No Longer an Actor, Now I’m a Reviewer (Of Sorts)

Last month I received an email from Screen Media asking if I’d like to preview Chicken Soup for the Soul’s One Last Thing. It stars two actors I know about, “…Wendell Pierce (TV’s The Wire) and Jurnee Smollett-Bell (TV’s Underground) and is primarily set in Brooklyn.” Hmmm, two appealing actors AND it was set in Brooklyn. I still wasn’t sure so I emailed back asking if SlowItDownCKD was the intended recipient for this email. Once assured it was, I agreed. Hey, I’m always up for an adventure.

When I saw the movie, I understood. One story line in the movie deals with a kidney dysplasia patient’s need for a donor. That’s all I’ll say about the movie so I don’t ruin the story for you. In other words, you’ll get no spoiler alerts from me.

In addition to crying at the most poignant parts of the movie, my brain was working overtime. Granted the character suffered from a rare kidney disease, but so rare that I’d never heard of it? You can tell what’s coming, can’t you? If I hadn’t heard of it, have my readers? And that’s what I’ll be writing about today.

Okay now, let’s see what this rare kidney disease is. It made sense to me to go to one of the tried and true websites I usually go to for information. This is what The National Institute of Diabetes, Digestive, and Kidney Diseases, a part of the U.S. Department of Health and Human Services, at https://www.niddk.nih.gov/health-information/kidney-disease/children/kidney-dysplasia had to offer:

“Kidney dysplasia is a condition in which the internal structures of one or both of a fetus’ kidneys do not develop normally while in the womb. During normal development, two thin tubes of muscle called ureters grow into the kidneys and branch out to form a network of tiny structures called tubules. The tubules collect urine as the fetus grows in the womb. In kidney dysplasia, the tubules fail to branch out completely. Urine that would normally flow through the tubules has nowhere to go. Urine collects inside the affected kidney and forms fluid-filled sacs called cysts. The cysts replace normal kidney tissue and prevent the kidney from functioning.

Kidney dysplasia can affect one kidney or both kidneys. Babies with severe kidney dysplasia affecting both kidneys generally do not survive birth. Those who do survive may need the following early in life:

• blood-filtering treatments called dialysis
• a kidney transplant

Children with dysplasia in only one kidney have normal kidney function if the other kidney is unaffected. Those with mild dysplasia of both kidneys may not need dialysis or a kidney transplant for several years.

Kidney dysplasia is also called renal dysplasia or multicystic dysplastic kidney.”

They also offered some clarifying diagrams.

So now we know what it is, but what causes it? I went to MedicineNet at https://www.medicinenet.com/kidney_dysplasia/article.htm#what_is_kidney_dysplasia for the answer to this question.

“Kidney dysplasia may be caused by the mother’s exposure to certain drugs or by genetic factors. Pregnant women should talk with their health care providers before taking any medicine during their pregnancy. Drugs that may cause kidney dysplasia include prescription medicines, such as drugs to treat seizures and blood pressure medicines called angiotensin-converting enzyme (ACE) inhibitors and angiotensin receptor blockers (ARBs). A mother’s use of illegal drugs-such as cocaine-can also cause kidney dysplasia in her unborn child.

Kidney dysplasia can also have genetic causes. The disorder appears to be an autosomal dominant trait, which means one parent may pass the trait to a child. When kidney dysplasia is discovered in a child, an ultrasound examination may reveal the condition in one of the parents.

Several genetic syndromes that affect other body systems may include kidney dysplasia as one part of the syndrome. A syndrome is a group of symptoms or conditions that may seem unrelated but are thought to have the same cause-usually a genetic cause. A baby with kidney dysplasia might also have problems of the digestive tract, nervous system, heart and blood vessels, muscles and skeleton, or other parts of the urinary tract.

A baby with kidney dysplasia might have other urinary problems that affect the normal kidney. On the left, urine is blocked from draining out of the kidney. On the right, urine flows backward from the bladder into the ureter and kidney, a condition called reflux.

(Me, here: You’ll be able to figure out which was the cause of Jurnee Smollett-Belle’s character once you see the movie.)

Problems of the urinary tract that lead to kidney dysplasia might also affect the normal kidney. For example, one urinary birth defect causes blockage at the point where urine normally drains from the kidney into the ureter. Another birth defect causes urine to flow from the bladder back up the ureter, sometimes all the way to the kidney. This condition is called reflux. Over time, if these problems are not corrected, they can damage the one working kidney and lead to total kidney failure.”

I’m thankful this is a rare disease, but wondered just how rare it was. Back to NIKKD at the same URL as before:

“Scientists estimate that kidney dysplasia affects about one in 4,000 babies…^. This estimate may be low because some people with kidney dysplasia are never diagnosed with the condition.”

I’m not a numbers person, but that seems like a lot of babies.

Now, the biggie. What can be done before the need for dialysis or transplant rears its head? I went directly to Urology Care Foundation at http://www.urologyhealth.org/urologic-conditions/kidney-(renal)-dysplasia-and-cystic-disease/printable-version since the kidneys are part of your urologic system.

• “Treatment may only include symptom management.
• Monitoring should include blood pressure checks, kidney function tests, and urine testing for protein.
• Periodic ultrasound can be used to make sure the other kidney continues to grow normally and no other problems develop.
• Antibiotics may be needed for urinary tract infections.
• The kidney should be removed only if it causes pain or high blood pressure, or ultrasound is abnormal.”

The AAKP Conference I wrote about last week opened my eyes to how much I don’t know about other kidney diseases and those that might affect CKD. The result is that I’ve asked quite a few people and organizations to guest blog about those areas in which they are experts. Expect to see these guest blogs throughout the summer.

Until next week,

Keep living your life!

Advertisements

Coming Home

I’m not a joiner. I’ve never been one. That’s why I was so surprised that I joined the American Association of Kidney Patients… and even more surprised to find myself attending this year’s conference in Tampa Bay, Florida. Readers had been suggesting I do so for years, but I’m not a joiner. Let’s change that; I wasn’t a joiner. The AAKP conference made the difference.

What’s that you ask? Of course, you need to know what they are. This is from their website at https://aakp.org/,

“THE INDEPENDENT VOICE OF KIDNEY PATIENTS SINCE 1969™

The American Association of Kidney Patients is dedicated to improving the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.

Education

The American Association of Kidney Patients (AAKP) is recognized as the leader for patient-centered education – continually developing high quality, professionally written, edited and reviewed educational pieces covering every level of kidney disease.

Advocacy

For nearly 50 years, AAKP has been the patient voice – advocating for improved access to high-quality health care through regulatory and legislative reform at the federal level. The Association’s work has improved long term outcomes in both quality of health and the ability for patients and family members affected by kidney disease to lead a more productive and meaningful life.

Community

AAKP is leading the effort to bring kidney patients together to promote community, conversations and to seek out services that help maximize patients’ everyday lives.

An IRS registered, Sec. 501(C)(3) organization, AAKP is governed by a Board of Directors. The current board is comprised of dialysis patients, chronic kidney disease patients, [Me here: You did notice ‘chronic kidney disease patients,’ right?] transplant recipients, health care professionals and members of the public concerned with kidney disease. The board and membership are serviced by a staff of five employees under the direction of Diana Clynes, Interim Executive Director, at the AAKP National Office located in Tampa, Florida.”

What’s not mentioned here is that the organization was started by only six patients. I find that astounding, but I’ll let them explain their history:

“Founded by Patients for Patients

King County Hospital, New York

The American Association of Kidney Patients (AAKP) has a rich history in patient advocacy and kidney disease education. AAKP started in 1969 with six dialysis patients at King County Hospital in Brooklyn, New York. They wanted to form an organization that would elevate the kidney patient voice in national health care arena, provide patients with educational resources to improve their lives and give kidney patients and their family members a sense of community. They met twice a week in the hospital ward and while hooked up to primitive dialysis machines for 12 to 18 hours at a time they brainstormed, researched and eventually formed AAKP.

The group originally called themselves NAPH (National Association of Patients on Hemodialysis, which later changed to AAKP). AAKP joined forces with other patient groups to fight for the enactment of the Medicare End-Stage Renal Disease (ESRD) Program, testifying before congressional committees, seeking public support and creating a newsletter (the forerunner of today’s AAKP RENALIFE) to keep everyone informed. This effort was crowned with success in 1972 when Congress enacted the program that continues to provide Medicare funding for dialysis and kidney transplantation.

After winning the initial and critical battle for the Medicare ESRD Program, AAKP turned its attention to other important issues — the need to establish a secure national organization to preserve the visibility and influence of patients with Congress and to develop national, educational and supportive programs.

Today & Beyond

AAKP has grown into a nationally recognized patient organization that reaches over 1 million people yearly. It remains dedicated to providing patients with the education and knowledge necessary to ensure quality of life and quality of health.”

This former non-joiner has found her association. I originally avoided the conferences because I thought they would be focused only on dialysis and transplant patients. Boy, was I ever wrong. Here are some of the outbreak (small group) sessions that dealt with other aspects of kidney disease:

Social Media (You’re right: I signed up for that one right away since I identify as a CKD awareness advocate.)

Dental Health

How Kidney Disease Impacts Family Members

Managing the Early Stage of CKD

Understanding Clinical Trials

Treatment Options

Staying Active

Veterans Administration

Caregiver’s Corner

Living Well with Kidney Disease

Avoid Infections

Of course, there were many outbreak sessions for dialysis and transplant patients as well. And there were two opportunities to lunch with experts. That’s where I tentatively learned about governmental aspects of our disease. There were opportunities to learn about nutrition, medications, working, and coping. I’ve just mentioned a few of the 50 different topics discussed.

The general sessions, the ones everyone attended, informed us of what the government’s national policy had to do with kidney disease, legislation, nutrition, patient centered care, and innovation in care (Keep an eye out for Third Kidney, Inc.’s August guest blog.).

I have not covered even half of what was offered during the conference. Did I mention renal friendly food was available and you could dialyze near the hotel if need be? The exhibitors went beyond friendly and explaining their products to being interested in who you were and why you were there. This was the most welcoming conference I’d been to in decades.

AAKP President Paul Conway summed up my feelings about the conference when he was interviewed by The Tampa Bay Times on the last day of the conference,

“This meeting is a way for us to bring patients together and educate them on trends that could affect their own health.”

I met so many others who have kidney disease and so many others who advocate for different types of kidney disease and patients’ rights. I was educated about so many areas, especially those I previously had known nothing about, for example, legislation. It was like coming home. Would I attend again? You bet’cha. Would I urge you to attend? At the risk of being redundant, you bet’cha.

I was so excited about AAKP that I almost didn’t leave myself enough space to tell you about yet another freebie. The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 is no longer in print since it has been divided into SlowItDownCKD 2011 and SlowItDownCKD 2012. But I still have a desk copy. Let me know if you’d like it. My only restriction is that you have not received a free book from me before.

Until next week,

Keep living your life!

Sorry Spiderman, That was Webinars not Webshooters

So much has been going on in my world lately that it was hard to choose what to write about today. In addition to my family, there’s the experience of my first American Association of Kidney Patients Conference, PKD, KidneyX and the list goes on. It was hard to choose, that is, until the American Kidney Fund sent me the following information. They explain who they are, what they do, and why they hold their free monthly educational seminars. Good timing here since the next webinar is this Friday. I’ll let them take over for a while and write some more once they’re done.

Oh, wait. First we need to know what a webinar is. My favorite online dictionary, Merriam-Webster, at https://www.merriam-webster.com/dictionary/webinar defines this in the following way:

“a live online educational presentation during which participating viewers can submit questions and comments”

That means it’s real time; you have to be online to participate. Don’t worry if the time doesn’t work for you because AKF has former webinars on their websites. You just won’t be able to ask your own questions, although you will be able to hear the questions others have asked during the webinar and the answers they received. Okay, now we turn this section of the blog over to The American Kidney Fund.

“The American Kidney Fund (AKF) is a non-profit organization dedicated to helping people fight kidney disease and lead healthier lives.  Living with chronic kidney disease (CKD) or kidney failure is incredibly taxing, and can put strain on all elements of a person’s life. And although doctors are available for patients to ask questions about their disease, many kidney patients do not know what they should ask, and are left needing answers even after leaving a doctor’s appointment.

AKF believes every patient and caregiver has the right to understand what is going on with their health, or the health of their loved one, and how to best manage it. That is where we come in.

The American Kidney Fund hosts free, monthly, educational webinars meant for patients and caregivers. Each webinar explores a different topic relevant to living well with kidney disease. Since the webinar program’s launch in 2016, AKF has hosted over 27 webinars on many topics including nutrition, employment, insurance, transplant, exercise, heart disease, advocacy, pregnancy, mental health, and more.

Webinar speakers are carefully chosen based on their knowledge, and ability to connect with a patient audience. This ensures we deliver the highest quality of information in the best way. Some speakers are kidney patients or kidney donors themselves.  The webinars are delivered from a variety of perspectives so that the advice given is both relatable and reliable.

AKF aims to take complex topics and simplify the content without taking away from the quality of information.  In an effort to be inclusive of non-English speakers, AKF has hosted a webinar entirely in Spanish on preventing and treating kidney disease, and is in the process of translating even more webinars into Spanish.

One of the highlights of the American Kidney Fund webinars is the live Q&A session held during the last 15-20 minutes of each presentation, when the audience can ask their questions in real time and receive an immediate answer from our speaker. This creates a unique space for our attendees to interact anonymously with an expert in a judgement-free zone. We understand the time-demands of being a kidney patient or caregiver, which is why all our webinars, along with the PowerPoint slides, are also uploaded to the AKF website for on-demand viewing.

Our next webinar is on Friday, June 22 from 1-2pm (EST) and will discuss why phosphorus is an important nutrient for kidney patients to consider, and the best ways to manage phosphorus through diet and medicine.  Carolyn Feibig, the dietitian and speaker for this webinar is exceptionally knowledgeable and enthusiastic about her field. If you have questions about how to manage a CKD-friendly diet, this is your opportunity to learn more and to ask your questions.

After each webinar we ask for feedback and suggestions from our audience about future webinars.  We invite you to register now, and then share which topics you would like to hear about next. We hope you will use our webinars as a tool to live the healthiest life possible with kidney disease.

American Kidney Fund www.kidneyfund.org/webinars”

I looked at some of their past webinar topics and was impressed with the variety.

My office is abuzz. SlowItDownCKD 2013, both digital and print, is available on Amazon. Give it a few weeks before it appears on B&N.com. I’m excited because I vowed to separate the unwieldy, small print, indexless The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 into two separate books with a SlowItDownCKD title, index, and larger print just as I’d done with The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 (which is no longer available since it is now SlowItDownCKD 2011 and SlowItDownCKD 2012). That’s half way done now, boys and girls… I mean readers.

Here’s something a bit unusual: I have a request from a reader who has the rare kidney disease Calyceal Diverticulum. Rather than asking me to write about it, she’s looking for others with the same disease. Do we have any readers here with this disease? If so, we could make the blog a safe place to connect. Or you could email me and I’d pass on your information to her. Alternately, with her permission, I could pass her information to you. I can understand her need to communicate with others with the same disease, so please do let me know if you’d like to communicate with her.

And last, but not least, and I have to admit brain fog has me here, so bear with me if you’ve read this before. In digging through the morass of my desk, (I have been traveling a lot lately.) I uncovered a beta copy of SlowItDownCKD 2017. That means it has all the content, but I didn’t like the formatting so I re-did it. Would you like it? If so, just be the first one to contact me to let me know. Oh, one restriction: only those who haven’t received a free book from me before, please. I’d like to share the CKD information with as many people as possible.

Until next week,

Keep living your life!

 

 

PKD: That’s News to Me

For the last eight years, I’ve pretty much stuck to writing about Chronic Kidney Disease with an exception here or there. When I was at a pharmaceutical think tank to help the company understand how they could be more helpful to kidney patients, I met a woman with polycystic kidney disease (PKD).

I’d heard of it and knew it had to do with multiple cysts on the kidneys, but that’s all I knew. That got me to thinking. Why didn’t I know more and what more should I know about it? So I did what I do best: decided to write about it.

Right now, the former English teacher in me is begging to come out. Indulge me, please. Poly is a prefix meaning many. Cyst means an abnormal sac in the body which contains air, fluid, or a semi-solid substance. Thank you What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the definition of cyst. Ic is simply a suffix meaning of or about. Aren’t you glad I studied English at Hunter College of the City University of New York all those years ago?

Seriously now, I turned to PKD Info at https://www.pkdinfo.com/ only to discover there are two different kinds of polycystic kidney disease. Let’s start with a simple definition of the term PKD.

“PKD describes a group of genetic diseases that cause cysts to form and grow in the kidney. Genetic diseases are the result of changes, or mutations, in a person’s DNA, and can be passed from parent to child. In PKD, cysts are filled with fluid. Over time, they expand, making the kidneys grow larger. This makes it hard for the kidneys to function normally and can lead to kidney failure.”

As for the two different kinds, the PKD Foundation at https://pkdcure.org/what-is-pkd/ tells us:

“There are two types of PKD: autosomal dominant (ADPKD) and autosomal recessive (ARPKD). ADPKD is the more common type and affects more than 600,000 Americans and 12.4 million people worldwide. ARPKD is a rare form of the disease that occurs in 1 in 20,000 children worldwide.

A typical kidney is the size of a human fist and weighs about a third of a pound. PKD kidneys can be much larger, some growing as large as a football, and weighing up to 30 pounds each. The number of cysts can range from just a few to many. The size of the cysts can range from a pinhead to as large as a grapefruit. Although the primary sign of PKD is cysts in the kidneys, there are other symptoms that can occur in various areas of the body.”

I needed more information, especially about how the two types of PKD differ so I turned to my old standby The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/kidney-disease/polycystic-kidney-disease/autosomal-dominant-pkd  and found the following information:

“’Autosomal dominant’ means you can get the PKD gene mutation, or defect, from only one parent. Researchers have found two different gene mutations that cause ADPKD. Most people with ADPKD have defects in the PKD1 gene, and 1 out of 6 or 1 out of 7 people with ADPKD have a defective PKD2 gene….

Health care providers can diagnose people with PKD1 sooner because their symptoms appear sooner. People with PKD1 also usually progress more quickly to kidney failure than people with PKD2. How quickly ADPKD progresses also differs from person to person.”

Symptoms? What symptoms? The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/polycystic-kidney-disease/symptoms-causes/syc-20352820 answered that question:

“Polycystic kidney disease symptoms may include:

• High blood pressure
• Back or side pain
• Headache
• Increase in the size of your abdomen
• Blood in your urine
• Frequent urination
• Kidney stones
• Kidney failure
• Urinary tract or kidney infections”

Whoa! I’ve got at least four of those symptoms, so how do I know I don’t have PKD? Remember those wonderful people who elected SlowItDownCKD as one of the six best kidney blogs two years in a row? You’re right, it’s Healthline at https://www.healthline.com/health/polycystic-kidney-disease#diagnosis. As they explained:

“Because ADPKD and ARPKD are inherited, your doctor will review your family history. They may initially order a complete blood count to look for anemia or signs of infection and a urinalysis to look for blood, bacteria, or protein in your urine.

To diagnose all three types of PKD, your doctor may use imaging tests to look for cysts of the kidney, liver, and other organs. Imaging tests used to diagnose PKD include:

• Abdominal ultrasound. This noninvasive test uses sound waves to look at your kidneys for cysts.
• Abdominal CT scan. This test can detect smaller cysts in the kidneys.
• Abdominal MRI scan. This MRI uses strong magnets to image your body to visualize kidney structure and look for cysts.
• Intravenous pyelogram. This test uses a dye to make your blood vessels show up more clearly on an X-ray.

Did I just read THREE types of PKD? I did. Maybe I’d better find out what the third one is. To do so, I turned to News Medical at https://www.news-medical.net/health/Polycystic-Kidney-Disease-vs-Acquired-Cystic-Kidney-Disease.aspx.

“The cause of ACKD is not fully known, and contrary to PKD, it tends to develop after a patient has had chronic kidney disease for some time – most commonly when they are undergoing renal dialysis to clean the blood (for example, in end stage renal disease). The cysts are created by the build-up of waste products and the deteriorating filtration in the kidneys.”

ACKD is Acquired Cystic Kidney Disease. It seems I have nothing to worry about at this point in my CKD, but I’m wondering how many of you know if there is PKD in your family history. Maybe it’s time to find out. Notice none of the tests are invasive. You know, of course, that we’ve just scratched the surface of PKD information today, right?

I did have cysts show up in both of my kidneys and my liver, but they were very small despite some growth being noticed and there were very few of them. I feel like I’ve dodged a bullet.

How are you beating the heat this summer? I’m hiding in my air conditioned office separating The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 into two less unwieldy books each with larger print and an index. I’ll let you know when SlowItDownCKD 2013 and SlowItDownCKD 2014 are available. Surely you’ve noticed that The Books of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 is no longer for sale. That’s because it has now been separated into SlowItDownCKD 2011 and SlowItDownCKD 2012.

Until next week,

Keep living your life!

Last Week, The Country… This Week, The World

Last week, I wrote about a U.S. clinical trial program, AllofUs Research Program. This week we’re going global. Huh? What’s that, you ask. It’s KidneyX.

I can just feel you rolling your eyes. (Ask my children if you don’t think I can do that.)  Hold on a minute and I’ll let KidneyX explain what they are from their website at http://www.kidneyx.org.

“The Kidney Innovation Accelerator (KidneyX) is a public-private partnership to accelerate innovation in the prevention, diagnosis, and treatment of kidney diseases. KidneyX seeks to improve the lives of the 850 million people worldwide currently affected by kidney diseases by accelerating the development of drugs, devices, biologics and other therapies across the spectrum of kidney care including:

Prevention

Diagnostics

Treatment”

I know, I know. Now you want to know why you should be getting excited about this program you don’t know much about. Let’s put it this way. There hasn’t been all that much change in the treatment of kidney disease since it was recognized. When was that? This question was answered in SlowItDownCKD 2015:

“…nephrologist Veeraish Chauhan from his ‘A Brief History of the Field of Nephrology’ in which he emphasizes how young the field of modern nephrology is.

‘Dr. Smith was an American physician and physiologist who was almost singlehandedly responsible for our current understanding of how the kidneys work. He dominated the field of twentieth century Nephrology so much that it is called the “Smithian Era of Renal Physiology“ .He wrote the veritable modern Bible of Nephrology titled, The Kidney: Structure and Function in Health and Disease. This was only in 1951.”

1951?????? It looks like I’m older than the history of kidney disease treatment is. Of course, there were earlier attempts by other people (Let’s not forget Dr. Bright who discovered kidney disease in the early 1800s.) But treatment?

Hmmm, how did Dr. Smith treat kidney disease I wondered as I started writing about KidneyX.

Clinics in Mother and Child Health was helpful here. I turned to their “A Short History of Nephrology Up to the 20^th Century” at https://www.omicsonline.org/open-access/a-short-historic-view-of-nephrology-upto-the-20th-century-2090-7214-1000195.php? and found this information:

“His NYU time has been called the Smithian Era of renal physiology for his monumental research clarifying glomerular filtration, tubular absorption, and secretion of solutes in renal physiology …. His work established the concept that the kidney worked according to principles of physiology both as a filter and also as a secretory organ. Twenty-first century clinical nephrology stems from his work and teaching on the awareness of normal and abnormal functioning of the kidney.”

I see, so first the physiology and function of the kidney had to be understood before the disease could be treated.

 

I thought I remembered sodium intake as part of the plan to treat CKD way before the Smithian Era. I was wrong. This is also from SlowItDownCKD 2015:

“With all our outcry about following a low sodium diet, it was a bit shocking to realize that when this was first suggested as a way to avoid edema in 1949, it was practically dismissed. It wasn’t until the 1970s that the importance of a low sodium diet in Chronic Kidney Disease was acknowledged.”

Aha! So one of our dietary restrictions wasn’t accepted until the 1970s. I was already teaching high school English by then. Things did seem to be moving slowly when it came to Chronic Kidney Disease treatment.

Let’s see if I can find something more recent. This, from the National Kidney Fund at https://www.kidney.org/professionals/guidelines/guidelines_commentaries sounds promising, but notice that this has only been around since 1997. That’s only 21 years ago. It has been updated several times, but there doesn’t seem to be that much difference… or maybe I just didn’t understand the differences.

“The National Kidney Foundation Kidney Disease Outcomes Quality Initiative (NKF KDOQI)™ has provided evidence-based clinical practice guidelines for all stages of chronic kidney disease (CKD) and related complications since 1997…. KDOQI also convenes a small work group of U.S. based experts to review relevant international guidelines and write commentary to help the U.S. audience better understand applicability in their local clinical environment.

Clinical Practice Guidelines are documents that present evidence-based recommendations to aid clinicians in the treatment of particular diseases or groups of patients. They are not intended to be mandates but tools to help physicians, patients, and caregivers make treatment decisions that are right for the individual. With all guidelines, clinicians should be aware that circumstances may appear that require straying from the published recommendations.”

Time to get back to KidneyX before I run out of room in today’s blog. Here’s more that will explain their purpose:

“Principles

• Patient-Centered Ensure all product development is patient-centered
• Urgent Create a sense of urgency to meet the needs of people with kidney diseases
• Achievable Ground in scientifically-driven technology development
• Catalytic Reduce regulatory and financial risks to catalyze investment in kidney space
• Collaborative Foster multidisciplinary collaboration including innovators throughout science and technology, the business community, patients, care partners, and other stakeholders
• Additive Address barriers to innovation public/private sectors do not otherwise
• Sustainable Invest in a diverse portfolio to balance risk and sustain KidneyX”

This may explain why think tanks for kidney patients, all types of kidney patients, are beginning to become more prevalent.

Let’s go back to the website for more information. This is how they plan to succeed:

“Building off the success of similar public-private accelerators, KidneyX will engage a community of researchers, innovators, and investors to bring breakthrough therapies to patients by:

Development

Driving patient access to disruptive technologies via competitive, non-dilutive funding to innovators.

Coordination

Providing a clearer and less expensive path to bringing products to patients and their families.

Urgency

Creating a sense of urgency by spotlighting the immediate needs of patients and their families.”

One word jumped out at me: urgency. I am being treated for my CKD the same way CKD patients have been treated for decades…and decades. It’s time for a change.

One thing that doesn’t change is that we celebrate Memorial Day in the U.S. every year. And every year, I honor those who have died to protect my freedom and thank my lucky stars that Bear is not one of them. There is no way to describe the gratitude those of us who haven’t served in the military – like me – owe to those who have and lost their lives in doing so.

Until next week,

Keep living your life!

All of Me, uh, Us

When I was a little girl, I liked to listen to my father whistle ‘All of Me,’ written by Marks and Simon in 1931 when Charlie, my father, was just 16. Only a few years later, it became a sort of love language for my mother and him. Enter a former husband of my own and my children. When my folks visited from Florida and my then husband’s side of the family journeyed over to Staten Island from Brooklyn to visit them, they all sang the song with great emotion. (By then, Bell’s palsy had robbed my father of the ability to whistle.)

To this day, I start welling up when I hear that song. But then I started thinking about the lyrics:

“All of me
Why not take all of me?”

Suddenly, it popped. For us, those with chronic kidney disease, it should be:

“All of us

Why not take all of us?”

For research purposes. To “speed up health research breakthroughs.” For help in our lifetime. To spare future generations whatever it is we’re suffering… and not just for us, but for our children… and their children, too.

The National Institutes of Health has instituted a new research program for just that purpose, although it’s open to anyone in the U.S. over the age of 18 whether ill with any disease or perfectly healthy. While only English and Spanish are the languages they can accommodate at this time, they are adding other languages.

I’m going to devote most of the rest of this blog to them. By the way, I’m even more inclined to be in favor of this program because they launched on my first born’s birthdate: May 6. All of Us has its own inspiring welcome for you at https://launch.joinallofus.org/

This is how they explain who they are and what they intend to do:

“The goal is to advance precision medicine. Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.

To get there, we need one million or more people. Those who join will share information about their health over time. Researchers will study this data. What they learn could improve health for generations to come. Participants are our partners. We’ll share information back with them over time.”

You’ll be reading more about precision medicine, which I’ve written about before, in upcoming blogs. This is from All of Us’s website at https://www.joinallofus.org/en, as is most of the other information in today’s blog, and makes it easy to understand just what they are doing.

How It Works

Participants Share Data

Participants share health data online. This data includes health surveys and electronic health records. Participants also may be asked to share physical measurements and blood and urine samples.

Data Is Protected

Personal information, like your name, address, and other things that easily identify participants will be removed from all data. Samples—also without any names on them—are stored in a secure biobank.

Researchers Study Data

In the future, approved researchers will use this data to conduct studies. By finding patterns in the data, they may make the next big medical breakthroughs.

Participants Get Information

Participants will get information back about the data they provide, which may help them learn more about their health.

Researchers Share Discoveries

Research may help in many ways. It may help find the best ways for people to stay healthy. It may also help create better tests and find the treatments that will work best for different people.

I’m busy, too busy to take on even one more thing. Or so I thought. When I read the benefits of the program (above) and how easy it is to join (below), I realized I’m not too busy for this and it is another way to advocate for Chronic Kidney Disease awareness. So I joined and hope you will, too.

Benefits of Taking Part

Joining the All of Us Research Program has its benefits.

Our goal is for you to have a direct impact on cutting-edge research. By joining the program, you are helping researchers to learn more about different diseases and treatments.

Here are some of the benefits of participating in All of Us.

Better Information

We’re all human, but we’re not all the same. Often our differences—like age, ethnicity, lifestyle habits, or where we live—can reveal important insights about our health.

By participating in All of Us, you may learn more about your health than ever before. If you like, you can share this information with your health care provider.

Better Tools

The goal of the program is better health for all of us. We want to inspire researchers to create better tools to identify, prevent, and treat disease.

You may also learn how to use tools like mobile devices, cell phones and tablets, to encourage healthier habits.

Better Research

We expect the All of Us Research Program to be here for the long-term. As the program grows, the more features will be added. There’s no telling what we can discover. All thanks to participants like you.

Better Ideas

You’re our partner. And as such, you are invited to help guide All of Us. Share your ideas and let us know what works, and what doesn’t.

Oh, about joining:

Get Started – Sign Up

Here’s a quick overview of what you’ll need to do to join.

1

Create an Account

You will need to give an email address and password.

2

Fill in the Enrollment and Consent Forms

The process usually takes 18-30 minutes. If you leave the portal during the consent process, you will have to start again from the beginning.

3

Complete Surveys and More

Once you have given your consent, you will be asked to complete online health surveys. You may be asked to visit a partner center. There, you’ll be asked to provide blood and urine samples and have your physical measurements taken. We may also ask you to share data from wearables or other personal devices.

Before I leave you today, I have – what else? – a book give away. The reason? Just to share the joy that’s walked into my life lately. It’s easy to share the troubles; why not the joys? If you haven’t received one of my books in a giveaway before, all you have to do is be the first person to let me know you want this copy of SlowItDownCKD 2017.

 

I need to get back to that online health survey for All of Us now.

Until next week,

Keep living your life!

