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! 

Almost the End of National Kidney Month 

Today we have the fifth National Kidney Month blog. You know, it’s also National Women’s Month. What better way to celebrate both than to write about women in nephrology?  I had intended to complete multiple searches for this information, but it looks like Martín-Gómez MA, García Agudo R, and Arenas Jiménez MD beat me to it with their paper El papel de la mujer a lo largo de la historia de la Nefrología which appeared in Nefrologia. 2019;39:15–17.  

In English rather than its original Spanish, the title is The role of women throughout the history of Nephrology. As a woman and a Chronic Kidney Disease writer, I owe them a huge debt of gratitude. Here are the parts of their paper pertaining to individual women in nephrology: 

“Dr Josephine Briggs, responsible for research at the US National Institutes of Health in the 1990s on the renin-angiotensin system, diabetic nephropathy, blood pressure and the effect of antioxidants in kidney disease. 

Dr Renée Habib (France), a pioneer of nephropathology [Gail here: that means disease or damage of the kidneys.] in Europe. She worked with the founders of the ISN to establish nephrology as a speciality. 

Dr Vidya N Acharya, the first female nephrologist in India inspiring the study of kidney diseases, dedicating her research to urinary infections and heading a Nephrology department in Mumbai. 

Dr Hai Yan Wang, head of department and professor of Nephrology at the Peking University First Hospital since 1983, president of the Chinese Society of Nephrology and editor of Chinese and international nephrology journals. 

Dr Mona Al-Rukhaimi, co-president of the ISN and leader of the working group on the KDIGO guidelines in the Middle East, as well as a participant in the Declaration of Istanbul on Organ Trafficking and Transplant Tourism. 

Dr Saraladevi Naicker, who created the first training programme [sic]for nephrologists in Africa and the Kidney Transplant Unit at Addington Hospital. 

Dr Batya Kristal, the first woman to lead a Nephrology department in Israel and founder of Israel’s National Kidney Foundation. She conducts her current research in the field of oxidative stress and inflammation. 

Dr Priscilla Kincaid-Smith, head of Nephrology at Melbourne Hospital, where she promoted the relationship between hypertension and the kidney and analgesic nephropathy. The first and only female president of the ISN, she empowered many other women, including the nephrologist Judy Whitworth, chair of the World Health Organization committee…. 

Dr M. Teresa D’Ocón Asensi, the first female head of the Nephrology Department at the Hospital San Carlos in Madrid since it was founded in 1962 and designer of a conservative prosthesis of the peritoneal catheter tract based on urological plugs. She was the only female member of the board of directors of the SEN (Sociedad Española de Nefrología [Spanish Society of Nephrology]) since its formation in 1964, until 1976.  

Women were not represented again in the management of the Spanish society until 1987, with the figure of Dr M. Dolores Jarillo Ibáñez (1987–1993)…. 

Dr María Teresa González, creator of the first nephrology and diabetes clinic at the Hospital de Bellvitge, in 1978. 

Dr Dolores Prats, who promoted peritoneal dialysis and studies on permeability and duration of the peritoneal membrane at the Hospital Clínico in Madrid. She succeeded her female predecessor as head of department, following said predecessor’s death in 1981. 

Dr Ana Gonzalo Fondona, who performed the first studies on complement activation in glomerulopathies at the Hospital de Bellvitge…. 

Isabel Entero, creator of the Fundación Renal Íñigo Álvarez de Toledo, founder of ALCER (Asociación para la Lucha Contra las Enfermedades de Riñón [Spanish Association for the Fight Against Kidney Diseases]) in 1976 and participant in the Transplant Act in 1979 

Dr Blanca Miranda, who replaced Isabel Entero as director of said Foundation from 1982, formed part of the drafting committee of the journal Nefrología from 1995 and coordinator of the Spanish National Transplant Organisation between 1996 and 2004. 

The journal Nefrología, which was created in 1981 by Dr Luis Hernando, did not include women on the editorial board until 1989: Dr Nieves Gallego, Dr Emma Huarte and Dr Dolores Jarillo….” 

You’ll notice the paper was printed in the beginning of 2019, so I decided to add more current women in nephrology. 

Dr. Vanessa Grubb first approached me when she was considering writing a blog herself. I believe she’s an important woman nephrologist since she has a special interest in the experiences of Black kidney patients. Here is what University of California’s Department of Medicine’s Center for Vulnerable Populations lists for her: 

“Dr. Vanessa Grubbs is an Associate Professor in the Division of Nephrology at UCSF and has maintained a clinical practice and research program at Zuckerberg San Francisco General Hospital since 2009. Her research focuses on palliative care for patients with end-stage kidney disease. She is among the 2017 cohort for the Cambia Health Foundation Sojourns Scholar Leadership Program, an initiative designed to identify, cultivate and advance the next generation of palliative care leaders; and the 2018 California Health Care Foundation’s Health Care Leadership Program. 
 
Her clinical and research work fuel her passion for creative writing. Her first book, HUNDREDS OF INTERLACED FINGERS: A Kidney Doctor’s Search for the Perfect Match, was released June 2017 from Harper Collins Publishers, Amistad division and is now in paperback.” 

I think Dr. Li-li Hsiao should also be included in today’s blog since she has a special interest in the Asian community and their experiences with kidney disease. The following is from the Boston Taiwanese Biotechnological Association:  

“…. She is the Director of Asian Renal Clinic at BWH; the co-program director and Co-PI of Harvard Summer Research Program in Kidney Medicine. She is recently appointed as the Director of Global Kidney Health Innovation Center. Dr Hsiao’s areas of research include cardiovascular complications in patients with chronic kidney disease; one of her work published in Circulation in 2012 has been ranked at the top 1% most cited article in the Clinical Medicine since 2013. Dr. Hsiao has received numerous awards for her outstanding clinical work, teaching and mentoring of students including Starfish Award recognizing her effective clinical care, and the prestigious Clifford Barger Mentor Award at HMS. Dr. Hsiao is the founder of Kidney Disease Screening and Awareness Program (KDSAP) at Harvard College where she has served as the official advisor. KDSAP has expanded beyond Harvard campus. Dr. Hsiao served in the admission committee of HMS; a committee member of Post Graduate Education and the board of advisor of American Society of Nephrology (ASN). She was Co-Chair for the ‘Professional Development Seminar’ course during the ASN week, and currently, she is the past-president of WIN (Women In Neprology [sic]).   

I don’t believe we, as women, will continue to be underrepresented in the nephrology community for very much longer. 

Until next week, 

Keep living your life! 

What’s New?

Here we are in the fourth week of National Kidney Month. I caught myself wondering if I were up to date on anything and everything new in the world of kidney disease. I receive emails every day about this or that happening in the kidney community, but how many of them refer to what’s new? I decided to find out. 

I started with a general search and found quite a bit. Let’s start with this paper which was published on January 5th of this year. Since I’ve just had an expensive new crown made, this one on ScienceDaily caught my eye: 

“Lead author Dr Praveen Sharma, from the Periodontal Research Group at the University of Birmingham’s School of Dentistry, said: ‘This is the first paper to quantify the causal effect of periodontitis on kidney function and vice-versa as well as the first to elucidate the pathways involved. 

It showed that even a modest reduction in gum inflammation can benefit renal function. Given the relative ease of achieving a 10% reduction in gum inflammation, through simple measures like correct brushing techniques and cleaning between the teeth, these results are very interesting.’ ” 

Reminder: periodontis is gum infection which can become so serious that you lose teeth and possibly even affects the bone under your teeth. The ‘dont’ part of the word means teeth, while ‘peri’ means around. By this time in reading the blog, we can figure out that ‘itis’ means inflammation. Keep up the brushing and flossing, folks. This may help you save your kidneys. 

Just a week later, on January 12th, EuerkAlert! announced: 

“While investigating the underlying causes of a rare skin disorder, a researcher at Massachusetts General Hospital (MGH) discovered a previously unknown mechanism in the kidneys that is important for regulating levels of magnesium and calcium in the blood. 

The discovery, described in the journal Cell Reports, highlights the role of a previously little-studied gene called KCTD1. The gene directs production of a protein that regulates the kidney’s ability to reabsorb magnesium and calcium from urine and return it to the bloodstream.” 

According to the U.S. Department of Health and Human Service’s National Institutes of Health’s Office of Dietary Supplements,  

“Magnesium is a nutrient that the body needs to stay healthy. Magnesium is important for many processes in the body, including regulating muscle and nerve function, blood sugar levels, and blood pressure and making protein, bone, and DNA.” 

According to the same agency

“The body needs calcium to maintain strong bones and to carry out many important functions. Almost all calcium is stored in bones and teeth, where it supports their structure and hardness. 

The body also needs calcium for muscles to move and for nerves to carry messages between the brain and everybody part. In addition, calcium is used to help blood vessels move blood throughout the body and to help release hormones and enzymes that affect almost every function in the human body.” 

I remember being flabbergasted upon discovering that the kidneys produce glucose. Can you imagine how my mind is reeling to learn that it also regulates the levels of magnesium and calcium in the blood? Maybe instead of telling me to drink my milk for calcium, my mom should have been telling me to keep an eye on my kidney function… not that we even knew what the kidneys were back then. [By we, I mean my mom and me.] 

But wait, there’s more. [Why do I feel like a 2 a.m. television ad?] Many important discoveries started as experiments with fruit flies. Hopefully, this one announced on January 26th is another of those: 

“In a new paper published in the journal Molecules, alum Cassandra Millet-Boureima (MSc 19) and Chiara Gamberi, affiliate assistant professor of biology, write that melatonin was found to reduce cysts in the renal tubules of fruit flies. These tubules are also found in more complex mammals, including humans, where they are called nephrons. This study, which builds on previous studies by Millet-Boureima and Gamberi, was co-authored by Roman Rozencwaig and Felix Polyak of BH Bioscience in Montreal. 

The researchers hope that their findings can be applied to treating people suffering from autosomal dominant polycystic kidney disease. ADPKD is a genetic chronic and progressive disease characterized by the growth of dozens of cysts in the nephrons. It is incurable and affects approximately 12.5 million worldwide.” 

Thank you to Medical Dialogues for this information. You may need a reminder about ADPKD, so here it is from PDK Foundation

“Autosomal dominant polycystic kidney disease (ADPKD) is one of the most common, life-threatening genetic diseases. In ADPKD, fluid-filled cysts develop and enlarge in both kidneys, eventually leading to kidney failure.” 

May as well define melatonin, too, don’t you think? My favorite dictionary helped us out here: 

“a vertebrate hormone that is derived from serotonin, is secreted by the pineal gland especially in response to darkness, and has been linked to the regulation of circadian rhythms.” 

We are vertebrates, meaning we have a backbone. The pineal gland is sometimes called the third eye, which makes sense now since it responds to darkness, just as our eyes do. 

There are a few more just this year alone, but I think we have room for just one more in today’s blog. 

“Oxygen is essential for human life, but within the body, certain biological environmental conditions can transform oxygen into aggressively reactive molecules called reactive oxygen species (ROS), which can damage DNA, RNA, and proteins. Normally, the body relies on molecules called antioxidants to convert ROS into less dangerous chemical species through a process called reduction. But unhealthy lifestyles, various diseases, stress, and aging can all contribute to an imbalance between the production of ROS and the body’s ability to reduce and eliminate them. The resulting excessive levels of ROS cause ‘oxidative stress,’ which can disrupt normal cellular functions and increase the risk of diseases like cancer, neurodegeneration, kidney dysfunction, and others, which are all accompanied by severe inflammation. 

Since oxidative stress is associated with various serious diseases, its detection within living organs offers a route to early diagnosis and preventive treatment, and is, thus, a matter of considerable interest to scientists working in the field of biomedicine. Recent international collaboration between the Japanese National Institutes for Quantum and Radiological Science and Technology (QST), Bulgarian Academy of Sciences, and Sofia University St. Kliment Ohridski in Bulgaria led to a promising technology for this purpose: a novel quantum sensor. Their work is published in the scientific journal Analytical Chemistry2021.” 

This was from their January 29th press release. Here we have another valuable theory of inquiry. 

My head is swimming. There’s so much new research re keeping our kidneys healthy. 

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! 


What’s That Sound I Hear?

Ever since I had the surgery that removed part of my pancreas, my gall bladder, and my spleen while saving my life, I’ve had a superabundance of flatulence and belching. Remaining delighted that I’m alive, I’m still, well, embarrassed by this. I called the surgeon to see if this were normal. He hadn’t prescribed any long-term medication, so I think he was a bit surprised at my question. His answer was no. 

Hmmm, maybe it was another medication since medication can be the source of both belching and flatulence. I called all my other doctors (and there were plenty). Nope, no one had prescribed a medication that would cause this. I’m fairly careful with my diet, so what could be the cause? 

Ah, there I am starting in the middle again. Let’s go back to what each of these terms is. 

Scotland’s National Health Service Inform explains what flatulence is: 

“Flatulence is passing gas from the digestive system out of the back passage. [Gail here: I love how delicately that’s phrased.] It’s more commonly known as ‘passing wind,’ or ‘farting’. 

Farting is often laughed about, but excessive flatulence can be embarrassing and make you feel uncomfortable around others. However, it can usually be controlled with changes to your diet and lifestyle. 

Flatulence is a normal biological process and is something everyone experiences regularly. Some people pass wind only a few times a day, others a lot more, but the average is said to be about 5 to 15 times a day.” 

While I like how easily I understood the definition, I wanted a little bit more and to find out about belching, too. Fortis Memorial Research Institute helped here and even threw in a bit about bloating – which seems to go along with belching and flatulence. It also explained what the pain you might experience with these three is: 

“Belching is a normal process and results from swallowed air accumulating in the stomach. The [sic] can be subsequently passed as rectal gas (flatus) also. 

Bloating is the subjective feeling that the abdomen is full but does not necessarily mean that the abdomen is enlarged. 

Flatulence refers to the passage of rectal gas. The gas is generally a combination of swallowed air and gas produced by the action of colon bacteria on undigested food. 

Gas accumulation can lead to pain which could seem like gallbladder pain or pain that can radiate up to the chest and seem like cardiac pain.” 

This was more informative, but I still wanted to find out more about this subject. (I guess I’m just never satisfied!). The MayoClinic provided me with that: 

“Flatulence: Gas buildup in the intestines 

Gas in the small intestine or colon is typically caused by the digestion or fermentation of undigested food by bacteria found in the bowel. Gas can also form when your digestive system doesn’t completely break down certain components in foods, such as gluten, found in most grains, or the sugar in dairy products and fruit. 

Other sources of intestinal gas may include: 

Food residue in your colon 

A change in the bacteria in the small intestine 

Poor absorption of carbohydrates, which can upset the balance of helpful bacteria in your digestive system 

Constipation, since the longer food waste remains in your colon, the more time it has to ferment 

A digestive disorder, such as lactose or fructose intolerance or celiac disease” 

There must be a way to cut down on belching and flatulence, I thought. Even if it’s normal, maybe it doesn’t have to happen so very often. So, I turned to my old buddy, Everyday Health to see if I could find some of the causative behaviors: 

“Eating high-fiber foods like beans, legumes, fruits, vegetables, and whole grains 

Drinking carbonated beverages 

Chewing gum 

Eating too quickly or talking while chewing, which results in swallowing more air 

Drinking through a straw 

Consuming artificial sweeteners 

Chronic intestinal diseases like diverticulitis or inflammatory bowel disease 

Food intolerances like celiac disease or lactose intolerance 

Bacterial overgrowth in the small bowel” 

That sounds easy enough. Yet, something was missing for me. I’d had cancer and still have chronic kidney disease. Is there some kind of connection? I found none with cancer, but Kidney Health Australia did make the connection between chronic kidney disease, and belching, bloating, and flatulence. 

“Reduced kidney function can lead to bowel problems such as constipation and diarrhoea. This can cause stomach discomfort including pain, bloating, gas and nausea. A renal dietitian or renal nurse may be able to suggest how to safely increase the fibre in your diet. Gentle exercise such as walking can also help relieve discomfort. Medications can also provide relief.” 

It’s the gas you produce that causes bloating (sometimes), belching, and flatulence. Remember that the Mayo Clinic cited constipation can contribute to these. Now we find that “reduced kidney function” can lead to constipation. 

That’s what ckd is: a progression in the decline of your kidney function for at least three months. 

Your flatulence, bloating, and/or belching may also be a complication of another problem. Check in with your medical team. You have to remember that I am not a doctor and have never claimed to be one.  

Healthline suggests the following conditions may be the cause: 

“If your diet doesn’t contain a large amount of carbohydrates or sugars, and you don’t swallow excessive air, your excessive flatulence may be due to a medical condition. 

Potential conditions underlying flatulence range from temporary conditions to digestive problems. Some of these conditions include: 

constipation 

gastroenteritis 

food intolerances, such as lactose intolerance 

irritable bowel syndrome (IBS) 

Crohn’s disease 

celiac disease 

diabetes 

eating disorders 

ulcerative colitis 

dumping syndrome 

gastroesophageal reflux disease (GERD) 

autoimmune pancreatitis 

peptic ulcers” 

Uh-oh, did you notice “diabetes” in the list above? That’s the second most prevalent cause of CKD and vice-versa. 

Hopefully, today’s blog has told you everything you always wanted to know about ckd & flatulence, belching, and bloating, but were afraid to ask (with apologies to Woody Allen). 

Until next week, 

Keep living your life! 

It’s Not Just Scaly Patches

Did I ever mention that I have latent psoriasis? Or that it has something to do with Chronic Kidney Disease? Hmmm, well maybe it’s time… not that most people ever want to admit they have unsightly psoriasis. 

I realize not everyone knows what that is, so we’ll start with a definition from the Mayo Clinic

“Psoriasis is a skin disease that causes red, itchy scaly patches, most commonly on the knees, elbows, trunk and scalp. 

Psoriasis is a common, long-term (chronic) disease with no cure. It tends to go through cycles, flaring for a few weeks or months, then subsiding for a while or going into remission. Treatments are available to help you manage symptoms. And you can incorporate lifestyle habits and coping strategies to help you live better with psoriasis.” 

Now you can see why people might be lax to mention they have psoriasis. It almost appears as if you hadn’t been taking care of your personal hygiene, and no one enjoys looking at those sores. My father had it in large, constant patches, but I grew up seeing it on him and never questioned what it was or how he got it. Maybe that’s why I’m so open about having it myself. 

Oh, yes, latent. That just means it’s there, but it hasn’t made itself known yet. 

I went to WebMD for an explanation of the symptoms of psoriasis. 

“Plaques of red skin, often covered with silver-colored scales. These plaques may be itchy and painful, and they sometimes crack and bleed. In severe cases, the plaques will grow and merge, covering large areas. 

Disorders of the fingernails and toenails, including discoloration and pitting of the nails. The nails may also crumble or detach from the nail bed. 

Plaques of scales or crust on the scalp.” 

I remember a dermatologist telling me a long time ago that this skin disorder causes skin cells to produce 10 times faster than usual and asking me if I had psoriatic arthritis. I looked at him blankly. That resulted in a trip to the rheumatologist.  

Yes, that’s what I had. Arthritis.org was extremely clear about just what psoriatic arthritis [abbreviation: PsA] is: 

“Causes 

PsA (like psoriasis) is an autoimmune disease, which means the body’s immune system mistakenly attacks healthy tissue, causing inflammation and pain and resulting in damage. Researchers aren’t sure why some people develop PsA. They think it’s a combination of having certain genes, which makes them more likely to develop the disease, and being triggered by something in the environment, like an infection, stress, physical trauma or another factor.  

Symptoms: 

Skin: 

Itchy, painful red patches or a silvery white buildup of dead skin cells; most commonly on the knees, elbows and scalp, although a rash can occur anywhere on the body. It is not contagious. [Gail here: same symptoms as psoriasis] 

Joints/Spine: 

Mainly occurs in the fingers (in the joints closest to the nail), wrists, ankles and knees. Symptoms such as pain, tenderness, warmth and swelling, may affect different sides of the body (right hand and left knee). This may be referred to as peripheral arthritis. Sometimes one entire, individual finger or toe will swell up, making it painful and hard to bend. This is referred to as dactylitis. Pain and stiffness in the low back, buttock can also occur. Sometimes the neck and hips are affected and this may be referred to as spondylitis or axial arthritis.  

Nails: 

Cracking, pitting, white spots and lifting from the nail bed can occur. This may be referred to as nail disease. 

Enthesis (plural, entheses): 

Inflammation and swelling of one or more entheses, which are the places in the body where a tendon or ligament connects with a bone. Common spots include at the back of the heel and the bottom of the foot. This is called enthesitis.  
 
Many people with psoriatic arthritis get very tired (fatigue) and some may have a low-grade fever. Symptoms may come and go. A period of increased inflammation and worsening of other symptoms is called a flare. A flare can last for days or months.”   

And now for the biggie- What does any of this have to do with CKD? 

“’Psoriasis is an autoimmune disease of the skin that causes inflammation throughout the entire body,’ says Dr. Aamir Memon, nephrologist on staff at Advocate Sherman Hospital in Elgin, Ill. ‘When you have an autoimmune disease, you have antibodies in your blood, which can deposit anywhere in the body, such as your heart and kidneys. The increased inflammation increases the risk of atherosclerosis (hardening of the arteries) and organ damage.’ 

According to Dr. Memon, many patients with moderate to severe psoriasis take medications like Cyclosporine or Methotrexate as treatment. However, side effects from these medications include kidney problems. 

‘Since psoriasis has effects on the kidneys, it would intuitively make sense to control the inflammation to prevent further worsening of the kidneys,’ Dr Memon says. ‘Further studies are needed to evaluate if that is the case and as to what medications are best to decrease inflammation and prevent or halt kidney disease.’” 

Thank you to health enews at Advocate Aurora Health for the above information. This is a new site for me, so allow me to introduce you to them via their website: 

“health enews is the Midwest’s go-to source for timely, patient-centered and credible health news and information. Our goal is to provide readers with relevant and engaging articles and stories as part of our commitment to building healthy and informed communities across Illinois, Wisconsin and beyond. 

health enews is produced by a team of seasoned journalists and public affairs professionals from across Advocate Aurora Health.” 

From my 11 years of blogging about CKD, I’m beginning to accept that it is all connected. What happens to one part of the body does, indeed, affect the other parts of the body. Now you know how CKD and psoriasis are related, in case you’d ever wondered. 

You may have noticed there are no URLs in the blogs lately. Press control and click on the name of the organization instead. They are linked to the articles mentioned.

Until next week, 

Keep living your life!  

One Thing is Not Like the Other

I’d always thought that albuminuria and proteinuria were one and the same since the words are often use interchangeably. Guess who was wrong. While ‘uria,’ means:  

“a combining form with the meanings ‘presence in the urine’ of that specified by the initial element (albuminuria; pyuria), ‘condition of the urinary tract,’ ‘tendency to urinate as specified (polyuria).’’ 

according to Dictionary.com at https://www.dictionary.com/browse/-uria, albumin and protein are two different substances. 

I know they are closely related, but yet… still not the same. Let’s take a look at albumin: 

“Your liver makes albumin. Albumin carries substances such as hormones, medicines, and enzymes throughout your body.” 

Thank you to University of Rochester’s Medical Center’s Health Encyclopedia at bit.ly/3agVUO8 for this information. 

