning of your kidney. MGN is known by other names, including extramembranous glomerulonephritis, membranous nephropathy, and nephritis.” 

It’s hard to know where to start in exploring this disease. Let’s take the easy way and start with a definition of nephritis from… ta da, you guessed it – my all-time favorite dictionary, the Merriam Webster at https://www.merriam-webster.com/dictionary/nephritis.  

“acute or chronic inflammation of the kidney caused by infection, degenerative process, or vascular disease” 

I’m going back to the beginning of my blog journey to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the following definitions. 

“Acute: Extremely painful, severe or serious, quick onset, of short duration; the opposite of chronic. 

 Chronic: Long term; the opposite of acute.” 

By the way, you can click on the title of the book if you’re interested in purchasing it from Amazon. 

So, basically, nephritis means a kidney problem. But membranous glomerulonephritis is something more specific in that it is a kind of GN or glomerulonephritis. Back to the dictionary for the definition of glomerulonephritis: 

“acute or chronic nephritis that involves inflammation of the capillaries of the renal glomeruli, has various causes (such as streptococcal infection, lupus, or vasculitis) or may be of unknown cause, and is marked especially by blood or protein in the urine and by edema, and if untreated may lead to kidney failure” 

Ah, so now we know what part of the kidneys are involved. Do you remember what the glomeruli are? Just in case you don’t, here’s how ‘s Lexicon at https://www.lexico.com/en/definition/glomerulus  defines this plural noun: 

“a cluster of nerve endings, spores, or small blood vessels, in particular a cluster of capillaries around the end of a kidney tubule, where waste products are filtered from the blood.” 

Now we’re getting somewhere. Let’s keep digging. Membranous glomerulonephritis is a specific GN. I went directly to MedlinePlus, which is part of the National Institutes of Health, which in turn is part of The U.S. National Library of Medicine at https://medlineplus.gov/ency/article/000472.htm

“Membranous nephropathy is caused by the thickening of a part of the glomerular basement membrane. The glomerular basement membrane is a part of the kidneys that helps filter waste and extra fluid from the blood. The exact reason for this thickening is not known. 

The thickened glomerular membrane does not work normally. As a result, large amounts of protein are lost in the urine. 

This condition is one of the most common causes of nephrotic syndrome. This is a group of symptoms that include protein in the urine, low blood protein level, high cholesterol levels, high triglyceride levels, and swelling. Membranous nephropathy may be a primary kidney disease, or it may be associated with other conditions. 

The following increase your risk for this condition: 

Cancers, especially lung and colon cancer 

Exposure to toxins, including gold and mercury 

Infections, including hepatitis B, malaria, syphilis, and endocarditis 

Medicines, including penicillamine, trimethadione, and skin-lightening creams 

Systemic lupus erythematosus, rheumatoid arthritis, Graves disease, and other autoimmune disorders 

The disorder occurs at any age, but is more common after age 40.” 

Being only a bit more than a year out from cancer, I was getting nervous so I went to the National Kidney Foundation at https://www.kidney.org/atoz/content/membranous-nephropathy-mn for a list of symptoms. 

“Swelling in body parts like your legs, ankles and around your eyes (called edema) 

Weight gain 

Fatigue 

Foaming of the urine caused by high protein levels in the urine (called proteinuria) 

High fat levels in the blood (high cholesterol) 

Low levels of protein in the blood” 

These symptoms struck me as so common that I wanted to know just how usual membranous glomerulonephritis was. After checking numerous sites, the consensus I found was that this is not a common disease. Thank goodness! 

Even though it’s not common, we still might want to know what to do if we were diagnosed with membranous glomerulonephritis, especially since I discovered that this may be considered an autoimmune disease. This is how the Mayo Clinic suggested the disease be treated: 

“Treatment of membranous nephropathy [Gail here: That’s a synonym for membranous glomerulonephritis.] focuses on addressing the cause of your disease and relieving your symptoms. There is no certain cure. 

However, up to three out of 10 people with membranous nephropathy have their symptoms completely disappear (remission) after five years without any treatment. About 25 to 40 percent have a partial remission. 

In cases where membranous nephropathy is caused by a medication or another disease — such as cancer — stopping the medication or controlling the other disease usually improves the condition.” 

There is much more detailed treatment information on their website at mayoclinic.in/354QFPU.    

That is a bit more reassuring. Thank you to all the readers who use terms I hadn’t heard of before and/or ask questions about topics that are new to me. May this year be kinder to us than the last one. 

Until next week, 

Keep living your life! 

Baby, It’s Cold Outside. I Mean Inside.

As a diabetic, I have my feet checked and my toenails cut every nine weeks. When I was at my podiatrist’s recently, we both made mention of my slightly blue skin at the same time. I thought it was just thin skin showing the veins underneath. That’s when she mentioned a syndrome I’d heard of many times, but had never explored: Raynaud’s Syndrome, named after the Frenchman who discovered it. 

Hmmm, I wondered. Could this be related to Chronic Kidney Disease? So, of course, I looked for answers to my questions. Let’s get the basics down first… like what is it? 

Circulation Foundation at http://bit.ly/37yxSy4 answers that question.  

“Raynaud’s is a common condition where the blood supply to the extremities is interrupted or reduced. This usually affects the fingers and toes, but occasionally the nose or ears. 

Attacks are usually provoked by cold or a sudden change in temperature. During an attack the affected body part first becomes white, then turns blue as the tissues use up the oxygen and finally bright red as the arteries relax and fresh blood rushes in. 

Raynaud’s can vary in form, from very mild to severe cases – which can require treatment. 

Anyone of any age can suffer from Raynaud’s, but younger women are affected more commonly. It seems to be a change in temperature, rather than just exposure to cold that precipitates an attack, so although worse in winter, it can occur in summer too. 

Stress or anxiety can also provoke a Raynaud’s attack. Some cases of Raynaud’s are associated with some other diseases (called secondary Raynaud’s).” 

Uh, secondary Raynaud’s? What’s that? Back to the drawing board or, in this case, the researching mode. Let’s try WebMD. Bingo! 

“Secondary Raynaud’s (Raynaud’s syndrome, Raynaud’s phenomenon) happens as a result of another illness. It’s often a condition that attacks your body’s connective tissues, like lupus or rheumatoid arthritis. It’s less common, but it’s more likely to cause serious health problems. This can include things like skin sores and gangrene. These happen when cells and tissue in your extremities die from lack of blood.” 

Then, according to WebMD at http://wb.md/3h3fznI, IF I have Raynaud’s, it’s probably secondary Raynaud’s. But what about the terms Raynaud’s syndrome and Raynaud’s phenomenon in the quote above? Are they interchangeable? 

Hello, my favorite dictionary. The Merriam-Webster Medical Dictionary at http://wb.md/3h3fznI tells us that Raynaud’s phenomenon is the same as Raynaud’s syndrome: 

“the symptoms associated with Raynaud’s disease 

— called also Raynaud’s syndrome” 

Of course, that brings up another question. Symptoms are mentioned in the definition. What are the symptoms of Secondary Raynaud’s? I’ll bet the Mayo Clinic at http://mayocl.in/3pn9fur can help us out here. 

“Cold fingers or toes 

Color changes in your skin in response to cold or stress 

Numb, prickly feeling or stinging pain upon warming or stress relief 

During an attack of Raynaud’s, affected areas of your skin usually first turn white. Then, they often turn blue and feel cold and numb. As you warm and your circulation improves, the affected areas may turn red, throb, tingle or swell. 

Although Raynaud’s most commonly affects your fingers and toes, it can also affect other areas of your body, such as your nose, lips, ears and even nipples. After you warm up, the return of normal blood flow to the area can take 15 minutes.” 

I should mention here that severe cases of Secondary Raynaud’s are rare. Also, I can honestly say that I have each of these symptoms at times. As far as the cold, I figured it was just anemia. Wrong. 

We know what Secondary Raynaud’s is, what the symptoms are, and that it need not be serious, but how do you treat it? 

Wait, wait, wait. I just found this from the Merck Manual, Consumer Edition at http://bit.ly/38oZwwr

“Raynaud syndrome, a functional peripheral arterial disease, is a condition in which small arteries (arterioles), usually in the fingers or toes, narrow (constrict) more tightly than normal in response to exposure to cold.” 

It’s a PAD? Oh, excuse me, that means “peripheral arterial disease,” as mentioned above. Let’s get a definition. Back to the Merriam Webster Medical Dictionary. This time at http://bit.ly/37CdR9P:  

“damage to or dysfunction of the arteries outside the heart resulting in reduced blood flow” 

Hmmm, the podiatrist did mention spasms in the arteries at the extreme ends of my body, meaning my fingers and toes. This is all starting to make sense now. 

But we were going to see what we could find out about treatment before I made the PAD discovery. Let’s go back to that.  MedicalNewsToday at https://www.medicalnewstoday.com/articles/176713 had quite a bit of information: 

“There is no cure for Raynaud’s disease, but there are ways to manage symptoms. 

For mild forms of Raynaud’s disease, covering exposed skin before leaving the house can help. If an attack occurs, soaking the affected parts in warm, not hot, water can alleviate symptoms and prevent them from worsening. 

If stress is a factor, learning to manage stress can help. 

For moderate to severe cases, medication may be necessary. 

Alpha-1 blockers can counter the effect of norepinephrine, which constricts blood vessels. Examples include doxazosin and prazosin. 

Dihydropyridine calcium channel blockers relax the smaller blood vessels of the hands and feet. Examples include amlodipine, nifedipine, and felodipine. 

Topical nitroglycerin ointment applied to the affected area appears to relieve the symptoms by improving blood flow and cardiac output and decreasing blood pressure. 

Other vasodilators dilate the veins, easing symptoms. Examples include losartan, sildenafil (Viagra), fluoxetine (Prozac), and prostaglandin.” 

They also talk about surgery and/or chemical injections for severe cases. 

The funny thing is I live in Arizona. We have winter… sort of, but nothing drastic like snow and ice. I also take losartan for high blood pressure and to protect my kidneys. As for stress, that is present now with me just recovered from the double hernia surgery, my bother in a health care facility for Parkinson’s dementia, my husband’s Alzheimer’s and someone extremely close to my children in ICU with Covid-19 and other illnesses. (Reading this, I wonder why I’m not depressed!) 

Until next week, 

Keep living your life! 

Feeling Nostalgic

It’s getting closer to the end of the year. Halloween and Thanksgiving have passed. Chanukah, Kwanzaa, and Christmas will be upon us sooner than we think. And then, the new year. But my nostalgia deals with the history of acknowledging and treating kidney disease. I was lucky enough to stumble across the following early history at https://hekint.org/2017/01/30/history-of-nephrology-beginnings/. It’s from Hektoen International, A Journal of Medical Humanities. I must warn you it’s a long article, but well worth the read. Enjoy: 

“History of nephrology: beginnings 

George Dunea 
Chicago, Illinois, United States 

 ….Mesopotamia 

Some of the earliest knowledge about kidney and urinary diseases comes from the cradle of Western civilization, Mesopotamia, from the cuneiform clay tablets of Akkadia, Assyria, and Babylon that contain references to urinary obstruction, stone, cysts, urethritis, stricture, and urethral discharge…. In ancient Babylon physicians made diagnoses depending on whether the urine looked like paint, wine dregs, beer, or beet juice. They treated symptoms with remedies derived from plants or minerals. They administered drugs by blowing them through a tube into the urethra, most likely also to relieve urinary obstruction, and using alcohol as an anesthetic. Much of the medical information generated in Mesopotamia was later transmitted to the Mediterranean, especially to Greece….  

Egypt 

In ancient Egypt priest-physicians have recorded many details of their patients’ symptoms on papyrus scrolls. Curiously, they cooked some of their old papyri books in oil and smeared them on their patients to relieve symptoms of dropsy or fluid retention…. They embalmed their dead, removing most of the viscera but leaving behind the kidneys and the heart. In the Ebers papyrus of 1550 BCE they refer to retention of urine, dysuria, and frequency. Hematuria, mentioned over 50 times, was probably due to schistosomiasis, then as now endemic in the valley of the Nile. Examination of mummies has led to discovery of kidney abscesses and stones, parasite ova, and congenital renal deformities. Treatments are listed in the Ebers papyrus in some 24 paragraphs under the heading: ‘Starting remedies to make disappear the retention of urine when the lower abdomen is full.’…  

Greece 

Records of urinary disorders are found in the Hippocratic Corpus, a collection of some 60 treatises that may represent the work of several medical writers. How much was written by Hippocrates himself remains uncertain. Nevertheless, Hippocrates of Cos (460–377 BCE) is regarded as the father of medicine, and many of the aphorisms attributed to him refer to diseases of the kidney: 

‘Bubbles appearing on the surface of the urine indicate disease of the kidneys and a prolonged illness.’ 
‘Colorless urine is bad.’ 
‘The sudden appearance of blood in the urine indicates that a small renal vessel has burst.’ 
‘Diseases of the kidney and of the bladder are difficult to cure in old age.’ 

Other comments concern cases where the urine was turbid or contained pus or blood, bran-like particles, or sandy sediment…. 

Aristotle, whose opinions dominated Western thought for over 2,000 years, also wrote about the kidney. From his observations on fish and birds he concluded that the kidneys were not essential to life, and from the rhesus monkey he incorrectly deduced that the right kidney was situated higher than the left. He thought the kidneys were there to anchor the blood vessels in the body, and also to secrete fluid not eliminated otherwise. He considered renal fat as the cause of cancer and of gangrene, and in De Partibus Animalium noted that ‘very often the kidneys are found to be full of stones, growths, and small abscesses.’… 

In the 3rd and 2nd century BCE other Greek physicians also made contributions, describing the prostate gland, declaring that urine was formed in the kidney, reporting on recto-vesical fistula, and performing operations. They applied pressure over the lower abdomen to relieve urinary retention, and recommended the use of poultices with soothing and diuretic properties over the kidneys…. 

Rome and Byzantium 

Physicians in Rome were often Greeks from Asia Minor who had studied in Alexandria…. Celsus (63 BCE–14 CE), though not a physician, wrote on many medical subjects, including lithotomy and the use of a bronze catheter…. In his writings, Pliny the Elder also refers to the kidney…. Areteus of Capadocia (81–138 CE), now remembered mainly for describing diabetes mellitus as the melting of the flesh into the urine, wrote about hydronephrosis, gout, renal colic, strangury, postobstructive diuresis, edema, and the anemia of renal insufficiency…. Dioscorides, also from Asia Minor and perhaps physician to emperor Nero, practiced in Rome during the first century and wrote an extensive pharmacopoeia, noting that certain poisons caused renal inflammation, and recommending enemas with ptisan or mallow for renal failure…. Galen of Pergamon (130–200 CE), physician to emperor Marcus Aurelius, referred in his extensive writings to renal cysts, breakage of the capillaries into the kidney, thrombosis, and inflammation. Called the father of experimental medicine, he ligated the ureters to prove that urine flowed from the kidneys to the bladder…. 

Among Byzantine physicians, Rufus of Ephesus in the first century CE described renal failure, abscesses, and calculi, recommending poultices of grilled cicadas as a diuretic, advising flushing the kidneys with large amounts of water, and prescribing urinating in a hot bath to relieve retention of urine. Somewhat later Oribasius (326–403), physician to emperor Julian the Apostate, wrote profusely on medical matters, summarizing the works of Galen and others in 70 books…. First to use the term ‘ureter,’ he treated dysuria and ureteral stone, did anatomical dissections, described the systemic and pulmonary circulation, discerned the existence of capillaries, and suggested that the kidneys absorbed urine from the blood stream…. 

In the 9th century Theophanes Nonus noted hematuria resulting from poisonous remedies and from the venom of serpents…. Other Byzantine physicians wrote right up to the 14th century about kidney inflammation and failure, emphasizing the changes in the appearance of the urine, developing the practice of uroscopy,… and often achieving fame as physicians to the Byzantine emperors. 

 Arabs 

The 9th and 10th centuries were a golden age for Arab medicine, in which several physicians achieved fame for their clinical acumen and perspicacious observations. Rhazes (865–925), a musician who later became a physician and was called the Galen of Islam,…described in his many clinical writings renal abscess or severe infections with pus in the urine, kidney stones, and renal failure from systemic diseases. Even more prolific was Avicenna (980–1037), poet, politician, and writer, whose works greatly influenced Western Renaissance medicine and who wrote extensively on the color, density, odor, and sediments of urine, foreshadowing the later uroscopists. Recommended treatments included inserting a bug or louse into the urethral meatus to stimulate micturition. He wrote several excellent descriptions of clinical cases, as did several other Arab authors until the 13th century…. 

There were also eminent Jewish physicians living in the Arab possessions around the Mediterranean, notably Moses Maimonides (1138–1204), born in Cordova but eventually settling down in Cairo and attending on the sultan Saladin. A renowned medieval rabbi, philosopher, astronomer, and physician, he wrote 10 treatises on medicine, including an entire chapter of aphorisms dealing with urinalysis. He discussed lower urinary tract obstruction, hesitancy, narrow stream, retention, pyuria, and hematuria. He agreed with Hippocrates that diseases of the kidney in the elderly were difficult to cure, and noted red urine in patients who probably had glomerulonephritis. In patients with blackwater fever he noted that ‘black urine and black sediment are extremely malignant and indicate serious illness. They occur in association with what resembles the death of natural resources . . . I have never seen anyone who urinated black urine who survived.’…  

Uroscopy 

Uroscopy, the naked eye examination of the urine for diagnosis, is as old as medicine itself, based on the assumption that diseases could be identified and treated following such visual inspection…. It was advocated by Hippocrates, though without much enthusiasm…. Several of the Greek physicians practiced uroscopy and helped develop a complex diagnostic model based on the theories of the four humors…. Many treatises on uroscopy were published in antiquity and later by Byzantine, Arab, and Latin physicians…. Uroscopic theory and practice reached an apogee between the 9th and 14th century in southern Italy at the medical school of Salerno, then a melting pot of different cultures…. There several masters of medicine or magistri wrote (or translated from Arabic) books on diagnostic uroscopy. One of its major exponents, Isaac Ebreus Isaac (880–940), assembled in his Guida Medicorum many of the principles of uroscopy. He was followed by Magister Maurus, according to whom fluids were separated in the body by the stomach and liver, with the generation of humors (1250 CE). Gilles de Corbeil, a Frenchman, went to Salerno, then returned to Paris and wrote Songs on Urinary Judgements, a composition in verse that remained popular until the 16th century.17 A 13th century anonymous manuscript titled De Urinis contains aphorisms such as: 

Clear urine, pale or almost green indicates pain in the stomach in males, but in women means inflammation or phlegm from the umbilicus to the throat, and thirst. 
Small volume urine which is sulphurous indicates diarrhea. 
Urine which is red with fluid beams indicates disease of the spleen. 
A red circulus means pain in the head due to blood. 
Urine of a vicious woman is quite colored, cloudy by night, and dense in the morning. 
Urine of a virgin is clear, white, light, and transparent, with very small bubbles on the surface….  

Sclerosis of the kidneys 

Hardening or sclerosis of the kidneys had been recognized as the hallmark of chronic renal failure since antiquity…. Thus Rufus of Ephesus compiled a treatise in which he noted that sclerosis of the kidneys was not painful, but might cause dropsy. He recommended rest, enemas, cupping of the loins, baths, refrigerant and sedative medicines given internally…. Aetius of Amida (502–575), court physician to emperor Justinian in Constantinople, based his Tetrabiblion largely on the works of Rufus, Hippocrates, and Galen, and also mentioned hardening of the kidneys…. Paul of Aegina (625–690), practicing in Alexandria even after the Arab conquest, also noted renal hardening and wrote in his seven books that ‘when hardness occurs in the kidneys it does not cause pain . . . but the limbs lose their strength, little urine is passed, and the whole habit resembles that of dropsical persons.’ He recommended emollients to soften the kidneys, frictions and fomentations, clysters to clear out the bowels, and diuretics such as nard, cassia, St. John’s wort pepper, sweet hay, boiled squill in wine and honey, moist alum, flakes of copper, and should all fail, ox dung dried and drunk (one spoonful every day)…. 

Also aware of sclerosis of the kidneys as a cause of illness were the Arab physicians Rhazes and Avicenna…. William of Saliceto (1210–1277) observed that hard kidneys (duritie in renibus) were difficult or even impossible to treat. He moved to Bologna in 1269 to become an outstanding teacher of medicine, and during his time taught more than 10,000 students…. He emphasized bedside instruction and wrote an extensive medical textbook, mentioning that hardness of the kidney could be the result of an abscess, an episode of high fever, or arise spontaneously. The hardness, he wrote, looks chalk-like. Its clinical signs were a reduction in urinary output, a dull pain or heaviness in the back and sides, and after a time enlargement of the belly and generalized edema…. 

Later, the Flemish physician Jan Baptiste Van Helmont (1579–1644) devoted much of his time to research, carrying out autopsies on patients who had died with gross ascites, noting that their kidneys were shrunken and hard, and concluding that the kidney was the cause of the edema …. 

Morgagni 

Giovanni Battista Morgagni (1682–1771), often regarded as the founder of pathological anatomy, made similar observations. After studying in Bologna with Valsalva, he moved to Padua, where he remained professor of theoretical medicine and anatomy for 50 years. He carried out many autopsies, correlating anatomical findings with the clinical symptoms. 

Towards the end of his career he published observations on cases he had studied over 50 years, including necropsy descriptions of diseased kidneys: solitary, asymmetrical, irregular, hardened, softened, suppuration, hydronephrosis, calculi, tumors, cysts…. Of particular interest, he described a patient who had suffered from nausea, vomiting, headache, and episodes of loss of consciousness, and who at autopsy had greatly shrunken, hard, irregularly shaped greyish kidneys. He concluded that these renal changes were the cause of the symptoms….  

Paracelsus 

Theophrastus Bombastus von Hohenheim (1493–1541), better known as Paracelsus, is perhaps the most colorful medical figure of the Renaissance. Born in Switzerland, he studied medicine in several European cities, practiced in Strasbourg and Basel, and eventually wandered through various German, Swiss, and Austrian towns. His death has often been subject of speculation, being variously attributed to murder, accident, congenital syphilis, liver failure, and also to kidney disease, as suggested by the finding of rickets in his exhumed skull in 1880…. 

Paracelsus wrote on urinalysis, proteinuria, hematuria, and gout. Particularly interested in dropsy, he described its symptoms and signs, commented on its prognosis, noted that in its advanced stages ‘the urine decreases and thickens,’ and was first to use mercury for treatment. He attempted chemical analysis of the urine, adding wine or vinegar or rennet to it and noting that it curdled and produced a precipitate. He also assessed urine by its weight, a precursor of measuring the specific gravity. He combined medicine with alchemy and astrology, and claimed to affect many cures with his Tincture of Philosophers. …  

Andreas Vesalius 

Born in Brussels, Andreas Vesalius (1514–64) studied in Paris and Padua, and on the day after graduation was appointed professor of anatomy at the University of Padua. There he carried out many dissections and became famous for his lectures and anatomical drawings. Between the ages of 24 and 27 he prepared a book of over 700 pages of anatomical illustrations, and eventually became physician to Emperor Charles V. In his famous plates he described the anatomy of the kidney, also attempting to understand its function, and concluding that urine extracted from the blood entered a cavity before being excreted into the urinary passages. His brilliantly illustrated textbook of anatomical illustrations has been reproduced for centuries….  

Marcello Malpighi 

Founder of microscopical anatomy, and professor of anatomy at Messina and later at Bologna, Marcello Malpighi (1628–94) was first to describe the renal glomerulus (Malpighian corpuscle). Using the microscope as avant-garde technology, he also studied the brain, liver, tongue, lung, and skeletal muscle, describing their architecture and postulating what their function might be. In the course of his studies of the frog’s mesentery, he discovered the presence of capillaries. In the kidney he described the pyramids of the renal medulla and the collecting ducts, and noted the opening of these ducts at the papilla. In the omentum of the porcupine he first noticed the red cells, which he interpreted as being fat globules or constituents of coagulated blood. Using a microscope with x30 magnification and sometimes with prior dye injection, he described the glomeruli, which when injected ‘turned black . . . hanging like apples from the blood vessels, which, swollen with the black fluid, look like a beautiful tree.’…” 

Many, many thanks to Dr. Dunea for what I consider fascinating history. And thank you for indulging my nostalgia. 

Until next week, 

Keep living your life! 

Stress Is as Stress Does

I have been so stressed lately. It’s the usual: Covid-19, the elections, etc. But then there are the personal reasons: my upcoming surgery, Bear’s cataract surgery and being his caretaker, the third under-the-slab water leak in our house, and my brother’s ill health come to mind right away. I do take time to quietly read, play Word Crush, or watch a movie, but the stress is still there… and my blood glucose numbers are going up. “Is there a correlation?” I wondered. 

You may remember (I certainly do) that Healthline included this blog in the Best Kidney Disease Blogs for 2016 & 2017. They like my work; I like theirs, so I went to their website to see what I could find about stress and diabetes. I have diabetes type 2, by the way. That’s the type in which you produce insulin, but your body doesn’t use it well. 

Okay, now let’s see what Healthline at https://bit.ly/2TIHwWZ has to say: 

“… But there’s a problem. The body can’t differentiate between danger and stress. Both trigger fight-or-flight. 

So today’s most common ‘danger’ isn’t wild animals. It’s the letter from the IRS. There’s no quick resolution — no violent fight, no urgent need to run for miles. Instead, we sit in our sedentary homes and workplaces, our bodies surging with sugar, with no way to burn it off. 

That’s how stress messes with diabetes. Acute stress floods us with unwanted (and un-medicated) sugar. Chronic stress is like a leaking faucet, constantly dripping extra sugar into our systems. The impact on blood sugar caused by stress is so significant that some researchers feel it serves as a trigger for diabetes in people already predisposed to developing it.” 

Wait a minute here. “Acute stress floods us with unwanted (and un-medicated) sugar.” How does it do that? The answer I liked best is from Lark at https://bit.ly/3ebZU4b. Yes, Lark is a company that produces electronic aids for various stages of diabetes, but it also offers short, easy to understand explanations of what’s happening to your diabetes during different situations. 

“Cortisol signals your brain and body that it is time to prepare to take action. You may be able feel this as your heart pounds and muscles tense. At the same time, what you may not feel is that cortisol signals a hormone called glucagon to trigger the liver to release glucose (sugar) into your bloodstream. The result: higher blood sugar. 

Cortisol’s role in preparing your body for action goes beyond mobilizing glucose stores. Cortisol also works to make sure that the energy that you might spend (whether fighting a bear or running to stop your toddler from toddling into the street) gets replenished. That means you may feel hungry even when you do not truly need the food – and that can lead to weight gain. Again, the result is an increase in blood sugar.” 

Quick reminder: 

“Think of cortisol as nature’s built-in alarm system. It’s your body’s main stress hormone. It works with certain parts of your brain to control your mood, motivation, and fear. 

Your adrenal glands — triangle-shaped organs at the top of your kidneys — make cortisol. 

It’s best known for helping fuel your body’s ‘fight-or-flight’ instinct in a crisis, but cortisol plays an important role in a number of things your body does. For example, it: 

  • Manages how your body uses carbohydrates, fats, and proteins 
  • Keeps inflammation down 
  • Regulates your blood pressure 
  • Increases your blood sugar (glucose) 
  • Controls your sleep/wake cycle 
  • Boosts energy so you can handle stress and restores balance afterward” 

Thank you to WebMD at https://wb.md/35RaDgr for the above information. 

Let’s get back to how we end up with excess sugar in our blood due to both acute (sudden) and/or chronic (long term) stress. Diabetes Education Online, part of the Diabetes Teaching Center at the University of California, San Francisco, offers the following explanation. You can find out more by going to their website at https://bit.ly/3oNXgqi.    

“During stressful situations, epinephrine (adrenaline), glucagon, growth hormone and cortisol play a role in blood sugar levels. Stressful situations include infections, serious illness or significant emotion stress. 

When stressed, the body prepares itself by ensuring that enough sugar or energy is readily available. Insulin levels fall, glucagon and epinephrine (adrenaline) levels rise and more glucose is released from the liver. At the same time, growth hormone and cortisol levels rise, which causes body tissues (muscle and fat) to be less sensitive to insulin. As a result, more glucose is available in the blood stream.” 

Now I’m stressed about being stressed… and that’s after trying to keep my stress levels down so I don’t make my Chronic Kidney Disease worse… now I find it’s also making my diabetes worse. What, in heaven’s name, will happen if I continue to be this stressed? 

I went right to The National Kidney Foundation at https://bit.ly/2HQVsvs for an answer I could trust. 

“The combined impacts of increased blood pressure, faster heart rate, and higher fats and sugar in your blood can contribute to a number of health problems, including high blood pressure, diabetes, and heart disease (also known as cardiovascular disease). 

Stress and uncontrolled reactions to stress can also lead to kidney damage. As the blood filtering units of your body, your kidneys are prone to problems with blood circulation and blood vessels. High blood pressure and high blood sugar can place an additional strain or burden on your kidneys. People with high blood pressure and diabetes are at a higher risk for kidney disease. People with kidney disease are at higher risk for heart and blood vessel disease. If you already have heart and blood vessel disease and kidney disease, then the body’s reactions to stress can become more and more dangerous.” 

Oh, my! I think I’d better quietly read, play Word Crush, or watch a movie right now.  

Before I leave, I did want to let you know a $10 million Kidney Prize competition has been launched. If you’re seriously interested, go to https://akp.kidneyx.org. According to their website, KidneyX is 

“The Kidney Innovation Accelerator (KidneyX), a public-private partnership between the U.S. Department of Health and Human Services (HHS) and the American Society of Nephrology (ASN), is accelerating innovation in the prevention, diagnosis, and treatment of kidney diseases.” 

Until next week, 

Keep living your life! 

Baby, It’s Hot Outside.

As a person with arthritis among other maladies, I regularly see my rheumatologist. “A rheumatologist is a board certified internist or pediatrician who is qualified by additional training and experience in the diagnosis and treatment of arthritis and other diseases of the joints, muscles, and bones,” according to HSS at https://www.hss.edu/rheumatology-rheumatologist.asp. During my appointment, she mentioned that my GFR (Glomerular Filtration Rate) was 46.

Panic! It’s almost always in the low 50s. She calmed me down by telling me that GFR is usually lower during the Arizona heat (I know, I know: but it’s a dry heat.) of the summer. I don’t know why I was surprised. It made sense.