 

Something’s Fishy Here

I saw this headline the other day: Another Nail in the Coffin for Fish Oil Supplements. When I read the article, I realized it was referring to fish oil supplements for heart problems. You can read it for yourself at  https://jamanetwork.com/journals/jama/fullarticle/2679051. By the way, JAMA is the Journal of the American Medical Association.

But then I wondered why I’ve been taking it all these years since I don’t have cardiology problems.  Hmmm, I do have osteoarthritis and can’t take NSAIDS. In What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, NSAIDS are explained this way:

“Non-steroidal anti-inflammatory drugs such as ibuprofen, aspirin, Aleve, or naproxen usually used for arthritis or pain management, can worsen kidney disease, sometimes irreversibly.”

Okay, so I don’t take NSAIDS or fish oil supplements for heart problems, but I do take fish oil supplements for osteoarthritis. Well, that’s good since my favored medical food for osteoarthritis – Limbrel – is still in recall by the FDA for possibly causing liver problems. Who wants both liver and kidney problems? Not me.

Anyhoo (as I’ve seen it written), that got me to thinking about osteoarthritis. This is from SlowItDownCKD 2016:

“According to The U.S. National Library of Medicine at http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0024677/:

‘Arthritis is a general term for conditions that affect the joints and surrounding tissues. Joints are places in the body where bones come together, such as the knees, wrists, fingers, toes, and hips. The two most common types of arthritis are osteoarthritis and rheumatoid arthritis.”

I’ve since discovered there’s also psoriatic arthritis. All of these are inflammatory diseases. This is from this week’s newly published SlowItDownCKD 2017 (How about a review on Amazon.com or B&N.com as long as I’ve mentioned the book?):

“Arthritis is an inflammatory disease; psoriasis is an inflammatory disease; and Chronic Kidney Disease is an inflammatory disease. The common factor here is obvious – inflammatory disease.”

Bingo! I take the fish oil supplements for inflammation. Before I forget, inflammation is the topic of one blog or another – and usually several – in each of the books in the SlowItDownCKD series. Wikipedia’s definition helps to explain why:

“Inflammation is part of the complex biological response of body tissues to harmful stimuli, such as pathogens, damaged cells, or irritants, and is a protective response involving immune cells, blood vessels, and molecular mediators. The function of inflammation is to eliminate the initial cause of cell injury, clear out necrotic cells and tissues damaged from the original insult and the inflammatory process, and initiate tissue repair.”

Keep in mind, though, that anyone can edit a Wikipedia entry.

Since I’m writing about inflammation and CKD, I was thrilled to find this in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“By the way, are you taking Omega 3 {Fish oil} supplements?  There’s a theory it helps retard the progress of CKD.”

Aha! Now to the heart… I mean the kidneys… of the matter. How do Omega 3 supplements retard the progress of CKD?

Let’s lead off our answer with this quote from the #NephMadness 2017: Nutrition Region article in the March issue of The American Journal of Kidney Diseases at https://ajkdblog.org/2017/03/07/nephmadness-2017-nutrition-region/

“There is some evidence that omega-6 is proinflammatory and omega-3 are anti-inflammatory.”

Of course there’s much more to the article, but it gets pretty technical.

“What’s omega-6?” you ask. I went to my long term buddy The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/heart-disease/expert-answers/omega-6/faq-20058172 for some help in explaining.

“Your body needs fatty acids and can make all but two of them, which is why they are called essential fatty acids. Linoleic and linolenic acids are derived from foods containing omega-6 and omega-3 fatty acids, respectively, which serve different functions in the body. Some of these fatty acids appear to cause inflammation, but others seem to have anti-inflammatory properties.”

But we’re getting far afield from the anti-inflammatory properties of omega-3 that can help retard the progress of CKD. I decided to see what the natural health community had to say about this and discovered the following in Healthy Fellow at http://www.healthyfellow.com/742/fish-oil-and-kidney-health/ :

“However, based on what we know now, it seems that fish oil supports both cardiovascular and renal health in part by moderating blood pressure, heart rate and triglycerides in at-risk patients.”

This was back in 2011, but look at all it tells us. We know that hypertension is the number two cause of CKD. Moderating our blood pressure will (hopefully) slow down the progression of the decline of our kidney function. Kidney & Urology Foundation of America, Inc. at http://www.kidneyurology.org/Library/Kidney_Health/High_Blood_Pressure_and_Kidney_Disease.php explains this succinctly:

“High blood pressure makes your heart work harder and, over time, can damage blood vessels throughout your body. If the blood vessels in your kidneys are damaged, they may stop removing wastes and extra fluid from your body. The extra fluid in your blood vessels may then raise blood pressure even more. It’s a dangerous cycle.”

And heart rate? The conclusion of a study published in the Journal of Nephrology reads:

“Heart rate is an independent age-dependent effect modifier for progression to kidney failure in CKD patients.”

You can read the entire study at https://www.researchgate.net/publication/232714804_Heart_rate_age_and_the_risk_of_progression_to_kidney_failure_in_patients_with_CKD.

Then there are triglycerides. I included this information from the American Kidney Fund in SlowItDownCKD 2012.

“Your triglycerides are also important. People with high triglycerides are more at risk for kidney disease, heart disease and stroke.”

I am convinced. I will be one of those who continues taking my fish oil supplements to get in that omega-3 which is going to help me with inflammation which – in turn – will help me slow down the progression in the decline of my kidney function. How about you?

We’re going to do this a little differently this time. To celebrate the publication of SlowItDownCKD 2017, the first person who hasn’t won a book giveaway yet and can correctly tell me if my new grandchild is a boy or a girl will win a copy of Portal in Time. I hope you like time travel romances.

Until next week,

Keep living your life!

Joy to the World

As Three Dog Night sang in Hoyt Axton’s song:

“Joy to the world
All the boys and girls now
Joy to the fishes in the deep blue sea
Joy to you and me”

Turn up your speakers and give a listen. See if you don’t feel more joy just from listening. Thanks to Three Dog Night for placing that grin back on my face when it’s gotten lost… and to YouTube, too.

I’ve written about what stress, grief, and shock do to your body, but with recent events I have reason to wonder what happiness does to your body. The birth of our first grandchild has revealed levels of joy I never knew existed. Add to that our youngest’s engagement and you’ll find me floating at least three feet above the ground most of the time.

I did my usual poking around and found some answers.

Calgary Psychology at http://www.calgarypsychology.com/happiness/correlation-health-happiness has some information for us, although it’s not as recent as I’d like it to be since it was published in 2010:

“A study in the journal Proceedings of the National Academy of Sciences examined the link between happiness and a number of health factors in 200 Caucasian adults, age 45-59 years, all of whom worked for the government in London, England. The study assessed each participant on a work day and weekend day, measuring them at work and play for a number of criteria including blood pressure, heart rate and stress hormone (cortisol) levels. Participants were measured under normal conditions and after a mental stress test. Under each condition participants ranked their happiness on a scale of 1 (lowest) to 5 (highest). There were no differences in happiness between people who were married or single, male or female or of varying socioeconomic status; however the happiest participants had the best results across the board for the health markers. I.e. happier people had lower heart rates, and an average of 32% lower levels of cortisol which can have a direct effect on other elements such as blood sugar.”

Cortisol? Anyone remember what that is? Let’s have a reminder, please. I found this in SlowItDownCKD 2016. It’s from Reference.com at https://www.reference.com/science/function-adrenal-gland-72cba864e66d8278.

“Cortisol is a hormone that controls metabolism and helps the body react to stress, according to Endocrineweb. It affects the immune system and lowers inflammatory responses in the body. …”

Want a little reminder about metabolism? I do. According to Dr. Ananya Mandal from News Medical Life Sciences at https://www.news-medical.net/life-sciences/What-is-Metabolism.aspx:

“Metabolism is a term that is used to describe all chemical reactions involved in maintaining the living state of the cells and the organism. Metabolism can be conveniently divided into two categories:

• Catabolism – the breakdown of molecules to obtain energy
• Anabolism – the synthesis of all compounds needed by the cells”

Aha! So joy or being happy helps the body produce the hormone that obtains energy and synthesizes what we need to live. Now I get it why I actually feel better physically when I’m happy. I was in the throes of bronchitis when my grandson was born and started getting better right away. Magic? Nope, just plain joy at work in my body.

Notice joy may have an affect via cortisol on your blood sugar, too. Blood sugar ? Why is that important? The following is from a study published in The American Journal of Kidney Disease that was included in SlowItDownCKD 2011

“Good control of blood sugar, blood pressure, cholesterol levels and body weight can delay the loss of kidney

function.”

And lower heart rates? How does that help us? I’ve don’t think I’ve written about that so I hopped right over to my longtime favorite the Mayo Clinic at https://www.mayoclinic.org/healthy-lifestyle/fitness/expert-answers/heart-rate/faq-20057979.

“A normal resting heart rate for adults ranges from 60 to 100 beats a minute. Generally, a lower heart rate at rest implies more efficient heart function and better cardiovascular fitness.”

Good news. Being happy – joyous in my case – is good for the heart, which automatically means it’s good for the kidneys since your heart health has a lot to do with your kidney health and vice-versa.

Let’s not forget that the lower levels of cortisol joy causes “lowers inflammatory responses in the body.” Chronic Kidney Disease is an inflammatory disease. I love it! Just by being happy, I’m helping myself with my CKD.

As the late night television commercials cautioned us once up on a time: But wait, there’s more. I turned to the Greater Good Science Center based at UC Berkeley. According to the website, they, “provide a bridge between the research community and the general public.”

That’s where I found this quote from a 2015 article at: https://greatergood.berkeley.edu/article/item/six_ways_happiness_is_good_for_your_health.

“Love and happiness may not actually originate in the heart, but they are good for it. For example, a 2005 paper found that happiness predicts lower heart rate and blood pressure. In the study, participants rated their happiness over 30 times in one day and then again three years later. The initially happiest participants had a lower heart rate on follow-up (about six beats slower per minute), and the happiest participants during the follow-up had better blood pressure.”

Oh, blood pressure. This is also called hypertension and is defined in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease this way:

“A possible cause of CKD, 140/90mm Hg is currently considered hypertension, a risk factor for heart disease and stroke, too.”

That book was written in 2010. The guidelines changed in November of last year. Take a look at the infogram from the American Heart Association. I’ve also learned that hypertension is the second leading cause of CKD.

What’s the first? You guessed it: diabetes or blood sugar that is not controlled. I am overjoyed at the results of my poking around about joy. By being fully present to the joy in my life, by simply feeling that joy, while I personally can no longer prevent my CKD, I can further slow down the progression of the decline in my kidney function. Being happy is also helping to prevent diabetes from entering my life and working on keeping my blood pressure closer to where it belongs.

This joy just goes on and on for me. This year alone, it’s been celebration after celebration: birthdays, anniversaries, the birth, the engagement, triumphs for those I love. My list grows and grows. Why not consider a little joy for your body’s sake, if not for your mental state?

Until next week,

Keep living your life!

Unforgetting Us

Again, and again you’ve heard me rant about why we, as CKD patients, are not diagnosed earlier so we can start treating our Chronic Kidney Disease with – at least – life style changes earlier. That could help us slow down the progression of decline in our kidney function. I maintain that if only my primary care physician had told me when he first noticed that 39% GFR, maybe I wouldn’t be in stage 3 of 5. Maybe those now on dialysis or searching for a transplant wouldn’t be in the position they are, either.

It looks like our doctors are starting to feel the same way. Thank goodness. As a CKD Awareness Advocate, I’ve met others with the same advocacy. Robin is a doctor who feels the same, and someone I consider a friend. When I read her article, I jumped at the chance to guest blog it since she has the understanding of the medicalese that can frustrate the rest of us. Without further ado, Dr. Robin Rose…

Doctor, doctor give me this news: Primary care and CKD

Nephrology News & Issues, March 2018
Robin Rose, MD

Everyone’s mind jumps right to end-stage renal disease and dialysis when kidney disease is mentioned, even among clinicians. By the time a patient needs dialysis, pathology has been smoldering, sometimes for prolonged periods of time. Nephrology gracefully manages later-stage kidney disease, but it seems the incipient cases remain in the shadows. In general practice, kidneys are often ignored.

What I want to know is this: How can we effectively forge a path between nephrology and primary care — take the reins and together harness the epidemic, starting early while the pathology of the disease may be more easily addressed?

Too many patients and too many of their primary care providers are simply unaware of renal status. The staggering number of stage 3 chronic kidney disease (CKD) cases dramatically dwindles by stage 4, and CKD exacerbates so many underlying pathologies. Morbidity leads to mortality, often without recognition of underlying kidney damage as the prominent culprit. With the worldwide nephrologist shortage, and clearly with the high cost of end-stage care, it may well be time to expand the renal education and early/moderate CKD clinical savvy in primary care.

Build CKD recognition

As a physician, I recognize pharmaceutical options as a small part of longitudinal CKD care. The point of early diagnosis is assisting patients with the arduous and necessary journey to lifestyle change. Primary care has embraced this supportive role for other diagnoses, such as cancer, diabetes, heart disease, etc. This type of synergistic/collaborative care — reinforcing specialist input, following each person with his or her myriad issues — is the perfect fit for CKD.

How do we communicate to make our generalist and specialist intent merge into one clear target — enhanced patient quality of life? How can we make this work — to commence having a serious problem-solving conversation?

The literature suggests early nephrologist involvement improves long-term outcomes. Proactive primary care offers longitudinal guidance for making the enormous lifestyle changes in diet, exercise, stress management, hydration, sleep and toxic exposures, while offering psychological counseling that is required to achieve such changes. The cross-over benefits for patients’ other diagnoses is well known.

This concept of primary care nephrology could unfold into clinical reality as a professional, collaborative cooperation. With the diagnostic refinement of the nephrologist, a primary care physician can guide patients with CKD with the balancing act of comorbidities, medication management and optimal kidney lifestyle.

Likewise, what this family physician recognizes as critically useful from the consulting nephrologist is the expert focus on pathology with a diagnosis and back-up. We must agree that things like diet, exercise, sleep, stress and toxins have longitudinal importance for our patients with CKD — important enough for the primary care physician to make time with motivated patients to assess and co-discover actionable adaptations. Comorbidities with time will certainly guide the process. The success of this requires supportive enthusiasm from the specialist.

Vision of collaboration

Here is an example: A 46-year-old perimenopausal working single mother, with a history 12 years prior of pregnancy-induced hypertension and diabetes, has moderate proteinuria and a creatinine of 1.2. A nephrology consult will crystallize her individual needs. A primary care plan will address medications, CKD lifestyle needs and illuminate the notable overlap of benefits for her other diagnoses.

During the course of four visits looking at her stress, relationship to food and exercise needs, she exhibits admirable motivation, paying attention to what and how she eats and enjoying a lunchtime walking program. Reinforcing these successes while addressing medications, diet, sleep, etc. every 3 months offers an opportunity to protect nephrons and proceed further in the adaptations needed.

At this time, nephrologists cannot assume this is taking place in all primary care settings. Primary care providers, guiding patients with CKD safely through commonplace medical scenarios — like infectious illnesses, traumatic injuries, surgeries, travel and stress — need to grasp a breadth of nephrology basics. Our patients with CKD are at increased risk of acute kidney injury. Astute protection means we save nephrons. This author would welcome renal rotations at all levels of medical training, with a facet of focus on longitudinal outpatient, early and moderate CKD care. This vision of collaboration, with a commitment to early diagnosis and intervention, offers the opportunity to learn how to guide patients to a less inflammatory lifestyle.

The urgency is there. Can we talk?

• For more information:
• Robin Rose, MD, is a semi-retired family physician with a long-time interest in chronic illness and the role of lifestyle, with an interest in incipient and moderate CKD as a current focus. She lives in Molokai, Hawaii.

Disclosure: Rose reports no relevant financial disclosures.

Here’s a suggestion. Why not bring this article to your primary care physician? It could be that renal disease has never really crossed his mind despite the fact that 90% of the 31 million people in the U.S. who have CKD are unaware they do. You may not benefit from this – already having been diagnosed – but the next patient may… and the one after that… and the one after that…keep going.

Until next week,

Keep living your life!

Part Two of the Two Parter for National Kidney Month

Are you ready for the most important sentence in the mytherapyapp.com guest blog which was published on World Kidney Day on March 8th? This was the day that celebrated Chronic Kidney Disease and Women’s Health – during March’s National Kidney Month and National Women’s Month. Well then, here it is, along with the rest of the mytherapyapp.com guest blog.

Let me be clear: you must have functioning kidneys or dialysis or a transplant to live.

When there’s nothing doing the jobs of the kidneys, there’s no life. Your kidneys filter about 200 quarts of your blood each day. They are the organs that prevent toxic build up in your body by turning these toxins – along with other waste products – into urine. They are responsible for regulating your electrolytes and your blood pressure. These are only three of the many necessary jobs they do.

That would explain why hypertension, also called high blood pressure, is the second leading cause of CKD. Sometimes what is commonly considered medication for hypertension is prescribed for CKD whether or not you have high blood pressure.

The Simple Tests That Could Save Your Life

I’m originally from New York. Do you remember the old lottery advertising slogan from NY, You’ve got to be in it to win it? The same is true here. If you don’t know you have CKD, you won’t be treating it.

You’ll probably feel the needle for the blood test, but that’s a very, very small price to pay for discovering CKD. I have no idea how long I had it before my diagnosis. I could have gone not knowing until I reached end stage which would mean dialysis to perform the jobs my kidneys couldn’t, or a transplant, or… my demise.

The treatment is nothing horrendous. It depends upon your body chemistry (your Comprehensive Metabolic Panel – a blood test – will give you a good picture of that) and your nephrologist’s suggestions. Usually, it’s the hypertension medication mentioned above, a special diet, treating diabetes if you have it, exercise, adequate sleep, and avoiding stress where you can. You can live with that, can’t you? Especially if it means your life.

When I was teaching Essay Writing on the college level, it was a rule never to end your essay with the words, “In conclusion.” But I also taught that you needed to learn the rules, so you could break them.

So… in conclusion, please, please go for the blood and urine tests.

You really don’t need the fatigue, brain fog, or bone problems undiagnosed CKD can cause, much less dialysis or a transplant. Catch the disease early, treat it, and keep living your life!

---

We would like to thank Gail for contributing this post.
If you would like your story featured on the MyTherapy blog, contact Dan here.

---

Since being diagnosed with chronic kidney disease, Gail has channeled her expertise in research writing to share information and support those in a similar situation to the one she was in over a decade ago. She is a serial author on CKD, and writes a blog, SlowItDownCKD.

What’s that? But National Kidney Month runs all of March. You’re right, which is why eCareDiary.com interviewed me on March 6th.

Coping with Chronic Kidney Disease

eCareDiary spoke to Gail Rae-Garwood, author of three time award winning blog, SlowItDownCKD about how she discovered she had chronic kidney disease and steps she’s taken to maintain the level of kidney function.  

This is the link: https://www.ecarediary.com/CommentRadioShow.aspx?id=1238. You’ll also find the show embedded on my website: www.gail-raegarwood.com.  Did the interview prompt any questions about CKD for you? Ask them at https://www.ecarediary.com/ExpertQA.aspx. I’ll be the expert answering them. I have to admit, it’s still hard for me to own being an expert, a lay expert, that is. I was simply a CKD patient with lots of questions, the wherewithal to answer them, and a great desire to share what I’d learned so that no one else was as terrified at their CKD diagnose as I was.

 

The National Kidney Foundation has a  free testing program. This is the information from their website. The Find a KEEP Healthy Event in your area link if live.

DO YOU NEED A KIDNEY HEALTH CHECK?

 

Come to the National Kidney Foundation’s new KEEP Healthy program and find out. One in three Americans is at risk for developing kidney disease. KEEP Healthy will help you learn if you’re the one.

Find a KEEP Healthy Event in your area 

What is KEEP Healthy?

The National Kidney Foundation’s community-based initiative to educate about the kidneys, risk factors for kidney disease, and steps to take to keep kidneys healthy and reduce risk.

What does the KEEP Healthy Check-up Include?

• Risk Survey
• Body Mass Index (BMI): Height and Weight Measurements
• Blood pressure check
• ACR urine test for albumin (a type of protein) – For individuals at risk only!
• Free educational materials
• Opportunity to speak with a health care professional

Who’s at Increased Risk for Kidney Disease?

• Anyone with high blood pressure, diabetes
• Anyone with a family history of kidney failure
• African-Americans, Hispanics, Asians, Pacific Islanders and American Indians
• Anyone age 60 and older
• Individuals who are obese (body mass index of 30 or above)

What should you do next?

• When you visit your doctor, share what you’ve learned about your risk factors for kidney disease
• Follow healthy lifestyle advice
• If you have any questions, call our NKF Cares patient hotline toll-free at 1-855-NKF-Cares (653-2273).

Locally, the Kidney Foundation of Arizona provides a similar service with a screening coming up this Saturday. By the way, the Register Online link is live:

PATH TO WELLNESS SCREENING

Saturday March 24th, 2018

Free Public Health Screenings

Next Path to Wellness Screening:
Saturday, March 24, 2018
South Phoenix Missionary Baptist Church | 2006 E. Broadway Rd. Phoenix, AZ 85040

REGISTER ONLINE

HACER UNA CITA

Path to Wellness is a free community health screening program provided by the National Kidney Foundation of Arizona in collaboration with the Cardio Renal Society of America and other local health organizations.  Screenings are held throughout the state of Arizona on a sponsored basis, and are open to the public.

Path to Wellness screenings provide free blood and urine testing, which is evaluated onsite is using point-of-care testing devices to assess the risk of diabetes, heart and kidney diseases. Those screened are also presented with chronic disease management education, an overall health assessment (weight, blood pressure, etc.) and a one-on-one consultation with a physician. Enrollment opportunities are offered for a follow-up 6-week series of Healthy Living workshops that teach chronic disease self-management skills.

For more information, call our main line at: (602) 840-1644. To volunteer for a Path to Wellness event, please contact James Ivie, Director of Patient Services, at jivie@azkidney.org.

Until next week (when it will still be National Kidney Month),

Keep living your life!

A Two Parter for National Kidney Month

March is National Kidney Month as well as National Women’s Month. Thursday, March 8th was World Kidney Day which was dedicated to women’s kidney health. Mytherapyapp.com asked me if I would guest blog on World Kidney Day. I didn’t hesitate. ANY way to promote awareness of Chronic Kidney Disease is fine with me. The headlines are theirs, but the more I think about them, the more apt I think they are. Thank you, mytherapyapp.com for helping me in my quest to make the world aware of CKD. This is the first part of that guest blog.

The Simple Test That Saved My Life: Gail’s CKD Story

Chronic Kidney Disease is Often Symptomless. When Not Diagnosed, it Can Also Be Deadly

Gail Rae-Garwood

March 8, 2018

This week, chronic kidney disease treatment will cost the US healthcare system almost $1 billion, just as it did last week, and just as it will next week. Treatments such as dialysis and kidney transplants are not only extremely expensive, but a sign that kidney disease has progressed through the stages and become potentially life-threatening. This is usually because it was not detected in the early stages, due to it being a ‘silent disease’ that is often symptomless. Yet, just like another infamously silent disease, hypertension, chronic kidney disease can be diagnosed early with simple tests. When done so, treatment options are usually more simple, cost-effective, and significantly less detrimental to one’s quality of life. Gail Rae-Garwood was fortunate enough to catch chronic kidney disease early. In support of World Kidney Day, Gail has shared her story with us; it highlights how early detection helps save money and, more importantly: lives.

A guest post by Gail Rae-Garwood

My name is Gail Rae-Garwood. I like to think of myself as an average older woman with two adult daughters, a fairly recent husband, and a very protective dog. But I’m not. What makes me a little different is that I have Chronic Kidney Disease… just like the estimated 31 million or 15% of the adult population in the United States. Unlike 96% of those in the early stages of the disease, I know my kidneys are not functioning well.

Chronic Kidney Disease Diagnosis

I was blindsided over a decade ago. That’s when I started seeing a new doctor solely because she was both on my insurance plan and so much closer to home than the one I’d been seeing. It seems everything is at least half an hour away in Arizona; her office wasn’t. As a diligent primary care physician, she ordered a whole battery of tests to verify what she found in my files which, by the way, contained a kidney function reading (called the GFR) of 39%. That was something I’d never been told about.

39%. I’d been a high school teacher for 35 years at that point. If a student had scored 39% on a test, we would have talked and talked until we had gotten to the root of the problem that caused such a low score. No one talked to me about my low kidney function until I changed doctors.

She not only talked, she had me in a nephrologist’s (kidney and hypertension specialist’s) office the next day. That’s when I started worrying. Who gets an appointment with a specialist the very next day? He might have been reassuring, but I’ll never know. I was terrified; he was patriarchal. All I heard was, “I’ll take care of your kidneys. You just do as I say,” or something to that effect.

Nope, wrong doctor for me. I needed to know what was happening, why it was happening, and what I could do about it. I’d already had a terrific Dad and he’d known better than to ask me to give up control of myself.

CKD: What Is It and How Did I Get It?

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

My less-than-stellar experience with being diagnosed and the first nephrologist are what prompted me to write What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. I felt – and still do – that since I taught research writing in college, I should research and then share what I discovered. Why, I wondered, should any new CKD patient be as terrified as I was?

I didn’t feel… well, done with sharing or researching once I finished the book so I began writing a weekly blog: SlowItDownCKD. The blog has won several awards. Basically, that’s because I write in a reader friendly manner. After all, what good is all my researching if no one understands what I’m writing? Non-tech savvy readers asked if I could print the blogs; hence, the birth of the SlowItDownCKD series of books.

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

 

Chronic Kidney Disease Risk Factors

There are many other risk factors for CKD, such as:

• Heart and blood vessel (cardiovascular) disease
• Smoking
• Obesity
• Being African-American, Native American or Asian-American
• Family history of kidney disease
• Abnormal kidney structure
• Older age

Older age? Smoking? Obesity? Hypertension? Which was it for me? I have no idea and, frankly, I no longer care. It’s much more important to me that my CKD be treated so I can see my coming grandchild grow up, revel at another daughter’s wedding later this year, and continue to be my sweet husband’s caretaker as well as his wife.

 

Next week’s blog not only completes this guest blog but contains the most important sentence in it. Cliff hanger? Absolutely! The idea is to get more and more people interested in what CKD is, who may have it, how to detect it, and how to treat it. What better way than a cliff hanger?

Until next week,

Keep living your life!

 

The Nation and the World are Working Together

It’s National Kidney Month and the country is burgeoning with kidney education in one way or another. I’ll be doing my part, too. Tomorrow, I’ll be speaking on eCareDairy. There are two links  to listen in:

https://www.ecarediary.com/EFCRadioShow.aspx and http://www.blogtalkradio.com/ecarediary/2018/03/06/coping-with-chronic-kidney-disease. This is my favorite kind of show – unscripted. If there’s anything you’d like me to include in my talk, leave a comment sometime today.

Of course, some of you are now asking yourselves how National Kidney Month started. Aha! I’ve got that covered. The National Kidney Foundation thought this would be a good way to bring awareness of kidney disease, and how to treat – and even prevent – its complications. Considering the many walks, golf tournaments, dances, free screenings, and other kidney disease education events that are scheduled throughout the year, I’d have to agree with them.

I’ll also be guest blogging on MyTherapyApp at https://www.mytherapyapp.com/blog on World Kidney Day which is Thursday, March 8. (World Kidney Day is always the second Thursday in March.) This is an app to help you remember to take your medications, test your blood glucose, blood pressure, or whatever else you have to test, even to take a walk.

And World Kidney Day? What’s that? This is from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 (Maybe this year will be the one I finally get to split this book into SlowItDownCKD 2013 and SlowItDownCKD 2014). I’ve updated it to reflect the most current information. The updates are bolded:

“I discovered this is a fairly new designation. It was only twelve years ago that it was initiated.

According to http://worldkidneyday.org, “World Kidney Day is a global awareness campaign aimed at raising awareness of the importance of our kidneys.”

Sound familiar?  That’s where I’m heading with What Is It and How Did I Get It? Early Stage Chronic Kidney Disease; SlowItDownCKD 2011; SlowItDownCKD 2012; The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2; SlowItDownCKD 2015; SlowItDownCKD 2016; the daily CKD tidbits on Facebook; and this blog. We may be running along different tracks, but we’re headed in the same direction.

The 58 year old International Society of Nephrology (ISN) – a non-profit group spreading over 155 countries – is one part of the equation for their success.  Another is the International Federation of Kidney Foundations with membership in over 40 countries. Add a steering committee and The World Kidney Day Team and you have the makings of this particular concept….

This year’s theme is Chronic Kidney Disease and Women’s Health.

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

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

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

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

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

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

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

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

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

There is so much free education about CKD online. Maybe you can start with the blogroll on the right side of the blog.

Until next week,

Keep living your life!

My Vocabulary’s Expanding

I learned a new word! It’s gastroparesis. I learned it from the Facebook Chronic Kidney Disease support pages. What does it mean? According to the American Heritage Medical Dictionary, it means:

“A disorder characterized by delayed movement of food from the stomach into the small intestine because of impaired stomach motility, resulting in nausea, vomiting, and a feeling of fullness.”

Wait a minute; I forgot to tell you the winners of the Birthday Book Giveaway Contest:

Pamela Thacker’s copy of SlowItDownCKD 2016 is on the way to her. Donna Steely-Arnold, I will be only too glad to send out your copy of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, as soon as you email your address to me. Catherine Lombard (Forgive me for referring to you as Carole; she was a famous actress back in the ‘30s.), your prize of SlowItDownCKD 2015 is also on its way to you. Congratulations to each of you on being the first three readers to comment about last week’s blog.

Okey-dokey, back to business. Of course you’re eager to know what gastroparesis has to do with Chronic Kidney Disease. Well, I am anyway.

This is from Healthline at https://www.healthline.com/health/type-2-diabetes/gastroparesis#risk-factors:

“Women with diabetes have a high risk for developing gastroparesis. Other conditions can compound your risk of developing the disorder, including previous abdominal surgeries or a history of eating disorders.

Diseases and conditions other than diabetes can cause gastroparesis, such as:

• viral infections
• acid reflux disease
• smooth muscle disorders

Other illnesses can cause gastroparesis symptoms, including:

• Parkinson’s disease
• chronic pancreatitis
• cystic fibrosis
• kidney disease
• Turner’s syndrome”

Right off the bat we can see a connection… diabetes. Remember that diabetes is the leading cause of CKD. Now look toward the bottom of this incomplete list of risk factors…kidney disease. Uh-oh.

I jumped right over to the MayoClinic at https://www.mayoclinic.org/diseases-conditions/gastroparesis/symptoms-causes/syc-20355787 for an explanation:

“Certain medications, such as opioid pain relievers, some antidepressants, and high blood pressure and allergy medications, can lead to slow gastric emptying and cause similar symptoms. For people who already have gastroparesis, these medications may make their condition worse.”

You remembered! Yes, high blood pressure is the second most common cause of CKD. Usually if you have hypertension, you take medication to control it. Sometimes, you take the same medication to help control your CKD even if you don’t have hbp.