Wait a minute, the liver? I thought we were dealing with the kidneys. Let me think a minute. I know: we’ll go to the National Institutes of Health’s National Institute of Diabetes and Digestive and Kidney Disease. This is what I found at bit.ly/3pDfmer

“Albuminuria is a sign of kidney disease and means that you have too much albumin in your urine. Albumin is a protein found in the blood. A healthy kidney doesn’t let albumin pass from the blood into the urine. A damaged kidney lets some albumin pass into the urine. The less albumin in your urine, the better.” 

Oh, so the albumin itself doesn’t harm the kidneys, but is a sign of kidney disease. Got it. But it’s a protein. Let’s take a look at the protein part of proteinuria and see if we can figure this out. 

In What Is It and How Did I Get It? Early Stage Kidney Disease, I defined protein as: 

“Amino acids arranged in chains joined by peptide bonds to form a compound, important because some proteins are hormones, enzymes and antibodies.”   

Look at that: hormones and enzymes are mentioned in both definitions. It would make sense to define these two words now. According to my first book on Chronic Kidney Disease, 

“Hormones: Gland produced chemicals that trigger tissues to do whatever their particular job is.” 

I need some examples. Hormone.org has an extensive list.  Some hormones you might recognize are: 

  • Adrenaline 
  • Cortisol 
  • Erythropoietin 
  • Estrogen 
  • Glucagon 
  • Insulin 
  • Melatonin 
  • Oxytocin 
  • Serotonin 
  • Testosterone 
  • Vitamin D 

What about enzymes? The Merriam Webster Dictionary can help us out here. 

“any of numerous complex proteins that are produced by living cells and catalyze specific biochemical reactions at body temperatures” 

I don’t know about you, but I’m better with examples. I took a short list from MedicalNewsToday: 

  • Lipases 
  • Amylase 
  • Lactase 

These terms may look familiar from your quarterly blood tests. 

I still don’t get it. If albumin is a protein, why isn’t it considered proteinuria? MDEdge, a new site for me, but one that seems credible, explains: 

“Proteinuria and albuminuria are not the same thing. Proteinuria indicates an elevated presence of protein in the urine (normal excretion should be < 150 mg/d), while albuminuria is defined as an ‘abnormal loss of albumin in the urine.’…. Albumin is a type of plasma protein normally found in the urine in very small quantities. Albuminuria is a very common (though not universal) finding in CKD patients; is the earliest indicator of glomerular diseases, such as diabetic glomerulosclerosis; and is typically present even before a decrease in the glomerular filtration rate (GFR) or a rise in the serum creatinine…. 

Albuminuria, without or with a reduction in estimated GFR (eGFR), lasting > 3 months is considered a marker of kidney damage. There are 3 categories of persistent albuminuria…. Staging of CKD depends on both the eGFR and the albuminuria category; the results affect treatment considerations.” 

The important part to remember is that both are indicators of Chronic Kidney Disease. 

Switch of topics here. Remember KidneyX? That’s, 

“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.”   

Well, they have an announcement for you: 

“The U.S. Department of Health and Human Services (HHS) and the American Society of Nephrology (ASN) announced the eight winners of the KidneyX COVID-19 Kidney Care Challenge Round 1. The $300,000 challenge has identified solutions that could reduce the transmission of coronavirus among people with kidney disease and/or reduce the risk of kidney damage among people who contract the virus. 

‘We congratulate the Round 1 winners who have highlighted approaches to patient monitoring, patient education, and vaccine distribution,’ said HHS Acting Assistant Secretary for Health Rear Admiral Felicia Collins, MD, MPH. ‘We look forward to the subsequent round of rapid-response innovation that supports COVID-19 risk reduction in kidney patients and health professionals during the pandemic.’ 

Each winner will receive $20,000 in recognition of their solution…. The KidneyX Round 2 winners will be announced in February, 2021. 

COVID-19 Kidney Care Challenge Round 1 Winners 

The following submissions were selected as winners of the COVID-19 Kidney Care Challenge Round 1: 

  • 9 Remote Monitoring Platform to Reduce COVID-19 Risk for Hemodialysis Patients 
  • Free E-Learning Platform with CKD and COVID-19 Patient Education 
  • Immediate Rooming for Patients 
  • Canopy: the Next Generation, Reusable Respirator 
  • Characterizing and Targeting Vaccine Hesitancy Among End-Stage Kidney Disease (ESKD) Patients 
  • COVID-19 in Translation: Making Patient Education Accessible to Minorities 
  • The ‘Good Humoral’ Immunity Truck and Freezer Project 
  • Development of Telemedicine-Enhanced Peritoneal Dialysis Training Protocols During COVID-1″ 

Did you know that patients were involved in these projects? 

We’ve passed a sort of milestone with SlowItDownCKD: this is the 601st blog. If there were no Covid-19, I would invite you all to my house for a Renal Diet Bar-B-Q. We know that’s not going to happen any time soon, so – please – have a special meal at your home with those you love. Wear your masks, keep six feet apart, wash your hands often, keep it to a very small gathering of those who are in your pod (Our pod is very small, just Bear and me.), but have a good time anyway. 

Until next week, 

Keep living your life! 

Mg or Magnesium to You and Me

We usually think of Mg (mg) as the abbreviation for milligrams. Lately, I’ve been hearing a lot about Mg as the symbol for magnesium. In fact, a friend all the way across the country in Florida sent me an article about it from her local town paper. That got me to thinking. I haven’t written about magnesium in over three years. Has anything new been uncovered about this particular electrolyte? But first we need to know what I wrote about it in SlowItDownCKD 2017.  

“The medical dictionary part of The Free Dictionary by Farlex at http://medical-dictionary.thefreedictionary.com/magnesium tells us: 

‘An alkaline earth element (atomic number 12; atomic weight 24.3) which is an essential mineral required for bone and tooth formation, nerve conduction and muscle contraction; it is required by many enzymes involved in carbohydrate, protein and nucleic acid metabolism. Magnesium is present in almonds, apples, dairy products, corn, figs, fresh leafy greens, legumes, nuts, seafood, seeds, soybeans, wheat germ and whole grains. Magnesium may be useful in treating anxiety, asthma and cardiovascular disease; it is thought to prevent blood clots, raise HDL-cholesterol, lower LDL-cholesterol, reduce arrhythmias and blood pressure, and to help with depression, fatigue, hyperactivity and migraines.’ 

All this by an electrolyte that constitutes only 1% of extra cellular fluid? I’m beginning to suspect that magnesium is the under explained electrolyte. 

All right then, what happens if you have too little magnesium?

The U.S. Dept. of Health & Human Services of the National Institutes of Health at https://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/ lays it out for us: 

‘Early signs of magnesium deficiency include loss of appetite, nausea, vomiting, fatigue, and weakness. As magnesium deficiency worsens, numbness, tingling, muscle contractions and cramps, seizures, personality changes, abnormal heart rhythms, and coronary spasms can occur …. Severe magnesium deficiency can result in hypocalcemia or hypokalemia (low serum calcium or potassium levels, respectively) because mineral homeostasis is disrupted….’ 

Well, who’s at risk for magnesium deficiency? The same source tells us: 

‘Magnesium inadequacy can occur when intakes fall below the RDA [Gail here today: RDA is the Recommended Dietary Allowances] but are above the amount required to prevent overt deficiency. The following groups are more likely than others to be at risk of magnesium inadequacy because they typically consume insufficient amounts or they have medical conditions (or take medications) that reduce magnesium absorption from the gut or increase losses from the body. 

People with gastrointestinal diseases 
The chronic diarrhea and fat malabsorption resulting from Crohn’s disease, gluten-sensitive enteropathy (celiac disease), and regional enteritis can lead to magnesium depletion over time …. Resection or bypass of the small intestine, especially the ileum, typically leads to malabsorption and magnesium loss …. 

People with type 2 diabetes [Gail again today: That’s me.] 
Magnesium deficits and increased urinary magnesium excretion can occur in people with insulin resistance and/or type 2 diabetes…. The magnesium loss appears to be secondary to higher concentrations of glucose in the kidney that increase urine output …. 

People with alcohol dependence 
Magnesium deficiency is common in people with chronic alcoholism…. In these individuals, poor dietary intake and nutritional status; gastrointestinal problems, including vomiting, diarrhea, and steatorrhea (fatty stools) resulting from pancreatitis; renal dysfunction with excess excretion of magnesium into the urine; phosphate depletion; vitamin D deficiency; acute alcoholic ketoacidosis; and hyperaldosteronism secondary to liver disease can all contribute to decreased magnesium status …. 

Older adults 
Older adults have lower dietary intakes of magnesium than younger adults …. In addition, magnesium absorption from the gut decreases and renal magnesium excretion increases with age …. Older adults are also more likely to have chronic diseases or take medications that alter magnesium status, which can increase their risk of magnesium depletion ….’” 

Okay, that was then. Let’s see if there’s more news now.  Oh, look at that! I found lots of goodies at https://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/ which is one of the same sites I used in 2017. I suggest you check this site for even more information about magnesium and your health. 

Table 1: Recommended Dietary Allowances (RDAs) for Magnesium  

Age Male Female Pregnancy Lactation 
Birth to 6 months 30 mg* 30 mg*   
7–12 months 75 mg* 75 mg*   
1–3 years 80 mg 80 mg   
4–8 years 130 mg 130 mg   
9–13 years 240 mg 240 mg   
14–18 years 410 mg 360 mg 400 mg 360 mg 
19–30 years 400 mg 310 mg 350 mg 310 mg 
31–50 years 420 mg 320 mg 360 mg 320 mg 
51+ years 420 mg 320 mg   

*Adequate Intake (AI) 
 

Table 2: Selected Food Sources of Magnesium  

Food Milligrams 
(mg) per 
serving 
Percent 
DV* 
Pumpkin seeds, roasted, 1 ounce 156 37 
Chia seeds, 1 ounce 111 26 
Almonds, dry roasted, 1 ounce 80 19 
Spinach, boiled, ½ cup 78 19 
Cashews, dry roasted, 1 ounce 74 18 
Peanuts, oil roasted, ¼ cup 63 15 
Cereal, shredded wheat, 2 large biscuits 61 15 
Soymilk, plain or vanilla, 1 cup 61 15 
Black beans, cooked, ½ cup 60 14 
Edamame, shelled, cooked, ½ cup 50 12 
Peanut butter, smooth, 2 tablespoons 49 12 
Potato, baked with skin, 3.5 ounces 43 10 
Rice, brown, cooked, ½ cup 42 10 
Yogurt, plain, low fat, 8 ounces 42 10 
Breakfast cereals, fortified with 10% of the DV for magnesium, 1 serving 42 10 
Oatmeal, instant, 1 packet 36 
Kidney beans, canned, ½ cup 35 
Banana, 1 medium 32 
Salmon, Atlantic, farmed, cooked, 3 ounces 26 
Milk, 1 cup 24–27 
Halibut, cooked, 3 ounces 24 
Raisins, ½ cup 23 
Bread, whole wheat, 1 slice 23 
Avocado, cubed, ½ cup 22 
Chicken breast, roasted, 3 ounces 22 
Beef, ground, 90% lean, pan broiled, 3 ounces 20 
Broccoli, chopped and cooked, ½ cup 12 
Rice, white, cooked, ½ cup 10 
Apple, 1 medium 
Carrot, raw, 1 medium 2” 

As mentioned in my earlier blog on magnesium: 

“Quick, go check your lab results. You’ll notice there’s no magnesium level. If you’d like your magnesium tested, you or your doctor need to order a specific test for that. Some labs will allow you to order your own magnesium test; others will require a doctor’s orders.” 

Until next week, 

Keep living your life! 

How Rare is This?

I have been hearing about so many different kinds of kidney disease that I’d forgotten which I’d written about. UMOD nephropathy is one that has kept coming up this past week or so. That got me to thinking… yep, I did write about it once before. It seems I had trouble getting any information at that time. Let’s try again. 

To start, here is some of the information about the disease that I included in SlowItDownCKD 2019. 

This is what the U.S. National Library of Medicine at bit.ly/3sykq5O had to say: 

‘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).’” 

By the way, the U.S. National Library of Medicine is part of the National Institutes of Health. 

I suspected I could find more information since almost two years have passed and I did. The Genetic and Rare Diseases Information Center (GARD), which is part of the National Center for Advancing Translational Sciences which, in turn, is part of the National Institutes of Health (just as the U.S. National Library of Medicine is) at Bit.ly/35KOalW offered the following:   

Autosomal dominant tubulointerstitial kidney disease due to UMOD mutations (ADTKD–UMOD) is an inherited disorder that causes a gradual loss of kidney function that eventually leads to the need for kidney transplantation or dialysis between the ages of 30 and 70. Patients with ADTKD-UMOD have high blood levels of uric acid before kidney failure develops, and some affected individuals may develop gout. Gout is a form of arthritis (inflammation) that occurs often in the big toe, ankle, knee, or other joints…. ADTKD-UMOD is caused by a mistake (mutation) in the UMOD gene, which leads to the build-up of the altered uromodulin protein in the tubules [Gail here: These are small tubes in your kidneys.] the kidney, leading to slow loss of kidney function. ADTKD-UMOD is inherited in a dominant pattern in families. It is diagnosed based on the symptoms, laboratory testing, family history and genetic testing. Many of the symptoms of ADTKD-UMOD can be treated with medication. For patients whose kidney function worsens to end-stage kidney disease, kidney transplant and dialysis can be used. The long-term outlook for people with ADTKD-UMOD is good, though patients may require dialysis or kidney transplantation between the ages of 30 and 70….” 

I was having a bit of trouble with the different names of the disease, so I turned to the National Center for Biotechnology Information (NCBI) at https://www.ncbi.nlm.nih.gov/books/NBK1356/ for clarification: 

“Autosomal dominant tubulointerstitial kidney disease caused by UMOD pathogenic variants (ADTKD-UMOD) was previously known as familial juvenile hyperuricemic nephropathy type 1 (FJHN1), medullary cystic kidney disease type 2 (MCKD2), and UMOD-associated kidney disease (or uromodulin-associated kidney disease)” 

The NCBI is ultimately also part of (surprise!) the National Institutes of Health. 

Well, that helped but you may also need this definition found in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease’s Glossary: 

Nephropathy: Kidney disease.” 

Hmmm, come to think of it, we could use a few more definitions. Thank you to Medline Plus for the definitions: 

Uremic acid: Uric acid is a chemical created when the body breaks down substances called purines. Purines are normally produced in the body and are also found in some foods and drinks. Foods with high content of purines include liver, anchovies, mackerel, dried beans and peas, and beer. 

UMOD gene: The UMOD gene provides instructions for making a protein called uromodulin. This protein is produced by the kidneys and then excreted from the body in urine. The function of uromodulin remains unclear, although it is known to be the most abundant protein in the urine of healthy individuals. Researchers have suggested that uromodulin may protect against urinary tract infections. It may also help control the amount of water in urine. 

This is quite a bit of information, but we still need the symptoms? According to Wake Forest Baptist Health at bit.ly/3oRN7s8

“There are three common features of this disease: 

Patients develop chronic kidney failure with loss of kidney function beginning in the teenage years and progressing to the need for dialysis or kidney transplantation at an age between 30 and 70 years. Patients have few or no symptoms of kidney disease when they are diagnosed. 

Usually, affected individuals are found to have some loss of kidney function when they undergo blood testing by their doctor as part of a general health screening. A blood test called the serum creatinine level is performed. If the blood creatinine level is above 1, this is usually abnormal and means the kidney is not removing the creatinine from the blood well enough. …. Frequently the doctor does not know why the serum creatinine level is high. Even if a kidney biopsy (the removal of a small piece of kidney tissue) is performed, a correct diagnosis is frequently not made. 

The patient has gout or some member of the family has a history of gout …. Affected individuals have high blood uric acid levels, and this leads to gout. Every affected individual in the family may not have gout, but there are usually at least one or two people in the family who have gout. Gout frequently involves the big toe, the foot, or the knee. The big toe will become extremely tender, and even placing a sheet on the toe will cause pain. In this condition, gout occurs in the late teenage years in both men and women. (In contrast, gout developing in the normal adult population tends to occur in overweight men in their 30’s to 50’s). Family members may develop bumps on their joints called tophi that are deposits of uric acid. 

The disease is likely to be inherited. If a person has the disease, their children have a 1 out of 2 (50%) chance of having the disease. The disease does not skip a generation, though a parent may be less severely affected than their child, and may not have gout or other signs of kidney disease for some time. Therefore, there is usually a strong family history of the condition.” 

Unfortunately, there is no cure for this rare disease – there are medications available to treat the symptoms. Only 400 people worldwide suffer from UMOD Nephropathy. 

Until next week, 

Keep living your life! 

Learning Every Day

 Chronic Kidney Disease is all over my world. You know when you have your ears open for a certain term, you seem to hear it all the time? That’s what my life has been like for the last dozen years. When I noticed a comment in a Facebook kidney disease support group about Action myoclonus–renal failure (AMRF) syndrome, I was stunned. Here was yet another possible kidney disease I’d never heard of. 

As defined by MedlinePlus, a division of the National Health Institutes (which is a division of the U.S. National Library of Medicine) at http://bit.ly/2KY6EI8,  

“Action myoclonus–renal failure (AMRF) syndrome causes episodes of involuntary muscle jerking or twitching (myoclonus) and, often, kidney (renal) disease. Although the condition name refers to kidney disease, not everyone with the condition has problems with kidney function.” 

I was intrigued and wanted to know more. So, I did what I usually do when that happens. I poked around everywhere I could think of on the internet. My first hit was on The National Center for Biotechnology Information (NCBI), which is part of The U.S. National Library of Medicine at https://www.ncbi.nlm.nih.gov/books/NBK333437/

“Action myoclonus – renal failure (AMRF) syndrome typically comprises a continuum of two major (and ultimately fatal) manifestations: progressive myoclonic epilepsy (PME) and renal failure; however, in some instances, the kidneys are not involved. Neurologic manifestations can appear before, simultaneously, or after the renal manifestations. Disease manifestations are usually evident in the late teens or early twenties. In the rare instances in which renal manifestations precede neurologic findings, onset is usually in late childhood / early adolescence but can range to the fifth or sixth decade.” 

Uh-oh, epilepsy. One of my children has that. Luckily for her, she doesn’t have CKD. But we still need more information… or, at least, I do. For instance, how does the illness progress? 

Rare Disease InfoHub at http://bit.ly/37Qgo0h answered this particular question. 

“The movement problems associated with AMRF syndrome typically begin with involuntary rhythmic shaking (tremor) in the fingers and hands that occurs at rest and is most noticeable when trying to make small movements, such as writing. Over time, tremors can affect other parts of the body, such as the head, torso, legs, and tongue. Eventually, the tremors worsen to become myoclonic jerks, which can be triggered by voluntary movements or the intention to move (action myoclonus). These myoclonic jerks typically occur in the torso; upper and lower limbs; and face, particularly the muscles around the mouth and the eyelids. Anxiety, excitement, stress, or extreme tiredness (fatigue) can worsen the myoclonus. Some affected individuals develop seizures, a loss of sensation and weakness in the limbs (peripheral neuropathy), or hearing loss caused by abnormalities in the inner ear (sensorineural hearing loss). Severe seizures or myoclonus can be life-threatening.” 

But we haven’t looked at the kidneys yet. How are they involved in those who develop kidney problems from this rare disease? Let’s go back to MedlinePlus to see what we can find. Don’t be surprised that the answer is fairly general: 

“When kidney problems occur, an early sign is excess protein in the urine (proteinuria). Kidney function worsens over time, until the kidneys are no longer able to filter fluids and waste products from the body effectively (end-stage renal disease).” 

Do you remember what proteinuria is? Here’s a reminder from my first CKD book – What Is It and How Did I Get It? Early Stage Chronic Kidney Disease – in case you’ve forgotten: 

“Protein in the urine, not a normal state of being” 

Hmmm, proteinuria is exactly what it sounds like. That got me to thinking: How does the protein get into the urine in the first place? 

“Protein gets into the urine if the kidneys aren’t working properly. Normally, glomeruli, which are tiny loops of capillaries (blood vessels) in the kidneys, filter waste products and excess water from the blood. 

Glomeruli pass these substances, but not larger proteins and blood cells, into the urine. If smaller proteins sneak through the glomeruli, tubules (long, thin, hollow tubes in the kidneys) recapture those proteins and keep them in the body. 

However, if the glomeruli or tubules are damaged, if there is a problem with the reabsorption process of the proteins, or if there is an excessive protein load, the proteins will flow into the urine.” 

Thank you to a trusted site, The Cleveland Clinic at http://cle.clinic/3nTjLZI for helping us out here.

The important point here is that proteinuria, or albumin as it is often called, prevents the substances that belong in your blood stream from fully remaining there to help you: 

“Blood contains two main kinds of proteins: albumin and globulins. Blood proteins help your body produce substances it needs to function. These substances include hormones, enzymes and antibodies. 

Usually, the amount of total protein in your blood is relatively stable.” 

I’d gone back to the reliable Cleveland Clinic for this information. 

I don’t know about you as you read today’s blog, but I found writing it exhausting. Of course, that may be due to the fact that Christmas Eve and Christmas Day have just passed. I’m not quite as vigilant as I usually am about the renal diet during certain celebrations. Considering that Bear’s Lutheran and I’m Jewish, that was a lot of celebrating. I see my exhaustion as an endorsement to get right back on the kidney diet. 

Here’s hoping your Chanukah, Christmas, Boxing Day, and Kwanza were as happy as you’d hoped under the restrictions of small group gatherings, six foot distancing, and mask wearing. We stayed home alone using the phone and Facetime to be with family.  

It was… different. But more importantly, it was safe. Keep in mind that you’re already immuno-compromised simply by having CKD. If you no longer have a spleen like me (Thanks, pancreatic cancer.), you’re even more immunocompromised. Hugs are the best, but they could be deadly for us. Stay safe. 

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! 

To Dye or Not

Last week, I underwent a three-month scan for cancer. I am still cancer free, so let’s get that out of the way. I’m so cancer free that I started thinking about those with kidney cancer who have scans. That’s when I started asking questions about this procedure that I’ve already undergone what seems like a million times. My questions, while answered by the technicians, of course led me to other questions. Here are the answers. 

Let’s start at the beginning. Do we use CT or CAT Scan when referring to this kind of test? According to Cincinnati Children’s Hospital Medical Center’s Blog at https://bit.ly/3lKrkjP:  

“… CAT and CT scans both mean the same type of diagnostic examination. CAT was used earlier in its history, while CT is the recent up-to-date term for convenience sake. The term CT stands for computed tomography and the term CAT stands for computed axial tomography or computerized axial tomography scan.” 

Huh? I get ‘computed,’ but what’s ‘tomography’? On to my favorite dictionary of all time. You guessed it; The Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/tomography tells us, it’s: 

“a method of producing a three-dimensional image of the internal structures of a solid object (such as the human body or the earth) by the observation and recording of the differences in the effects on the passage of waves of energy impinging on those structures” 

Ah, that makes sense. Now what about this iodine dye that we, as Chronic Kidney Disease patients, are not supposed to have? I went to Inside Radiology at https://www.insideradiology.com.au/iodine-containing-contrast-medium/ for information. 

“Iodine-containing contrast medium (ICCM), sometimes called contrast or contrast medium, is a chemical substance used in medical X-ray imaging [Gail here: CT is a sort of X-ray.]. When injected into the body, ICCM shows what is happening inside the hollow parts of the body (like blood vessels, the stomach, bowel or even the fluid around the spinal cord) on X-ray images or pictures. When injected into a blood vessel, which can be either an artery or a vein, it not only shows the inside of the blood vessel, but it can give information about how the organs supplied by that blood vessel are working. Good examples of this are the kidneys, brain and lungs.” 