Think about it. Let me re-enforce this with a statement taken from study on PubMed at https://pubmed.ncbi.nlm.nih.gov/21617334/.

“However, the percent change in eGFR from spring to summer was greater in hypertensive patients with CKD… than in those without CKD …. “

PubMed is part of the National Institutes of Health’s National Library of Medicine’s National Center for Biotechnology Information.

I know hypertension (high blood pressure) is included in this statement, but the fact that GFR is lowered t than it’s lowered in those without hypertension leads us to the realization that those without hypertension DO have lower GFRs during the summer heat.

Another study from EuropePMC at https://europepmc.org/article/med/28946962 tells us:

“Recurrent dehydration in people regularly exposed to high temperatures seems to be resulting in an unrecognised cause of proteinuric chronic kidney disease, the underlying pathophysiological mechanism of which is becoming better understood. However, beyond heat waves and extreme temperatures, there is a seasonal variation in glomerular filtration rate that may contribute to the onset of renal failure and electrolyte disorders during extremely hot periods.”

Here are a couple of definitions you may need to understand the above statement. The first is from The Mayo Clinic at https://www.mayoclinic.org/symptoms/protein-in-urine/basics/definition/sym-20050656.

“Protein in urine — known as proteinuria (pro-tee-NU-ree-uh) — is excess protein found in a urine sample. Protein is one of the substances identified during a test to analyze the content of your urine (urinalysis).

Low levels of protein in urine are normal. Temporarily high levels of protein in urine aren’t unusual either, particularly in younger people after exercise or during an illness.

Persistently high levels of protein in urine may be a sign of kidney disease.”

The following definition is from MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=10691.

“Pathophysiology: Deranged function in an individual or an organ due to a disease.”

So, it looks like dehydration is a key factor in lowering the GFR during the summer heat. We know that dialysis patients need to limit their liquid intake, but what about those of us who are not on dialysis but do have CKD (Chronic Kidney Disease)?

I went to MedicalNewsToday at https://www.medicalnewstoday.com/articles/153363#symptoms for some facts about dehydration:

“Around three-quarters of the human body is water.

The causes of dehydration include diarrhea, vomiting, and sweating.

Individuals more at risk of dehydration include athletes, people at higher altitudes, and older adults.

Early symptoms of dehydration include dry mouth, lethargy, and dizziness.”

Did you notice “sweating” and for those of a certain age like me “older adults”?

So, I gather I’m sweating out more liquids than I’m taking in. But how does that work exactly? I thought I was drinking sufficient amounts of fluid.

Biology Online at https://www.biologyonline.com/dictionary/sweating was a bit of an eye opener.

“Sweating is a way of our body to regulate body temperature. It is commonly used as a synonym for perspiration but in stricter sense perspiration pertains to the water loss as a cooling mechanism of the body and therefore It (sic) includes both the release of watery, salty fluid through the pores of the skin from the sweat glands and the evaporation of water from the skin (trans-epithelial) and respiratory tract. Thus, there exist two forms of perspiration, the sensible and the insensible water loss. In sweating, the process always entails the loss of both water and solutes…. The salty fluid is secreted as droplets or moist on the skin and is called as sweat. Environmental cues that could stimulate the body to produce sweat are high temperature and humidity of the surroundings.”

Oh, solutes. Those include the electrolytes that are so important to us as CKD patients. Orthology at https://orthology.com/myth-debunked-need-electrolytes-work/ offers us a simple explanation:

“The warmer the weather and the more you sweat, the more likely you’ll need electrolyte replacement. Again, this is just a general guideline and will differ by individual, activity and other factors. Pay attention to signs that your electrolyte levels are too low, such as muscle cramps, fatigue, dizziness, nausea or mental confusion.”

Aha, it’s excessively hot out. We drink more, but more sweat is being produced the higher the temperature is. When we sweat or perspire (since the two words are often used interchangeably), we are also exuding electrolytes. Now it all makes sense. An imbalance of electrolytes could lower your GFR. I turned to Tampa Cardio at https://tampacardio.com/causes-electrolyte-imbalance-body/ for confirmation.

“Electrolyte imbalances can cause a wide range of symptoms, some mild and some potentially life threatening. Electrolyte imbalances are commonly caused by loss of fluids through prolonged diarrhea, vomiting, sweating or high fever.”

But we’re already having problems with our electrolytes. No wonder excessive heat affects our GFR. As the University of Michigan’s Michigan Medical at https://www.uofmhealth.org/conditions-treatments/kidney/fluid-and-electrolyte-disorders states:

“Changes in the body’s levels of minerals including potassium, magnesium, calcium and sodium—and the corresponding impact these have on the body’s function, muscle strength and heart rhythm can be associated with disorders of kidney or endocrine glands.

Got it. Let’s all just stay in the air conditioning so we don’t lower our GFRs even more than the excessive heat does. In Arizonia, that probably means until November this year. That was a joke (I hope).

Until next week,

Keep living your life!

Getting Ready  

As I mentioned last week, I am lucky enough to be cancer free now and have returned to my other specialists. But we are experiencing the Covid-19 pandemic which means most of my doctors are conducting telemedicine appointments.

What are those? Let’s go to my favorite dictionary, The Merriam-Webster Dictionary, and see what we can see. I found this at https://www.merriam-webster.com/dictionary/telemedicine:

“the practice of medicine when the doctor and patient are widely separated using two-way voice and visual communication (as by satellite or computer)”

Surprisingly, I also discovered this has been in use since 1968. Maybe that’s why the phone and/or iPad type devices weren’t mentioned in the definition.

Of course, if you need to be examined physically, you’ll have to go to the doctor’s office. For example, poor Bear needed several mole biopsies last week. Obviously, he had to present himself at his dermatologist’s office to have these procedures carried out.

But I’ve been fortunate to be able to stick with telemedicine. Yet, you’ve got to be prepared for such doctor appointments. Do you have a thermometer? You’ll be asked for your temperature. We use both the DTT (digital temple thermometer) and Target’s talking thermometer (for those days when neither of us can find our glasses… really.) It seems the DTT we use is no longer manufactured, but the updated one is only about $15.00. The talking ear digital thermometer is more expensive. That one runs about double the price of the DTT. I did discover that digital mouth thermometers can be as low as $8.00. Non-digital oral thermometers start at about $6.00 You can compare prices online for the best deal. However, we are apparently old fashioned. The newest form of temperature assessment is the no contact digital scan thermometer. This one starts at about $50.

So, you have your temperature reading ready. What else will you need? I’ve always been asked for my blood pressure and pulse. I use an arm, rather than a wrist, device since my family doctor explained to me that the wrist device takes a reading through two bones. Those are the radius and ulna. The arm device takes your reading through only one bone, the humerus. She feels a reading through only one bone is more accurate. What device do I use? No matter which ones I’ve experimented with, I always return to Omron. It’s easy to use and accurate. These run from about $33 to over $100, depending upon how fancy you want to go. This description is from Amazon’s mid-price Omron:

Platinum (new version)

  • Trusted brand – Omron is the #1 recommended home blood pressure monitor brand by doctors and pharmacists for clinically-accurate home monitoring, and the #1 selling manufacturer of home blood pressure monitors for over 40 years.
  • Unlimited memory and users with the free app – The Omron gold wrist monitor stores 200 total blood pressure readings for 2 users (100 per user, most of any Omron wrist blood pressure monitor). Memory and users are unlimited with the Omron connect free app which works with amazon alexa-enabled devices (on select IOS & android devices).
  • High morning average indicator – Among Omron Amazon-exclusive blood pressure monitors, this feature is unique to the Gold and Platinum monitors. The indicator alerts the user if systolic or diastolic measurements are out of normal range in the morning, when there is a higher risk for heart attack or stroke.
  • Dual display with backlight – The Omron Platinum monitor features a backlit dual-display LCD monitor with easy navigation that allows the user to immediately compare the current reading to the previous reading. The backlight feature is only available with the Platinum Monitor.
  • AC adapter included – The Omron Ac Adapter eliminates the worry of changing batteries in your Omron Blood Pressure Monitor. The convenient AC adapter helps make sure your monitor is ready whenever you are.”

What else now? Let me think for a minute. Of course, if you are prediabetic or diabetic, you’ll be asked for your latest blood sugar readings. Believe it or not, I prefer WalMart’s no nonsense, no frills ReliOn Prime blood glucose monitor. In case you didn’t know, WalMart also operates as Sam’s Club. For my non-U.S.A. readers, according to https://en.wikipedia.org/wiki/Walmart, Walmart International operates in these countries:

Let’s keep in mind that anyone can edit in Wikipedia, so be certain to check before you bank upon going.

My family doctor did prescribe another brand which is a bit fancier in that it has a nicer looking case, lancet ejector, and meter. It was also more expensive and a prescription was needed.

If this is all new to you, you need to know you not only need this kit (which contains the monitor, a lancing device for your lancets, and spaces to store both your test strips and needles), but also the afore mentioned test strips and lancing device. You can buy 100 ultra-thin lancets for under $3.00. I suggest ultra-thin because I’ve found the thinner the lancet, the less the poke to get that one drop of blood needed for testing hurts.

The test strips are another story. These are expensive. They usually cost a little less than $18.00 for 100. And the lancing device? That’s about $6.00. The monitor itself is $9.00. The case comes with your starter kit. I haven’t found one sold separately by Walmart, although Amazon has a few for other brands. The number of times you need to test your blood glucose daily determines the weekly cost of your supplies.

You’ll also be asked for your height and weight. I have to admit I’m partial to digital devices and so have a digital scale from Amazon. Their scales run from $18.00 to $35.00. Of course, non-digital will be less expensive.

As for the height, I guess I cheated. I looked up the most recent height recorded on my last doctor’s appointment and used that.

Conclusion: You’ll need your temperature, blood pressure, height, weight, – if you’re prediabetic or diabetic – your blood glucose, and a phone, iPad sort of device, or computer for your telemedicine appointment.  Now you’re ready.

May you only have good results.

Until next week,

Keep living your life!

Echo… Echo… Echo…

Remember that golden time I’ve mentioned before? The time when I problem solve and write in my head just as I’m waking up? Well, today the word was echo at that time. Echo? As in echo chamber? Echo Canyon? No, doesn’t feel right. Got it! Echocardiogram.

The English teacher in me is already delighted. Why? I know what most of the word means through my college study of Greek and Latin roots. Card means heart, io is simply a connective, and gram means write. What about echo you ask? I think we all know what that means in common usage, but in conjunction with cardiogram? Yep, time for some help.

The Merriam-Webster Dictionary, still my favorite, at https://www.merriam-webster.com/dictionary/ echocardiography tells us an echocardiogram is,

“the use of ultrasound to examine the structure and functioning of the heart for abnormalities and disease”

Let’s put in a little reminder of what an ultrasound is here. This is from MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=5897:

“A test in which high-frequency sound waves (ultrasound) are bounced off tissues and the echoes are converted into a picture (sonogram).”

Oh, like the picture of my grandson growing in his mom’s womb. Great, now what does this have to do with Chronic Kidney Disease? I just had an echocardiogram because my oncologist was concerned about the great distance between my diastolic (lower) and systolic (upper) numbers on my blood pressure readings. It was fine, but it did get me to thinking about what CKD and the heart have in common.

Here’s a reminder from Healthline at https://www.healthline.com/health/diastole-vs-systole#:~:text=Your%20systolic%20blood%20pressure%20is,bottom%20number%20on%20your%20reading of what the two numbers mean:

“Your systolic blood pressure is the top number on your reading. It measures the force of blood against your artery walls while your ventricles — the lower two chambers of your heart — squeeze, pushing blood out to the rest of your body.

Your diastolic blood pressure is the bottom number on your reading. It measures the force of blood against your artery walls as your heart relaxes and the ventricles are allowed to refill with blood. Diastole — this period of time when your heart relaxes between beats — is also the time that your coronary artery is able to supply blood to your heart.”

Got it. This next quote is a little medicalese, but basically it’s saying there are specific difficulties if you have both CKD and high blood pressure. It’s from Kidney International at https://www.kidney-international.org/article/S0085-2538(19)30276-5/fulltext :

“In CKD and ESKD, risk factors for HF include long-standing hypertension with often worsened blood pressure (BP) control as CKD worsens, salt and water retention causing excessive preload, and cardiomyopathic factors including left ventricular (LV) hypertrophy and fibrosis. In addition, there are CKD- and ESKD-specific factors that affect afterload (increased arterial stiffness and high output shunting through arteriovenous fistulae or grafts) as well as load-independent factors (neurohormonal activation, impaired iron utilization, anemia, demand ischemia, profibrotic factors [e.g., fibroblast growth factor 23 {FGF-23}], inflammation, etc.)…. Arteriovenous fistulae or grafts have been reported to worsen right ventricular hypertrophy, increase pulmonary pressures, associate with significant right ventricular dilatation, and reduce right ventricular function, which are closely linked to survival….”

An echocardiogram can show in real time if all the ventricles of your heart are working correctly as far as pumping blood and and/or leaking when your heart should be at rest.

Well, why get an echocardiogram if you already know you have CKD and high blood pressure? Here’s WebMD at https://www.webmd.com/heart-disease/guide/diagnosing-echocardiogram#4’s response.  You can find much more information there, too, as is true of all the sites mentioned.

“An echocardiogram can help your doctor diagnose several kinds of heart problems, including:

  • An enlarged heart or thick ventricles (the lower chambers)
  • Weakened heart muscles
  • Problems with your heart valves
  • Heart defects that you’ve had since birth
  • Blood clots or tumors”

Mayo Clinic at https://www.mayoclinic.org/tests-procedures/echocardiogram/about/pac-20393856 offers an easily understandable explanation of the actual process. There are many types of echocardiograms, but this is the most usual.

Transthoracic echocardiogram

In this standard type of echocardiogram:

  • A technician (sonographer) spreads gel on a device (transducer).
  • The sonographer presses the transducer firmly against your skin, aiming an ultrasound beam through your chest to your heart.
  • The transducer records the sound wave echoes from your heart.
  • A computer converts the echoes into moving images on a monitor.”

This is yet another reminder of why we need to have both the heart and kidneys functioning well. This one is from Heart.org at https://www.heart.org/en/health-topics/high-blood-pressure/health-threats-from-high-blood-pressure/how-high-blood-pressure-can-lead-to-kidney-damage-or-failure#:~:text=The%20:

  • Damaged kidney arteries do not filter blood well. Kidneys have small, finger-like nephrons that filter your blood. Each nephron receives its blood supply through tiny hair-like capillaries, the smallest of all blood vessels. When the arteries become damaged, the nephrons do not receive the essential oxygen and nutrients — and the kidneys lose their ability to filter blood and regulate the fluid, hormones, acids and salts in the body.
  • Damaged kidneys fail to regulate blood pressure. Healthy kidneys produce a hormone called aldosterone to help the body regulate blood pressure. Kidney damage and uncontrolled high blood pressure each contribute to a negative spiral. As more arteries become blocked and stop functioning, the kidneys eventually fail.”

The American Journal of Kidney Disease at https://www.ajkd.org/article/S0272-6386(18)30598-5/fulltext gives us these final words on why an echocardiogram could be necessary for certain CKD patients:

“Abnormal cardiac structure and function are common in chronic kidney disease (CKD) and end-stage renal disease (ESRD) and linked with mortality and heart failure.”

Topic change: We tried Flavis’s high protein spaghetti and found it just as light and delightful as their penne. This, I can endorse.

Oh, before I forget. I like to read… a lot. One of the books I read recently was Ray Flynt’s Transplanted Death. I don’t want to tell you too much about it, except that it is a well-written murder mystery with a good story that revolves around transplant recipients, two of them kidney recipients. I am recommending this book.

Until next week,

Keep living your life!

I Never Knew

I’ve already mentioned that I read a lot while undergoing chemotherapy for my pancreatic cancer. I don’t have the energy for much else, although I do find my energy slowly increasing day by day. Often, I come across words or terms that are new to me as I read. One such term is ‘hypertensive nephrosclerosis.’ That’s a mouthful, so let’s start slowly.

‘Hypertensive’ is not a problem since we know that hyper means,

hyper– a prefix appearing in loanwords from Greek, where it meant “over,” usually implying excess or exaggeration (hyperbole); on this model used, especially as opposed to hypo-, in the formation of compound words (hyperthyroid).”

Thank you, Dictionary.com at https://www.dictionary.com/browse/hyper-. A little reminder: a prefix is a group of letters added at the beginning of a word which changes its meaning. Aren’t you glad I was an English teacher for over forty years?

You’ve probably already figured out that ‘tensive’ has to do with some kind of tension. According to Dictionary.com again, but this time at https://www.dictionary.com/browse/tensive?s=ts, it means,

adjective

stretching or straining”

That is a sort of tension, so you’re right. Add the prefix to the root word and suffix and you get ‘hypertension.’ Maybe a little grammar lesson would help here. A suffix is a group of letters added at the end of a word that change its meaning by expressing tendency, disposition, function, connection, etc. (By the way, some of this was taken from – yep – Dictionary.com again. This time at https://www.dictionary.com/browse/-ive?s=t.) What else? Oh, yes, ‘root.’ That’s the main part of the word; in this word, it’s tens. I know, I know, you didn’t come here for a grammar lesson.

Good thing ‘nephrosclerosis’ is a compound word. We know all about ‘nephro’ since it means kidney. And ‘sclerosis?’ That means hardening. This is a good point to mention this can be fatal. A former colleague recently died of sclerosis.

So ‘nephrolsclerosis’ is a hardening of the kidneys. Let’s check that out just to be sure. According to MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=4533:

 Nephrosclerosis: A progressive disease of the kidneys that results from sclerosis (hardening) of the small blood vessels in the kidneys. Nephrosclerosis is most commonly associated with hypertension or diabetes and can lead to kidney failure.

With me so far? Just one more step, let’s add ‘hypertensive’ to ‘nephrosclerosis.’ Emedicine at https://emedicine.medscape.com/article/244342-overview tells us,

“The term hypertensive nephrosclerosis has traditionally been used to describe a clinical syndrome characterized by long-term essential hypertension, hypertensive retinopathy, left ventricular hypertrophy, minimal proteinuria, and progressive renal insufficiency. Most cases are diagnosed based solely on clinical findings….”

Okay, let’s break down the definition of what we just added together to understand this term. You already know what ‘hypertension’ and ‘proteinuria’ are from reading my blogs. If you forgot, use the click throughs in the above definition. That leaves ‘hypertensive retinopathy’ and ‘left ventricular hypertrophy’ since we also know what ‘progressive renal insufficiency’ is.

‘Hypertensive retinopathy’ is summarized by DoveMed, a new site for me whose stated mission is

“We provide reliable unbiased medical information to healthcare consumers and providers by leveraging our unique ecosystem of world class products and services.”

at https://www.dovemed.com/article-synonyms/stage-4-hypertensive-retinopathy/ in this manner:

  • “Hypertensive Retinopathy (HR) refers to abnormal changes of the retina that is located in the back of the eye, due to chronic hypertension (high blood pressure)
  • The retinal arteries are autoregulated, meaning they can control their own shape based on changes in systemic blood pressure. However, at extremely high blood pressures, such as a blood pressure of 140/110 mmHg or over, they are unable to autoregulate. This can result in retinal complications
  • Depending on the severity of the signs and symptoms, Hypertensive Retinopathy can be classified to 4 stages – stage 1, 2, 3, and 4. Stage 1 Hypertensive Retinopathy has mild signs and symptoms, whereas Stage 4 Hypertensive Retinopathy has severe signs and symptoms
  • These changes typically occur in individuals who have had very high blood pressure for several years. The signs and symptoms of Hypertensive Retinopathy may include leakage of fats from the blood vessels, retinal edema (fluid in the retina), and swelling of the optic nerves
  • Some of the complications can include lack of oxygen delivered to the retina, as well as swelling of the macula and optic nerve that can result in the vision being affected
  • The treatment typically consists of controlling systemic hypertension with medications. Prognosis is generally good for individuals with stage 1 or 2 Hypertensive Retinopathy”

That leaves ‘left ventricular hypertrophy.’ Have no fear! The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/left-ventricular-hypertrophy/symptoms-causes/syc-20374314 is here to help us out:

“Left ventricular hypertrophy is enlargement and thickening (hypertrophy) of the walls of your heart’s main pumping chamber (left ventricle).

Left ventricular hypertrophy can develop in response to some factor — such as high blood pressure or a heart condition — that causes the left ventricle to work harder. As the workload increases, the muscle tissue in the chamber wall thickens, and sometimes the size of the chamber itself also increases. The enlarged heart muscle loses elasticity and eventually may fail to pump with as much force as needed.

Left ventricular hypertrophy is more common in people who have uncontrolled high blood pressure. But no matter what your blood pressure is, developing left ventricular hypertrophy puts you at higher risk of a heart attack and stroke.

Treating high blood pressure can help ease your symptoms and may reverse left ventricular hypertrophy.”

Adding all this information together, it’s clear that hypertensive blood pressure is going to do you no good in any way. So what do we do to avoid high blood pressure? That’s right! And the CDC backs you up. Take a look at https://www.cdc.gov/bloodpressure/prevent.htm.

“Prevent High Blood Pressure

….Eat a Healthy Diet

Choose healthy meal and snack options to help you avoid high blood pressure and its complications. Be sure to eat plenty of fresh fruits and vegetables.

Talk with your health care team about eating a variety of foods rich in potassium, fiber, and protein and lower in salt (sodium) and saturated fat. For many people, making these healthy changes can help keep blood pressure low and protect against heart disease and stroke.

The DASH (Dietary Approaches to Stop Hypertension) eating plan is a healthy diet plan with a proven record of helping people lower their blood pressure….

Visit the CDC’s Nutrition, Physical Activity, and Obesity website to learn more about healthy eating and nutrition.

Keep Yourself at a Healthy Weight

Having overweight or obesity increases your risk for high blood pressure. To determine whether your weight is in a healthy range, doctors often calculate your body mass index (BMI). If you know your weight and height, you can calculate your BMI at CDC’s Assessing Your Weight website. Doctors sometimes also use waist and hip measurements to assess body fat.

Talk with your health care team about ways to reach a healthy weight, including choosing healthy foods and getting regular physical activity.

Be Physically Active

Physical activity can help keep you at a healthy weight and lower your blood pressure. The Physical Activity Guidelines for Americans recommends that adults get at least 2 hours and 30 minutes of moderate-intensity exercise, such as brisk walking or bicycling, every week. That’s about 30 minutes a day, 5 days a week. Children and adolescents should get 1 hour of physical activity every day.

Visit the website for CDC’s Division of Nutrition, Physical Activity, and Obesity to learn about ways you can be physically active.

Do Not Smoke

Smoking raises your blood pressure and puts you at higher risk for heart attack and stroke. If you do not smoke, do not start. If you do smoke, quitting will lower your risk for heart disease. Your doctor can suggest ways to help you quit.

For more information about tobacco use and quitting, see CDC’s Smoking and Tobacco Use Web site.

Limit How Much Alcohol You Drink

Do not drink too much alcohol, which can raise your blood pressure. Men should have no more than 2 alcoholic drinks per day, and women should have no more than 1 alcoholic drink per day. Visit the CDC’s Alcohol and Public Health website for more information.

Get Enough Sleep

Getting enough sleep is important to your overall health, and enough sleep is part of keeping your heart and blood vessels healthy. Not getting enough sleep on a regular basis is linked to an increased risk of heart disease, high blood pressure, and stroke…. Visit CDC’s Sleep and Sleep Disorders website for resources on how to get better sleep.”

Until next week,

Keep living your life!

Allow Me to Introduce You…

We all know I’m not the only one raising awareness about Chronic Kidney Disease. I’ve posted guest blogs from other writers, those who bring our plight to the attention of the government, manufacturers of products that may help us, and patients and/or donors themselves. But I realize I’m ‘old school.’ There are those who are more comfortable with other forms of social media, such as broadcasting shows. Hopefully, you haven’t seen the two YouTubes I created years ago. For an actor, they are awful. Others are doing a much better job of broadcasting than I can.

One such person is Steve L. Belcher. After I realized I’ve been seeing his name again and again on Facebook, I decided to ask him to guest blog. I certainly learned a lot from his blog and I hope you do, too. This is not a competition among Chronic Kidney Disease awareness advocates, but an informal coalition. We all want you to know as much as you can about this disease we share. Steve’s blog explains the background for all the shows he broadcasts. Kudos, my friend, kudos.

Urban Kidney Alliance, Inc. was founded and created September 2014 as a 501 (c) (3) grassroots nonprofit [Gail here. This has to do with restrictions on lobbying rights.] by Steve L. Belcher, RN, MSN, MS – a former dialysis nurse clinician – as a result of witnessing the lack of resources for kidney patients dialyzing in renal treatment facilities located in urban communities. Many patients undergoing kidney dialysis from urban communities are forced to make hard decisions between purchasing lifesaving medications or food to feed themselves or family members. Urban Kidney Alliance, Inc. initially assisted patients with financial needs for medications, transportation to and from treatment, utilities, and communication devices. Due to the enormous cost of assisting patients and lack of donations, Urban Kidney Alliance could no longer operate under this operational concept.

At this juncture Urban Kidney Alliance, Inc. decided to refocus its mission towards kidney disease education, collaboration, and advocacy. Urban Kidney Alliance, Inc. believes refocusing their mission will have a better impact on reaching communities and individuals at-risk for chronic kidney disease. Urban Kidney Alliance, Inc.’s goal is to reach three million people with their message of kidney disease awareness.

Before the inception of Urban Health Outreach, there was Urban Renal Talk with Tamika & Steve. On October, 2017, Tamika Ganues joined Urban Kidney Alliance, Inc. as Vice President of Operations. During our early beginnings, we began broadcasting Urban Renal Talk with Tamika and Steve from our cellphones to our Facebook Page. The Urban Renal Talk with Tamika and Steve broadcast was created to interview kidney patients and professionals making a difference in the chronic kidney disease community. Since the beginning Urban Renal Talk with Tamika and Steve has come a long way with over four hundred broadcast shows to date. Our shows consist of digital broadcasting, which is the distribution of audio or video content to a dispersed audience via any electronic mass communication medium.

As a result of the overwhelming positive response to Urban Renal Talk with Tamika & Steve, we decided to create a second show directed towards the transplant community called Sunday Morning Transplant Coffee. However, this wasn’t always the case. Our viewership began slowly. Many people haven’t heard of our show and the work we were doing to raise kidney disease awareness and education. The majority of our guests in the beginning were patients sharing their struggles and triumphs with kidney disease. As we began to be consistent with our shows, we were able to schedule and confirm professional guests on the show. Sunday Morning Transplant Coffee Talk was broadcast every Sunday from 11:00 am – 12:00 pm EDT and interviewed guests who were either transplant recipients, transplant donors, or had received a transplant which was later rejected.

January 2019 was the launch and creation of the Urban Health Outreach Media Network on Facebook, a subsidiary of Urban Kidney Alliance, Inc. Urban Health Outreach Media was created to be an online kidney disease education and awareness media broadcasting company to reach more people at-risk and affected by kidney disease globally. Currently, Urban Health Outreach Media broadcasts five shows during the week. The shows are:

The Lisa Baxter Show Sunday 8:00 PM – 8:30 PM

World Kidney News Sunday 9:00 PM – 10:00 PM

Smashing Kidney Disease Tuesday 8:00 PM – 9:00 PM

Warriors Quest Wednesday 8:30 PM – 9:30 PM

Urban Renal Talk with Tamika & Steve Thursday 9:00 PM – 10:00 PM

Kidney Stories 2 first and last Friday of each month from 8:00 PM -9:00 PM EST.

Each show has its own unique style and approach to addressing kidney disease. For example, Warriors Quest gives kidney patients seeking a living kidney donor transplant the opportunity to share their story and transplant hospital information in hopes of finding a donor.

We felt there was a need to create these shows to address the many aspects of kidney disease and the comorbidities associated with it such as diabetes and hypertension. Social media has become a focal point for millions of people to interact and socialize with each other across the country. Urban Kidney Alliance, Inc. wanted to draw on this population with the multiple shows. In addition, the multiple kidney disease groups on Facebook give us another way to disseminate our patient education to patients who undergo in center hemodialysis, home hemodialysis, peritoneal dialysis, and transplantation. Since the start of Urban Health Outreach Media, the shows have lived up to our expectations, yet we still have a long way to go. We measure the success of our shows by the increase in viewership over time.

The author Steve L. Belcher, RN, MSN, MS, DN-CM [Me again: This means Delegating Nurse/Case Manager.], has been affiliated with the kidney dialysis industry for over thirty-three years. He began his career in 1985 as a Patient Care Technician, and – in 1996 – started his career as a Dialysis Staff Nurse. In addition, Steve has worked at many dialysis clinics throughout the United States as a Dialysis Travel Nurse. Today, Steve L. Belcher, RN is the Executive Director of Urban Kidney Alliance, Inc. and resides in Washington, D.C.”

Steve, I salute you for all you do to bring CKD awareness to the rest of us. Thank you.

Lovely, Lovely Medicinal Food

A few weeks ago, I received some interesting emails from a company called Flavis. I hadn’t heard of them before, so I followed my curiosity and emailed back. It turns out they’re a company that produces low protein, potassium, phosphorous, and sodium carbohydrates. Hmmm, as Chronic Kidney Disease patients we need to keep a lid on our intake of these electrolytes. Could this company and others like them help?

They were kind enough to send samples of their wares. Some of it tasted like medicinal food, but oh those cookies. It would be dangerous for me to keep them in the house. My husband, who doesn’t have CKD, loved them, too. I enjoyed their pasta products, too. Now, lest you get the wrong idea, I am not endorsing this company because I don’t know what others like it are available. However, I wanted to know about their products… which may very well be similar to the products of other such companies and, therefore, helpful to CKD patients.

According to my thinking, logically the first thing to do was look at their website. You can find it at http://www.Flavis.com just as I did. I’m going to copy and paste the parts of their Chronic Kidney Disease material that will help us understand more about this product.

“FLAVIS kidney-friendly foods are starch-based and have reduced protein, phosphorus, sodium, and potassium content. They reduce the kidneys’ workload, and they have the same look, taste, and calorie Content as the foods they replace. These products include pasta, rice, bread, bread products (breadsticks, crostini, rolls, sliced bread, crackers), sweets, and flour. They are suitable for patients in all stages of CKD, especially in the conservative management at stage 3-4.”

