Thoughts on completing 25 years on Dialysis


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 imbalances and 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

Nisha said…
Awesome ..Kamal! So inspiring ..Stay healthy & happy always ..God bless !! ☺️��
Usha balu.
Kamal said…
πŸ‘πŸ»πŸ‘πŸ» You are amazing. How simple you put all this 25 years in few words. Inspiring like many of your posts and you.
Jitu said…
Kudos to you Kamal…Hats off to you. You give so much of strength to others and positivity.. thanks.
Unknown said…
It's a very tough and long journey my dear brother, still the journey is very long, enjoy your life, be engage in your work, and always care, help,n support others patients,caregivers, and caretakers like you always do.proud of you my dear brother.
Unknown said…
God bless you sir, really inspired from you
Gus said…
Congrats Kamal! I have 43 years on hemodialysis myself. I do extended dialysis 6hrs 3x weekly..
Daya Pant said…
Congratulations Kamal. You have been an inspiration for all. Stay happy healthy.
Daya Pant
Apparao Mulpuri said…
It's a tough and long journey. Truly tu our are inspirational to many of us. Stay happy and stay healthy ☺️🌈🌈☺️πŸ‘¦πŸŽ‰
Sathish said…
Professor Robin Eady, Emeritus Professor at St John’s Institute of Dermatology at King’s College London and former Honorary Consultant Dermatologist at Guy’s and St Thomas’ NHS Foundation Trust, has died aged 77. And the world's longest surviving kidney patient after receiving dialysis from the 1960s. He spoke at a past ISN World Congress of Nephrology sharing his thoughts on living with kidney disease. Dr Belding Scribner, founder of dialysis for chronic renal failure in Seattle, wrote a 60th birthday tribute to Robin Eady, believed to be the longest surviving dialysis patient in the world, in 2017 for almost 60 years
I hope u will cross his record sir.
Unknown said…
Inspiring and positivity all along!