I still have my port from chemotherapy, so that was used to inject the iodine dye. Reminder, 

“A chemo port is a small, implantable reservoir with a thin silicone tube that attaches to a vein. The main advantage of this vein-access device is that chemotherapy medications can be delivered directly into the port rather than a vein, eliminating the need for needle sticks.” 

Thank you, Moffit Cancer Center, at https://moffitt.org/treatments/chemotherapy/what-is-a-chemo-port/ for this information. It’s pretty clear ports can also be used for the dye, blood draws, and infusions of any kind. For example, I’m receiving iron infusion once a week via my port. 

I know the big question here is why am I having contrast dye when it’s not recommended for CKD patients. Let’s take a closer look at that warning.

“’The historical fears of kidney injury from contrast-enhanced CT have led to unmeasured harms related to diagnostic error and diagnostic,’ explained lead author Matthew S. Davenport, MD, associate professor of radiology and urology at the University of Michigan in Ann Arbor, Michigan. ‘Modern data clarify that this perceived risk has been overstated….’” 

The above statement is from U.S. Pharmacist at https://www.uspharmacist.com/article/risk-of-contrast-media-in-reduced-kidney-function-patients-overstated

I’m comfortable with iodine contrast. First, it was clear that cancer took precedence over my kidney health, but now I’m not worried about it because of the overstatements. 

After the CT, saline was infused into my port. Wolf Medical Supply at https://bit.ly/3gjx8Q6 did a great job of explaining what this is and how it’s preformed in layman’s terms: 

“A saline flush is used to help prevent IV catheters from becoming blocked and to help remove any medication that may be left at the catheter site. 

A saline flush is a sterile mix of salt and water that is compatible with your body’s fluids and tissues. Typically, the healthcare provider will fill a syringe using a bottle of normal saline solution or use a prefilled flush syringe that’s been prepared under sterile conditions. 

To flush the IV, first, clean the IV port or hub, then connect an IV saline flush syringe to the port, slowly pull back on the syringe plunger, inject the saline solution into the IV line, and then start the medication drip. Before beginning another infusion, your provider will flush the line again.” 

We’re not done yet, though. Next came a heparin flush. Does the word ‘heparin’ sound familiar?  According to Drugs.com at https://bit.ly/3qvmGcW,   

“Heparin is an anticoagulant (blood thinner) that prevents the formation of blood clots. Heparin is used to treat and prevent blood clots caused by certain medical conditions or medical procedures. It is also used before surgery to reduce the risk of blood clots.” 

I didn’t understand why I needed heparin after a CT. WebMD at https://bit.ly/3mUeCjK explained: 

“This medication is used to keep IV catheters open and flowing freely. Heparin helps to keep blood flowing smoothly and from clotting in the catheter by making a certain natural substance in your body (anti-clotting protein) work better….” 

While I understood the CT process now, and hope that you do, too, there are warnings in place. For example,  

“Patients with kidney failure or other kidney problems should notify their doctor. In some cases, the contrast media can cause kidney failure, especially in patients with underlying kidney problems or dehydration. Patients taking the diabetes medication metformin (Glucophage), or its derivatives, who receive contrast are at increased risk of developing a condition called metabolic acidosis, or an unsafe change in blood pH, and the drug may be halted for 48 hours after the procedure.” 

The above is also from WebMD, but this time at https://www.webmd.com/drugs/2/drug-60428/heparin-lock-intravenous/details.  

I take the warning to mean speak with your nephrologist first. Although, your case may be like mine was: cancer first, then kidneys, especially if it’s kidney cancer. But we always speak with our nephrologists first, don’t we?  

Until next week, 

Keep living your life!

Have You Heard of This?

Fabry’s Disease. I’ve noticed some posts on Facebook about this and now I’ve been invited to join the Kidneys and Fabry’s Disease group on Facebook. It’s amazing timing since I had decided the day before being asked to join the group that I’d be writing about it for today’s blog. The fun part for me is that I know absolutely nothing about this disease, so I get to explore it. 

The first thing I learned is that it has multiple names. The National Organization for Rare Disorders (NORD) at https://rarediseases.org/rare-diseases/fabry-disease/ lists them as: 

  • “alpha-galactosidase A deficiency 
  • Anderson-Fabry disease 
  • angiokeratoma corporis diffusum 
  • angiokeratoma diffuse 
  • GLA deficiency” 

We’ll use the name Fabry’s Disease for this blog. 

Let’s start at the beginning with an explanation of what it is. You’re going to have to read this slowly and carefully… or, at least, I did. It’s from The National Fabry Disease Organization at https://www.fabrydisease.org/index.php/about-fabry-disease/what-is-fabry-disease

“Fabry disease is a rare genetic disorder caused by a defective gene (the GLA gene) in the body. In most cases, the defect in the gene causes a deficient quantity of the enzyme alpha-galactosidase A. This enzyme is necessary for the daily breakdown (metabolism) of a lipid (fatty substance) in the body called globotriaosylceramide abbreviated GL-3 or GB-3. When proper metabolism of this lipid and other similar lipids does not occur, GL-3 accumulates in the majority of cells throughout the body. The resulting progressive lipid accumulation leads to cell damage. The cell damage causes a wide range of mild to severe symptoms including potentially life-threatening consequences such as kidney failure, heart attacks and strokes often at a relatively early age. Fabry disease is a progressive, destructive and potentially life-threatening disease. Fabry disease can affect males and females of all ethnic and cultural backgrounds.” 

That does not sound good. I wondered if there were symptoms. Remember that sometimes – like in my case – Chronic Kidney Disease doesn’t have symptoms. WebMd at https://www.webmd.com/a-to-z-guides/fabry-disease#1 tells us you may experience the following: 

“Pain and burning in your hands and feet that get worse with exercise, fever, hot weather, or when you’re tired 

Small, dark red spots usually found between your bellybutton and knees 

Cloudy vision 

Hearing loss 

Ringing in the ears 

Sweating less than normal 

Stomach pain, bowel movements right after eating” 

This is definitely something I wouldn’t want to play around with. Remember we discovered earlier in the blog that it’s genetic. That means you inherit it. Cedars-Sinai, a Los Angeles nonprofit academic healthcare organization at https://www.cedars-sinai.org/health-library/diseases-and-conditions/f/fabrys-disease.html informs us: 

“There is no cure for Fabry’s disease. However, in some cases the disease can be stopped from progressing if treated early enough. The first treatment generally is an enzyme replacement therapy which works to normalize the body’s ability to break down the fat.” 

Healthline (Yes, that Healthline) at https://www.healthline.com/health/fabry-disease explains that Fabry’s Disease can be very serious: 

“…. It’s progressive and can be life-threatening. People with FD have a damaged gene that leads to a shortage of an essential enzyme. The shortage results in a buildup of specific proteins in the body’s cells, causing damage to the: 

heart 

lungs 

kidneys 

skin 

brain 

stomach 

The disease affects both men and women in all ethnic groups, but men are usually more severely affected.” 

Hopefully, you noticed ‘kidneys’ in the list above. That is why I’ve included this disease in the kidney disease blogs. I want to remind you that this is a rare disease and that the purpose of the blog is to inform, not frighten. 

Further complicating our explanation is that there are two kinds of Fabry’s Disease. I turned to Fabry Disease News at https://fabrydiseasenews.com/type-2-fabry-disease/ for more information. 

“Fabry disease primarily has two recognized forms — type 1 (classical form) is the most severe and is associated with very little or no alpha-galactosidase activity, while type 2 (late-onset form) is milder with some residual enzyme activity.” 

This makes me think of Diabetes. Type 1 occurs when there is no insulin produced, while Type 2 occurs when there is insulin resistance and is a milder form of Diabetes. 

I wanted more about kidney disease and Fabry’s Disease so I kept poking around and I found it on The U.S. Department of Health and Human Services’ National Institutes of Health’s National Center for Advancing Translational Sciences’ Genetic and Rare Disease Information Center (That is one long title.) at https://bit.ly/325QD8K,  

ACE inhibitors may be used to treat decreased kidney function (renal insufficiency). ACE inhibitors can reduce the loss of protein in the urine (proteinuria). If kidney function continues to decrease dialysis and/or kidney transplantation may be necessary. A kidney transplanted successfully into a person with Fabry disease will remain free of the harmful build up of the fatty acid GL3 and therefore will restore normal kidney function. However it will not stop the buildup of GL3 in other organs or systems of the body. In addition, all potential donors that are relatives of the person with known Fabry disease should have their genetic status checked to make sure they do not have a pathogenic variant (mutation) in the GLA gene (even if they do not have symptoms).” 

Does this sound familiar? It’s also what can happen in CKD without involving the other organs, of course. 

The National Institute of Health’s National Institute of Neurological Disorders and Stroke at https://bit.ly/35RQ6Ze offers opportunities to join clinical trials and provides Fabry Disease patient organizations. The organizations listed presently are: 

Fabry Support & Information Group 

 
National Fabry Disease Foundation 

 
National Organization for Rare Disorders (NORD) 

 
National Tay-Sachs and Allied Diseases Association 

My head is spinning with all this new information right now and I suppose yours is, too. Maybe it’s time to stop and let us both digest it. 

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! 

You Think It’s All in Your Head?

As I was sitting in my allergist’s office last week, I started to wonder if Chronic Kidney Disease had anything to do with my runny nose. I’d thought it was the usual seasonal allergies, but over the last dozen years or so I’ve learned that almost every malady I experience has some kind of relation to my kidneys…  so why not the runny nose? 

The American Kidney Fund at https://bit.ly/3kvpjb9 explains for us: 

“Granulomatosis with polyangiitis (GPA), formerly known as Wegener’s granulomatosis, is a disease that causes swelling and irritation of blood vessels in the kidneys, nose, sinuses, throat and lungs. Swollen blood vessels make it harder for blood to get to the organs and tissues that need it, which can be harmful. The disease also causes lumps called granulomas to form and damage the area around them. In some people GPA only affects the lungs. GPA that affects the kidneys can lead to chronic kidney disease and kidney failure.” 

Whoa! Not good. Let’s see how it’s treated. The Cleveland Clinic at https://cle.clinic/3mjudss tells us, 

“People with GPA who have critical organ system involvement are generally treated with corticosteroids [Gail here: commonly just called steroids] combined with another immunosuppressive medication such as cyclophosphamide (Cytoxan ®) or rituximab (Rituxan®). In patients who have less severe GPA, corticosteroids and methotrexate can be used initially. The goal of treatment is to stop all injury that is occurring as a result of GPA. If disease activity can be completely ‘turned off,’ this is called ‘remission.’ Once it is apparent that the disease is improving, doctors slowly reduce the corticosteroid dose and eventually hope to discontinue it completely. When cyclophosphamide is used, it is only given until the time of remission (usually around 3 to 6 months), after which time it is switched to another immunosuppressive agent, such as methotrexate, azathioprine (Imuran®), or mycophenolate mofetil (Cellcept®) to maintain remission. The treatment duration of the maintenance immunosuppressive medication may vary between individuals. In most instances, it is given for a minimum of 2 years before consideration is given to slowly reduce the dose toward discontinuation.” 

If this sounds familiar, you’re right. It’s straight out of this year’s May 25th blog. Aha! Now we see the value of using the category drop down to the right of the blog. 

Anyway, while this is interesting (to me, at least), it’s not answering my question: Can CKD cause sinus problems. What was that? You want to know what a runny nose has to do with your sinuses? Let’s find out.  

I returned to the ever-reliable Cleveland Clinic, this time at https://cle.clinic/2FXOm7Q,  for some information: 

“Sinusitis is an inflammation, or swelling, of the tissue lining the sinuses. The sinuses are four paired cavities (spaces) in the head. They are connected by narrow channels. The sinuses make thin mucus that drains out of the channels of the nose. This drainage helps keep the nose clean and free of bacteria. Normally filled with air, the sinuses can get blocked and filled with fluid. When that happens, bacteria can grow and cause an infection (bacterial sinusitis). 

This is also called rhinosinusitis, with ‘rhino’ meaning ‘nose.’ The nasal tissue is almost always swollen if sinus tissue is inflamed.” 

It seems that you need a runny nose to avoid sinusitis. Is that right? I don’t think so, and neither does MedicineNet at https://www.medicinenet.com/sinusitis/article.htm.  

“Sinusitis signs and symptoms include 

sinus headache, 

facial tenderness, 

pressure or pain in the sinuses, in the ears and teeth, 

fever, 

cloudy discolored nasal or postnasal drainage, [I bolded this symptom.] 

feeling of nasal stuffiness, 

sore throat, 

cough, and 

occasionally facial swelling.” 

So, now it seems that a runny nose can be a symptom of sinusitis. 

Photo by Andrea Piacquadio on Pexels.com

And how does that fit in with having CKD? Before we answer that, I think we need to straighten out the differences between allergy and cold symptoms since both conditions may cause sinusitis. 

“The symptoms of allergies and sinusitis overlap a lot. Both can give you a stuffy nose. If it’s allergies, you may also have: 

Runny nose and sneezing 

Watery or itchy eyes 

Wheezing 

If it’s sinusitis, besides a stuffy nose, you may have: 

Thick, colored mucus 

Painful, swollen feeling around your forehead, eyes, and cheeks 

Headache or pain in your teeth 

Post-nasal drip (mucus that moves from the back of your nose into your throat) 

Bad breath 

Cough and sore throat 

Fatigue 

Light fever” 

Thank you to WebMD at https://www.webmd.com/allergies/sinusitis-or-allergies for the list above.  

 On to my original question. This is from Vick’s at https://vicks.com/en-us/treatments/how-to-treat-a-cold/how-to-stop-a-runny-nose. (Who better to go to than a trusted friend since childhood?)  

“A runny nose is a discharge of mucus from the nostrils. It’s the result of excess nasal mucus production. The excess nasal mucus leads to watery nasal secretions that flow out of your nostrils or drip down into your throat. A runny nose is a discharge of mucus from the nostrils. It’s the result of excess nasal mucus production. The excess nasal mucus leads to watery nasal secretions that flow out of your nostrils or drip down into your throat. Nasal congestion is due to the inflammation of the linings of the nasal cavity.” 

Did you notice the word “inflammation” in the last sentence? Ahem, an article by Oleh M Akchurin of Weill Cornell Medical College and Frederick J Kaskel of Albert Einstein College of Medicine published by ResearchGate at https://bit.ly/3jtVzKL states: 

“Chronic inflammation should be regarded as a common comorbid condition in CKD and especially in dialysis patients.”   

And there you have it. Your (and my) runny nose can be caused – in part – from having CKD. Inflammation is the name of the game if you have Chronic Kidney Disease. 

Although, in these times, I wonder if Covid-19 might somehow be involved in certain cases. Just remember, I’m not a doctor and never claimed to be one, so this just might be a question for your medical provider. 

Until next week, 

Keep living your life! (Safely: mask up, wash up, social distance) 
 

Cellulitis, CKD, and Diabetes

My uncle-in-law had it. My children’s father had it. My husband had it. Now the question is what is cellulitis? 

WebMd at https://www.webmd.com/skin-problems-and-treatments/guide/cellulitis#1 answers: 

“Cellulitis is a common infection of the skin and the soft tissues underneath. It happens when bacteria enter a break in the skin and spread. The result is infection, which may cause swelling, redness, pain, or warmth.” 

Alright, but what does that have to do with Chronic Kidney Disease. By the way, only one of the men mentioned in the first paragraph has CKD.  

According to the NHS (National Health Service) in the United Kingdom at https://bit.ly/2IJJrbT: 

“You’re more at risk of cellulitis if you: 

  • have poor circulation in your arms, legs, hands or feet – for example, because you’re overweight 
  • find it difficult to move around 
  • have a weakened immune system because of chemotherapy treatment or diabetes [Gail here: I bolded that.] 
  • have bedsores (pressure ulcers) 
  • have lymphoedema, which causes fluid build-up under the skin 
  • inject drugs 
  • have a wound from surgery 
  • have had cellulitis before” 

Two of the men above were overweight, but one of these did not have CKD. The overweight man who had CKD also had diabetes. One had a wound from surgery which was the cause of his cellulitis. Another had had cellulitis before. (Does this sound like one of those crazy math word questions?) 

CKD is not a cause? Whoa! Whoa! Whoa! Wait just a minute here. Let’s remember that CKD gives you the lovely present of a compromised immune system. A compromised immune system means it doesn’t do such a great job of preventing illnesses and infections. 

Also remember that diabetes is the leading cause of CKD and diabetes can also weaken your immune system. I needed more information about diabetes doing that and I got it from The University of Michigan’s Michigan Medicine at https://www.uofmhealth.org/health-library/uq1148abc:    

“High blood sugar from diabetes can affect the body’s immune system, impairing the ability of white blood cells to come to the site of an infection, stay in the infected area, and kill microorganisms. Because of the buildup of plaque in blood vessels associated with diabetes, areas of infection may receive a poor blood supply, further lowering the body’s ability to fight infections and heal wounds.” 

Remember that cellulitis is an infection. Reading the above, I became aware that I didn’t know anything about plague in the blood vessels and diabetes, so I went right to what I consider the source for vascular information, Vascular.org. This time at https://bit.ly/31dZ0yI:  

“Peripheral artery (or arterial) disease, also known as PAD, occurs when plaque builds up in the arteries and reduces blood flow to the feet and legs. Fairly common among elderly Americans, PAD is even more likely among those with diabetes, which increases plaque buildup.” 

All three of these men were elderly, if you consider in your 70s elderly. Of course, I don’t since I’m in my 70s, but we are talking science here. 

Hmmm, we don’t know yet how cellulitis is treated, do we? Let’s find out. I turned to my old buddy, The MayoClinic at https://www.mayoclinic.org/diseases-conditions/cellulitis/diagnosis-treatment/drc-20370766:  

“Cellulitis treatment usually includes a prescription oral antibiotic. Within three days of starting an antibiotic, let your doctor know whether the infection is responding to treatment. You’ll need to take the antibiotic for as long as your doctor directs, usually five to 10 days but possibly as long as 14 days. 

In most cases, signs and symptoms of cellulitis disappear after a few days. You may need to be hospitalized and receive antibiotics through your veins (intravenously) if: 

Signs and symptoms don’t respond to oral antibiotics 

Signs and symptoms are extensive 

You have a high fever 

Usually, doctors prescribe a drug that’s effective against both streptococci and staphylococci. It’s important that you take the medication as directed and finish the entire course of medication, even after you feel better. 

Your doctor also might recommend elevating the affected area, which may speed recovery…. 

Try these steps to help ease any pain and swelling: 

Place a cool, damp cloth on the affected area as often as needed for your comfort. 

Ask your doctor to suggest an over-the-counter pain medication to treat pain. [Gail again: no NSAIDS, you have CKD.] 

Elevate the affected part of your body.” 

Now the obvious question is how, as CKD patients and possibly diabetics, do we avoid that infection in the first place? 

“Cellulitis cannot always be prevented, but the risk of developing cellulitis can be minimised by avoiding injury to the skin, maintain [sic] good hygiene and by managing skin conditions like tinea and eczema. 

A common cause of infection to the skin is via the fingernails. Handwashing is very important as well as keeping good care of your nails by trimming and cleaning them. Generally maintaining good hygiene such as daily showering and wearing clean clothes may help reduce the skin’s contact with bacteria. 

If you have broken skin, keep the wound clean by washing daily with soap and water or antiseptic. Cover the wound with a gauze dressing or bandaid every day and watch for signs of infection. 

People who are susceptible to cellulitis, for example people with diabetes or with poor circulation, should take care to protect themselves with appropriate footwear, gloves and long pants when gardening or bushwalking, when it’s easy to get scratched or bitten. Look after your skin by regularly checking your feet for signs of injury, moisturising the skin and trimming fingernails and toenails regularly.” 

Thank you to Australia’s HealthDirect at https://www.healthdirect.gov.au/cellulitis-prevention for these common sense reminders. Actually, we need to keep washing our hands while Covid-19 is at our door anyway, so we’ve already got that part of the prevention covered. I suspect that many of us don’t bother to deal with small wounds, but it looks like we’d better start. 

What if you do develop cellulitis? How will you be treated? My old buddy, The Mayo Clinic at https://mayocl.in/2FDxUtf tells us: 

“Cellulitis treatment usually includes a prescription oral antibiotic. Within three days of starting an antibiotic, let your doctor know whether the infection is responding to treatment. You’ll need to take the antibiotic for as long as your doctor directs, usually five to 10 days but possibly as long as 14 days. 

In most cases, signs and symptoms of cellulitis disappear after a few days. You may need to be hospitalized and receive antibiotics through your veins (intravenously) if: 

Signs and symptoms don’t respond to oral antibiotics 

Signs and symptoms are extensive 

You have a high fever 

Usually, doctors prescribe a drug that’s effective against both streptococci and staphylococci. It’s important that you take the medication as directed and finish the entire course of medication, even after you feel better. 

Your doctor also might recommend elevating the affected area, which may speed recovery.” 

Until next week, 

Keep living your life! (Safely, please) 

 

They Go Together… Sometimes 

I’m certain you’ve already read about Covid-19 causing Acute Kidney Injury (AKI). To the best of our knowledge, it’s airborne which means the lungs are involved. But did you know there’s a correlation between the lungs and the kidneys?

Think of it this way. You know Chronic Kidney Disease (CKD) can be the cause of diabetes (sigh, that’s me) or hypertension (high blood pressure). You also know that hypertension can be the cause of CKD (sigh, that’s me again.) Well, AKI can be the cause of Acute Lung Disease (ALI) and ALI can be the cause of Acute Kidney Disease.

I know I just blindsided you with a new medical term, so let’s find out just what ALI is.  I went to The National Organization for Rare Disorders at https://rarediseases.org/rare-diseases/acute-respiratory-distress-syndrome/ for what turned out to be a rather comprehensive answer:

“Acute respiratory distress syndrome (ARDS) is a type of severe, acute lung dysfunction affecting all or most of both lungs that occurs as a result of illness or injury. Although it is sometimes called adult respiratory distress syndrome, it may also affect children. ARDS is a buildup of fluid in the small air sacs (alveoli) in the lungs. This makes it difficult for oxygen to get into the bloodstream.”

Ah, so ALI and Acute Respiratory Distress Syndrome (ARDS) are one and the same. That should make finding information about it a bit easier.

We’ve just learned that ALI can cause AKI and vice-versa, but what can cause ALI beside Covid-19? This list is from the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/ards/symptoms-causes/syc-20355576. Notice they do include COVID-19 as a cause of ARDS.

  • “Sepsis. The most common cause of ARDS is sepsis, a serious and widespread infection of the bloodstream.
  • Inhalation of harmful substances. Breathing high concentrations of smoke or chemical fumes can result in ARDS, as can inhaling (aspirating) vomit or near-drowning episodes.
  • Severe pneumonia. Severe cases of pneumonia usually affect all five lobes of the lungs.
  • Head, chest or other major injury. Accidents, such as falls or car crashes, can directly damage the lungs or the portion of the brain that controls breathing.
  • Coronavirus disease 2019 (COVID-19). People who have severe COVID-19 may develop ARDS.
  • Others. Pancreatitis (inflammation of the pancreas), massive blood transfusions and burns.”

We can probably guess that one of the symptoms of ALI or ARDS is breathlessness, but let’s see if there are any others. I decided to go to Healthline at https://www.healthline.com/health/acute-respiratory-distress-syndrome#symptoms for this information. Yep, breathlessness is not the only symptom of ARDS.