I have to admit, the bread was not bad at all and, if Bear had liked the taste more, I would have been perfectly happy using only their pasta products. I liked their taste. Unfortunately, I automatically cooked the rice in the electric rice cooker, apparently a no-no, so I can’t say anything about the taste of the rice.

My goodness! I am endorsing Flavis. Why? Look what I found on the National Kidney Foundation website:

FLAVIS and the NKF Team-Up to Promote Kidney Health Through Diet

FLAVIS, the kidney friendly food brand, and the National Kidney Foundation partner to promote medical nutrition therapy to help maintain residual kidney function among chronic kidney disease patients

New York, NY – April 8, 2019 – Dr. Schar USA’s (Lyndhurst, NJ) kidney friendly food brand, FLAVIS is teaming up with the National Kidney Foundation to promote the benefits of special dietary foods for people with chronic kidney disease (CKD). FLAVIS, offering a wide portfolio of kidney friendly breads, pasta, snacks, and baking products provides nutrition solutions for patients following a diet low in protein, phosphorus, sodium and potassium, and support to kidney healthcare professionals. The National Kidney Foundation is the largest, most comprehensive and longstanding patient-centric organization dedicated to the awareness, prevention and treatment of kidney disease.

CKD affects 15% of the U.S. adult population. This disease progresses to higher stages as kidney function declines. Some studies show that medical nutrition therapy (MNT) using a low protein diet, under the direction of a nephrologist and registered dietitian nutritionist (RDN), may slow this decline. Through this partnership, FLAVIS and the National Kidney Foundation will provide educational outreach to healthcare professionals that promotes the importance of MNT and proper nutrition for CKD patients to improve dietary adherence and quality of life.

Medical nutrition therapy for CKD, as implemented by a registered dietitian nutritionist, emphasizes an individualized diet plan based upon each patient’s clinical status, goals, and preferences.  MNT for CKD patients includes one or more of the following: decreased sodium, phosphorus, and protein intake, along with sufficient energy, high fiber, and decreased saturated fat intake.  Potassium may also be restricted if the patient has high serum potassium levels. The benefits of MNT include decreasing the risk of complications from high blood pressure and diabetes, reduced uremic toxin levels, and preserved kidney function over time. Studies of MNT in Americans with CKD have shown only about 10% of those eligible receive this nutrition counseling support. FLAVIS’ products are a good source of energy and fiber, and are low in protein, sodium, phosphorus and potassium. These products may help people with CKD preserve kidney function and improve disease outcomes. In partnering with the National Kidney Foundation, FLAVIS aims to provide education and awareness about the benefits of MNT to promote improved quality of life in the CKD population.  For more information about this partnership visit kidney.org/FLAVIS.

Kidney Disease Facts

In the United States, 30 million adults are estimated to have chronic kidney disease—and most aren’t aware of it.  1 in 3 American adults are at risk for chronic kidney disease.  Risk factors for kidney disease include diabetes, high blood pressure, heart disease, obesity, and family history. People of African American, Hispanic, Native American, Asian, or Pacific Islander descent are at increased risk for developing the disease.  African Americans are 3 times more likely than Whites, and Hispanics are nearly 1.5 times more likely than non-Hispanics to develop end stage renal disease (kidney failure).”

 

I am happy to have found this. I remember – even though it was a decade ago – how hard it was to adapt my regular diet to the kidney diet and how often I had to respond, “No, thank you,” after asking the ingredients of a certain meal. Thank you Dr. Shar for helping my fellow CKD sufferers and me enjoy guilt free meals when we feel like having pasta.

By the way, I’m not ignoring COVID-19, I assure you. I’m sifting through all the information I can find before I write about it. As you know, that information changes daily. I’ve ordered my masks and searched out my gloves from the garage. I stay at home except when I have to go out for chemotherapy… and those trips concern me.

Until next week,

Keep living your life!

 

National Kidney Month is Almost Over

Welcome to the next to last day of National Kidney Month, 2020. Of course, that doesn’t mean you should stop taking care of your kidneys or spreading Chronic Kidney Disease awareness once National Kidney Month is over, but I don’t have to tell you that, do I? What I’d like to tell you about instead is the ins and outs of National Kidney Month.

In my latest book (Cancer has definitely slowed the arrival of SlowItDownCKD 2019, but soon, my friends, soon.) SlowItDownCKD 2018, I wrote:

“As usual, let’s start at the beginning. What is National Kidney Month? Personalized Cause at https://www.personalizedcause.com/health-awareness-cause-calendar/national-kidney-month has a succinct explanation for us. By the way, while I’m not endorsing them since the site is new to me, I should let you know they sell the green ribbons for National Kidney Month that you’ll probably be seeing hither and yon all month. [Added today: Come to think of it, some readers have asked me where to get CKD ribbons. This is what this site sells among other things.]

‘National Kidney Month, observed in March and sponsored by the National Kidney Foundation, is a time to increase awareness of kidney disease, promote the need for a cure, and spur advocacy on behalf of those suffeing [sic] with the emotional, financial and physical burden of kidney disease. The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease for hundreds of thousands of healthcare professionals, millions of patients and their families, and tens of millions of Americans at risk.’

That, of course, prompted me to go directly to the National Kidney Foundation’s information about National Kidney Month at https://www.kidney.org/news/monthly/Focus_KidneyMonth.

Focus on the Kidneys During National Kidney Month in March

March is National Kidney Month and the NKF is urging all Americans to give their kidneys a second thought and a well-deserved checkup. Kidneys filter 200 liters of blood a day, help regulate blood pressure and direct red blood cell production. But they are also prone to disease; 1 in 3 Americans is at risk for kidney disease due to diabetes, high blood pressure [Added today: This year’s theme for National Kidney Month is high blood pressure and your kidneys.] or a family history of kidney failure. There are more than 30 million Americans [Added today: 31 million this year] who already have kidney disease, and most don’t know it because there are often no symptoms until the disease has progressed….’

I wanted to share this quote from the American Kidney Fund with you, both as a CKD awareness advocate and a woman:

‘Kidney disease is a silent killer that disproportionately affects women who are often the primary caregivers for loved ones with the disease, are more likely to become living donors but less likely to receive a transplant, and are at higher risk for CKD,’ said LaVarne A. Burton, president and chief executive officer of AKF. ‘Because women with kidney disease may also face other health issues, including infertility, pregnancy complications, bone disease and depression, AKF is using Kidney Month to let women know we are here to support them and to provide resources that will answer their questions and concerns.’

The Renal Support Network at https://www.rsnhope.org/ is working even more emphatically to spread kidney disease awareness this month, too:

‘March is National Kidney Month. This is a special time set aside to raise awareness about kidney health and activities. RSN invites members of the kidney community, our friends and our families to join in the conversation.’

This on top of their usual. For those that are not familiar with this group, the following statement is from their website.

‘Since 1993 RSN has created and continues to produce a vast collection of information about kidney disease. Feel free to share our National Kidney Month page, a favorite story, KidneyTalk™ show or awareness image on social media using the hashtag #KidneyMonth and be sure to tag us @RSNhope.’

DaVita Kidney Care at https://www.davita.com/education/resources offers many resources (as the website’s URL assures us) to help understand both CKD and dialysis. Some of their offerings are:

If you click through on the link offered above, each item will open on a new page.”

This year (2019), I noticed that The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/community-health-outreach/national-kidney-month offers us even more information during National Kidney Month:

“March is National Kidney Month, a time when communities across the country raise awareness about kidney disease. In partnership with the National Heart, Lung, and Blood Institute (NHLBI), this year’s focus is the link between high blood pressure and kidney disease.

If you have high blood pressure, you’re at risk for chronic kidney disease, a serious condition that can lead to stroke, heart attack, kidney failure, and death.

The good news is that you can help protect your kidneys by managing high blood pressure with these 6 healthy lifestyle habits.

  1. Take medications as prescribed.  Your doctor may prescribe blood pressure-lowering medications that are effective in slowing the development of kidney disease.
  2. Aim for a healthy weight. If you are overweight or obese, losing even a small amount of weight can improve blood pressure readings.
  3. Select healthier food and beverage options.  Focus on fruits and vegetables, lean meat, whole grains, and other heart-healthy foods.
  4. Try to quit smoking. If you smoke, take steps to quit.
  5. Get enough sleep. Aim for 7 to 8 hours of sleep per night.
  6. Manage stress and make physical activity part of your routine. Consider healthy stress-reducing activities and get at least 30 minutes or more of physical activity each day.

Learn more about high blood pressure and kidney disease

As for me, I’ll blog my brains out until more and more people are aware of kidney disease. Same goes for the Instagram, Facebook, Twitter, Pinterest, and LinkedIn accounts. It’s all about kidney disease awareness.

Until next week,

Keep living your life!

Just in Time

I woke up this morning thinking about Audre Lorde. She was the New York State Poet at one time and considered herself a “lesbian, mother, warrior, poet,”but more importantly to me, my writing mentor and friend… and I miss her terribly. Thinking about Audre led me to thinking about my younger daughter (Abby) who won the Black History Month Essay Contest in her elementary school several years in a row by writing about Audre’s and my friendship.

That stopped me for a moment. Audre, Abby, Black History Month. This is Black History Month and it’s half over. Time to write about Black History in Nephrology today.

As Andrea Wurtzburger wrote in People Magazine (I knew there was a reason I grabbed this first each time I waited in one medical office or another.) in the February 13, 2020 issue which was also posted at https://www.yahoo.com/entertainment/black-history-month-explained-started-175250248.html,

Black History Month is an entire month devoted to putting a spotlight on African Americans who have made contributions to our country. Originally, it was seen as a way of teaching students and young people about the contributions of Black and African Americans in school, as they had (and still have) been often forgotten or left out of the narrative of the growth of America. Now, it is seen as a celebration of those who’ve impacted not just the country, but the world with their activism and achievements.”

Now that we know what Black History Month is, let’s see how we can apply it to the field of nephrology. This is what I wrote in SlowItDownCKD 2017 (February 7th) about Dr. Kountz:

“Samuel L. Kountz, M.D was another innovative contributor to Nephrology from the Black Community. As Blackpast.org tells us:

“In 1961 Kountz and Roy Cohn, another leading surgeon, performed the first successful kidney transplant between two people who were close relatives but not twins.  Over the next decade Kountz researched the process of kidney transplants on dogs.  He discovered that monitoring blood flow into the new kidney and administering methylprednisolone to the patient after surgery allowed the body to accept the new organ.

In 1966 Kountz joined the faculty at Stanford University Hospital and Medical School and in 1967 he became the chief of the kidney transplant service at University of California at San Francisco (UCSF).  There he worked with Folker Belzer to create the Belzer kidney perfusion machine.  This innovation kept kidneys alive for 50 hours after being removed from the donor.  Through Kountz’s involvement at UCSF, the institution’s kidney transplant research center became one the best in the country.  Kountz also created the Center for Human Values at UCSF, to discuss ethical issues concerning transplants.”

Kidney News Online at https://www.kidneynews.org/careers/resources/opinion-re-establishing-trust-and-improving-outcomes-in-nephrology introduced me to someone who should be noted in Black History Month in the future since the general public needs to be aware of Chronic Kidney Disease in order to be tested and, ultimately, treated. Dr. Bignall echoes my own thoughts.

“O. N. Ray Bignall II, MD is an Assistant Professor of Pediatrics in the Division of Nephrology at Nationwide Children’s Hospital and The Ohio State University College of Medicine. He is also a member of the American Society of Nephrology’s Policy and Advocacy Committee.

‘To re-establish trust and improve outcomes, we must carry health equity from “the bedside to the curbside.” From research and discovery, to policy and advocacy, nephrologists must engage directly with community members, stakeholders, and lawmakers. Minority communities need to see nephrologists in their schools, houses of worship, block parties, and community centers. We can increase our involvement in community-based participatory research (CBPR) that engages community members in the design, study, and implementation of evidence-based discovery. Nephrologists should also be taking our message to city halls, state houses, and our nation’s Capital to promote kidney disease research and advocacy for all our patients – especially those with disparate outcomes.’ ”

I felt compelled to include Dr. Charles DeWitt Watts who, while not a nephrologist, was eminent in breaking racial barriers so we could have Black nephrologists available to us. The following is from Duke University Medical Center and Library at https://guides.mclibrary.duke.edu/BlackHistoryMonth.

“Dr. Watts spent more than 50 years advocating for civil and human rights and for the quality of medical care for all residents of Durham, especially the poor and underserved. He broke racial barriers when he pushed for certification of black medical students.

First African American to be certified by a surgical specialty board in North Carolina.

Played key role in founding Lincoln Community Health Center, a free standing clinic, which served people regardless of their ability to pay.

Joined the staff of Lincoln Hospital as Chief of Surgery in 1950. Lincoln was one of the few American hospitals at the time that granted surgical privileges to African-American physicians.

Completed his surgical training at Freedman’s Hospital in Washington, DC under the tutelage of Dr. Charles Drew.

Worked to prepare Lincoln’s interns and residents for board certification and convinced Duke University Medical School to oversee Lincoln’s training program so that students could get board certified.

Fought along with other community leaders for the creation of one integrated public health care facility, Durham Regional Hospital, built in Durham in 1967. This led to the closing of both Watts and Lincoln hospitals.

Served as Adjunct Clinical Professor of Surgery at Duke and Director of Student Health at North Carolina Central University.

Served for 28 years as Vice President and Medical Director for North Carolina Mutual Life Insurance Co., the largest African-American managed insurer in the country.

Member of the National Academy of Science’s Institute of Medicine, a fellow in the American College of Surgeons, and an active participant in the National Medical Association.”

Until next week,

Keep living your life!

AKI & CKD

Aha! Dana contacted me and here’s the blog I promised him. (Still looking for the request from the woman who waited so patiently for me to recover from my surgery. Please contact me again.) Dana asked about AKI, Acute Kidney Injury, and how aggressively his nephrologist should be pursuing treatment of this. He and his nephrologist feel that his AKI may have been caused by strep.

I know I write about CKD, Chronic Kidney Disease, so what is AKI? The glossary in my very first CKD book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, tells us ‘acute’ means:

“Extremely painful, severe or serious, quick onset, of short duration; the opposite of chronic.” This is what I wrote about AKI and CKD in SlowItDownCKD 2017,

“I’d always thought that AKI and CKD were separate issues and I’ll bet you did, too. But Dr. L.S. Chawla and his co-writers based the following conclusion on the labor of epidemiologists and others. (Note: Dr. Chawla et al wrote a review article in the New England Journal of Medicine in 2014.)

‘Chronic Kidney Disease is a risk factor for acute kidney injury, acute kidney injury is a risk factor for the development of Chronic Kidney Disease, and both acute kidney injury and Chronic Kidney Disease are risk factors for cardiovascular disease. Not surprisingly, the risk factors for AKI {Once again, that’s acute kidney injury.} are the same as those for CKD… except for one peculiar circumstance. Having CKD itself can raise the risk of AKI 10 times.’

Whoa! If you’re Black, of an advanced age {Hey!}, or have diabetes, you already know you’re at risk for CKD, or are the one out of nine (Update: Now one out of seven.) in our country that has it. Once you’ve developed CKD, you’ve just raised the risk for AKI 10 times. I’m getting a little nervous here….

It makes sense, as researchers and doctors are beginning to see, that these are all connected. I’m not a doctor or a researcher, but I can understand that if you’ve had some kind of insult to your kidney, it would be more apt to develop CKD.

And the CVD risk? Let’s think of it this way. You’ve had AKI. That period of weakness in the kidneys opens them up to CKD. We already know there’s a connection between CKD and CVD (Cardiovascular Disease). Throw that AKI into the mix, and you have more of a chance to develop CVD whether or not you’ve had a problem in this area before. Let’s not go off the deep end here. If you’ve had AKI, you just need to be monitored to see if CKD develops and avoid nephrotoxic {Kidney poisoning} medications such as NSAIDS… contrast dyes, and radioactive substances. This is just so circular!

As with CKD, your hypertension and diabetes {if you have them.} need to be monitored, too. Then there’s the renal diet, especially low sodium foods. The kicker here is that no one knows if this is helpful in avoiding CKD after an AKI… it’s a ‘just in case’ kind of thing to help ward off any CKD and possible CVD from the CKD.”

Dana’s nephrologist put him on a regiment of prednisone for two months. Why? Well, prednisone is an anti-inflammatory drug. WebMD at https://www.webmd.com/a-to-z-guides/what-is-acute-kidney-failure#1 offers the following as possible causes of AKI. Notice the very last one and you’ll see how prednisone may be helpful.

  1. Something is stopping blood flow to your kidneys. It could be because of:
  1. You have a condition that’s blocking urine from leaving your kidneys. This could mean:
  1. Something has directly damaged your kidneys, like:

Now we know AKI and Acute Kidney Failure are not the same thing, but it is possible that this nephrologist is using prednisone in an attempt to avoid Acute Kidney Failure.

One thing Dana asked that made me stop cold is “How do you cope with the inevitable aspects?” They are not inevitable, Dana. I am a lay person who has managed to keep my CKD at stage 3 for 11 years. I am also not a magician. What I am is someone who follows the guidelines for keeping my kidneys as healthy as possible.

You’ve already seen a nutritionist – hopefully a renal nutritionist, since a healthy diet is not necessarily a renal healthy diet – so you’re aware of the nutrition aspect of protecting your kidneys. But there’s more. Do you smoke or drink? If so, stop. Do you exercise? If not, start… but with your nephrologist’s supervision. Are you getting adequate sleep and rest? Here’s the hardest guideline: try to avoid stress. Of course, if you have a stressful life, avoiding stress can just be another stress.

As to how aggressively you should expect your nephrologist to treat your AKI (or the CKD resulting from it) really depends upon you and your nephrologist. For example, some think stage 3 is barely CKD and urge you to just keep watch. Others, like my nephrologist, take CKD seriously and have their nutritionists train you re the renal diet and speak with you themselves about the guidelines. As for AKI, again it depends on you, your nephrologist, and the severity of the AKI. Since you have waste product buildup and inflammation, you may need dialysis or a hospital stay… or watchful waiting while taking a medication such as prednisone.’

There seems to be quite a lot of leeway as to the treatment you and your nephrologist decide upon.

Until next week,

Keep living your life!

Another Kind of Kidney Disease

While I’m still recuperating, I’ve had plenty of time to read Twitter articles, among other things. One topic I’ve been reading about is lupus nephritis. I think we’ve all heard of lupus, but just in case, here’s a definition from MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=8064.

“A chronic inflammatory disease that is caused by autoimmunity. Patients with lupus have in their blood unusual antibodies that are targeted against their own body tissues. Lupus can cause disease of the skin, heart, lungs, kidneys, joints, and nervous system.”

Did you catch the mention of kidneys in the above definition? That’s where the nephritis part of the condition comes in. By now, we’re all probably tired of being reminded that ‘neph’ means relating to the kidneys (although in non-medical terms, it means relating to the clouds) and ‘itis’ means inflammation. Nuts! I just reminded you again. Let’s ignore that. So, lupus nephritis actually means

“… a kidney disorder [which] is a complication of systemic lupus erythematosus.”

Thank you to MedlinePlus at https://medlineplus.gov/ency/article/000481.htm for the definition. Oh, “systemic lupus erythematosus” refers back to autoimmune disease. Still, the word “erythematosus” puzzled me. I finally figured it out after realizing I probably wasn’t going to get a definition since almost all the entries were for lupus erythematosus. Remember, I studied Greek & Latin roots way, way back in college. It means red and is from the Greek. I get it. Sometimes, lupus patients have a red rash in butterfly form across their face.

So, how do you develop this particular kidney disease? What better place to find out than Lupus.org at https://www.lupus.org/resources/how-lupus-affects-the-renal-kidney-system#.

“Inflammation of the nephrons, the structures within the kidneys that filter the blood, is called glomerulonephritis, or nephritis. Lupus nephritis is the term used when lupus causes inflammation in your kidneys, making them unable to properly remove waste from your blood or control the amount of fluids in your body.”

Hmmm, no lupus equals no lupus nephritis. However, if you do have lupus, you may develop lupus nephritis.

Let’s say hypothetically that you or a loved one (or even your neighbor down the block) has lupus and is concerned about developing lupus nephritis. How would they know if they were developing it? I had to look no further than the National Kidney Foundation at https://www.kidney.org/atoz/content/lupus.

“Lupus nephritis can cause many signs and symptoms and may be different for everyone. Signs of lupus nephritis include:

  • Blood in the urine (hematuria): Glomerular disease can cause your glomeruli to leak blood into your urine. Your urine may look pink or light brown from blood.
  • Protein in the urine (proteinuria): Glomerular disease can cause your glomeruli to leak protein into your urine. Your urine may be foamy because of the protein.
  • Edema: Having extra fluid that your kidneys cannot remove that causes swelling in body parts like your legs, ankles, or around your eyes.
  • Weight gain: due to the fluid your body is not able to get rid of.
  • High blood pressure

I know these may also be the symptoms of Chronic Kidney Disease, but if you have lupus, then they may be symptoms of lupus nephritis. To make things even more complicated, there are five different kinds of lupus nephritis depending upon which part of the kidney is affected.

I was wondering about tests to diagnose lupus nephritis, like we have blood and urine tests to diagnose CKD. Healthline (Now do you see why I was so thrilled to receive their Best Kidney Blogs Award two years in a row?) at https://www.healthline.com/health/lupus-nephritis#diagnosis cleared that up.

Blood tests

Your doctor will look for elevated levels of waste products, such as creatinine and urea. Normally, the kidneys filter out these products.

24-hour urine collection

This test measures the kidney’s ability selectively to filter wastes. It determines how much protein appears in urine over 24 hours.

Urine tests

Urine tests measure kidney function. They identify levels of:

  • protein
  • red blood cells
  • white blood cells

Iothalamate clearance testing

This test uses a contrast dye to see if your kidneys are filtering properly.

Radioactive iothalamate is injected into your blood. Your doctor will then test how quickly it’s excreted in your urine. They may also directly test how quickly it leaves your blood. This is considered to be the most accurate test of kidney filtration speed.

Kidney biopsy

Biopsies are the most accurate and also most invasive way to diagnose kidney disease. Your doctor will insert a long needle through your abdomen and into your kidney. They’ll take a sample of kidney tissue to be analyzed for signs of damage.

Ultrasound

Ultrasounds use sound waves to create a detailed image of your kidney. Your doctor will look for anything abnormal in the size and shape of your kidney.

Yes, I know these are the same tests that are used to diagnose CKD, but if you have lupus, they also can diagnose lupus nephritis.

Okay, now the biggie: How do you treat it if you do have it? The MayoClinic at  https://www.mayoclinic.org/diseases-conditions/lupus-nephritis/diagnosis-treatment/drc-20446438 had some sobering news for us:

“There’s no cure for lupus nephritis. Treatment aims to:

  • Reduce symptoms or make symptoms disappear (remission)
  • Keep the disease from getting worse
  • Maintain remission
  • Avoid the need for dialysis or a kidney transplant

Conservative treatments

In general, doctors may recommend these treatments for people with kidney disease:

  • Diet changes. Limiting the amount of protein and salt in your diet can improve kidney function.
  • Blood pressure medications. Drugs called angiotensin-converting enzyme (ACE) inhibitors and angiotensin II receptor blockers (ARBs) can help control blood pressure. These drugs also prevent protein from leaking from the kidneys into the urine. Drugs called diuretics can help you get rid of excess fluid.

However, conservative treatment alone isn’t effective for lupus nephritis.

Immune suppressants

For severe lupus nephritis, you might take drugs that slow or stop the immune system from attacking healthy cells, such as:

  • Steroids, such as prednisone
  • Cyclosporine
  • Tacrolimus
  • Cyclophosphamide
  • Azathioprine (Imuran)
  • Mycophenolate (CellCept)
  • Rituximab (Rituxan)

When immunosuppressive therapies don’t lead to remission, clinical trials may be available for new therapies.

Treatment options for kidney failure

For people who progress to kidney failure, treatment options include:

  • Dialysis. Dialysis helps remove fluid and waste from the body, maintain the right balance of minerals in the blood, and manage blood pressure by filtering your blood through a machine.
  • Kidney transplant. You may need a new kidney from a donor if your kidneys can no longer function.”

Help! Running out of room (but we’re done anyway),

Until next week,

Keep living your life!

Is it Blood Sugar or the Pancreas?

We all know diabetes raises your risk of developing Chronic Kidney Disease. But why? What’s the mechanism behind the fact? As far as I’m concerned, it’s time to find out.

Let’s start with diabetes. The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the National Institutes of Health (NIH), which in turn is part of The U.S. Department of Health and Human Services at https://www.niddk.nih.gov/health-information/diabetes/overview/what-is-diabetes offers this explanation.

“Diabetes is a disease that occurs when your blood glucose, also called blood sugar, is too high. Blood glucose is your main source of energy and comes from the food you eat. Insulin, a hormone made by the pancreas, helps glucose from food get into your cells to be used for energy. Sometimes your body doesn’t make enough—or any—insulin or doesn’t use insulin well. Glucose then stays in your blood and doesn’t reach your cells.

Over time, having too much glucose in your blood can cause health problems. Although diabetes has no cure, you can take steps to manage your diabetes and stay healthy.

Sometimes people call diabetes ‘a touch of sugar’ or ‘borderline diabetes.’”

Having just had a tumor removed from my pancreas, I’m well aware that it produces insulin as well as digestive enzymes. Without a pancreas to produce insulin, you would need insulin injections several times a day.

I got what diabetes is, but how it causes CKD was still not clear.

Well, not until I read the following from The American Diabetes Association at https://www.diabetes.org/diabetes/complications/kidney-disease-nephropathy.

“When our bodies digest the protein we eat, the process creates waste products. In the kidneys, millions of tiny blood vessels (capillaries) with even tinier holes in them act as filters. As blood flows through the blood vessels, small molecules such as waste products squeeze through the holes. These waste products become part of the urine. Useful substances, such as protein and red blood cells, are too big to pass through the holes in the filter and stay in the blood.

Diabetes can damage this system. High levels of blood sugar make the kidneys filter too much blood. All this extra work is hard on the filters. After many years, they start to leak and useful protein is lost in the urine. Having small amounts of protein in the urine is called microalbuminuria.

When kidney disease is diagnosed early, during microalbuminuria, several treatments may keep kidney disease from getting worse. Having larger amounts of protein in the urine is called macroalbuminuria. When kidney disease is caught later during macroalbuminuria, end-stage renal disease, or ESRD, usually follows.

In time, the stress of overwork causes the kidneys to lose their filtering ability. Waste products then start to build up in the blood. Finally, the kidneys fail. This failure, ESRD, is very serious. A person with ESRD needs to have a kidney transplant or to have the blood filtered by machine (dialysis).”

Hmmm, now that we know what diabetes is and how it can cause CKD, maybe we need to look at ways to attempt to avoid diabetes.

  • Losing weight and keeping it off. Weight control is an important part of diabetes prevention. You may be able to prevent or delay diabetes by losing 5 to 10 percent of your current weight. For example, if you weigh 200 pounds, your goal would be to lose between 10 to 20 pounds. And once you lose the weight, it is important that you don’t gain it back.
  • Following a healthy eating plan. It is important to reduce the amount of calories you eat and drink each day, so you can lose weight and keep it off. To do that, your diet should include smaller portions and less fat and sugar. You should also eat a variety of foods from each food group, including plenty of whole grains, fruits, and vegetables. It’s also a good idea to limit red meat, and avoid processed meats.
  • Get regular exercise. Exercise has many health benefits, including helping you to lose weight and lower your blood sugar levels. These both lower your risk of type 2 diabetes. Try to get at least 30 minutes of physical activity 5 days a week. If you have not been active, talk with your health care professional to figure out which types of exercise are best for you. You can start slowly and work up to your goal.
  • Don’t smoke. Smoking can contribute to insulin resistance, which can lead to type 2 diabetes. If you already smoke, try to quit.
  • Talk to your health care provider to see whether there is anything else you can do to delay or to prevent type 2 diabetes. If you are at high risk, your provider may suggest that you take one of a few types of diabetes medicines.”

This is a list from NIH: National Institute of Diabetes and Digestive and Kidney Diseases posted on MedLinePlus at https://medlineplus.gov/howtopreventdiabetes.html. Notice it’s mentioned that this is for type 2 diabetes.

There are 11 different kinds of diabetes. Types 1 and 2 are the most common. WebMD at https://www.webmd.com/diabetes/guide/types-of-diabetes-mellitus#1 explains what type 1 and 2 are.

Type 1 diabetes is an autoimmune condition. It’s caused by the body attacking its own pancreas with antibodies. In people with type 1 diabetes, the damaged pancreas doesn’t make insulin…. With Type 2 diabetes, the pancreas usually produces some insulin. But either the amount produced is not enough for the body’s needs, or the body’s cells are resistant to it. Insulin resistance, or lack of sensitivity to insulin, happens primarily in fat, liver, and muscle cells.”

This is all starting to make sense.

Until next week,

Keep living your life!

HIV and CKD

Every morning, although I don’t have enough energy yet to create original posts, I peruse the Facebook Chronic Kidney Disease pages, Twitter, Instagram, and even LinkedIn for current information about CKD. I was surprised to see a post seeming to claim that Human Immunodeficiency Virus (HIV) can cause CKD. How had I never heard about this before?

As usual when I don’t know or understand something, I decided to investigate. My first stop was The National Institutes of Health at https://aidsinfo.nih.gov/understanding-hiv-aids/fact-sheets/26/99/hiv-and-kidney-disease.

  • “The kidneys are two fist-sized organs in the body that are located near the middle of the back on either side of the spine. The main job of the kidneys is to filter harmful waste and extra water from the blood. (We know that already.)
  • Injury or disease, including HIV infection, can damage the kidneys and lead to kidney disease.
  • High blood pressure and diabetes are the leading causes of kidney disease. In people with HIV, poorly controlled HIV infection and coinfection with the hepatitis C virus (HCV) also increase the risk of kidney disease.
  • Some HIV medicines can affect the kidneys. Health care providers carefully consider the risk of kidney damage when recommending specific HIV medicines to include in an HIV regimen.
  • Kidney disease can advance to kidney failure. The treatments for kidney failure are dialysis and a kidney transplant. Both treatments are used to treat kidney failure in people with HIV.”

Well, I knew there was a possibility of Acute Kidney Injury (AKI) leading to CKD, but HIV? What’s that? Oh, sorry, of course I’ll explain what HIV is. Actually, it’s not me doing the explaining, but the Center for Disease Control (CDC) at https://www.cdc.gov/hiv/basics/whatishiv.html.

