Thoughts on Completing 25 Years on Dialysis
Reprinted from Kamal Shah’s blog on July 23, 2022: http://www.kamaldshah.com/2022/07/thoughts-on-completing-25-years-on.html
14th July 1997. The day my kidneys failed. After three innocuous inoculations, the CFH/CFHR1 hybrid gene that I had and did not know about triggered Atypical Hemolytic Uremic Syndrome, necessitating dialysis. This disease also did not allow my kidney transplant in November 1998 to succeed and I had to remain on dialysis.
25 years is a long time. Not too many dialysis patients survive this long. I have been extremely fortunate. I have been blessed with very committed doctors, skilled technicians and a doting family, all of which have ensured I don't give up and continue the fight.
Two things contributed the most to my long journey on dialysis - Daily Nocturnal Home Hemodialysis (DNHHD) and having a full time job.
DNHHD, recommended by my nephrologist in 2006, with extraordinary foresight and gumption has been one of the mainstays of my long years on dialysis. Most people on dialysis die because of issues with the heart - fluid overload impairs the heart's ability to pump blood and it eventually fails. DNHHD does not allow fluid to build up too much at all. This protects the heart.
Kidney failure has an enormous psychological component to it. I would argue this component is even more important than the physiological component. If the individual has a strong will and motivation to thrive, not just live, that's half the battle won. There has to be a reason to put up with the rigours of dialysis. Something to look forward to when you are off the machine. If this is missing, dialysis becomes onerous.
My work provides me with a reason to get out of bed every morning. That is what gives me the spring in my step, the twinkle in my eyes.
It's not all rosy though. Bone issues, Beta2-microglobulin build up, Parathyroid Hormone imbalancesand so on manage to keep my life exciting and ensure there is hardly a dull day. But at the end of the day, it's all worth it.
I can travel, eat and drink as I like, swim and pursue several hobbies, all thanks to my dialysis enabling me to thrive.
To those who are on the same journey as I am, I have only this to say - get as much dialysis as you practically can and keep your mind busy. This alone will see you through decades of a happy life.
Comments
Kamal D Shah
Aug 16, 2022 2:13 AM
Les
Aug 11, 2022 7:47 PM
A question if I may, does your work require much physical activity?
I’d also be interested in those on the pd dialysis journey
Owen C Gleaves
Nov 04, 2022 12:20 AM
I myself have been on PD for nearly three years without very many difficulties until recently. I came down with and infection of the perineal. Been in the hospital, treatments and home and currently on my last two treatments. A lot of supplies require a lot of room in your home.