  • “labored and rapid breathing
  • muscle fatigue and general weakness
  • low blood pressure
  • discolored skin or nails
  • a dry, hacking cough
  • a fever
  • headaches
  • a fast pulse rate
  • mental confusion”

This is not looking good at all. I’m wondering how ALI is treated now. The American Lung Association at https://www.lung.org/lung-health-diseases/lung-disease-lookup/ards/ards-treatment-and-recovery was detailed in explaining.

Ventilator support

All patients with ARDS will require extra oxygen. Oxygen alone is usually not enough, and high levels of oxygen can also injure the lung. A ventilator is a machine used to open airspaces that have shut down and help with the work of breathing. The ventilator is connected to the patient through a mask on the face or a tube inserted into the windpipe.

Prone positioning

ARDS patients are typically in bed on their back. When oxygen and ventilator therapies are at high levels and blood oxygen is still low, ARDS patients are sometimes turned over on their stomach to get more oxygen into the blood. This is called proning and may help improve oxygen levels in the blood for a while. It is a complicated task and some patients are too sick for this treatment.

Sedation and medications to prevent movement

To relieve shortness of breath and prevent agitation, the ARDS patient usually needs sedation. Sometimes added medications called paralytics are needed up front to help the patient adjust to the ventilator. These medications have significant side effects and their risks and benefits must be continuously monitored.

Fluid management

Doctors may give ARDS patients a medication called a diuretic to increase urination in hopes of removing excess fluid from the body to help prevent fluid from building up in the lungs. This must be done carefully, because too much fluid removal can lower blood pressure and lead to kidney problems.

Extracorporeal membrane oxygenation (ECMO)

ECMO is a very complicated treatment that takes blood outside of your body and pumps it through a membrane that adds oxygen, removes carbon dioxide and then returns the blood to your body. This is a high-risk therapy with many potential complications. It is not suitable for every ARDS patient.”

Now that we understand what ALI/ARDS is, what – in heaven’s name – does it have to do with AKI?

“Renal failure is a frequent complication of ARDS, particularly in the context of sepsis. Renal failure may be related to hypotension, nephrotoxic drugs, or underlying illness. Fluid management is complicated in this context, especially if the patient is oliguric. Multisystem organ failure, rather than respiratory failure alone, is usually the cause of death in ARDS.”

Thank you Medscape at https://www.medscape.com/answers/165139-43289/why-is-renal-failure-a-frequent-complication-of-acute-respiratory-distress-syndrome-ards for the explanation.  I think a few definitions are in order to adequately understand this explanation.

“Sepsis refers to a bacterial infection in the bloodstream or body tissues. This is a very broad term covering the presence of many types of microscopic disease-causing organisms.

Hypotension is the medical term for low blood pressure.

Nephrotoxic is toxic, or damaging, to the kidney.

(Oligoric is the adjective meaning of or pertaining to oligoria.)

Oliguria or oliguresis is the noun meaning the excretion of an abnormally small volume of urine, often as the result of a kidney disorder.”

All the above definitions were paraphrased from The Free Dictionary by Farlex, Medical Dictionary.

You probably know more than you wanted to about the connection between Covid-19, your lungs, and your kidneys than you ever intended to find out by now. Don’t be frightened, but do wear your mask and continue to social distance. Oh, and don’t forget the hand sanitizer.

Until next week,

Keep living your life!

“klot” + “id” 

No, that’s not the result of misplacing my fingers on the keyboard. According to https://youglish.com/pronounce/clotted/english, this is the correct two syllable pronunciation of the word clotted. My all-time favorite dictionary, the Merriam-Webster, at https://www.merriam-webster.com/dictionary/clotted defines the adjective (word describing a noun) clotted as:

“1: a portion of a substance adhering together in a thick nondescript mass (as of clay or gum)

2 a: a roundish viscous lump formed by coagulation of a portion of liquid or by melting

b: a coagulated mass produced by clotting of blood”

You’re right – it’s the second definition we’ll be dealing with today. Why? A long-time reader was telling me about his blood clot when I suddenly realized I had no idea if there were any connection at all between Chronic Kidney Disease and blood clots.

As it turns out, there is.  The following is from the National Kidney Foundation at https://www.kidney.org/sites/default/files/Blood_Clots_And_CKD_2018.pdf:

“CKD may put you at higher risk for VTE. The reasons for this are not well understood. The connection may depend on what caused your CKD and how much kidney damage you have. No matter the reason, CKD may make it easier for your body to form blood clots. The risk for VTE is seen more often in people with nephrotic syndrome (a kidney problem that causes swelling, usually of the ankles, a high level of protein in the urine, and a low level of a protein called albumin in the blood).”

I have a question already. What is VTE? I found World Thrombosis Day’s explanation at www.worldthrombosisday.org › issue › vte the most helpful.

“Venous thromboembolism (VTE) is a condition in which a blood clot forms most often in the deep veins of the leg, groin or arm (known as deep vein thrombosis, DVT) and travels in the circulation, lodging in the lungs (known as pulmonary embolism, PE).”

How could I have CKD for over a dozen years and not know this? Many thanks to my reader and online friend for bringing it up. 

Well, it’s back to the beginning for us. How is VTE diagnosed? The Centers for Disease Control and Prevention (CDC) at www.cdc.gov › ncbddd › dvt › diagnosis-treatment was helpful here.

“Duplex ultrasonography is an imaging test that uses sound waves to look at the flow of blood in the veins. It can detect blockages or blood clots in the deep veins. It is the standard imaging test to diagnose DVT. A D-dimer blood test measures a substance in the blood that is released when a clot breaks up.”

Let’s take a closer look at the D-dimer blood test. That’s another new one for me. My old standby, MedlinePlus (This time at https://medlineplus.gov/lab-tests/d-dimer-test/.) offered the following which more than satisfactorily answered my question.

“A D-dimer test looks for D-dimer in blood. D-dimer is a protein fragment (small piece) that’s made when a blood clot dissolves in your body.

Blood clotting is an important process that prevents you from losing too much blood when you are injured. Normally, your body will dissolve the clot once your injury has healed. With a blood clotting disorder, clots can form when you don’t have an obvious injury or don’t dissolve when they should. These conditions can be very serious and even life-threatening. A D-dimer test can show if you have one of these conditions.”

By the way, MedlinePlus is part of the U.S. National Library of Medicine which, in turn, is part of the National Institutes of Health.

This brings me to another question. How would you or your doctor even know you may need this test?

“According to the Centers for Disease Control and Prevention (CDC), about half of people with DVT don’t have symptoms. Any symptoms that do occur will be in the affected leg or the area where the clot is found. Symptoms can include:

pain

redness of the skin

warmth of the skin

swelling of the area

If the clot moves into the lungs and you develop PE, you may have symptoms such as:

chest pain, which may get worse when you breathe deeply or cough

coughing

coughing up blood

dizziness or even fainting

rapid shallow breathing, or tachypnea

rapid heartbeat

irregular heartbeat

shortness of breath”

Thank you to Healthline at https://www.healthline.com/health/dvt-vs-pulmonary-embolism for the above information.

Now we know what VTE is, what symptoms you may experience, and the test to take to confirm that you do, indeed, have VTE. You know what comes next. How do we treat VTE once it’s confirmed?

These are some, but not all, of the treatments that may be recommended. I discovered them on WebMD’s site at https://www.webmd.com/dvt/what-is-venous-thromboembolism.

“Blood thinners. These drugs don’t break up the clot, but they can stop it from getting bigger so your body has time to break it down on its own. They include heparin, low-molecular-weight heparin, apixaban (Eliquis), edoxaban (Savaysa), rivaroxaban (Xarelto), and warfarin (Coumadin).

Clot-busting drugs. These medicines are injections that can break up your clot. They include drugs like tPA (tissue plasminogen activator).

Surgery. In some cases, your doctor may need to put a special filter into a vein, which can stop any future clots from getting to your lungs. Sometimes, people need surgery to remove a clot.

Even after you recover from a VTE and you’re out of the hospital, you’ll probably still need treatment with blood thinners for at least 3 months. That’s because your chances of having another VTE will be higher for a while.”

I’m still wondering how to avoid VTE. This is what The National Blood Clot Alliance at https://www.stoptheclot.org/learn_more/prevention_of_thrombosis/ suggested:

“Ask your doctor about need for ‘blood thinners’ or compression stockings to prevent clots, whenever you go to the hospital

Lose weight, if you are overweight

Stay active

Exercise regularly; walking is fine

Avoid long periods of staying still

Get up and move around at least every hour whenever you travel on a plane, train, or bus, particularly if the trip is longer than 4 hours

Do heel toe exercises or circle your feet if you cannot move around

Stop at least every two hours when you drive, and get out and move around

Drink a lot of water and wear loose fitted clothing when you travel

Talk to your doctor about your risk of clotting whenever you take hormones, whether for birth control or replacement therapy, or during and right after any pregnancy

Follow any self-care measures to keep heart failure, diabetes, or any other health issues as stable as possible”

And we have yet another reason to be extra cautious if you have CKD.

Until next week,

Keep living your life!

 

It Isn’t  Ain’t; It’s AIN.  

I’ll explain that in a minute, but first – on this Labor Day weekend – I want to thank all the readers who have liked individual blogs. These likes let me know I’m writing about topics that interest you.

Let’s turn to AIN now.  You know it’s not just a word, but an acronym. That’s a word formed by the initials of a term, like ASAP for as soon as possible. By the way, ‘nym’ means name, while ‘acr’ means height, summit, tip, top.  ‘O’ connects the two roots. So, we have the tip of the words or the first letters forming an acronym which becomes a recognized word. Thank you to my college course in Greek and Latin roots. I knew that would come on handy someday and it has again and again.

Well, what does AIN mean? It is the acronym for Allergic Interstitial Nephritis, which is a mouthful itself. ‘Allergic’ we get. That’s a common enough word. ‘Interstitial’, though? I remember the prefix (group of related words before the root word that changes its meaning) ‘inter’ means between, but between what? Merriam-Webster Dictionary at https://bit.ly/3h3cF0H, here we come.

asituated within but not restricted to or characteristic of a particular organ or tissue —used especially of fibrous tissue

 baffecting the interstitial tissues of an organ or part

I wonder if we’ll need both definitions. I think we need to be reminded of what nephritis is before we can tell. Again, I remember from that college course so very long ago (Funny what sticks in your mind, isn’t it?) that ‘itis’ means inflammation. We know from all the writings about Chronic Kidney Disease that ‘neph’ means kidneys. Putting these together, we have inflammation of the kidneys. Let’s take a look at my favorite dictionary again, just to be certain.

Yep, there we have it at www.merriam-webster/dictionary/nephritis:

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

How do you define the whole term? According the excerpt from Nancy A. Finnigan and Khalid Bashir’s book Statpearls on NCBI’s bookshelf at https://bit.ly/31ZTeS2,

“Allergic interstitial nephritis (AIN) is the most common form of acute interstitial nephritis. It is most often caused by exposure to a drug. AIN is often associated with an acute decline in renal function and may be associated with permanent renal insufficiency.”

Acute? Oh, yes. That’s means sudden. It’s the opposite of chronic, which means long term. Looks like we only needed the second dictionary definition of interstitial after all.

So, this kind of nephritis is usually caused by drugs? Which drugs? I went to UpToDate at https://bit.ly/3i4exHS for the answer:

“The most common drug causes of AIN now include …:

  • Nonsteroidalanti-inflammatoryagents (NSAIDs), including selective cyclooxygenase (COX)-2 inhibitors
  • Penicillinsand cephalosporins
  • Rifampin
  • Antimicrobial sulfonamides, including trimethoprim-sulfamethoxazole
  • Ciprofloxacin and,perhaps toa lesser degree, other quinolones
  • Diuretics, including loop diuretics such as furosemide and bumetanide, and thiazide-type diuretics
  • Cimetidine (only rare cases have been described with other H-2 blockers such as ranitidine) [24,25]
  • Allopurinol
  • Proton pump inhibitors (PPIs) such as omeprazole and lansoprazole [26-29]
  • Indinavir
  • 5-aminosalicylates (eg, mesalamine)”

There are some very common drugs on this list. As Chronic Kidney Disease patients, we are warned away from NSAIDS. I’ve been warned about Ciprofloxacin, too, and PPIs, but diuretics? Most of the other drugs we’d have to ask our doctors about when and if they’re prescribed. Then again, I ask my family doctor to check the effect of the drug on the kidneys when she prescribes a drug. She happily does so.

You should note that many of these drugs do not require a prescription. In that case, speak with your pharmacist about its possible effect on your kidneys before buying any over the counter drug. Another possibility is using Drugs.com or a similar website for possible effects on your kidneys before using any drugs.

What are the symptoms, if any, of AIN? Well, much like Chronic Kidney Disease, there are often no symptoms until it is quite advanced. Then you would notice the acute drop in kidney function. A blood test and urine test will help with the diagnosis, although the urine test will only show the presence of white blood cells. That indicates an infection. Sometimes a kidney biopsy is required to diagnose AIN.

And now the biggie: what do you do if you develop AIN? You stop the medication. It’s common sense. Your doctor will probably suggest that once it’s been determined you have allergic interstitial nephritis. Remember though, there are other causes of AIN such as infections and/or autoimmunity.

Topic switch: While I’ve been laboring over this blog, I’ve also been thinking about the fact that today is Labor Day in the United States. Coming from a union family, I thought I’d tell you a little bit about Labor Day that you may not know.

This, and more information about Labor Day, may be found at https://bit.ly/3jPeaRR

“In the late 1800s, the state of labor was grim as U.S. workers toiled under bleak conditions: 12 or more hour workdays; hazardous work environments; meager pay. Children, some as young as 5, were often fixtures at plants and factories.

The dismal livelihoods fueled the formation of the country’s first labor unions, which began to organize strikes and protests and pushed employers for better hours and pay. Many of the rallies turned violent.

On Sept. 5, 1882 — a Tuesday — 10,000 workers took unpaid time off to march in a parade from City Hall to Union Square in New York City as a tribute to American workers. Organized by New York’s Central Labor Union, It [sic]was the country’s first unofficial Labor Day parade. Three years later, some city ordinances marked the first government recognition, and legislation soon followed in a number of states.”

As many of you already know, my grandfather was an organizer for the Brass Workers Union. Many a time he’d disappear. He was jailed for his activities, but that didn’t stop him.

As you labor to avoid AIN and keep your kidneys functioning properly, enjoy the holiday weekend.

Until next week,

Keep living your life!

The Dye is Cast

Bet you think I made a spelling error in the title. If you’re thinking of the original phrase, you’re right. In that one, it’s spelled ‘die’. Here’s where it came from according to Wikipedia at https://en.wikipedia.org/wiki/Alea_iacta_est:

Alea iacta est (‘The die has been cast’) is a variation of a Latin phrase (iacta alea est [ˈjakta ˈaːlɛ.a ˈɛst]) attributed by Suetonius to Julius Caesar on January 10, 49 BCE, as he led his army across the Rubicon river in Northern Italy…. The phrase, either in the original Latin or in translation, is used in many languages to indicate that events have passed a point of no return. It is now most commonly cited with the word order changed (‘Alea iacta est’) rather than in the original phrasing….”

Uh-oh, there is in existence a phrase just like the title of today’s blog. It means the tint has been applied and can’t be changed or something like that.That this phrase with this spelling exists was a bit surprising. What I meant in the title is the dye used in contrast CTs.

Let’s back up just a bit so we can explain what a CT is. The Mayo Clinic at https://mayocl.in/3jujqdk tells us:

A computerized tomography (CT) scan combines a series of X-ray images taken from different angles around your body and uses computer processing to create cross-sectional images (slices) of the bones, blood vessels and soft tissues inside your body. CT scan images provide more-detailed information than plain X-rays do.”

I’ll be having one with contrast this afternoon. You know we, as CKD patients, have been warned not to allow that contrast into our bodies. Let’s find out why and then I’ll tell you why I am allowing it. The contrast is the dye in the title of today’s blog.

“In a CT scan, dense substances like bones are easy to see. But soft tissues don’t show up as well. They may look faint in the image. To help them appear clearly, you may need a special dye called a contrast material. They block the X-rays and appear white on the scan, highlighting blood vessels, organs, or other structures.Contrast materials are usually made of iodine or barium sulfate. You might receive these drugs in one or more of three ways:

  • Injection: The drugs are injected directly into a vein. This is done to help your blood vessels, urinary tract, liver, or gallbladder stand out in the image.
  • Orally: Drinking a liquid with the contrast material can enhance scans of your digestive tract, the pathway of food through your body.
  • Enema: If your intestines are being scanned, the contrast material can be inserted in your rectum.

After the CT scan, you’ll need to drink plenty of fluids to help your kidneys remove the contrast material from your body.”Thank you, WebMD at https://www.webmd.com/cancer/what-is-a-ct-scan#2 for the above information.

Of course, now we need to know why we shouldn’t be having this contrast material. Radiology Affiliates Imagining at https://4rai.com/blog/can-contrast-hurt-my-kidneys, a new site for me but one that seems very thorough, explains that we just don’t know for sure:

“…. Unhealthy kidneys, though, may be slower and less efficient when it comes to clearing the contrast from the blood. While the medical community has not yet determined exactly how contrast dye causes kidney problems, they think it has to do with this slow clearance of the dyes from the body.”

Well, what problems can contrast dye cause for our kidneys? I went right to the National Kidney Foundation at https://bit.ly/2YL7RXv  for an answer to this question

“What is Contrast Induced Nephropathy (CIN)?

CIN is a rare disorder and occurs when kidney problems are caused by the use of certain contrast dyes. In most cases contrast dyes used in tests, such as CT (computerized tomography) and angiograms, have no reported problems. About 2 percent of people receiving dyes can develop CIN. However, the risk for CIN can increase for people with diabetes, a history of heart and blood diseases, and chronic kidney disease (CKD)….The risk of CIN in people with both CKD and diabetes is 20 to 50 percent.

CIN is associated with a sharp decrease in kidney function over a period of 48-72 hours. The symptoms can be similar to those of kidney disease, which include feeling more tired, poor appetite, swelling in the feet and ankles, puffiness around the eyes, or dry and itchy skin. In many cases, CIN is reversible and people can recover. However, in some cases, CIN can lead to more serious kidney problems and possible heart and blood vessel problems

What is Nephrogenic Systemic Fibrosis (NSF)?

NSF is a rare but serious disease affecting skin and other organs that has been found in some patients with advanced CKD after exposure to gadolinium-containing contrast dyes that are used in magnetic resonance imaging (MRI). NSF appears to affect about 4 percent of patients with advanced CKD. People with acute kidney injury (AKI) are also at higher risk. NSF has not been reported in people with mild kidney damage or normal kidney function.

NSF can be painful, debilitating, or even fatal. Symptoms and signs of NSF can include burning and itching of the skin, red or dark patches on the skin, joint stiffness, or muscle weakness. The disease can develop within 24 hours up to around 3 months….  delay in excretion [of this drug] is thought to be one the main reasons why NSF may happen.”

Notice that both possible effects of using contrast dye with kidney disease are rare.

So why am I having the contrast dye when I’ve been advised not to? My oncology team needs to see if the cancer has returned and, if it has, how badly. I told them at the beginning of my treatment to spare my kidneys as much as possible. But, in this case, I don’t want them to spare my kidneys so much that I end up dead of cancer.

There are two kinds of dye used, one less harmful to the kidneys than the other. I believe that’s the one that is used on me. It is also reduced in order to save me from any possible further kidney damage. Most importantly, my creatinine level is measured before administering the contrast dye. After a year and a half of this, my kidneys are doing just as well as they were doing before I started allowing contrast dye.

This is my story; remember, everyone is different and talk this over with your nephrologist before you agree to contrast dye. My nephrologist and I agreed that I needed to be alive more than I needed to save my kidneys.

Until next week,

Keep living your life!

We Know They Do, But How?

  • “aluminum- and calcium-containing antacids
  • anticonvulsants
  • calcium channel blockers
  • diuretics
  • iron supplements
  • narcotic pain medications
  • medicines used to treat Parkinson’s disease”

I ask you what do these drugs have in common. Healthline at https://www.healthline.com/health/what-does-constipation-feel-like#takeaway tells us they all may cause constipation.

This is one of those topics we don’t like to talk about, but have probably each experienced at one time or another. There are other causes of constipation, but today, we’ll stick with that caused by drugs. Mind you, we’re not talking about party drugs. Rather, it’s the drugs that are prescribed for you that may cause constipation which I’m writing about.

Well, how do you know if you have constipation? The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/constipation/symptoms-causes/syc-20354253 explains:

  • “Passing fewer than three stools a week
  • Having lumpy or hard stools
  • Straining to have bowel movements
  • Feeling as though there’s a blockage in your rectum that prevents bowel movements
  • Feeling as though you can’t completely empty the stool from your rectum
  • Needing help to empty your rectum, such as using your hands to press on your abdomen and using a finger to remove stool from your rectum”

According to the International Foundation of Gastrointestinal Disorders at https://www.iffgd.org/diet-treatments/medications/medications-that-can-affect-colonic-function.html,

“Constipation can be caused by a variety of medications. These medications affect the nerve and muscle activity in the large intestine (colon) and may also bind intestinal liquid. This may result in slowed colonic action (slow and/or difficult passing of stool).”

Let’s see if we can get more specific information on how constipation works. I went to Medscape at https://emedicine.medscape.com/article/184704-overview#a4 and discovered there are quite a few different kinds of constipation:

“The etiology [Gail here. That means the cause of the disease.] of constipation is usually multifactorial, but it can be broadly divided into two main groups …: primary constipation and secondary constipation.

Primary constipation

Primary (idiopathic, functional) constipation can generally be subdivided into the following three types:

Normal-transit constipation (NTC)

Slow-transit constipation (STC)

Pelvic floor dysfunction (ie, pelvic floor dyssynergia)

NTC is the most common subtype of primary constipation. Although the stool passes through the colon at a normal rate, patients find it difficult to evacuate their bowels. Patients in this category sometimes meet the criteria for IBS with constipation (IBS-C). The primary difference between chronic constipation and IBS-C is the prominence of abdominal pain or discomfort in IBS. Patients with NTC usually have a normal physical examination.

STC is characterized by infrequent bowel movements, decreased urgency, or straining to defecate. It occurs more commonly in female patients. Patients with STC have impaired phasic colonic motor activity. They may demonstrate mild abdominal distention or palpable stool in the sigmoid colon.

Pelvic floor dysfunction is characterized by dysfunction of the pelvic floor or anal sphincter. Patients often report prolonged or excessive straining, a feeling of incomplete evacuation, or the use of perineal or vaginal pressure during defecation to allow the passage of stool, or they may report digital evacuation of stool.”

We won’t be dealing with secondary constipation today since that doesn’t include drugs in its etiology.

What does happen in your body during constipation? This is what the Cleveland Clinic at https://my.clevelandclinic.org/health/diseases/4059-constipation has to say:

“Constipation happens because your colon absorbs too much water from waste (stool/poop), which dries out the stool making it hard in consistency and difficult to push out of the body.

To back up a bit, as food normally moves through the digestive tract, nutrients are absorbed. The partially digested food (waste) that remains moves from the small intestine to the large intestine, also called the colon. The colon absorbs water from this waste, which creates a solid matter called stool. If you have constipation, food may move too slowly through the digestive tract. This gives the colon more time – too much time – to absorb water from the waste. The stool becomes dry, hard, and difficult to push out.”