“HIV stands for human immunodeficiency virus. It is the virus that can lead to acquired immunodeficiency syndrome or AIDS if not treated. Unlike some other viruses, the human body can’t get rid of HIV completely, even with treatment. So once you get HIV, you have it for life.

HIV attacks the body’s immune system, specifically the CD4 cells (T cells), which help the immune system fight off infections. Untreated, HIV reduces the number of CD4 cells (T cells) in the body, making the person more likely to get other infections or infection-related cancers. Over time, HIV can destroy so many of these cells that the body can’t fight off infections and disease. These opportunistic infections or cancers take advantage of a very weak immune system and signal that the person has AIDS, the last stage of HIV infection.

No effective cure currently exists, but with proper medical care, HIV can be controlled. The medicine used to treat HIV is called antiretroviral therapy or ART.  If people with HIV take ART as prescribed, their viral load (amount of HIV in their blood) can become undetectable. If it stays undetectable, they can live long, healthy lives and have effectively no risk of transmitting HIV to an HIV-negative partner through sex. Before the introduction of ART in the mid-1990s, people with HIV could progress to AIDS in just a few years. Today, someone diagnosed with HIV and treated before the disease is far advanced can live nearly as long as someone who does not have HIV.”

So, it’s not only HIV itself that can cause CKD, but also the drugs used to treat HIV.

The National Kidney Foundation at https://www.kidney.org/atoz/content/hiv-and-chronic-kidney-disease-what-you-need-know  offers some ideas about how to avoid CKD if you have HIV:

“Many people with HIV do not get kidney disease or kidney failure. Talk to your health care provider about your chances of getting kidney disease. If you have HIV, you can lower your chances by:

  • Checking your blood pressure as often as your doctor recommends and taking steps to keep it under control
  • Taking all your HIV medications as prescribed
  • Asking your doctor about HIV drugs that have a lower risk of causing kidney damage
  • Controlling your blood sugar if you have diabetes
  • Taking medicines to control your blood glucose, cholesterol, anemia, and blood pressure if your doctor orders them for you
  • Asking your doctor to test you for kidney disease at least once each year if you:
    • Have a large amount of HIV in your blood
    • Have a low level of blood cells that help fight HIV (CD4 cells)
    • Are African American, Hispanic American, Asian, Pacific Islander, or American Indian
    • Have diabetes, high blood pressure, or hepatitis C”

It seems to me that avoiding CKD if you have HIV is almost the same as taking care of your CKD if you didn’t have HIV, except for the specific HIV information.

I now understand why it’s so important to take the hepatitis C vaccine. I turned to UpToDate at https://www.uptodate.com/contents/treatment-of-chronic-hepatitis-c-virus-infection-in-the-hiv-infected-patient for further information about hepatitis C and HIV.

“The consequences of hepatitis C virus (HCV) infection in HIV-infected patients are significant and include accelerated liver disease progression, high rates of end-stage liver disease, and shortened lifespan after hepatic decompensation, in particular among those with more advanced immunodeficiency …. In the era of potent antiretroviral therapy, end-stage liver disease remains a major cause of death among HIV-infected patients who are coinfected with HCV ….”

Remember that drugs leave your body via either your liver or kidneys. If your kidneys are already compromised by HIV or the medications used to treat your HIV, you need a high functioning liver. If your liver is compromised by hepatitis C, you need high functioning kidneys. I was unable to determine just what high functioning meant as far as your kidneys or liver, so if you find out, let us know.

Please be as careful as possible to avoid HIV, and if you do have it, pay special attention to being treated for it. I’d like it if you were one of the people who is “diagnosed with HIV and treated before the disease is far advanced [so that you] can live nearly as long as someone who does not have HIV.”

Until next week,

Keep living your life!

Dapagliflozin/SGLT2 inhibitors

I’ve been reading a lot about dapagliflozin lately. That’s a word I didn’t know. And this is the perfect opportunity to learn about it. Ready? Let’s start.

The obvious first stop to my way of thinking was Medline Plus, part of the U.S. Library of Medicine, which in turn, is part of the Institutes of National Health at https://medlineplus.gov/druginfo/meds/a614015.html.

“Dapagliflozin is used along with diet and exercise, and sometimes with other medications, to lower blood sugar levels in patients with type 2 diabetes (condition in which blood sugar is too high because the body does not produce or use insulin normally). Dapagliflozin is in a class of medications called sodium-glucose co-transporter 2 (SGLT2) inhibitors. It lowers blood sugar by causing the kidneys to get rid of more glucose in the urine. Dapagliflozin is not used to treat type 1 diabetes (condition in which the body does not produce insulin and, therefore, cannot control the amount of sugar in the blood) or diabetic ketoacidosis (a serious condition that may develop if high blood sugar is not treated).

Over time, people who have diabetes and high blood sugar can develop serious or life-threatening complications, including heart disease, stroke, kidney problems, nerve damage, and eye problems. Taking dapagliflozin, making lifestyle changes (e.g., diet, exercise, quitting smoking), and regularly checking your blood sugar may help to manage your diabetes and improve your health. This therapy may also decrease your chances of having a heart attack, stroke, or other diabetes-related complications such as kidney failure, nerve damage (numb, cold legs or feet; decreased sexual ability in men and women), eye problems, including changes or loss of vision, or gum disease. Your doctor and other healthcare providers will talk to you about the best way to manage your diabetes.”

SGLT2 inhibitors? Hey, that was going to be next week’s blog… or so ignorant me thought. The Food and Drug Administration (FDA) at https://www.fda.gov/drugs/postmarket-drug-safety-information-patients-and-providers/sodium-glucose-cotransporter-2-sglt2-inhibitors explains what a SGLT2 inhibitor is.

“SGLT2 inhibitors are a class of prescription medicines that are FDA-approved for use with diet and exercise to lower blood sugar in adults with type 2 diabetes. Medicines in the SGLT2 inhibitor class include canagliflozin, dapagliflozin, and empagliflozin. They are available as single-ingredient products and also in combination with other diabetes medicines such as metformin. SGLT2 inhibitors lower blood sugar by causing the kidneys to remove sugar from the body through the urine. The safety and efficacy of SGLT2 inhibitors have not been established in patients with type 1 diabetes, and FDA has not approved them for use in these patients.”

There are also quite a few warnings about amputations and urinary tract infections caused by SGLT2 inhibitors on this site, although they are dated 8/20/18.

 

So it seems that dapagliflozin is one of several medications classified as SGLT2 inhibitor. So let’s concentrate on SGLT2s inhibitors then. Hmmm, is this some medication requiring injections or do you just pop a pill? Pharmacy Times at https://www.pharmacytimes.com/publications/health-system-edition/2014/september2014/sglt2-inhibitors-a-new-treatment-option-for-type-2-diabetes more than answered my question. It’s their chart you see above this paragraph.

Wait a minute. According to their chart, dapagliflozin is not recommended if your GFR is below 60, or stage 3 CKD. Canagliflozin is not recommended if your GFR is below 45. Your kidney function is a big factor in whether or not this drug can be prescribed for you.

But why? Exactly how do the kidneys process this drug? The following diagram from The National Center for Biotechnology Information, part of the U.S. National Library, which in turn (again) is part of the National Institutes of Health at https://www.ncbi.nlm.nih.gov/core/lw/2.0/html/tileshop_pmc/tileshop_pmc_inline.html?title=Click%20on%20image%20to%20zoom&p=PMC3&id=3889318_13300_2013_42_Fig1_HTML.jpg will give you the visual. Basically, the SLGT2 inhibitor prevents the glucose in your blood from re-entering your blood stream after your blood has been filtered. The glucose has nowhere to go, so it exits your body via your urine along with the other wastes.

What about the side effects, since we already know the limitations of prescribing SLTG2 inhibitors? I thought  WebMd at  https://www.medicinenet.com/sglt2_inhibitors_type_2_diabetes_drug_class/article.htm#how_do_sglt2_inhibitors_work might enlighten us and they certainly did.

”On Aug. 29, 2018, the FDA issued a warning that cases of a rare but serious infection of the genitals and area around the genitals have been reported with the class of type 2 diabetes medicines called SGLT2 inhibitors. This serious rare infection, called necrotizing fasciitis of the perineum, is also referred to as Fournier’s gangrene.

SGLT2 inhibitors are FDA-approved for use with diet and exercise to lower blood sugar in adults with type 2 diabetes. SGLT2 inhibitors lower blood sugar by causing the kidneys to remove sugar from the body through the urine. First approved in 2013, medicines in the SGLT2 inhibitor class include canagliflozin, dapagliflozin, empagliflozin, and ertugliflozin. In addition, empagliflozin is approved to lower the risk of death from heart attack and stroke in adults with type 2 diabetes and heart disease. Untreated, type 2 diabetes can lead to serious problems, including blindness, nerve and kidney damage, and heart disease.

Seek medical attention immediately if you experience any symptoms of tenderness, redness, or swelling of the genitals or the area from the genitals back to the rectum, and have a fever above 100.4 F or a general feeling of being unwell. These symptoms can worsen quickly, so it is important to seek treatment right away.

On May 15, 2015, the FDA informed the public that SGLT2 inhibitors have been associated with increased risk of ketoacidosis in people with diabetes.

Common side effects

The most common side effect of SGLT2 inhibitors include:

Serious side effects of SGLT2 inhibitors include:

Whoa. It looks like there will have to be some serious discussions with your nephrologist before you agree to taking a SLGT2 inhibitor should he or she suggest it. Make sure you have your list of questions ready and someone to listen carefully and take notes.

Until next week,

Keep living your life!

It’s Like the Sahara in There

I like my dentist, especially when he tells me something I didn’t know. When I went to see him last time, I told him my chemo experience and how dry my mouth was. I thought they might be related. He patiently gave me the same information as the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/dry-mouth/symptoms-causes/syc-20356048.

“Dry mouth, or xerostomia (zeer-o-STOE-me-uh), refers to a condition in which the salivary glands in your mouth don’t make enough saliva to keep your mouth wet. Dry mouth is often due to the side effect of certain medications or aging issues or as a result of radiation therapy for cancer. Less often, dry mouth may be caused by a condition that directly affects the salivary glands.

Saliva helps prevent tooth decay by neutralizing acids produced by bacteria, limiting bacterial growth and washing away food particles. Saliva also enhances your ability to taste and makes it easier to chew and swallow. In addition, enzymes in saliva aid in digestion.

Decreased saliva and dry mouth can range from being merely a nuisance to something that has a major impact on your general health and the health of your teeth and gums, as well as your appetite and enjoyment of food.

Treatment for dry mouth depends on the cause.”

The joke’s on me. I developed dry mouth before the radiation treatments began. At least my salivary glands weren’t having any issues of their own. It seems we discussed xerostomia at the right time.

Wait a minute. Something is pulling on my memory. Something about Chronic Kidney Disease and dry mouth. Of course, periodontics and CKD. The Journal Of Clinical Periodontology at https://onlinelibrary.wiley.com/action/doSearch?AllField=chronic+kidney+disease&SeriesKey=1600051x had just what I was trying to remember. By the way, this is a fascinating free online library by John Wiley, a publisher I remember well from when I worked as an educator.

“Periodontitis had significant direct effect, and indirect effect through diabetes, on the incidence of CKD. Awareness about systemic morbidities from periodontitis should be emphasized.”

In other words, if you have CKD or diabetes, make certain your dentist knows so he or she can monitor you for the beginning of periodontic problems. Just as with any other medical issue, the sooner you start treatment, the better. I can attest to this since I caught my pancreatic cancer early, which gave me a much better chance of eradicating it from my body.

The treatment for dry mouth seems simple enough, as explained by Healthline (Thank you again for the two awards!) at https://www.healthline.com/symptom/dry-mouth.

“Dry mouth is usually a temporary and treatable condition. In most cases, you can prevent and relieve symptoms of dry mouth by doing one or more of the following:

  • sipping water often
  • sucking on ice cubes
  • avoiding alcohol, caffeine, and tobacco
  • limiting your salt and sugar intake
  • using a humidifier in your bedroom when you sleep
  • taking over-the-counter saliva substitutes
  • chewing sugarless gum or sucking on sugarless hard candy
  • over- the-counter toothpastes, rinses, and mints

If your dry mouth is caused by an underlying health condition, you may require additional treatment. Ask your doctor for more information about your specific condition, treatment options, and long-term outlook.”

The sugarless gum works well for me and, as an added benefit, quelled the nausea from the radiation treatments, too. While I don’t drink or smoke, I will have an occasional half cup of coffee when I can tolerate it. I didn’t know this was something to be avoided. As both a CKD patient and a type 2 diabetic (Thanks, pancreatic cancer.), I was already avoiding salt and sugar. So, without realizing it, I was already helping myself deal with dry mouth. Lucky me.

That got me to thinking. What other problems could dry mouth cause? I went to NHS Inform at https://www.nhsinform.scot/illnesses-and-conditions/mouth/dry-mouth to look for an answer. Indeed, this is a Scottish website, but a mouth is a mouth no matter where it’s located, right?

  • “a burning sensation or soreness in your mouth
  • dry lips
  • bad breath (halitosis)
  • a decreased or altered sense of taste
  • recurrent mouth infections, such as oral thrush
  • tooth decay and gum disease
  • difficulty speaking, eating or swallowing”

On a personal note, I found the halitosis embarrassing and the altered sense of taste frustrating. And here, I’d been blaming the chemo for that. Maybe it was the chemo, although my age could also be the cause of my dry mouth. I do admit that 72 could be considered “aging.” My husband orders the groceries and we now have a pantry full of food I used to love but all taste, well, funny now. Poor guy, he was just trying to get me to eat when he ordered the food. He knew calorie intake is important when you’re dealing with cancer.

I wondered what the symptoms of dry mouth were… well, other than a dry mouth, that is.

“Common symptoms include:

  • A sticky, dry feeling in the mouth
  • Frequent thirst
  • Sores in the mouth; sores or split skin at the corners of the mouth; cracked lips
  • A dry feeling in the throat
  • A burning or tingling sensation in the mouth and especially on the tongue
  • A dry, red, raw tongue
  • Problems speaking or trouble tasting, chewing, and swallowing
  • Hoarseness, dry nasal passages, sore throat
  • Bad breath

Thank you to WebMD at https://www.webmd.com/oral-health/guide/dental-health-dry-mouth#1 for the above information.

Will you look at that! Just as diabetes can cause CKD and CKD can cause diabetes, bad breath (halitosis), soreness or burning sensation in the mouth can both be symptoms of dry mouth and problems caused by dry mouth.

Let’s see now. What else can I tell you about dry mouth? DentistryIQ at https://www.dentistryiq.com/clinical/oral-cancer/article/16356305/facts-about-dry-mouth is a new site for me. They describe themselves as “… a leading source of information that helps dental professionals achieve excellence in their positions, whether that position is dentist, dental practice owner, dental hygienist, dental office manager, dental assistant, or dental school student.” I went there to find out just how many people suffer from dry mouth.

“It is estimated to affect millions of people in the United States, particularly women and the elderly…. Current research indicates that approximately one in four adults suffer from dry mouth, and this figure increases to 40 percent in populations over the age of 55….”

This was back in 2006, and unfortunately are the most current figures I could find. Please let us know if you can find more current numbers.

Personal note: Tomorrow I will be having surgery to remove the pancreatic cancerous tumor I’ve been dealing with since last February. The blogs will be posted right on time, but comments, emails, etc. probably won’t be answered for a while. I’ve been told this is an arduous surgery with a long, slow recovery period. Keep well until we can communicate again.

Until next week,

Keep living your life!

How Will They Know?

Let’s start this month with a guest blog by American Medical Alert IDs. Why? Although I am not endorsing this particular brand, because I clearly remember being give Sulphur drugs in the Emergency Room when I was by myself and unable to let the medical staff there know I have Chronic Kidney Disease. Why? Because I remember that my husband fell when I was out of town. His grown children took him to the emergency room but didn’t know about his latex allergy and he was in no condition to explain.

 

Everything You Need To Know About Medical Alert IDs for Chronic Kidney Disease


Are you debating on getting a medical alert ID for chronic kidney disease? It’s time to take the confusion out of choosing and engraving a medical ID. This post will show you everything you need to know so you can enjoy the benefits of wearing one.

Why Kidney Patients Should Wear a Medical Alert ID

A medical ID serves as an effective tool to alert emergency staff of a patient’s special care needs, even when a person can’t speak for themselves. When every second counts, wearing a medical ID can help protect the kidney and safeguard its remaining function.

In emergencies, anyone diagnosed with chronic kidney disease or kidney failure may require special medical attention and monitoring. It is important that patients are able to communicate and identify their medical condition at all times. This includes individuals who are:

  • Undergoing in-center hemodialysis
  • Undergoing home hemodialysis
  • On Continuous Ambulatory Peritoneal Dialysis (CAPD)
  • On Continuous Cycling Peritoneal Dialysis (CCPD)
  • Transplant recipients
  • Diagnosed with diabetes

Delays in getting the proper treatment needed for chronic kidney disease may lead to the following complications:

  • Fatal levels of potassium or hyperkalemia. This condition can lead to dangerous, and possibly deadly, changes in the heart rhythm.
  • Increased risk of peritonitis or inflammation of the membranes of the abdominal wall and organs. Peritonitis is a life-threatening emergency that needs prompt medical treatment.
  • Anemia or decreased supply in red blood cells. Anemia can make a patient tired, weak, and short of breath.
  • Heart disease, heart attack, congestive heart failure, and stroke
  • High blood pressure which can cause further damage to the kidneys and negatively impact blood vessels, heart, and other organs in the body.
  • Fluid buildup in the body that can cause problems with the heart and lungs.

According to Medscape, the most common cause of sudden death in patients with ESRD is hyperkalemia, which often follows missed dialysis or dietary indiscretion. The most common cause of death overall in the dialysis population is cardiovascular disease; cardiovascular mortality is 10-20 times higher in dialysis patients than in the general population.

Kidney Patients Who Wear a Medical ID Have 62% Lower Risk of Renal Failure

In a study of 350 patients, primarily in CKD stages 2 through 5, those who wore a medical ID bracelet or necklace had a 62% lower risk of developing kidney failure, based on eGFR. Wearing a medical-alert bracelet or necklace was associated with a lower risk of developing kidney failure compared with usual care.

Wearing a medical ID can serve as a reminder to look after your health and make the right choices such as taking medication on time and sticking to proper diet.

6 Things to Engrave on Kidney Disease Medical ID

A custom engraved medical alert jewelry can hold precise information that is specific to the wearer’s health condition. Here are some of the most important items to put on a chronic kidney disease or kidney failure medical ID:

  • Name
  • Medical information – including if you have other medical conditions such as diabetes or high blood pressure
  • Stage of CKD or kidney function
  • Transplant information
  • Current list of medicines
  • Contact person

Some patients have a long list of medications that may not fit on the engraved part of an ID. An emergency wallet card is recommended to use for listing down your medicines and other information or medical history.

 

Click here to enlarge chronic kidney disease infographic

Do you wear or carry a form of medical identification with you? Please share your experience or tips with us by posting a comment.

Ready for a new topic? All right then. Ever have a problem drinking your coffee? I know I have… until I followed these tips from the Cleveland Clinic at https://health.clevelandclinic.org/coffee-giving-you-tummy-trouble-try-these-low-acid-options/:

Here’s hoping that next cup of coffee treats you well.

Until next week,

Keep living your life!

 

Stay in the Blood, PLEASE

Let’s finish out this lazy, hazy summer month of August with another reader question. This one was quite straight forward:

“Any advice to slow down protein leaking into urine. Hard to build muscle when you keep excreting protein”

The condition of leaking protein into your urine is called proteinuria. That’s almost self-explanatory. The root of the word actually says protein while the suffix (group of related letters added to the end of a word which changes its meaning) is defined as,

“-uria.

  1. suffix meaning the “presence of a substance in the urine”: ammoniuria, calciuria, enzymuria.
  2. combining form meaning “(condition of) possessing urine”: paruria, polyuria, pyuria.

Thank you to the Medical Dictionary at https://medical-dictionary.thefreedictionary.com/-uria for the definition of uria.

Okay, so we know that protein is leaking into the urine. Not good. Why? We need it in our blood, not excreted in our urine. The following is from a previous blog on proteinuria. I used the dropdown menu in “Topics” on the right side of the blog page to find it or any other topic listed there. You can, too.

“According to WebMD at https://www.webmd.com/men/features/benefits-protein#1:

‘Protein is an important component of every cell in the body. Hair and nails are mostly made of protein. Your body uses protein to build and repair tissues. You also use protein to make enzymes, hormones, and other body chemicals. Protein is an important building block of bones, muscles, cartilage, skin, and blood.’”

Got it. Our reader is correct; it is hard to build muscle if you’re “excreting protein.” Now what? I usually stick to medical sites but this comment from Healthfully at https://healthfully.com/170108-how-to-reduce-excess-protein-in-the-kidney.html caught my eye.

“Continue monitoring how much protein your kidneys are spilling for several months. Since colds and infections can cause transient increases in protein, you will want at least several months of data.”

As Chronic Kidney Disease patients, we usually have quarterly urine tests… or, at least, I do. My urine protein level is included. I did not know that colds and infections are a factor here. Here’s an old urine analysis of mine. You can see Protein, Urine fourth from the bottom.

Component Your Value Standard Range
Color, Urine Yellow Colorless, Light Yellow, Yellow, Dark Yellow, Straw
Clarity, Urine Clear Clear
Glucose, Urine Negative mg/dL Negative mg/dL
Bilirubin, Urine Negative Negative
Ketones, Urine Negative mg/dL Negative mg/dL
Specific Gravity, Urine 1.013 1.007 – 1.026
Blood, Urine Negative Negative
pH, Urine 7.0 5.0 – 8.0
Protein, Urine Negative mg/dL Negative mg/dL
Urobilinogen, Urine <2.0 mg/dL <2.0 mg/dL
Nitrite, Urine Negative Negative
Leukocyte Esterase, Urine Negative Negative

 

Let’s say our reader did not have a cold or infection. What else could she do to slow down this loss of protein via her urine?

The American Kidney Fund at http://www.kidneyfund.org/kidney-disease/kidney-problems/protein-in-urine.html suggests the following:

“If you have diabetes or high blood pressure, the first and second most common causes of kidney disease, it is important to make sure these conditions are under control.

If you have diabetes, controlling it will mean checking your blood sugar often, taking medicines as your doctor tells you to, and following a healthy eating and exercise plan. If you have high blood pressure, your doctor may tell you to take a medicine to help lower your blood pressure and protect your kidneys from further damage. The types of medicine that can help with blood pressure and proteinuria are called angiotensin-converting enzyme inhibitors (ACE inhibitors) and angiotensin receptor blockers (ARBs).

If you have protein in your urine, but you do not have diabetes or high blood pressure, an ACE inhibitor or an ARB may still help to protect your kidneys from further damage. If you have protein in your urine, talk to your doctor about choosing the best treatment option for you.”

So far, we’ve discovered that frequent urine testing, determining if you have a cold or infection, keeping your diabetes and blood pressure under control, and/or ACE inhibitors may be helpful. But here’s my eternal question: What else can slow down the spilling of protein into our urine?

The Kidney & Urology Foundation of America, Inc. at http://www.kidneyurology.org/Library/Kidney_Health/Proteinuria.php has some more ideas about that:

“In addition to blood glucose and blood pressure control, restricting dietary salt and protein intake is recommended. Your doctor may refer you to a dietitian to help you develop and follow a healthy eating plan.”

As CKD patients, we know we need to cut down on salt intake. I actually eliminate added salt and have banned the salt shakers from the kitchen. No wonder no one but me likes my cooking. You do lose your taste for salt eventually. After all these years, I taste salt in restaurant food that makes that particular food unpalatable to me.

Hmmm, it seems to me that a list of high protein foods might be helpful here.

POULTRY…

  • Skinless chicken breast – 4oz – 183 Calories – 30g Protein – 0 Carbs – 7g Fat
  • Skinless chicken (Dark) – 4 oz – 230 Calories – 32g Protein – 0 Carbs – 5g Fat
  • Skinless Turkey (White) – 4 oz – 176 Calories – 34g Protein – 0 Carbs – 3.5g Fat
  • Skinless Turkey (Dark) – 4 oz – 211 Calories – 31g Protein – 0 Carbs – 8.1 g Fat

FISH…

  • Salmon – 3 oz – 119 Calories – 17g Protein – 0 Carbs – 5.5g Fat
  • Halibut – 3 oz – 91 Calories – 18g Protein – 0 Carbs – 3g Fat
  • Tuna – 1/4 cup – 70 Calories – 18g Protein – 0 Carbs – 0g Fat
  • Mackerel – 3 oz – 178 Calories – 16.1g Protein – 0 Carbs – 12g Fat
  • Anchovies (packed in water) – 1 oz – 42 Calories – 6g Protein – 1.3g Fat
  • Flounder – 1 127g fillet – 149 Calories – 30.7g Protein – 0 Carbs – 0.5g Fat (High Cholesterol)
  • Swordfish – 1 piece 106g – 164 Calories – 26.9g Protein – 0 Carbs – 1.5g Fat (High Cholesterol)
  • Cod – 1 fillet 180g – 189 Calories – 41.4g protein – 0 Carbs – 0.3g Fat (High Cholesterol)
  • Herring – 1 fillet 143g – 290 Calories – 32.9g Protein – 0 Carbs – 3.7g Fat (High Cholesterol)
  • Haddock – 1 fillet 150g – 168 Calories – 36.4g Protein – 0 Carbs – 0.3g Fat (High Cholesterol)
  • Grouper – fillet 202g – 238 Calories – 50.2g Protein – 0 Carbs – 0.6g Fat (High Cholesterol)
  • Snapper – 1 fillet 170g – 218 Calories – 44.7g Protein – 0 Carbs – 0.6g Fat (High Cholesterol)

BEEF…

  • Eye of round steak – 3 oz – 276 Calories – 49g Protein – 2.4g Fat
  • Sirloin tip side steak – 3 oz -206 Calories – 39g Protein – 2g Fat
  • Top sirloin – 3 oz – 319 Calories – 50.9g Protein – 4g Fat
  • Bottom round steak – 3 oz – 300 Calories – 47g Protein – 3.5g Fat
  • Top round steak – 3 oz – 240 Calories – 37g Protein – 3.1g Fat

PORK…

  • Pork loin – 3 oz – 180 Calories – 25g Protein – 0 Carbs – 2.9g Fat (High in cholesterol)
  • Tenderloin– 3 oz – 103 Calories – 18g Protein – 0.3g Carbs – 1.2g Fat (High in cholesterol)

GAME MEATS…

  • Bison – 3 0z – 152 Calories – 21.6g Protein – 0 Carbs – 3g Fat
  • Rabbit – 3 oz – 167 Calories – 24.7g Protein – 0 Carbs – 2.0g Fat
  • Venison (Deer loin broiled) – 3 oz – 128 Calories – 25.7g Protein – 0 Carbs – 0.7g Fat

GRAINS…

  • Cooked Quinoa – 1/2 cup – 115 Calories – 4.1g Protein – 22 Carbs – 2g Fat
  • Cooked Brown Rice – 1/2 cup – 106 Calories – 2.7g Protein – 23 Carbs – 0.7g Fat
  • Regular Popcorn (Air Popped no oil) – 1 cup – 60 Calories – 2g Protein – 11 Carbs – 0.6g Fat
  • Steel cut Oatmeal – 1 cup – 145 Calories – 7g Protein – 25g Carbs – 2.5g Fat
  • Multi grain bread – 1 slice – 68.9 Calories – 3.5g Protein – 11.3g Carbs – 0.2g Fat

BEANS (All nutrition values calculated for cooked beans)…

  • Tofu – 1/2 cup – 98 Calories – 11g Protein – 2g Carbs – 6g Fat
  • Lentils – 1/2 cup – 119 Calories – 9g Protein – 20g Carbs – 0.3g Fat
  • Black beans – 1/2 cup – 115 Calories – 7.8g Protein – 20 Carbs – 0.4g Fat
  • Kidney beans – 1/2 cup – 111 Calories – 7.2g Protein – 20.2 Carbs – 0.4g Fat
  • Lima beans – 1/2 cup – 110 Calories – 7.4g Protein – 19.7 Carbs – 0.3g Fat
  • Soy beans – 1/2 cup – 133 Calories – 11g Protein – 10 Carbs – 5.9g Fat

DAIRY…

  • Skim milk – 1 cup – 90 Calories – 9g Protein – 12g Carbs – 4.8g Fat
  • Low fat Yogurt – 1 cup – 148 Calories – 12g Protein – 17Carbs – 3.2g Fat
  • Non fat Yogurt – 1 cup – 130 Calories – 13g Protein – 16.9 Carbs – 0.4 Fat
  • Cheddar cheese – 1 oz – 116 Calories – 7g Protein – 0.4 Carbs – 9.2g Fat
  • Low fat Cottage Cheese – 1/2 cup – 82 Calories – 14g Protein – 3.1g Carbs – 0.7g Fat
  • One large egg – 73 Calories – 6.6g Protein – 0 Carbs – 6g Fat
  • Low fat Milk – 1 cup – 119 Calories – 8g Protein – 12 Carbs – 4.6g Fat

NUTS & SEEDS…

  • Raw Almonds – 1 oz about 22 whole – 169 Calories – 22g Carbs – 6.2g Protein – 1.1g Fat
  • Raw Pistachios – 1 oz about 49 Kernels – 157 Calories – 7.9g Carbs – 5.8g Protein – 1.5g Fat
  • Pumpkin seeds – 1 oz – 28g about 100 hulled seeds – 151 Calories – 5g Carbs – 6.0g Protein – 2.4g Fat
  • Raw Macadamia nuts – 1 oz about 10- 12 kernels – 203 Calories – 4g Carbs – 2.2g Protein – 3.4g Fat
  • Chia seeds – 1 oz – 137 Calories – 12.3g Carbs – 4.4g Protein – 0.9g Fat
  • Walnuts – 1 cup in shell about 7 total – 183 Calories – 3.8g Carbs – 4.3g Protein – 1.7g Fat
  • Raw Cashews1oz – 28g – 155 Calories – 9.2g Carbs – 5.1g Protein – 2.2g Fat

MORE HIGH PROTEIN FOODS…

  • Natural peanut butter – 1 oz – 146 Calories – 7.3g Protein – 10g Carbs – 1.6g Fat
  • Natural almond butter – 1 tbsp – 101 Calories – 2.4g Protein – 3.4 Carbs – 0.9g Fat
  • Natural cashew butter – 1 tbsp – 93.9 Calories – 2.8g Protein – 4.4 Carbs – 1.6g Fat
  • Hummus – 1 oz – 46.5 Calories – 2.2g Protein – 4.0g Carbs – 0.4g Fat
  • Tempeh Cooked – 1 oz – 54 Calories – 5.1g Protein – 2.6g Carbs – 1.0g Fat

There’s a vegan list on the same site. Be leery of protein sources that are not on your kidney diet.