According to WebMD at https://www.webmd.com/a-to-z-guides/tc/chronic-kidney-disease-medications, the following medications which are usually prescribed if you have hbp may also be prescribed if you have CKD with or without high blood pressure:

“ACE inhibitors and ARBs. These may be used if you have protein in your urine (proteinuria) or have heart failure. Regular blood tests are required to make sure that these medicines don’t raise potassium levels (hyperkalemia) or make kidney function worse.”

I still wasn’t satisfied that I understood how the CKD and gastroparesis are connected so I delved further. The Cleveland Clinic at https://health.clevelandclinic.org/2015/09/gastroparesis-know-the-risk-factors-for-this-mysterious-stomach-condition/ was a bit helpful:

“If you have diabetes, gastroparesis can cause it to be poorly controlled. Severe gastroparesis makes it difficult to manage your blood sugar.”

The American Diabetes Association at http://www.diabetes.org/living-with-diabetes/complications/gastroparesis.html further explains:

“The vagus nerve controls the movement of food through the digestive tract. If the vagus nerve is damaged or stops working, the muscles of the stomach and intestines do not work normally, and the movement of food is slowed or stopped.

Just as with other types of neuropathy, diabetes can damage the vagus nerve if blood glucose levels remain high over a long period of time. High blood glucose causes chemical changes in nerves and damages the blood vessels that carry oxygen and nutrients to the nerves.”

Maybe we need to understand why we have to manage our blood sugar in the first place.

“Blood sugar, or blood glucose, is sugar that the bloodstream carries to all the cells in the body to supply energy. Blood sugar or blood glucose measurements represent the amount of sugar being transported in the blood during one instant.

The sugar comes from the food we eat. The human body regulates blood glucose levels so that they are neither too high nor too low. The blood’s internal environment must remain stable for the body to function. This balance is known as homeostasis.”

Thank you for that information, MedicalNewsToday at https://www.medicalnewstoday.com/articles/249413.php. Diabetes is a condition in which your blood sugar is too high… and it can be one of many causes of gastroparesis.

Apparently, gastroparesis is of more concern if you are on dialysis. I know, define dialysis. Let’s take a look at the definition MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=2980 offers.

“The process of removing waste products and excess fluid from the body. Dialysis is necessary when the kidneys are not able to adequately filter the blood.”

And how does gastroparesis affect dialysis patients? Dr. William F. Finn, Professor of Medicine, University of North Carolina School of Medicine; Attending Physician, University of North Carolina Hospitals, Chapel Hill explained during an interview. He used terms that we, as laypeople, can readily understand.

“It has been known for many years that as patients develop progressively severe CKD, their condition may be complicated by nutritional deficiency and even overt malnutrition due to the gradual loss of appetite and inadequate caloric and protein intake…. Indeed, there is evidence that the intake of calories, including protein, decreases as renal insufficiency advances…. As a consequence, in patients with advanced CKD and in those treated with chronic hemodialysis or peritoneal dialysis, there is a high prevalence of what is referred to as “protein-energy malnutrition.” This condition may involve up to 40% or more of the patients and is an important issue because there is a strong association between malnutrition and increased risk of morbidity and mortality…. In fact, in patients undergoing dialysis, “undernutrition” is one of the most common risk factors for adverse cardiovascular events and death…. It has been demonstrated repeatedly and consistently that a low serum albumin level and decreased protein intake are strongly associated with increased mortality in patients with CKD….”

You can read the entire interview on Medscape at https://www.medscape.org/viewarticle/545157.

Until next week,

Keep living your life!

Banting

I can just about hear you asking, “What in heaven’s name is banting?” You know I like to read Victorian murder mysteries, right? The one I’m reading now is Murder on the Minneapolis by Anita Davison. In it, she has one character discuss a method of losing weight by strict eating limitations publicized by William Banting. I find it amusing that he was a celebrated undertaker, not that this had anything to do with the dietary restrictions.

According to Wikipedia – which is open to public editing –

“In 1863, Banting wrote a booklet called Letter on Corpulence, Addressed to the Public… which contained the particular plan for the diet he followed. It was written as an open letter in the form of a personal testimonial. Banting accounted all of his unsuccessful fasts, diets, spa and exercise regimens in his past, then described the dietary change which finally had worked for him, following the advice of a physician. His own diet was four meals per day, consisting of meat, greens, fruits, and dry wine. The emphasis was on avoiding sugar, saccharine matter, starch, beer, milk and butter. Banting’s pamphlet was popular for years to come, and would be used as a model for modern diets…. Initially, he published the booklet at his personal expense. The self-published edition was so popular that he determined to sell it to the general public. The third and later editions were published by Harrison, London. Banting’s booklet remains in print as of 2007, and is still available on-line. …He undertook his dietary changes at the suggestion of Soho Square physician Dr. William Harvey, who in turn had learnt of this type of diet, but in the context of diabetes management, from attending lectures in Paris by Claude Bernard.”

It’s starting to sound familiar, isn’t it? As Chronic Kidney Disease patients, and certainly if you’re also diabetic, we’re often told by our doctors to lose weight.

Have you heard of the Keto Diet? As a matter of fact, the app for that was included in last week’s blog. That’s one way to lose weight, but it’s too protein and fat heavy for CKD patients. Another way is to count carbohydrates or Bant.

I find it fascinating how the things I’m interested in seem to dovetail sometimes. For example, Chronic Kidney Disease, losing weight, Victorian murder mysteries, and banting.

I know. We need to back track a bit. Let’s start with carbohydrates. What are they anyway? According to the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/carbohydrate , they are:

“any of various neutral compounds of carbon, hydrogen, and oxygen (such as sugars, starches, and celluloses) most of which are formed by green plants and which constitute a major class of animal foods”

Here’s a list of carbohydrates from The American Diabetes Association at http://www.diabetes.org/food-and-fitness/food/what-can-i-eat/understanding-carbohydrates/carbohydrate-counting.html:

• grains like rice, oatmeal, and barley
• grain-based foods like bread, cereal, pasta, and crackers
• starchy vegetables like potatoes, peas and corn
• fruit and juice
• milk and yogurt
• dried beans like pinto beans and soy products like veggie burgers
• sweets and snack foods like sodas, juice drinks, cake, cookies, candy, and chips

Now that we have a definition and examples of carbohydrates, why limit them? The MayoClinic at https://www.mayoclinic.org/healthy-lifestyle/weight-loss/in-depth/low-carb-diet/art-20045831 has that one covered.

“Your body uses carbohydrates as its main fuel source. Complex carbohydrates (starches) are broken down into simple sugars during digestion. They’re then absorbed into your bloodstream, where they’re known as blood sugar (glucose). In general, natural complex carbohydrates are digested more slowly and they have less effect on blood sugar. Natural complex carbohydrates provide bulk and serve other body functions beyond fuel.

Rising levels of blood sugar trigger the body to release insulin. Insulin helps glucose enter your body’s cells. Some glucose is used by your body for energy, fueling all of your activities, whether it’s going for a jog or simply breathing. Extra glucose is usually stored in your liver, muscles and other cells for later use or is converted to fat.

The idea behind the low-carb diet is that decreasing carbs lowers insulin levels, which causes the body to burn stored fat for energy and ultimately leads to weight loss.”

Wait a minute. What are these “complex carbohydrates” they mention? This is what I found on MedlinePlus at https://medlineplus.gov/ency/imagepages/19529.htm:

“Complex carbohydrate foods provide vitamins, minerals, and fiber that are important to the health of an individual. The majority of carbohydrates should come from complex carbohydrates (starches) and naturally occurring sugars, rather than processed or refined sugars, which do not have the vitamins, minerals, and fiber found in complex and natural carbohydrates. Refined sugars are often called ‘empty calories’ because they have little to no nutritional value.”

Got it. Complex carbohydrates provide what our bodies need, but too much of them can raise our blood glucose levels or turn to fat.

If there are complex carbohydrates, does that mean there are simple ones, too? Healthline (Thank you again for including this blog among the six best kidney blogs of 2016 & 2017, Healthline.) at https://www.healthline.com/health/food-nutrition/simple-carbohydrates-complex-carbohydrates#2 was succinct in describing these:

“Carbohydrates are made up of three components: fiber, starch, and sugar. Fiber and starch are complex carbs, while sugar is a simple carb. Depending on how much of each of these is found in a food determines its nutrient quality.”

Just in case you’re not sure which foods to avoid, Everyday Health at https://www.everydayhealth.com/diet-nutrition/diet/good-carbs-bad-carbs/ has a beginner’s list for us:

• Soda
• Candy
• Cookies
• Pastries and desserts
• Sweetened beverages, such as lemonade or iced tea
• Energy drinks
• Ice cream

Before you ask, fruits and low fat or nonfat milk do contain simple carbohydrates, but these are healthy for you. You still have to include the milk in your phosphorous count on the renal diet.

This is amazing! Some blogs just flow while I get to the point of just about tearing my hair out to write others (Hey, stress is not good for CKD.) This one flowed.

Congratulations to Christine Barnard from South Africa. She was the first person to let me know she’d read last week’s blog. Instead of winning just one book, she won four: SlowItDownCKD 2012; The Book of Blog: Moderate Stage Chronic Kidney Disease, Part 2; SlowItDownCKD 2015; and SlowItDownCKD 2016. Why? Because she mentioned that there are few sources of Chronic Kidney Disease information in South Africa. Christine, please be sure to email me your physical address. Use SlowItDownCKD@gmail.com.

Until next week,
Keep living your life!

Apps Again

Last week I mentioned kidney diet apps and that I suspected the ones I wrote about in SlowItDownCKD 2016 may be outdated or not exist anymore. Let’s jump right in before I need to get up from the computer to walk around for a while. I’ve been working on another book and been sitting here a long time. We all know that’s not good for us.

This is from SlowItDownCKD 2016:

“According to GCFLearnFree.org – a program of Goodwill Community Foundation® and Goodwill Industries of Eastern NC Inc.® (GIENC®) – at http://www.gcflearnfree.org/computerbasics/understanding-applications/1/,

‘Simply put, an app is a type of software that allows you to perform specific tasks. Applications for desktop or laptop computers are sometimes called desktop applications, while those for mobile devices are called mobile apps.’

During an internet search, I found that NephCure which provides ‘detailed information about the diseases that cause Nephrotic Syndrome (NS) and Focal Segmental Glomerulosclerosis (FSGS)’ (and was one of the first organizations to interview me about CKD, by the way) – at http://nephcure.org/livingwithkidneydisease/managing-your-care/kidney-health-tracking-tools/helpful-mobile-apps/ was way ahead of me in discussing apps. This is what’s on their website:

Diet and Nutrition Apps

• KidneyAPPetite – Gives daily summaries of key nutrients for kidney health, check the nutritional value of foods before you eat it, and provides printable summaries to refer to. Great for patients on a renal diet! Cost: Free, Device: iOS

• Pocket Dietitian – Created by a Nephrologist, allows you to choose your health conditions and dietary restrictions to see recommended foods as well as keep track of what you have eaten. You can even see your past nutrition in graph form. Cost: Free, Device: iOS and Android

• My Food Coach – is designed to help you understand and manage all of your nutritional requirements. This app offers personalized nutrition information, recipes and meal plans. Cost: Free, Device: iOS and Android

• HealthyOut – Enables you to search and order nearby healthy food and browse for healthy options while out to eat. You can even choose a specific diet such as gluten free! Cost: Free, Device: iOS and Android

• Restaurant Nutrition – Allows you to search restaurants and look at nutritional values, locate nearby restaurants, and keep a food journal. The Restaurant Nutrition application shows nutritional information of restaurant foods. Cost: Free, Device: iOS and Android

While I could easily go to most of the apps’ websites by clicking on the name while I held down the control button, this was not the case with Pocket Dietician. I was able to find it and lots of descriptive information about it in the Google Play store, but kept getting the message that I had no devices. The help function on the site was not helpful.

What about My Food Coach? It has an extra feature that my favorite lacked: a warning when a recipe would bring you over your renal diet limits. It’s recipe oriented, which doesn’t endear it to me since I like to experiment cooking my big five ounces of protein daily with my three different size servings of different fruits that are on my renal diet. I also avoid red meat.

HealthyOut, while not specifically for CKD, does have a function for the Mediterranean diet which is more often than not recommended for us. I thought this was a hoot since it never occurred to me that you can check restaurant foods by the restaurant name. I am adding this app to my iPhone.”

It looks like I was wrong. Most of these are still available. Unfortunately KidneyDiet, my all-time favorite, is no more. Neither is Restaurant Nutrition. But let’s see what other apps are available for us.

If sodium (salt) is a problem for you, there’s an app for that. According to For Your Kidney at http://foryourkidney.com/en/2016/01/04/5-best-apps-kidney-health/:

“Sodium One is a user friendly Sodium Counter app. Patients with High Blood Pressure or Chronic Kidney Disease can benefit from this app a lot. The App allows you to track water intake as well as exercise and weight history. The main focus of Sodium One however, is to manage your daily sodium allowance. The tracking is actually very accurate when it comes to calorie counts. A great extra is that this app does not require an internet connection.”
This is $0.99 and only available in IOS. That’s Apple.

I do want to mention there are apps specifically for those on dialysis. I have not included them in this blog, although NephCure did include KidneyAPPetite. An internet search for ‘dialysis apps,’ or something along that line, will help you find them.

I’ve tried a few other apps that were not dedicated to those with CKD and found moderate success with them. One is Keto, which bills itself as “Stupid Simple”… and it is. However, it’s limited to carbs, fat, and protein. You’re on your own for phosphorous, potassium, and sodium. Oh, KidneyDiet, come back! The nice part of Keto is that you can scan barcodes (Is that really one word these days?) and add your own foods and meals IF you upgrade from the basic free version. Their website at https://play.google.com/store/apps/details?id=com.venninteractive.ssketo  tells you this is only available for Android, but I have it on my IOS device.

Under Armour’s MyFitnessPal at https://freepps.top/apps/health-fitness/calorie-counter-myfitnesspal has been around for a while. Again, while this is not perfect for those with CKD, it is a great help. I like that you can set goals and request reminders about your goal, as well as add foods. Of course, Premium offers you a lot more… and charges you accordingly. Articles about exercise and weight pop up, too. And then there are recipes. Again, it doesn’t do the whole trick, although it does count potassium, protein, sodium and calories . What’s missing is phosphorous. The bonuses are carb, fat (by type, no less) cholesterol, fiber, sugar, vitamins A & C, calcium, and iron counters. This is also a free Apple app.

Lose It! at https://www.loseit.com/ is not as comprehensive for the CKD patient. It allows you to track fat, carbs, protein, and calories. Here, again, you can set your goals. You can even take pictures of your food to track it. However, I find I want something more CKD oriented with potassium, phosphorous, and sodium counters included. This looks like it may be a good app for weight loss, but I’m wondering how much help it is for the CKD patient.. This is a free Android app.

At this point, I stopped checking out apps. There are so many more in just a little over the year I last looked at apps. But they’re not quite for the likes of us. It looks like MyFitnessPal is the closest we can come to a kidney app, unless you’re on dialysis. Then I’d go for KidneyAPPetite.

Before I go, here’s a shameless plug for my new book. It’s Sort of Dark Places, available on Amazon and is not CKD related at all. I’ve fictionalized the stories people have told me about their most difficult times. I found it cathartic to write even though these are not my stories. Advance readers have told me they did, too. Give it a try.

In honor of the great Dr. Martin Luther King’s birthday, the first person who hasn’t already won a free book that lets me know they’ve read today’s blog wins a copy of SlowItDownCKD 2012.

Until next week,
Keep living your life!

And the Beat Goes On

Happy New Year! After a night of thinking about my life and where it’s gone in the last almost 71 years, I remembered some events from a long, long time ago. For example, when I was a young woman in my late teens, I used to go to the clubs in New York City and dance the night away. I had a drink or two – never more – but I was there to dance… and that’s I did. I danced until I felt my whole body pulsing. Pulsing. That’s the word we used, but it has a very different meaning for me today over 50 years later.

High blood pressure can damage your kidneys. Maybe, like me, you’ve been ordered to take your blood pressure daily even if you are taking medication for hypertension. But what is this pulse/min reading I see at the bottom of the blood pressure monitor face?

Back to the beginning. According to the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/pulse, this is the way we used the word in relation to our dancing:

“rhythmical beating, vibrating, or sounding”

The same dictionary tells us that this is the way my blood pressure monitor uses the word:

“a: the regular expansion of an artery caused by the ejection of blood into the arterial system by the contractions of the heart

b: the palpable beat resulting from such pulse as detected in a superficial artery; also: the number of individual beats in a specified time period (such as one minute)

I knew that. I’ll bet that you did, too; but I keep forgetting why that’s important.

Verywell, a conglomeration of information from doctors, dieticians, and personal trainers, at https://www.verywell.com/pulse-pressure-1763964 answers that question for us:

“Sometimes pulse pressure does provide important information. There’s research showing that pulse pressure can be valuable when looking at a patient’s overall risk profile. Several studies have identified that high pulse pressure:

• Causes more artery damage compared to high blood pressure with normal pulse pressure

• Indicates elevated stress on a part of the heart called the left ventricle

• Is affected differently by different high blood pressure medicines

So if you’re diagnosed with high blood pressure, your doctor may consider it when designing your overall treatment plan.”

Now I understand why my physician’s nurse gets that look on her face after taking my pulse sometimes. Since I have no heart problems, although Chronic Kidney Disease can easily lead to them, my hypertension medication may have to be adjusted or the ones I’m taking replaced with others that won’t raise my pulse level.

But what about the possibility of “elevated stress on a part of the heart called the left ventricle?” And why only the left ventricle? Wait a minute; what is a ventricle anyway?

I have definitely forgotten more than I ever knew to begin with! Enough grousing.

Let’s see how precise a definition of ventricle we can get. The Oxford Dictionary at https://en.oxforddictionaries.com/definition/ventricle offers the following definitions:

“A hollow part or cavity in an organ…..

Each of the two main chambers of the heart, left and right….

Each of the four connected fluid-filled cavities in the centre of the brain.”

It’s pretty obvious we need the second definition.

But why is the left ventricle the only one that may experience “elevated stress”? Healthline (The same organization that included SlowItDownCKD in the top six nephrology blogs of 2016 & 2017.) at https://www.healthline.com/human-body-maps/left-ventricle explains:

“The left ventricle is the thickest of the heart’s chambers and is responsible for pumping oxygenated blood to tissues all over the body….. Various conditions may affect the left ventricle and interfere with its proper functioning. The most common is left ventricular hypertrophy, which causes enlargement and hardening of the muscle tissue that makes up the wall of the left ventricle, usually as a result of uncontrolled high blood pressure.”

So here I am, taking three blood pressure medications, and it’s possible to still have uncontrolled high blood pressure?

Apparently so, the American Heart Association at https://www.heart.org/HEARTORG/Conditions/HighBloodPressure/MakeChangesThatMatter/Managing-High-Blood-Pressure-Medications_UCM_303246_Article.jsp has some interesting information about this.

“Because different drugs do different things in the body, you may need more than one medication to properly manage your blood pressure…. Different people can respond very differently to medications. Everyone has to go through a trial period to find out which medications work best with the fewest side effects. Give yourself a chance to adjust to a drug. It may take several weeks, but the results will usually be worth it. If you don’t feel well after taking a medication, let your doctor know so he/she can adjust your treatment.”

Considering that Chronic Kidney Disease causes high blood pressure as well as high blood pressure causing CKD, I intend to keep doing just that.

We’re not finished with the pulse just yet. I wanted to know the basic connection between blood pressure and pulse and I wanted a simple explanation of it.

But first we’ll need a definition of artery. No problem, that’s what the glossary in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease is for.

“Arteries: Vessels that carry blood from the heart.”

Let’s get to the heart (That’s funny. Get it? Heart) of the matter now.

HealthCentral at https://www.healthcentral.com/article/pulse-rate-and-high-blood-pressure-defining-the-connection had exactly what I asked for.

“Because high blood pressure causes tension and complicates cardiovascular normal activity, it may cause stress with your pulse activity. Meaning, the arteries experience resistance against the flow of the blood. The pulse rate calculates the number of times the heart beats per minute. The rate measurements indicate the heart rate, heart rhythm and the strength of your pulse. Therefore, high blood pressure slows down normal blood flow causing the arteries to demonstrate difficulty with expanding.”

Got it! Now, if I can only remember it….

Here’s hoping this New Year is your best year yet – as I say to my grown children every year. Wishing you health first of all, then love from your friends and family, and finally kindness to share with others.

Thank you for being my readers and thank you for helping to make this an award winning blog not once or twice, but three times.

Until next week,
Keep living your life!

Snap, Crackle, and Pop

I haven’t taken to eating boxed cereals, although I do thank Rice Krispies for coming up with that slogan. I’ve discovered there are drawbacks to being independent that I hadn’t thought about… like the one that landed me in my new chiropractor’s office where I heard those sounds coming from within my body.

It started off so innocently. Our outdoor swing bit the dust so Bear took it apart. I decided our hammock chairs would look great where the swing had been. Ah, but Bear was busy moving the parts of the swing from that part of the patio.

I could do it if I went slowly. So I pulled one of them partway down the walkway, then pulled the second one. Of course, pulling meant going backwards. Why I was looking forward instead of backward, I’ll never know. I managed to trip over the foot of the first hammock frame.

My arm was scraped from one end to the other. My thigh had the biggest black and blue mark I’d seen on my body to date. But worse of all, my neck hurt. No problem, I figured. I’ll just wash out the scrapes, ice the neck and the thigh and I’ll be fine. But I wasn’t. Hence, the chiropractic visits.

It’s been two weeks. The arm is almost healed, the black and blue mark moving toward disappearing and the neck barely hurts at all. Hmmm, if chiropractic is so good for these aches and pains, could it also be good for my kidneys?
The Medical Dictionary of The Free Dictionary at http://medical-dictionary.thefreedictionary.com/chiropractic defines chiropractic for us:

Chiropractic is from Greek words meaning done by hand. It is grounded in the principle that the body can heal itself when the skeletal system is correctly aligned and the nervous system is functioning properly. To achieve this, the practitioner uses his or her hands or an adjusting tool to perform specific manipulations of the vertebrae. When these bones of the spine are not correctly articulated, resulting in a condition known as subluxation, the theory is that nerve transmission is disrupted and causes pain in the back, as well as other areas of the body.

Chiropractic is one of the most popular alternative therapies currently available. Some would say it now qualifies as mainstream treatment as opposed to complementary medicine. Chiropractic treatment is covered by many insurance plans and in 2004, the U.S. Department of Veterans Affairs announced full inclusion of chiropractic care for veterans. It has become well-accepted treatment for acute pain and problems of the spine, including lower back pain and whiplash.…

I didn’t see anything in my research to connect this type of medicine and the kidneys, so I tried thinking about it another way. What are the major causes of Chronic Kidney Disease? We know diabetes is the first and hypertension the second.

I took a look at NaturalNews.com (https://www.naturalnews.com/035546_chiropractic_blood_sugar_diabetes.html) and found the following:

The average person may not recognize how diabetes and chiropractic are connected. What does the back have to do with blood sugar? Often, an electrician understands this faster than most people. Interfere with the current flowing through the wires and the appliances or areas of the house lose normal function or might even catch fire.

If the nerve supply from the upper neck or middle back (the two areas that supply the pancreas) are disturbed, pancreatic function suffers; maybe in its ability to produce enzymes to digest proteins, fats and carbohydrates, or maybe insulin production, or both. Blood sugar and digestion become unbalanced, resulting in either in diabetes or hypoglycemia.

Nutritionist Carolyn Heintz further explains:

Chiropractic care might be helpful to diabetics if problems in the spine affect blood flow to the pancreas. The pancreas releases insulin in the body which is necessary to regulate proper levels of glucose in the blood. If the pancreas is not receiving enough oxygen and nutrients through proper blood circulation, perhaps this might have an effect on insulin production.

Another way chiropractic treatment might help those who suffer from diabetes is by alleviating pressed nerves on the spine to allow for a regenerated connection between the brain and the systems that are involved in the endocrine system and a body’s metabolism. Also, when the nervous system is free to work properly, the body can work to heal itself better.

You can read the rest of her article at http://belviderechiropractic.com/conditions/can-chiropractic-care-help-treat-diabetes/.

This makes sense. If there’s a ‘short’ in the system, it’s just not going to work. If you correct the short allowing the current to flow, you could be shortcutting diabetes… and maybe Chronic Kidney Disease.

Well, how about hypertension? How can chiropractic help with that?

This caught my eye, but it will need some explaining. I discovered it at https://www.echiropractor.org/chiropractic-blood-pressure/.

Upper cervical chiropractic treatment, “performed by a mechanical chiropractic adjusting device” was noted to decrease both systolic and diastolic blood pressures, and these findings were published in 1988…. More recently, it was found that the Atlas Adjustment lowered blood pressure with the effectiveness of “two blood pressure medications given in combination”, according to Dr. George Bakris. The drop in blood pressure as a result of the realignment of the Atlas vertebra was “an average of 14 mm Hg greater drop” (systolic) and “an average 8 mm Hg greater drop” (diastolic), compared to “sham-treated patients”.

Cervical means “relating or belonging to the neck, or to any body part that resembles a neck,” according to Encarta Dictionary. In the paragraph above, it means the neck. Here’s a picture of a mechanical chiropractic adjusting device. It’s used if more than finger or hand pressure is needed for spinal adjustment and sounds almost like a stapler. It doesn’t break the skin, simply manipulates the spine.

The Atlas Adjustment is a little harder to explain. The topmost vertebra of your neck is called the Atlas because it holds up the globe better known as your head. Remember your Greek mythology? Atlas supported the world. It’s this vertebra that is being manipulated.

I, for one, am convinced. I was wondering whether or not to continue the visits since I’m feeling better. It sounds like something I should do. How about you?

Until next week,
Keep living your life!

There’s Always the Exception

And this is one of them. We all know I don’t write about dialysis, but I’ve been receiving bunches of emails lately asking if I would consider including this product, that book, or the other social media kidney disease awareness item. My response is usually thank you, but I don’t allow advertising or product promotion on the blog. When Dr. Bruce Greenfield, a Los Angeles nephrologist with 37 years experience, sent me a link to his dialysis rap with the following message, I was forced to think twice: “My goal is to reach every dialysis patient in America, in part to make people more informed, in part to shed a little light into their world in a fun way, and of course- to make them smile!”

But why? Are smiles and laughter necessary in the treatment of illness? According to Dr. Jordan Knox, a resident in family medicine, they are. This is how he summarized the need for physicians to use humor in his essay on KevinMD.com at http://www.kevinmd.com/blog/2017/10/theres-place-humor-medicine.html last Friday: “Patch Adams, MD is one of the best-known physicians to use humor in healing. He focuses more on silliness to reach pure joy, nourishing the soul as much as the body. There is something about the contrast, when silliness uproots the expectation of seriousness, that is more powerful than pure humor alone. I think that’s why humor can be so powerful in the doctor’s office; because the expectation is all business, seriousness, and authority. Humor can break down those rigid roles of “patient” and “doctor,” or “team leader” and “team member.” It can level the playing field and align people on the same side, working toward a shared goal.”

Being a Groucho Marx fan, I keep thinking of his one liner, “A clown is like an aspirin, only he works twice as fast.” Hey, CKD patients can’t take aspirin (if they’re NSAIDS or nonsteroidal anti-inflammatory drugs), so why not take humor instead?

But what happens to us physically when we laugh? I checked in with my old standby, The Mayo Clinic, at https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/stress-relief/art-20044456?pg=1 and found the following information about laughter and your body.

Short-term benefits

Laughter can:

Stimulate many organs. Laughter enhances your intake of oxygen-rich air, stimulates your heart, lungs and muscles, and increases the endorphins that are released by your brain.

Activate and relieve your stress response. A rollicking laugh fires up and then cools down your stress response, and it can increase your heart rate and blood pressure. The result? A good, relaxed feeling.

Soothe tension. Laughter can also stimulate circulation and aid muscle relaxation, both of which can help reduce some of the physical symptoms of stress.

Keep in mind that I am not a dialysis patient but hope that this rap is helpful to those who are. Sit back, turn up the speakers, and have some short term benefits courtesy of Dr. Greenfield.

I laughed… and I learned, but I was really interested in the effects of laughter that could help Chronic Kidney Disease patients in the early and moderate stages. WebMD at https://www.webmd.com/balance/features/give-your-body-boost-with-laughter#2 had a bit more information about that. Mind you, these results are observational or the results of very small studies.

Blood flow. Researchers at the University of Maryland studied the effects on blood vessels when people were shown either comedies or dramas. After the screening, the blood vessels of the group who watched the comedy behaved normally — expanding and contracting easily. But the blood vessels in people who watched the drama tended to tense up, restricting blood flow.

Immune response. Increased stress is associated with decreased immune system response, says Provine. (He’s a professor of psychology and neuroscience at the University of Maryland, Baltimore County and author of Laughter: A Scientific Investigation.) Some studies have shown that the ability to use humor may raise the level of infection-fighting antibodies in the body and boost the levels of immune cells, as well.

Blood sugar levels. One study of 19 people with diabetes looked at the effects of laughter on blood sugar levels. After eating, the group attended a tedious lecture. On the next day, the group ate the same meal and then watched a comedy. After the comedy, the group had lower blood sugar levels than they did after the lecture.

Reminder: Diabetes is the number one cause of CKD. CKD means a compromised immune system. Healthy blood flow is necessary for healthy kidneys.

Tomorrow is Halloween (Happy birthday to my brother Paul!), so I wanted to try my hand at some macabre humor.

 

Obituary –

The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 died peacefully on October 20th, 2017, on Amazon.com and B & N.com at the age of three. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 is survived by SlowItDownCKD 2011 & SlowItDownCKD 2012, which were both born of a need for larger print, more comprehensive indexes, and a less wieldy book to hold. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 was preceded by What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 gave birth to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, SlowItDownCKD 2015 and SlowItDownCKD 2016. Flowers and condolences in the form of Chronic Kidney Disease Awareness may be sent to any and all vehicles for spreading awareness of this disease.

Researching laughter and CKD led to only laughter and dialysis sites. I wasn’t satisfied with that and kept looking only to find this generalized, but easily understood, image from The Huffington Post Partners at .

I don’t think we can forget that anything that’s good for your heart will benefit the kidneys. Since CKD is an inflammatory disease, reducing inflammation of any kind in the body can only be a good thing. Look at that! Both bad cholesterol and systolic blood will be lowered. These are all kidney related. Hypertension is the second most common cause of CKD. Cholesterol makes the heart work harder, which can raise your blood pressure. Uh-oh.

Another thing I realized is that if I find something wrong, you know like the termite invasion or the a/c breaking in 100 degree weather, my first response is laughter. I never knew why. Hmmm, maybe I’ve been protecting my body all along.

Until next week,

Keep living your life!

Helping Where You Can

When my brothers made it public that they each had Parkinson’s’ Disease several years ago, I decided to see how I could help. They were being well taken care of by their wives and their medical teams, so they didn’t need my help. Maybe I could help others, I reasoned. So I began exploring ways I might be able to do that… and found one.