Imagine, drugs to improve your health taxing your health. Luckily, since you need to take the prescribed drugs to alleviate whatever your medical diagnosis is, there are methods to relieve your constipation. Here’s WebMD’s (https://www.webmd.com/digestive-disorders/constipation-relief-tips) advice:

“One way to keep things moving is by getting enough fiber in your diet, which makes stool bulkier and softer so it’s easier to pass. Gradually increase the amount of fiber in your diet until you’re getting at least 20 to 35 grams of fiber daily.

Good fiber sources include:

  • Bran and other whole grains found in cereals, breads, and brown rice
  • Vegetables such as Brussels sprouts, carrots, and asparagus
  • Fresh fruits, or dried fruits such as raisins, apricots, and prunes”
  • Beans

While you’re having an issue with constipation, limit foods that are high in fat and low in fiber, like cheese and other dairy products, processed foods, and meat. They can make constipation worse.

And on the subject of diet, water is important for preventing constipation, too. Try to drink at least 8 glasses of water a day.

Also, exercise regularly. Moving your body will keep your bowels moving, too.”

Wait a minute. We’re Chronic Kidney Disease patients. That’s means some of the foods listed above may not be allowed on our renal diets. For instance, dried raisin, apricots, and prunes are too high in potassium for CKD patients. You need to speak with your renal dietitian before changing your diet.

As Benjamin Franklin stated, “an ounce of prevention is worth a pound of cure.” Let’s see what we can find on prevention.

  • Increasing your fiber intake: Fiber-rich foods, such as fruits, vegetables and whole grains, all help improve gut function. If you have bowel sensitivity, you’ll want to avoid high-fructose fruits, such as apples, pears and watermelon, which can cause gas.
  • Getting more exercise: Regular exercise can help keep stool moving through the colon.
  • Drinking more water: Aim for eight glasses daily, and avoid caffeine, as it can be dehydrating.
  • Go when you feel like it: When you feel the urge to go, don’t wait.”

Thank you to Johns Hopkins Medicine at https://www.hopkinsmedicine.org/health/conditions-and-diseases/constipation-causes-and-prevention-tips for this information. Will you look at that? Prevention methods for constipation are almost the same as how to treat constipation. Better get started, folks.

Until next week,

Keep living your life!

How Sweet It Isn’t

Hello again. Last week when I was writing about Bipolar Disorder and Chronic Kidney Disease, I mentioned nephrogenic diabetes insipidus. During the week I realized how little I know about that.

Let’s start by going back and reviewing what I wrote last week:

“What is nephrogenic diabetes insipidus?
The most common problem from taking lithium is a form of diabetes due to kidney damage called nephrogenic diabetes insipidus. This type of diabetes is different than diabetes mellitus caused by high blood sugar. In nephrogenic diabetes insipidus, the kidneys cannot respond to anti-diuretic hormone (ADH), a chemical messenger that controls fluid balance. This results in greater than normal urine out-put and excessive thirst. It can be hard to treat nephrogenic diabetes insipidus.”

Frankly, that’s not enough information for me, although it’s pretty clear. Former English teacher here. Let’s take a look at the words themselves. Keep in mind, this is what I learned along the years.

Nephro = kidneys

Genic = Beginning in

So we know this disease begins in the kidneys. And diabetes? According to Michigan State University at https://www.canr.msu.edu/news/how_diabetes_got_its_name,

“The ancient Greek word for diabetes means, ‘passing though; a large discharge of urine.’ The meaning is associated with frequent urination, which is a symptom of diabetes.”

And finally insipidus. I found myself turning to Wikipedia at https://en.wikipedia.org/wiki/Diabetes_insipidus#:~:text=”Insipidus”%20comes%20from%20Latin%20language,or%20zest%3B%20not%20tasty for help with this.

” ‘Insipidus’ comes from Latin language insipidus (tasteless), from Latin: in- ‘not’ + sapidus ‘tasty’ from sapere ‘have a taste’ — the full meaning is ‘lacking flavor or zest; not tasty’.”

This one I didn’t quite get. Back to the above link to figure out what tasteless has to do with this disease.

“Application of this name to DI arose from the fact that diabetes insipidus does not cause glycosuria (excretion of glucose into the urine).”

Ah, so the urine is not sweet. Reminder: Diabetes can be diagnosed by the doctor tasting the urine. While this was more common in the 1600s, I have read about doctors tasting urine for diabetes more recently and even currently. If the urine is sweet, diabetes is present.

This is interesting. I’d never considered a form of diabetes that didn’t deal with blood glucose, which may also be called blood sugar, so sweet. Of course, I then began to wonder if taking lithium was the only way to develop this disease. The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/diabetes-insipidus/symptoms-causes/syc-20351269#:~:text=Nephrogenic%20diabetes%20insipidus%20occurs%20when,or%20a%20chronic%20kidney%20disorder was quite a bit of help here:

“Nephrogenic diabetes insipidus occurs when there’s a defect in the kidney tubules — the structures in your kidneys that cause water to be excreted or reabsorbed. This defect makes your kidneys unable to properly respond to ADH.

The defect may be due to an inherited (genetic) disorder or a chronic kidney disorder. Certain drugs, such as lithium or antiviral medications such as foscarnet (Foscavir), also can cause nephrogenic diabetes insipidus.”

This is a lot of new information to understand unless we get more help. Let’s take a look at kidney tubules now. I turned to my old favorite Healthline at https://www.healthline.com/health/human-body-maps/kidney#nephrons and found the following:

“Each tubule has several parts:

  • Proximal convoluted tubule. This section absorbs water, sodium, and glucose back into the blood.
  • Loop of Henle. This section further absorbs potassium, chloride, and sodium into the blood.
  • Distal convoluted tubule. This section absorbs more sodium into the blood and takes in potassium and acid.

By the time fluid reaches the end of the tubule, it’s diluted and filled with urea. Urea is byproduct of protein metabolism that’s released in urine.”

That makes sense, but what about this ADH? What is that?  My Health Alberta Ca at https://myhealth.alberta.ca/Health/pages/conditions.aspx?hwid=hw211268 tells us:

“Antidiuretic hormone (ADH) is a chemical produced in the brain that causes the kidneys to release less water, decreasing the amount of urine produced. A high ADH level causes the body to produce less urine. A low level results in greater urine production.

Normally, the amount of ADH in the body is higher during the night. This helps prevent urination while you are sleeping. But if the levels of ADH remain low during the night, the body will produce large amounts of urine, so urination during the night is more likely.”

We know how you can develop nephrogenic diabetes insipidus, but how do you treat it once you’ve been diagnosed? WebMD at https://www.webmd.com/diabetes/guide/nephrogenic-diabetes-insipidus-symptoms-causes-and-treatments offers us the following:

“If a drug like lithium is responsible, switching medicines might improve nephrogenic diabetes insipidus.

Most adults with nephrogenic diabetes insipidus are able to keep up with fluid losses by drinking water. For some people, though, the symptoms of near-constant thirst and urination can become intolerable. Some treatments can reduce the symptoms of nephrogenic diabetes insipidus, at least somewhat:

All adults and children with nephrogenic diabetes insipidus should take frequent bathroom breaks. This helps to avoid over-distending the bladder, which can cause long-term problems, though rarely.

The most important treatment for nephrogenic diabetes insipidus is to ensure constant access to lots of water. Not keeping up with fluid losses can lead to dehydration or electrolyte imbalances, which can sometimes be severe. Seek medical help if symptoms don’t improve after rehydrating, eating fresh fruit, and taking a multivitamin.”

Now, the biggie…. Is this rare disease curable? Unfortunately it isn’t, although,

“For individuals with acquired NDI treating the underlying cause (e.g., correcting metabolic imbalances or discontinuing drug use) can reverse the kidneys resistance to vasopressin. [Gail here again: Vasopressin is another name for ADH as far as I can tell.] However, this reversal may take weeks. In some cases caused by the use of drugs such as lithium, it may take years for the kidneys to respond to vasopressin again or it can become irreversible.”

Thank you to National Organization for Rare Diseases (NORD) at https://rarediseases.org/rare-diseases/nephrogenic-diabetes-insipidus/ for the above information.

I feel like I’ve been down the rabbit hole with Alice with all this new information about a rare disease that your already existing kidney disease may cause. Hopefully, you won’t be one of its victims.

Until next week,

Keep living your life!

Bipolar Disorder and Chronic Kidney Disease

It turns out I know more people with bipolar disorder than I’d thought. Of course, that led me to wonder again what, if anything, this might have to do with CKD. That’s just the way my mind works. Everything – and I do mean everything – leads back to CKD for me. So, as usual, I started asking them questions and poking around on the internet.

It seems that most of them are taking lithium to help control the bipolar disorder. Okay, I’ll bite: what is lithium? Drugs.com at https://www.drugs.com/lithium.html has quite a lot to say about this drug, but I’ll start with the basic definition:

Lithium affects the flow of sodium through nerve and muscle cells in the body. Sodium affects excitation or mania.

Lithium a mood stabilizer that is a used to treat or control the manic episodes of bipolar disorder (manic depression). Manic symptoms include hyperactivity, rushed speech, poor judgment, reduced need for sleep, aggression, and anger.

Lithium also helps to prevent or lessen the intensity of manic episodes.”

Notice sodium is mentioned. Keep that in mind while we backtrack for a definition of bipolar disorder. It seems I jumped right in without giving you some of the necessary background information. I’ll rectify that right now.

The National Institute of Mental Health at https://www.nimh.nih.gov/health/topics/bipolar-disorder/index.shtml tells us:

“Bipolar disorder (formerly called manic-depressive illness or manic depression) is a mental disorder that causes unusual shifts in mood, energy, activity levels, concentration, and the ability to carry out day-to-day tasks.

There are three types of bipolar disorder. All three types involve clear changes in mood, energy, and activity levels. These moods range from periods of extremely ‘up,’ elated, irritable, or energized behavior (known as manic episodes) to very ‘down,’ sad, indifferent, or hopeless periods (known as depressive episodes). Less severe manic periods are known as hypomanic episodes.

  • Bipolar I Disorder— defined by manic episodes that last at least 7 days, or by manic symptoms that are so severe that the person needs immediate hospital care. Usually, depressive episodes occur as well, typically lasting at least 2 weeks. Episodes of depression with mixed features (having depressive symptoms and manic symptoms at the same time) are also possible.
  • Bipolar II Disorder— defined by a pattern of depressive episodes and hypomanic episodes, but not the full-blown manic episodes that are typical of Bipolar I Disorder.
  • Cyclothymic Disorder (also called Cyclothymia)— defined by periods of hypomanic symptoms as well as periods of depressive symptoms lasting for at least 2 years (1 year in children and adolescents). However, the symptoms do not meet the diagnostic requirements for a hypomanic episode and a depressive episode.

Sometimes a person might experience symptoms of bipolar disorder that do not match the three categories listed above, which is referred to as ‘other specified and unspecified bipolar and related disorders’ .”

In the July 3rd, 2017, blog, I wrote about those who already have CKD and then develop bipolar disorder.

“Kidney.org at https://www.kidney.org/atoz/content/lithium has me downright frightened for my friend…

“How does lithium cause kidney damage?
Lithium may cause problems with kidney health. Kidney damage due to lithium may include acute (sudden) or chronic (long-term) kidney disease and kidney cysts. The amount of kidney damage depends on how long you have been taking lithium. It is possible to reverse kidney damage caused by lithium early in treatment, but the damage may become permanent over time.

What is nephrogenic diabetes insipidus?
The most common problem from taking lithium is a form of diabetes due to kidney damage called nephrogenic diabetes insipidus. This type of diabetes is different than diabetes mellitus caused by high blood sugar. In nephrogenic diabetes insipidus, the kidneys cannot respond to anti-diuretic hormone (ADH), a chemical messenger that controls fluid balance. This results in greater than normal urine out-put and excessive thirst. It can be hard to treat nephrogenic diabetes insipidus.”

As we can see, this is not the first time I’ve written about a dual diagnose of these two diseases – one mental, one physical – and how they affect each other. One of the interesting facts I found is that you need to tell your doctor if you have kidney disease when he prescribes lithium. None of my friends has CKD yet, although one is under surveillance (if that’s the proper word) since she’s having some decline in her eGFR.

Remember I asked you to keep that sodium reference in mind? One problem with lithium is that it requires you to include sodium in your diet. As a CKD patient, you’re asked to limit your sodium intake. You can’t do both at once. This is from WebMD at https://www.webmd.com/bipolar-disorder/guide/bipolar-disorder-lithium#2:

“Tell your doctor about history of cancerheart diseasekidney diseaseepilepsy, and allergies. Make sure your doctor knows about all other drugs you are taking. Avoid products that are low in sodium (salt) since a low sodium diet can lead to excessively high lithium levels.

So what can you do to protect your kidneys if you must take lithium for your mental health? This is what Psychiatric Times at https://www.psychiatrictimes.com/view/6-ways-protect-kidneys-while-prescribing-lithium has to say about the subject:

Tip 1. Avoid toxicity

The link between lithium and renal dysfunction may be explained by exposure to toxic lithium levels. Toxic levels kill renal cells, and that damage builds up every time the level rises above the toxic line….

Tip 2. Keep the level low

Keeping the lithium level as low as possible can prevent renal impairment. The ideal level needs to be personalized and tends to fall with age….

Tip 3. Dose lithium once a day

Dosing lithium once in the evening reduces the risk of renal problems….

If high serum levels are needed to treat active mania, dosing twice a day may be necessary to avoid toxic peaks. The line of toxicity is different for each patient because it’s defined by symptoms.…

Tip 4. Drinking and urinating too much

Polyuria and polydipsia are common adverse effects of lithium (30% to 80%), and they are not always benign. When severe, they may indicate nephrogenic diabetes insipidus (NDI), which means that changes in the renal tubules are impeding the kidneys ability to concentrate the urine. Those changes raise the risk of future renal impairments.

Besides stopping lithium, the main treatment for NDI is amiloride, a potassium sparing diuretic (5 mg po qd). Amiloride may prevent further renal problems by reducing fibrotic changes in the kidneys…. This medication is best managed through consultation with the medical team because it carries a risk of hyperkalemia, particularly in patients with renal insufficiency or diabetes.

Tip 5. Consider N-Acetylcysteine

N-Acetylcysteine (NAC) is an antioxidant that can protect and even reverse renal toxicity, including toxicity from lithium…. NAC is part of a healthy diet, and the capsule form is safe, well-tolerated (the main risk is constipation), and inexpensive. Sounds like a winner, but there is one catch. The renal studies…were all done in animals.

However, there is another reason to use NAC in bipolar disorder. This supplement is effective for bipolar depression in some, but not all, studies… and those benefits are more pronounced in the medically ill….

The dose in bipolar disorder (2000 mg/day) is about twice the amount that was used for renal protection (10 mg/kg)….

Tip 6. Measure

Renal function should be monitored every 3 to 6 months on lithium. Older patients benefit from more frequent monitoring, as do those with a history of toxicity, high serum levels, or drug interactions. Creatinine is usually sufficient, but a more accurate measure of renal function is the estimated glomerular filtration rate (eGFR)….

Laboratory changes that should prompt a nephrology consult include:

  • eGFR < 30 ml/min/1.73m2
  • Creatinine ≥ 1.5 mg/dL
  • A decline of eGFR by more than 4 ml/min/1.73m… per year….”

There’s more, much more, on this site if you’re interested.

Until next week,

Keep living your life!

 

A Different Kind of App  

Periodically for the last decade, I’ve written about apps that could help us manage our Chronic Kidney Disease. They would be those with electrolyte counters, portion counters, GFR calculators, and even calorie counters or exercise counters. They were helpful. Some still exist; some have gone by the wayside.

In recent years, I’ve been vocal about the necessity for CKD patients to understand what our disease is, how it came to be, and what we might do about it. This is different from wanting people to be aware of CKD. My contention is that the educated patient is the one most able to help him or herself.

Responsum for CKD does just that, but I’ll let them explain their app themselves. This is from their April 28th blog at https://responsumhealth.com/great-news-for-the-ckd-community/.

“I have great news to share with Responsum Health’s extended family of supporters and everyone around the world whose lives are affected by kidney disease. Responsum Health, with support from Otsuka Pharmaceutical, is launching a new platform and app designed specifically for people with kidney disease, including chronic kidney disease (CKD)—a condition that affects 37 million Americans.

Responsum for CKD represents our company’s second disease-specific platform—the first being Responsum for PF—and includes some amazing new features. These include a translation function into seven languages and a dynamic social wall called Community Chat, which automatically suggests articles and resources based upon each comment or entry. Just like with pulmonary fibrosis, Responsum for CKD will be available as a free web-based platform and a mobile app for iOS and Android.

We’ve recruited an all-star Content Advisory Council made up of some of the top specialists in CKD to serve as our content validators. Instead of partnering with a specific patient advocacy group to vet our content, we chose this approach to ensure that the platform is free of commercial bias. We will roll out the names of our esteemed council alongside the app launch.

To the CKD community, Responsum Health is on the way! We can’t wait to serve you, join you, learn from you, and listen to you.

Let’s get started!

Andy Rosenberg
Founder and CEO, Responsum Health

Perhaps we could use a bit more information. Let’s try their May 5th press release at https://responsumhealth.com/press-and-media/responsum-health-launches-innovative-kidney-disease-information-platform/.

“Responsum Health Launches Innovative Kidney Disease Information Platform
New technology supports patients, families, caregivers, and healthcare professionals

​[WASHINGTON, D.C., May 28 2020] — Today, Responsum Health (Responsum), an innovative developer of personalized patient apps and chronic disease knowledge communities, with support from Otsuka Pharmaceutical, a global healthcare company, announced the launch of an online connection and knowledge platform for patients with kidney disease, such as chronic kidney disease (CKD), a condition that affects an estimated 37 million Americans. The platform, called Responsum for CKD, can be accessed for free via web browser or mobile app.

Designed to meet the needs of patients, families, caregivers, and healthcare professionals, Responsum for CKD offers a number of informational and community-oriented features. At its core, Responsum replaces unreliable web aggregators and social sites by providing patients and caregivers with a customized Newsfeed that has easy-to-read summaries of important kidney health news items. All of the information found on Responsum’s platforms is written by professional health writers and vetted by a team of researchers under the guidance of an advisory council, which is made up of leading kidney health experts.

Other features include a moderated social wall to serve as a community chat room and the Patient One-Sheet, which allows patients to easily collect, download, print, and share their key medical information. Patients will also have access to a robust collection of trusted patient support links.

“We are grateful that Otsuka is willing to support our mission to educate, support, and empower patients with chronic conditions through our unique approach to providing patients with the information they need to drive better outcomes,” said Andrew Rosenberg, founder of Responsum Health. “By working with recognized leaders from the patient advocacy community, we have created a trusted online platform that fills a vital information gap—while simultaneously creating an authentic, welcoming online community for people with kidney disease.”

About Responsum Health

Responsum Health’s mission is to build and support online knowledge communities for chronic disease patients. The company offers a free, revolutionary patient engagement platform that monitors, searches, and curates the Internet to generate a personalized news feed of article summaries, which are vetted by Responsum’s patient group partners. Responsum wraps the news feed into a comprehensive platform that enables patients to comment on and rate the articles, as well as share them with their professional care team and loved ones. Responsum also enables patients to better organize their health information, find local patient support groups and services, and support one another through a moderated, disease-specific social wall.”

The one thing that has been missing from other CKD apps is the education. I write to help people become aware of CKD and maybe understand a little bit of what affects you as a CKD patient. Responsum has articles in real time, so to speak. What I mean by that is if you’re interested in potassium and ask a question in the community about it, you also have articles attached that will explain more about your topic: no searching, no delay, just click on the upper right hand corner. How marvelous.

I think I’ve mentioned that I’ve been involved in what we used to call think tanks about what CKD patients need. My answer has always been education… and what could be better than immediate education? The one sheet with your medical information is also a boon, but not specific to only this app.

But the community with instant articles about your topic? Priceless. I would say that it’s free is also priceless, but that’s a little bit obvious. Do I recommend this app? Yes. Do I use this app? Yes… and if asked my opinion, I would say you should use it, too. The key to our kidney health just may be self-education.

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!

Two or More

Time for another reader question, but first, let’s pay attention to what day today is. Many people see today as the day for bar-b-ques or backyard ball games (or, at least, they did before Covid 19). When I married Bear a little more than seven years ago, he explained about Memorial Day. I knew it was to honor those who died protecting us, but it was so much more meaningful when explained by a veteran… someone who didn’t die protecting us and lived on to meet me and marry me. So give some quiet thoughts to these men and woman today, will you?

Now, the question. This reader has both lupus like immune mediated glomerular nephritis and Wegeners vasculitis with kidney involvement. Her question is how does she handle both?  And, here I thought I had it bad with pancreatic cancer (now gone), Chronic Kidney Disease, diabetes, and a whole host of what I consider lesser diseases!

Starting slowly is a must here since I am like a fish out of water with these two diseases. According to the MayoClinic at https://www.mayoclinic.org/diseases-conditions/granulomatosis-with-polyangiitis/symptoms-causes/syc-20351088,

”Granulomatosis with polyangiitis is an uncommon disorder that causes inflammation of the blood vessels in your nose, sinuses, throat, lungs and kidneys.

Formerly called Wegener’s granulomatosis, this condition is one of a group of blood vessel disorders called vasculitis. It slows blood flow to some of your organs. The affected tissues can develop areas of inflammation called granulomas, which can affect how these organs work.

Early diagnosis and treatment of granulomatosis with polyangiitis might lead to a full recovery. Without treatment, the condition can be fatal.”

Whoa! Not good. Let’s see how it’s treated. The Cleveland Clinic at https://my.clevelandclinic.org/health/diseases/4757-granulomatosis-with-polyangiitis-gpa-formerly-called-wegeners/management-and-treatment tells us,

“People with GPA who have critical organ system involvement are generally treated with corticosteroids [Gail here: commonly just called steroids] combined with another immunosuppressive medication such as cyclophosphamide (Cytoxan ®) or rituximab (Rituxan®). In patients who have less severe GPA, corticosteroids and methotrexate can be used initially. The goal of treatment is to stop all injury that is occurring as a result of GPA. If disease activity can be completely ‘turned off,’ this is called ‘remission.’ Once it is apparent that the disease is improving, doctors slowly reduce the corticosteroid dose and eventually hope to discontinue it completely. When cyclophosphamide is used, it is only given until the time of remission (usually around 3 to 6 months), after which time it is switched to another immunosuppressive agent, such as methotrexate, azathioprine (Imuran®), or mycophenolate mofetil (Cellcept®) to maintain remission. The treatment duration of the maintenance immunosuppressive medication may vary between individuals. In most instances, it is given for a minimum of 2 years before consideration is given to slowly reduce the dose toward discontinuation.”

Okay, got it. Now let’s take a look at lupus like immune mediated glomerular nephritis. MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=8064 reminds us about lupus:

Lupus: 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, heartlungs, kidneys, joints, and nervous system. The first symptom is a red (or dark), scaly rash on the nose and cheeks, often called a butterfly rash because of its distinctive shape. As inflammation continues, scar tissue may form, including keloid scarring in patients prone to keloid formation. The cause of lupus is unknown, although heredity, viruses, ultraviolet light, and drugs may all play a role. Lupus is more common in women than in men, and although it occurs in all ethnic groups, it is most common in people of African descent. Diagnosis is made through observation of symptoms, and through testing of the blood for signs of autoimmune activity. Early treatment is essential to prevent progression of the disease. A rheumatologist can provide treatment for lupus, and this treatment has two objectives: treating the difficult symptoms of the disease and treating the underlying autoimmune activity. It may include use of steroids [Gail here: Remember they’re used in treating this reader’s other disease, too.] and other anti-inflammatory agents, antidepressants and/or mood stabilizers, intravenous immunoglobulin, and, in cases in which lupus involves the internal organs, chemotherapy.