Until next week,

Keep living your life!

 

Don’t Know Much about FSGS…

Being on chemotherapy is very tiring, so I stay home a lot and delve into anything that catches my eye, like FSGS. I’ve seen the letters before and had sort of a vague idea of what it might be, but what better time to explore it and whatever it may have to do with Chronic Kidney Disease than now?

Let’s start at the beginning. FSGS is the acronym for focal segmental glomerulosclerosis. Anything look familiar? Maybe the ‘glomerul’ part of glomerulosclerosis? I think we need to know the definition of glomerulosclerosis to be able to answer that question. The National Institutes of Health’s U.S. National Library of Congress’s Medline Plus at https://medlineplus.gov/ency/article/000478.htm defines it this way:

“Focal segmental glomerulosclerosis is scar tissue in the filtering unit of the kidney. This structure is called the glomerulus. The glomeruli serve as filters that help the body get rid of harmful substances. Each kidney has thousands of glomeruli.

‘Focal’ means that some of the glomeruli become scarred. Others remain normal. ‘Segmental’ means that only part of an individual glomerulus is damaged.”

So, we do know what the ‘glomerul’ part of glomerulosclerosis means. It refers to the same filters in the kidneys we’ve been discussing for the past eleven years: the glomeruli. This former English teacher can assure you that ‘o’ is simply a connective between the two parts of the word. ‘Sclerosis’ is a term you may have heard of in relation to the disease of the same name, the one in which the following occurs (according to Encarta Dictionary):

“the hardening and thickening of body tissue as a result of unwarranted growth, degeneration of nerve fibers, or deposition of minerals, especially calcium.”

Wait a minute. When I first started writing about CKD, I approached NephCure Foundation… not being certain what it was, but seeing Neph in its name. They were kind enough to ask me to guest blog for them on 8/21/11. By the way, as of August 15, 2014, NephCure Foundation became NephCure Kidney International. That makes the connection to our kidneys much more clear.

Back to FSGS. The NephCure Kidney International website at https://nephcure.org/ offers us this information:

“How is FSGS Diagnosed?

FSGS is diagnosed with renal biopsy (when doctors examine a tiny portion of the kidney tissue), however, because only some sections of the glomeruli are affected, the biopsy can sometimes be inconclusive.

What are the Symptoms of FSGS?

Many people with FSGS have no symptoms at all.  When symptoms are present the most common include:

Proteinuria – Large amounts of protein ‘spilling’ into the urine

Edema – Swelling in parts of the body, most noticeable around the eyes, hands and feet, and abdomen which causes sudden weight gain.

Low Blood Albumin Levels because the kidneys are removing albumin instead of returning it to the blood

High Cholesterol in some cases

High Blood Pressure in some cases and can often be hard to treat

FSGS can also cause abnormal results of creatinine in laboratory tests. Creatinine is measured by taking a blood sample. Everyone has a certain amount of a substance called creatinine floating in his or her blood. This substance is always being produced by healthy muscles and normally the kidneys constantly filter it out and the level of creatinine stays low. But when the filters become damaged, they stop filtering properly and the level of creatinine left in the blood goes up.”

Whoa! Look at all the terms we’ve used again and again in the last eleven years of SlowItDownCKD’s weekly blog: proteinuria, edema, albumin, cholesterol, high blood pressure, and creatinine. This is definitely something that we, as CKD patients, should know about.

Okay. Let’s say you are diagnosed with FSGS. Now what? The National Kidney Organization at https://www.kidney.org/atoz/content/focal was helpful here:

How is FSGS treated?

The type of treatment you get depends on the cause. Everyone is different and your doctor will make a treatment plan that is right for your type of FSGS. Usually, treatments for FSGS include:

  • Corticosteroids (often called “steroids”)
  • Immunosuppressive drugs
  • ACE inhibitors and ARBs
  • Diuretics
  • Diet change

Corticosteroids and immunosuppressive drugs: These medications are used to calm your immune system (your body’s defense system) and stop it from attacking your glomeruli.

ACE inhibitors and ARBs: These are blood pressure medications used to reduce protein loss and control blood pressure.”

Diuretics: These medications help your body get rid of excess fluid and swelling. These can be used to lower your blood pressure too.

Diet changes:  Some diet changes may be needed, such as reducing salt (sodium) and protein in your food choices to lighten the load of wastes on the kidneys.”

I think we need another definition here. Yep, it’s Plasmapheresis. Back to the Encarta Dictionary.

“a process in which blood taken from a patient is treated to extract the cells and corpuscles, which are then added to another fluid and returned to the patient’s body.”

Let’s go back to The NephCure Kidney International website at https://nephcure.org/ for a succinct summary of FSGS Facts.

“More than 5400 patients are diagnosed with FSGS every year, however, this is considered an underestimate because:

  • a limited number of biopsies are performed
  • the number of FSGS cases are rising more than any other cause of Nephrotic Syndrome…

NephCure estimates that there are currently 19,306 people living with ESRD due to FSGS…, in part because it is the most common cause of steroid resistant Nephrotic Syndrome in children,… and it is the second leading cause of kidney failure in children…

NephCure estimates that people of African ancestry are at a five times higher diagnosis rate of FSGS…

About half of FSGS patients who do not respond to steroids go into ESRD each year, requiring dialysis or transplantation…

Approximately 1,000 FSGS patients a year receive kidney transplants… however, within hours to weeks after a kidney transplant, FSGS returns in approximately 30-40% of patients….”

As prevalent and serious as this sounds, please remember that FSGS is a rare kidney disease. Knowing what we now know just may help you keep your eyes open for it.

Until next week,

Keep living your life!

That’s Not a Kind of Kidney Disease.  Or Is It?

It’s like I’m attuned to anything kidney. After eleven years of writing about Chronic Kidney Disease, I’ll bet I am. Sometimes, it’s the smallest connection that triggers something in my mind. For example, Sjögren’s syndrome kept nagging at me, although I’d never heard of it as a sort of kidney disease. So, what was it and what did it have to do with the kidneys? I went right to the Sjögren’s Syndrome Foundation at https://info.sjogrens.org/conquering-sjogrens/sjogrens-kidney-disease for information.

Sjögren’s & Kidney Disease

by Philip L. Cohen, MD, Professor of Medicine, Temple University School of Medicine 

About 5% of people with Sjögren’s develop kidney problems. In most of these patients, the cause is inflammation around the kidney tubules, where urine is collected, concentrated, and becomes acidic. The infiltrating blood cells (mostly lymphocytes) injure the tubular cells, so that the urine does not become as acidic as it should. This condition, called distal renal tubular acidosis, is frequently asymptomatic, but can cause excessive potassium to be excreted in the urine, and may lead to kidney stones or (very rarely) low enough blood potassium to cause muscle weakness or heart problems. Very occasionally, injury to the renal tubules can cause impairment in the ability to concentrate urine, leading to excessive urine volume and increased drinking of fluids (nephrogenic diabetes insipidus).

A smaller number of patients with Sjögren’s may develop inflammation of the glomeruli, which are the tiny capillaries through which blood is filtered to produce urine. This may cause protein to leak into the urine, along with red blood cells. Sometimes a kidney biopsy is needed to establish the exact diagnosis and treatment. Treatment options may include corticosteroids and immunosuppressive drugs to prevent loss of kidney function.

This information was first printed in The Moisture Seekers, SSF’s patient newsletter for members.”

This reminds me of when I was teaching critical thinking on the college level. First, we’d hit the class with an article about something foreign to them and then, we’d show them how to figure out what it meant. For our purposes, a few explanations and perhaps a diagram or two might be a good place to start.

Tubules, huh? What are those? Actually, the word just means tube shaped. Remembering that renal and kidney mean the same thing, we can see the problem area.

Here’s another picture. This one to show you glomeruli.

Now remember, CKD patients are usually limited as to how much fluid they can drink per day. Too much forces the kidneys to work too hard to clear the urine from your body. Remember the car analogy from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease?

As for potassium, that’s one of the electrolytes CKD patients need to be aware of. This article by Dr. Parker on Healthy Way at http://www.bmj-health.com/what-does-potassium-do/ explains:

“Potassium does many important functions in the body. This essential mineral is mainly found inside the cells of our body. Low potassium levels are associated with many health conditions including hypertension, irregular heartbeat, and muscle weakness. We should take adequate amounts of potassium-rich foods for a healthy life.

Potassium is essential for the heart

We need potassium to maintain the blood pressure within normal range. There should be a balance between sodium and potassium in the body to regulate our blood pressure. Too much sodium and too little potassium can elevate your blood pressure.

In addition, potassium is needed for the contraction of the heart. Potassium levels in the blood should be kept nearly constant or within a narrow range for the proper pumping action of the heart. The heart may stop beating if we have high or low levels of potassium in the blood.

We need potassium for stronger muscles

Most of the potassium in the body is found inside the muscle cells. It is the main positively charged ion inside the cells. It is essential for the contraction of muscles. Low levels of potassium are associated with muscle twitching, cramps and muscle weakness. Very low levels can cause paralysis of the muscles.

Hypokalemic periodic paralysis is a disorder that causes occasional episodes of muscle weakness and paralysis caused by lower levels of potassium in the blood. It is a genetic condition that runs in families.

It is essential for nerve conduction

Sodium and potassium are needed to maintain the electrical potential across the nerve cells. This electrical charge is essential for the conduction of nerve signals along the nerves.

It protects from stroke

Researchers found eating potassium-rich foods is associated with reduced incidents of stroke. A recent study conducted in postmenopausal women supports the findings. One of the co-researchers says, ‘post-menopausal women should eat more potassium-rich foods, such as fruits, vegetables, beans, milk and unprocessed meats in order to lower their risk of stroke and death’.

It is important for water and electrolyte balance in the body

Water and electrolyte balance is maintained by the kidneys. This is one of the important functions of the kidneys. Aldosterone, a hormone secreted by the adrenal glands plays the primary role in the balance of sodium and potassium.

The normal blood level of potassium is 3.5 to 5 mmol/l. A level of less than 3.5 is called hypokalemia, and more than 5 is called hyperkalemia. To achieve the normal blood level, we need to take about 4 to 5 grams of potassium per day. An average size banana will provide about 25% of daily requirement.

It is recommended to eat foods that have plenty of potassium. In addition, your diet should contain low amounts of sodium (salt). Taking supplements is not a good idea. It can cause many side effects.

People who have certain medical conditions such as chronic kidney failure should not eat large amounts of potassium-rich foods.

People who take certain types of medications should consult a doctor about their potassium intake. Some may need additional intake while others may need to restrict the intake of potassium rich foods.”

So, while Sjögren’s syndrome may not be a kind of kidney disease, it can affect your kidneys. Thanks for keeping me company while I made the connection for myself.

Until next week,

Keep living your life!

Chemo and My Kidneys

 As most of you know, I am extremely protective of my kidneys. When I was first diagnosed with Chronic Kidney Disease 11 years ago, my eGFR was only 39. Here’s a quick reminder of what the eGFR is from my first CKD book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“GFR: Glomerular filtration rate [if there is a lower case ‘e’ before the term, it means estimated glomerular filtration rate] which determines both the stage of kidney disease and how well the kidneys are functioning.”

39. That’s stage 3B, the lower part of stage 3B. During the intervening 11 years, I’ve been able to raise it to 50 (and sometimes higher for short periods) via vigorously following the renal diet, exercising, avoiding stress as much as possible, maintaining adequate sleep, and paying strict attention to the medications prescribed for me. While the medications were the ones I had been taking for high blood pressure prior to being diagnosed with CKD, they worked in my favor.

This excerpt from The National Center for Biotechnology Information (NCBI) part of the United States National Library of Medicine (NLM), a branch of the National Institutes of Health (NIH) at https://www.ncbi.nlm.nih.gov/books/NBK492989/ will explain why:

“The decision of whether to reduce blood pressure levels in someone who has chronic kidney disease will depend on

  • how high their blood pressure is (when untreated),
  • whether they have diabetes, and
  • how much protein is in their urine (albumin level).

A person with normal blood pressure who doesn’t have diabetes and hardly has any albumin in their urine will be able to get by without using any blood-pressure-lowering medication. But people who have high blood pressure, diabetes or high levels of albumin in their urine are advised to have treatment with ACE inhibitors (angiotensin-converting enzyme inhibitors) or sartans (angiotensin receptor blockers). In people who have diabetes, blood-sugar-lowering medication is also important.”

When I was first diagnosed with pancreatic cancer early last month, it changed my medical priorities. With my nephrologist’s blessing, my primary focus was the cancer… not my kidneys. It took constant reminders to myself not to be so quick to say no to anything that I thought would harm my kidneys. In other words, to those things I’d been saying no to for the last 11 years.

For example, once diagnosed with CKD, I ate very little protein keeping to my five ounce daily limitation. Not anymore. Protein is needed to avoid muscle wasting during chemotherapy with a minimum requirement of eight ounces a day. I even tried roast beef and other red meats. After 11 years, they no longer agreed with me so I eat ground turkey, chicken, cheese, and am considering soy.

Another change: I preferred not to eat carbohydrates, but was warned not to lose weight if I could help it. All of a sudden I’m eating Goldfish, bread, and pasta. I can’t say that I’m enjoying them, but I am keeping my weight loss to a minimum. Other limitations like those on potassium and phosphorous have also gone by the wayside. I’ve eaten every childhood favorite, foods that I’ve avoided for the last 11 years, and anything that might look tempting in the last month, but none of them really taste that good. I like the foods on the renal diet now.

Oh, the only thing I have not increased is salt. My daughter takes me to my chemotherapy sessions. There’s a Jewish style restaurant across the street and we showed up early one day. I wanted to try a toasted bagel with butter, the way I ate it before CKD. The damned thing was salty! I hadn’t expected that.

Back to chemo and my kidneys. I admit it. I was nervous. What was this combination of poisons going to do to my kidneys? If it was so caustic that I had to have a port in place so that it wouldn’t be injected directly into my veins for fear of obliterating them, what about my kidneys?

I anxiously awaited my first Comprehensive Blood Panel, the blood test that includes your GFR. Oh, oh, oh! My kidney function had risen to 55 and my creatinine had lowered to 1.0. Let me explain just how good this was.

A GFR of 55 is the higher part of stage 3A. 60 is where stage 2 of CKD begins. My kidneys were functioning better on chemo. And the creatinine? Let’s get a quick definition of that first. According to The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/kidney-disease/chronic-kidney-disease-ckd/tests-diagnosis:

“Creatinine. Creatinine is a waste product from the normal breakdown of muscles in your body. Your kidneys remove creatinine from your blood. Providers use the amount of creatinine in your blood to estimate your GFR. As kidney disease gets worse, the level of creatinine goes up.”

Yet, mine went down. How? I asked and it was explained that all the hydration used to clear my veins of the caustic chemotherapy had worked this magic. I had two hours of hydration before the chemo-therapy  itself, two hours afterward, and another two hours the next day. My kidneys had never been this hydrated!

But wait, there’s more. I have diabetes. The pancreas is the organ that produces insulin. Could my diabetes be from the tumor blocking the production of insulin by my pancreas? I truly don’t know, but my glucose level is within the standard range for the first time since I’ve been diagnosed with diabetes.

Would I recommend chemotherapy to raise your GFR, and lower your creatinine and your glucose level? Of course not. But I am feeling so very lucky that my kidneys are not coming to any harm during the chemotherapy necessary to save my life. I can’t begin to tell you how relieved I am.

Until next week,

Keep living your life!

I’m Finally Ready to Let National Kidney Month Go

As you already know, I’ve been posting the chapter I contributed to the book 1in9 as my contribution to National Kidney Month. This will probably be the final post of that chapter, unless I decide to post the biography that goes along with the chapter at a later date.

Most of you are aware that I now have pancreatic cancer and the chemo effects are getting in my way. I’m hoping that I’ll not be feeling them so severely in the near future and will be able to research some new material for you. Right now, that’s just not possible. You may have noticed that my Twitter, Instagram, and Facebook pages no longer contain original posts. That’s due to the same reason.

But let’s complete the book chapter:

When I was diagnosed back in 2008, there weren’t that many reader friendly books on anything having to do with CKD. Since then, more and more books of this type have been published. I’m laughing along with you, but I don’t mean just SlowItDownCKD 2011, SlowItDownCKD 2012 (These two were The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, until I realized how unwieldy both the book and the title were – another learning experience), SlowItDownCKD 2013, SlowItDownCKD 2014 (These two were formerly The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2), SlowItDownCKD 2015, SlowItDownCKD 2016, and SlowItDownCKD 2017. By the way, I’m already working on SlowItDownCKD 2018. Each book contains the blogs for that year.

I include guest blogs or book review blogs to get a taste of the currently available CKD news. For example, 1in9 guest blogged this year. Books such as Dr. Mandip S. Kang’s, The Doctor’s Kidney Diets (which also contains so much non-dietary information that we – as CKD patients – need to know), and Drs. Raymond R. Townsend and Debbie L. Cohen’s 100 Questions & Answers about Kidney Disease and Hypertension.

I miss my New York daughter and she misses me, so we sometimes have coffee together separately. She has a cup of coffee and I do at the same time. It’s not like being together in person, but it’s something. You can find support the same way via Facebook Chronic Kidney Disease Support Groups. Some of these groups are:

Chronic Kidney Disease Awareness

Chronic Kidney Disease in India

CKD (Kidney Failure) Support Group International

Dialysis & Kidney Disease

Friends Sharing Positive Chronic Kidney Disease

I Hate Dialysis

Kidney Disease Diet Ideas and Help

Kidney Disease Ideas and Diets1

Kidney Disease is not a Joke

Kidney Disease, Dialysis, and Transplant

Kidney Warriors Foundation

Kidneys and Vets

Mani Trust

Mark’s Private Kidney Disease Group

P2P

People on Dialysis

Sharing your Kidney Journey

Stage 3 ‘n 4 Kidneybeaners Gathering Place

The Transplant Community Outreach

UK Kidney Support

Women’s Renal Failure

Wrap Up Warm for Kidney Disease

What I hit over and over again in the blogs is that diabetes is the foremost cause of CKD with hypertension as the second most common cause. Simple blood and urine tests can uncover your CKD – if you’re part of the unlucky 96% of those in the early stages of the disease who don’t know they have it.

Each time I research, I’m newly amazed at how much there is to learn about CKD…and how many tools you have at your disposal to help slow it down. Diet is the obvious one. But if you smoke or drink, stop, or at least cut down. If you don’t exercise, start. Adequate, good quality sleep is another tool. Don’t underestimate rest either; you’re not being lazy when you rest, you’re preserving whatever kidney function you have left. I am not particularly a pill person, but if there’s a medication prescribed that will slow down the gradual decline of my kidney function, I’m all for it.

I was surprised to discover that writing my SlowItDownCKD book series, maintaining a blog, Facebook page, Twitter, Instagram, and Pinterest accounts of the same name are not enough for me for me to spread the word about CKD screening and education. I’m determined to change this since I feel so strongly that NO ONE should have this disease and not be aware of it.

That’s why I’ve brought CKD awareness to every community that would have me: coffee shops, Kiwanis Clubs, independent bookstores, senior citizen centers, guest blogging for the likes of The American Kidney Fund and The National Kidney Foundation, being interviewed by publications like the Wall Street Journal’s Health Matters, The Center for Science in The Public Interest, and The United Federation of Teachers’ New York Teacher, and on podcasts such as The Renal Diet Headquarters, Online with Andrea, The Edge Podcast, Working with Chronic Illness, and Improve Your Kidney Health.

I’ve been very serious about sharing about CKD before it advances to end stage… meaning dialysis. To that end, I gathered a team for the National Kidney Foundation of Arizona Kidney Walk one year. Another year, I organized several meetings at the Salt River Pima-Maricopa Indian Community. Education is vital since so many people are unaware they even have the disease.

You can slow down the progression of the decline of kidney function. I have been spending a lot of time on my health and I’m happy to say it’s been paying off. There are five stages. I’ve stayed at the middle one for over a decade despite having both high blood pressure and diabetes. That’s what this is about. People don’t know about CKD. They get diagnosed. They think they’re going to die. Everybody dies, but it doesn’t have to be of CKD. I am downright passionate about people knowing this.

Thanks for taking the time to finish the chapter. The more people who know about Chronic Kidney Disease, the more people can tell others about it. I’d hate for anyone to be part of the 90% of those with CKD who don’t know they have it.

Until next week,

Keep living your life!

To Continue…

National Kidney Month is just flying by. This is actually the last week and I doubt I’ll be able to post the rest of the 1in9 chapter before next month. But then again, it’s always Kidney Month for those of us with Chronic Kidney Disease. By the way, thank you to the reader who made it a point of telling me she can’t wait to read the rest of the chapter. Sooooo, let’s get started!

***

Nephrologist switch. The new one was much better for me. He explained again and again until I understood and he put up with a lot of verbal abuse when this panicky new patient wasn’t getting answers as quickly as she wanted them. Luckily for me, he graciously accepted my apology.

After talking to the nephrologist, I began to realize just how serious this disease was and started to wonder why my previous nurse practitioner had not caught this. When I asked her why, she responded, “It was inconclusive testing.” Sure it was. Because she never ordered the GFR tested; that had been incidental! I feel there’s no sense crying over spilled milk (or destroyed nephrons, in this case), but I wonder how much more of my kidney function I could have preserved if I’d known about my CKD earlier.

According to the Mayo Clinic, there are 13 early signs of chronic kidney disease. I never experienced any of them, not even one. While I did have high blood pressure, it wasn’t uncontrollable which is one of the early signs. Many, like me, never experienced any noticeable symptoms. Unfortunately, many, like me, may have had high blood pressure (hypertension) for years before CKD was diagnosed. Yet, high blood pressure and diabetes are the two leading causes of CKD. I find it confusing that uncontrollable high blood pressure may be an early sign of CKD, but hypertension itself is the second leading cause of CKD.

Here’s the part about my researching. I was so mystified about what was happening and why it was happening that I began an extensive course of research. My nephrologists did explain what everything meant (I think), but I was still too shocked to understand what they were saying. I researched diagnoses, descriptions of tests, test results, doctors’ reports, you name it. Slowly, it began to make sense, but that understanding only led to more questions and more research.

You’ve probably already guessed that my world changed during that first appointment. I began to excuse myself for rest periods each day when I went back East for a slew of family affairs right after. I counted food groups and calories at these celebrations that summer. And I used all the errand running associated with them as an excuse to speed walk wherever I went and back so I could fit in my exercise. Ah, but that was just the beginning.

My high blood pressure had been controlled for 20 years at that time, but what about my diet? I had no clue there was such a thing as a kidney diet until the nutritionist explained it to me. I’m a miller’s granddaughter and ate anything – and I do mean anything – with grain in it: breads, muffins, cakes, croissants, all of it. I also liked lots of chicken and fish… not the five ounces per day I’m limited to now.

The nutritionist explained to me how hard protein is on the kidneys… as is phosphorous… and potassium… and, of course, sodium. Out went my daily banana—too high in potassium. Out went restaurant burgers—larger than my daily allowance of protein. Chinese food? Pizza? Too high in sodium. I embraced an entirely new way of eating because it was one of the keys to keeping my kidneys functioning in stage 3.

I was in a new food world. I’d already known about restricting sodium because I had high blood pressure, but these other things? I had to keep a list of which foods contain them, how much was in each of these foods, and a running list of how much of each I had during the day so I knew when I reached my limit for that day.

Another critical piece of slowing down CKD is medication. I was already taking meds to lower my blood pressure when I was first diagnosed with CKD. Two more prescriptions have been added to this in the last decade: a diuretic that lowers my body’s absorption of salt to help prevent fluid from building up in my body (edema), and a drug that widens the blood vessels by relaxing them. I take another drug for my brand new diabetes. (Bye-bye, sugars and most carbs.) The funny thing is now my favorite food is salad with extra virgin olive oil and balsamic vinegar. I never thought that would happen: I was a chocoholic!

Exercise, something I loved until my arthritis got in the way, was also important. I was a dancer. Wasn’t that enough? Uh-uh, I had to learn about cardio and strength training exercise, too. It was no longer acceptable to be pleasantly plumb. My kidneys didn’t need the extra work. Hello to weights, walking, and a stationary bike. I think I took sleep for granted before CKD, too, and I now make it a point to get a good night’s sleep. A sleep apnea device improved my sleep—and my kidney function rose.

I realized I needed to rest, too. Instead of giving a lecture, running to an audition, and coming home to meet a deadline, I slowly started easing off until I didn’t feel like I was running on empty all the time. The result was that I ended up graciously retiring from both acting and teaching at a local college, which gave me more time to work on my CKD awareness advocacy.

***

There’s so much more to tell you about my personal CKD journey… and you’ll read more of it next week. Although, I should remind you that the entire book is available in print and digital on both Amazon.com and B&N.com, just as the entire SlowItDownCKD series of books is.

Until next week,
Keep living your life!

World Kidney Day, 2019

Will you look at that? The world keeps moving on no matter what’s going on in our personal lives. And so, I recognize that Thursday of this week is World Kidney Day. In honor of this occasion, I’ve chosen to update last year’s World Kidney Day blog… so sit back and enjoy the read.

…World Kidney Day? What’s that? I discovered this is a fairly new designation. It was only thirteen years ago that it was initiated.

 

According to http://worldkidneyday.org,

World Kidney Day is a global awareness campaign aimed at raising awareness of the importance of our kidneys.”

Sound familiar?  That’s where I’m heading with What Is It and How Did I Get It? Early Stage Chronic Kidney Disease; SlowItDownCKD 2011; SlowItDownCKD 2012; SlowItDownCKD 2013; SlowItDownCKD 2014; SlowItDownCKD 2015; SlowItDownCKD 2016; SlowItDownCKD 2017; Facebook; Instagram; LinkedIn; Pinterest; Twitter; and this blog. We may be running along different tracks, but we’re headed in the same direction.

The 59 year old International Society of Nephrology (ISN) – a non-profit group spreading over 155 countries – is one part of the equation for their success.  Another is the International Federation of Kidney Foundations with membership in over 40 countries. Add a steering committee and The World Kidney Day Team and you have the makings of this particular concept….

According to their website at https://www.theisn.org/advocacy/world-kidney-day :

“The mission of World Kidney Day is to raise awareness of the importance of our kidneys to our overall health and to reduce the frequency and impact of kidney disease and its associated health problems worldwide.

Objectives:

  • Raise awareness about our ‘amazing kidneys’
  • Highlight that diabetes and high blood pressure are key risk factors for Chronic Kidney Disease (CKD)
  • Encourage systematic screening of all patients with diabetes and hypertension for CKD
  • Encourage preventive behaviors
  • Educate all medical professionals about their key role in detecting and reducing the risk of CKD, particularly in high risk populations
  • Stress the important role of local and national health authorities in controlling the CKD epidemic.”

While there are numerous objectives for this year’s World Kidney Day, the one that lays closest to my heart is this one: ‘Encourage systematic screening of all patients with diabetes and hypertension for CKD.’

Back to World Kidney Day’s website at https://www.worldkidneyday.org  now, if you please.

This year’s theme is Kidney Health for Everyone Everywhere.

Their site offers materials and ideas for events as well as a map of global events. Prepare to be awed at how wide spread World Kidney Day events are.

Before you leave their page, take a detour to Kidney FAQ (Frequently Asked Questions) on the toolbar at the top of the page.  You can learn everything you need to know from what the kidneys do to what the symptoms (or lack thereof) of CKD are, from how to treat CKD to a toolbox full of helpful education about your kidneys to preventative measures.

If only my nurse practitioner had been aware of National Kidney Month or World Kidney Day, she could have warned me immediately that I needed to make lifestyle changes so the decline of my kidney function could have been slowed down earlier. How much more of my kidney function would I still have if I’d known earlier? That was a dozen years ago. This shouldn’t still be happening… but it is.

I received a phone call a few years ago that just about broke my heart.  Someone very dear to me sobbed, “He’s dying.” When I calmed her down, she explained a parent was sent to a nephrologist who told him he has end stage renal disease and needed dialysis or transplantation immediately.

I pried a little trying to get her to admit he’d been diagnosed before end stage, but she simply didn’t know what I was talking about. There had been no diagnose of Chronic Kidney Disease up to this point. There was diabetes, apparently out of control diabetes, but no one impressed upon this man that diabetes is the foremost cause of CKD.

What a waste of the precious time he could have had to do more than stop smoking, which he did (to his credit), the moment he was told it would help with the diabetes.  Would he be where he was then if his medical practitioners had been aware of National Kidney Month or World Kidney Day, especially since this man was high risk due to his age and diabetes?  I fervently believe so.

I have a close friend who was involved in the local senior center where she lives.  She said she didn’t know anyone else but me who had this disease.  Since 1 out of every 7 people does nationally (That’s 15% of the adult population) and being over 60 places you in a high risk group, I wonder how many of her friends were included in the 96% of those in the early stage of CKD who don’t know they have CKD or don’t even know they need to be tested.  I’d have rather been mistaken here, but I’m afraid I wasn’t. National Kidney Month or World Kidney Day could have helped them become aware.

For those of you who have forgotten (Easily read explanations of what results of the different items on your tests mean are in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease.), all it takes is a blood test and a urine test to detect CKD.  I have routine blood tests every three months to monitor a medication I’m taking.  It was in this test, a test I took anyway, that my family physician uncovered Chronic Kidney Disease as a problem.

There is so much free education about CKD online. Maybe you can start with the blogroll on the right side of the blog or hit “Apps” on the Topics Dropdown. None of us needs to hear another sorrowful, “If only I had known!”

Until next week,

Keep living your life!

National Kidney Month, 2019

Anyone remember LOL? It’s older internet shorthand for Laughing Out Loud. That’s what I’m doing right now. Why? Because, after all these years of blogging, I’ve just realized that I compose my opening paragraph as I’m waking up. Still in bed, mind you. Still half asleep. Isn’t the brain wonderful?