It was clear clinical trials with people of my heritage were being conducted and needed participants. It wasn’t clear what these studies entailed. They weren’t reader friendly enough for me to understand, but after multiple emails and phone calls asking for clarification, I finally understood. During the whole process, I kept thinking to myself that this was a wonderful way to help if only it were more accessible – meaning more easily understood.

A couple of weeks ago, Antidote Match approached me about carrying their widget on my blog roll. If you look at the bottom of the lists on the right side of the blog, you’ll see it in turquoise. Actually, I chose turquoise because you just can’t miss that color.

According to the National Institutes of Health (part of the U.S. Department of Health and Human Services) at https://www.nhlbi.nih.gov/studies/clinicaltrials/ :

Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. These studies also may show which medical approaches work best for certain illnesses or groups of people. Clinical trials produce the best data available for health care decision making.

The purpose of clinical trials is research, so the studies follow strict scientific standards. These standards protect patients and help produce reliable study results.

Clinical trials are one of the final stages of a long and careful research process. The process often begins in a laboratory (lab), where scientists first develop and test new ideas.

If an approach seems promising, the next step may involve animal testing. This shows how the approach affects a living body and whether it’s harmful. However, an approach that works well in the lab or animals doesn’t always work well in people. Thus, research in humans is needed.

For safety purposes, clinical trials start with small groups of patients to find out whether a new approach causes any harm. In later phases of clinical trials, researchers learn more about the new approach’s risks and benefits.

A clinical trial may find that a new strategy, treatment, or device
• improves patient outcomes;
• offers no benefit; or
• causes unexpected harm

All of these results are important because they advance medical knowledge and help improve patient care.

Important, right? But why Antidote Match, you ask? That’s easy: because it’s easy. The information offered is in lay language, the common language you and I understand, rather than in medicalese. Maybe I should just let them present their own case.

Antidote Match™

Matching patients to trials in a completely new way
Antidote Match is the world’s smartest clinical trial matching tool, allowing patients to match to trials just by answering a few questions about their health.

Putting technology to work
We have taken on the massive job of structuring all publicly available clinical trial eligibility criteria so that it is machine-readable and searchable.

This means that for the first time, through a machine-learning algorithm that dynamically selects questions, patients can answer just a few questions to search through thousands of trials within a given therapeutic area in seconds and find one that’s right for them.

Patients receive trial information that is specific to their condition with clear contact information to get in touch with researchers.

Reaching patients where they are
Even the smartest search tool is only as good as the number of people who use it, so we’ve made our search tool available free of charge to patient communities, advocacy groups, and health portals. We’re proud to power clinical trial search on more than a hundred of these sites, reaching millions of patients per month where they are already looking for health information.

Translating scientific jargon
Our platform pulls information on all the trials listed on clinicaltrials.gov and presents it into a simple, patient-friendly design.

You (Gail here: this point is addressed to the ones conducting the clinical trial) then have the option to augment that content through our free tool, Antidote Bridge™, to include the details that are most important to patients – things like number of overnights, compensation, and procedures used. This additional information helps close the information gap between patients and researchers, which ultimately yields greater engagement with patients.

Here’s how Antidote Match works
1. Visit search engine → Patients visit either our website or one of the sites that host our search.
2. Enter condition → They enter the condition in which they’re interested, and begin answering the questions as they appear
3. Answer questions → As more questions are answered, the number of clinical trial matches reduces
4. Get in touch: When they’re ready, patients review their matches and can get in touch with the researchers running each study directly through our tool

A bit about Antidote
Antidote is a digital health company on a mission to accelerate the breakthroughs of new treatments by bridging the gap between medical research and the people who need them. We have commercial agreements with the majority of the top 25 pharmaceutical companies and CROs, and a partner network that is growing every day.

Antidote was launched as TrialReach in 2010 and rebranded to Antidote in 2016. We’re based in New York, NY and London, U.K. For more information, visit www.antidote.me or contact us at hello@antidote.me.

Try it from the blog roll. I did. I was going to include my results, but realized they wouldn’t be helpful since my address, age, sex, diseases, and conditions may be different from everyone else’s. One caveat: search for Chronic Renal Insufficiency or Chronic Renal Failure (whichever applies to you) rather than Chronic Kidney Disease.

On another note entirely: my local independently owned book store – Dog Eared Pages – in Phoenix has started carrying the SlowItDownCKD series. Currently, they have 2016 in stage. I had a wonderful time reading from my novel Portal in Time there last Thursday night and was more than pleasantly surprised at the number of CKD awareness contacts I made.
Until next week,
Keep living your life!

I’ll Sleep When I’m Dead

How many times have you said this (before your diagnose) to those who told you to slow down, take it easier, don’t rush so, take some time for yourself, etc.? As a younger person, I was a high school teacher, an actor, a writer, and – most importantly – a mother, actually a single mother once my daughters were double digit aged.

Guess what. You may sleep when you’re dead, but you need to sleep now before you hasten the time to your death. What’s that? You get enough sleep? I thought I did, too, but I wasn’t getting the kind of sleep I needed.

Why do we need sleep anyway? I turned to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 for some answers. The first reason I stumbled across was in an article from The Journal of The American Society of Nephrologists:

“Hermida tells WebMD that some of the body’s blood pressure control systems are most active while we sleep. So medicines designed to control those systems work better when taken close to the time when the systems are activated most fully.”

Ramon C. Hermida, PhD is the director of the bioengineering and chronobiology labs at the University of Vigo in Spain.

Hmmm, I take medication for hypertension… and I take it at night. I see that I need to sleep for it to work most effectively. I’ve known this for years and written about it. The point is you may need to know about it.

Then I started wondering if I were correct in the amount of sleep I thought I needed. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 was helpful here:

“How much sleep is enough sleep anyway? According to Dr. Timothy Morgenthaler of The Mayo Clinic site, seven to eight hours is what an adult needs, but then he lists mitigating circumstances under which you might need more:

• Pregnancy. Changes in a woman’s body during early pregnancy can increase the need for sleep.
• Aging. Older adults need about the same amount of sleep as younger adults. As you get older, however, your sleeping patterns might change. Older adults tend to sleep more lightly and for shorter time spans than do younger adults. This might create a need for spending more time in bed to get enough sleep, or a tendency toward daytime napping.
• Previous sleep deprivation. If you’re sleep deprived, the amount of sleep you need increases.
• Sleep quality. If your sleep is frequently interrupted or cut short, you’re not getting quality sleep. The quality of your sleep is just as important as the quantity.”

While I’m not pregnant (and will become a medical miracle if I become pregnant), all the other circumstances do apply to me. During Shiva after my brother’s death, there was very, very little sleeping going on. Hence, sleep deprivation. I’m aging and my sleep quality is not great right now. Those are my circumstances, but they could be yours. Are you getting enough sleep?

Sometimes, simply having Chronic Kidney Disease can be the source of sleep problems. This is something I’ve written about several times. Here’s an excerpt from SlowItDownCKD 2015 about just that:

“We’ve known for a long time that sleep disorders are more common in kidney disease patients than in the general population,” Charles Atwood, MD, associate director of the University of Pittsburgh Medical Center’s Sleep Medicine Center in Pennsylvania, who wasn’t involved in the study, told Medscape Medical News. “A lot of studies in the past focused on the dialysis population. It seems like this group focused on people with milder degrees of kidney disease and basically found that they also have sleep disorders and I’m not surprised by that,” he added.

You can read the entire article at http://www.medscape.com/viewarticle/805342, although you will have to register for a free account.

By digging deep, far and wide, I finally figured out that toxic waste buildup in our systems (from the imperfect blood filtering by our kidneys) could be the cause of my segmented sleep. I took a comment from one study, a sentence from another, and unilaterally decided this was the reason. I am not a doctor – as I keep saying – and I don’t have the facts I’d like to behind this conclusion….”

Oh, right: you need a definition of segmented sleep. Wikipedia provides one:

“Segmented sleep, also known as divided sleep, bimodal sleep pattern, bifurcated sleep, or interrupted sleep, is a polyphasic or biphasic sleep pattern where two or more periods of sleep are punctuated by periods of wakefulness.”

The National Institutes of Health at https://www.nhlbi.nih.gov/health/health-topics/topics/sdd/why sums up our need for sleep beautifully:

“Sleep plays an important role in your physical health. For example, sleep is involved in healing and repair of your heart and blood vessels. Ongoing sleep deficiency is linked to an increased risk of heart disease, kidney disease, high blood pressure, diabetes, and stroke.

Sleep deficiency also increases the risk of obesity. For example, one study of teenagers showed that with each hour of sleep lost, the odds of becoming obese went up. Sleep deficiency increases the risk of obesity in other age groups as well.

Sleep helps maintain a healthy balance of the hormones that make you feel hungry (ghrelin) or full (leptin). When you don’t get enough sleep, your level of ghrelin goes up and your level of leptin goes down. This makes you feel hungrier than when you’re well-rested.

Sleep also affects how your body reacts to insulin, the hormone that controls your blood glucose (sugar) level. Sleep deficiency results in a higher than normal blood sugar level, which may increase your risk for diabetes.

Sleep also supports healthy growth and development. Deep sleep triggers the body to release the hormone that promotes normal growth in children and teens. This hormone also boosts muscle mass and helps repair cells and tissues in children, teens, and adults. Sleep also plays a role in puberty and fertility.

Your immune system relies on sleep to stay healthy. This system defends your body against foreign or harmful substances. Ongoing sleep deficiency can change the way in which your immune system responds. For example, if you’re sleep deficient, you may have trouble fighting common infections.”

I think I need to go to sleep now.

Until next week,
Keep living your life!

Long Term, Short, and your Heart

I received some comments about Acute Kidney Disease (AKI) in the midst of all the support after last week’s blog. It seems this is a new topic for so many of us. By us I mean Chronic Kidney Disease (CKD) patients. I know at stage 3, my nephrologist never brought this up to me.

Ah, but I remembered this from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

On the very first page of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I wrote “…chronic is not acute. It means long term, whereas acute usually means quick onset and short duration.”

All those years of teaching English in high school and college paid off for me right there in that sentence.

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

“Chronic Kidney Disease is a risk factor for acute kidney injury, acute kidney injury is a risk factor for the development of Chronic Kidney Disease, and both acute kidney injury and Chronic Kidney Disease are risk factors for cardiovascular disease.” …

Not surprisingly, the risk factors for AKI {Once again, that’s acute kidney injury.} are the same as those for CKD… except for one peculiar circumstance. Having CKD itself can raise the risk of AKI 10 times. Whoa! If you’re Black, of an advanced age {Hey!}, or have diabetes, you already know you’re at risk for CKD, or are the one out of nine in our country that has it. Once you’ve developed CKD, you’ve just raised the risk for AKI 10 times. I’m getting a little nervous here….

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

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

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

Has your primary care doctor recommended a daily low dose aspirin with your nephrologist’s approval? This is to protect your heart against CVD since you already have CKD which raises the risk of CVD. Now here’s where it gets confusing, the FDA has recently revoked its endorsement of such a regiment.

Let’s see what more we can find out about this dastardly triumvirate.

The National Kidney Foundation at https://www.kidney.org/atoz/content/AcuteKidneyInjury offers this information about AKI.

Acute kidney injury (AKI) is a sudden episode of kidney failure or kidney damage that happens within a few hours or a few days. AKI causes a build-up of waste products in your blood and makes it hard for your kidneys to keep the right balance of fluid in your body. AKI can also affect other organs such as the brain, heart, and lungs. Acute kidney injury is common in patients who are in the hospital, in intensive care units, and especially in older adults.

You did catch that it can affect the heart, right?

Well, what about the heart and its diseases?

This is from the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/heart-disease/basics/definition/con-20034056.

The term “heart disease” is often used interchangeably with the term “cardiovascular disease.”

Cardiovascular disease generally refers to conditions that involve narrowed or blocked blood vessels that can lead to a heart attack, chest pain (angina) or stroke. Other heart conditions, such as those that affect your heart’s muscle, valves or rhythm, also are considered forms of heart disease.

Many forms of heart disease can be prevented or treated with healthy lifestyle choices.

Maybe a reminder of what CKD is will help, too. WebMD at http://www.webmd.com/a-to-z-guides/tc/chronic-kidney-disease-topic-overview#1 offers this simple, comprehensive explanation.

Having chronic kidney disease means that for some time your kidneys have not been working the way they should. Your kidneys have the important job of filtering your blood. They remove waste products and extra fluid and flush them from your body as urine. When your kidneys don’t work right, wastes build up in your blood and make you sick.

Chronic kidney disease may seem to have come on suddenly. But it has been happening bit by bit for many years as a result of damage to your kidneys.

Each of your kidneys has about a million tiny filters, called nephrons. If nephrons are damaged, they stop working. For a while, healthy nephrons can take on the extra work. But if the damage continues, more and more nephrons shut down. After a certain point, the nephrons that are left cannot filter your blood well enough to keep you healthy.

My head is spinning. One could – or could not – lead to another which, in turn, could – or could not – lead to the third. There’s no strict order and there’s no way of knowing until you actually have it. My layperson’s suggestion? Take good care of your kidneys.

Until next week,
Keep living your life!

Singapore Knows CKD

I have an online friend, Leong Seng Chen, who lives in Singapore and is highly active in the Chronic Kidney Disease Awareness community there. Last week, I asked if any readers would like to see certain organizations that weren’t already there added to the blogroll – the list of CKD organizations to the right of the blog itself. He mentioned two but one was a Facebook page and the other was for dialysis. I usually write a blog about current Facebook pages once a year and don’t usually write about dialysis.

His request, which I couldn’t honor, got me to thinking about what is going on for CKD patients in Singapore. So, I started poking around.

The Clinical Journal of the American Society of Nephrology (of all places!) looked into this in 2008, a decade ago, and published the following at http://cjasn.asnjournals.org/content/3/2/610.full.

The NKF Singapore Prevention Program presents a unique approach that incorporates a comprehensive multilevel strategy to address chronic kidney disease …. What makes the NKF Singapore program different is that it incorporated a public health approach to preventing ESRD by using primary, secondary, and tertiary prevention initiatives that can intervene at several stages in the progression of kidney disease. These include 1) surveillance of the general population for urinary abnormalities, 2) screening of the general population for clinical conditions that increase the risk of chronic kidney disease, such as diabetes mellitus and hypertension, 3) the institution of a disease management program to facilitate the management of patients with diabetes and hypertension, which are among the leading causes of ESRD in the country, and to a limited extent, 4) tracking of the individuals who participate in the screening program. Thus, both population-based and high-risk prevention strategies were incorporated into the Singapore Prevention Program.

If you think about it for a moment, this is an astoundingly comprehensive approach to awareness, prevention, and treatment.

I was intrigued and looked further. This chart is from Health Exchange/Singapore at https://www.healthxchange.sg/digestive-system/kidney/chronic-kidney-disease-singapore-stats-prevention-tips. As you can see, it includes statistics up to (and including) 2012. That’s still half a decade ago.

I had naively assumed the National Kidney Foundation was an American organization. Here, in the United States, it is. There, in Singapore, it’s a Singaporean organization.

In Singapore, CKD awareness is not just an adult undertaking. There is a bus provided by the NKF that goes to schools, among other places, to educate young children about how to prevent and recognize the disease, as well as what the kidneys do. Somehow, I found that charming and necessary simultaneously. Why don’t we do that in the United States, I wonder. Take a look at https://www.nkfs.org/kidney-health-education-bus/ to see for yourself what I’m talking about here.

The National Registry of Disease Office was founded by the Ministry of Health in 2001. While the most current statistics I could find, they only record Chronic Kidney Failure, or End Stage Chronic Renal Disease (ESRD). According to their website at https://www.nrdo.gov.sg/about-us,

We are responsible for:
● collecting the data and maintaining the registry on reportable health conditions and diseases that have been diagnosed and treated in Singapore
● publishing reports on these health conditions and diseases
● providing information to support national public health policies, healthcare services and programmes

Meanwhile, the statistics from Global Disease Burden Healthgrove are only four years old and give us a better understanding of what’s happening in Singapore as far as CKD. You can choose different filters at http://global-disease-burden.healthgrove.com/l/67148/Chronic-Kidney-Disease-in-Singapore

As they phrase it: These risk factors contributed to, and were thought to be responsible for, an estimated 100% of the total deaths caused by chronic kidney disease in Singapore during 2013.

I hadn’t been aware of just how involved with CKD Singapore is until Leong started telling me. Now, I’m astounded to learn that this country is number four in deaths from our disease.

Just as in the United States, Singapore posts lists of nephrologists, herbal aids, hospital studies, and even medical tourism sites. While I may or may not approve of such listings, they have opened my eyes to the fact that Singapore plays with the big boys when it comes to CKD. Come to think of it, they may even be more developed when it comes to educating the public. Remember those education buses?

Many thanks to Leong Seng Chen, my CKD friend on Facebook this past year and- hopefully – many more years to come.

On another topic entirely, winning a place in Healthline’s Top Six Kidney Disease Blogs two years in a row spurred me on to finally rework both The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2 into something more manageable: each book will be divided into two books with their own indexes and renamed SlowItDownCKD and the year. Right now I’m working on SlowItDownCKD 2011. Hey, let’s hold the cheering down there.

In addition, all the Kindle versions of each of the SlowItDownCKD books are now $2.99 in order make them more accessible to more people. I’m working on lowering the price for the print books too, but that seems to be more complicated…or maybe I just don’t understand the process yet. I would stick to Amazon.com since B & N.com simply never responds to my attempts to lower the price on any of my books.

By the way, have you heard about this from AAKP? (You can read more about it on their website.)

AAKP has been in the news and across social media lately as public interest continues to build in KidneyWorks – a groundbreaking national initiative we developed in full collaboration with our partners at the Medical Education Institute (MEI). The multiphase initiative aims to identify and address barriers to continued employment for individuals with chronic kidney disease (CKD). Phase I of KidneyWorks involved a consensus roundtable of national experts on kidney disease and workforce experts who convened in Washington, D.C. and the development and public release of a White Paper detailing strategies to help working-age people with non-dialysis chronic kidney disease (CKD) improve their lives, slow CKD progression, and keep their jobs. Phases II and III will involve the development, production and dissemination of strategies and online and mobile tools that help workers, caregivers and employers help achieve the goals of KidneyWorks.

Until next week,
Keep living your life!

Updated

 

 

 

You may have seen the pictures of the updates we’ve been making to our home on Facebook or Instagram. Now, it seemed to me that if I could update my home, I could update SlowItDownCKD’s social media. So I did. The website at www.gail-raegarwood.com is totally SlowItDownCKD now, as are the Instagram, LinkedIn, Twitter, and Pinterest accounts. Of course, the blog was next. I liked my updates, but realized some of the new organizations on the blogroll (the list to the right of the blog) may be unknown to you.

No problem. I’ll just introduce them to you. Allow me to make the introductions…

We’ll go alphabetically down the roll here. The American Association of Kidney Patients, The American Kidney Fund, and The American Society of Nephrology are not new. Just in case you need a reminder of what each is, I’ve linked their titles to the organization. Just click on one of them to go to their websites, as you usually do for any title on the blogroll.

This brings us to The International Federation of Kidney Foundations. This is directly from the young (established 1999) organization’s website:
The International Federation of Kidney Foundations leads the way in the prevention and treatment of kidney disease, through its Membership on all continents around the world. The Federation was formed to foster international collaboration and the exchange of ideas that will improve the health, well-being and quality of life of individuals with kidney disease. We hope to achieve this by advocating for improved health care delivery as well as adopting and disseminating standards of best practice of treatment and care. We facilitate education programs for member organisations, promote research, communicate with other organisations and exchange ideas, particularly those concerning fund raising….
The IFKF helps facilitate the establishment of more kidney foundations and to help existing foundations become more dynamic and effective. Worldwide, most individuals with chronic kidney disease or hypertension are not diagnosed until long after the illness has developed. Moreover, when they are diagnosed they are too often treated sub-optimally or not at all. In many parts of the world, once end stage kidney failure occurs, patients do not have access to dialysis or kidney transplantation.
IFKF members join together with ISN members and kidney patient associations, to celebrate World Kidney Day annually in March, to influence general physicians, primary healthcare providers, health officials and policymakers and to educate high risk patients and individuals.

I’ve been interested in the global effects of Chronic Kidney Disease since I started preparing for Landmark’s 2017 Conference for Global Transformation at which I presented this past May. Writing two articles for their journal opened my eyes- yet again – to the fact that this is not just a local problem, but a worldwide problem. That’s why I included Kidney Diseases Death Rate By Country, On a World Map in the blogroll. I mapped out the statistics I found here on a trifold map to exhibit at the conference. Seeing the numbers spread all over the world was startling, to say the least.

Here is their 2015 global CKD information:
In 2015, the Asian nations of India and China fared the worst when it came to the number of deaths due to this degenerative health condition per thousand people. According to the World Health Organization (WHO) data (I’m interrupting. Would you like a link to WHO on the blogroll?), India had the highest number of kidney diseases deaths. The data put the figure at an astounding 257.9 per 1,000 people. China had the second highest number of deaths due to kidney diseases. Here, the number stood at 187.4 per 1,000 people. Though not as bad as the two Asian nations, the United States was also grappling with the problem of kidney diseases deaths in 2015. The nation had 59.8 deaths (per 1,000 people) due to kidney diseases, while Indonesia, which occupied the fourth place, had an estimated 43 deaths (per 1,000 people) due to kidney diseases. Nations such as Egypt, Germany, Mexico, Philippines, Brazil, Thailand and Japan reported deaths between 20 and 40 (per 1,000 people) due to kidney-related diseases. But, on the positive side, there were many nations in the world where a negligible number of people died due to kidney diseases. It is a noteworthy fact that countries such as Maldives, Vanuatu, Iceland, Grenada, Comoros, Belize, and many others, reported a zero figure in 2015.

But then I wanted to cover more localized information about CKD, so I included The National Chronic Kidney Disease, Fact Sheet, 2017. This is basically facts with pictograms that make the information about the United States’ CKD information more visual and easier to grasp. The information is more distressing each year the site is updated.

Fast Stats

• 30 million people or 15% of US adults are estimated to have CKD.*

• 48% of those with severely reduced kidney function but not on dialysis are not aware of having CKD.

• Most (96%) people with kidney damage or mildly reduced kidney function are not aware of having CKD.

After several sites that are not new, the last new site, other than direct links to SlowItDownCKD’s kidney books, is The Kidney & Urology Foundation of America. Why did I include that? Take a look at their website. You’ll find this there:
The Kidney & Urology Foundation focuses on care and support of the patient, the concerns of those at risk, education for the community and medical professionals, methods of prevention, and improved treatment options.
What Sets Us Apart?
The Kidney & Urology Foundation of America is comprised of a dedicated Executive Board, medical advisors, educated staff and volunteers who provide individualized support to patients and their families. Adult nephrologists and transplant physicians comprise our Medical Advisory Board, Board – certified urologists serve on the Urology Board, and pediatric nephrologists and urologists represent the Council on Pediatric Nephrology and Urology.
We are a phone call or e-mail click away from getting you the help you need to cope with a new diagnosis, a resource for valuable information on kidney or urologic diseases, a window into current research treatment options or a link to a physician should you need one.

Are there any organizations I’ve left out that you feel should be included? Just add a comment and I’ll be glad to take a look at them. I am convinced that the only way we’re going to get any kind of handle on Chronic Kidney Disease as patients is by keeping each other updated.

Until next week,
Keep living your life!

Two Masters

A friend of mine, the one I mentioned when I wrote about renal sally ports, recently has had a relapse. Yep, he neglected to take his medications at the proper times. That can cause havoc for mental illness, especially bipolar disorder. It got me to thinking. What if my friend had Chronic Kidney Disease AND bipolar disease? How could he handle both diagnoses at the same time?

Let’s start at the beginning. There are certain drugs I take in the hopes of delaying dialysis as long as possible. One of those is the ACE Inhibitor I’d been taking for hypertension for about two decades before I was even diagnosed with CKD. Here’s the definition from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease: “ACE Inhibitor: A blood pressure medication that lowers protein in the urine if you have CKD.”

It works by both relaxing the blood vessels and reducing the blood volume. This, in turn, lowers your blood pressure which, in turn, lowers your heart’s oxygen needs. And the problem for my friend would be? Well, maybe just remembering to take the medication each day.

However, according to MedicineNet.com at http://www.medicinenet.com/ace_inhibitors/page2.htm,
The most common side effects are:
• Cough
• Elevated blood potassium levels
• Low blood pressure
• Dizziness
• Headache
• Drowsiness
• Weakness
• Abnormal taste (metallic or salty taste)
• Rash
• Chest pain
• Increased uric acid levels
• Sun sensitivity
• Increased BUN and creatinine levels

Did you notice increased uric acid levels, and increased BUN and creatinine levels? This could be a dicey medication for CKD patients if they did not heed their doctor’s advice once (s)he has evaluated the patient’s labs. That’s the problem here: not having the ability to be a compliant patient during a bipolar episode.

I was also prescribed a drug for cholesterol, a statin. This drug inhibits (the word of the day) an enzyme in the liver that produces lipids. As reported in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:
According to Dr. Dr. Robert Provenzano, chief of nephrology at St. John Hospital and Medical Center in Detroit, “…LDL, bad cholesterol, directly impacts acceleration of Chronic Kidney Disease.” One of the possible side effects is of this drug is Type 2 Diabetes. All I can say about that is thank goodness these side effects are not the norm.

Here’s the problem: statins have to be taken at night. That’s when the body produces cholesterol. Again, can my friend be compliant during an episode? What about the drugs he already takes? Are they going to somehow interfere with these common drugs for CKD?

Lithium is the usual drug for him. This is from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:
“There were two Plenary Sessions I attended at the Southwest Nephrology Conference I attended last weekend. It was at the second one, ‘Psychiatric issues in kidney patients’ that I suddenly sprang to attention. What was this man saying? Something about lithium doubling the risk for Chronic Kidney Disease? And I was off… how many psychiatric patients knew that fact? How many of their caretakers knew that just in case the patient was not responsible at the time of treatment? What about children? Did their parents know? Was a screening for CKD performed BEFORE lithium was prescribed?”

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

“What is lithium?
Lithium is a common medicine used to help calm mood for treating people with mental disorders. Since such disorders need lifelong treatment, long-term use of lithium may be harmful to organs, such as the kidneys.

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.”

I keep reminding myself that the word “may” appears over and over again. Yet, since my friend either wasn’t taking his medication at all or not taking it as prescribed, it wasn’t working…and he is still at risk for CKD.

I found this tidbit on Drugs.com at https://www.drugs.com/interactions-check.php?drug_list=1477-0,1489-0, ACE Inhibitors: “…may increase the blood levels and effects of lithium. You may need a dose adjustment or more frequent monitoring by your doctor to safely use both medications.” Wait. So you need an ACE Inhibitor if you have CKD, but it can interfere with the lithium you take if you’re bi-polar. And statins? While I couldn’t find any interactions, I did find the caution that there may be some and to check with your doctor. I am aware he takes an anti-depressant, but in researching, have discovered there are many that are safe to take with CKD.

My friend usually goes to his medical appointments, but he neglects to mention certain symptoms and sometimes has trouble telling reality from non-reality. Does he know whether his doctor has warned him about the higher risk of CKD or not? Does he know that he may develop a form of diabetes from long term use of lithium? Does he know that if even one of his parents has CKD, his risk is doubled yet again?

Tomorrow is July 4th, the day the United States celebrates its independence from the tyranny of England. Where is my friend’s independence from the tyranny of his mental illness? The English and the United States have learned to peacefully share our existences (right, English readers?). Here’s hoping my friend can learn to peacefully share his existence with bipolar disorder… and CKD should he develop it. Heaven forbid.

Until next week,
Keep living your life!

Gluten Free

“…I started GF mid-April & my June lab work showed significant improvement. My next lab work is not until August, but I feel & look so much better, and because my BP dropped so much, my nephrologist took me off hydrochlorothorozide and reduced irbesartan from 300 to 75.” This is a small part of the message I received from a reader… and it intrigued me.

I take hydrochlorothiazide.  I know I looked it up at the time it was prescribed, something about fluid. Hmmm, it wouldn’t hurt to look it up again to refresh my (and your) memory. According to Medicinenet.com at http://www.medicinenet.com/hydrochlorothiazide/page2.htm, hydrochlorothiazide is prescribed for the following reasons:

“Hydrochlorothiazide is used to treat excessive fluid accumulation and swelling (edema) of the body caused by heart failure, cirrhosis, chronic kidney failure, corticosteroid medications, and nephrotic syndrome. It also is used alone or in conjunction with other blood pressure lowering medications to treat high blood pressure…. Hydrochlorothiazide can be used to treat calcium-containing kidney stones because it decreases the amount of calcium excreted by the kidneys in the urine and thus decreases the amount of calcium in urine to form stones….”

I didn’t recognize irbesartan specifically, although the sartan part was  familiar. According to the same source, but this time at http://www.medicinenet.com/irbesartan/article.htm, “Irbesartan is used to treat high blood pressure (hypertension) and to help protect the kidneys from damage due to diabetes. Lowering high blood pressure helps prevent strokes, heart attacks, and kidney problems. Irbesartan belongs to a class of drugs called angiotensin receptor blockers (ARBs). It works by relaxing blood vessels so that blood can flow more easily.”

Oh, of course! I’m taking losartan for the same reason. I’d had hypertension for over 20 years before I was diagnosed with Chronic Kidney Disease. Even if I hadn’t, once I was diagnosed with CKD, a drug like this would have been prescribed.  As a matter of fact, when I complained to my primary care doctor that I was taking too many pills (mostly supplements), she came up with one that combined hydrochlorothiazide and losartan.

 

 

 

 

But I digress. So, it’s a good thing that this reader no longer needs her hydrochlorothiazide since she has no swelling and that her irbesartan has been reduced since her blood vessels are becoming more relaxed. Wait a minute. Why wouldn’t every CKD patient want these results? Ah, but I’ve left something out of the equation.

She’s gone GF or Gluten Free. Ready? Here is the definition of gluten from the Oxford Dictionary at https://en.oxforddictionaries.com/definition/GLUTEN “A mixture of two proteins present in cereal grains, especially wheat, which is responsible for the elastic texture of dough.” Oh, come on. There must be more to it than that. Let’s try gluten free instead of gluten. Oh, my! NephCure at https://nephcure.org/livingwithkidneydisease/diet-and-nutrition/gluten-free-diet/

has an entire page devoted to going gluten free. But I am getting ahead of myself here.

Let’s go back to gluten, this time sources. The American Diabetes Association at http://www.diabetes.org/food-and-fitness/food/planning-meals/gluten-free-diets/what-foods-have-gluten.html  offers these lists:

What Foods Have Gluten?

Gluten is found in wheat, rye, barley and any foods made with these grains. Avoiding wheat can be especially hard because this means you should avoid all wheat-based flours and ingredients. These include but are not limited to:
White Flour
Whole Wheat Flour
Durum Wheat
Graham Flour
Triticale
Kamut
Semolina
Spelt
Wheat Germ
Wheat Bran

Common foods that are usually made with wheat include:
Pasta
Couscous
Bread
Flour Tortillas
Cookies
Cakes
Muffins
Pastries
Cereal
Crackers
Beer
Oats (see the section on oats below)
Gravy
Dressings
Sauces
This may seem like a long list, but there are still plenty of gluten-free foods out there! Choose from many fresh, healthy foods like fruits, vegetables, beans, dairy, nuts and gluten-free grains like quinoa or rice. There are also gluten-free versions of many of the foods above available in most grocery stores. You just have to look for them!

