From a Book…

I was trying to figure out a new angle from which to write about Chronic Kidney Disease during National Kidney Month and decided that my chapter in the newly released 1in9 just might be the way.

By the way, I really don’t like shopping, but did so for a ‘fancy blouse’ for the fancy book launch. The day of the launch turned out to be the day I unexpectedly had anesthesia and I ended up not being able to go. From the pictures I’ve seen of the event, it was a fun event. Now I need another fun event to wear that ‘fancy blouse’ to.  After all, we can’t let a dreaded shopping trip go to waste, can we?

Without further ado, I present the first part of my 1in9 chapter:

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 30 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.

Once upon a time, a long, long time ago, before I’d ever heard the word nephrology, I paid no attention to my kidneys. I had just a vague idea of where they were located because I had big brothers. Every time they watched boxing, one or the other of them would yell, “Oh! Right in the kidneys!” when one guy hit the other on the back, sort of near the waist.  My mother attempted to feed us kidney beans once or twice, but three voices chorusing the 1950’s equivalent of “Uh, gross!” was enough to convince her they weren’t that necessary. My father had a friend who’d moved up in the world and had a kidney shaped pool. Of course, I never had a bird’s eye view of that as a child. So, we were a family pretty much ignorant about kidneys.

When I grew up, I never let my children watch boxing; it was too violent. I never even tried to feed them kidney beans, probably due to some residual abhorrence left over from my own childhood. I had no friends with kidney shaped pools, but I had flown in an airplane and could recognize one if we were flying low. That was the sum total of my kidney education. I didn’t even recall if they were covered in high school biology. My daughters, now grown women, said they were, but I didn’t remember anything about that.

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.

“That’s not normal,” said my new doctor as she looked at my blood test results.

I made the supreme effort of tearing my eyes away from the height and weight chart to ask, “What’s not normal?”

“Your GFR,” she told me.  I looked at her blankly. (In retrospect, I can understand how hard it probably was for her not to laugh at my empty eyes and a face without a shred of interest showing on it.) I said nothing. She said nothing.

Finally, I asked, “What’s that?”  She gave me a simple explanation with no indication that I should panic in any way, but of course I did.

“It’s what!  It’s below normal?  My kidneys aren’t functioning to full capacity? Why wasn’t I told? What do I do now? How do I fix the problem? I want them at 100%.”

Her voice rose over mine in a steady, sure manner. “This does not mean there is a problem. It means you must go to a specialist to see if there really is a problem.”

“Oh.” I didn’t believe her, but she not only talked, she had me in a nephrologist’s (kidney and hypertension specialist) office the next day. That’s when I started worrying. Who gets an appointment with a specialist the very next day? I was diagnosed at stage 3; there are only 5 stages. I had to start working to slow down the progression in the decline of my kidney function immediately.

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 CKD patients are most shocked, confused, and maybe even depressed—and the stages at which they have a workable chance of doing something to slow down the progression in the decline of their kidney function.

This first nephrologist 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 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. (More about that later.) You see, I’d already had a terrific Dad who’d known better than to ask me to give up control of myself. I didn’t need a doctor assuming his role… especially in a way I resented.

… to be continued. (This will take several weeks. It is a chapter in book, so it’s longer than my usual 1,000 or so word blog.)

Until next week,

Keep living your life!

National Kidney Month, 2019

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

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

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

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

Focus on the Kidneys During National Kidney Month in March

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Shining a Light on 1in9 

Last week, I began my blog post by mentioning that kidney disease awareness advocates have a habit of finding each other. This time, we had a little help.  I transferred to a new nephrologist because he was so much closer to my house. We spent some time getting to know each other as people new to each other do. Then he told me about another patient of his who is also working on spreading awareness, but via a documentary. Raymond, a transplant recipient that you’ll meet in a moment, and his brother who is also his donor, are both veterans. It made sense to me when his wife and partner on their documentary, Analyn Scott, suggested I post her guest blog about their project today since Veterans’ Day which was yesterday. Readers, meet Analyn; Analyn, meet the readers of the blog.

By now it shouldn’t surprise me that as I’m out and about I’m constantly meeting more and more people with a connection to kidney disease. That was not the case 21 years ago, or even four years ago for that matter. What changed? The opening of my eyes to statistics I was previously unaware of, and frankly I found to be quite shocking and unacceptable. I’ll get to those stats a little later.