But our reader has lupus LIKE immune mediated glomerular nephritis, so she may need to deal with the symptoms, but not the treatment. Wikipedia at https://en.wikipedia.org/wiki/Immune-mediated_inflammatory_diseases informs us,

“An immune-mediated inflammatory disease (IMID) is any of a group of conditions or diseases that lack a definitive etiology, but which are characterized by common inflammatory pathways leading to inflammation, and which may result from, or be triggered by, a dysregulation of the normal immune response. All IMIDs can cause end organ damage, and are associated with increased morbidity and/or mortality.”

That’s as close as I could get to the definition of immune mediated.  We know that glomerular means of or about the glomerulus. Dictionary.com at https://www.dictionary.com/browse/glomerular helped me out here:

“Also called Malpighian tuft. a tuft of convoluted capillaries in the nephron of a kidney, functioning to remove certain substances from the blood before it flows into the convoluted tubule.”

And nephritis? After a decade of writing this blog, we probably all know that’s an inflammation of the nephrons.

Let’s combine the pieces to see what we get.  The nephron’s glomeruli are inflamed in the same way lupus inflames the organs. Remember that GPA also causes inflammation. (By the way, this is the perfect point in the blog to remind you I am not a doctor and have never claimed to be one.)

But how is it treated? Here’s where I admit defeat. There is quite a bit of information available on Lupus, Lupus Nephritis, and the like. But I could not find anything that includes ‘Lupus like.’

The commonality between the two diseases seems to be inflammation. But isn’t that at the root of all Chronic Kidney Disease? I admit to being surprised twice while writing this particular blog:

  • GPA was called by its older name by the doctor.
  • The dearth of treatment information for lupus like immune mediated glomerular nephritis.

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!

Saving CKD Lives

Last week, I wrote about Covid-19 and a little about precautions explaining why we – as Chronic Kidney Disease patients – need to take extra care. A reader in Ireland was shocked that this was all we had in the way of protecting ourselves (as much as possible) from contacting the virus here in the United States. The precautions weren’t that much different than the precautions for everyone else.

There are a few things going on here. First is that we have no leadership from Mr. Trump who seems to have decided this is not his responsibility. That leaves us with the governors of each of the fifty United States and, in some cases, the mayors of individual cities in each of these states to lead us. They may have very different ideas.

There is this post I found on Facebook that exemplifies our situation in the U.S. Unfortunately, it is not attributed to anyone. I would love to give credit where credit is due.

“WE ARE NOT IN THE SAME BOAT …

I heard that we are all in the same boat, but it’s not like that. We are in the same storm, but not in the same boat. Your ship could be shipwrecked and mine might not be. Or vice versa.

For some, quarantine is optimal. A moment of reflection, of re-connection, easy in flip flops, with a cocktail or coffee. For others, this is a desperate financial & family crisis.

For some that live alone they’re facing endless loneliness. While for others it is peace, rest & time with their mother, father, sons & daughters.

With the $600 weekly increase in unemployment some are bringing in more money to their households than they were working. Others are working more hours for less money due to pay cuts or loss in sales.

Some families of 4 just received $3400 from the stimulus while other families of 4 saw $0.

Some were concerned about getting a certain candy for Easter while others were concerned if there would be enough bread, milk and eggs for the weekend.

Some want to go back to work because they don’t qualify for unemployment and are running out of money. Others want to kill those who break the quarantine.

Some are home spending 2-3 hours/day helping their child with online schooling while others are spending 2-3 hours/day to educate their children on top of a 10-12 hour workday.

Some have experienced the near death of the virus, some have already lost someone from it and some are not sure if their loved ones are going to make it. Others don’t believe this is a big deal.

Some have faith in God and expect miracles during this 2020. Others say the worst is yet to come.

So, friends, we are not in the same boat. We are going through a time when our perceptions and needs are completely different.

Each of us will emerge, in our own way, from this storm. It is very important to see beyond what is seen at first glance. Not just looking, actually seeing.

We are all on different ships during this storm experiencing a very different journey.”

Let’s take a look at the Chronic Kidney Disease boat to see what I can find out for us. I immediately went to the National Kidney Foundation at https://www.kidney.org/coronavirus/kidney-disease-covid-19. If you’ve read last week’s blog, then you already know we are more vulnerable to Covid-19 and why.

Are there special precautions that someone with kidney disease should take?

Older adults and people with kidney disease or other severe chronic medical conditions seem to be at higher risk for more serious COVID-19 illness. If you are at higher risk of getting very sick from COVID-19, you should:

  • Stock up on supplies
  • Take everyday precautions to keep space between yourself and others
  • When you go out in public, keep away from others who are sick, limit close contact
  • Wash your hands often
  • Avoid crowds as much as possible
  • During an outbreak in your area, stay home as much as possible.

Please remember that if you are on dialysis, you should not miss your treatments. Contact your clinic if you feel sick or have any questions or concerns.

If you have a kidney transplant, it is important to remember to keep taking your anti-rejection medicines, maintain good hygiene and follow the recommendations from your healthcare team. Contact your healthcare team with any questions or concerns….

Should CKD patients wear masks in public?

It is best to stay home, unless you need to attend a dialysis treatment. If you must go out in public, ask your healthcare provider if it is necessary as a CKD patient to wear a face mask since each individual case is different.

The Centers for Disease Control and Prevention (CDC) recommends face masks for those who are infected with COVID-19, have symptoms of COVID-19, or taking care of someone with COVID-19.

The CDC also recommends wearing cloth face coverings to slow the spread of COVID-19 in areas where community-based transmission is significant. These homemade cloth face coverings are not masks and do not replace the President’s Coronavirus Guidelines. (Gail here: As you can see, Trump doesn’t have much more to offer than what we already know. To be fair, this site hasn’t been updated since March 16th, over a month ago. Wait a minute! Why isn’t this site updated daily?)

Tips for using a mask include a snug but comfortable fit covering the bridge of the nose and the entire mouth. Also, be sure to be laundered [sic] the cloth mask after use each outdoor use, ideally without damage to the shape or structure of the mask. … The CDC also recommends coffee filters as an alternative. Use of any mask is in addition to practicing social distancing or at least 6 feet from others to limit coronavirus spread. All patients at high risk, such as immunosuppressed transplant recipients or people receiving dialysis should follow the directions of their clinicians regarding the type of face covering that should be used outside of a clinic setting.

When in public it is important to practice social distancing by staying 6 feet away from other people and to also avoid touching your face. Wash your hands immediately after you have been in public.”

This is still paltry information at best. Emedicine at https://www.emedicinehealth.com/script/main/art.asp?articlekey=228849 gives us just a bit more insight about patients on dialysis according to the CDC:

“The CDC (Centers for Disease Control and Prevention) guidance recommends that for medically stable patients facilities give the option of waiting in a personal vehicle or outside the facility and to be contacted by mobile phone when they are ready to be seen.

  • Dialysis facilities should have space allocated to allow patients who are ill to sit separately from other patients by at least 6 feet.
  • Patients experiencing respiratory symptoms should promptly be taken to appropriate treatment areas to reduce time in waiting areas.
  • For those with symptoms, ideally, dialysis treatment should be provided in a separate room from other patients, with the door closed.
  • If a separate room is not available, the masked patient should be treated at a corner or end-of-row station not near the main traffic flow. A separation of at least 6 feet should be maintained between masked, symptomatic patients and other patients during treatment.
  • Use of hepatitis B isolation rooms should only be considered for patients with respiratory symptoms if the patient has hepatitis B or if no patients treated at the facility have hepatitis B.

Healthcare personnel caring for patients with undiagnosed respiratory infections should further observe standard contact and droplet precautions with eye protection unless a suspected diagnosis such as tuberculosis requires airborne precautions, according to the guidance.

Precautions should include using gloves, facemasks, eye protection, and isolation gowns.”

And transplantees? I am so frustrated by the lack of more concrete information that might be more helpful than that given to non-kidney patients. UNOS (United Network for Organ Sharing) at https://optn.transplant.hrsa.gov/governance/policy-notices/ offers the following information:

COVID-19 Policy Actions Implemented

The table below contains information for actions taken to address OPTN operational issues in the COVID-19 crisis.

Policy Summary Documents & supporting resources Effective date
Policy 1.4.F: Updates to Candidate Data during 2020 COVID-19 Emergency This emergency policy will allow transplant programs to refresh candidate clinical data with data obtained through previous testing in order to maintain current waitlist priority.

This policy prevents candidates who cannot undergo routine testing due to the COVID-19 crisis from being adversely affected on the waitlist.

OPTN Policy Notice March 17, 2020
Policy 3.7.D: Applications for Modifications of Kidney Waiting Time during 2020 COVID-19 Emergency This emergency policy allows transplant programs to submit a waiting time modification application to retroactively initiate waiting time for affected candidates.

This policy prevents potential non-dialysis candidates who meet creatinine clearance or glomerular filtration rate (GFR) criteria from being disadvantaged because they cannot obtain other testing required.

OPTN Policy Notice April 3, 2020
Policy 18.1: Data Submission Requirements
Policy 18.2: Timely Collection of Data
Policy 18.5.A: Reporting Requirements after Living Kidney Donation
Policy 18.5.B: Reporting Requirements after Living Liver Donation
This emergency policy change relaxes requirements for follow-up form submission.

The intent of the policy is to prevent unnecessary exposure risk to transplant recipients and living donors, and also to alleviate data burden for centers in the midst of COVID-19 crisis.

 

Longer blog or not today – and it is much longer – I wish you all would adhere to these conditions. Are they restricting? Possibly. Are they uncomfortable? Could be. Are they lifesaving? It seems they are. Be safe.

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!

James’s Kidney Transplant Wasn’t Preemptive

Last week, the third week of National Kidney Month, Kevin Fowler told us his story of the journey to his preemptive kidney transplant. This week, the fourth of National Kidney Month, James will tell us of his journey to a non preemptive kidney transplant. In case you were wondering, James and I met at an AAKP meeting in Tampa several years ago and just never lost contact. But let’s allow Uncle Jim (as he prefers to be called) tell his story.

My name is James Myers. I live in Hammond, IN. I am an ESRD & PKD patient. I was lucky enough to have a transplant on April 27th, 2016. I write to you today to tell you my story, as well as my experiences with polycystic kidney disease. At the age of 25, I went into the hospital with chest pain. From a simple x-ray, I was diagnosed with PKD.

I have lost five members of my family to PKD, including my dad. Because of my family’s history, I was immediately referred to Dr. Hellman, a nephrologist at Indiana University Health. He promptly put me on high blood pressure medication and a renal diet. I faithfully followed up at the kidney clinic every six months and took my medicine. I did the best I could do to stay on the kidney diet. There is no cure for PKD, and at that time, there was very little they could do for me.

I tried to ignore my condition and carry on with my life, but in reality, the fact is that after I was diagnosed with kidney failure, all of my decisions were colored by my impending death, or so I thought. It was a factor in a failed marriage, a legal career being cut short, and two professorships at two different colleges lost. I loved being with the kids.

Every step that I took from the date of my diagnosis was for one reason and one reason only; to avoid dialysis. I was able to do that for over 30 years, but in 2012. I could not delay it any longer. I began passing out, at home, in my classroom, everywhere. Many times after passing out, I was fearful I would be unable to reach the phone and call for help. I lived alone, and this caused a great deal of anxiety. At the age of 58, on July 28th, I started what would be a four year stretch on dialysis. My schedule was three days a week, four hours per session.

I was very, very angry when I first went on dialysis. After watching my dad die, I felt this was the beginning of the end. I had dreaded this for a long time. My dad passed after a short five years on dialysis, and I felt I was on the same life path as he. My days were numbered. I observed that many of my clinic mates came to the center by ambulance, were brought in on a gurney, walker, or wheelchair. Many used a cane. Many were diabetic on top of ESRD, and had suffered amputations. Five people were 90 years old or more. One woman was autistic and had the mentality of a 10 year old.

One of my dearest friends, Maureen O’Brien, looked after me. She forced me to open my eyes. I was able to drive and walk around on my own power. I had a fairly clear mind. I was taking classes toward two MBAs and was teaching other MBA candidates at the same time. Maureen had been dealing with kidney disease since the age of six. Every step along the way she had to argue and fight with healthcare officials. She had three transplants. Maureen provided encouragement and a bright, vivid smile. She provided a light on my path.

I began to understand my role. I made a conscious choice. I wanted to help my fellow Kidney Patients. I wanted to use my loud voice to help others. I wanted to advocate for my clinic mates who could not advocate for themselves. I did not like the way the dialysis clinics, the government, and the care staff pushed around or neglected my fellow Kidney Patients. The last straw for me was when they began to push for the cutting of funds to dialysis patients and clinics. I looked around the room and I realized with my health and skill set, I was the only one who could help. It occurred to me that if i did not accept this responsibility, maybe no one else would.

I joined as many kidney organizations as I could, I applied to be an advocate for as many groups as I could. I became very, very active on social media. I wrote petitions, I blogged, I contacted newspapers, I spoke and visited with my Congressman and Senators. I spoke frequently. To this day, I do whatever I have to do to bring about change for my fellow Kidney Patients. My life has purpose now. I like to think that my dad & Maureen would be proud of me.

I know that many of you are not used to me writing this way. I feel it is my responsibility to lift spirits, so I rarely talk about personal issues anymore. It is my hope to inspire others to likewise advocate for our fellow Kidney Patients. My friend Gail asked me to write my story out. Gail has been very candid with me, so I felt as she advocates for us, I should be just as candid with her & all of you. The point of this Kidney Story is to raise hope and to thank Gail and all of you that advocate for Kidney Patients.

PKD affects approximately 600, 000 Americans and 12.5 million people worldwide. It is one of the most inherited diseases on the planet. Polycystic Kidney Disease is more common than Cystic Fibrosis, Sickle Cell Anemia, Muscular Dystrophy, Hemophilia, Downs Syndrome, and Hodgkins Disease combined. PKD is one of the four leading causes of Kidney Failure. It costs the federal government in excess of $2 Billion annually in Medicare and Medicaid costs for dialysis, transportation and related treatment. There is no cure.

Sincerely,

James Myers
2019 Advocate of the Year for the NKF
BOD and Ambassador for the AAKP
Ambassador for the Chronic Disease Coalition
Ambassador for the NKF of Indiana
Ambassador for the American Kidney Fund
Ambassador for the PKD Foundation
Ambassador for the DPC

Thank you, Uncle Jim, for your generous sharing and even more generous advocacy.

Until next week,
Keep living your life!

Kevin Got His Preemptive Kidney Transplant

Several years ago,  I was invited to a kidney disease meeting. That’s where I first met Kevin Fowler, Principal of The Voice of the Patient, Inc. I liked listening to his ideas. Later, we walked into each other at an AAKP conference. This time I thoroughly enjoyed his company, but had quite a few questions about pre-emptive transplants. Kevin was good enough to explain his story, which answers my questions, in this guest blog during National Kidney Month. Take it away, Kevin! 

Kidney disease has always been a part of my life.  When I was growing up, my mom told me stories about her father who had suffered from Autosomal Polycystic Kidney Disease ( ADPKD), a disease which prompts the growth of cysts on the kidneys. My mom was the oldest of three sisters, and had great love and affection for my grandfather, Hubert Duvall.  I never had a chance to meet him because he died before I was born. It was the late 1950s when he was admitted to the hospital because he was not feeling well. Unknown to him, he was experiencing uremia, the inability of the kidneys to rid themselves of waste products such as urea, as he went into kidney failure. Shortly after his hospital admission he died.  As he neared death, he learned that ADPKD was the cause of his kidney failure. 

My grandfather’s patient journey had a profound impact upon his three daughters: Mary Ann, Ruth, and Laverne in that his genetic disease was passed on to each of them.  My mom, Mary Ann, was diagnosed after the birth of her third child. Imagine the joy of giving birth to a child while being diagnosed with a disease with limited scientific knowledge and a very uncertain future.  My mom and dad faced the unknown with a positive attitude, but with very little professional guidance.

As a young boy, I was very close to my mom.  I felt her unconditional love for me, and her whole life was dedicated to her three children.  As her ADPKD advanced, I saw her suffer with the disease. I saw her experience constant back pain, routine exhaustion and nausea.  All of this physical suffering was difficult to understand as a young child. Moreover, what was really difficult was the look on her face as she faced a nebulous future.

Eventually, my mom’s kidneys failed.  Unlike my grandfather, hemodialysis was available as a treatment option to sustain her life.  She started hemodialysis at the age of 48. While she approached dialysis with optimism, her future was never clear to her or our family.  I saw my mom struggle to survive on dialysis. I saw her return home from dialysis feeling exhausted and tired. I saw that when she had a rough hemodialysis session, it would take her longer to recover from the treatment.  She never bemoaned her fate, and provided us the legacy of her example.

After four and a half years on hemodialysis, my mom died at the age of 52.  Her dialysis experience left an indelible impression upon me. From that point on, I lived in fear that I would face the same fate.  I choose to never determine if I had the same disease. In many ways, it was a rational decision. Interventions were not able to slow down the progression of ADPKD.  If I were diagnosed with ADPKD, I would be penalized. I would face difficulty obtaining health and life insurance. The fear of facing the same patient journey as my mom was always hanging over my head, and I didn’t have the courage to determine if I too had ADPKD.  

I was married to my wife, Kathy, in 1995, and in less than five years we had two children.  During this time, I was being seen by a primary care physician who was aware of my ADPKD family history.  My kidney function was tested on my annual appointments, and he told me that my kidney function was fine. He stated that if I had ADPKD, there was not much that could be done to slow down the progression.  Later that same year near the Christmas season, I experienced deep flank (the side of your body between the bottom rib and the hip) pain. Initially, I attributed it to moving some furniture. The pain persisted, and because of my additional responsibilities as a husband and father, I called my primary care physician requesting an ultrasound test.  The ultrasound test would determine once and for all whether I too had ADPKD.

On a cold and sunny day in January 2001, my physician administered the ultrasound test. Watching his reaction told me all I needed to know.  At the age of 39, I was informed that I would be in kidney failure within the next three to five years. He offered to make a nephrology referral, but I declined.  Since he had not demonstrated competence managing my condition, I intuitively sensed that I could not trust his referral would serve my best interests. 

At that time, I was working in the pharmaceutical industry, so I called a physician friend at Barnes Hospital in St. Louis seeking a nephrology recommendation.  On my mother’s birthday, I met with my nephrologist – who had a profound impact on my life. He informed me that it was not necessary to be on dialysis, and that I could have a preemptive kidney transplant.  Because of my fear, I had never taken the time to learn about the different End Stage Kidney Disease treatment options. I was incredibly fortunate to receive the best treatment option.

On this recently past World Kidney Day, the theme was prevention due to detection.  In the United States approximately 90% of those with Stage 3 Chronic Kidney Disease are unaware of their condition.  This is no longer acceptable. The American Kidney Health Executive Order has initiated a public campaign to detect kidney disease earlier.  In fact, the National Kidney Foundation and CVS Kidney Care launched their public awareness campaign this month, National Kidney Month.  Unlike when I was diagnosed, there are now approved treatments to slow down the progression of kidney diseases.  There are potentially additional treatments in the pipeline for ADPKD, Diabetic Kidney Disease, FSGS, IGAN, etc. For many people there is no longer a need to live in fear.  There is a very real possibility that their patient journey may change for the better.

Thank you, Kevin, for sharing your personal kidney journey with us. Kevin may be reached via email at kevinjohnfowler@gmail.com or on Twitter as @gratefull080504.

 

Until next week,

Keep living your life!

Dax’s Journey to Dialysis Friendly Clothing

I met Dax Francis a few years ago in a Facebook CKD & Dialysis Support page. Slowly, I became aware that he produces dialysis clothing… and that fascinated me. Then it dawned on me that you should know such clothing exists, although Dax is not the only one who produces them. I asked him if he would write a guest blog explaining how this all started and where he got the idea. He promptly agreed and that will be today’s blog, the first blog in March, National Kidney Month.

Before we read Dx’s blog, some of us may need a reminder of what FSGS is. According to The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/fsgs/symptoms-causes/syc-20354693:

“Focal segmental glomerulosclerosis (FSGS) is a disease in which scar tissue develops on the parts of the kidneys that filter waste from the blood (glomeruli). FSGS can be caused by a variety of conditions.

FSGS is a serious condition that can lead to kidney failure, for which the only treatment options are dialysis or kidney transplant. Treatment options for FSGS depend on the type you have.”

I think we’re ready for Dax’s guest blog now.

My name is Dax Francis. I was diagnosed with FSGS as a young man, age twelve, and it was as if overnight school, sports, and friends were replaced with doctors, hospitals, and treatments. I struggled to find my place in this new body that could no longer do the things that had defined my life. Shortly after I graduated from high school, I had to begin dialysis which set me down a dark path of loneliness, depression, and sadness.

When I began dialysis I wanted everything to end. This was not the life I had ever wanted, and I believed that all my abilities, my skills, and talents were hidden behind a treatment filled with pain. The strength it took to live in that struggle was too much, and I put myself in situations where everything could have and should have ended. I was lost, and then I got that call saying it was my turn for a kidney transplant.

This was it! This is my moment to start my life! And then FSGS recurred shortly after surgery, and I was never able to leave treatment.

Devastation, utter devastation. I could not let my donor down though and felt a need to try to pursue my life once more despite the struggle. I enrolled in school for Social Work. I wanted to use my experiences to help those who may be in similar situations as myself, and I found my calling. Being able to help others and learn from those with wholly different lives and experiences than mine was the greatest gift I could have ever been given.

As I had all but finished the Social Work program, I realized that I could not be the social worker that people deserved due to my health. Being on treatment three times a week made it difficult to find work, and I rarely felt well enough to continually work. I struggled with this, feeling like I was never going to have a way to be a part of the world and the community nor was a place for me or anyone like me. This fact made me feel worthless and I dropped out of college 6 credits shy of my degree, because I thought it was pointless.

I wandered, confused, and didn’t know how to be someone who could make a difference. The wisdom I had gained from fighting every day to survive, I felt, was something special and I just wanted someone to ask me what I had learned while living in the struggle that is chronic illness. I just wanted someone to take notice of my fight and my struggle and see the person who can make a difference because of it all.

After the passing of a close friend I needed to live for both of us and put myself out there where I met someone who changed my life. I met someone who saw my fight and helped me realize that all I had been through made me capable of so much. She believed in me when I couldn’t believe in myself, this enabled me to live a life that I had always dreamed of, and I was doing it all despite being on dialysis. I was able to meet the love of my life despite the struggle. It all started with putting my true self out there and not being afraid of being that true person sharing with light and love.

I enrolled back in school and finished my 6 credits finally achieving my degree. During this time the world began to change. More and more negativity seemed to be seeping into my life and I found myself in a negative space despite having everything I wanted. I needed to make a change. At the end of 2017 I committed to being positive, uplifting and to helping others the way I can. I started making videos while I was actually on dialysis just to let others know that they were not alone and that they needed to continue their fight.