This is my half asleep composition for this morning: March is National Kidney Month. That’s not to be confused with March 14th, which is World Kidney Day. So, today, we address the nation. Next week, the world.

As usual, let’s start at the beginning. What is National Kidney Month? Personalized Cause at https://www.personalizedcause.com/health-awareness-cause-calendar/national-kidney-month has a succinct explanation for us. By the way, while I’m not endorsing them since the site is new to me, I should let you know they sell the green ribbons for National Kidney Month that you’ll probably be seeing hither and yon all month.

“National Kidney Month, observed in March and sponsored by the National Kidney Foundation, is a time to increase awareness of kidney disease, promote the need for a cure, and spur advocacy on behalf of those suffeing (sic) with the emotional, financial and physical burden of kidney disease. The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease for hundreds of thousands of healthcare professionals, millions of patients and their families, and tens of millions of Americans at risk.” That, of course, prompted me to go directly to the National Kidney Foundation’s information about National Kidney Month at https://www.kidney.org/news/monthly/Focus_KidneyMonth.

Focus on the Kidneys During National Kidney Month in March

March is National Kidney Month and the NKF is urging all Americans to give their kidneys a second thought and a well-deserved checkup. Kidneys filter 200 liters of blood a day, help regulate blood pressure and direct red blood cell production. But they are also prone to disease; 1 in 3 Americans is at risk for kidney disease due to diabetes, high blood pressure or a family history of kidney failure. There are more than 30 million Americans who already have kidney disease, and most don’t know it because there are often no symptoms until the disease has progressed. During National Kidney Month in March, and in honor of World Kidney Day on March 14, the NKF offers the following health activities to promote awareness of kidneys, risk factors and kidney disease:

  • Free Screenings: On World Kidney Day and throughout the Month of March, NKF is offering free screenings to those most at risk for kidney disease – anyone with diabetes, high blood pressure or a family history of kidney failure. Locations and information can be found on the calendar on our website.
  • ‘Are You at Risk’ Kidney Quiz: Early detection can make a difference in preventing kidney disease so it’s important to know if you’re at risk. Take the online kidney quiz!
  • Live Twitter Chat with Dr. Joseph Vassalotti: The National Kidney Foundation’s Chief Medical Officer, Dr. Joseph Vassalotti, will be hosting an interactive kidney Q&A on World Kidney Day, Thursday, March 14, from 12-2 pm ET. Ask your questions at www.twitter.com/nkf using the hash-tag #WorldKidneyDayNKF.”

Wow, so much going on. This is also the month of kidney walks, like the one my daughter Nima participated in on the East Coast in my honor, or the one for which I organized a team several years ago. Actually, it’s the month specifically for anything and everything that will raise awareness of kidney disease. I’ve mentioned that I contributed a chapter to the book 1in9, which is about kidney disease. You’re right. The book launch is this month, March 6th to be specific.

The American Kidney Fund at http://www.kidneyfund.org/take-the-pledge/ is also taking part in National Kidney Month. They have a form to fill out to take a pledge to fight kidney disease.  I signed up; you can, too, if you’d like to. I’m not comfortable with the word “fight,” but I’m not going to let that stop me from spreading awareness of the disease. I wanted to share this quote from the AKF with you, both as a CKD awareness advocate and a woman:

“‘Kidney disease is a silent killer that disproportionately affects women who are often the primary caregivers for loved ones with the disease, are more likely to become living donors but less likely to receive a transplant, and are at higher risk for CKD,’ said LaVarne A. Burton, president and chief executive officer of AKF. ‘Because women with kidney disease may also face other health issues, including infertility, pregnancy complications, bone disease and depression, AKF is using Kidney Month to let women know we are here to support them and to provide resources that will answer their questions and concerns.’”

The Renal Support Network at https://www.rsnhope.org/ is working even more emphatically to spread kidney disease awareness this month, too:

“March is National Kidney Month. This is a special time set aside to raise awareness about kidney health and activities. RSN invites members of the kidney community, our friends and our families to join in the conversation.”

This on top of their usual. For those that are not familiar with this group, the following statement is from their website.

“Since 1993 RSN has created and continues to produce a vast collection of information about kidney disease. Feel free to share our National Kidney Month page, a favorite story, KidneyTalk™ show or awareness image on social media using the hashtag #KidneyMonth and be sure to tag us @RSNhope.”

DaVita Kidney Care at https://www.davita.com/education/resources offers many resources (as the website’s title assures us) to help understand both CKD and dialysis. Some of their offerings are:

If you click through on the link offered above, each item will open on a new page.

As for me, I’ll blog my brains out until more and more people are aware of kidney disease. Same goes for the Instagram, Facebook,Twitter, Pinterest, and LinkedIn accounts. It’s all about kidney disease.

Until next week,

Keep living your life!

Bulking Up

While I make sure to state that I’m not a doctor, I’m not always certain my readers get that. This is why I was so glad that a reader asked me a question about her doctor’s advice, prefacing her question by stating that she knows I’m not a doctor. I feel better.

Her question? It’s about fiber and Chronic Kidney Disease. But first, let’s find out exactly what fiber is. According to Harvard’s T. H. Chan School of Public Health at https://www.hsph.harvard.edu/nutritionsource/carbohydrates/fiber/,

Fiber comes in two varieties, both beneficial to health:

  • Soluble fiber, which dissolves in water, can help lower glucose levels as well as help lower blood cholesterol. Foods with soluble fiber include oatmeal, nuts, beans, lentils, apples and blueberries.
  • Insoluble fiber, which does not dissolve in water, can help food move through your digestive system, promoting regularity and helping prevent constipation. Foods with insoluble fibers include wheat, whole wheat bread, whole grain couscous, brown rice, legumes, carrots, cucumbers and tomatoes.

The best sources of fiber are whole grain foods, fresh fruits and vegetables, legumes, and nuts.”

We all know people need fiber, but do you know why? I found the answer stated the most succinctly on Verywell Fit’s site at https://www.verywellfit.com/all-about-fiber-2242215.

“Besides reducing the glycemic effect of meals and contributing to colon health, there is evidence that fiber may benefit us in other ways. It seems to help lower cholesterol and triglycerides, and also may help to prevent:

  • Ulcers, particularly in the beginning of the small intestine (duodenal ulcers)
  • Diabetes
  • Heart Disease
  • Cancer”

As a diabetic, I understand why I need fiber, but what about as a CKD patient? DaVita at https://www.davita.com/diet-nutrition/articles/basics/fiber-in-the-kidney-diet has that one covered:

“Adequate fiber in the kidney diet can be beneficial to people with chronic kidney disease (CKD) because it:

  • Keeps GI (gastrointestinal) function healthy
  • Adds bulk to stool to prevent constipation
  • Prevents diverticulosis (pockets inside the colon)
  • Helps increase water in stool for easier bowel movements
  • Promotes regularity
  • Prevents hemorrhoids
  • Helps control blood sugar and cholesterol”

Hmmm, this is very similar to reasons why everyone – CKD or not – should pay attention to fiber. But, take a look at this list of high fiber foods from the Mayo Clinic at https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/high-fiber-foods/art-20050948:

Fruits                                              Serving size              

Raspberries 1 cup 8.0
Pear 1 medium 5.5
Apple, with skin 1 medium 4.5
Banana 1 medium 3.0
Orange 1 medium 3.0
Strawberries 1 cup 3.0

 

Vegetables Serving size Total fiber (grams)*
Green peas, boiled 1 cup 9.0
Broccoli, boiled 1 cup chopped 5.0
Turnip greens, boiled 1 cup 5.0
Brussels sprouts, boiled 1 cup 4.0
Potato, with skin, baked 1 medium 4.0
Sweet corn, boiled 1 cup 3.5
Cauliflower, raw 1 cup chopped 2.0
Carrot, raw 1 medium 1.5

 

Grains Serving size Total fiber (grams)*
Spaghetti, whole-wheat, cooked 1 cup 6.0
Barley, pearled, cooked 1 cup 6.0
Bran flakes 3/4 cup 5.5
Quinoa, cooked 1 cup 5.0
Oat bran muffin 1 medium 5.0
Oatmeal, instant, cooked 1 cup 5.0
Popcorn, air-popped 3 cups 3.5
Brown rice, cooked 1 cup 3.5
Bread, whole-wheat 1 slice 2.0
Bread, rye 1 slice 2.0

 

Legumes, nuts and seeds Serving size Total fiber (grams)*
Split peas, boiled 1 cup 16.0
Lentils, boiled 1 cup 15.5
Black beans, boiled 1 cup 15.0
Baked beans, canned 1 cup 10.0
Chia seeds 1 ounce 10.0
Almonds 1 ounce (23 nuts) 3.5
Pistachios 1 ounce (49 nuts) 3.0
Sunflower kernels 1 ounce 3.0

*Rounded to nearest 0.5 gram.

Source: USDA National Nutrient Database for Standard Reference, Legacy Release

Looks delicious, doesn’t it. So what’s the problem? Well, CKD patients are restricted in their diets… and even the permissible foods are restricted as far as amounts we can eat. It all depends upon our most current lab results. Do we need less potassium? Then we need to eat even less potassium rich food. The same is true for all the electrolytes. That means our diets may not contain enough fiber.

CKD is an inflammatory disease. Fiber can lower inflammation. So what’s a CKD patient to do?

My reader was recommended supplements by her doctor. One was Solfi Green, something new to me.

I went to MIMS in the Philippines (while a new site to me, they self-describe as “Asia’s one-stop resource for medical news, clinical reference and education”)  at https://www.mims.com/philippines/drug/info/solfi%20green?type=full  for the ingredients and found this:

Ingredients: Fructose, Mixed Fruit Powder, Mixed Vegetable Powder, Soluble Dietary Fiber, Physllium (sic) Husk, Oat Fiber, Wheat Fiber, Citric Acid, Wheat Grass, Alfalfa, Rooibos Extract, Contains Permitted Food Conditioner.”

Wait a minute, Psyllium Husk? I clearly remember writing that this can cause inflammation of the gastrointestinal tract. We need to decrease, not increase inflammation as CKD patients. I would steer clear of this.

Would my reader need to steer clear if she were a dialysis or transplant patient? Drugs.com at https://www.drugs.com/drug-interactions/psyllium.html  doesn’t seem to think any specific dosage reduction is necessary, but they also don’t mention it can cause inflammation or that it is high in potassium. Dialysis patients, beware. If you’re a transplant, you simply need to watch your labs as you would anyway. Just keep in mind psyllium husk can be both an inflammatory and laxative.

Another supplement suggested to my reader is C-lium fiber. I went directly to their website at http://c-liumfibre.com/faq/index.html#Q15  and found this warning in their FAQ:

“If you have rectal bleeding, history of intestinal blockage, difficulty swallowing, diabetes mellitus, heart disease, hypertension, kidney disease, or if you are on a low-sugar or low-sodium diet, contact your doctor before taking C-Lium Fibre.”

Obviously, my reader has gone to her doctor since these two supplements were prescribed by her doctor. I have to make a confession here. When something is prescribed for me, I research it. If I don’t like what I find, I speak with my doctor. If she can explain in more detail or tell me something that is not in my research which I should be aware of to make an informed decision and it’s all positive, I go with the prescription. If not, well….

Of course, you have to make your own decision, just as I do. Here’s hoping this has helped my reader.

Until next week,

Keep living your life!

A Little Bit of This, A Little Bit of That

A long time reader mentioned she had a kind of kidney disease I wasn’t familiar with, so I decided to find out what I could about it. Are you aware of Uromodulin Kidney Disease?

This is what the U.S. National Library of Medicine at https://ghr.nlm.nih.gov/condition/uromodulin-associated-kidney-disease had to say:

“Uromodulin-associated kidney disease is an inherited condition that affects the kidneys. The signs and symptoms of this condition vary, even among members of the same family.

Many individuals with uromodulin-associated kidney disease develop high blood levels of a waste product called uric acid. Normally, the kidneys remove uric acid from the blood and transfer it to urine. In this condition, the kidneys are unable to remove uric acid from the blood effectively. A buildup of uric acid can cause gout, which is a form of arthritis resulting from uric acid crystals in the joints. The signs and symptoms of gout may appear as early as a person’s teens in uromodulin-associated kidney disease.

Uromodulin-associated kidney disease causes slowly progressive kidney disease, with the signs and symptoms usually beginning during the teenage years. The kidneys become less able to filter fluids and waste products from the body as this condition progresses, resulting in kidney failure. Individuals with uromodulin-associated kidney disease typically require either dialysis to remove wastes from the blood or a kidney transplant between the ages of 30 and 70. Occasionally, affected individuals are found to have small kidneys or kidney cysts (medullary cysts).”

Since this is inherited, I suspect the only way to prevent it is gene editing. I researched gene editing a bit but discovered there is quite a bit of controversy as to the legal and ethical aspects of this procedure right now. However, this doesn’t mean it isn’t possible.

The only other information I could find was far too technical for this lay person to understand, much less explain. Readers, do you have more information?

Something else that was new to me this week: pitaya or dragon fruit. I always buy myself a birthday present and this was mine for this year. By the way, thank you to all the readers who took the time to wish me well on my 72nd yesterday. Back to pitaya.

According to Healthline (Thank you again for the two awards.) at https://www.healthline.com/nutrition/dragon-fruit#what-it-is, pitaya is:

“Dragon fruit is a tropical fruit native to Mexico and Central America. Its taste is like a combination of a kiwi and a pear…. Dragon fruit is a low-calorie fruit that is high in fiber and provides a good amount of several vitamins and minerals…. Dragon fruit contains several antioxidants that protect your cells from damage. These include betalains, hydroxycinnamates, and flavonoids…. Animal studies suggest that dragon fruit may improve insulin resistance, liver fat, and heart health. However, the results of human studies are inconsistent…. To date, there have been two reported cases of a severe allergic reaction to dragon fruit.”

I like that it contains less sugar and calories than other tropical fruits, but I didn’t find the taste appealing. It was bland with just a hint of a woody aftertaste. Was it too ripe? Not ripe enough? Surprisingly, my Utah raised son-in-law loves it and jumped at the chance to finish mine.

I ran into what might have been more new information this past week when the P.A. taking my husband’s blood pressure used a wrist monitor on his right wrist. I was always told an arm cuff monitor was better because the pressure was only taken through one bone, whereas there are two in the wrist. I was also told that the left arm was best because it was closer to the heart. This advice was from my PCP’s nurse and that of my nephrologist. However, this P.A. insisted the wrist monitor measures atomic movement of the blood so it didn’t matter whether a wrist or arm cuff were used, nor which arm was used. It didn’t sound right to me.

This is from SlowItDownCKD 2014 and may be helpful here:

“Well, what about the different kinds of blood pressure monitors? I use a wrist monitor which my PCP is simply not thrilled with.  Her feeling is that I’m taking my pressure through two bones, the radius and the ulna, as opposed to only one bone, the humerus, with an arm device. There’s also the finger monitor, but that could be a problem if you have thin or cold fingers.

There are manual and battery operated versions of these monitors.  If you use an arm monitor, be aware that larger cuffs are available if needed. The one thing most blood pressure sites agree upon is that it’s not a good idea to rely on drugstore monitors for your readings.”

I have been researching for over two hours. I cannot find anything about atomic movement within the blood being measured by a blood pressure monitor of any kind. I’ve been to professional pages, checked studies, and even looked at advertisements. So, unless you have other information, I do believe I’ve been had. I just can’t wait to meet this young man at the follow up appointment in two weeks when I’ll ask him for resources and the monitor manufacturers’ information.

On another note, I’ve written about KDIGO during the last two years. This is from SlowItDownCKD 2017 and was repeated in the Sept. 17th blog in 2018.

“This stands for KIDNEY DISEASE | IMPROVING GLOBAL OUTCOMES. Their homepage at KDIGO.org states:

KDIGO MISSION – Improving the care and outcomes of kidney disease patients worldwide through the development and implementation of global clinical practice guidelines.’”

So why mention it again, you ask? Well, you know how I’m always saying I’m not a doctor and neither are you, but doctors need to know what we, as kidney patients, need to say? KDIGO is now inviting patients – including those with CKD – to join their patient network. What better way to be heard as a kidney patient? I joined and I hope you will, too. The link to join is:

https://sydneypublichealth.au1.qualtrics.com/jfe/form/SV_72LdurS2QicQFKd.

This is the announcement the Dr. Joel Topf (on Twitter as @kidney_boy) brought to my attention:

Until next week,

Keep living your life!

At the Heart of the Matter

Happy New Year! Here’s wishing you all a very healthy one. I, on the other hand, found myself in the cardiologist’s office the very first week of 2019. That was odd for me.

It all started when I asked my very thorough primary care physician what – if anything – it meant that my blood pressure reading was ten points higher in one arm than the other. By the way, she’s the one that suggested I take my blood pressure on a daily basis. Her nurse always used the left arm to take the reading, so I did too. Then I got curious about what the reading on the other arm would be and how much difference there would be between arms. I expected a point or two, not ten.

Although my readings had always been a bit high, they weren’t high enough to warrant extra attention… until I mentioned the ten point difference to my PCP. BAM! I had an appointment with the cardiologist.

This information in last year’s April 23’s blog will explain why:

“We know that hypertension is the number two cause of CKD. Moderating our blood pressure will (hopefully) slow down the progression of the decline of our kidney function. Kidney & Urology Foundation of America, Inc. at http://www.kidneyurology.org/Library/Kidney_Health/High_Blood_Pressure_and_Kidney_Disease.php explains this succinctly:

‘High blood pressure makes your heart work harder and, over time, can damage blood vessels throughout your body. If the blood vessels in your kidneys are damaged, they may stop removing wastes and extra fluid from your body. The extra fluid in your blood vessels may then raise blood pressure even more. It’s a dangerous cycle.’

And heart rate? The conclusion of a study published in the Journal of Nephrology reads:

‘Heart rate is an independent age-dependent effect modifier for progression to kidney failure in CKD patients.’

You can read the entire study at https://www.researchgate.net/publication/232714804_Heart_rate

So we know that blood pressure and heart rate are important for Chronic Kidney Disease patients. Just in case you’ve forgotten, heart rate is a synonym for pulse which is the number of times your heart beats a minute.

MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=154135 offers more about what the difference between readings from both arms MAY mean:

“People whose systolic blood pressure — the upper number in their reading — is different in their left and right arms may be suffering from a vascular disease that could increase their risk of death, British researchers report.

The arteries under the collarbone supply blood to the arms, legs and brain. Blockage can lead to stroke and other problems, the researchers noted, and measuring blood pressure in both arms should be routine.

‘This is an important [finding] for the general public and for primary care doctors,’ said Dr. William O’Neill, a professor of cardiology and executive dean of clinical affairs at the University of Miami Miller School Of Medicine.

‘Traditionally, most people just check blood pressure in one arm, but if there is a difference, then one of the arteries has disease in it,’ he said.

The arteries that run under the collarbone can get blocked, especially in smokers and diabetics, he noted. ‘If one artery is more blocked than the other, then there is a difference in blood pressure in the arms,’ O’Neill explained.

‘Doctors should, for adults — especially adult smokers and diabetics — at some point check the blood pressure in both arms,’ he said. ‘If there is a difference it should be looked into further.’

The report appears in the Jan. 30 online edition of The Lancet. ”

Notice I capitalized may. That’s because, in my case, there apparently was no blockage. My cardiologist had a different view of things. He felt there wasn’t a problem unless the difference in readings between your two arms is more than 20 points and that your blood pressure would have to be much higher than my slightly elevated blood pressure before this could be considered a problem.

He made note of my diabetes and congratulated me for taking such good care of myself, especially since I’m a caretaker. I must have looked puzzled because he went on to explain that caretakers sometimes have a sort of martyr complex and are convinced they cannot take the time away from the person they’re caring for to care for themselves. And, yes, he did use the oxygen masks in an airplane analogy to point out how important it is for caretakers to care for themselves first.

Now that I’ve wandered on to the subject of caretakers, seemingly continuing the thread from last week’s blog, here’s a health screening from Path to Wellness that may interest you if you live in Arizona. I urge you to take part yourself and bring anyone you think may be affected or has someone in their lives that may have CKD.

What: The National Kidney Foundation of Arizona will host a FREE health screening, aiming to identify chronic diseases in their early stages in those at highest risk.

When: Saturday, January 26, 2019, 8:30am- 12:00pm (appointments highly recommended**)

Where: Betty Fairfax High School (8225 S. 59th Ave., Laveen, AZ 85339)

Individuals who are 18 years or older and have a family member with diabetes, high blood pressure or chronic kidney disease, OR have high blood pressure or diabetes themselves are urged to attend this important event. Early detection means the possibility of preventing further, life-risking damage to the kidneys.

**Appointments may be scheduled by calling the National Kidney Foundation of Arizona at (602) 840-1644 (English) or (602) 845-7905 / (602)845-7912 (Spanish).

OR

Visit https://azkidney.org/pathtowellness and register online!

This medical screening includes immediate onsite results and medical education and is provided at absolutely no cost. The event is staffed with medical professionals, with the ability to screen 200 attendees.

About Path to Wellness: The Path to Wellness program is the product of a community collaboration between the National Kidney Foundation of Arizona and Cardio Renal Society of America. This January screening is provided in partnership with Adelante Healthcare and the Phoenix Metropolitan Alumnae Chapter, Delta Sigma Theta Sorority, Inc. Sorority, Inc., and generously funded by the BHHS Legacy Foundation. Path to Wellness screenings are unique in that they try to target areas of cities where the high demographics of under-insured or at-risk individuals may have an opportunity to detect chronic health problems early on, in a cost-free environment. The screenings also offer the unique advantage of both on-site results, and post-screening education on chronic disease management.

Until next week,

Keep living your life!

A Different Kind of Fatigue

Busy with the holidays? Chanukah has passed, but we still have Christmas, Kwanzaa, and the New Year coming up. Feeling like you’re just too tired to deal with them? Maybe even fatigued? What’s the difference, you ask. Let’s go to Reuters at https://www.reuters.com/article/us-fatigued-tired-s-idUSCOL75594120070207 for the answer:

“’People who are tired,’ Olson [Dr. Karin Olson, with the faculty of nursing at the University of Alberta] explained, ‘still have a fair bit of energy but are apt to feel forgetful and impatient and experience muscle weakness following work, which is often alleviated by rest.

People who are fatigued, on the other hand, experience difficulty concentrating, anxiety, a gradual decrease in stamina, difficulty sleeping, and increased sensitivity to light. They also may skip social engagements once viewed as important to them.’”

Got it. When I was describing how tired I was to another caretaker, her suggestion was to have my adrenals checked. Hmmm, what does that have to do with Chronic Kidney Disease I wondered. Let’s find out.

First of all, what and where are the adrenals? As I reported in SlowItDownCKD 2016,

“According to Reference.com, a new site for me at https://www.reference.com/science/function-adrenal-gland-72cba864e66d8278:

“Adrenal glands are triangular-shaped, measure approximately 1.5 inches high and 3 inches long and are composed of two parts, according to Johns Hopkins Medicine. The outer part is the adrenal cortex, which creates cortisol, aldosterone and androgen hormones. The second part is the adrenal medulla, which creates noradrenaline and adrenaline.

Cortisol is a hormone that controls metabolism and helps the body react to stress, according to Endocrineweb. It affects the immune system and lowers inflammatory responses in the body. Aldosterone helps regulate sodium and potassium levels, blood volume and blood pressure. Androgen hormones are steroid hormones that are converted to female or male hormones in other parts of the body.

Noradrenaline helps regulate blood pressure, increasing it during times of stress, notes Endocrineweb. Adrenaline is often associated with the adrenal glands, and it increases the heart rate and blood flow to the muscles and the brain.”

Okay then, is adrenal fatigue exactly what it sounds like? According to Dr. James L. Wilson at http://adrenalfatigue.org/what-is-adrenal-fatigue/:

“Adrenal fatigue is a collection of signs and symptoms, known as a syndrome, that results when the adrenal glands function below the necessary level. Most commonly associated with intense or prolonged stress, it can also arise during or after acute or chronic infections, especially respiratory infections such as influenza, bronchitis or pneumonia. As the name suggests, its paramount symptom is fatigue that is not relieved by sleep but it is not a readily identifiable entity like measles or a growth on the end of your finger.

You may look and act relatively normal with adrenal fatigue and may not have any obvious signs of physical illness, yet you live with a general sense of unwellness, tiredness or ‘gray’ feelings. People experiencing adrenal fatigue often have to use coffee, colas and other stimulants to get going in the morning and to prop themselves up during the day.”

I still wanted to know what the connection to CKD was. LiveStrong at https://www.livestrong.com/article/139350-adrenal-glands-kidneys/ had the following to say about the connection:

“Blood Pressure

The adrenals and kidneys also work together to regulate blood pressure. The kidneys make renin, which is a chemical messenger to the adrenals. The renin put out by the kidneys signals the adrenals to make three hormones: angiotensin I, angiotensin II and aldosterone. These hormones regulate fluid volumes, vascular tension and sodium levels, all of which affect blood pressure.

Prednisone

Many kidney patients take prednisone to minimize the amount of protein spilled into the urine by the kidneys. Prednisone also has a powerful effect on the adrenal glands.

Prednisone acts as a corticosteroid, just like the ones produced by the adrenals. When patients take prednisone, the adrenals cease producing corticosteroids. When patients stop taking prednisone, they gradually taper the dosage down to give the adrenal glands the opportunity to ‘wake up’ and start producing corticosteroids again”.

I don’t take prednisone and my blood pressure is under control via medication. Where does this leave me… or you if you’re in the same situation?

I went to WebMD at https://www.webmd.com/a-to-z-guides/adrenal-fatigue-is-it-real#1 for more information.

“Your body’s immune system responds by slowing down when you’re under stress. Your adrenal glands, which are small organs above your kidneys, respond to stress by releasing hormones like cortisol. They regulate your blood pressure and how your heart works.

According to the theory, if you have long-term stress (like the death of a family member or a serious illness), your adrenal glands can’t continuously produce the extra cortisol you need to feel good. So adrenal fatigue sets in.”

This makes sense to me, although adrenal fatigue is not accepted by the Endocrine Society as a diagnose and there are warnings that accepting it as one may mask another problem (read disease) with the same symptoms. I am a caretaker as well as a CKD patient. I am under constant stress even when I’m sleeping. You’ve heard of sleeping with one eye open? I sleep with one ear open, but I do sleep so I can rule out tiredness.

While writing this blog has helped me understand what adrenal fatigue is and how it might affect me, I’m still going to keep my cardiology appointment to explore why my blood pressure is often ten points higher in one arm than another. That’s also a possible heart problem. Maybe adrenal fatigue is affecting how my heart is working … or maybe it’s a blockage somewhere. Why take a chance?

In the meantime, I intend to partake of as many of those holiday party invitations as I can. I can always come home early if I have to or I can rest before they start. Here’s hoping you do the same whether or not you think you have adrenal fatigue.

Oh, there’s still plenty of time to order any of my books on Amazon.com or B&N.com in time for the remaining holidays. There are links to the right of the blog for the kidney books. Click on these links for the fiction: Portal in Time and Sort of Dark Places.

Until next week,

Keep living your life!

Happy Holidays!

The holiday season is upon us full strength right now, but you have Chronic Kidney Disease. You don’t need the stress associated with the holiday season. The National Kidney Fund at https://www.kidney.org/atoz/content/Stress_and_your_Kidneys explains why:

“As the blood filtering units of your body, your kidneys are prone to problems with blood circulation and blood vessels. High blood pressure and high blood sugar can place an additional strain or burden on your kidneys. People with high blood pressure and diabetes are at a higher risk for kidney disease. People with kidney disease are at higher risk for heart and blood vessel disease. If you already have heart and blood vessel disease and kidney disease, then the body’s reactions to stress can become more and more dangerous. Therefore, whether your goal is to prevent heart and/or kidney disease, or improve your health while living with heart and/or kidney disease, managing stress is an important part of maintaining your overall health.”

So what’s a CKD patient to do? First, you need to identify that you are stressed. In an article on caretaker stress at https://www.davita.com/education/ckd-life/caregiver/caregiver-stress-and-chronic-kidney-disease, DaVita outlined some of the symptoms. These are the same whether you’re the patient or the caretaker. I happen to be both a CKD patient and my Alzheimer’s husband’s caretaker, although we call me his care partner as suggested by the Alzheimer’s Association.

Physical signals

  • Inability to sleep or sleeping too much
  • Weight gain or loss
  • Feeling tired all the time
  • Change in posture—walking with your head down or with a stooped posture
  • Chronic headaches, neck pain or back pain

Emotional signals

  • Anger
  • Frequent crying spells
  • Inability to think clearly or concentrate
  • Excessive mood swings
  • Feelings of sadness that don’t go away

Behavioral signals

  • Withdrawing from usual activities and relationships
  • Quitting or changing jobs frequently
  • Becoming more impulsive and over-reacting to things
  • Using alcohol or drugs to feel better

Uh-oh, I recognize quite a few of these in myself. How about you?

Today is the last day of the eight day Chanukah celebration for us and all of you who celebrate this holiday. We usually throw a blowout party for anywhere from 30 to 50 people. But just a couple of months ago, we hosted a blowout pre-wedding potluck party for my daughter and her fiancé … and it was wonderful. Yet, it was clear that we can no longer handle undertaking such large parties. I had expressed my doubts last year about how long we’d be able to keep up the Chanukah party.

I was getting more and more stressed dealing with Bear’s medical issues and my own and then the party, so I did what I consider the logical thing to do, I delegated. We’ll still have the party, but a friend of my daughter’s will be hosting it. Instead of assigning different foods to specific guests, we’ve asked them to let us know what they’re be bringing. No prepping of the house (Shiloh sheds an entire other dog every few days) and no post party clean up. More importantly, no stress. I just bring the religious articles necessary and toss in a batch of cranberry chicken as my food contribution. Easy-peasy.

My very capable neighbor came in with cookies she’d just baked the other day. She knows about Bear’s sweet tooth. We started chatting as we’re wont to do and she brought up the point that she finds delegating stressful. Amy wants to make sure whatever it is that’s being delegated is done and done well, so she has to be careful about who she choices. I see her point, but I think that if you know your friends and family and how responsible (or not) each is, this shouldn’t be a problem.

But enough about me. What else can you do to reduce your stress at this time of year?