21 years ago this month I met my now husband, Raymond Scott, on a blind date. A year out of the Army, here was this 29 year old handsome, kind, Southern gentlemen that swept me off my feet. Little did either of us know that three months later his kidneys would unexpectedly fail and that our journey would lead us to where we are today.

Like many others, although Raymond ‘crashed’ into dialysis, his previous medical records revealed that he had Kidney Disease, but he was not properly made aware of his status or what he could do to improve it. So our journey with Chronic Kidney Disease (CKD) began together with Raymond finding out he had End Stage Renal Disease (ESRD) and needing to start on dialysis right away.

Throughout the past 20, going on 21 years, Raymond has been on both peritoneal dialysis and in-center hemodialysis, had a kidney transplant that lasted for five years, and for the past five years has his hemodialysis treatments administered by me five days a week from the comforts of our home. With that, we’ve also had many twists and turns with Raymond’s health that often go along with ESRD. But, despite our own experiences, it wasn’t until we were invited as guests to attend the National Kidney Foundation’s Dancing With The Stars Arizona 2015 Gala that our eyes would start to be opened to the staggering statistics surrounding Kidney Disease.

As we enjoyed the lively and energetic dance performances I turned to Raymond and teasingly said, “Hey, that could be you dancing next year.” My eyes got big and my giggles stopped, and before I could get the words out of my mouth, Raymond already knew that look on my face very well and anticipated my next words, “Wait, why not you? You can do this!.”

Sure enough, Raymond was the first celebrity star dancer who was an active dialysis patient at the National Kidney Foundation’s 10th Annual Dancing With the Stars Arizona Gala on February 20th, 2016…..18 years to the exact day that his kidneys failed! He and his dance partner and instructor, Brianna Santiago, spent six months of grueling practices preparing for their energetic performance to Pharrell William’s song Happy, demonstrating the improved quality of life home dialysis can provide, and that dialysis does not have to be a death sentence.

As we picked up the torch of advocacy, we were led to start filming a documentary and create a non-profit organization to create hope and change the trajectory of kidney disease. As I was brainstorming with a dear friend about potential names for the organization, she said, “Wait, go back to that statistic you mentioned: 26 Million Americans, 1 in 9 adults have Kidney Disease….that’s it…..1in9.” That and meeting our incredible videographer was how 1in9 was birthed!

You may have guessed it, but 1 in 9 American adults having Kidney Disease was one of those stats that caught us off guard. And hearing that 90% of those with CKD weren’t aware was totally unacceptable to us. Diabetes is the leading cause of Kidney Disease, and high blood pressure….which took Raymond’s kidneys….is second. Kidney disease is the ninth leading cause of death in the U.S. and kills more people than breast cancer or prostate cancer. Surprising, right? It sure was to us, and we figured if this was news to us after all these years of living with it, then the general population must really be in the dark.

Our vision for 1in9 is to save millions of lives globally through awareness, prevention, and expedited research and development of regenerative medicine treatments and solutions. Last year our family headed out across country on an RV tour to raise awareness and film, while keeping up Raymond’s dialysis treatments five days a week on the RV. We met some incredible people near and far that continue to inspire us to keep pushing the wheels of change. Like our friends at…..

University of Arizona http://deptmedicine.arizona.edu/news/2017/1in9-kidney-challenge-founders-visit-ua-nephrology-faculty-researchers

Washington University https://nephrology.wustl.edu/1in9-kidney-awareness-documentary-visits-division-nephrology/

The Veterans’ Administration Medical Center in Washington DC https://www.washingtondc.va.gov/features/Living_Well_with_Kidney_Disease.asp

And our visit to UCSF with Dr. Shuvo Roy, co-Director of The Kidney Project, where we were able to hold the 3D printed bio-artificial kidney prototype in our own hands! Friends, if you haven’t already heard, change is not only on the way, it’s here!

We are still filming our documentary, releasing our 1in9 Compilation Book next March, and excited about other impactful programs we are launching that will help us bring Kidney Disease out of the public shadows of silence and misunderstanding and confront it head on with solutions.

To learn more and link arms to help keep the torch illuminating bright on our life saving mission please visit, follow, and/or contact us at: www.1in9kidneychallenge.com 
www.facebook.com/1in9kidneychallenge/ 1in9kidneychallenge@gmail.com

Analyn and Raymond have asked me to contribute a chapter to their book. I will be delighted to do so. As a Chronic Kidney Disease awareness advocate, I can’t begin to tell you how much pleasure I have at meeting more and more people with the same mission in life. We get to help each other spread awareness.

Until next week,

Keep living your life!