The support I received from those first videos inspired me to do more with my talents and abilities and Ivye Wear was born on the morning of January 13, 2018. I wanted to provide comfort, warmth, and hope to the warriors fighting every day to survive, often with little recognition of the strength it takes to survive and live in that struggle. I wanted to provide a suit of armor for the warrior when they go into battle; whether it’s dialysis, chemotherapy, infusions, or something else entirely, and I designed comfortable, accessible clothing designed for a range of medical treatments, procedures, and devices. Sweats, Hoodies, and T-Shirts designed for warriors, by warriors. All of our clothes provide zipper access to the vital areas your caregivers need to perform treatment while you can stay warm and dignified.

I never want anyone to feel as if they don’t have a place in this world due to their illness or struggle, Ivye Wear was born to be a beacon of hope for all chronic illness patients. I believe that it is our experiences that give us the strength, wisdom, and patience to change the world.

Thank you, Dax, for your honesty and especially for the dialysis clothing.

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!

Why Wait?

A few weeks ago, I received an email from Joe Russell. He works on health care policy issues for my Arizona Senator Sinema in Washington D.C., along with his colleague Sylvia Lee, policy advisor. He was letting me know both Sylvia and he would be in Arizona the following week, and holding a roundtable discussion with patients suffering from kidney disease, along with their providers, caregivers, and family members. They wanted to discuss a series of legislative proposals their office would be working on in the coming months, as well as gain a better understanding of the unique challenges patients with kidney disease face in Arizona. The National Kidney Foundation of Arizona recommended they reach out to me, given my work and experience on this topic.

Are you kidding, I thought. I’ve been trying to get someone in Arizona interested in the growth of CKD locally… and, of course, everywhere else, for over 12 years. Now, mind you, by 3:30 I’m exhausted (Damn chemo!), but I vowed to go even though it was later in the day (3 p.m.). And I did.

When I arrived, who did I see sitting at Senator Sinema’s table, but Raymond and Analyn Scott. They are the compilers of The 1 in 9 Tribe to which I had contributed a chapter. There were people from the National Kidney Foundation of Arizona, a transplant patient, my very own nephrologist (who is also Raymond’s) and Senator Sinema’s delegation.

Oh boy, I remember thinking, this is going to be good. And it was. Each person spoke to their own stage of CKD with Dr. DeSai (Raymond’s and my nephrologist) and the National Kidney Foundation of Arizona people speaking about all stages of CKD. I kept steering the discussion back to early stage treatment and awareness for all. It seemed all were in agreement with my ideas or, at least, they were interested.

But I want to let you know why I feel early intervention and general awareness are so important. This is a note I received from a reader.

”Please help. I just got blood results back from my yearly physical and saw that my eGFR was 55 and my creatinine was 1.09. After speaking to my GP she told me my results were nothing to ‘be concerned about’. Since the 2 above mentioned results were highlighted in red I figured perhaps I should ‘concern’ myself about it and research what it could possibly mean. I was shocked to read that it indicated kidney disease. When I told my doctor of my findings, she again pushed it off as nothing to worry about. Am I over reacting? Thanks for any help you can give me.”

Now we don’t know this reader’s age. That’s important because you lose one point off your Glomerular Filtration Rate every year once you hit the age of 40. For example, I turned 73 yesterday (Yes, it was a fun birthday with my family and friends despite the effects of chemo.). Subtract 40 from that and I have lost 33 points off my GFR simply by being alive and growing older. Considering the highest GFR is 120, although we usually use 100 for ease of figuring, my perfect GFR would be 87. But it’s not. It’s 55, so we know I have CKD, stage 3A just like this reader.

Nuts! I’m going on and on as if everyone reading this knew both what GFR is and the stages of CKD. Well, we’ll just correct that right now. According to MedlinePlus, part of the U.S. National Library of Medicine which, in turn, is part of the National Institutes of Health, at https://medlineplus.gov/ency/article/007305.htm.

Glomerular filtration rate

Glomerular filtration rate (GFR) is a test used to check how well the kidneys are working. Specifically, it estimates how much blood passes through the glomeruli each minute. Glomeruli are the tiny filters in the kidneys that filter waste from the blood.

How the Test is Performed

blood sample is needed.

The blood sample is sent to a lab. There, the creatinine level in the blood sample is tested. Creatinine is a chemical waste product of creatine. Creatine is a chemical the body makes to supply energy, mainly to muscles.

The lab specialist combines your creatinine level with several other factors to estimate your GFR. Different formulas are used for adults and children. The formula includes some or all of the following:

  • Age
  • Blood creatinine measurement
  • Ethnicity
  • Gender
  • Height
  • Weight”

Nor do we know the reader’s ethnicity. The National Kidney Foundation at https://www.kidney.org/sites/default/files/docs/12-10-4004_abe_faqs_aboutgfrrev1b_singleb.pdf explains why this is important:

“This is due to higher average muscle mass and creatinine generation rate in African Americans.”

So, why then, is it important to know if you’re only in stage 2 of CKD? Let me put it this way:

When I was first diagnosed with CKD, I was at a GFR of 39. That’s pretty low. Had I been tested earlier, I would have had more time to preserve more of my kidney function. While I’m now at about 55 GFR (just like my reader), it took years and years of hard work as far as diet, exercise, rest, sleep, avoiding anxiety, not drinking or smoking and making sure I paid special attention to my labs.

Imagine if I had known earlier that I had CKD. I could have started protecting my kidneys earlier, which may have meant I could avoid dialysis for longer… or maybe at all. It may have meant I wouldn’t reach the place where I needed a transplant, if I ever needed one.

If you are routinely checked via a blood test and urine test each time you see your family doctor – just like your heart and lungs are checked – you may be able to avoid being told you were in need of dialysis seemingly out of the blue. But you wouldn’t know to ask for these tests unless everyone is made aware of CKD and just how prevalent it is. Think about it.

Until next week,

Keep living your life!

Nephritis without the Lupus


Recently, I wrote about Lupus Nephritis. As one reader pointed out, it is possible to have Nephritis without Lupus. Let’s take a look at how that works.

According to MedicalNewsToday at https://www.medicalnewstoday.com/articles/312579.php,

“Nephritis is a condition in which the nephrons, the functional units of the kidneys, become inflamed. This inflammation, which is also known as glomerulonephritis, can adversely affect kidney function.

The kidneys are bean-shaped organs that filter the blood circulating the body to remove excess water and waste products from it.

There are many types of nephritis with a range of causes. While some types occur suddenly, others develop as part of a chronic condition and require ongoing management.”

Of course! ‘Itis’ means inflammation, while ‘neph’ means kidney. It’s amazing what you can remember learning in college over 50 years ago when you’re 72.

Hmmm, what do they mean by “many types of nephritis”? DoctorsHealthPress at doctorshealthpress.com/vital-organs/kidneys/types-nephritis-causes-symptoms-prevention/lists them for us:

1. Interstitial Nephritis                    

Interstitial nephritis is characterized by swelling between the tubules and kidneys. The kidney tubules reabsorb water and important substances from kidney filtration, and substances are secreted through urination.

Interstitial nephritis can be acute or chronic in nature. Acute interstitial nephritis is typically the result of an allergic reaction. Over 100 different medications cause interstitial nephritis, such as antibiotics, non-steroidal anti-inflammatory drugs (NSAIDs), and proton pump inhibitors.

Non-allergic interstitial nephritis causes include high calcium levels, low potassium levels, and autoimmune disorders.

  1. Pyelonephritis

Acute pyelonephritis is a severe and sudden kidney infection. Consequently, the kidneys will swell, which may lead to permanent damage. Frequent occurrences are known as chronic pyelonephritis.

The infection will begin in the lower urinary tract in the form of a urinary tract infection (UTI). Bacteria enter the body through the urethra and spread to the bladder. At that point, bacteria will travel from the ureters to the kidneys.

  1. Glomerulonephritis

Glomerulonephritis refers to a range of kidney conditions that cause inflammation in the very small blood vessels in the kidneys, which are called glomeruli.

It is also called glomerular disease or glomerular nephritis. When the glomeruli become damaged, the kidney can no longer efficiently remove excess fluids and waste.

  1. Lupus Nephritis [Gail here: This is they type I recently wrote about.]

Lupus nephritis is inflammation of kidneys caused by the autoimmune disease known as systemic lupus erythematous (SLE)—also called lupus. This is where the body’s immune system targets its own tissues.

As many as 60% of lupus patients will later get lupus nephritis. The most common symptoms include dark urine, weight gain, high blood pressurefoamy urine, and the need for nighttime urination.

  1. IgA Nephropathy (Berger’s Disease)

IgA (immunoglobulin A) nephropathy is also called Berger’s disease. The kidney disease occurs when the antibody IgA lodges within the kidneys.

Over time, this leads to local inflammation, which interferes in the kidneys’ ability to filter waste from the blood. It is a progressive disease that may lead to end-stage kidney failure.

  1. Alport Syndrome

Alport syndrome is an inherited disease caused by genetic mutations to the protein collagen. It can lead to kidney failure, hearing problems, and vision issues.

It will often run in families, and the severity is greater in men. Common symptoms include high blood pressure, protein in the urineblood in the urine, and swelling in the ankle, legs, feet, and around the eyes.

The genetic types of Alport syndrome include X-linked Alport syndrome (XLAS), autosomal recessive Alport syndrome (ARAS), and autosomal dominant Alport syndrome (ADAS).”

I usually move on to symptoms next but – as you can see – DoctorsHealthPress already took care of that for us. Thank you to DoctorsHealthPress.

Healthline (Yep, that’s the same Healthline that awarded SlowItDownCKD a place among the top six kidney disease blogs in both 2016 & 2017.) at https://www.healthline.com/health/acute-nephritic-syndrome#types offered more detail about the cause of several acute nephritis diseases:

Interstitial nephritis

In interstitial nephritis, the spaces between the kidney tubules become inflamed. This inflammation causes the kidneys to swell.

Pyelonephritis

Pyelonephritis is an inflammation of the kidney, usually due to a bacterial infection. In the majority of cases, the infection starts within the bladder and then migrates up the ureters and into the kidneys. Ureters are two tubes that transport urine from each kidney to the bladder.

Glomerulonephritis

This type of acute nephritis produces inflammation in the glomeruli. There are millions of capillaries within each kidney. Glomeruli are the tiny clusters of capillaries that transport blood and behave as filtering units. Damaged and inflamed glomeruli may not filter the blood properly. Learn more about glomerulonephritis.

What causes acute nephritis?

Each type of acute nephritis has its own causes.

Interstitial nephritis

This type often results from an allergic reaction to a medication or antibiotic. An allergic reaction is the body’s immediate response to a foreign substance. Your doctor may have prescribed the medicine to help you, but the body views it as a harmful substance. This makes the body attack itself, resulting in inflammation.

Low potassium in your blood is another cause of interstitial nephritis. Potassium helps regulate many functions in the body, including heartbeat and metabolism.

Taking medications for long periods of time may damage the tissues of the kidneys and lead to interstitial nephritis.

Pyelonephritis

The majority of pyelonephritis cases results fromE.coli bacterial infections. This type of bacterium is primarily found in the large intestine and is excreted in your stool. The bacteria can travel up from the urethra to the bladder and kidneys, resulting in pyelonephritis.

Although bacterial infection is the leading cause of pyelonephritis, other possible causes include:

  • urinary examinations that use a cystoscope, an instrument that looks inside the bladder
  • surgery of the bladder, kidneys, or ureters
  • the formation of kidney stones, rocklike formations consisting of minerals and other waste material

Glomerulonephritis

The main cause of this type of kidney infection is unknown. However, some conditions may encourage an infection, including:

  • problems in the immune system
  • a history of cancer
  • an abscess that breaks and travels to your kidneys through your blood

It certainly looks like there’s a lot more to nephritis than we’d thought.

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!

Sodium Bicarbonate, Anyone?

I belong to a number of social media Chronic Kidney Disease support groups. Time and time again, I’ve seen questions about sodium bicarbonate use. I never quite understood the answers to members’ questions about this. It’s been years, folks. It’s time for me to get us some answers.

My first question was, “What is it used for in conjunction with CKD?” Renal & Urology News at https://www.renalandurologynews.com/home/conference-highlights/era-edta-congress/sodium-bicarbonate-for-metabolic-acidosis-slows-ckd-progression/ had a current response to this. Actually, it’s from last June 19th.

“Sodium bicarbonate treatment of metabolic acidosis in patients with chronic kidney disease (CKD) improves renal outcomes and survival, researchers reported at the 56th European Renal Association-European Dialysis and Transplant Association Congress in Budapest, Hungary.

In a prospective open-label study, patients with CKD and metabolic acidosis who took sodium bicarbonate (SB) tablets were less likely to experience a doubling of serum creatinine (the study’s primary end point), initiate renal replacement therapy (RRT), and death than those who received standard care (SC).”

It may be current but what does it mean? Let’s start with metabolic acidosis. Medline Plus, part of the U.S. National Library of Medicine which, in turn, is part of the National Institutes of Health at https://medlineplus.gov/ency/article/000335.htm explains it this way:

“Metabolic acidosis is a condition in which there is too much acid in the body fluids.”

But why is there “too much acid in the body fluid?”

I like the simply stated reason I found at Healthline (https://www.healthline.com/health/acidosis), the same site that deemed SlowItDownCKD among the Best Six Kidney Disease Blogs for 2016 and 2017.

“When your body fluids contain too much acid, it’s known as acidosis. Acidosis occurs when your kidneys and lungs can’t keep your body’s pH in balance. Many of the body’s processes produce acid. Your lungs and kidneys can usually compensate for slight pH imbalances, but problems with these organs can lead to excess acid accumulating in your body.”

In case you’ve forgotten, pH is the measure of how acid or alkaline your body is. So, it seems that when the kidneys (for one organ) don’t function well, you may end up with acidosis. Did you know the kidneys played a part in preventing metabolic acidosis? I didn’t.

I went to MedicalNewsToday at https://www.medicalnewstoday.com/articles/263834.php in an attempt to find out if metabolic syndrome has any symptoms. By the way, AHA refers to the American Heart Association.

“According to the AHA, a doctor will often consider metabolic syndrome if a person has at least three of the following five symptoms:

  1. Central, visceral, abdominal obesity, specifically, a waist size of more than 40 inches in men and more than 35 inches in women
  2. Fasting blood glucose levels of 100 mg/dL or above
  3. Blood pressure of 130/85 mm/Hg or above
  4. Blood triglycerides levels of 150 mg/dL or higher
  5. High-density lipoprotein (HDL) cholesterol levels of 40 mg/dL or less for men and 50 mg/dL or less for women

Having three or more of these factors signifies a higher risk of cardiovascular diseases, such as heart attack or stroke, and type 2 diabetes.”

Well! Now we’re not just talking kidney (and lung) involvement, but possibly the heart and diabetes involvement. Who knew?

Of course, we want to prevent this, but how can we do that?

“You can’t always prevent metabolic acidosis, but there are things you can do to lessen the chance of it happening.

Drink plenty of water and non-alcoholic fluids. Your pee should be clear or pale yellow.

Limit alcohol. It can increase acid buildup. It can also dehydrate you.

Manage your diabetes, if you have it.

Follow directions when you take your medications.”

Thank you to WebMD at https://www.webmd.com/a-to-z-guides/what-is-metabolic-acidosis#2  for the above information.

Let’s say – hypothetically, of course – that you were one of the unlucky CKD patients to develop metabolic acidosis. How could you treat it?

I went directly to the National Kidney Foundation at https://www.kidney.org/atoz/content/metabolic-acidosis to find out. This is what they had to say:

“We all need bicarbonate (a form of carbon dioxide) in our blood. Low bicarbonate levels in the blood are a sign of metabolic acidosis.  It is a base, the opposite of acid, and can balance acid. It keeps our blood from becoming too acidic. Healthy kidneys help keep your bicarbonate levels in balance.  Low bicarbonate levels (less than 22 mmol/l) can also cause your kidney disease to get worse.   A small group of studies have shown that treatment with sodium bicarbonate or sodium citrate pills can help keep kidney disease from getting worse. However, you should not take sodium bicarbonate or sodium citrate pills unless your healthcare provider recommends it.”

I’m becoming a wee bit nervous now and I’d like to know when metabolic acidosis should start being treated if you, as a CKD (CKF) patient do develop it. Biomed at http://www.biomed.cas.cz/physiolres/pdf/prepress/1128.pdf reassured me a bit.

“Acid–base disorder is commonly observed in the course of CKF. Metabolic acidosis is noted in a majority of patients when GFR decreases to less than 20% to 25% of normal. The degree of acidosis approximately correlates with the severity of CKF and usually is more severe at a lower GFR…. Acidosis resulting from advanced renal insufficiency is called uremic acidosis. The level of GFR at which uremic acidosis develops varies depending on a multiplicity of factors. Endogenous acid production is an important factor, which in turn depends on the diet. Ingestion of vegetables and fruits results in net production of alkali, and therefore increased ingestion of these foods will tend to delay the appearance of metabolic acidosis in chronic renal failure. Diuretic therapy and hypokalemia, which tend to stimulate ammonia production, may delay the development of acidosis. The etiology of the renal disease also plays a role. In predominantly tubulointerstitial renal diseases, acidosis tends to develop earlier in the course of renal insufficiency than in predominantly glomerular diseases. In general, metabolic acidosis is rare when the GFR is greater than 25–20 ml/min (Oh et al. 2004).”

At least I understand why the sodium bicarbonate and I realize it’s not for me… yet.

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!

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!

 

Adult Toys

In keeping with my promise to myself that August would be answer-readers’-questions month, this week I’ll be writing about the occupational therapy toys a reader asked about. Did you think I meant the other kind of adult toys? Hmmm, maybe it would make sense to know why toys are used in dealing with neuropathy in the first place.

As my occupational therapist explained it, the therapy toys are used to stimulate the nerve endings to bud so that new pathways may be created. I don’t fully understand it, but this is what I wrote in my July 29th blog:

“I have a bag of toys. Each has a different sensory delivery on my hands and feet. For example, there’s a woven metal ring that I run up and down my fingers and toes, then up my arms and legs. I do the same with most of the other toys: a ball with netting over it, another with rubber strings hanging from it. I also have a box of uncooked rice to rub my feet and hands in… and lots of other toys. The idea is to desensitize my hands and feet.”

Ah, but now we know these therapy toys are used for more. Desensitization? Good. Building new pathways for sensations? Better. Yes, I want my hands and feet to stop feeling so tingly all the time, but I also want to be able to feel whatever it is I’m holding or touching. Remember, for me, this was an unexpected side effect of chemotherapy, although it could have just as easily been diabetic peripheral neuropathy. Aha! Now you see why I’ve included this in the blog posts in the first place: Diabetes is the number one cause of Chronic Kidney Disease.

Ready to explore some therapy toys? Well, all rightee. Let’s start with my favorite, the one I call the smoosh ball. Oh, since I bought a bag full of these different therapy toys on Amazon, none were labeled so I made up my own names for them. Hey, I’m a writer. I can get away with that.

This one is soft and rubbery. It’s the “another with rubber strings hanging from it,” mentioned above that I rub on my toes and up my legs, then my fingers and up my arms as I do with most of these therapy toys. It causes the loveliest goose bumps. I’m surprised that Shiloh, our 80 pound dog, doesn’t go after it just for the way it seems to shimmer. I also squeeze the smoosh ball with each hand.

The opposite of the smoosh ball is the steel ring. This one is almost painful if I’m not careful. In addition to using it on my hands, arms, fingers, and toes as I did the smoosh ball, I also use it as a ring on each toe and finger moving it up and down. Notice I’m not mentioning how many repetitions I do for each of the therapy toys. That’s because everyone is different. Your neuropathy may be worse than mine, or – hopefully – not as bad as mine.

The pea pod is the hardest therapy toy for me to use. The idea is to squeeze the pod to cause the peas to pop up one by one. Sounds easy, right? Nope. You need to isolate these fingers you can’t even feel until you get the right ones pressing on the right places to make that little fellow pop out.

The brush is a comforting therapy toy. I wonder if this is why horses like being curried (brushed). It’s a soft, rubber brush which feels almost luxuriant as I rub it up my fingers, arms, toes, and legs. It was also the first therapy toy I was introduced to since the occupational therapist used it during my first treatment.

Then there’s the ball with the netting around it. I do the usual rub the fingers, arms, toes, and legs with it. I also squeeze it like a stress ball. It feels completely different than the smoosh ball and even makes a sort of flatulence sound when I squeeze it. Well, that was unexpected.

I have a small ball that looks like a globe. Maybe that’s because children use these therapy toys, too? All I can figure out to do with this is to squeeze it like a stress ball. I’ll have to remember to ask the occupational therapist if that’s what it’s meant for.

The little beads can defeat me. The idea is to place them in a bowl and then pick them up using your thumb and the different fingers one at a time. At first, I was using my long nails to pick them up. Once I realized what I was doing, I cut my nails. It is surprising to me to realize how weak some of my fingers are as compared to how strong others are.

The mesh has a bead in it. You move it back and forth from one end of the mesh to the other, using each finger plus your thumb individually. Of course, this one feels really good on the toes, legs, fingers, and arms because it’s a soft mesh (but not as soft as the mesh on the net ball).

The snake is a long piece of soft rubber. Before I execute the usual rubbing on the toes, legs, fingers, and arms, I use it the way you use an elastic band for stretching across your chest. It is more flexible than you’d think.

Not part of my bag of tricks – I mean therapy toys – is the foot roller. This is another therapy toy I bought on Amazon after trying one out at an occupational therapy treatment.  Have you ever heard the expression ‘hurts so good?’ That’s what this feels like while you roll it back and forth under your feet. Lest you get me wrong, it does not hurt enough to make you want to stop, just enough to make those tingly feet tingle even more.

I also do stretching exercises for my hands, place my feet in rice, and try to pick up a wash cloth with my toes. It takes a long time to exercise, but I think it’s worth it.

Until next week,

Keep living your life!

That Looks Swollen       

Remember I mentioned that several readers have asked questions that would become blogs? For example, one reader’s question became last week’s blog concerning creatinine and PTH. Another reader’s question became this week’s blog about lymphedema. She was diagnosed with it and wondered if it had anything to do with her protein buildup.

She’s a long time reader and online friend, so she already knows I remind those that ask questions that I am not a doctor and, no matter what I discover, she must speak with her nephrologist before taking any action based on what I wrote. That is always true. I’m a CKD patient just like you. The only difference is that I know how to research (Teaching college level Research Writing taught me a lot.) and happen to have been a writer for decades before I was diagnosed. Just take a look at my Amazon Author Page at amazon.com/author/gailraegarwood . But enough about me.

Anyone know what lymphedema is? I didn’t when I first heard the word, although my Hunter College of C.U.N.Y education as an English teacher gave me some clues. Edema had something to do with swelling under the skin. Actually, we can get more specific with The Free Medical Dictionary at https://medical-dictionary.thefreedictionary.com/-edema :

“suffix meaning swelling resulting from an excessive accumulation of serous fluid in the tissues of the body in (specified) locations”

I took a guess that lymph had to do with the lymph nodes. Using the same dictionary, but this time at https://medical-dictionary.thefreedictionary.com/lymph, I found this:

“The almost colourless fluid that bathes body tissues and is found in the lymphatic vessels that drain the tissues of the fluid that filters across the blood vessel walls from blood. Lymph carries antibodies and lymphocytes (white blood cells that help fight infection) that have entered the lymph nodes from the blood.”

Time to attach the suffix (group of letters added at the end of a word that changes its meaning) to the root (most basic meaning of the word) to come up with a definition of lymphedema. No, not my definition, the same dictionary’s.

“Swelling, especially in subcutaneous tissues, as a result of obstruction of lymphatic vessels or lymph nodes, with accumulation of lymph in the affected region.”