One thing is make sure you aren’t overeating. Avoiding comfort eating can be a real struggle. According to Baylor College of Medicine’s Dr. Sreedhar Mandayam in an article at https://medicalxpress.com/news/2017-11-overeating-holidays-bad-kidneys.html,

“For people with kidney disease, even eating normal amounts of food puts stress on their kidneys. If you consume large amounts of carbohydrates, protein or fat the stress on an overworked, half functioning kidney will get even worse and can accelerate your kidney dysfunction.”

How about exercising? This is when I get on the exercise bike and watch a good movie. Why? The Mayo Clinic at  https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/exercise-and-stress/art-20044469 explains far better than I could:

Exercise increases your overall health and your sense of well-being, which puts more pep in your step every day. But exercise also has some direct stress-busting benefits.

  • It pumps up your endorphins. Physical activity helps bump up the production of your brain’s feel-good neurotransmitters, called endorphins. Although this function is often referred to as a runner’s high, a rousing game of tennis or a nature hike also can contribute to this same feeling.
  • It’s meditation in motion. After a fast-paced game of racquetball or several laps in the pool, you’ll often find that you’ve forgotten the day’s irritations and concentrated only on your body’s movements.

As you begin to regularly shed your daily tensions through movement and physical activity, you may find that this focus on a single task, and the resulting energy and optimism, can help you remain calm and clear in everything you do.

  • It improves your mood. Regular exercise can increase self-confidence, it can relax you, and it can lower the symptoms associated with mild depression and anxiety. Exercise can also improve your sleep, which is often disrupted by stress, depression and anxiety. All of these exercise benefits can ease your stress levels and give you a sense of command over your body and your life.

 

Of course, you could give yourself permission to curl up with a good book for half an hour or so. You might like Portal in Time or Sort of Dark Places for sheer escapism or any of the SlowItDownCKD series (including What Is It and How Did I Get It? Early Stage Chronic Kidney Disease) for edifying yourself. Oh, the shameless self-promotion here! All are available on Amazon although,personally, if I’m stressed, I want pure escapism.

 

Until next week,

Keep living your life!

Say That Again

I have been uttering that phrase for years, maybe even a decade. Each time I went for a hearing test, I was told I was getting there, but I didn’t need hearing aids yet. This year it changed. I’ll bet it’s because I have CKD.

This is from SlowItDownCKD  2011:

“Research shows that hearing loss is common in people with moderate Chronic Kidney Disease. As published in the American Journal of Kidney Diseases and highlighted on the National Kidney Foundation web site, a team of Australian researchers found that older adults with moderate Chronic Kidney Disease (CKD) have a higher prevalence of hearing loss than those of the same age without CKD.”

How moderate CKD and hearing are connected is another matter, one that apparently isn’t as well documented. Here’s what I found on Timpanogos Hearing and Balance’s website at https://utahhearingaids.com/hearing-loss-likely-individuals-chronic-kidney-disease/ and the other sites I searched. This comes from the same Universtiy of Sydney study I cited in my 2011 blog.  A study that was completed in 2010… eight years ago.

“The link between hearing loss and CKD can be explained by structural and functional similarities between tissues in the inner ear and in the kidney. Additionally, toxins that accumulate in kidney failure can damage nerves, including those in the inner ear. Another reason for this connection is that kidney disease and hearing loss share common risk factors, including diabetes, high blood pressure and advanced age.”

Wait a minute. I wrote about this in SlowItDownCKD 2014, too:

“Suddenly it became clear. If toxins are – well – toxic to our bodies, that includes our ears. My old friend The Online Etymology Dictionary tells us the word toxic is derived directly from late Latin toxicus, which means ‘poisoned.’

Now I got it. Moderate CKD could be poisoning our bodies with a buildup of toxins. Our ears and the nerves in them are part of our body. Damaged nerves may cause hearing loss. I’d just never thought of it that way before. Sometimes all it takes is that one last piece of the puzzle to fall in place.

Hmmm. High blood pressure is the second most common leading cause of CKD and it can also lead to hearing loss. Let’s take a look at that.

According to WebMD

‘Certain illnesses, such as heart disease, high blood pressure, and diabetes, put ears at risk by interfering with the ears’ blood supply.’

I went right to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to figure out how since it includes a diagram from The National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health that demonstrates how high blood pressure is caused… and if you read on, you’ll read about the problems high blood pressure causes….and this sentence:

‘Humans have 10 pints of blood that are pumped by the heart through the arteries to all the other parts of the bodies.’

That would include the ears. Moderate CKD might mean that blood is tainted by the toxins our compromised kidneys could not rid us of.”

I was frustrated at not finding any more recent research, but sometimes you just have to take what you can get… like now.

I thought of an online hearing test I’d heard (Ouch! Poor word choice there.) about and decided to give it a try since it asked questions rather than having you listen to sounds as you would in an audiologist’s office. Here are my results from the  Better Hearing Institute at http://www.betterhearing.org/check-your-hearing

“SUMMARY

 Your hearing loss would be described as: Mild Hearing Loss. A hearing test may be necessary to monitor your hearing loss.

DETAIL REPORT

 Your Check Score: You scored 21 out of a possible 60 points. The remainder of this report will tell you what your score means.

Your Check Norm: Your score of 21 is at the 19 percentile of people with hearing loss in the United States, where low percentages mean lower hearing losses and high percentages mean more serious hearing losses compared to other people with hearing loss….

Subjective Hearing Loss Description: Based on the responses of more than 10,000 people with hearing loss and their family members, they would describe your hearing loss as: Mild Hearing Loss.

What Your Hearing Loss Means for Your Quality of Life: Research has shown that the higher your predicted hearing loss, the more likely the following quality-of-life factors may be negatively affected:

  • irritability, negativism and anger
  • fatigue, tension, stress and depression
  • avoidance or withdrawal from social situations
  • social rejection and loneliness
  • reduced alertness and increased risk of personal safety
  • impaired memory and ability to learn new tasks
  • reduced job performance and earning power
  • diminished psychological and overall health

What should you do next? Based on your score, we recommend the following: A hearing test may be necessary to monitor your hearing loss. Now hearing loss is situational, and the next step you take is dependent on your need to hear in various listening situations. Some people can live with mild hearing losses. Others, such as teachers and therapists whose auditory skills are very important for their everyday work, require corrective technology — such as hearing aids — even when their hearing loss is at mild levels. It becomes important for them to do something about their hearing loss so they can function adequately in their work environment….

References:

To review the study this report is based on visit:
http://www.betterhearing.org/hearingpedia/bhi-archives/eguides/validity-and-reliability-bhi-quick-hearing-check

To review research on hearing loss and quality of life visit:
www.betterhearing.org/hearingpedia/counseling-articles-tips/impact-treated-hearing-loss-quality-life as well as the following publication conducted by the National Council on the Aging (NCOA):
Hearing Aids and Quality of Life

My audiologist will be introducing me to hearing aids in the new year. I thought I had considered all the ramifications of CKD. And, frankly, I thought I understood what was happening to my kidneys. It looks like I did understand the loss of some kidney function… just not how that would affect the rest of my body.

I don’t know whether to break out the duct tape or the crazy glue to keep this aging body in one piece. Are you laughing? Good, because I wanted to have this Chanukah blog leave you in a good mood. I know, I’ll break out the dreidles in your honor. Happy Chanukah!

Until next week,

Keep living your life!

Something New and Entirely Different

I sit here trying to write this week’s blog and being interrupted every five minutes by a long involved commentary about one thing or another. Why do I tolerate it? Because it’s Bear, my Bear, my husband who is interrupting. Why not just ask him not to, you say. Well, it’s involved. Basically, it’s because he has Alzheimer’s, doesn’t know how long winded he’s being, and feels terribly insulted when I ask him not to interrupt so I can write.

Sometimes, we can have a conversation without the interruptions and without the involved commentary. Obviously, not right now, but during one of these conversations, I explained to him that I had been asked to write about his Alzheimer’s but felt I needed to preserve his privacy. This good man blew that up. He said something to the effect that if it’s going to help even one person to know what he experiences, what I experience, with this disease, then I was obliged to write about it. His privacy wasn’t more important than that.

Now you have just an inkling of why I love him… and I do, Alzheimer’s or not. Since this is my kidney disease blog, it would make sense to look for any connections between Alzheimer’s and kidney disease. If they exist, that is.

I was not happy to find the following on The National Kidney Foundation’s page at https://www.kidney.org/news/ekidney/august08/Dementia_august08

“People with albuminuria were about 50% more likely to have dementia than people without albuminuria, Dr. Joshua I. Barzilay, at Emory University School of Medicine in Atlanta, Georgia, and his research team report. The association between the two conditions was still strong after controlling for age, education and risk factors, such as high blood pressure, diabetes, smoking, and cholesterol levels. There was a weaker relationship between albuminuria and mild cognitive impairment.”

By now it’s common knowledge to my readers that diabetes is the foremost cause of Chronic Kidney Disease with high blood pressure (hypertension) being the second.

How about some reminders right about now?

The American Diabetes Association at http://www.diabetes.org/diabetes-basics/common-terms/?loc defines the most common type of diabetes in the following manner:

“diabetes mellitus (MELL-ih-tus)
a condition characterized by hyperglycemia resulting from the body’s inability to use blood glucose for energy. In Type 1 diabetes, the pancreas no longer makes insulin and therefore blood glucose cannot enter the cells to be used for energy. In Type 2 diabetes, either the pancreas does not make enough insulin or the body is unable to use insulin correctly.”

As for high blood pressure, also known as hypertension, The National Library of Medicine PubMed Health was able to help us out:

“It happens when the force of the blood pumping through your arteries is too strong. When your heart beats, it pushes blood through your arteries to the rest of your body. When the blood pushes harder against the walls of your arteries, your blood pressure goes up.”

Keep this in mind for later. Here’s the definition of albumin from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

Albumin: Water soluble protein in the blood.

As mentioned in SlowItDownCKD 2013, “according to the physicians’ journal BMJ: ‘albuminuria [is] leakage of large amounts of the protein albumin into the urine.’”

Many of us with CKD have albuminuria at one time or another. Does that mean that 50% of us are going to develop dementia? No, not at all. According to the National Kidney Foundation, that 50% of us with albuminuria are MORE LIKELY to develop dementia, not GOING TO.

I get it. By now, most of you are probably asking what Alzheimer’s has to do with dementia. I popped right over to the Alzheimer’s Association’s (my new best friend) website at https://www.alz.org/alzheimers-dementia/what-is-alzheimers  for an explanation.

“Alzheimer’s is a type of dementia that causes problems with memory, thinking and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks.”

I’ll bet you want a definition of dementia now. Let’s go to Healthline.com at https://www.healthline.com/health/dementia for one:

“Dementia is a decline in cognitive function. To be considered dementia, mental impairment must affect at least two brain functions. Dementia may affect:

  • memory
  • thinking
  • language
  • judgment
  • behavior”

It’s not surprising that the two definitions look so much alike. Alzheimer’s is one of the ten kinds of dementia that I know about. Different websites have different numbers for how many different kinds of dementia there are. I used the information from MedicineNet at https://www.medicinenet.com/dementia/article.htm#what_are_alzheimers_vascular_and_frontotemporal_dementia

Did you keep the definition of albumin in mind? The key word in that is protein… and that’s where the connection between Alzheimer’s and CKD lies. The information is from an unusual source for me to use, Science Magazine at https://www.sciencemag.org/news/2018/01/alzheimer-s-protein-may-spread-infection-human-brain-scans-suggest:

 “Tau is one of two proteins—along with β-amyloid—that form unusual clumps in the brains of people with Alzheimer’s disease. Scientists have long debated which is most important to the condition and, thus, the best target for intervention. Tau deposits are found inside neurons, where they are thought to inhibit or kill them, whereas β-amyloid forms plaques outside brain cells.”

I realize this is getting very technical and may concentrate on particular elements of this connection in future blogs, but right now, I’d like to remind you that the National Kidney Fund is hosting a webinar “Eating healthy with diabetes and kidney disease” in recognition of National Diabetes Awareness Month on Wednesday, November 28, 2018 from 1:00 – 2:00 p.m. EST.

Again, diabetes… the number one cause of Chronic Kidney Disease. Read more about CKD, diabetes, and hypertension (as well as many other topics) in the SlowItDownCKD series and What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. All eight books are available in print and digital on Amazon.com and B & N.com.

Did you know that the first day of Chanukah is December 3rd? We start celebrating Chanukah the night before the first day and celebrate for eight nights… and there are eight books. What a coincidence! (Just planting a seed here, folks.)

Until next week,

Keep living your life!

Shining a Light on 1in9 

Last week, I began my blog post by mentioning that kidney disease awareness advocates have a habit of finding each other. This time, we had a little help.  I transferred to a new nephrologist because he was so much closer to my house. We spent some time getting to know each other as people new to each other do. Then he told me about another patient of his who is also working on spreading awareness, but via a documentary. Raymond, a transplant recipient that you’ll meet in a moment, and his brother who is also his donor, are both veterans. It made sense to me when his wife and partner on their documentary, Analyn Scott, suggested I post her guest blog about their project today since Veterans’ Day which was yesterday. Readers, meet Analyn; Analyn, meet the readers of the blog.

By now it shouldn’t surprise me that as I’m out and about I’m constantly meeting more and more people with a connection to kidney disease. That was not the case 21 years ago, or even four years ago for that matter. What changed? The opening of my eyes to statistics I was previously unaware of, and frankly I found to be quite shocking and unacceptable. I’ll get to those stats a little later.

21 years ago this month I met my now husband, Raymond Scott, on a blind date. A year out of the Army, here was this 29 year old handsome, kind, Southern gentlemen that swept me off my feet. Little did either of us know that three months later his kidneys would unexpectedly fail and that our journey would lead us to where we are today.

Like many others, although Raymond ‘crashed’ into dialysis, his previous medical records revealed that he had Kidney Disease, but he was not properly made aware of his status or what he could do to improve it. So our journey with Chronic Kidney Disease (CKD) began together with Raymond finding out he had End Stage Renal Disease (ESRD) and needing to start on dialysis right away.

Throughout the past 20, going on 21 years, Raymond has been on both peritoneal dialysis and in-center hemodialysis, had a kidney transplant that lasted for five years, and for the past five years has his hemodialysis treatments administered by me five days a week from the comforts of our home. With that, we’ve also had many twists and turns with Raymond’s health that often go along with ESRD. But, despite our own experiences, it wasn’t until we were invited as guests to attend the National Kidney Foundation’s Dancing With The Stars Arizona 2015 Gala that our eyes would start to be opened to the staggering statistics surrounding Kidney Disease.

As we enjoyed the lively and energetic dance performances I turned to Raymond and teasingly said, “Hey, that could be you dancing next year.” My eyes got big and my giggles stopped, and before I could get the words out of my mouth, Raymond already knew that look on my face very well and anticipated my next words, “Wait, why not you? You can do this!.”

Sure enough, Raymond was the first celebrity star dancer who was an active dialysis patient at the National Kidney Foundation’s 10th Annual Dancing With the Stars Arizona Gala on February 20th, 2016…..18 years to the exact day that his kidneys failed! He and his dance partner and instructor, Brianna Santiago, spent six months of grueling practices preparing for their energetic performance to Pharrell William’s song Happy, demonstrating the improved quality of life home dialysis can provide, and that dialysis does not have to be a death sentence.

As we picked up the torch of advocacy, we were led to start filming a documentary and create a non-profit organization to create hope and change the trajectory of kidney disease. As I was brainstorming with a dear friend about potential names for the organization, she said, “Wait, go back to that statistic you mentioned: 26 Million Americans, 1 in 9 adults have Kidney Disease….that’s it…..1in9.” That and meeting our incredible videographer was how 1in9 was birthed!

You may have guessed it, but 1 in 9 American adults having Kidney Disease was one of those stats that caught us off guard. And hearing that 90% of those with CKD weren’t aware was totally unacceptable to us. Diabetes is the leading cause of Kidney Disease, and high blood pressure….which took Raymond’s kidneys….is second. Kidney disease is the ninth leading cause of death in the U.S. and kills more people than breast cancer or prostate cancer. Surprising, right? It sure was to us, and we figured if this was news to us after all these years of living with it, then the general population must really be in the dark.

Our vision for 1in9 is to save millions of lives globally through awareness, prevention, and expedited research and development of regenerative medicine treatments and solutions. Last year our family headed out across country on an RV tour to raise awareness and film, while keeping up Raymond’s dialysis treatments five days a week on the RV. We met some incredible people near and far that continue to inspire us to keep pushing the wheels of change. Like our friends at…..

University of Arizona http://deptmedicine.arizona.edu/news/2017/1in9-kidney-challenge-founders-visit-ua-nephrology-faculty-researchers

Washington University https://nephrology.wustl.edu/1in9-kidney-awareness-documentary-visits-division-nephrology/

The Veterans’ Administration Medical Center in Washington DC https://www.washingtondc.va.gov/features/Living_Well_with_Kidney_Disease.asp

And our visit to UCSF with Dr. Shuvo Roy, co-Director of The Kidney Project, where we were able to hold the 3D printed bio-artificial kidney prototype in our own hands! Friends, if you haven’t already heard, change is not only on the way, it’s here!

We are still filming our documentary, releasing our 1in9 Compilation Book next March, and excited about other impactful programs we are launching that will help us bring Kidney Disease out of the public shadows of silence and misunderstanding and confront it head on with solutions.

To learn more and link arms to help keep the torch illuminating bright on our life saving mission please visit, follow, and/or contact us at: www.1in9kidneychallenge.com 
www.facebook.com/1in9kidneychallenge/ 1in9kidneychallenge@gmail.com

Analyn and Raymond have asked me to contribute a chapter to their book. I will be delighted to do so. As a Chronic Kidney Disease awareness advocate, I can’t begin to tell you how much pleasure I have at meeting more and more people with the same mission in life. We get to help each other spread awareness.

Until next week,

Keep living your life!

For the Younger Women

You’d think that leaves me out, but you’d be wrong. I’m writing for pre-menopausal women…and for anyone who wants to know what menstrual cycles have to do with Chronic Kidney Disease. I’m one of those who wants to know.

I was already in my sixties when I was diagnosed with CKD, but I have many woman readers who have not yet reached that rite of passage known as menopause. Does their menses have any effect on their CKD, I wondered? Or, conversely, does their CKD have any effect on their menses?

Back to the beginning for those who have just plain forgotten what the menses is and why women experience it. Thank you to the Medical Dictionary at https://medical-dictionary.thefreedictionary.com/menses for starting us off today. Menses is:

“the periodic discharge from the vagina of blood and tissues from a non-pregnant uterus; the culmination of the menstrual cycle. Menstruation occurs every 28 days or so between puberty and menopause, except during pregnancy, and the flow lasts about 5 days, the times varying from woman to woman.”

I clearly remember the days of anxiously awaiting my period only to find I had miscalculated its start. Commence the washing-out-the-underwear-nightly-during-my-period era which lasted decades. It was messy, but apparently menstruation was necessary. Why? you ask.

Back to Wikipedia. By the way, when I was teaching research writing in college, I always found this a good source to start researching from despite the fact that anyone can edit it. This is the explanation I was looking for. I found it at https://en.wikipedia.org/wiki/Menstrual_cycle.

“The menstrual cycle is the regular natural change that occurs in the female reproductive system (specifically the uterus and ovaries) that makes pregnancy possible. The cycle is required for the production of oocytes [Me here: this means an immature egg] and for the preparation of the uterus for pregnancy….”

As someone who had always planned to be a mother, you can see why I felt this was a necessary – albeit messy – function of my body. I have a biological grandchild and another being planned. Thank you, menstruation.

But what if I had developed CKD when I was premenopausal? Would things have been different for me? DaVita at https://www.davita.com/education/kidney-disease/risk-factors/womens-health-risks-and-chronic-kidney-disease-ckd explains some of what I might have had to deal with.

“When a woman has chronic kidney disease her periods tend to be irregular. Once she begins dialysis her periods may even stop altogether. As kidney function drops below 20 percent of normal, a woman is less likely to conceive because dialysis doesn’t perform all of the tasks of the kidneys. The body retains a higher level of waste products than it would with a normal kidney, which can prevent egg production and affect menstruation.

Erythropoietin treatments will cause about 50 percent of woman on dialysis to get their periods again. This is attributed to the improved hormone levels and the treatment of anemia. Therefore, erythropoietin treatments can increase a woman’s fertility, so birth control should be used if a woman is sexually active and does not want to become pregnant.”

Okay, but I’m not on dialysis and my GFR hovers in the 50-55% range. I see from the quote above that my periods might have become irregular. I also noted that a ‘higher level of waste products is being retained.” (Why does that give me the creeps?)

Let’s go back to those waste products. Remember what they are? Shodor, a site for undergraduate students, at https://www.shodor.org/master/biomed/physio/dialysis/kidney.htm was helpful here:

“The kidneys are the filtering devices of blood. The kidneys remove waste products from metabolism such as urea, uric acid, and creatinine by producing and secreting urine. Urine may also contain sulfate and phenol waste and excess sodium, potassium, and chloride ions. The kidneys help maintain homeostasis by regulating the concentration and volume of body fluids. For example, the amount of H+ and HCO3  secreted by the kidneys controls the body’s pH.”

Whoa! I wouldn’t want even more of these substances in my body. Not only would they make the CKD worse, but also its effects on my body. According to Medical News Today at https://www.medicalnewstoday.com/articles/172179.php, these effects include:

  • anemia
  • blood in urine
  • dark urine
  • decreased mental alertness
  • decreased urine output
  • edema – swollen feet, hands, and ankles (face if edema is severe)
  • fatigue (tiredness)
  • hypertension (high blood pressure)
  • insomnia
  • itchy skin, can become persistent
  • loss of appetite
  • male inability to get or maintain an erection (erectile dysfunction)
  • more frequent urination, especially at night
  • muscle cramps
  • muscle twitches
  • nausea
  • pain on the side or mid to lower back
  • panting (shortness of breath)
  • protein in urine
  • sudden change in bodyweight
  • unexplained headaches

Is there anything else I should know?

The Huffington Post at https://www.huffingtonpost.com/leslie-spry-md-facp/women-with-chronic-kidney_b_10163148.html let Dr. Leslie Spry, Spokesman for the National Kidney Foundation, answer this one and I will, too.

“Women with CKD have been shown to commonly experience menstrual irregularities. This can include excessive bleeding, missed periods, and early onset of menopause. In studies of patients with CKD, women enter menopause from 3 to 5 years earlier than patients without CKD. Treatment can be very challenging. Studies of estrogen replacement therapy have shown an increased risk of heart disease and blood clotting disorders. Kidney transplantation will usually correct these abnormalities.”

Now I wonder if I’d had CKD even earlier than when I’d caught it on a lab report a decade ago. Excessive bleeding? Check. Early menopause? Check. Hmmm.

But wait. There’s some good news in here, too.

“’Thus, recurring changes of sex hormone levels, as brought about by the natural menstrual cycle, might be involved in periodic tissue remodeling not only in reproductive organs, but to a certain extent in the kidneys as well,’ she added.

Lechner [Me here: She’s the study author – Dr. Judith Lechner, of the Medical University of Innsbruck in Austria] hypothesizes that estrogen might help to replace damaged cells. During cycle phases of high estrogen exposure, kidney cells might be induced to grow, she explained, ‘while at time points of decreasing estrogen levels damaged or simply older cells might be discarded into the urine.’”

You can read more about this small study published in the Journal of the American Society of Nephrology in Medical Daily at https://www.medicaldaily.com/sex-differences-menstrual-cycle-kidney-failure-384251.

Now I know… and so do you. Younger women, your CKD menstrual future may not be as dismal as you’d thought.

Until next week,

Keep living your life!

Backed Up

Granted this is weird, but I have wondered for quite a while what – if anything – constipation has to do with Chronic Kidney Disease. Maybe my memory is faulty (Hello, brain fog, my old friend), but I don’t remember having this problem before CKD entered my life… or did I?

In my attempt to find out if there is a connection, I hit pay dirt on my first search.

“Chronic kidney disease (CKD) and end-stage renal disease (ESRD) are more likely to develop in individuals with constipation than in those with normal bowel movements, according to a new study published online in the Journal of the American Society of Nephrology.

More severe constipation, defined as using more than one laxative, was associated with increasing risks of CKD and its progression.”

You can read the entire Renal and Urology News article at https://www.renalandurologynews.com/chronic-kidney-disease-ckd/constipation-associated-with-ckd-esrd-risk/article/572659/.

Wait a minute. This is not quite as clear as I’d like it to be. For example, what exactly is constipation? The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/digestive-diseases/constipation was of help here:

“Constipation is a condition in which you may have fewer than three bowel movements a week; stools that are hard, dry, or lumpy; stools that are difficult or painful to pass; or a feeling that not all stool has passed. You usually can take steps to prevent or relieve constipation.”

Well then, what’s severe constipation? A new site for me, HealthCCM at https://health.ccm.net/faq/267-acute-constipation defines severe or acute constipation as,

“Acute constipation is usually defined by a slowing of intestinal transit generating a decrease in bowel movements and the appearance of dehydration. The person will have difficulty defecating or may not be able to at all.”

This sounds downright painful, so let’s go back to my original query about how constipation and CKD relate to each other.

But first I want to share this very clear explanation of how constipation happens from Everyday Health at https://www.everydayhealth.com/constipation/guide/.

“The GI tract, which consists of a series of hollow organs stretching from your mouth to your anus, is responsible for digestion, nutrient absorption, and waste removal.

In your lower GI tract, your large intestine, or bowel — which includes your colon and rectum — absorbs water from your digested food, changing it from a liquid to a solid (stool).

Constipation occurs when digested food spends too much time in your colon.

Your colon absorbs too much water, making your stool hard and dry — and difficult for your rectal muscles to push out of your body.”

Keep in mind that diabetes is the number one cause of CKD as you read this. According to the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/constipation/symptoms-causes/syc-20354253

“Hormones help balance fluids in your body. Diseases and conditions that upset the balance of hormones may lead to constipation, including:

  • Diabetes
  • Overactive parathyroid gland (hyperparathyroidism)
  • Pregnancy
  • Underactive thyroid (hypothyroidism)”

Many of the sites I perused suggested drinking more water to avoid or correct constipation. But we’re CKD patients; our fluid intake (Well, mine, anyway) is restricted. I’m already drinking my maximum of 64 ounces a day. In the words of Laurel and Hardy’s Hardy, “Well, here’s another nice mess you’ve gotten me into!” It’s possible constipation contributed to my developing CKD and drinking more may help, but with CKD you’re limited to how much you can drink.

Another suggestion I ran into on many sites was increase your fruit and vegetable intake. Great, just great. I’m already at my maximum of three different fruits and three different vegetables – each of different serving sizes, mind you – daily.

Wikipedia at https://en.wikipedia.org/wiki/Constipation#Medications has a great deal of information about constipation. Remember though that anyone can edit any Wikipedia article at any time. Be that as it may, this sentence leaped out at me:

“Metabolic and endocrine problems which may lead to constipation include: hypercalcemiahypothyroidismhyperparathyroidismporphyriachronic kidney diseasepan-hypopituitarismdiabetes mellitus, and cystic fibrosis….”

Thank you, MedicineNet for reminding us that iron can cause constipation. How many of us (meaning CKD patients) are on iron tablets due to the anemia that CKD may cause? I realize some patients are even taking injections of synthetic iron to help with red blood production, something the kidneys are charged with and slow down on when they are in decline.

Apparently, another gift of aging can be constipation since your metabolic system slows down. That’s also what makes it so hard to lose weight once you reach a certain weight. I’m getting a lot of information here, but I’m still not clear as to how one may cause the other. Let’s search some more.

I think I just hit something. We already know that diabetes is the number one cause of CKD. Did you remember that high blood pressure is the second most usual cause of CKD? Take a look at this from Health at https://www.health.com/health/gallery/0,,20452199,00.html#inflammatory-bowel-disease-3:

“Constipation can be a side effect of some common drugs used to treat high blood pressure, such as calcium channel blockers and diuretics.

Diuretics, for instance, lower blood pressure by increasing urine output, which flushes water from your system. However, water is needed to keep stools soft and get them out of the body.”

Now we’re getting somewhere.

It gets even better. The American Association of Kidney Patients at https://aakp.org/dialysis/relieving-constipation/ not only offered more clarification, but offered a list of high fiber foods without going over most of our potassium and phosphorous limits. Fiber intake is considered another way to both avoid and help with constipation.

“Adults need 20-35 grams of fiber daily. However, for dialysis patients who have to limit their fluid intake, this may be too much since it is thought increased dietary fiber may require an increased fluid intake. Also, all patients are different so the amount of fiber needed to relieve constipation varies from person to person.

High Fiber Foods

Bran muffin                 ½ muffin

Brown rice (cooked)   ½ cup

Broccoli*                    ½ cup

Peach                          1 medium

Prunes*                       3

Prunes*                       3

Spaghetti (cooked)      ½ cup

Turnips*                      ¾ cup

(Each serving contains about 150mg potassium, 20-90mg phosphorus and 1 – 5.4 grams of fiber.) (*Items contains 2 or more grams of fiber per serving.)”

I’ve got the connection between constipation and CKD now; do you?

Until next week,

Keep living your life!

Cindy Tells All

On June 11th of this year, I wrote about Polycystic Kidney Disease after having met Cindy Guentert-Baldo at a kidney event. She has a type of kidney disease that I had no clue about until she started explaining it. What she had to say caught my attention, so I asked her if she would be willing to guest blog. I knew she had a family and is both a lettering artist and YouTube creator. That’s a lot of busy, especially if you’re dealing with a chronic illness. Luckily for us, she was able to work a guest blog into her busy schedule.

*****

In some ways, I live the typical middle class American mom life. I have a middle schooler and a high schooler. I work from home, my husband works a 9-5 in an office. The kids go to school, do their homework, go to activities. I have coffee dates with friends and dinner out with family, we go to the movies, we stay home and do yard work. Same routine, same rhythm as so many other families we know.

This picture doesn’t tell the whole story: I have polycystic kidney disease. I am currently in Stage 4, with my eGFR hovering around 25. My kidneys, at last measurement, were 27 and 25 cm in length.

Part of my daily rhythm is taking 10 different medications to control my blood pressure, manage other symptoms of being in Stage 4 of kidney disease and to help with my pain levels. Another part is having to take breaks when my energy flags or my pain levels get high enough to make sitting at a desk impossible. My kids have learned to read my body language so they know when Mom’s having a bad pain day. They’ve also learned to not hug me around my stomach, as my kidneys are so large that a loving hug could send me to bed for a few days.

