“I Never Acquired the Art of Losing” - My Ongoing Struggle with Kidney Failure
I am an 88 year-old married man living in Los Angeles. This is the first tale of personal woe I have ever distributed. Bottom line: I am looking hard for a virtual kidney support group on something like ZOOM. My goal is to find an active group of people who have not yet surrendered to kidney failure. Although my quest for answers has been stymied and even roundly rejected, I am a believer in the “squeaky wheel” adage and believe that “hope springs eternal.” We can do this, I am certain we can.
Briefly: I have the best wife and family on the planet, I was incredibly successful in every business venture I took on, we have been literally everywhere in the world and to the Antarctic six times and Africa five. I have survived a heart attack, diabetes, and numerous other health challenges and always been able to rebound and move forward. A year ago, my kidneys decided to leave me in the lurch and that has been my challenge. The most popular encouragement I receive is essentially, “Do dialysis, take your pills, follow the rules, and you will extend what is left of your life.” And also, “Hope for the best no matter what.” If that is good enough for you, so be it. But it is not good enough for me. That’s the rub, of course.
I am on peritoneal dialysis during the day for 13.5 hours a day 4 days a week. Because of an old surgery, I am a slow drainer, so I must be able to manual drain when necessary. Because I have edema in my legs, my legs are tightly wrapped. This makes it a challenge to take a shower so I call myself “Stinky Jay,” and for some reason that does not help my self-image positively. Being on dialysis is a life-changing event in my book. I can only go outside on days I am not on dialysis and for me that is a proven problem.
So, what is wrong with this you might ask? I am a 100% satisfied patient of UCLA Health. They have been my “go to” for over 30 years. When I was diagnosed with kidney issues, that is where I went without a second thought. However, when the dialysis recommendation came up, I found they “farm out” dialysis to various dialysis treatment centers. These profitable centers focus only on dialysis, making them what some might call them “one trick ponies.” Dialysis is lucrative and they are not motivated to explore other options. Today more than 80% of dialysis patients are treated in dialysis centers.
One Size Fits All Medicine?
While working for my PhD, I was a Research Librarian at the Library of Congress. This has made me quite competent in searching for information on one subject or another. I recently searched the research literature seeking information on new or pending research exploring possible solutions to kidney failure other than dialysis. You may not be surprised to know that the “new kidney failure research” cupboard is quite bare. I did not find information that suggests serious research and exploration for an alternative to dialysis is going on. There was hardly a mention of serious kidney research seeking an option to dialysis. And little attention is focused on the possibility of reversing kidney disease beyond possible ways to comfort patients as life is prematurely “snuffed out.”
While more than 3.3 billion will be spent on Alzheimer’s research in 2022 only 690 million will be spent on kidney failure research. Yet, while 6.5 million Americans are estimated to suffer Alzheimer’s, about 37 million in the US suffer serious kidney failure. The case is not being built against Alzheimer’s research but for a better research expenditure balance between Alzheimer’s research and kidney failure research.
I am looking for a virtual support group where the members will share experiences and make suggestions. I am concerned about the realities of kidney disease and they are creating anxiety I struggle to manage. I would like to share experiences with people who believe those with kidney disease deserve more focus on research to reverse kidney disease.
NOTE: To share your contact information with Jay, please email info@meiresearch.org and the Home Dialysis Central folks will pass it on to him.
Comments
Jeffrey R. Stumpe
Feb 14, 2023 9:41 PM
Kudos for living the life you intended in spite of health issues that would have sidelined the majority of others.
I have been a home hemodialysis patient since starting home hemodialysis training in July 2012. The path to ESRD and chronic hemodialysis began in 1993, at 39 years of age with a diagnosis of high blood pressure. All my other vitals were normal, e.g. weight, lipids, blood work, etc, and I had no family history.
I was started on low dose Lisinopril and responded in ideal clinical fashion. In 2002, an annual physical with renal panel showed a creatinine level of 1.7 - loss of kidney function. My crack cardiologist PCP ordered a CT scan that revealed numerous cysts in my kidneys and liver and I was diagnosed with PKD, Polycystic Kidney Disease. Once again, I had no family history, but I now knew the cause of my high blood pressure identified in 1993.
I was referred to the nephrologist who continues to follow me some 21 years later. I soon learned that the single most effective preventative measure for treading PKD is blood pressure control.
By starting BP meds in 1993, I was actually slowing the pace of cyst growth and cyst numbers. My BP was monitored closely for the next 10 years as I progressed toward Stage V, kidney failure. By the time I had committed to starting home hemodialysis training, I was on three BP meds, had a creatinine of over 7 and a GFR under 15. I did not have any physical symptoms of ESRD and I still produced adequate urine. I could have delayed the start of HHD for up to 6 months, with my residual kidney function, but I was committed to the training.
I chose HHD with the NxStage System 1 Cycler and Pureflow SL (dialysate producer and storer) because of the portability needed to support business travel of one week, and HHD to support short notice multi-night travel using DaVita in-center clinics for short daily hemodialysis in the cities where business took me.
At home I was treating up to 5 times per week in the evenings and nocturnal treatments at least twice per week. I was able to do this for 5-1/2 years, working for two different employers full time until age 63-1/2 when I went out on STD and LTD until benefits expired 2 months before my 68th birthday.
I have been listed for a kidney transplant with two different programs for respectively 12 years and 11 years. I expect to be offered a cadaver kidney within months. All of this was made possible by good preventative health care and my choice of HHD as the modality for dialysis.
I highly endorse Henning Søndergaard's recommendation of home hemodialysis for all the reasons cited in the comments as well as my experiences of the past 10-1/2 years.
Pam Cress
Feb 13, 2023 10:29 PM
When the talk of dialysis came up, I dove into types of new innovative dialysis methods. I did find one method in a simple handbag that you carried with you. It was continuous dialysis which kept you healthier and much less material waste. I’ve also thought a great deal about the development of the artificial kidney which is currently being done at two US universities. More research monies applied to this development could revolutionize transplant requirements such as donor matching and anti rejection medications.
Wouldn’t it be nice to start a US wide campaign and march to draw attention to the lack of interest and financial incentives given to a disease so many of us deal with.
Forever Hopeful!
John Hewitt
Jan 13, 2023 12:31 PM
Henning Søndergaard
Jan 12, 2023 10:51 PM
You are (somewhat) right about the research part. Dialysis - PD and HD - have not changed dramatically since the 1960, and, yes, it is scandalous to put it mildly. But these are the circumstances and there are good people working on changing it all over the world. But as you might know, medical research is slow and arduous. And money is always the issue. In my book the major obstacle is that kidney disease is not 'sexy'. People understand Alzheimer's, cancer, and heart disease much better in the sense that they can relate to them. Of course, it doesn't make it easier that 90+% of us on dialysis die from heart disease and not directly from our kidney failure.
On a more personal note. Why don't you do home hemodialysis? If you spend so much time doing PD you are in every way better off doing HHD. Treatment is way more efficient. You can save time, maybe even do nocturnal HHD, and spend more of it pursuing other things when not on dialysis. Living in L.A. you should have plenty of opportunity to find suitable a clinic if your current one doesn't support HHD.
Leong Seng Chen
Jan 12, 2023 9:14 PM