Gluten Surprises
You may not expect it, but the following foods can also contain gluten:
broth in soups and bouillon cubes
breadcrumbs and croutons
some candies
fried foods
imitation fish
some lunch meats and hot dogs
malt
matzo
modified food starch
seasoned chips and other seasoned snack foods
salad dressings
self-basting turkey
soy sauce
seasoned rice and pasta mixes
There are also many additives  and ingredients in packaged foods that may contain gluten. Always check labels and ingredient lists for these. For a more comprehensive list of gluten-containing additives, contact your local celiac support group.

Other Tips to Remember
Don’t forget that ingredients in food products change frequently, so always check the label before buying packaged foods. Remember that “wheat-free” does not automatically mean “gluten-free.” While a product may not contain wheat, it can still contain rye or barley in some form. If you have any question about whether a food contains gluten, contact the manufacturer directly.

The Fuss About Oats
Pure oats are a gluten-free food, but most commercially processed oats have been contaminated during the growing, harvesting or processing stages. In the past, many experts recommended completely avoiding oats  those on a gluten-free diet in addition to wheat, barley, and rye. Now, some oats are grown and processed separately, and can be labeled “gluten-free.”

I see an awful lot of the same foods to avoid on this list as I do on the renal diet. I wonder if that would make it easier to go gluten free if you decide to?

Phosphorous! Aha. We, as CKD patients, need to limit our phosphorous intake. Have you noticed that many of these foods are high phosphorous? Is it possible that the gluten free diet will help us with our renal diets? I’m not suggesting that you go gluten free and I’m not suggesting that you don’t. I am saying the idea is, well, intriguing.

Before I forget: SlowItDownCKD has been chosen as one of Healthline’s top kidney disease blogs for 2017. Second year in a row!!!!! AND I’ve lowered the price of all five of my digital kidney books to $2.99 to spread the awareness of CKD out there more effectively. Oh, yes, you can still get them for free on Kindle Unlimited.

Until next week,

Keep living your life!

 

 

The Other Side of the Coin

Here’s hoping everyone had a wonderful Father’s Day. During our relaxed celebration for Bear, I found myself ruminating about how many times we’ve celebrated this holiday for fathers no longer with us and how many more times  we would be able to celebrate it for the fathers who are. They are aging. Wait a minute, that means their kidneys are aging, too.

Yep, that meant a new blog topic. We already know that kidney function declines with age. According to the National Kidney Foundation at https://www.kidney.org/blog/ask-doctor/what-age-do-kidneys-decline-function, “The general ‘Rule of Thumb’ is that kidney function begins to decline at age 40 and declines at a rate of about 1% per year beyond age forty. Rates may differ in different individuals.” 40?

Well, what is a perfect kidney function score… if such exists? Back  to the NKF, although they call this a ‘normal’ not ‘perfect’ GFR, this time at https://www.kidney.org/atoz/content/gfr:

In adults, the normal GFR number is more than 90. GFR declines with age, even in people without kidney disease.
Average estimated GFR
20–29     116
30–39     107
40–49     99
50–59     93
60–69     85
70+         75

Got it. So even for a normal 70+ person, I have CKD with my 50ish GFR.

It seems I’m getting a bit ahead of myself here. I haven’t defined GFR yet. Let’s take a gander at What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for that definition,

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

No, that won’t do. I think we need more of an explanation. This is from SlowItDownCKD 2015:

“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.

Many thanks to MedlinePlus at http://www.nlm.nih.gov/medlineplus/ency/article/007305.htm for the definition.”

Okay, I think that’s clear now. However, that’s not what I wanted to know. This is – if kidney function already declines with age, does having CKD age us more quickly?

“Premature aging is a process associated with a progressive accumulation of deleterious changes over time, an impairment of physiologic functions, and an increase in the risk of disease and death. Regardless of genetic background, aging can be accelerated by the lifestyle choices and environmental conditions to which our genes are exposed. Chronic kidney disease is a common condition that promotes cellular senescence and premature aging through toxic alterations in the internal milieu. This occurs through several mechanisms, including DNA and mitochondria damage, increased reactive oxygen species generation, persistent inflammation, stem cell exhaustion, phosphate toxicity, decreased klotho expression, and telomere attrition….”

You can read the entire fascinating (to my way of thinking) American Journal of Kidney Disease article at http://www.natap.org/2013/HIV/PIIS0272638612015922.pdf.

Nature.com at http://www.nature.com/nrneph/journal/v10/n12/full/nrneph.2014.185.html seems to agree that CKD accelerates aging:

“Chronic kidney disease (CKD) shares many phenotypic similarities with other chronic diseases, including heart failure, chronic obstructive pulmonary disease, HIV infection and rheumatoid arthritis. The most apparent similarity is premature ageing, involving accelerated vascular disease and muscle wasting. We propose that in addition to a sedentary lifestyle and psychosocial and socioeconomic determinants, four major disease-induced mechanisms underlie premature ageing in CKD: an increase in allostatic load, activation of the ‘stress resistance response’, activation of age-promoting mechanisms and impairment of anti-ageing pathways. The most effective current interventions to modulate premature ageing—treatment of the underlying disease, optimal nutrition, correction of the internal environment and exercise training—reduce systemic inflammation and oxidative stress and induce muscle anabolism. Deeper mechanistic insight into the phenomena of premature ageing as well as early diagnosis of CKD might improve the application and efficacy of these interventions and provide novel leads to combat muscle wasting and vascular impairment in chronic diseases.”

Remember the friend of my daughter’s who hadn’t seen me in five years who (thought) he whispered to her, “Your mom got so old.” Now I understand why, although I have noticed this myself. I look in the mirror and see the bags under my eyes that are not errant eye liner. I see the lines in my faces, especially around my mouth, that weren’t there just a year ago. I see the stubborn fat around my middle that frustrates me no end. I see that it takes me forever (okay, so I’m being figurative here, folks) to recover from the flu, and I see how easily I become – and stay – tired. The dancer in me screams, “No fair!” The adult patient in me says, “Deal with it,” so I do.

I’ve used quite a bit of advanced terminology today, but haven’t explained a great deal of it in the hopes that when you read these articles their meanings will become clear in context. If they don’t, please leave me a comment and I will explore each one of them in future blogs. Who knows? Maybe I’ll need to devote an entire blog to whichever term it is you’d like to know more about.

Don’t let our premature aging get you down. We can work against it and, hopefully, slow it down just as we do with the progress of the decline in our kidney function.

I have been saving this bit of news for the last item in today’s blog. The world is not going to suffer if it doesn’t know about my photography, my teaching ,writing, or acting careers. But, when it comes to CKD, my writing can add something for those 31 million people who have it…especially the 90% that haven’t been diagnosed yet. What I did was completely change my web site so that it deals only with my Chronic Kidney Disease Awareness Advocacy (It’s all caps because that’s the way I think of it.) under the umbrella of SlowItDownCKD. I have to admit, I was surprised to see how active I’ve been in the last decade. It’s different when you see your work listed all in one place. Take a look at www.gail-raegarwood.com and tell me what you think, would you?

Until next week,

Keep living your life!

 

 

CKD and the VA or It’s Not Alphabet Soup at All

Today is Memorial Day in the United States. It is not a day to say Happy Memorial Day since it is a day commemorating those who gave their lives for our freedom. Lots of us have bar-b-ques or go to the park or the beach to celebrate. No problem there as long as we remember WHO we are celebrating. I promise: no political rant here, just plain appreciation of those who serve(d) us both living and dead. Personally, I am honoring my husband, my step son-in-law, and all those cousins who just never came home again.

I explained the origins of this day in SlowItDownCKD 2015 (May 25), so won’t re-explain it here. You can go to the blog and just scroll down to that month and year in the drop down menu on the right side of the page under Archives. I was surprised to read about the origins myself.

We already know that Chronic Kidney Disease will prevent you from serving your country in the military, although there are so many other ways to serve our country. This is from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

‘The Department of Defense’s Instruction for Medical Standards for Appointment, Enlistment, or Induction in the Military Services establishes medical standards, which, if not met, are grounds for rejection for military service. Other standards may be prescribed for a mobilization for a national emergency.

As of September 13, 2011, according to Change 1 of this Instruction, the following was included.

‘Current or history of acute (580) nephritis or chronic (582) Chronic Kidney Disease of any type.’

Until this date, Chronic Kidney Disease was not mentioned.”

You can read the entire list of The Department of Defense’s Instruction for Medical Standards for Appointment, Enlistment, or Induction in the Military Services at http://dtic.mil/whs/directives/corres/pdf/613003p.pdf. You’ll also find information there about metabolic syndrome, high blood pressure, high cholesterol, diabetes, and pre-diabetes as conditions for non-enlistment.

This got me to thinking. What if you were had already enlisted when you developed CKD. Yes, you would be discharged as medically unfit, but could you get help as a veteran?

According to the Veterans Administration at https://www.research.va.gov/topics/Kidney_disease.cfm#research4,

“In 2012, VA and the University of Michigan began the work of creating a national kidney disease registry to monitor kidney disease among Veterans. The registry will provide accurate and timely information about the burden and trends related to kidney disease among Veterans and identify Veterans at risk for kidney disease.

VA hopes the kidney disease registry will lead to improvements in access to care, such as kidney transplants. The department also expects the registry will allow VA clinicians to better monitor and prevent kidney disease, and will reduce costs related to kidney disease.”

That’s what was hoped for five years ago. Let’s see if it really came to fruition.

Oh, this is promising and taken directly from The U.S. Department of Veterans Affairs.

“VA eKidney Clinic

The VA eKidney Clinic is now available! The eKidney Clinic offers patient education through interactive virtual classrooms where Veterans can learn how to take care of their kidneys and live a good life with kidney disease. Please visit the VA eKidney Clinic website or click on the picture below. For additional information see the eKidney Clinic Patient Information Brochure.”

The Veterans Health Administration doesn’t just provide information, although I must say I was delighted to see the offer of Social Work Services. There is also treatment available. Notice dialysis mentioned in their mission statement.

“Mission: The VHA Kidney Program’s mission is to improve the quality and consistency of healthcare services delivered to Veterans with kidney disease nationwide. The VHA Kidney Program provides kidney-related services to dialysis centers throughout VA’s medical centers. Professional guidance and services are available in the form of consultation and policies developed by VA kidney experts. These experts are dedicated to furthering the understanding of kidney disease, its impact on Veterans, and developing treatments to help patients manage disease symptoms. In addition, the VHA Kidney Program provides VA healthcare professionals with clinical care, education, research, and informatics resources to improve healthcare at local VA dialysis facilities.”

I did find it strange that there was a cravat on the Veterans Administration site that they do not necessarily endorse the VHA Kidney Program, especially since it is so helpful.

 

 

 

How involved is the VA with CKD patients? Take a look for yourself at this 2015 statistics by going to https://www.va.gov/HEALTH/services/renal/documents/Kidney_Disease_and_Dialysis_Services_Fact%20Sheet_April_2015.pdf

• All Veterans enrolled in VA are eligible for services, regardless of service connection status
• Enrolled Veterans can receive services from the VA or from community providers under the Non-VA Care Program if VA services are unavailable
• 49 VA health care facilities offer kidney disease specialty care (nephrology services)
• 96 VA facilities offer inpatient and/or outpatient dialysis; 25 centers are inpatient-only. Of the 71 VA outpatient dialysis centers, 64 are hospital based units, 2 are joint VA/DoD units, 4 are freestanding units, and one is within a community based outpatient clinic (CBOC)
• VA enrollees must be offered the option of home dialysis provided either directly by the VA or through the Non-VA Care Program
• 36 outpatient hemodialysis centers offer home dialysis care directly.
• 5 VA medical centers host kidney transplantation programs.
• VA Delivered Kidney Care (Calendar Year 2013) 13,794 Unique Veterans receiving dialysis paid for by VA; representing an annual increase of 13% since 2008. 794 Veterans received home dialysis; 55percent (434) by VA facilities and 45percent (360) under the Non-VA Care Program.
• Increasing use of telehealth services to increase Veteran access to kidney specialty care Secure messaging: 7,319 messages, Clinical video telehealth: 4,977 encounters
• VA Kidney Research (FY ’14) the research budget for the study of kidney disease has been $18.5 million per year for the past 5 years (FY ’10-FY ’14). The VA Cooperative Studies Program has supported national clinical trials addressing the best treatment of Veterans with CKD since at least 1998.

It seems to me our veterans are covered. Now if we could only make sure the rest of us stay covered no matter what bills the current administration signs into law.

Until next week,

Keep living your life!

So That’s How It’s Decided

SlowItDownCKD’s being honored as one of the best kidney disease blogs for 2016 has had some interesting results.  The first was the health and food writer’s guest blog about hydration for Chronic Kidney Disease on March 6^th. Then it was the guest blog by the Social Security Administration’s Outreach Director. This week, it’s a telephone interview with Dr. Michael J. Germain, a nephrologist from Massachusetts, about some of the suggested guidelines in the upcoming KDIGO for 2016.

Got it:  backtrack. Let’s start with KDIGO. This stands for KIDNEY DISEASE | IMPROVING GLOBAL OUTCOMES. Their homepage at KDIGO.org states, “KDIGO MISSION – Improving the care and outcomes of kidney disease patients worldwide through the development and implementation of global clinical practice guidelines.” Anyone up for visiting their offices? What an excuse to go to Belgium!

Okay, now we know what the organization is and what it does, but why Dr. Germain? I asked the same question. Although he is not on the KDIGO panel of doctors who decide what the next year’s development and implementation will be, he is well versed with the topic having published or having been part of the writing for an overwhelming number of articles in such esteemed journals as the American Journal of Kidney Disease, Kidney International, and The Clinical Journal of the American Society of Nephrology, as well as contributing to textbooks, … and he could simplify the medicalese in the guidelines to simple English for this lay person.

If you think I remind you quite often that I’m not a doctor, you should read my emails to our liaison. State I’m not a doctor, repeat, state I’m not a doctor, repeat. She had the good graces to laugh at my insecurities.

The latest guideline updates have not been released yet, so both the good doctor (over 40 years as a nephrologist) and I (CKD patient and awareness advocate for a decade) were working off the draft that was released last August.

Dr. Germain also made it a point to ensure that I understand the guidelines are based upon expert opinion, not evidence. That made sense to me since he is not only a patient seeing nephrologist, but also a research nephrologist – to which his numerous publications will attest. With me being a lay person, he “had a lot of ‘splaining to do.” I had to admire his passion when discussing the vitamin D guidelines.

In the draft guidelines, it was suggested that hypercalcemia be avoided. I know; it’s a new word. We already know that hyper is a prefix meaning over or too much; think excessive in this case. Calcemia looks sort of like calcium. Good thinking because, according to Healthline at http://www.healthline.com/health/hypercalcemia:“Hypercalcemia is a condition in which you have too high a concentration of calcium in your blood. Calcium performs important functions, such as helping keep your bones healthy. However, too much of it can cause problems….”

This excerpt from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease explains how calcium works with vitamin D and phosphorous.

“The kidneys produce calcitrol which is the active form of vitamin D. The kidneys are the organs that transfer this vitamin from your food and skin [sunshine provides it to your skin] into something your body can use. Both vitamin D and calcium are needed for strong bones. It is yet another job of your kidneys to keep your bones strong and healthy. Should you have a deficit of Vitamin D, you’ll need to be treated for this, in addition for any abnormal level of calcium or phosphates. The three work together. Vitamin D enables the calcium from the food you eat to be absorbed in the body. CKD may leech the calcium from your bones and body.”

The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 offers us more information.

“The parathyroid glands are located in the neck, near or attached to the back side of the thyroid gland. Parathyroid hormone controls calcium, phosphorus, and vitamin D levels in the blood and bone. Release of PTH is controlled by the level of calcium in the blood. Low blood calcium levels cause increased PTH to be released, while high blood calcium levels block PTH release. …  Thanks to MedLine Plus at http://www.nlm.nih.gov/medlineplus/ency/article/003690.htm .”

As Dr. Germain explained, CKD patients break down vitamin D quickly since they have more of a catabolic enzyme, the enzyme that converts the vitamin D to an inactive form. Oh, right, catabolic means “any destructive process by which complex substances are converted by living cells into more simple compounds, with release of energy” according to Dorland’s Medical Dictionary for Health Consumers.

Here’s the problem: vitamin D can cause hypercalcemia. Dr. Germain phrased it, “In fact, the draft guideline recommends active vitamin D hormone therapy not to be routinely used in patients with CKD stage 3 or 4 due to increased risk of hypercalcemia and the lack of efficacy shown in studies.” Therefore, he urges nephrologists to wait until stage 4 or 5 to recommend vitamin D since hyperparathryoidism may lead to bone damage. But just as in any disease, it is harder to treat bone damage once it’s already there. His recommendation: Ask about your parathyroid level every three to six months and discuss the results of your tests with your nephrologist. By the way, his feeling – and obviously mine – is that preserving the kidney function is the most important job of the nephrologist and the patient.

I am eager to see the guidelines published so I can write more about them. The conclusion about vitamin D is based upon what nephrologists have seen in their practices since the last set of KDIGO guidelines were published in 2009. It will affect the way our nephrologists speak with us about our treatment, just as the other guidelines for 2016 will.

That will affect the way we self-manage. For example, I restrict my sun time to 15 minutes a day based on these findings. Take a look at how you self-manage. It should bring up a list of questions for you to ask your nephrologist at your next appointment.

You should also know the KDIGO deals with all stages of CKD including End Stage CKD and pediatric CKD.

Until next week,

Keep living your life!

Getting Juiced

I have the gentlest nephrologist in the world! Well, I think so anyway. He has been cautioning me about my weight for years. Yes, there it is again: my weight. Here I was finally coming to terms with being a chubby since nothing I was doing seemed to work to lose the weight. That’s when he tossed out a bombshell.

We all know that increased weight can raise your blood pressure which, in turn, negatively affects your kidneys. I was so pleased with myself for having raised my GFR another three points on my last blood test that I didn’t understand how I could be leaking protein into my urine at the same time. Wasn’t protein in the urine simply an indication that you have Chronic Kidney Disease? Didn’t I already know that? So why was protein leaking into my urine to the tune of 252 mg. when the norm was between 15-220 mg?

I know, I know: back up a bit. Thanks for the reminder. GFR is defined in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease this way:

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

Oh, and just in case you’ve forgotten, this excerpt from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 is a good reminder about the stages of CKD.

“Different stages require different treatment or no treatment at all.  There are five stages with the mid-level stage divided into two parts. The higher the stage, the worse your kidney function.

Think of the stages as a test with 100 being the highest score.  These are the stages and their treatments:

STAGE 1: (normal or high) – above 90 – usually requires watching, not treatment, although many people decide to make life style changes now: following a renal diet, exercising, lowering blood pressure, ceasing to smoke, etc.

 STAGE 2: (mild) – 60-89 – Same as for stage one

STAGE 3A: (moderate) – 45-59 – This is when you are usually referred to a nephrologist [Kidney specialist]. You’ll need a renal [Kidney] dietitian, too, since you need to be rigorous in avoiding more than certain amounts of protein, potassium, phosphorous, and sodium in your diet to slow down the deterioration of your kidneys. Each patient has different needs so there is no one diet.  The diet is based on your lab results.  Medications such as those for high blood pressure may be prescribed to help preserve your kidney function.

STAGE 3B: (moderate) – 30-44 – same as above, except the patient may experience symptoms.

STAGE 4:  (severe 15-29) – Here’s when dialysis may start. A kidney transplant may be necessary instead of dialysis [Artificial cleansing of your blood]. Your nephrologist will probably want to see you every three months and request labs before each visit.

STAGE 5: (End stage) – below 15 – Dialysis or transplant is necessary to continue living.

Many thanks to DaVita for refreshing my memory about each stage.”

Okay, back to the connection between spilling protein into your urine (called proteinuria) and CKD. This is from the recently published SlowItDownCKD 2016:

“In The Book of Blogs: Moderate Chronic Kidney Disease, Part 1, The National Institutes of Health helped me explain why this combination of excess weight and pre-diabetes was a problem for CKD patients:

‘High blood glucose and high blood pressure damage the kidneys’ filters. When the kidneys are damaged, proteins leak out of the kidneys into the urine. The urinary albumin test detects this loss of protein in the urine. Damaged kidneys do not do a good job of filtering out wastes and extra fluid. Wastes and fluid build up in your blood instead of leaving the body in urine.’”

Let’s say you don’t have pre-diabetes, but do have CKD. Does proteinuria still make it worse? Damn! It does. This explanation is from SlowItDownCKD 2015:

“The problem is that antibodies are made up of protein. Antibodies is defined by Dictionary.com at http://dictionary.reference.com/browse/antibodies as

‘A protein substance produced in the blood or tissues in response to a specific antigen, such as a bacterium or a toxin, that destroys or weakens bacteria and neutralizes organic poisons, thus forming the basis of immunity.’

Lose lots of protein into your urine and you’re losing some of your immunity. In other words, you’re open to infection.”

I guess that explains why I magically developed a UTI after years of not having any.

I have gone so far afield from what I intended to write about on this last Monday of National Kidney Month. What was that, you ask? It was my nephrologist’s strong suggestions for immediate weight loss: juicing. I was so surprised.

After all that writing about eating the raw vegetables for roughage and sticking to only three specified amount servings of each daily, this expert in his field was telling me to ignore all that and throw myself into juicing for the immediate future. But you can bet I’ll try it; no way I’m throwing nine years of keeping my kidneys healthier and healthier out the window.

I can’t tell you if it works since I only started yesterday, but I can tell you it doesn’t taste bad. I’m learning how to use this fancy, dancy blender we got three years ago that had just been sitting on the shelf. Experimenting with the consistency has caused a mess here and there, but oh well.

My first juicing experience included kale, celery, lemons, cucumbers, and ginger. I definitely need to play with my combinations. I also think I made far too much. Luckily Bear was in the house and shouted out that the machine was making that noise because I didn’t add enough water. Water? You’re supposed to add water?

I’ll keep you posted on these experiments if you’ll get yourself tested for CKD. It’s just a blood and urine test. Fair deal?

Until next week,

Keep living your life!

Women Marching to the Kidney’s Beat

In keeping with my theme of March being Women’s History Month – minus the history – and National Kidney Month, today’s blog will be about those women around the world who have contributed to Chronic Kidney Disease knowledge. Two such women, Dr. Vanessa Grubbs and Dr. Bessie Young, were highlighted in February’s tribute to Black History Month and women in nephrology. Thank you again, ladies, for all you do for CKD patients.

When you realize the study of nephrology as we know it is only a little over 50 years old (Incredible, isn’t it?), you’ll understand why I raided The International Society of Nephrologists (ISN) October 2010 issue at http://www.theisn.org/images/ISN_News_Archive/ISN_News_35_October_2010_LR.pdf for the following information. I’ve added notes for clarification when needed.

United States: An accomplished researcher and physician, Josephine Briggs is a former ISN councilor and former councilor and Secretary of ASN (American Society of Nephrologists). She is the former director of the Division of Kidney, Urologic, and Hematologic Diseases, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), US National Institutes of Health (NIH), and was responsible for all NIH funded renal research in the 1990s. Today, she is Director of the National Center for Complementary and Alternative Medicine. She maintains a lab at NIDDK, researching the renin-angiotensin system, diabetic nephropathy, circadian regulation of blood pressure, and the effect of antioxidants in kidney disease.

Europe: Rene Habib, who passed away (in 2010), was a truly pioneering renal pathologist. She provided the first description of many renal diseases and worked with ISN founder Jean Hamburger to establish nephrology as a new discipline in Europe. Her contributions and energy were central to establishing pathology as an essential and integrated component of this new field worldwide.

India: Vidya N. Acharya was the first woman nephrologist in India and trained some 150 internists in nephrology. For three decades, her research focused on Urinary Tract Infection. She was a consultant nephrologist at Gopalakrishna Piramal Memorial Hospital and director of the Piramal Institute for training in Dialysis Technology, Renal Nutrition and Preventive Nephrology in Mumbai. She received a Lifetime Achievement Award from the Indian Society of Nephrology in 2007.

China: HaiYan Wang is the Editor of Kidney International China and has been an ISN and ASPN (American Society of Pediatric Nephrology) councilor and Executive Committee member as well as a member of the editorial boards of Chinese and international renal journals. She has published over 200 articles and books in Chinese and English. She graduated from Beijing Medical University. After three years of internship, she became a nephrology fellow at the First Hospital Beijing Medical University. Since 1983, she moved on to Chief of Nephrology and later became Professor of the Department of Medicine at the First Hospital Beijing. She has been Chairman of the Chinese Society of Nephrology and is Vice President of the Chinese Medical Association. Her unit is the largest training site for nephrology fellows in China.

United Arab Emirates: Mona Alrukhaimi is co-chair of the ISN GO (International Society of Nephrologists Global Outreach Programs) Middle East Committee, and the leader of the KDIGO (Kidney Disease: Improving Global Outcomes) Implementation Task Force for the Middle East and African regions. She is also a Member of the Governing Board of the Arab Society of Nephrology and Renal Transplantation. Since 2006, she has actively organized World Kidney Day activities in the United Arab Emirates and prepared the past four rounds of the ISN Update Course in Nephrology. Having played an active role in the Declaration of Istanbul on Organ Trafficking and Transplant Tourism, she contributes to serve on the custodian group and takes part in the Steering Committee for Women in Transplantation under The Transplantation Society.

South Africa: Saraladevi Naicker carried the weight of setting standards and provided the first training program for nephrologists in Africa over the last decade (Remember this article was published in 2010.). Specializing in internal medicine, she trained in Durban and later helped set up a Transplant Unit in the Renal Unit at Addington Hospital. In 2001, she became Chief Specialist and Professor of Renal Medicine at University of Witwatersrand in Johannesburg and in 2009 was appointed Chairman of Medicine at Wits. She is proud that there are currently (Again: in 2010) six postgraduate students from Africa studying for higher degrees in nephrology under her tutelage. Over the years, Naicker’s unit has served as the main training site for young nephrologists from across Africa and many individuals trained by her are currently practicing in Africa. Naicker received the Phillip Tobias Distinguished Teaching Award in 2006, an honor which bears testimony to her teaching prowess.

Israel: Batya Kristal is Professor of Medicine at the Technion Medical School, Haifa. She is the first woman to direct an academic nephrology department in Israel. At the Western Galilee Hospital, Nahariya, she leads a translational research project focusing on different aspects of oxidative stress and inflammation. She also heads a large clinical nephrology and dialysis program, which uniquely integrates staff and patients from the diverse ethnic population of the Galilee. Founder of the Israeli NKF, initiator and organizer of the traditional annual international conferences at Nahariya, she is truly an important role model for women in the country.

Australia: After holding resident positions in medicine and surgery and as registrar in medicine at the Baragwanath Hospital in Johannesburg, Priscilla Kincaid-Smith was director and physician of Nephrology at Royal Melbourne Hospital and Professor of Medicine at University of Melbourne. She demonstrated overwhelming evidence of the link between headache powders and kidney damage and contributed to research on the links between high blood pressure and renal malfunction. The only female ISN President so far, she was named Commander of the Order of the British Empire “for services to medicine”, was awarded the David Hume Award from the National Kidney Foundation (USA) and became a Companion of the Order of Australia.

There’s very little room for me to add my own words this week so I’ll use them to add myself as a lay woman in nephrology (What hubris!) to let you know that the edited digital version of SlowItDownCKD 2016 will be out on Amazon later this week. You guessed it: in honor of National Kidney Month.

 

Until next week,

Keep living your life!

Processed Foods: Yea or Nay?

Good morning, world! It’s still March which means it’s still National Kidney Month here in the USA and Women’s History Month. I’m going to take liberties with the ‘history’ part of Women’s History Month just as I did last month with Black History Month. Today we have a guest blog from a woman – Diana Mrozek, RDN – which deals with the kidneys.

You know you’re entitled to a free nutritional appointment yearly after two the first year if you have CKD. Here’s what I wrote about that in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“Most people think of a nutritionist as a luxury even if they do have a chronic disease.  When I pulled out my checkbook to pay my renal dietitian [RD], I was told the government will pay for her services.  That made sense.  Especially in the current economic atmosphere and for older people, the government needs to help pay our medical bills.”

My nephrologist is part of a practice which rotates their nutritionists. It’s a pretty good idea since I get different points of view about my renal diet from dietitians who each have my records at hand. Your renal diet is tweaked according to your latest labs, so having your records in front of them is important to you and your nutritionist.

Notice I was writing about a RD and Diana is a RDN. The only difference between the two is that Registered Dieticians need not also be Nutritionists, but an RDN is both a Dietician and a Nutritionist.

Let’s take a look at Diana’s unique take on processed foods now.

Processed Food, Chronic Kidney Disease and Your Health

What foods come to mind when you hear the words “processed food”? Is it potato chips? Fast food? Margarine? Or maybe bread? Olive oil? Milk? Do you think artificial? Unhealthy? Safe? Convenient? Cheap?

If any of these words or foods came to mind, you are correct! Let’s clarify. Processed is a term that applies to a wide range of foods as by definition they are any food that has been altered from its natural state usually for either safety or convenience. Many foods need to be processed to make them suitable for eating, for example extracting oil from seeds and pasteurizing milk to make it safe to drink.

Processed foods can have many benefits like convenient and safe food storage as well as better retention of nutrient content. For example, flash frozen fruits and vegetables may have higher vitamin and mineral content than fresh or canned. They also provide more choice, less waste, less cost and can reduce food preparation and cooking time. Processed foods can be helpful for people who have difficulty cooking, like the elderly or disabled.

Over the past several years, many working in the nutrition industry have become very critical of processed foods, and their widespread use in our diet has been blamed for everything from obesity to cancer. However, other than fresh produce straight from the fields, you would have a hard time finding many unprocessed foods in your local grocery store. Most store-bought foods have been processed in some way including freezing, canning, baking, drying, irradiating and pasteurizing. Processed foods are here to stay, but making informed choices when grocery shopping will allow them to be part of a healthy, balanced diet.

The problem with some of today’s processed foods are the amounts of salt, sugar and fat that are often added to enhance taste, extend shelf life and retain moisture, texture, etc. Because we rely heavily on processed foods, we may be eating more salt, sugar and fat than we need. This is important for people with kidney disease who need to watch salt intake for blood pressure control. Kidney patients who also have diabetes need to limit sugar intake as well. Since both diabetes and kidney disease increase the risk of heart disease, fat intake is another concern.

So how do you select healthier processed foods?

