My Trek into the World of Home dialysis
I was born with Spina Bifida, meaning I needed some nerves removed. This led to me having reflux, urine going back up into my kidneys instead of staying in my bladder, resulting in no bladder control. This preceded a long series of kidney infections while I was growing up, culminating in an E-coli infection in middle school that put me in the hospital for a week and scarred my kidneys.
After that, kidney failure was just a matter of time. It wasn’t until college that my nephrologist started to talk to me about dialysis and transplants. But being a 20-something college student, I didn't really want to deal with any of that. It all seemed like a huge life change and at the time I wanted nothing more than to just be a regular college student doing all the regular college student things. So, I ignored my kidney failure.
I continued to get sicker while doing my best to get on with my life the best I could. My appetite was dwindling, my energy was nonexistent, and then I blacked out and woke up in an ambulance where I was told I had a seizure from low calcium. And that was when I started hemodialysis. Now to be fair, though, I didn't feel great after dialysis—in fact on my treatment days I spent the rest of the day pretty wiped out. But at least it wasn't as bad as how I felt going through kidney failure.
Fortunately, it wasn't long before my mother matched as a kidney donor, and I received a transplant. In retrospect, getting a transplant was not the best thing for me. Due to my reflux and lack of bladder control, I was prone to infections, and infections and immunosuppressants are a bad combination. But, I had a bunch of doctors and nurses telling me how a transplant was the best thing for me and I never really thought it through. So, I had my transplant for about 2 years: 2 years of constant infections, and once my doctor started talking about going through kidney failure again and going back on dialysis, I told him to just start the dialysis now.
The last thing I wanted was to go through kidney failure again. So, I went back in-center. Three days a week, 4 hours a day. And that was life for about 10 years. I never switched modalities because no one told me I could. I never knew home dialysis existed—until my tech asked me why I was doing my treatments in-center. She told me about peritoneal dialysis and the second I heard there was a way for me to do my treatments at home I jumped at the chance. Then I found out that PD didn't work for me. It was uncomfortable, sometimes painful, and that was when my PD nurse told me about home hemodialysis. So, I trained for HHD and that's been my modality ever since, and it's how I became a patient advocate.
My home nurse was the one who told me about the patient advocate program, and she suggested I would make a good advocate. At the time I was in my 30's and I had been through several modalities. I saw it as an opportunity to help this community I had been a part of for so long. A chance to take this horrible thing that I had been dealing with my whole life, that had caused me so much pain and had brought so many complications into my life and turn it into something helpful. Maybe I could help other patients learn from the mistakes and the experiences I had lived through so they could avoid some of the pitfalls that didn't.
Home dialysis vastly improved my life and my health and all it took was just someone telling me that it was an option. So, I hope the more people I can reach, the more lives I can improve, even if it's just making the best of a bad situation.
Comments
Jeff Stumpe
Dec 11, 2024 4:20 AM
I had been told for the 12 years while on two kidney transplant lists that "a transplant was the best thing for me". I did think it through however, and after 10-1/2 years of flourishing on HHD - the only dialysis that I have ever known, at 68 years of age, I agreed to receive a cadaveric kidney in February 2023.
As a PKD patient diagnosed in 2002, my renal function had declined slowly over 10 years, providing me with plenty of time to plan my ESRD future. Thanks to a progressive nephrologist and the Internet, I educated myself on the treatment options and selected HHD.
I started hemodialysis with HHD training and was able to work full time for another 5-1/2 of my prime earning years while supporting business travel up to one week at a time using the NxStage System 1 cycler. From July 2012 through mid-February 2023, I conducted a mix of daily and nocturnal treatments weekly that permitted me to maintain very good health and quality of life that supported an active work and play life without restrictions.
My quality of life and health post kidney transplant have been life's worst with a seeming non- stop increase in chronic health conditions marred by nearly two years of endless encounters with countless health care providers.
I experienced 5 hospitalizations (including transplant) and 7 ER visits during the first 12 months post-transplant all attributed to the kidney transplant. In contrast, conducting over 2000 HHD treatments over 10-1/2 years resulted in 0 hospitalizations and 0 ER visits.
I now have a pacemaker to resolve 2nd Degree Heart Block whose symptoms arose two months post-transplant. I have been urinarily catheterized (urethra & suprapubic catheters) since late July 2023 for urinary retention. It took me 16-1/2 months to fully acclimate to blood phosphorus levels at less than 50% of those experienced for up to 14 years pre-transplant. During those 16-1/2 months I had 25 to 50% of the energy and stamina that I had pre-transplant while on HHD.
All of my health care providers in an academic medical center have not been able to offer any explanations, nor provide any guidance on my extraordinarily poor health outcomes as a kidney transplant recipient.
My former HHD nephrologist of 22 years (35+ years practice) has offered only that he has never had a kidney transplant recipient with even a fraction of my poor health outcomes. He did admit that he has never had a transplant recipient that had been on HHD for anywhere near 10-1/2 years prior to transplant. Therein lies the explanation for my specific situation.
I have now come to believe that the slow progression of kidney failure assured by polycystic kidney disease and the slow (years) ramp up in hemodialysis fluid & waste removal to match the progressive loss of residual kidney function was a trauma free process that was near immediately reversed in a matter of hours/days the moment the transplanted cadaveric kidney was functioning.
The "shock" to my system of that functioning transplanted kidney set in motion a series of catastrophic physiological changes. Most of those changes manifested themselves as chronic irreversible health conditions. Many of the changes were made worse by the transplanted kidney's new environment - me, along with the effects of anti-rejection and other meds and supplements.
I was very successfully weaned off of over 20 years of declining kidney function. That included 10-1/2 years of world class home hemodialysis. During those 10-1/2 years enjoyed very good health and an excellent quality of life. In great contrast, the virtual "flip of a switch", of the kidney transplant propelled me back in time to a 20-years prior kidney function level. A level that I could/should never have safely returned to in a matter of hours or days. I needed months or years.
If the nearly two years of poor post-kidney transplant health and quality of life that I've experienced are any indication of what the rest of my life will be, it seems that my choice to the "flip of a switch" in February 2023 may prove to be the choice of my life.