I’ve burst a cyst making my bed, tying my shoe, twisting at the waist. I currently have a cyst the size of a healthy kidney underneath my left ribs that is a constant reminder that I am sick.

Aside from the physical problems that come with ADPKD (Let me help Cindy out here with a definition from emedicine at https://emedicine.medscape.com/article/244907-overview: “Autosomal dominant polycystic kidney disease (ADPKD) is a multisystemic and progressive disorder characterized by cyst formation and enlargement in the kidney … and other organs (eg, liver, pancreas, spleen). Up to 50% of patients with ADPKD require renal replacement therapy by 60 years of age.”), there is also the emotional baggage I carry.

This disease is genetic – I have multiple family members in different stages. In some ways, I am grateful to have people to talk to who understand without my having to explain. On a recent vacation my sister (who is in Stage 5) and I lay next to each other and just let out our frustrations and difficulties, knowing we had someone listening who understood. Our grandmother is in her 15th year with her transplant – she has impressed upon us how crucial it is to be informed about the disease in general and our health specifically.

I carry a lot of emotional, painful baggage due to this disease. Our father passed away from a brain stem aneurysm at age 40, brought on due to high blood pressure and PKD. My sister and I were diagnosed shortly afterwards. These days, as I approach 40, I live with a certain amount of terror. What if I die and leave my kids the way my dad left me? I’m aware of how unreasonable of a fear that is – my father died because he was unable to get health insurance and, thus, was unable to care for himself as his kidney disease progressed. I have learned from that.

That doesn’t change the deep fear inside me.

I also live with the guilt that I may have passed this disease to one or both of my children. Was I selfish becoming a parent knowing the kids themselves could wind up with PKD? I was healthy when I had them. I had no idea what I would be feeling like as my kidneys grew and began to fail. Make no mistake; I adore my children, and the world is a better place with them in it. But that doesn’t make the guilt go away.

I worry about having access to healthcare. I worry about dialysis with kids still in school. I worry about something happening to me the way it did to my dad. I worry about something happening to my sister the way it did to our dad. I struggle with my body image as my kidneys grow and I look more and more pregnant. I fight with my expectations of what I think my body should be able to do, and what I am actually able to do. I fight against the idea that I am a sick person.

Despite ALL of this, I love my life. I love my family. I love my friends. I live a mundane, repetitive, fantastic, beautiful life of a mom, a wife, a sister, a friend, an artist, a woman.

I am not PKD. I am a person with PKD…

And I am so much more.

*****

I have to admire Cindy for her honesty here. She would be having these feelings whether or not she shared them with us, but the fact that she did may just make it easier for other PKD patients to speak about their own fears.

By the way, The American Kidney Fund’s next webinar, Advocating for a rare disease, is on Thursday, July 26, 2018 from 2:00 – 3:00 p.m. EDT. The speakers will be Angeles Herrera, Holly Bode, You can register at https://register.gotowebinar.com/register/7986767093922676227.

In other news, the SlowItDownCKD book series now includes SlowItDownCKD 2011, 2012, 2013, 2014, 2015, 2016, and 2017, all available from Amazon.com and B & N.com. I had contemplated changing the title of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to SlowItDownCKD 2010 but rejected the idea. I like that title; don’t you? Of course, expect SlowItDownCKD 2018 early next year. These books were written for those of you who have requested the blogs in print form for those family members and friends who are either not computer savvy or don’t have easy access to a computer. It’s my pleasure to comply with that request. Oh, I still have one desk copy each of the retired The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 & 2 if you’ve not received a free book from me before and would like one of them. Just respond with a comment so I know you were the first to ask.

Until next week,

Keep living your life!

Only One?

Loads of good things have been happening in my family lately, among them a couple of marriages. That, of course, brings new people into the family. There’s always that obligatory meet-the-new-in-laws dinner.  At one of these, a just added family member mentioned that she only had one kidney. Then she asked me what that means as far as Chronic Kidney Disease… and I didn’t know. Today’s blog is for her.

Let’s jump right in with this explanation from the U.S. Department of Health’s National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at https://www.niddk.nih.gov/health-information/kidney-disease/solitary-kidney.

When a person has only one kidney or one working kidney, this kidney is called a solitary kidney. People born with kidney dysplasia have both kidneys; however, one kidney does not function (top right). When a kidney is removed surgically due to disease or for donation, both the kidney and ureter are removed (bottom right).

Well that was pretty straight forward. I wondered if she should be taking any kind of special cautions. According to the National Center for Biotechnology Information of the U.S. National Library of Medicine, National Institutes of Health, PubMed at https://www.ncbi.nlm.nih.gov/pubmed/16985610,

Removal of one kidney leads to structural and functional changes by the remaining kidney, including increased filtration of the remaining glomeruli. These functional changes have generally been considered beneficial because they mitigate the reduction in the total glomerular filtration rate that would otherwise occur, but experimental evidence suggests that these changes may have an adverse effect on the remaining kidney.

That sounded great… until I got to ‘adverse effect.’ So, naturally, I wanted to know what they meant. The Kidney and Urology Foundation of America, Inc. at http://www.kidneyurology.org/Library/Kidney_Health/Solitary_Kidney.php told me what I wanted to know.

If having a single kidney does affect your health, the changes are likely to be so small and happen so slowly that you won’t notice them. Over long periods of time, however, these gradual changes may require specific measures or treatments. Changes that may result from a single kidney include the following:

  • High blood pressure. Kidneys help maintain a healthy blood pressure by regulating how much fluid flows through the bloodstream and by making a hormone called renin that works with other hormones to expand or contract blood vessels. Many people who lose or donate a kidney are found to have slightly higher blood pressure after several years.
  • Proteinuria. Excessive protein in the urine, a condition known as proteinuria, can be a sign of kidney damage. People are often found to have higher-than-normal levels of protein in their urine after they have lived with one kidney for several years.
  • Reduced GFR. The glomerular filtration rate (GFR) shows how efficiently your kidneys are removing wastes from your bloodstream. People have a reduced GFR if they have only one kidney.

In the nephron …, tiny blood vessels intertwine with urine-collecting tubes. Each kidney contains about 1 million nephrons.

You can have high blood pressure, proteinuria, and reduced GFR and still feel fine. As long as these conditions are under control, they will probably not affect your health or longevity. Schedule regular checkups with your doctor to monitor these conditions.

Wait a minute! Those are also the effects of Chronic Kidney Disease. And as you read on, you’ll see that the precautions are the same as those for someone who already has CKD.

What, then, is my new in-law supposed to do since she has a solitary kidney? I went to Medic8, a new site for me, at http://www.medic8.com/kidney-disorders/solitary-kidney.htm for the following suggestions.

Monitoring

Your doctor should monitor your kidney function by checking your blood pressure and testing your urine and blood once a year.

  • Normal blood pressure is considered to be 120/80 or lower. You have high blood pressure if it is over 140/90. People with kidney disease or one kidney should keep their blood pressure below 130/80. Controlling blood pressure is especially important because high blood pressure can damage kidneys.
  • Your doctor may use a strip of special paper dipped into a little cup of your urine to test for protein. The colour of the “dipstick” indicates the presence or absence of protein. A more sensitive test for proteinuria involves laboratory measurement and calculation of the protein-to-creatinine ratio. A high protein-to-creatinine ratio in urine (greater than 30 milligrams of albumin per 1 gram of creatinine) shows that kidneys are leaking protein that should be kept in the blood.
  • … scientists have discovered that they can estimate a person’s GFR based on the amount of creatinine in a small blood sample. The new GFR calculation uses the patient’s creatinine measurement along with weight, age, and values assigned for sex and race. …. If your GFR stays consistently below 60, you are considered to have chronic kidney disease.

Controlling Blood Pressure

If your blood pressure is above normal, you should work with your doctor to keep it below 130/80. Great care should be taken in selecting blood pressure medicines for people with a solitary kidney. Angiotensin-converting enzyme (ACE) inhibitors and angiotensin receptor blockers (ARBs) are two classes of blood pressure medicine that protect kidney function and reduce proteinuria. But these medicines may be harmful to someone with renal artery stenosis (RAS), which is the hardening of the arteries that enter the kidneys. Diuretics can help control blood pressure by removing excess fluid in the body. Controlling your blood pressure may require a combination of two or more medicines, plus changes in diet and activity level.

Eating Sensibly

Having a single kidney does not mean that you have to follow a special diet. You simply need to make healthy choices, including fruits, vegetables, grains, and low-fat dairy foods. Limit your daily salt (sodium) intake to 2,000 milligrams or less if you already have high blood pressure. Reading nutrition labels on packaged foods to learn how much sodium is in one serving and keeping a sodium diary can help. Limit alcohol and caffeine intake as well.

Avoid high-protein diets. Protein breaks down into the waste materials that the kidneys must remove, so excessive protein puts an extra burden on the kidneys. Eating moderate amounts of protein is still important for proper nutrition. A dietitian can help you find the right amount of protein in your diet.

Avoiding Injury

…. Having a solitary kidney should not automatically disqualify you from sports participation. Children should be encouraged to engage in some form of physical activity, even if contact sports are ruled out. Protective gear such as padded vests worn under a uniform can make limited contact sports like basketball or soccer safe. Doctors, parents, and patients should consider the risks of any activity and decide whether the benefits outweigh those risks.

I am happy to say I think our new relative is going to find this a comforting blog. I know I did.

Oh, talking about one. I have one desk copy of the now retired The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 left. Leave a comment if you’d like to have it. All I ask is that you not have received a free book from me before.

Until next week,

Keep living your life!

 

No Longer an Actor, Now I’m a Reviewer (Of Sorts)

Last month I received an email from Screen Media asking if I’d like to preview Chicken Soup for the Soul’s One Last Thing. It stars two actors I know about, “…Wendell Pierce (TV’s The Wire) and Jurnee Smollett-Bell (TV’s Underground) and is primarily set in Brooklyn.” Hmmm, two appealing actors AND it was set in Brooklyn. I still wasn’t sure so I emailed back asking if SlowItDownCKD was the intended recipient for this email. Once assured it was, I agreed. Hey, I’m always up for an adventure.

When I saw the movie, I understood. One story line in the movie deals with a kidney dysplasia patient’s need for a donor. That’s all I’ll say about the movie so I don’t ruin the story for you. In other words, you’ll get no spoiler alerts from me.

In addition to crying at the most poignant parts of the movie, my brain was working overtime. Granted the character suffered from a rare kidney disease, but so rare that I’d never heard of it? You can tell what’s coming, can’t you? If I hadn’t heard of it, have my readers? And that’s what I’ll be writing about today.

Okay now, let’s see what this rare kidney disease is. It made sense to me to go to one of the tried and true websites I usually go to for information. This is what The National Institute of Diabetes, Digestive, and Kidney Diseases, a part of the U.S. Department of Health and Human Services, at https://www.niddk.nih.gov/health-information/kidney-disease/children/kidney-dysplasia had to offer:

“Kidney dysplasia is a condition in which the internal structures of one or both of a fetus’ kidneys do not develop normally while in the womb. During normal development, two thin tubes of muscle called ureters grow into the kidneys and branch out to form a network of tiny structures called tubules. The tubules collect urine as the fetus grows in the womb. In kidney dysplasia, the tubules fail to branch out completely. Urine that would normally flow through the tubules has nowhere to go. Urine collects inside the affected kidney and forms fluid-filled sacs called cysts. The cysts replace normal kidney tissue and prevent the kidney from functioning.

Kidney dysplasia can affect one kidney or both kidneys. Babies with severe kidney dysplasia affecting both kidneys generally do not survive birth. Those who do survive may need the following early in life:

  • blood-filtering treatments called dialysis
  • a kidney transplant

Children with dysplasia in only one kidney have normal kidney function if the other kidney is unaffected. Those with mild dysplasia of both kidneys may not need dialysis or a kidney transplant for several years.

Kidney dysplasia is also called renal dysplasia or multicystic dysplastic kidney.”

They also offered some clarifying diagrams.

So now we know what it is, but what causes it? I went to MedicineNet at https://www.medicinenet.com/kidney_dysplasia/article.htm#what_is_kidney_dysplasia for the answer to this question.

“Kidney dysplasia may be caused by the mother’s exposure to certain drugs or by genetic factors. Pregnant women should talk with their health care providers before taking any medicine during their pregnancy. Drugs that may cause kidney dysplasia include prescription medicines, such as drugs to treat seizures and blood pressure medicines called angiotensin-converting enzyme (ACE) inhibitors and angiotensin receptor blockers (ARBs). A mother’s use of illegal drugs-such as cocaine-can also cause kidney dysplasia in her unborn child.

Kidney dysplasia can also have genetic causes. The disorder appears to be an autosomal dominant trait, which means one parent may pass the trait to a child. When kidney dysplasia is discovered in a child, an ultrasound examination may reveal the condition in one of the parents.

Several genetic syndromes that affect other body systems may include kidney dysplasia as one part of the syndrome. A syndrome is a group of symptoms or conditions that may seem unrelated but are thought to have the same cause-usually a genetic cause. A baby with kidney dysplasia might also have problems of the digestive tract, nervous system, heart and blood vessels, muscles and skeleton, or other parts of the urinary tract.

A baby with kidney dysplasia might have other urinary problems that affect the normal kidney. On the left, urine is blocked from draining out of the kidney. On the right, urine flows backward from the bladder into the ureter and kidney, a condition called reflux.

(Me, here: You’ll be able to figure out which was the cause of Jurnee Smollett-Belle’s character once you see the movie.)

Problems of the urinary tract that lead to kidney dysplasia might also affect the normal kidney. For example, one urinary birth defect causes blockage at the point where urine normally drains from the kidney into the ureter. Another birth defect causes urine to flow from the bladder back up the ureter, sometimes all the way to the kidney. This condition is called reflux. Over time, if these problems are not corrected, they can damage the one working kidney and lead to total kidney failure.”

I’m thankful this is a rare disease, but wondered just how rare it was. Back to NIKKD at the same URL as before:

“Scientists estimate that kidney dysplasia affects about one in 4,000 babies…. This estimate may be low because some people with kidney dysplasia are never diagnosed with the condition.”

I’m not a numbers person, but that seems like a lot of babies.

Now, the biggie. What can be done before the need for dialysis or transplant rears its head? I went directly to Urology Care Foundation at http://www.urologyhealth.org/urologic-conditions/kidney-(renal)-dysplasia-and-cystic-disease/printable-version since the kidneys are part of your urologic system.

  • “Treatment may only include symptom management.
  • Monitoring should include blood pressure checks, kidney function tests, and urine testing for protein.
  • Periodic ultrasound can be used to make sure the other kidney continues to grow normally and no other problems develop.
  • Antibiotics may be needed for urinary tract infections.
  • The kidney should be removed only if it causes pain or high blood pressure, or ultrasound is abnormal.”

The AAKP Conference I wrote about last week opened my eyes to how much I don’t know about other kidney diseases and those that might affect CKD. The result is that I’ve asked quite a few people and organizations to guest blog about those areas in which they are experts. Expect to see these guest blogs throughout the summer.

Until next week,

Keep living your life!

Coming Home

I’m not a joiner. I’ve never been one. That’s why I was so surprised that I joined the American Association of Kidney Patients… and even more surprised to find myself attending this year’s conference in Tampa Bay, Florida. Readers had been suggesting I do so for years, but I’m not a joiner. Let’s change that; I wasn’t a joiner. The AAKP conference made the difference.

What’s that you ask? Of course, you need to know what they are. This is from their website at https://aakp.org/,

THE INDEPENDENT VOICE OF KIDNEY PATIENTS SINCE 1969™

The American Association of Kidney Patients is dedicated to improving the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.

Education

The American Association of Kidney Patients (AAKP) is recognized as the leader for patient-centered education – continually developing high quality, professionally written, edited and reviewed educational pieces covering every level of kidney disease.

Advocacy

For nearly 50 years, AAKP has been the patient voice – advocating for improved access to high-quality health care through regulatory and legislative reform at the federal level. The Association’s work has improved long term outcomes in both quality of health and the ability for patients and family members affected by kidney disease to lead a more productive and meaningful life.

Community

AAKP is leading the effort to bring kidney patients together to promote community, conversations and to seek out services that help maximize patients’ everyday lives.

An IRS registered, Sec. 501(C)(3) organization, AAKP is governed by a Board of Directors. The current board is comprised of dialysis patients, chronic kidney disease patients, [Me here: You did notice ‘chronic kidney disease patients,’ right?] transplant recipients, health care professionals and members of the public concerned with kidney disease. The board and membership are serviced by a staff of five employees under the direction of Diana Clynes, Interim Executive Director, at the AAKP National Office located in Tampa, Florida.”

What’s not mentioned here is that the organization was started by only six patients. I find that astounding, but I’ll let them explain their history:

Founded by Patients for Patients

King County Hospital, New York

The American Association of Kidney Patients (AAKP) has a rich history in patient advocacy and kidney disease education. AAKP started in 1969 with six dialysis patients at King County Hospital in Brooklyn, New York. They wanted to form an organization that would elevate the kidney patient voice in national health care arena, provide patients with educational resources to improve their lives and give kidney patients and their family members a sense of community. They met twice a week in the hospital ward and while hooked up to primitive dialysis machines for 12 to 18 hours at a time they brainstormed, researched and eventually formed AAKP.

The group originally called themselves NAPH (National Association of Patients on Hemodialysis, which later changed to AAKP). AAKP joined forces with other patient groups to fight for the enactment of the Medicare End-Stage Renal Disease (ESRD) Program, testifying before congressional committees, seeking public support and creating a newsletter (the forerunner of today’s AAKP RENALIFE) to keep everyone informed. This effort was crowned with success in 1972 when Congress enacted the program that continues to provide Medicare funding for dialysis and kidney transplantation.

After winning the initial and critical battle for the Medicare ESRD Program, AAKP turned its attention to other important issues — the need to establish a secure national organization to preserve the visibility and influence of patients with Congress and to develop national, educational and supportive programs.

Today & Beyond

AAKP has grown into a nationally recognized patient organization that reaches over 1 million people yearly. It remains dedicated to providing patients with the education and knowledge necessary to ensure quality of life and quality of health.”

This former non-joiner has found her association. I originally avoided the conferences because I thought they would be focused only on dialysis and transplant patients. Boy, was I ever wrong. Here are some of the outbreak (small group) sessions that dealt with other aspects of kidney disease:

Social Media (You’re right: I signed up for that one right away since I identify as a CKD awareness advocate.)

Dental Health

How Kidney Disease Impacts Family Members

Managing the Early Stage of CKD

Understanding Clinical Trials

Treatment Options

Staying Active

Veterans Administration

Caregiver’s Corner

Living Well with Kidney Disease

Avoid Infections

Of course, there were many outbreak sessions for dialysis and transplant patients as well. And there were two opportunities to lunch with experts. That’s where I tentatively learned about governmental aspects of our disease. There were opportunities to learn about nutrition, medications, working, and coping. I’ve just mentioned a few of the 50 different topics discussed.

The general sessions, the ones everyone attended, informed us of what the government’s national policy had to do with kidney disease, legislation, nutrition, patient centered care, and innovation in care (Keep an eye out for Third Kidney, Inc.’s August guest blog.).

I have not covered even half of what was offered during the conference. Did I mention renal friendly food was available and you could dialyze near the hotel if need be? The exhibitors went beyond friendly and explaining their products to being interested in who you were and why you were there. This was the most welcoming conference I’d been to in decades.

AAKP President Paul Conway summed up my feelings about the conference when he was interviewed by The Tampa Bay Times on the last day of the conference,

“This meeting is a way for us to bring patients together and educate them on trends that could affect their own health.”

I met so many others who have kidney disease and so many others who advocate for different types of kidney disease and patients’ rights. I was educated about so many areas, especially those I previously had known nothing about, for example, legislation. It was like coming home. Would I attend again? You bet’cha. Would I urge you to attend? At the risk of being redundant, you bet’cha.

I was so excited about AAKP that I almost didn’t leave myself enough space to tell you about yet another freebie. The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 is no longer in print since it has been divided into SlowItDownCKD 2011 and SlowItDownCKD 2012. But I still have a desk copy. Let me know if you’d like it. My only restriction is that you have not received a free book from me before.

Until next week,

Keep living your life!

Let Your Voice Be Heard

Someone on a Facebook Chronic Kidney Disease Support Group Page asked how we can make others more aware of what CKD patients want. I’ve been tweeting (exchanging remarks on Twitter) with those who could answer this question just recently. How perfect was that?

The first thing the American Society of Nephrology requested is that those of you who are familiar with Twitter, or are willing to become familiar with this social media, join the monthly #AskASN twitter chats. To join Twitter you simply go to Twitter.com and sign yourself up, no special expertise necessary. That pound sign, or as it’s commonly known now – hashtag, before the words signify that this is a person or group with a Twitter account. What comes after the hashtag is your handle, the name you choose for yourself. Mine is – naturally – #SlowItDownCKD. You can search for me on Twitter.

#AskASN is one of the hashtags of the American Society of Nephrology, the ASN which you’ve often seen me quote. Yes, they are respected. Yes, they are doctors. And, yes, they do want to know what we as kidney disease patients want them to know about our lives as their patients. Big hint: their next Twitter Chat will be in late July.

This year’s May 28th blog was about KidneyX, the same topic as June’s Twitter Chat. Here’s a little reminder of what KidneyX stands for:

“Principles

  • Patient-Centered Ensure all product development is patient-centered
  • Urgent Create a sense of urgency to meet the needs of people with kidney diseases
  • Achievable Ground in scientifically-driven technology development
  • Catalytic Reduce regulatory and financial risks to catalyze investment in kidney space
  • Collaborative Foster multidisciplinary collaboration including innovators throughout science and technology, the business community, patients, care partners, and other stakeholders
  • Additive Address barriers to innovation public/private sectors do not otherwise
  • Sustainable Invest in a diverse portfolio to balance risk and sustain KidneyX”

Did you notice that first principle: patient-centered? Or the fifth one: collaborative? We are included in that; we’re the patients.

IDEA Lab is one of the U.S. Department of Health and Human Services’ partners. This is how they define themselves:

“We test and validate solutions to solve challenging problems in the delivery of health and human services.”

And this is what they had to say during the KidneyX Twitter Chat:

HHS IDEA Lab‏Verified account @HHSIDEALabJun 19

Absolutely. Patients are innovators and we need to recognize that #askASN#KidneyX

Patients. They want to hear from us, patients.

Before reproducing a small part of the @AskASN KidneyX Twitter Chat, I want to introduce the players.

Kevin J. Fowler (@gratefull080504) is a patient who has had a preemptive kidney transplant and is highly involved in the patient voice being heard.

Tejas Patel (@GenNextMD) is a nephrologist with a large social media presence who advocates “for halting the progression of ckd so no dialysis or transplant [is necessary].”

James Myers (@kidneystories) is a fairly recent transplant with a strong advocacy for transplant patients.

I’m me; you already know me.

Now, the excerpt:

Thank you @GenNextMD Me too! #AskASNhttps://twitter.com/GenNextMD/status/1009245134964318209 …

Kevin J. Fowler added,

  • Tejas Patel @GenNextMD

Replying to @kidneystories

I am advocating for halting the progression of ckd so no dialysis or transplant #askasn #moonshot

Replying to @gratefull080504@GenNextMD

@GenNextMD That’s what those of us pre-dialysis want, too. The question is how do we do that? As a lay person, I’m at a loss here.

Replying to @Slowitdownckd@gratefull080504

Major undertaking by medical community, organizations (ASN, AAKP, NKF, RPA) and implementation of breakthrough therapies keeping patient central. Engaging all stakeholders will help prioritize what works for patients. Dialogue via formal & social media helps us understand better.

Replying to @GenNextMD@Slowitdownckd@gratefull080504

We recently had patient editorial in @CJASN by @gratefull080504 and interview https://www.kidneynews.org/kidney-news/features/patient-engagement … Lot of work needs to be done

I read the article. I think you should, too. Kevin makes the point that patient voices need to be heard and the nephrologist who was interviewed with him, Dr. Eleanor D. Lederer, agrees.

From reading my blog alone, you’re already familiar with the oft quoted American Society of Nephrology (ASN), American Association of Kidney Patients (AAKP) which was the subject of June 25th blog, and the National Kidney Foundation (NKF), a staple in the blog. But what is the RPA?

Let’s find out. It turns out that this is the Renal Physicians Association. Their website is at https://www.renalmd.org/. If you go there, you’ll notice four different choices. One of them is Advocacy. That’s the one I clicked. Keep in mind that this site is for physicians.

Become An Advocate for Excellence in Nephrology Practice

It is not only your right but also your obligation to let elected officials and policy makers know how you feel about important issues. It is your responsibility to speak out on matters that affect you directly or no one else will. RPA has developed pathways to allow you to do this.

Recognizing that nephrologists and their practice teams have limited time, an easy way to get involved in federal advocacy is by joining the RPA Political Action Committee (PAC) and Nephrology Coverage Advocacy Program (NCAP).

Take Action Nationally!

RPA’s Legislative Action Center (LAC) facilitates the important communication between RPA members and their members of Congress as well as representatives in their state legislatures. The LAC allows RPA members to track the progress of and search for all current legislation being considered by Congress.”

Our doctors are being asked to speak with the government on our behalf. But how will they know what we want or need, you ask. Easy enough: you tell them when you see them. You have regular appointments; that’s when you can talk with them about legislation you feel is necessary.

I never knew how much my opinion is wanted. I never knew how much YOUR opinion is wanted. Now we all know, so how about speaking out, raising your voice, and advocating for yourself. It’s not that scary if you start by just speaking with your doctor.  Although, I’ll be looking for you on ASN’s #askASN Twitter Chat in late July.

Until next week,

Keep living your life!

Sorry Spiderman, That was Webinars not Webshooters

So much has been going on in my world lately that it was hard to choose what to write about today. In addition to my family, there’s the experience of my first American Association of Kidney Patients Conference, PKD, KidneyX and the list goes on. It was hard to choose, that is, until the American Kidney Fund sent me the following information. They explain who they are, what they do, and why they hold their free monthly educational seminars. Good timing here since the next webinar is this Friday. I’ll let them take over for a while and write some more once they’re done.

Oh, wait. First we need to know what a webinar is. My favorite online dictionary, Merriam-Webster, at https://www.merriam-webster.com/dictionary/webinar defines this in the following way:

“a live online educational presentation during which participating viewers can submit questions and comments”

That means it’s real time; you have to be online to participate. Don’t worry if the time doesn’t work for you because AKF has former webinars on their websites. You just won’t be able to ask your own questions, although you will be able to hear the questions others have asked during the webinar and the answers they received. Okay, now we turn this section of the blog over to The American Kidney Fund.

“The American Kidney Fund (AKF) is a non-profit organization dedicated to helping people fight kidney disease and lead healthier lives.  Living with chronic kidney disease (CKD) or kidney failure is incredibly taxing, and can put strain on all elements of a person’s life. And although doctors are available for patients to ask questions about their disease, many kidney patients do not know what they should ask, and are left needing answers even after leaving a doctor’s appointment.

AKF believes every patient and caregiver has the right to understand what is going on with their health, or the health of their loved one, and how to best manage it. That is where we come in.

The American Kidney Fund hosts free, monthly, educational webinars meant for patients and caregivers. Each webinar explores a different topic relevant to living well with kidney disease. Since the webinar program’s launch in 2016, AKF has hosted over 27 webinars on many topics including nutrition, employment, insurance, transplant, exercise, heart disease, advocacy, pregnancy, mental health, and more.

Webinar speakers are carefully chosen based on their knowledge, and ability to connect with a patient audience. This ensures we deliver the highest quality of information in the best way. Some speakers are kidney patients or kidney donors themselves.  The webinars are delivered from a variety of perspectives so that the advice given is both relatable and reliable.

AKF aims to take complex topics and simplify the content without taking away from the quality of information.  In an effort to be inclusive of non-English speakers, AKF has hosted a webinar entirely in Spanish on preventing and treating kidney disease, and is in the process of translating even more webinars into Spanish.

One of the highlights of the American Kidney Fund webinars is the live Q&A session held during the last 15-20 minutes of each presentation, when the audience can ask their questions in real time and receive an immediate answer from our speaker. This creates a unique space for our attendees to interact anonymously with an expert in a judgement-free zone. We understand the time-demands of being a kidney patient or caregiver, which is why all our webinars, along with the PowerPoint slides, are also uploaded to the AKF website for on-demand viewing.

Our next webinar is on Friday, June 22 from 1-2pm (EST) and will discuss why phosphorus is an important nutrient for kidney patients to consider, and the best ways to manage phosphorus through diet and medicine.  Carolyn Feibig, the dietitian and speaker for this webinar is exceptionally knowledgeable and enthusiastic about her field. If you have questions about how to manage a CKD-friendly diet, this is your opportunity to learn more and to ask your questions.

After each webinar we ask for feedback and suggestions from our audience about future webinars.  We invite you to register now, and then share which topics you would like to hear about next. We hope you will use our webinars as a tool to live the healthiest life possible with kidney disease.

American Kidney Fund www.kidneyfund.org/webinars

I looked at some of their past webinar topics and was impressed with the variety.

My office is abuzz. SlowItDownCKD 2013, both digital and print, is available on Amazon. Give it a few weeks before it appears on B&N.com. I’m excited because I vowed to separate the unwieldy, small print, indexless The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 into two separate books with a SlowItDownCKD title, index, and larger print just as I’d done with The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 (which is no longer available since it is now SlowItDownCKD 2011 and SlowItDownCKD 2012). That’s half way done now, boys and girls… I mean readers.

Here’s something a bit unusual: I have a request from a reader who has the rare kidney disease Calyceal Diverticulum. Rather than asking me to write about it, she’s looking for others with the same disease. Do we have any readers here with this disease? If so, we could make the blog a safe place to connect. Or you could email me and I’d pass on your information to her. Alternately, with her permission, I could pass her information to you. I can understand her need to communicate with others with the same disease, so please do let me know if you’d like to communicate with her.

And last, but not least, and I have to admit brain fog has me here, so bear with me if you’ve read this before. In digging through the morass of my desk, (I have been traveling a lot lately.) I uncovered a beta copy of SlowItDownCKD 2017. That means it has all the content, but I didn’t like the formatting so I re-did it. Would you like it? If so, just be the first one to contact me to let me know. Oh, one restriction: only those who haven’t received a free book from me before, please. I’d like to share the CKD information with as many people as possible.

Until next week,

Keep living your life!