In general, you want to choose products with less fat and sodium, more fiber and the least added sugar. The best way to do this is to read the Nutrition Facts Label and stick to eating one serving of packaged foods. Use the following guidelines when looking at different nutrients and ingredients on the nutrition labels to make better choices:

Trans Fats – Look for 0 grams. Trans fats are hidden in many fried and baked foods like biscuits, cookies, crackers as well as frozen foods. They increase levels of bad cholesterol (LDL) and decrease good cholesterol (HDL).  If you see shortening or partially hydrogenated oils in the ingredient list, it has trans fat. Remember…Trans fat? Put it back!

Saturated fat – For most people, intake of saturated fat should be around 13-18 grams per day.

Sodium – Sodium intake should be less than 2300 milligrams (mg) per day or 700-800 mg per meal. Look for “no salt added” canned items or items with preferably less than 200 mg per serving. Limit use of boxed side dishes with seasoning packets as well as high sodium condiments like soy sauce, barbeque sauce and bottled dressing and marinades.

Sugar – Sugars are a bit trickier. Instead of grams, check ingredient lists for sugars like corn sweetener and high fructose corn syrup, and words ending in -ose, like dextrose or maltose. If a sugar ingredient is one of the first three ingredients in the list or if there are more than 2-3 different types of sugars, it likely has a lot of added sugar.

Fiber – Look for at least 3 grams of fiber per serving for cereal, bread and crackers. Also, look for the word “whole” before grains, like whole wheat. If it says enriched, it’s likely had the fiber removed during processing.

By spending a few extra minutes of your shopping time taking a closer look at the groceries you are buying, you can limit less healthy additives and still enjoy all the benefits of processed foods!

While I agree with Diana now that she’s brought up processed foods, remember your labs will dictate your renal diet.

I almost forgot to tell you: in Honor of World Kidney Day. which was March 9th, SlowItDownCKD 2016 is now available in print on Amazon.com!!!!!

Until next week,

Keep living your life!

February is Black History Month

In honor of Black History Month, I thought I would write about Blacks who have contributed to the research and treatment of Chronic Kidney Disease. I’ll be highlighting a few people and then dealing with why CKD is treated differently for Blacks.

Ladies first: Dr. Bessie Young is a nephrologist… and more. This is from The University of Washington’s Department of Medicine at https://medicine.uw.edu/news/dr-bessie-young.

“Dr. Young is a professor of medicine in the Division of Nephrology and holds adjunct titles in the Departments of Epidemiology and Health Services. She received her MD in 1987 and her MPH in 2001, both from the University of Washington.

Her research focuses on racial disparities and genetic factors predicting outcomes of patients with kidney disease, education regarding access to transplantation and dialysis for minorities, and access to kidney disease care in rural areas.”

While I have great admiration for both Drs. Young and Kountz (see below), I feel a connection with Dr. Vanessa Grubbs. We corresponded a bit when she first began her blog, which is both personal and professional. We all know I’m not a doctor and have never claimed to be one, but I’m convinced I can feel what a nephrologist feels when I read her blog.  This is from The California Health Care Foundation’s website at http://www.chcf.org/authors/vanessa-grubbs?article=%7BF610E00F-9FE7-4E95-AEBB-5781EE7E0F66%7D:

“Dr. Grubbs is an assistant professor of medicine in the Division of Nephrology at the University of California, San Francisco, Zuckerberg San Francisco General Hospital, where she has maintained a clinical practice and clinical research program since 2009. Though most of her time is dedicated to research and patient care, her passion is creative nonfiction writing. She is working on her first book, and she blogs at thenephrologist.com.”

Her book, Hundreds of Interlaced Fingers: A Kidney Doctor’s Search for the Perfect Match will be available on Amazon.com this June. By the way, she donated a kidney to her husband when they were only dating.

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.”

It’s time for an explanation as to why I wrote “why CKD is treated differently for Blacks,” isn’t it?

This is from Jane E. Brody’s article Doctors sharpen message on kidney disease reprinted in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:

“There are four main risk factors for kidney disease:  diabetes, high blood pressure, age over 60 and a family history of the disease. Anyone with these risk factors should have a test of kidney function at least once a year, Vassalotti said.  (Me here: he was the National Kidney Foundation’s Chief Medical Officer at the time the article was written). Members of certain ethnic groups are also at higher than average risk: blacks, Hispanics, Pacific Islanders and Native Americans.”

This means physicians need to monitor blood pressure and diabetes more closely for blacks (as well as the other high risk groups).

Why, you ask.  This bit from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease will explain about the blood pressure.

“HPB can damage small blood vessels in the kidneys to the point that they cannot filter the waste from the blood as effectively as they should. Nephrologists may prescribe HBP medication to prevent your CKD from getting worse since these medications reduce the amount of protein in your urine.  Not too surprisingly, most CKD related deaths are caused by cardiovascular problems.”

As for diabetes, I turned to The Book of Blogs: Moderate Chronic Kidney Disease, Part 2, for this tidbit:

“According to Diabetes.co.uk at http://www.diabetes.co.uk/how-does-diabetes-affect-the-body.html, ‘The kidneys are another organ that is at particular risk of damage as a result of diabetes and the risk is again increased by poorly controlled diabetes, high blood pressure and cholesterol’”

In addition, there is a gene more prevalent in Blacks that can exacerbate their CKD. “This discovery provides direct evidence that African-Americans with established CKD and the APOL1 risk gene variant experience a faster decline in kidney function compared to their white counterparts, irrespective in most cases of what caused their kidney disease.” Afshin Parsa, M.D., a nephrologist at the University of Maryland School of Medicine in Baltimore and a CRIC Study investigator.

Dr. Parsa was referring to the study on APOL1 which was published in The New England Journal of Medicine.

The following is from The National Kidney Foundation’s Fact Sheet on Blacks and CKD at https://www.kidney.org/news/newsroom/factsheets/African-Americans-and-CKD.

• Blacks and African Americans suffer from kidney failure at a significantly higher rate than Caucasians – more than 3 times higher.
• African Americans constitute more than 35% of all patients in the U.S. receiving dialysis for kidney failure, but only represent 13.2% of the overall U.S. population.
• Diabetes is the leading cause of kidney failure in African Americans. African Americans are twice as likely to be diagnosed with diabetes as Caucasians. Approximately 4.9 million African Americans over 20 years of age are living with either diagnosed or undiagnosed diabetes.
• The most common type of diabetes in African Americans is type 2 diabetes. The risk factors for this type of diabetes include: family history, impaired glucose tolerance, diabetes during pregnancy, hyperinsulinemia and insulin resistance, obesity and physical inactivity. African Americans with diabetes are more likely to develop complications of diabetes and to have greater disability from these complications than Caucasians. African Americans are also more likely to develop serious complications such as heart disease and strokes.
• High blood pressure is the second leading cause of kidney failure among African Americans, and remains the leading cause of death due to its link with heart attacks and strokes.

Today’s blog was a bit longer than usual to bring you this important information. We celebrate Black History Month AND need to make our Black family members, friends, and co-workers aware of their heightened risk so they can help prevent their own CKD.

Until next week,

Keep living your life!

It’s Unfolding Now

Remember when I was lucky enough to catch the flu just after Christmas? (She wrote sarcastically.) When I went to the Immediate Care facility my doctor is associated with, the doctor there had my records and knew I’d had pleurisy at one time. But now, he ordered a chest x-ray to check for pneumonia. What he found instead was news to me… so, of course, I’m telling you about it.

To quote from the final result report of the X-ray: “There is unfolding of the thoracic aorta.” Huh? In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 there’s an explanation of thorax.

“What?  The what? Oh, the thorax. That’s ‘the part of the human body between the neck and the diaphragm, partially encased by the ribs and containing the heart and lungs; the chest’ according to The Free Dictionary at http://www.thefreedictionary.com/thorax.”

Thoracic is the adjective form of thorax; it describes the aorta in this case.

Do you remember what the aorta is? I sort of, kind of did, but figured I’d better make certain before I started writing about it. MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=2295 was helpful here.

“The aorta gives off branches that go to the head and neck, the arms, the major organs in the chest and abdomen, and the legs. It serves to supply them all with oxygenated blood. The aorta is the central conduit from the heart to the body.”

Now I get the connection between Chronic Kidney Disease and the aorta. Did you catch “oxygenated blood” in that definition? And what organs oxygenate the blood? Right. Your kidneys. This excerpt from SlowItDownCKD 2015 may help.

““The National Kidney and Urologic Diseases Information Clearinghouse …explains.

‘Healthy kidneys produce a hormone called erythropoietin, or EPO, which stimulates the bone marrow to produce the proper number of red blood cells needed to carry oxygen to vital organs.  Diseased kidneys, however, often don’t make enough EPO. As a result, the bone marrow makes fewer red blood cells.’”

With me so far? Now, what the heck is an unfolded aorta? I turned to the British site for radiologists, Radiopaedia.org, at https://radiopaedia.org/articles/unfolded-aorta for the definition. “The term unfolded aorta refers to the widened and ‘opened up’ appearance of the aortic arch on a frontal chest radiograph. It is one of the more common causes for apparent mediastinal widening and is seen with increasing age.

It occurs due to the discrepancy in the growth of the ascending aorta with age, where the length of the ascending aorta increases out of proportion with diameter, causing the plane of the arch to swivel.”

I purposely left the click through definitions in so you read them for yourself. You know the drill: click on the link while holding down your control key. For those of you who are reading the print version of the blog, just add the definition of aorta to the common terms we know: arch and ascending.

Mediastinal, according to the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/mediastinum is the adjective (describing) form of mediastinum or “the space in the chest between the pleural sacs of the lungs that contains all the tissues and organs of the chest except the lungs and pleurae; also:  this space with its contents.”

Hang on there, folks, just one more definition. I searched for a new site that wouldn’t offer a terribly technical definition of pleura (or pleurae) and found verywell at https://www.verywell.com/pleura-lungs-definition-conditions-2249162.

“The pleura refers to the 2 membranes that cover the lungs and line the chest cavity. The purpose of the pleura is to cushion the lungs during respiration.

The pleural cavity is the space between these 2 membranes and contains pleural fluid.”

Side note: I definitely feel like I’m back teaching a college class again.

Okay, so now we have a bunch of definitions, we’ve put them together as best we can and where does it bring us? Are you ready for this? Nowhere. An unfolding of the thoracic aorta is nothing more than a function of age.

However, with CKD, it’s somewhere. As was explained in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, “Hemoglobin is the protein in red blood cells that carries oxygen from the lungs to the rest of the body.”  We’re already not getting enough oxygen due to our poor, declining in function kidneys.

Am I concerned about the unfolding thoracic aorta? No, not at all. It happens with age; I don’t think I can do anything about that. But, the CKD that also lowers our oxygen production? Oh yes, I can – do – and will do something about that by protecting my kidneys as best I can and keeping the remaining kidney function I have.

Kidneys.com, quoted in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, did a nice job of laying out a plan for me to do just that.

“Along with taking your prescribed blood pressure medications, lifestyle changes such as losing weight, exercising, meditating, eating less sodium,  drinking  less  alcohol  and  quitting  smoking  can  help  lower  blood pressure. Better blood pressure control helps preserve kidney function.”

I added using my sleep apnea machine and aiming for eight hours of sleep a night. I also stick to my renal diet – which limits protein, phosphorous, potassium, and sodium (as mentioned by kidney.com) – for the most part and keeping my kidneys hydrated by drinking at least 64 ounces of fluid a day.

Is it hard? I don’t know any more. It’s been nine years. They’re simply habits I’ve developed to live as long as I can and, sometimes, even raise the function of my kidneys.

When my New York daughter was with us over the holidays, I realized how differently we eat than other people do. My husband has chosen to pretty much eat the way I do. So she actually had to go down to the market to pick up the foods that people ordinarily eat.  It would have been funny if I hadn’t been sick. I would have gone with her and laughed each time I answered, “No,” when she asked, “Do you eat this?”

Until next week,

Keep living your life!

What Are You Doing for Others?

Today is Martin Luther King’s birthday. Today, more than ever, we need to heed his message. Whether you apply it to today’s bizarre political scene, your local community, your family, your co-workers doesn’t matter. What matters is the operant word: doing.

That picture and those words got me to thinking.  What AM I doing for others? And what still needs to be done?

My commitment is to spread awareness of Chronic Kidney Disease (CKD). As a patient myself, I know how important this is. As you know, CKD is a costly, lethal disease if not caught early and treated… and it’s not just older folks – like me – who are at risk. One out of ten people worldwide has CKD, yet an overwhelming number of them are unaware they have it.

We also know the disease can be treated, just not the way you’d usually expect a disease to be treated. A diet with restrictions on protein, potassium, phosphorous and sodium is one aspect of that treatment. Exercise, adequate sleep, and avoiding stress are some of the other aspects. Some patients – like me – may have to take medication for their high blood pressure since that also affects kidney function. Imagine preventing a death with lifestyle changes. Now image saving the lives of all those who don’t know they have CKD by making them aware this disease exists. Powerful, isn’t it?

We’re all aware by now that the basic method of diagnosing CKD is via routine blood and urine tests. Yet, many people do not undergo these tests during doctor or clinic visits, so don’t know they have Chronic Kidney Disease, much less start treating it. That’s where I come in; I tell people what can be done. I tell people how they can be diagnosed and treated, if necessary.

I was a private person before this CKD diagnosis so many years ago. Now, in addition to a Facebook page, LinkedIn, and twitter accounts as SlowItDownCKD, I make use of an Instagram account where I post an eye catching picture daily with the hashtag #SlowItDownCKD. This brings people to my weekly blog about CKD (the one you’re reading now) and the four books I wrote about it: What Is It and How Did I Get It? Early Stage Chronic Kidney Disease (which explains CKD) and the others – The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1; The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2; and SlowItDownCKD 2015 – which are the blogs in print for those who don’t have a computer or are not computer savvy.

Healthline is a well-respected, informative site for medical information. This past year this blog, SlowItDownCKD, was a winner in their list of The Six Best Kidney Disease Blogs. That brought the hits on my page up by the hundreds. That means hundreds more people are now aware of Chronic Kidney Disease, how it is diagnosed, how it is treated, and how to live with it.

But not everything is working as I’d hoped it would. Unfortunately, I am still not having success in having Public Service Announcements placed on television or radio. Nor have I been able to interest most general magazines or newspapers in bringing the disease to the public’s awareness.

It hasn’t totally been a wipeout there, though. Michael Garcia did interview me on The Edge Podcast and both Nutrition Action Healthletter, Center for Science in the Public Interest (the nation’s largest-circulation nutrition newsletter) and New York State United Teachers (membership 600,000) ‘It’s What We Do’ profiled my work spreading CKD Awareness. Profiling my work, interviewing me, mentioning the blog all bring awareness of Chronic Kidney Disease to the public. Awareness leads to testing. Testing leads to diagnosing. Diagnosing leads to treatment. Treatment leads to saving lives. This is why I do what I can to spread awareness of Chronic Kidney Disease.

What about you? Can you speak about CKD with your family? Your friends? Your co-workers? Your brothers and sisters in whichever religion you follow? What about your neighbors? I was surprised and delighted at the number of non CKD friends and neighbors who follow the blog. When I asked why they did, they responded, “I have a friend….” We may all have a friend who may have CKD, whether that friend has told us yet or not.

There are more formal methods of spreading this awareness if that interests you. The National Kidney Foundation has an Advocacy Network.

“A NKF Advocate is someone who has been affected by kidney disease, donation or transplant and who wants to empower and educate others. These include people with kidney disease, dialysis patients, transplant recipients, living donors, donor family members, caregivers, friends and family members.

Advocacy plays an integral role in our mission. You can make a significant difference in the lives of kidney patients by representing the National Kidney Foundation. We give you the tools you need to make your voice heard.”

You can read more about this program at https://www.kidney.org/node/17759 or you can call 1.800.622.9010 for more information.

The American Kidney Fund also has an advocacy program, but it’s a bit different.

“There is strength in numbers. More than 5,100 passionate patients, friends, loved ones and kidney care professionals in our Advocacy Network are making a huge difference on Capitol Hill and in their own communities. Together, we are fighting for policies that improve care for patients, protect patients’ access to health insurance and increase funding for kidney research. As advocates, we play a key role in educating elected officials and our communities about the impact of kidney disease.”

You can register for this network online at http://www.kidneyfund.org/advocacy/advocate-for-kidney-patients/advocacy-network/

Obviously, I’m serious about doing that which will spread awareness of CKD. You can take a gander at my website, www.gail-raegarwood.com, to see if that sparks any ideas for you as to how you can start doing something about spreading awareness of CKD, too. I urge you to do whatever you can, wherever you can, and whenever you can.

Until next week,

Keep living your life!

 

Starting the New Year with a Miracle

Happy New Year and welcome to 2017.  We did our usual stay in, watch movies, and toast with non-alcoholic champagne (I know that’s contradictory.) at midnight.  With our New York daughter here, it was even more meaningful.

A new year brings to mind new beginnings… and that leads me to Part 3 of the miracle series, as promised. I am so, so serious about this and hope you decide to take on for yourself causing a miracle in CKD by sharing information.

I was thinking about social media the other day. Where are the public service announcements about Chronic Kidney Disease?  I am still – nine years after my diagnose – knocking on seemingly closed doors to encourage Public Service Announcements everywhere. While the public doesn’t seem as involved with network television or radio as they were when I was younger, we now have Twitter, Facebook, Instagram, LinkedIn, and Tumblr to name just a few ways we can share.

I use a both a Facebook page and a Twitter account to post one fact about or information pertinent to those with CKD daily. Join me at SlowItDownCKD on Facebook and @SlowItDownCKD on Twitter. I also monitored Libre’s Tweet Chat with Gail Rae 1/10/12. I knew nothing about Twitter at the time, but it was a way to share the information I had. You may not want to do this, but feel free to ‘steal’ the information posted and share it with others.

There are also Podcasts, Internet Radio Shows, YouTubes, etc. to share what the public needs to know about CKD. A YouTube can be viewed by one person who posts it on Facebook and go viral. Don’t bother looking at mine. They’re pretty painful. I’ll look into this again at a later date.

On the other hand, these are some of the social media venues that interviewed me: The Edge

Podcast 5/9/16, Online with Andrea 3/23/15 & 3/07/12, What Is It? How Did I Get It? 2/17/12, and Improve Your Kidney Health with Dr. Rich Snyder, DO 11/21/11. I never knew these venues existed before I started working towards the miracle I wanted to cause.

Lo and behold, my sharing brought others who wanted to know about CKD, so I was profiled by Nutrition Action Healthletter, Center for Science in the Public Interest 9/16, New York State United Teachers ‘It’s What We Do’  8/9/16, and Wall Street Journal ‘Health Matters’  1/13/14. Remember that Clairol commercial in last week’s blog?

Let’s say you agree that sharing can cause a miracle in Chronic Kidney Disease and want to join in living a life causing this miracle. The first thing you’d want to do is learn about CKD. The American Kidney Fund and the National Kidney Foundation both have a wealth of information written for the lay person, not the medical community. By the way, the National Kidney Foundation also has information about CKD globally. Maybe you’d rather join in World Kidney Day gatherings and distribute materials. Then keep an eye on World Kidney Day’s Twitter account for locations around the world.

As you can see, I’ve been creating this miracle is by writing for these organizations and more kidney specific ones, as well as guest blogging for various groups. You may not choose to do that… but you can speak at your religious group meetings, your sports league, your weekly card game, or whatever other group you’re comfortable with.

A miracle doesn’t have to be profound. You can help create this one. All you need is a little education about CKD and the willingness to introduce the subject where you haven’t before.

I live my life expecting miracles and I find they happen.  This miracle that I’m causing – and is happening – has been (and is) created by sharing, sharing, sharing. The more than 200 million people who have Chronic Kidney Disease need this information, to say nothing of those who have yet to be diagnosed.

There aren’t that many organs to go around for those who didn’t know they had CKD and progressed to End Stage Renal Disease.  We know that transplantation is a treatment, not a cure, and one that doesn’t always last forever. We also know that kidneys from living donors usually last longer than those from cadaver donors. Share that, too.

We have our no cost, no pain, no tools needed miracle right on our lips… or at our fingertips. Start sharing, keep sharing, urge others to share, and help to prevent or slow down the progression in the decline of kidneys worldwide. Sharing is causing a miracle in CKD. Both deaths and hospitalizations for this disease have declined since 2008. If that isn’t a miracle, I don’t know what is. I keep saying I live my life expecting miracles; this is one of them.

I was a private person before this disease. Now, in addition to the Facebook page and twitter accounts, I make use of an Instagram account (SlowItDownCKD) where I post an eye catching picture daily with the hash tag #SlowItDownCKD. This brings people to my weekly blog about CKD – as does my Instagram account as Gail Rae-Garwood – and the four books I wrote about it: one explaining it and the others the blogs in print – rather than electronic form for those who don’t have a computer or are not computer savvy. Time consuming? Oh yes, but if I expect to live a life of miracles, I need to contribute that time to share what I can about the disease and urge others to do the same.

I am urging you to realize you are the others I am asking to help cause a miracle in Chronic Kidney Disease. As the Rabbinic sage Hillel the Elder said, “If I am not for myself, who will be for me? If I am only for myself, what am I? If not now, when?” Now. You. Me. Others. CKD.

Until next week,

Keep living your life!

Miracles Redux

Welcome to the last blog of 2016. I find it hard to believe another year has passed, although I do acknowledge that I’m a bit slower and more content to stay in my office to write rather than run around town. It’s a bit harder to maintain my body, although my mind is doing fine… as long as I don’t have to remember too much at once, that is. Well, my knees may have something to say, but I try to keep them happy with daily exercise and the braces.

I sincerely hope you enjoyed a joyous Christmas if you celebrate. And that you continue to enjoy Chanukah and Kwanzaa (which starts today) if you celebrate. We’ll be leaving for the Trans-Siberian Orchestra concert as soon as I finish the blog… a gift from us to us and one of the kids for Christmas. On Wednesday, we’ll have our Annual Chanukah Gathering. Our New York daughter will be with us since her Chanukah gift is a plane ticket. Being a two religion family, we celebrate both Chanukah and Christmas.

Before I get to more about creating a miracle, I am proud to announce that Healthline, a trusted health information site,  has named SlowItDownCKD one of The Best Kidney Disease Blogs of 2016. Talk about being surprised… and honored. Sort of a nice Christmas present, don’t you think? I suppose I can consider the publication of my novel, Portal in Time, my Chanukah present. I didn’t do too shabbily this year.

You know, it’s never too late to give either the novel or one of my Chronic Kidney Disease books as a present. Don’t forget you deserve presents, too.

Okay, on to more about miracles – or Part 2 – as I promised last week.

If CKD were common knowledge, if those in high risk categories were aware of it, we might have a chance of preventing the disease in those who don’t have it yet and/or slowing down the progression of the decline in kidney function of those who have been already diagnosed.

Exactly how can we do that? On the most basic level, there’s the spoken word. It’s not just the medical community that can talk about the disease. I can as a patient. You can, too, because you know me and I’ve told you about the disease (and/or you suffer from CKD yourself).  This is most effective in areas of the world that do not have access to – or money for – doctors and treatment.  This is where we can prevent more and more of the disease by preventing more and more hypertension and diabetes.

If I tell you what I know about curtailing sodium intake in high blood pressure and you tell me what you know about smoking as it contributes to hypertension, we’ve just shared two important aspects in the prevention of high blood pressure. If I tell you what I know about sugar in diabetes and you tell me what you know about carbohydrates and diabetes, we’ve just shared two important aspects in the prevention of diabetes. Then my husband starts sharing what he knows… and your third cousin once removed shares with her East Indian neighbor what her nephrologist told her… and your boss’s secretary shares what his boyfriend learned at his CKD awareness meeting, you’ve got a lot more people aware of what needs to be done about CKD. Sometimes causing a miracle is played out by sharing with people. Think of the miracle this kind of communication on a daily basis can cause.

The people you speak to will share with those they know, those they know will share with others they know until many, many more people become aware of CKD – just as that long ago Clairol hair coloring ad demonstrated how telling someone who tells someone can go on ad infinitum. Simplistic? Yes, but it works…and that’s part of living the life of causing a miracle in CKD.

Then there’s the printed word. If people are aware of CKD books and newspapers, business and educational publications can alert their populations that the disease exists and is lethal, but may be prevented and/or slowed down. Most businesses have wellness components. What perfect vehicles to transform the world’s awareness of CKD.

For example: my four Chronic Kidney Disease books are sold in 106 countries. I have 107,000 readers. This in itself is a miracle, not just for me but for everyone who is in some way connected to the disease. It is not uncommon for one community member to buy the book, then share it with everyone else in their social circle. If there’s a library, the books can be ordered and then shared for free.

These are some of the pieces I’ve written: American Kidney Fund   “Slowing Down CKD –  It Can Be Done”  7/14/16, Dear Annie 10/14, KidneySteps  9/11/13  &  7/4/12, National Kidney Foundation 6/6/13, It Is What It Is 3/9/12, Kevinmd.com 1/1/12, Working with Chronic Illness 1/11/10, KidneyTimes 1/11/10. Bragging? No, just demonstrating it can be done… but I had to cause it to happen by knocking on doors.

I also share my information via this blog. A doctor in a remote village in India prints and translates it to share with whichever patient has the bus fare to make it to the clinic. That patient brings the translation back to his family, friends, neighbors, and whoever else he thinks may be interested. This nephrologist’s view is the same as mine: We both need to live a life causing a miracle in Chronic Kidney Disease Awareness by sharing information. People who may not have known Chronic Kidney Disease exists now know via this sharing. Others who have undergone the simple blood and urine tests to diagnose the illness can share that the tests are not painful, other than the initial pinch of the needle for the blood draw. You would be surprised how many people, even in the high risk groups, don’t take the tests because they fear there will be pain involved. No sharing, no awareness. No awareness, no diagnose. No diagnose, no slowing down the disease.

Here are some of the blog and book mentions that have helped in my sharing of the information: Federal Register 9/25/13, The Neuropathy Doctor’s News 9/23/13, The NephCure Foundation 8/21/11, World’s Leading Expert.com 9/11/12, Glendale Community College Gaucho Gazette 8/22/11. These came about without my intervention. So what you share gets shared by others….

I’ve got some more thoughts, but we’ll have to leave them for Part 3 in the New Year. This blog is getting too long and my family is waiting for me.  Happy New Year to each and every one of you. Please be safe if you’re going out to celebrate.

Until next week and the New Year,

Keep living your life!

 

It’s a Miracle!

It’s that time of year again… the time to believe in miracles. There’s the miracle of Mary’s virgin birth at Christmas. And there’s the miracle of the Chanukah oil burning for eight nights instead of the one it was meant to. That got me to thinking about miracles and so, we have a different kind of several part blog beginning today. Consider it my gift to you this holiday season.

Miracles happen every day, too. We just need to take action to make them happen… and that’s what I’d like to see us do with Chronic Kidney Disease by sharing the available information.  This particular miracle is helping to alleviate the fear of needing dialysis and/or transplantation. This particular miracle is helping patients help themselves and each other. This particular miracle is helping doctors appreciate involved patients.

Yet, causing this miracle by sharing information is overlooked again and again. Chronic Kidney Disease, or CKD, is easily diagnosed by simple blood tests and urine tests (as we know), but who’s going to take them if they have no idea the disease exists, is widespread, and may be lethal? By sharing information, those at high risk will be tested. Those already in the throes of CKD can be monitored and treated when necessary. While CKD is not curable, we know it is possible to slow down the progression of the decline in your kidney function.

According to the National Institutes of Health at http://www.ncbi.nlm.gov/pmc/articles/PMC4112688,

“2014: Worldwide, an estimated 200 million people have chronic kidney disease (CKD).”

Before I was diagnosed, I had never heard of this disease… and apparently I’d had it for quite some time.  Why weren’t people sharing information about this?  Couldn’t that have prevented my developing it? At the time of my diagnose nine years ago, I meant doctors.  I don’t anymore. Nor do I leave causing a miracle by sharing to others.

This is my life. I have had Chronic Kidney Disease for nine years. As a college instructor who taught Research Writing at the time of my diagnose, I researched, researched, and researched again, but the only person I was sharing my research with was the nephrologist who treated me and monitored my condition. I may have expected a miracle there, but I didn’t get one. Why?

I got to thinking about that and realized he already knew what I told him. That’s when it struck me that if I expected a miracle with CKD, I would have to start sharing this information with the people who need it: the ones who didn’t know, the ones who had just been diagnosed and were terrified, and the families of those with CKD who didn’t know they also might be at risk. I went so far as to bring CKD education to the Native American Communities in Arizona since Native Americans are at high risk. I had the information and had experts willing to come to the communities to share that information.

We all know this is a costly, lethal disease if not caught early and treated… and that it’s not just the elderly who are at risk. One out of ten people worldwide has CKD, yet an overwhelming number of them are unaware they have it. We know CKD can be treated, just not the way those who don’t have it might expect. A diet with restrictions on protein, potassium, phosphorous and sodium may be one aspect of that treatment. Exercise, adequate sleep, and avoiding stress are some of the other aspects. Some patients – like me – may have to take medication for their high blood pressure since that also affects kidney function. Imagine preventing a death with lifestyle changes. Now imagine EXPECTING the miracle of preventing that death by sharing this information. Powerful, isn’t it?

We know the basic method of diagnosing CKD is via routine blood and urine tests. Yet, many people do not undergo these tests during doctor or clinic visits, so don’t know they have Chronic Kidney Disease, much less start treating it.

This is where the miracle I expected in my life began for me. I started speaking with every doctor of any kind that I knew or that my doctors knew and asked them to share the information. They were already experiencing time constraints, but suggested I write a fact sheet and leave it in their waiting rooms since they agreed there’s no reason to wait until a person is in kidney failure and needs dialysis or a transplant to continue living before diagnosing and dealing with the illness.

My passion about producing this miracle multiplied threefold from that point on. So much so that I went one better and wrote a book with the facts. I was convinced we would be able to cause a miracle by sharing information about this disease. My goal was clear: have everyone routinely tested.

Dr. Robert  Provenzano, a leading nephrologist in the United States,  succinctly summed up the problem worldwide.

“Chronic Kidney Disease is an epidemic in the world…. As other countries become Westernized, we find the incidence of Chronic Kidney Disease and end-stage renal failure increases. We see this in India, and in China. We see this everywhere. …”

We repeatedly see diabetes and hypertension cited as the two major causes of CKD. Does your neighbor know this? How about the fellow at the gas station? Ask them what Chronic Kidney Disease is. More often than not, you’ll receive a blank look – one we can’t afford if you keep the statistic at the beginning of this paper in mind. We can cause a miracle to change this.

Sharing can be the cause of that miracle… but that’s not something we can leave to the other guy. We each ARE the other guy. More on this next week.

For now, Merry Christmas, Happy Chanukah, Happy Kwanzaa (somehow implicit in this holiday is the miracle of bringing people together), and every other holiday I’ve inadvertently missed or don’t know about.

I just got word that Portal in Time – my first novel – is available on Amazon.com. Consider that as a holiday gift for those friends not interested in CKD. Of course, I just happen to have four CKD books on Amazon.com for those who might be interested in CKD. Be part of a miracle.

Until next week,

Keep living your life!