I found this definition at https://www.thefreedictionary.com/lymphedema, but if you switch the search options at the top of the page from dictionary to medical dictionary, you’ll find quite a bit of information about lymphedema.

Okay, we know what lymphedema is now but what – if anything – does that have to do with protein buildup? This is the closest I could come to an answer that

  1. Wasn’t too medical for me to understand and
  2. Had anything to do with the kidneys.

“A thorough medical history and physical examination are done to rule out other causes of limb swelling, such as edema due to congestive heart failure, kidney failure, blood clots, or other conditions.”

It’s from MedicineNet at https://www.medicinenet.com/lymphedema/article.htm#how_is_lymphedema_diagnosed

My friend, while a Chronic Kidney Disease patient, is not in renal failure. Was there something I missed?

Johns Hopkins Medicine at https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/treating-lymphedema gives us our first clue. It seems that lymphedema is a buildup of a specific fluid: protein-rich:

“Lymphedema is an abnormal buildup of protein-rich fluid in any part of the body as a result of malfunction in the lymphatic system.”

Malfunction in the lymphatic system? What could cause that? According to Lymphatic Education & Research at https://lymphaticnetwork.org/living-with-lymphedema/lymphatic-disease:

Secondary Lymphedema (acquired regional lymphatic insufficiency) is a disease that is common among adults and children in the United States. It can occur following any trauma, infection or surgery that disrupts the lymphatic channels or results in the loss of lymph nodes. Among the more than 3 million breast cancer survivors alone, acquired or secondary lymphedema is believed to be present in approximately 30% of these individuals, predisposing them to the same long-term problems as described above. Lymphedema also results from prostate, uterine, cervical, abdominal, orthopedic cosmetic (liposuction) and other surgeries, malignant melanoma, and treatments used for both Hodgkin’s and non-Hodgkin’s lymphoma. Radiation, sports injuries, tattooing, and any physical insult to the lymphatic pathways can also cause lymphedema. Even though lymphatic insufficiency may not immediately present at the time any of the events occur, these individuals are at life-long risk for the onset of lymphedema.”

I know the reader who has asked the question has a complex medical history that may include one or more of the conditions listed above. As for the protein buildup, we already know that kidneys which are

not working well don’t filter the protein from your blood as well as they could. So, is there a connection between this reader’s protein buildup and her lymphedema? Sure looks like it.

While the following is from BreastCancer.org at https://www.breastcancer.org/treatment/lymphedema/how/start, it is a simple explanation that may apply to other causes of lymphedema, too:

“… lymph nodes and vessels can’t keep up with the tissues’ need to get rid of extra fluid, proteins (Gail here: my bolding), and waste.… the proteins and wastes do not get filtered out of the lymph as efficiently as they once did. Very gradually, waste and fluid build up…. “

Ready for a topic change? The World Health Organization offers this pictograph for our information. Notice diabetes, one of the main causes of Chronic Kidney Disease.

Until next week,

Keep living your life!

Which Comes First?

Periodically, a blog will actually be the response to a reader’s question. I’ve received several questions lately. The first thing I do when I receive a question is to be sure the reader understands that I am not a doctor and that no matter what I research for them, they must clear the information with their nephrologist before taking any action. Today’s question was asked by a long time reader who already understands my terms for researching for her.

That’s a pretty big build up for a common sense question. But, at least now you understand how I handle reader questions and may want to ask one (or more) of your own.

Back to the question at hand: What is the connection between PTH and creatinine and which causes a problem with the other?

What’s PTH, you ask. Let’s find out. You and your Hormones: an educational source from the Society of Endocrinology at https://www.yourhormones.info/hormones/parathyroid-hormone/ was a great deal of help here:

“Alternative names for parathyroid hormone

PTH; parathormone; parathyrin

What is parathyroid hormone?

The parathyroid glands are located in the neck, just behind the butterfly-shaped thyroid gland.

Parathyroid hormone is secreted from four parathyroid glands, which are small glands in the neck, located behind the thyroid gland. Parathyroid hormone regulates calcium levels in the blood, largely by increasing the levels when they are too low. It does this through its actions on the kidneys, bones and intestine:

  1. Bones – parathyroid hormone stimulates the release of calcium from large calcium stores in the bones into the bloodstream. This increases bone destruction and decreases the formation of new bone.
  2. Kidneys – parathyroid hormone reduces loss of calcium in urine. Parathyroid hormone also stimulates the production of active vitamin D in the kidneys.
  3. Intestine – parathyroid hormone indirectly increases calcium absorption from food in the intestine, via its effects on vitamin D metabolism

Got it? Okay then let’s remind ourselves what creatinine is. I wrote the following in last December 24th’s blog:

“A good place to start is always at the beginning. By this, I wonder if I mean the beginning of my Chronic Kidney Disease awareness advocacy as the author of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease and the blog or if I mean the basics about creatinine. Let’s combine them all. The following definition is from the book which became the earliest blogs:

Creatinine clearance: Compares the creatinine level in your urine with that in your blood to provide information about your kidney function’

Hmmm, that didn’t exactly work. Let’s try again. Bingo! It was in SlowItDownCKD 2014,

Creatinine: chemical waste product that’s produced by our muscle metabolism and to a smaller extent by eating meat. {MayoClinic.org}”

That was nine years ago, but the information remains the same today.

So now, we know what both PTH and creatinine are, but what’s the connection? According to VIVO Pathophysiology, Colorado State University at http://www.vivo.colostate.edu/hbooks/pathphys/endocrine/thyroid/pth.html :

Suppression of calcium loss in urine: In addition to stimulating fluxes of calcium into blood from bone and intestine, parathyroid hormone puts a brake on excretion of calcium in urine, thus conserving calcium in blood. This effect is mediated by stimulating tubular reabsorption of calcium. Another effect of parathyroid hormone on the kidney is to stimulate loss of phosphate ions in urine.”

To recap so far, we know what both PTH and creatinine are and what the connection between the two is. Now we need to know if one causes the other and, if so, which.

Chronic kidney failure. Your kidneys convert vitamin D into a form that your body can use. If your kidneys function poorly, usable vitamin D may decline and calcium levels drop. Chronic kidney failure is the most common cause of secondary hyperparathyroidism.”

Thank you to the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/symptoms-causes/syc-20356194 for this information.

 

Whoops! You may need a few reminders to understand the Mayo Clinic’s information, so here they are. Vitamin D helps the body absorb calcium properly. Calcium is necessary for strong bones and teeth. Many people don’t know it’s also necessary for blood clotting, nerves and heart. “Hyper” means over or, in this case, high as in above the necessary. Remember that when calcium or vitamin D is low, PTH rises. In my mind’s eye, I see a scale balancing the two out.

I did not find any information about PTH causing high creatinine. That doesn’t mean there isn’t any. It just means there isn’t any I could access. I found a journal site that looked promising, but it turned out to be for endocrinologists only. Too bad for us.

I do hope I’ve answered my reader’s question to her satisfaction. I know I enjoyed learning all this new information. You’re right: that’s my signal for a topic change.

“The Kidney Project is a national research initiative with a goal to create a small, surgically implanted, and free-standing bioartificial kidney to treat renal failure. RSN Founder and President Lori Hartwell catches up with Dr. Shuvo Roy who is a bioengineer professor at the University of California San Francisco to learn what is next for the Kidney Project and when clinical trials might begin. Dr. Shuvo Roy is passionate about this device that will mimic the kidneys and take the place of dialysis. Listen in to this exciting and hopeful show.

Listen in to the first conversation about the Kidney Project with Dr. Shuvo Roy.

 Learn more about the Kidney Project and Dr. Shuvo Roy

It’s an exciting time in the world of Chronic Kidney Disease Awareness right now. Even the government has acknowledged it’s time to deal with CKD patients. Keep on the lookout for more and more updates.

Until next week,

Keep living your life!

Platelets Keep It Together

During my chemo journey, I’ve needed an infusion of platelets several times. Chronic Kidney Disease patients sometimes need them, too, but I’ll write about that later on in this blog. First question from the audience?

Oh, that’s a good one: What are platelets? This is from my very first CKD book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease and will help to explain.

“1. The white blood cells makeup your immune system. There are usually from 7,000 to 25,000 WBC in a drop of blood, but if you have an infection, that number rises since these are the infection fighting blood cells.

2. The red blood cells, also called erythrocytes, carry oxygen to the other cells in your body – so the higher the number here the better – and waste such as carbon dioxide from them. There are approximately five billion red blood cells – the midsized cells – in a single drop of your blood.

3. The platelets deal with the blood’s clotting ability by repairing leaks in your blood vessels. Normally, there are 150,000 to 350,000 platelets in one drop of blood.”

I’ve included all three types of blood cells as we just might need that information later on.

Okay, how about another question? What’s that? You want to know how you know if your platelets are decreased? When you have blood tests, one of them is usually the CBC or Complete Blood Count. Let’s see if we can find more information from The Mayo Clinic at https://www.mayoclinic.org/tests-procedures/complete-blood-count/about/pac-20384919.

“A complete blood count (CBC) is a blood test used to evaluate your overall health and detect a wide range of disorders, including anemia, infection and leukemia.

A complete blood count test measures several components and features of your blood, including:

Red blood cells, which carry oxygen

White blood cells, which fight infection

Hemoglobin, the oxygen-carrying protein in red blood cells

Hematocrit, the proportion of red blood cells to the fluid component, or plasma, in your blood

Platelets, which help with blood clotting”

If your doctors are anything like mine, I have one every three months for my primary care doctor, an annual CBC for my nephrologist, and weekly for my oncologist.

Now, remember the normal range of platelets is 150,000 to 350,000 platelets in one drop of blood. Mine were 16,000. Sure, it was the chemotherapy that was killing my platelets, but it was also the chemotherapy that was shrinking the tumor and lowering the tumor markers in my CA19-9 (blood test for tumor markers in pancreatic cancer). I couldn’t stop the chemotherapy, but my doctors could raise my platelets via infusion.

Young man in the back? Nice! He wants to know what the difference between infusion and transfusion is.  According to The Free Dictionary’s Medical Dictionary at https://medical-dictionary.thefreedictionary.com/infusion, infusion means

1. the steeping of a substance in water to obtain its soluble principles.

2. the product obtained by this process.

3. the slow therapeutic introduction of fluid other than blood into a vein.

That’s right. The third definition is the one we need.

Using the same source, this time at https://medical-dictionary.thefreedictionary.com/transfusion, we learn that transfusion means

“Transfusion is the process of transferring whole blood or blood components from one person (donor) to another (recipient).”

By the way, there’s quite a bit of other information about transfusions on this page.

Let’s talk about platelet infusions and CKD patients now. UpToDate at https://www.uptodate.com/contents/platelet-dysfunction-in-uremia  offers the following, but we may need a bit of hand holding to understand it:

“The association between renal dysfunction and bleeding was recognized more than 200 years ago…. However, there remains an incomplete understanding of the underlying pathophysiology. Impaired platelet function is one of the main determinants of uremic bleeding. This impairment is due largely to incompletely defined inhibitors of platelet function in the plasma of patients with markedly reduced kidney function. Abnormal platelet-endothelial interaction and anemia also play a role.”

Do you remember what uremic means? No problem … come along with me to visit my old buddy, the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/uremia

“1accumulation in the blood of constituents normally eliminated in the urine that produces a severe toxic condition and usually occurs in severe kidney disease

2: the toxic bodily condition associated with uremia”

Let’s use the same dictionary, this time at https://www.merriam-webster.com/dictionary/endothelial, for the definition of endothelial, which is the adjective or describing word for endothelium.

“1: an epithelium of mesodermal origin composed of a single layer of thin flattened cells that lines internal body cavities and the lumens of vessels

2: the inner layer of the seed coat of some plants”

You guessed it: the first definition is the one we need. I think all the pieces are in place for you to understand the need for the right number of platelets and that platelet infusions are sometimes necessary. Too bad I didn’t before my white blouses and nightgowns were stained by the blood leaking from my nose (and other places too delicate to mention). Oh well, I can always buy more clothes.

New topic. I’ve written about All of Us Research several times and received this email from them this week.

“In case you missed it, we introduced our new Data Browser at the All of Us Research Program symposium on May 6th. The Data Browser is an interactive tool that lets you learn more about the health data that you and all the other participants have contributed so far. Currently in beta testing, it lets you search by topics like health conditions, survey questions, and physical measurements, and will include more data over time.

 We invite you to take a look at the Data Browser and let us know what you think. If you have feedback, you can email support@ResearchAllofUs.org.”

The URL for the Data Browser is https://databrowser.researchallofus.org.

Until next week,

Keep living your life!

More Time to Learn

I don’t think I’ve ever felt this tired in my life. Cancer does that… and it leaves me a lot of time in bed to explore whatever I’d like to on the internet. So now I’m discovering all these – what’s the word? – possibly peripheral? diseases that affect the kidneys. For example, while I don’t have the energy to post a new Chronic Kidney Disease picture on Instagram every day, I do check the site daily and like what appeals to me and learn from what’s new to me.

That’s where I noticed posts about Bartter syndrome. If you’re like me, you want to know about something you’ve never heard of before. Let’s explore this together.

I went directly to my old friend, MedlinePlus, which is part of the U.S. National Library of Medicine at https://medlineplus.gov/ency/article/000308.htm for a definition and the causes:

“Bartter syndrome is a group of rare conditions that affect the kidneys.

Causes

There are five gene defects known to be associated with Bartter syndrome. The condition is present at birth (congenital). The condition is caused by a defect in the kidneys’ ability to reabsorb sodium. People affected by Bartter syndrome lose too much sodium through the urine. This causes a rise in the level of the hormone aldosterone, and makes the kidneys remove too much potassium from the body. This is known as potassium wasting. The condition also results in an abnormal acid balance in the blood called hypokalemic alkalosis, which causes too much calcium in the urine.”

It looks like there are a few terms here we may now be familiar with. Let’s take a look at aldosterone. The Hormone Health Network from the Endocrine Society at https://www.hormone.org/hormones-and-health/hormones/aldosterone tells us:

“Aldosterone is produced in the cortex of the adrenal glands, which are located above the kidneys…. Aldosterone affects the body’s ability to regulate blood pressure. It sends the signal to organs, like the kidney and colon, that can increase the amount of sodium the body sends into the bloodstream or the amount of potassium released in the urine. The hormone also causes the bloodstream to re-absorb water with the sodium to increase blood volume. All of these actions are integral to increasing and lowering blood vessels. Indirectly, the hormone also helps maintain the blood’s pH and electrolyte levels.”

And hypokalemic alkalosis? What is that? Healthline at https://www.healthline.com/health/alkalosis#types  gave me the answer: “Hypokalemic alkalosis Hypokalemic alkalosis occurs when your body lacks the normal amount of the mineral potassium. You normally get potassium from your food, but not eating enough of it is rarely the cause of a potassium deficiency. Kidney disease, excessive sweating, and diarrhea are just a few ways you can lose too much potassium. Potassium is essential to the proper functioning of the:

  • heart
  • kidneys
  • muscles
  • nervous system
  • digestive system”

Hmmm, so kidney disease can cause you to lose too much potassium, which can then interfere with the proper functioning of your kidneys. Doesn’t sound good to me. But, remember that the condition is congenital and will show up at birth.

Let’s say it does. Then what? According to Verywellhealth at https://www.verywellhealth.com/bartter-syndrome-2860757:

“Treatment of Bartter syndrome focuses on keeping the blood potassium at a normal level. This is done by having a diet rich in potassium and taking potassium supplements if needed. There are also drugs that reduce the loss of potassium in the urine, such as spironolactone, triamterene, or amiloride. Other medications used to treat Bartter syndrome may include indomethacin, captopril, and in children, growth hormone.”

Food rich in potassium? I’m sure bananas came directly into your mind but there are others. I chose to use the National Kidney Foundation’s list of high potassium foods at https://www.kidney.org/atoz/content/potassium since this is a blog about CKD.What foods are high in potassium (greater than 200 milligrams per portion)? The following table lists foods that are high in potassium. The portion size is ½ cup unless otherwise stated. Please be sure to check portion sizes. While all the foods on this list are high in potassium, some are higher than others.

High-Potassium Foods
Fruits Vegetables Other Foods
Apricot, raw (2 medium) dried (5 halves) Acorn Squash Bran/Bran products
Avocado (¼ whole) Artichoke Chocolate (1.5-2 ounces)
Banana (½ whole) Bamboo Shoots Granola
Cantaloupe Baked Beans Milk, all types (1 cup)
Dates (5 whole) Butternut Squash Molasses (1 Tablespoon)
Dried fruits Refried Beans Nutritional Supplements: Use only under the direction of your doctor or dietitian.
Figs, dried Beets, fresh then boiled
Grapefruit Juice Black Beans
Honeydew Broccoli, cooked Nuts and Seeds (1 ounce)
Kiwi (1 medium) Brussels Sprouts Peanut Butter (2 tbs.)
Mango(1 medium) Chinese Cabbage Salt Substitutes/Lite Salt
Nectarine(1 medium) Carrots, raw Salt Free Broth
Orange(1 medium) Dried Beans and Peas Yogurt
Orange Juice Greens, except Kale Snuff/Chewing Tobacco
Papaya (½ whole) Hubbard Squash
Pomegranate (1 whole) Kohlrabi
Pomegranate Juice Lentils
Prunes Legumes
Prune Juice White Mushrooms, cooked (½ cup)
Raisins Okra
Parsnips
Potatoes, white and sweet
Pumpkin
Rutabagas
Spinach, cooked
Tomatoes/Tomato products
Vegetable Juices”

I also have a list of food sensitivities, so I avoid those foods. If you do, too, you might want to cross those foods off your high potassium foods list if you just happen to have Bartter syndrome.

Time for a few personal notes here. Thank you all for your well wishes and good cheer. Via a clinical trial, I have been able to shrink the pancreatic cancer tumor by two thirds and bring my blood tumor marker down to BELOW normal. This raises my chances for a successful Whipple surgery from 50% to 70% and that’s before another round of chemotherapy with radiation added. Hopeful? You bet! I also wanted to remind you that the SlowItDownCKD series makes a wonderful graduation, wedding, and Father’s Day gift for those new to Chronic Kidney Disease, those not new to Chronic Kidney Disease, and those who would like to share CKD with others in their lives.

Until next week,

Keep living your life!

No Longer a Transfusion Virgin

I’ve been thinking about the similarities between Chronic Kidney Disease treatment and Pancreatic Cancer treatment… or, at least, my Pancreatic Cancer treatment. Some are superficial, like going to the Research Institute several days a week for chemotherapy and those on dialysis going to the dialysis center several days a week for dialysis.

Some are not. A current topic of similarity was an eye opener for me. I am 72 years old and have never had a transfusion before last Monday. I’d gone to the Research Institute where I’m part of a clinical trial for a simple non-chemotherapy day checkup. This supposedly two hour appointment turned into almost eight hours. Why?

If you can understand these labs, you’ll know. If not, no problem. You know I’ll explain.

Component Your Value Standard Range
  RBC 2.23 10ˆ6/uL 3.50 – 5.40 10ˆ6/uL
Hemoglobin 6.8 g/dL 12.0 – 16.0 g/dL
Hematocrit 19.7 % 36.0 – 48.0 %
RDW 16.0 % 11.5 – 14.5 %
Platelets 15 K/uL 130 – 450 K/uL

Let’s start at the top of the list. RBC stands for red blood cells. MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=5260 tells us:

“Red blood cells: The blood cells that carry oxygen. Red cells contain hemoglobin and it is the hemoglobin which permits them to transport oxygen (and carbon dioxide). Hemoglobin, aside from being a transport molecule, is a pigment. It gives the cells their red color (and their name).

The abbreviation for red blood cells is RBCs. Red blood cells are sometime simply called red cells. They are also called erythrocytes or, rarely today, red blood corpuscles.”

So it makes sense that if RBC is below the standard range (column on the right), the hemoglobin will also be. And where are RBCs produced? Let’s trot on over to the National Institute of Diabetes, Digestive, and Kidney Disease (NIKKD) at https://www.niddk.nih.gov/health-information/kidney-disease/anemia for the answer to that one:

“Healthy kidneys produce a hormone called erythropoietin (EPO). A hormone is a chemical produced by the body and released into the blood to help trigger or regulate particular body functions. EPO prompts the bone marrow to make red blood cells, which then carry oxygen throughout the body.

What causes anemia in chronic kidney disease?

When kidneys are diseased or damaged, they do not make enough EPO. As a result, the bone marrow makes fewer red blood cells, causing anemia. When blood has fewer red blood cells, it deprives the body of the oxygen it needs.”

Now, this is not saying all CKD patients will have anemia, although it is common is the later stages of the disease. Chemotherapy had a lot to do with this, too.

What about this hematocrit? What is that? I went to the University of Rochester’s Health Encyclopedia at https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=167&contentid=hematocrit for help here:

“This test measures how much of your blood is made up of red blood cells.

Normal blood contains white blood cells, red blood cells, platelets, and the fluid portion called plasma. The word hematocrit means to separate. In this test, your red blood cells are separated from the rest of your blood so they can be measured.

Your hematocrit (HCT) shows whether you have a normal amount of red blood cells, too many, or too few. To measure your HCT, your blood sample is spun at a high speed to separate the red blood cells.”

MedicalNewsToday at https://www.medicalnewstoday.com/articles/321568.php helps us understand the RDW or red cell distribution width:

“If the results of a CBC [Gail here: that’s the complete blood count.] show low levels of red blood cells or hemoglobin, this usually suggests anemia. Doctors will then try to determine the cause of the condition using the RDW and other tests.”

So, we’re back to anemia. By the way, cancer is one of the diseases that can cause high numbers on your RDW. CKD is not, but diabetes – one of the primary causes of CKD – is.

I added platelets to the list since they are such an integral part of your blood. MedLinePlus at https://medlineplus.gov/plateletdisorders.html explains succinctly just what they are and what they do:

“Platelets, also known as thrombocytes, are small pieces of blood cells. They form in your bone marrow, a sponge-like tissue in your bones. Platelets play a major role in blood clotting. Normally, when one of your blood vessels is injured, you start to bleed. Your platelets will clot (clump together) to plug the hole in the blood vessel and stop the bleeding. You can have different problems with your platelets:

If your blood has a low number of platelets, it is called thrombocytopenia. This can put you at risk for mild to serious bleeding. The bleeding could be external or internal. There can be various causes. If the problem is mild, you may not need treatment. For more serious cases, you may need medicines or blood or platelet transfusions….”

I had my second infusion of platelets along with my first transfusion last week.

I’ve offered a multitude of definitions today. The point here is that both CKD patients and chemotherapy patients (and others suffering from a host of maladies) may need transfusions.

Right. I haven’t discussed what a transfusion is yet. Dictionary.com at https://www.dictionary.com/browse/transfusion defines it a little simplistically for us:

“the direct transferring of blood, plasma, or the like into a blood vessel.”

The MayoClinic at https://www.mayoclinic.org/tests-procedures/blood-transfusion/about/pac-20385168 adds:

“Your blood will be tested before a transfusion to determine whether your blood type is A, B, AB or O and whether your blood is Rh positive or Rh negative. The donated blood used for your transfusion must be compatible with your blood type.”

That’s when we discovered my son-in-law and I have the same blood type. Nice to know… just in case, you understand.

Before I leave you today, I want to remind my USA readers that this is Memorial Day. Having married a veteran, I now understand that we are honoring those who gave their saves to preserve ours no matter how long ago or how recent. Please give them a moment of your thoughts.

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!