Medical Individuals

We all know I write about Chronic Kidney Disease, or CKD, but just what is that? When I wrote What Is It and How Did I Get It? Early Stage Chronic Kidney Disease six years ago, I defined CKD as “Damage to the kidneys for more than three months, which cannot be reversed but may be slowed.” Although I’m not so sure about that “cannot be reversed” any more, this is simple, right?

Well, not exactly. Over the years, many readers have pointed out that they have another form of kidney disease. According to University Kidney Research Organization (UKRO) @ http://ukrocharity.org/kidney-disease/different-types-of-kidney-diseases/, these are all considered kidney disease:

• Alport Syndrome
• Diabetic Nephropathy
• Fabry Disease
• Focal Segmental Glomerulosclerosis
• Glomerulonephritis
• IgA Nephropathy (Berger’s Disease)
• Kidney Stones
• Minimal Change Disease
• Nephrotic Syndrome
• Polycystic Kidney Disease or PKD

Wait a minute. Chronic means of long duration. Then with the exception (hopefully) of kidney stones, these diseases can all be classified as CKD… but are they when it comes to treatment?

Dr. Joel Topf is a nephrologist who writes a blog of his own (Precious Bodily Fluids @pbfluids.com) and is a member of the eAJKD Advisory Board at American Journal of Kidney Disease. He must make great use of his time because he has helped develop teaching games for nephrology students and has written medical works. (Yeah, I’m impressed with him, too.)

He’s also a Twitter friend. He contacted me the other day about an article in the Clinical Journal of the American Society of Nephrology entitled “The CKD Classification System in the Precision Medicine Era,” which was written by Yoshio N. Hall and Jonathan Himmelfarb. You can read it for yourself on their site, but you’ll need to join it and get yourself a user name and password. I didn’t. Joel sent me the copy I needed.

My first reaction to his request was, “Sure!” Then I read the article and wondered if I could handle all the medicalese in it. Several readings later, I see why he asked me to write about it.

I say I have CKD stage 3B. You understand what I mean. So does my nephrologist. That’s due to the KDOQI. As I explained in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, this is The National Kidney Foundation Kidney Disease Outcomes Quality Initiative which was not put into place until 1997 and then updated only five years later in 2002. It introduced stages and put CKD on the world medical map. By the way, the 2012 revised guidelines helped raised awareness of CKD according to the CJASN article: “…from 4.7% to 9.2% among persons with CKD stages 3 and 4 in the United States ….”

But something is missing. How can my stage 3 CKD be the same for someone who has, say, Nephrotic Syndrome? We may have the same GFR, but are our symptoms the same? Is the progression of our illnesses the same? What about our treatment? Our other test results?

Whoops! A certain someone looking over my shoulder as I type reminded me I need to define GFR. I especially like Medline Plus’s definition that I used in SlowItDownCKD 2015:

“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.”

I know, I know, I didn’t explain what “the Precision Medicine Era” is, either. According to the article, “The underlying concept behind the Precision Medicine Initiative is that disease prevention and treatment strategies must take individual variability into account.” Actually, President Obama first used the term in his State of the Union Address last year.

Alrighty now, back to why CKD staging is not necessarily precision medicine. It seems to center on one phrase – individual variability. I was diagnosed at age 60. I’m now almost 70. Where is the age adjustment in my treatment plan? Is there one? What about when I’m 80? 90? We know the body reacts differently to medications as we age. Is my nephrologist taking this into account? Is yours? I’m taking liberties with the definition of individual here; I don’t think the authors meant within the individual, but rather amongst individuals.

I check my husband’s blood test results for his GFR. FOR HIS AGE, he does not have CKD. But here’s another point I’ve been ranting about that’s brought up in this article. Many elders (Oh my! We’re in that category already.) are not being told if they have stage 1 or stage 2 CKD because their doctors age adjust and so don’t consider the results CKD. We’re getting a little esoteric here. Is CKD really CKD if you’ve age adjusted your GFR readings?

My brain is starting to hurt and I haven’t even written about the different diseases yet, although I did allude to them earlier. What impressed me most in this article is this (in discussing four different hypothetical patients): “Each would be classified as having stage 3 CKD with approximately the same eGFR, but it is patently obvious that virtually every aspect of clinical decision making … would greatly differ in caring for these four individuals.”

I have to agree in my layman way. I’m not a doctor, but I know that if you have Polycystic Kidney Disease and I don’t, although our GFR is the same, I cannot receive the same treatment you do and you cannot receive the same treatment I do. Yes, they’re both kidney diseases and both chronic, but they are not the same disease despite our having the same GFR.

There is no one size fits all here. Nor does there yet seem to be precision. My CKD at 70 is not the same as it was at 60. If I had diabetes, my CKD treatment would be different, too.  I do have hypertension and that has already changed my CKD treatment.

This got me to thinking. How would every nephrologist find the time for this individualized treatment for each CKD patient? And what other tests will each patient need to determine treatment based on his/her UNIQUE form of CKD?

Thanks for the suggestion, Dr. Topf. This was worth writing about.

Until next week,

Keep living your life!

 

TED Doesn’t Talk to Me; But YouTube Does

After last week’s accolades for the blog about apps for kidney disease, I thought I would keep on the electronic trail and jump right over to one of the big boys: TED Talks. I was both excited and a bit apprehensive since this is new territory for me. I have heard some of my children talk about them, but never explored these talks for myself.

What new information could I learn here? Would it be easier or harder to understand? And just what were T.E.D. Talks anyway?  Doing what I like to do best, I jumped in for a bit of research.

This is directly from the TED website at www.ted.com:

“TED is a nonpartisan nonprofit devoted to spreading ideas, usually in the form of short, powerful talks. TED began in 1984 as a conference where Technology, Entertainment and Design converged, and today covers almost all topics — from science to business to global issues — in more than 110 languages. Meanwhile, independently run TEDx events help share ideas in communities around the world.”

Considering what’s been going on with our insane politics this election, I thought I would check the meaning of nonpartisan just to make sure it had a meaning other than the one I’d been hearing bantered around. According to the Encarta Dictionary, it means “not belonging to, supporting, or biased in favor of a political party.” I wasn’t so sure that’s what it meant for TED, so I used the synonym function in Word; that made much more sense: impartial, unaligned, unbiased, unprejudiced, neutral, and so on.

Now that we know what TED is, let’s plunge right in and do some exploring. I searched Chronic Kidney Disease and got no hits. That’s all right; a synonym is renal disease. I’ll search that. All that came up was “Timothy Ihrig: What we can do to die well.” That’s not exactly what I was looking for.

I know, I’ll type in kidney failure. Hmmm, that didn’t work very well, either. I found two interesting talks, “Siddhartha Mukherjee: Soon we’ll cure diseases with a cell, not a pill” and “Anthony Atala: Printing a human kidney,” as well as two blogs that may have peripherally included CKD. No, these were not the talks about living with CKD that I’d hoped to find.

What other term could I search? I know, how about just-plain-kidney? I got three pages of hits which weren’t really hits at all if you were looking for living with Chronic Kidney Disease. While TED Talks cover a variety of interesting topics, I don’t think they’re CKD specific right now.  Maybe in the future…

I was a little crestfallen, but then I remembered that when I first decided to become a CKD Awareness Advocate and wrote What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I made a couple of YouTubes as marketing devices. They were terrible, but did include some helpful information. You can see this for yourself at https://www.youtube.com/watch?v=8VcVYhhrixg and https://www.youtube.com/watch?v=nRsUNxv7ajA.

When you’ve picked yourself up from the floor after getting your belly laughs at my expense (cringe), start exploring YouTube for CKD information by looking at the side bar on each of my woebegone entries into the world of YouTube.  The list of videos continues and goes on and on. Yay!

Of course, just as when you’re looking online – or choosing a book – or a blog to follow, you need to be careful to separate the wheat from the chaff. There are charlatans and scammers here, just as there are respected physicians and patients bravely sharing their stories.

But what is YouTube anyway? https://www.youtube.com/yt/about/tells us:

“Launched in May 2005, YouTube allows billions of people to discover, watch and share originally-created videos. YouTube provides a forum for people to connect, inform, and inspire others across the globe and acts as a distribution platform for original content creators and advertisers large and small.

YouTube is a Google company.”

You’ll also find some YouTubes I posted that show friends, family, even me dancing either the Blues or East Coast Swing. My point? Anyone can post anything provided it does not include:

Nudity or sexual content

Violent or graphic content

Hateful content

Spam, misleading metadata, and scams

Harmful or dangerous content

Copyright (Me, here, this refers to copyrighted material.)

Threats

You can read more about these community guidelines at https://www.youtube.com/yt/policyandsafety/communityguidelines.html.

I chose one or two posts to see the quality we can find here. (Very funny, no, this is not a case of I- wouldn’t-want-to-be-a-member-of-any-club- that-lets-me-in.) I noticed one of the physicians I’d had contact with as an advocate, Dr. Robert Provenzano, posted about the causes of CKD on 2/3/09 at https://www.youtube.com/watch?v=CjZCKBOoeQo which was highly informative… but getting close to seven years old.

I wanted something more recent and found it at https://www.youtube.com/watch?v=n1_srNUJkjE. This one by Danuta Trzebinska, MD, of US San Diego Health, deals with possible symptoms of CKD and was posted last year.

But then I found YouTube about a kidney cleanses which could be harmful to already damaged kidneys. Dr. Josh Axe at https://www.youtube.com/watch?v=3AqPE-j3Eq0 was not particularly targeting CKD patients, but as a new CKD patient, how could you know that? Some of the herbs he suggests are harmful to ALREADY COMPROMISED kidneys. You need to be careful about which videos are for those with CKD and which are for those without CKD. Of course, you’re checking everything you see with your nephrologist before you act on it. Right? You are, aren’t you? You’ve got to protect your kidneys, so please (Let’s make that pretty please.) do.

I’m wondering what other electronic helps I could explore. We’ve looked at apps, TED Talks, and YouTube. What other electronic aids do you know about that I don’t? I’ll be more than happy to explore them for myself which means I’ll be exploring them for you, too, since they’re going to end up being the next blog.

Today is Halloween. You know those treats? Why not treat yourself by not eating them? It’s hard, but it can be done.

Until next week,

Keep living your life!

And I Shall Dance the Night Away

Once upon a time, there was a little girl who loved to dance. Her parents were ballroom dancers: smooth, gliding, and delightful to watch. She wanted to do that, too, but there were no ballroom lessons for little girls at that time. She took a tap lesson or two, but the dance school was too far away for her to walk or for her driving shy mother to drive.

Then there was nothing until her junior high school offered dance lessons during the physical education period, all kinds of dance: square, cha-cha, rhumba, mambo, salsa, waltz, foxtrot. That’s when she realized her parents were her best dance teachers… and that dancing was in her blood. When she hit college, she went dancing with her buddies every chance she got. At that time, it was clubs.

Eventually she married, had a family, and only danced at weddings. It wasn’t such a happy time for her. But her children grew older and she found she could bring them to swing dances with her. She was happy again. One of these children grew up to initiate and teach blues dance lessons every week.  She was ecstatic.

That group is Sustainable Blues, Phoenix, and that child is Abby Wegerski. The little dancer grown up? It’s me, as if you hadn’t guess by now. And here’s comes the reason for the dancing introduction to this week’s blog.

We have Chronic Kidney Disease; we need to exercise at least half an hour a day for five days a week, daily if possible. This little tidbit from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease explains why:

“I researched, researched and researched again.  Each explanation of what exercise does for the body was more complicated than the last one I read.  Keeping it simple, basically, there’s a compound released by voluntary muscle contraction.  It tells the body to repair itself and grow stronger.”

I went into this just a bit further in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:

“With Chronic Kidney Disease, I need the daily exercise to keep my organs – all of them – strong, especially since CKD can eventually affect your other organs.  It’s our not-quite-filtered blood that feeds these organs, so we need to keep them healthy in as many ways as we can.”

Okay. Got it. Now the biggie: Is dancing the exercise we think it is?  I turned to WebMD at http://www.webmd.com/fitness-exercise/features/dancing-your-way-to-better-health#2 for the following:

(Exercise physiologist Catherine Cram, MS, of Comprehensive Fitness Consulting in Middleton, Wis. is the one being quoted.)

“Once someone gets to the point where they’re getting their heart rate up, they’re actually getting a terrific workout….Dance is a weight-bearing activity, which builds bones. It’s also wonderful for your upper body and strength, says Cram.”

Weight-bearing? I wasn’t so sure I could accept that so I turned to the National Institute of Arthritis and Musculoskeletal and Skin Diseases at http://www.niams.nih.gov/health_info/bone/Bone_Health/Exercise/default.asp for verification.

“The best exercise for your bones is the weight-bearing kind, which forces you to work against gravity. Some examples of weight-bearing exercises include weight training, walking, hiking, jogging, climbing stairs, tennis, and dancing.”

Look at that last word. Finally! My weight is working for me, instead of against me. Of course, I am in no way suggesting you gain weight so you can get more of the weight-bearing benefits of dancing. You know that, don’t you? Don’t you????

But that’s not the only benefit of dancing as a weight-bearing exercise. In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 I included part of a Los Angeles Times article about weight-bearing exercise. Potteiger is Jeffrey Potteiger, an exercise physiologist at Grand Valley State University in Grand Rapids, Mich., and a fellow of the American College of Sports Medicine.

“’Another big advantage … is improving glucose metabolism, which can reduce the risk of diabetes. Strength training boosts the number of proteins that take glucose out of the blood and transport it into the skeletal muscle, giving the muscles more energy and lowering overall blood-glucose levels.If you have uncontrolled glucose levels,’ Potteiger said, ‘that can lead to kidney damage, damage to the circulatory system and loss of eyesight.’”

I found the following list on the website of  Australia’s Victoria State Government Better Health Channel at https://www.betterhealth.vic.gov.au/health/healthyliving/dance-health-benefits after a bit of digging and liked how succinctly it demonstrated just how much we benefit ourselves when we dance.

 Health benefits of dancing

Dancing can be a way to stay fit for people of all ages, shapes and sizes. It has a wide range of physical and mental benefits including:

• improved condition of your heart and lungs
• increased muscular strength, endurance and motor fitness
• increased aerobic fitness
• improved muscle tone and strength
• weight management
• stronger bones and reduced risk of osteoporosis
• better coordination, agility and flexibility
• improved balance and spatial awareness
• increased physical confidence
• improved mental functioning
• improved general and psychological wellbeing
• greater self-confidence and self-esteem
• better social skills.

Wow – just wow. Who knew that the little girl who loved dancing would grow up to be the woman who used what she loved to help keep her Chronic Kidney Disease under control?

After all this good news – actually joyful to me – I unfortunately have to end this week’s blog on a cautionary note. It’s been brought to my attention that students are still being tricked into wasting their money by renting my Chronic Kidney Disease books for more than it would cost to buy them or asking their libraries to order copies to be borrowed for free . So, here’s the same warning I published earlier this year in SlowItDownCKD 2015.

“Students: do NOT rent any of these (e.g. my CKD books) for a semester.  The cost for that is much higher than buying the book.  Having been a college instructor, I know you sometimes have to buy your textbooks before the class begins and the instructor has the chance to tell you this.”

College has changed. It’s no longer two or three terms a year. Many college classes have staggered start dates, some weekly, some monthly. Many of the duped students used their financial aid money to pay these book rental companies. Be careful, students.

Until next week,

Keep living your life!

Not Your New Age Crystals

Sometimes, a reader will ask a question and I’ll research the answer for him/her, always explaining first that I’m not a doctor, don’t claim to be one, and (s)he will need to check whatever information I offer with his/her nephrologist before acting on it. There was just such a comment this week: “Just wondering if you have any advice on Gout and it’s effect on Kidney disease? Mary.” Advice? No. Research? Yes.

Let’s establish just what gout is first. This is how it’s defined in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease :

“gout: particularly painful form of inflammatory arthritis characterized by a build-up of urate crystals in the joints, causing pain and inflammation.”

Urate crystals? MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=11853 defines these as: “… salt derived from uric acid. When the body cannot metabolize uric acid properly, urates can build up in body tissues or crystallize within the joints.”

Okay, what’s uric acid then? Thanks to the Merriam Webster Online Dictionary at http://www.merriam-webster.com/dictionary/uric%20acid for the definition:

“URIC ACID: a white odorless and tasteless nearly insoluble acid C₅H₄N₄O₃ that is the chief nitrogenous waste present in the urine especially of lower vertebrates (as birds and reptiles), is present in small quantity in human urine, and occurs pathologically in renal calculi {A little help here: this means a concretion usually of mineral salts around organic material found especially in hollow organs or ducts} and the tophi of gout.”

Whoops, looks like I missed a definition here: tophi simply means the deposit itself.

You may be wondering what that has to do with Chronic Kidney Disease.  This paragraph from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 explains:

“Researching that brought me to an English article from Arthritis Research UK which cited an American study.  I’m going to reproduce only one paragraph of the article here because it brought home exactly what gout with Chronic Kidney Disease can do to your body.

‘The findings were presented at Kidney Week 2011 by researcher Dr Erdal Sarac. He concluded: ‘This study reveals a high prevalence of gout in patients with CKD. Male sex, advanced age, CAD, hypertension, and hyperlipidemia were significantly associated with gout among CKD patients.’”

You may need some more definitions to fully understand that paragraph, so I’m reproducing these from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

CAD: coronary artery disease

hyperlipidemia: high cholesterol

hypertension: high blood pressure

Gout sounds bad. I’ll bet you’re wondering how you can help avoid gout… especially if you have CKD. Let’s go back to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 for a moment.

“One disease, CKD, can be implicated for three others if you also have gout.  … I didn’t know that gout is also somehow in the mix of being medically compromised.  I have hyperlipidemia and hypertension and CKD.  True, I’m not an older male but should I become more vigilant about any hints of gout? ….

I would have to be careful about my food and beverage intake. Oh, wait, I’m already doing that by following the renal diet. In both, you are urged to cut back on alcohol and drink more water instead. Purines are a problem, too, but then again I am limited to five ounces of protein {A purine food source} per day. Hmmm, avoiding sugar-sweetened drinks may help. Say, with CKD, I have to watch my A1C {How the body handles glucose or sugar in a three month period} so that I don’t end up with diabetes.  That means I’m watching all my sugar intake already. I see fructose rich fruits can be a problem.  But I’m already restricted to only three servings of fruit a day!  Oh, here’s the biggie: lose weight.  Yep, been hearing that from my nephrologist for four (Me here: it’s more like nine years now.) years.  To sum up, by attending to my CKD on a daily basis, I’m also attempting to avoid or lessen the effects of gout.

This is getting very interesting.  I also take medication for both hypertension and hyperlipidemia.  Are they also helping me to avoid gout?  It seems to me that by treating one condition {Or two in my case}, I’m also treating my CKD and possibly preventing another.  It is all inter-related.”

By the way, based upon another reader’s question I mentioned cherries and gout in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“From my reading, I’ve also garnered the information that cherries can help with iron deficiencies, lower blood pressure, improve sleep, help with gout, and lower the risk of heart disease.

Or can they? Remember that too much potassium can actually cause an irregular heartbeat or possibly stop your heart.”

So now, we need to watch purines and potassium, too. Aha! Following the renal diet already is helping to avoid potassium. What about purines? According to WebMD at http://www.webmd.com/arthritis/tc/diet-and-gout-topic-overview:

“Purines (specific chemical compounds found in some foods) are broken down into uric acid. A diet rich in purines from certain sources can raise uric acid levels in the body, which sometimes leads to gout. Meat and seafood may increase your risk of gout. Dairy products may lower your risk.”

It seems to me a small list of high purine foods is appropriate here. Gout Education at http://gouteducation.org/patient/gout-treatment/diet/ offers just that. This also appears to be an extremely helpful site for those wanting to know more about gout.

“Because uric acid is formed from the breakdown of purines, high-purine foods can trigger attacks. It is strongly encouraged to avoid:

• Beer and grain liquors
• Red meat, lamb and pork
• Organ meats, such as liver, kidneys and sweetbreads
• Seafood, especially shellfish, like shrimp, lobster, mussels, anchovies and sardines”

Does this list sound familiar? It should if you’re following the renal diet. While not exactly the same, there’s quite a bit of overlap in the two diets.

Mary… and every other reader… I hope this was enough information for you to write a list of questions about CKD and gout to bring to your next nephrology appointment.

Until next week,

Keep living your life!

How Sweet She Is

For 12 years, sweet Ms. Bella has positioned herself just inside my office door as I wrote, researched, edited, and formatted. For 12 years, sweet Ms. Bella has greeted me as effusively when I returned from a trip to the mailbox as she did when I returned from a trip to Alaska. For 12 years, sweet Ms. Bella has shared one sided conversations with me about any and everything. For 12 years, sweet Ms. Bella has adored me as no other being on earth ever has.

I’ll miss that. Sweet Ms. Bella crossed what I’m told is called The Rainbow Bridge this morning. .. and it was my decision. I’ve known for months that she had lymphedema. First we tried this. Then we tried that. And finally there was nothing else left to try. I am oh-so-sad without my boon companion, but it was time. She knew it and I knew it. May your soul come back to me, my sweet Ms. Bella.

I’ve been sad for a while knowing that I would have to make this decision and wondering how I would know when she’d had enough. I watched…and watched…and watched, yet she made it perfectly clear when her legs wouldn’t hold her up anymore and her cancerous lymph nodes started to impede her eating. She is at rest now.

What have I done to my kidneys with all this sadness, I wondered. I don’t know via my lab reports because I was just tested last Thursday and didn’t know about sweet Ms. Bella’s cancer when my blood and urine were tested three months ago. So I did what I could to find out: I researched.

I found this on the National Kidney Foundation’s site at https://www.kidney.org/news/newsroom/nr/depression-kd:

“New York, NY (July 1, 2012) – People with kidney disease who have symptoms of depression may be on the fast track to dialysis, hospitalization or death, according to a new study published in the July issue of the American Journal of Kidney Diseases, the official journal of the National Kidney Foundation.”

But I’m not depressed; I’m sad.  Well, what’s the difference? I turned to my old buddy WebMD for some help here:

“….Also known as clinical depression, major depressive disorder, or unipolar depression, major depression is a medical condition that goes beyond life’s ordinary ups and downs. Almost 18.8 million American adults experience depression each year, and women are nearly twice as likely as men to develop major depression. People with depression cannot simply ‘pull themselves together’ and get better. Treatment with counseling, medication, or both is key to recovery.”

Since I’m one of those people who always manage to get myself back together – and fairly quickly – I’d say I’m not depressed. I do suggest you read more about depression at http://www.webmd.com/depression/is-it-depression-or-the-blues if this strikes a chord with you.

So let’s go back to sadness and the kidneys. This is from a 5/21/14 article on a site that’s new to me: Medical Daily at http://www.medicaldaily.com/can-powerful-emotions-kill-you-negative-health-effects-anger-stress-sadness-and-shock-283682:

” ‘It’s called heartbreak for a reason. When you’re experiencing deep grief or sadness, it takes a toll on your health, too. One study from St. George’s University of London found that it is actually possible to die of a broken heart — bereavement increases your risk of a heart attack or stroke by nearly double after a partner’s death, the researchers discovered. We often use the term a ‘broken heart’ to signify the pain of losing a loved one and our study shows that bereavement can have a direct effect on the health of the heart,’ Dr. Sunil Shah, senior lecturer in public health at St. George’s, said in a press release.”

There’s a firm connection between heart health and kidney health. This is from SlowItDownCKD 2015:

“We’re used to reading about anemia and high blood pressure as the connection between CKD and Heart Disease, but here are two other causes.

DaVita at http://www.davita.com/kidney-disease/overview/symptoms-and- diagnosis/ chronic-kidney-disease-and-your-heart/e/4730 once again jumps in to educate us:

‘High homocysteine levels: Damaged kidneys cannot remove extra homocysteine, an amino acid in the blood. High levels of homocysteine can lead to coronary artery disease, stroke and heart attack.

Calcium-phosphate levels: Damaged kidneys cannot keep calcium and phosphorus levels in balance. Often, there’s too much phosphorus and calcium in the blood. When this happens, there’s a risk for coronary artery disease.’”

Hmmm, just by having Chronic Kidney Disease, we run the risk of heart problems.  Now sadness – maybe ‘deep grief’ is a more apt description – may add to that risk. As much as I love sweet Ms. Bella and will miss her, I can’t honestly say this is true for me. It feels like there’s a big difference between deep grief and sadness.

Just to make certain the difference between depression and sadness is clear, I’m repeating this information from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“Make The Connection, a veterans’ support site tells us

‘Not everyone with depression has the same symptoms or feels the same way. One person might have difficulty sitting still, while another may find it hard to get out of bed each day. Other symptoms that may be signs of depression or may go along with being depressed include:

• Feeling sad or hopeless
• Losing interest in or not getting pleasure from most of your daily activities
• Gaining or losing weight
• Eating  more or less than usual almost every day
• Sleeping  too much or not enough almost every day
• Feeling restless and unable to sit still
• Feeling that moving takes great effort
• Feeling tired or as if you have no  energy almost every day
• Feeling unworthy or guilty nearly every day
• Having low self-esteem or feeling down on yourself
• Finding it hard to focus, remember things, or make decisions nearly every day
• Feeling anxious, worried, or nervous
• Drinking more alcohol or caffeine
• Taking more of a prescription or over-the-medication than as directed
• Smoking or using tobacco more often'”

It doesn’t look like my short term sadness is worsening my kidneys in any way, but if you’re not sure whether you need help with yours, or if it is truly depression, seek help. It can’t hurt to be careful.

I’m certain sweet Ms. Bella is not suffering anymore and that is already doing wonders for my peace of mind… and my sadness.

Until next week,

Keep living your life!

Feeling the Pressure

For those of you in the United States, here’s hoping you have a healthy, safe Labor Day.  I come from a Union family. So much so that my maternal grandfather was in and out of jail for attempting to unionize brass workers. That was quite a bit of pressure on my grandmother, who raised the four children and ran a restaurant.

I knew there was more than my personal history with the holiday so I poked around and found this from http://www.usatoday.com/story/news/nation/2016/09/04/labor-day-history/89826440/

“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 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.”

Now that’s pressure, but I want to write about another kind of pressure today: your blood pressure.

Being one of those people who is required to check their blood pressure at least once a day, I was surprised to learn that doctors didn’t realize the importance of maintaining moderate blood pressure until the 1950s. Yet, ancient Chinese, Greeks, and Egyptians knew about the pulse. I wonder what they thought that was.

The American Heart Association explains the difference between the blood pressure and the pulse, and offers a chart to exemplify. The column without the heading refers to ‘Heart Rate.’

	Blood Pressure
What is it?	The force the heart exerts against the walls of arteries as it pumps the blood out to the body	The number of times your heart beats per minute
What is the unit of measurement?	mm Hg (millimeters of mercury)	BPMs (beats per minute)
What do the numbers represent?	Includes two measurements: Systolic pressure (top number): The pressure as the heart beats and forces blood into the arteries Diastolic pressure (bottom number): The pressure as the heart relaxes between beats	Includes a single number representing the number of heart beats per minute
Sample reading	120/80 mm Hg	60 BPM

You can read more about this at http://www.heart.org/HEARTORG/Conditions/HighBloodPressure/AboutHighBloodPressure/Blood-Pressure-vs-Heart-Rate_UCM_301804_Article.jsp.

According to Withings, a French company that sells blood pressure monitoring equipment, at http://blog.withings.com/2014/05/21/the-history-of-blood-pressure/:

“The first study on blood circulation was published in 1628 by William Harvey – an English physician. He came to the conclusion that the heart acts as a pump. At that point it wasn’t clear that blood circulated, but after a little calculation he was pretty sure that blood is not ‘consumed’ by the organs. The physician then concluded that blood must be going though (sic) a cycle.”

Ah, but did his measurement include both numbers? In What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I satisfied my own curiosity as to why our blood pressure readings always have two numbers, one atop the other:

“The first number… called the systolic is the rate at which the heart contracts, while the second or diastolic … is when the heart is at rest between contractions.  These numbers measure the units of millimeters of mercury to which your heart has raised the mercy.”

Uh, raised the mercury of what? Well it’s not the sphygmomanometer as we now know it. By the way, this is the connection between blood pressure and Chronic Kidney Disease that I mentioned in SlowItDownCKD 2015:

“I wonder how frustrated Dr. Bright became when he first suspected that hypertension had a strong effect on the kidneys, but had no way to prove that theory since the first practical sphygmomanometer (Me here: That’s the device that measures your blood pressure.)  wasn’t yet available.”

Well, why is hypertension – high blood pressure – important in taking care of your kidneys anyway?  It’s the second leading cause of CKD. The Mayo Clinic succinctly explains why at http://www.mayoclinic.org/diseases-conditions/high-blood-pressure/in-depth/high-blood-pressure/art-20045868

“Your kidneys filter excess fluid and waste from your blood — a process that depends on healthy blood vessels. High blood pressure can injure both the blood vessels in and leading to your kidneys, causing several types of kidney disease (nephropathy). “

Well, how do you avoid it then? One way is to take the pressure off yourself. (As a writer, I’m thoroughly enjoying that this kind of pressure can affect the other kind – the blood pressure. As a CKD patient, I’m not.)

Pressure on yourself is usually considered stress. In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, there’s an explanation of what stress does to your body.

“…we respond the same way whether the stress is positive or negative…. First you feel the fight or flight syndrome which means you are releasing hormones.  The adrenal glands which secrete these hormones lay right on top of your kidneys. Your blood sugar raises, too, and there’s an increase in both heart rate and blood pressure.  Diabetes {High blood sugar} and hypertension {High blood pressure} both play a part in Chronic Kidney Disease. If you still haven’t resolved the stress, additional hormones are secreted for more energy.”

What else? This list from the American Kidney Fund was included in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:

• Eat a diet low in salt and fat
• Be physically active
• Keep a healthy weight
• Control your cholesterol
• Take medicines as directed
• Limit alcohol
• Avoid tobacco

 Why am I not surprised at how much this looks like the list for healthy kidneys?

I was just thinking: what better day to start working on this list than Labor Day?

Until next week,

Keep living your life!

 

 

The Nutrition Action Health Letter Article

I am now officially excited.  I’d been getting some comments about this article which I thought wasn’t being published until September. I wondered why. It was my mistake. The article was to appear in the September issue, which I didn’t realize is published before the month begins.

The Center for Science in the Public Interest’s September Nutrition Action Health Letter is out… and you can read it online, too. The URL is http://www.nutritionaction.com/wp-content/uploads/cover-Kidney-Check-How-to-Keep-Yours-Going-Strong.pdf. Many thanks to Bonnie Liebman for such a fine job of reporting and aiding in spreading Chronic Kidney Disease Awareness. It’s long, six pages, so what we have here are excerpts.

 

“I didn’t know that I had end-stage renal disease until I was admitted to the hospital in 2009,” says David White, who was then in his mid-40s. “A few days later, I stopped producing urine.”

Doctors told White that he had crashed. “It was scary,” he says. “I went from ‘Something may be wrong’ to ‘Oh my god am I going to die?’ to ‘I have to spend the rest of my life on dialysis.’”

And with four hours of dialysis three times a week, he never felt great.

“People call it the dialysis hangover,” says White, from Temple Hills, Maryland. “You’re so tired that you want to sleep all day after dialysis and most of the following day. And then you gear up for the next treatment.”

And White struggled with his one-quart-a-day limit on fluids. “When you drink too much, moving isn’t comfortable, laying down isn’t comfortable,” he says. “It’s hard to breathe.”

For Gail Rae-Garwood, the news about her kidneys came when she switched to a new doctor closer to her home in Glendale, Arizona.

“She decided that as a new patient, I should have all new tests,” says Rae-Garwood, now 69. “When the results came in, she got me an appointment with a nephrologist the next day. When you get an appointment with a specialist the next day, you know something is not right.”

Rae-Garwood had chronic kidney disease. “My GFR was down to 39, and apparently had been low for quite a while,” she says. (Your GFR, or glomerular filtration rate, is the rate at which your kidneys filter your blood.) “‘What is chronic kidney disease and how did I get it?’ I demanded,” recalls Rae-Garwood.

Every 30 minutes, your kidneys filter all the blood in your body. Without at least one, you need dialysis or a transplant. Yet most people have no idea how well their kidneys are working. “It’s very common for people to have no idea that they have early chronic kidney disease,” says Alex Chang, a nephrologist at Geisinger Health System in Danville, Pennsylvania.

A routine blood test sent to a major lab—like Quest or LabCorp—typically includes your GFR. If it doesn’t, your doctor can calculate it.

“A GFR is pretty routine for anyone who has blood work done,” says Chang. “But if you have very mild kidney disease, and especially if you’re older, a doctor might not mention it since kidney function tends to decline as you age.”

Doctors also look for kidney disease by testing your urine for a protein called albumin …. “That’s usually only done if you have high blood pressure or diabetes or some risk factor for kidney disease other than age,” says Chang.

Rae-Garwood’s previous doctor missed that memo. “I had been on medication for high blood pressure for decades,” she explains. “I wonder how much more of my kidney function I could have preserved if I’d known about it earlier.”

***

David White had kidney transplant in 2015. “It’s given me my life back,” he says. “No more dialysis.”

He takes anti-rejection drugs and steroids, and, like Rae-Garwood, he gets exercise and has to watch what he eats.

“I’ve changed my diet radically,” says Rae-Garwood. “I have to limit the three P’s—protein, potassium, and phosphorus. I’m restricted to 5 ounces of protein a day. We have no red meat in the house. Any product above 7 or 8 percent of a day’s worth of sodium I don’t buy.

“And you know what? It’s fine. It’s been nine years now, and I’ve been able to keep my GFR around 50.”

Both patients are now advocates for preventing kidney disease. “I’ve written four books and almost 400 weekly blogs, and I post a daily fact about chronic kidney disease on Facebook,” says Rae-Garwood. White chairs the the MidAtlantic Renal Coalition’s patient advisory committee, among other things among other things.

“Get tested,” urges Rae-Garwood. “Millions of people have chronic kidney disease and don’t even know it. All it takes is a blood and urine test.”

My hope is that as a result of this article, more libraries, medical schools, and nephrology practices will order copies of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, and SlowItDownCKD 2015. If you have a Kindle, Amazon has two wonderful low cost or free programs that may make it easier for you, your loved ones, and anyone you think could benefit from these books to read them.

This is how Amazon explains these programs:

“Kindle Unlimited is a subscription program for readers that allows them to read as many books as they want. The Kindle Owners’ Lending Library is a collection of books that Amazon Prime members who own a Kindle can choose one book from each month with no due dates.”

Barnes and Noble doesn’t have any such programs, but they do offer discount deals daily, which you can use to purchase any book.

I urge you to help spread awareness of Chronic Kidney Disease in any way you can. Here’s another quote from the article that may help you understand why:

“One out of ten adults have chronic kidney disease. Most don’t know it because early on, kidney disease has no symptoms. And because the risk rises as you age, roughly one out of two people aged 30 to 64 are likely to get the disease during their lives….”

Until next week,

Keep living your life!

CKD Treatment Interruptus

Recently, someone close to me experienced a major burglary.  After calling the police, he called me. That’s what my friends do and I’m thankful they do. I kept him on the phone while I threw on some clothes and sped over to his house. This is a strong, independent man who was shocked at the intimacy of the invasion of his home. When I got there, we walked from room to room, astonished at how much had been stolen.

That night, I couldn’t leave – not even to go home for my evening medications and supplements. That night, I couldn’t sleep while my buddy was in such turmoil. So we sat up staring at the empty space where the TV had been.  He’s not on the renal diet and all he had that I could eat was some chicken, no fruit, no vegetables. And I was too busy being with him to exercise. This was my good buddy of over 30 years standing.

The next morning, another friend came over to help with security devices and spend time with our mutual friend.  I got to go home, take my morning medications, and crawl into bed for ½ an hour. But then our mutual friend had to go to work, so I went back to my buddy’s house and spent the day helping him try to list what was missing, what to do about the insurance, how to handle going to work, etc. The word spread, and, suddenly, a third friend was coming to spend the night with him and another couple joined them to make dinner.  I could go home again.   

But I was exhausted. I ate stupidly: Chinese restaurant food with all that sodium. I even ate rice, and here I am on a low carbohydrate diet. I sat in the living room like a zombie while Bear waited on me hand and foot.

Even with all this help, my buddy needed to see me daily. I was his strength. So we ran around rummaging up some receipts he’d need for the insurance. But I could see he was feeling better. Our mutual friends were amazing, including those who couldn’t leave work to come so kept phoning and texting instead. A different someone else stayed with him overnight again.  Then he only needed to see me for a quick hug… and yet another someone else stayed with him overnight again. He didn’t really need me anymore, which is great because I started breaking down.

I have Chronic Kidney Disease. I need to sleep adequately – and with my BiPap. I need to follow the renal diet. I need to exercise. I need to rest.  I did very little of any of this during the trauma itself, and that’s alright. This is my long term buddy – as grown up and mature as he is – and he needed me. But what did I do to myself?

You guessed it. Right away, my blood pressure shot up and that’s a bad thing. Why? Let me tell you… or you can go to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, page 9.  

“Through my research, I began to understand what high blood pressure [HPB] has to do with renal disease.  HPB can damage small blood vessels in the kidneys to the point that they cannot filter the waste from the blood as effectively as they should. Nephrologists may prescribe HBP medication to prevent your CKD from getting worse since these medications reduce the amount of protein in your urine.  Not too surprisingly, most CKD related deaths are caused by cardiovascular problems.”

What about the stress?  What was that doing to my poor overworked kidneys?  I went to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 for the answer to that one:

“First you feel the fight or flight syndrome which means you are releasing hormones.  The adrenal glands which secrete these hormones lay right on top of your kidneys. Your blood sugar raises, too, and there’s an increase in both heart rate and blood pressure.  Diabetes {Blood sugar} and hypertension {Blood pressure} both play a part in Chronic Kidney Disease.”

That’s two strikes against me. I almost hesitate to think about exercise… or the lack of it for several consecutive days.  This is one of the points about treating prediabetes (which I have and so do so many of you) from the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/prediabetes/basics/treatment/con-20024420 which was included in SlowItDownCKD 2015:

“Losing excess pounds. If you’re overweight, losing just 5 to 10 percent of your body weight — only 10 to 20 pounds (4.5 to 9 kilograms) if you weigh 200 pounds (91 kilograms) — can reduce the risk of developing type 2 diabetes. To keep your weight in a healthy range, focus on permanent changes to your eating and exercise habits. Motivate yourself by remembering the benefits of losing weight, such as a healthier heart, more energy and improved self-esteem.”

And the renal diet? We mustn’t forget about the renal diet. In The Book of Blogs: Moderate Kidney Disease, Part 1 I quoted from http://www.yourkidneys.com/kidney-education/Treatments/Living-a-full-life-after-a-chronic-kidney-disease-diagnosis/3189 which is part of Yourkidneys.com from DaVita:

“Depending on what stage of Chronic Kidney Disease you’re in, your renal dietitian will adjust the amounts of protein, sodium, phosphorus and potassium in your diet. In addition, carbohydrates and fats may be controlled based on conditions such as diabetes and cardiovascular disease. The CKD non-dialysis diet includes calculated amounts of high quality protein. Damaged kidneys have a difficult time getting rid of protein waste products, so cutting back on non-essential protein will put less stress on your kidneys.”

Have I done more permanent damage to my kidneys? I’m hoping not since it was just a few days and I made the conscious decision to be with my buddy instead of tending to myself. Let’s consider this a cautionary tale instead.

Until next week,

Keep living your life!

The American Kidney Fund Blog

I was honored that The American Kidney Fund (www.kidneyfund.org) asked me to write a blog for them. This is that blog. Once it was published last Thursday, I started thinking. If you share the blog and ask those you shared with to share it, too, and they asked their friends to share it, too… image how many people would become aware of Chronic Kidney Disease. Will you do that?

Slowing Down CKD—It Can Be Done

When a new family doctor told me nine years ago that I had a problem with my kidneys—maybe chronic kidney disease (CKD)–my first reaction was to demand, “What is it and how did I get it?”

No doctor had ever mentioned CKD before.

I was diagnosed at stage 3; there are only 5 stages. I had to start working to slow it down immediately. I wanted to know how medication, diet, exercise and other lifestyle changes could help. I didn’t want to be told what to do without an explanation as to why… and when I couldn’t get an explanation that was acceptable to me, I started researching.

I read just about every book I could find concerning this problem. Surprisingly, very few books dealt with the early or moderate stages of the disease.  Yet these are the stages when we are most shocked, confused, and maybe even depressed—and the stages at which we have a workable chance of doing something to slow down the progression in the decline of our kidney function.

I’ve learned that 31 million people—14 percent of the population—have CKD, but most don’t know they have it. Many, like me, never experienced any noticeable symptoms. Many, like me, may have had high blood pressure (hypertension) for years before it was diagnosed. Yet, high blood pressure and diabetes are the two leading causes of CKD.

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

Another critical piece of slowing down CKD is medication. I was already taking meds to lower my blood pressure when I was first diagnosed with CKD. Two more prescriptions have been added to this in the last nine years: a diuretic that lowers my body’s absorption of salt to help prevent fluid from building up in my body (edema), and a drug that widens the blood vessels by relaxing them.

For a very short time, I was also taking a drug to control my pre-diabetes, but my doctor and I achieved the same effects by changing my diet even more. (Bye-bye, sugars and most carbs.) The funny thing is now my favorite food is salad with extra virgin olive oil and balsamic vinegar. I never thought that would happen: I was a chocoholic!

Exercise, something I loved until my arthritis got in the way, was also important. I used to dance vigorously several nights a week; now it’s once a week with weights, walking, and a stationary bike on the other days. I think I took sleep for granted before CKD, too, and I now make it a point to get a good night’s sleep each day. A sleep apnea device improved my sleep—and my kidney function rose another two points.

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

I was sure others could benefit from all the research I had done and all I had learned, so I wrote my first book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, in 2011. I began a blog after a nephrologist in India told me he wanted his newly diagnosed patients to read my book, but most of them couldn’t afford the bus fare to the clinic, much less a book. I published each chapter as a blog post. The nephrologist translated my posts, printed them and distributed them to his patients—who took the printed copies back to their villages. I now have readers in 106 different countries who ask me questions I hadn’t even thought of. I research for them and respond with a blog post, reminding them to speak with their nephrologists and/or renal nutritionists before taking any action… and that I’m not a doctor.

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

My experience proves that you can slow down CKD. I was diagnosed at stage 3 and I am still there, nine years later. It takes knowledge, commitment and discipline—but it can be done, and it’s worth the effort. I’m sneaking up on 70 now and know this is where I want to spend my energy for the rest of my life: chronic kidney disease awareness advocacy. I think it’s just that important.

 

SlowItDownCKD is the umbrella under which Gail Rae-Garwood writes her CKD books and blog, offers talks, participates in book signings, is interviewed on podcasts and radio shows, and writes guest blogs. Her website is www.gail-raegarwood.com.

Until next week,

Keep living your life!

Two Levels?

I am now the very satisfied user of a Bilevel Positive Airway Pressure Machine (BiPAP). I fought against this for years, preferring to use a Mandibular Advancement Device (MAD) instead so I wouldn’t be ‘tethered’ to a machine. After only two nights of sleeping with the BiPAP, I have more energy and less brain fog. Heck, that happened after only one night. I wonder just how much of the low energy and high brain fog that I was attributing to Chronic Kidney Disease was really from not enough oxygen and too much CO2 in my lungs.

Whoops, here I am jumping in at the end again. Maybe a reminder of what a MAD is would be the logical place to start. This is what I wrote in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2,

“…the MAD forces your airway open by advancing your lower jaw or mandibular.”

If your air passages are restricted, you’re simply not getting enough air into the lungs.

After well over two years, my sleep apnea started becoming worse instead of better, even when the MAD had been extended as far as it could go to keep that airway open. (Laughing over here; it sounds like an instrument of torture. It isn’t.)

You’re probably wondering what this has to do with CKD. I used my baby, What Is It and How Did I Get it? Early Stage Chronic Kidney Disease to find out.

“The first mention of the lungs was in an explanation of your nephrologist’s ROS. ‘Then came the Review of Systems [ROS]. …, the lungs were referred to with questions about coughs, shortness of breath and dyspnea.’”

That does still leave us with the question of why the lungs were covered at all in this examination for CKD. According to http://www.ncbi.nlm.nih.gov/pubmed/20676805, one of the National Institutes of Health’s sites, sleep apnea can raise blood pressure, which in itself is one of the problems of CKD.  It can also result in glomerular hyperfiltration.  The chart below is from their site.  Notice ‘eGFR declines’ is one of the results. These three areas are the most important to us as CKD patients, which doesn’t mean the other effects should be ignored.

 

What was missing for me was why it was so important to get as much air into the lungs as possible. Livescience at http://www.livescience.com/37009-human-body.html was able to help me out here.

“….The lungs are responsible for removing oxygen from the air we breathe and transferring it to our blood where it can be sent to our cells. The lungs also remove carbon dioxide, which we exhale.”

Why not a Continuous Positive Airway Pressure (CPAP) machine then, you ask? WebMD at http://www.webmd.com/sleep-disorders/sleep-apnea/continuous-positive-airway-pressure-cpap-for-obstructive-sleep-apnea explains:

“A CPAP machine increases air pressure in your throat so that your airway doesn’t collapse when you breathe in.” 

Got it… and necessary when you have sleep apnea. So the next logical question is why was I prescribed a BiPAP instead. Notice in the explanation from Livescience above that the lungs also remove carbon dioxide. Yep, not enough was being removed as I slept.

I liked this explanation of the difference between the CPAP and the BiPAP from verywell at https://www.verywell.com/what-is-bipap-3015273 :

“The key distinguishing feature of BiPAP is that the pressurized air is delivered at two alternating levels. The inspiratory positive airway pressure (IPAP) is higher and supports a breath as it is taken in. Conversely, the expiratory positive airway pressure (EPAP) is a lower pressure that allows you to breathe out. These pressures are preset based on a prescription provided by your sleep doctor and alternate just like your breathing pattern.”

It’s when you breathe out that you rid yourself of carbon dioxide. But I wanted to know why too much of that in your system is not a good thing. I was delighted to find this scientific, yet understandable, (albeit older) posting by then Ph.D. candidate Shannon DeVaney at http://www.madsci.org/posts/archives/2005-06/1118758011.Gb.r.html. MadSci is a service provided by Washington University in St. Louis.

“…much of the body’s excess carbon dioxide ends up in the blood…. The net effect of increased carbon dioxide in the blood is lowered blood pH (that is, the blood becomes more acidic). The ability of hemoglobin to bind with oxygen decreases with decreasing pH in a phenomenon called the Bohr effect (sic). Because of the Bohr effect, increasing CO2 concentrations indirectly reduce the oxygen carrying capacity of the blood.

Carbon dioxide can also react with parts of the hemoglobin molecule to form carbamino compounds. The formation of these compounds directly reduces the ability of hemoglobin to bind with oxygen and therefore also reduces the oxygen carrying capacity of the blood.

So, in these two ways (indirectly by reducing blood pH and directly by reacting with hemoglobin) carbon dioxide can reduce the ability of our blood to carry oxygen to tissues throughout the body where it is needed. It’s a good thing, then, that the excess carbon dioxide in our blood diffuses into our lungs, where it leaves the body when we exhale.”

Except in my case, it wasn’t. Hence the BiPAP to help me out.  If the results of the last two nights continue, it seems I needed an awful lot of helping out… and I didn’t know it. So far today, I have booked a combined 70^th birthday cruise to Cuba for Bear and me, conferred many times by phone and text with my wonderful sister-in-law – Judy Peck (mentioned several times in SlowItDownCKD 2015) – about cabins, insurance, land excursions, packages, etc., then gotten back to our travel agent with our decisions, spoken with three different doctors and two labs, communicated with three of my daughters, contacted our donation center for pick up, and scheduled several maintenance jobs for my house – and I’m not tired. I haven’t yawned once. I could learn to like living like this.

By the way, between Medicare and my secondary insurance, this is not costing me a thing. Oh goody, more money for our birthday present to ourselves.

Until next week,

Keep living your life!

Psoriatic Arthritis on Memorial Day

Today is Memorial Day. I find myself having a hard time saying ‘happy’ and ‘Memorial Day’ together.

For those of you outside of the U.S., this is a holiday started as Decoration Day by freed slaves after our Civil War to commemorate the lives of those who died earning their freedom. Slowly, individual states made this day for decorating graves a holiday and then it became a national one.

I am married to a veteran. There is nothing happy about this holiday, although there is respect and gratitude… at least in my house.

I have respect and gratitude for our living soldiers, too. That brings us to the subject of today’s blog: psoriatic arthritis and Chronic Kidney Disease. A close friend of the family – an Airman – wanted this information for his father. I was happy to oblige him, even more than I usually am to answer readers’ questions since he is military and he asked on Memorial Day.

As usual, we need to go back to the basics here. In this case, that means going back to the blog about psoriasis in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2.   That’s where I first wrote the following information about psoriasis:

“…according to Psoriasis.com at http://www.psoriasis.com/what-is-psoriasis.aspx

‘psoriasis is a chronic (long-lasting) disease of the immune system. While the exact cause of psoriasis is unknown, scientists believe the immune system mistakenly activates a reaction in the skin cells, which speeds up the growth cycle of skin cells.’

There are seven types of psoriasis.  The one you are probably familiar with – if you are familiar with any – is plaque psoriasis. WebMD at http://www.webmd.com/skin-problems-and-treatments/psoriasis/psoriasis-types?page=1  tells us:

‘About eight in 10 people with psoriasis have this type. It is also sometimes known as psoriasis vulgaris. Plaque psoriasis causes raised, inflamed, red skin covered by silvery white scales. These may also itch or burn. Plaque psoriasis can appear anywhere on your body….’

Here’s the most important information in that particular blog for us as CKD patients:

“…doctors now know they need to screen psoriasis patients for CKD, although it seems to be only those patients with over 3% of their bodies affected by psoriasis who have doubled their risk of CKD. With 60% of the population at risk for CKD, it could be that percentage may change once these routine CKD screenings for psoriasis are in place, especially since psoriasis is also so common among every ethnic group.  This, of course, also includes those populations we know are at high risk for CKD.”

But my young Airman friend asked about psoriatic arthritis and Chronic Kidney Disease, so we need to take a look at what arthritis is.

According to The U.S. National Library of Medicine at http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0024677/:

“Arthritis is a general term for conditions that affect the joints and surrounding tissues. Joints are places in the body where bones come together, such as the knees, wrists, fingers, toes, and hips. The two most common types of arthritis are osteoarthritis and rheumatoid arthritis.”

Hmmm, no mention of psoriatic arthritis. That’s all right. I’m sure the American College of Rheumatology can help us out here. There’s more information on their site at http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Psoriatic-Arthritis.

“Psoriatic arthritis is a type of inflammation that occurs in about 15 percent of patients who have a skin rash called psoriasis. This particular arthritis can affect any joint in the body, and symptoms vary from person to person. Research has shown that persistent inflammation from psoriatic arthritis can lead to joint damage. Fortunately, available treatments for are effective for most people. Psoriatic arthritis usually appears in people between the ages of 30 to 50, but can begin as early as childhood. Men and women are equally at risk. Children with psoriatic arthritis are also at risk to develop uveitis (inflammation of the middle layer of the eye). Approximately 15 percent of people with psoriasis develop psoriatic arthritis. At times, the arthritis can appear before the skin disorder.”

Ah, we know Chronic Kidney Disease is an inflammatory disease. Now we know that arthritis is, too. Being a purist over here, I wanted to check on psoriasis to see if falls into this category, too. Oh my! According to a Position Statement from the American Academy of Dermatologists and AAD Association at https://www.aad.org/Forms/Policies/Uploads/PS/PS-Maintenance%20Therapy%20for%20Psoriasis%20Patients.pdf:

“Psoriasis is a chronic inflammatory, multi-system disease associated with considerable morbidity and co-morbid conditions.”

Arthritis is an inflammatory disease; psoriasis is an inflammatory disease; and Chronic Kidney Disease is an inflammatory disease. The common factor here is obvious – inflammatory disease. So what, if anything, can my young Airman friend suggest to his father (other than the most important: See your doctor.)?

Certainly not to take NSAIDS. I defined  – and cautioned against – NSAIDS in the glossary of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. There’s been no new research to debunk this warning since then.

“NSAID: Non-steroidal anti-inflammatory drugs such as ibuprofen, aspirin, Aleve or naproxen usually used for arthritis or pain management, can worsen kidney disease, sometimes irreversibly.”

Well, what can the man do for these three inflammatory diseases? Let’s take a look at Dr. Rich Snyder’s guest blog in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1. In discussing probiotics and alkaline water, he threw in this little gem.

“Alkaline/anti-inflammatory based diet: Some say, “Eat for your blood type.” But, what is the DASH diet for hypertension? It is not just a low salt  It is also full of anti-oxidants and anti-inflammatory.”

Food as medicine for an inflammatory body condition? DASH diet? Whoa! I just realized that this is the way I’ve come to eat myself in the last nine years.  What is the DASH diet? “DASH stands for Dietary Approaches to Stop Hypertension….”

Take a look at the Mayo Clinic’s information about this at http://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/dash-diet/art-20048456. There’s far too much to explore here, but I do urge you to remember you have CKD, so although it is an inflammatory disease, you need to be mindful of your renal diet should you decide to adopt the DASH diet.

Until next week,

Keep living your life!

How Sweet It Was

I’ve had an interesting turn around in my health this last week of National Kidney Month. You did know it’s still National Kidney Month, right?  You did go get yourself tested for Chronic Kidney Disease, didn’t you? Hurry up! There’re only four more days left to National Kidney Month. You know I’m joking about this month being the time to get yourself tested, but I’m serious (unfortunately, sometimes dead serious) about getting yourself tested.

I know, I know, I’m preaching to the choir. But how many of you have told your friends, neighbors, family, and co-workers about just how simple – and important – these tests are. Let’s not let them become one of the 31 million with Chronic Kidney Disease or worse, one of those that don’t know they have it.

Excuse me while I step off my soap opera. Now, where was I? Oh, yes, the – ahem – interesting turn around in my health this month.

Okay, this is twofold. The first part is the weight. You think I’ve been having trouble keeping that in check since I started blogging four years ago, don’t you? I mean because I write about it so much. The truth is it’s been much, much longer than that.  Even way back in college when I was a size 7 for one day, I weighed more than ‘the charts’ said I should by 20 pounds or so. I looked good, I felt good, and my mom kept telling me I had ‘heavy bones,’ so I let it go.  Who knew any better back then?

What’s so bad about the extra weight you ask? You do know obesity is one of the causes of CKD, don’t you? Don’t feel bad if you didn’t. I didn’t. I just started noticing it showing up in the research in the last couple of years. That doesn’t mean it wasn’t there. It just means I never saw it if it was.

I mentioned weight in passing a few times in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. This is from my first nephrologist’s report:

“The report, of course, ended with a one – two punch: I would need to exercise for at least 30 minutes a day and possibly decrease food portions, so I could lose weight (all right already!  I got it!) for better blood pressure and renal function.”

Better blood pressure and renal function? That’s when my battle with the numbers became real. And that’s when weighing and measuring food according to the renal diet allotments worked for a while… until I thought I could eye measure. So I went back to weighing and measuring… and it worked…until bomb shell number two fell in my lap: pre-diabetes.

In The Book of Blogs: Moderate Chronic Kidney Disease, Part 1, The National Institutes of Health helped me explain why this combination of excess weight and pre-diabetes was a problem for CKD patients:

“High blood glucose and high blood pressure damage the kidneys’ filters. When the kidneys are damaged, proteins leak out of the kidneys into the urine. The urinary albumin test detects this loss of protein in the urine. Damaged kidneys do not do a good job of filtering out wastes and extra fluid. Wastes and fluid build up in your blood instead of leaving the body in urine.”

Let’s backtrack just a bit here. What does high blood glucose have to do with this? Well, that’s what tested to measure your A1C, which determines whether or not you have diabetes… or even pre-diabetes.

Back to The Book of Blogs: Moderate Chronic Kidney Disease, Part 2 this time, in which I decry my A1C woes:

“This time I went to WebMD for a simple explanation.  In addition to learning that pre diabetes means your glucose, while not diabetic, is higher than normal, I found this interesting statement.

When glucose builds up in the blood, it can damage the tiny blood vessels in the kidneys, heart, eyes, and nervous system.”

What I learned from my primary care physician on my last visit is that the A1C is not the only measure of diabetes. Although my blood glucose readings are still in the pre-diabetes range according to the A1C, my daily readings have sometimes gone over the 126 that’s considered diabetes. My head is spinning here. No one ever mentioned that magic number to me before.

I decided to conduct a little experiment last night. We know that high blood glucose is the result of sugar, but did you know that most carbohydrates turn into sugar? Last night I ate a chocolate bar and devoured at least half a dozen Saltines. This morning, when I pricked my finger and tested the blood, the reading was 129. Damn! Someone had to be the guinea pig and I volunteered myself… but all I’d proven was that sugar and carbs raise your blood sugar pretty quickly.

Now here’s the kicker. This is from SlowItDownCKD 2015 which is presently available digitally and should be out in print later this week:

“The Brits do a masterful job of explaining this effectively.  The following is from Patient.

‘A raised blood sugar (glucose) level that occurs in people with diabetes can cause a rise in the level of some chemicals within the kidney. These chemicals tend to make the glomeruli (Me here inserting my two cents: what filters the blood in your kidneys) more ‘leaky’ which then allows albumin to leak into the urine. In addition, the raised blood glucose level may cause some proteins in the glomeruli to link together. These ‘cross-linked’ proteins can trigger a localised scarring process. This scarring process in the glomeruli is called glomerulosclerosis. It usually takes several years for glomerulosclerosis to develop and it only happens in some people with diabetes.’”

My nephrologist told me to cut out sugar and carbs to lose weight. I’d already cut out sugar, so I cut out (or at least drastically down on) carbs. The result: a very slow weight loss. Of course, this is new to me so I don’t know if that two pound weight loss in a month will continue every month, but I’m willing to give it a try. Say, that’ll have a possible effect on eliminating the diabetes, too!

Until next week,

Keep living your life!

It’s National Kidney Month

March is National Kidney Month.  In the last few years, I’ve offered a new Chronic Kidney Disease book for sale during this month, but free on World Kidney Day. This year that’s March 10^th.  The third Book of Blogs: Moderate Stage Chronic Kidney Disease, this year’s offering, has been retitled SlowItDownCKD – 2015. If my CKD writing has a ‘brand name,’ that’s it. Same writer, same type of blogs; just a new title for the series.  Check both Amazon.com on March 10^th for your free digital copy.

There’s a reason there’s such attention being paid to our kidneys.  Last year’s National Kidney Month ‘Dear Abby column’ explains.

“DEAR ABBY: Hypertension runs in my family, but as a pretty healthy 49-year-old, I didn’t think much about it. I never realized that my pounding headaches were a direct result of high blood pressure. To make matters worse, the same high blood pressure that was causing my head to throb was also destroying my kidneys.

I wish I had known about my high blood pressure sooner and taken it seriously. When I finally learned about my kidney damage, it was too late to save them.

More than 73 million people are at risk for developing kidney disease, and I sincerely want to help them avoid this fate. My battle with kidney disease has turned me into an advocate for patients and those who are at risk. In honor of National Kidney Month in March and World Kidney Day on March 12, (Me: That was the date last year.) Will you please help me spread the word? — Lance Taylor in Minnesota

DEAR LANCE: I’m pleased to help you in this worthwhile effort. According to the National Kidney Foundation, 1 in 3 American adults is at risk for kidney disease. Major risk factors for kidney disease include diabetes, high blood pressure, a family history of kidney failure and being age 60 or older. Additional risk factors include kidney stones, smoking, obesity and cardiovascular disease.

Kidney disease often goes undetected because it lacks physical symptoms until the very late stages. By then the organs have already failed. But early detection, healthy lifestyle changes and proper treatment can slow the progress of kidney disease. Those at risk should have simple blood and urine tests to check if their kidneys are working properly.

Readers, if you are at risk, during your next physical examination, ask your health care practitioner to check your kidneys. To learn more about prevention, visit kidney.org. You will also find information about free KEEP Healthy kidney screenings in your area.”

I’ve written about the more than 50 local offices nationwide that help the NKF provide early-detection screenings and provide other vital patient and community services. I went to the website, clicked on ‘Keep Healthy Event in your area,” and up popped the locations of this particular event.

Several years ago, my daughter Nima asked if could guest blog during National Kidney Month from the perspective of someone who loves a person with CKD. These are some of the highlights of that blog.

“I have to admit when my mother first told me she had CKD I freaked out ever so slightly. My knowledge of CKD was minimal, if that, and it took more than a few times of Ma telling me that CKD was in fact manageable and not a death sentence to calm down…..

One thing I had to get used to was reminding myself to mention at doctor visits that a parent has CKD, and to please take blood work to keep an eye on my own GFR levels. Every now and then I’d also get a helpful reminder from Ma right before a doctor visit.

I … have another resource that not everyone else has: I have a mother who is also writing a very detailed book (Working on the 4^th one now.) about her experiences with discovering she had CKD. Getting a chance to read the manuscript of her upcoming book was probably where I got the meat and potatoes of my CKD education. (Nima is the professional Reader for all the CKD books I write.)

For those out there that have a loved one that was recently diagnosed with CKD ….don’t be afraid to ask questions about what you can do to help and what you should know about how CKD affects your family member or loved one. I was always worried about tiring my mother out until she finally explained to me that as long as she gets a chance to lay down/nap before we go out, she’s usually fine.”

But it’s not just getting tired; the following appeared on Yahoo’s PRWEB on Monday, March 14, 2011. I took the online test mentioned in the article (which is still there and highly recommended) and, sure enough, I need to see an audiologist. Consider taking the online test yourself after you read this little known information about CKD patients.

“People with Chronic Kidney Disease Should Have Their Hearing Checked:

March is National Kidney Month

 People with Chronic Kidney Disease (CKD) should take the Across America Hearing Check Challenge—a free, quick, and confidential online