24 years on dialysis with aHUS



I just completed 24 years on dialysis. 14th of July 1997 was when I took those vaccines that triggered my kidney disease, Atypical Hemolytic Uremic Syndrome. I recently crossed one more milestone - that where I have lived more years on dialysis than with healthy kidneys.

After 24 years of living on the edge, I feel immensely grateful to be alive and be able to live a full life. Given the circumstances, I can hardly complain. Well, I will complain about the circumstances themselves, but things have turned out fairly well.

I have been blessed to be able to do Nocturnal Daily Home Hemodialysis. Few people in my part of the world can do this. If I wouldn't have been on this therapy, I am fairly sure my journey would not have lasted this long. Looking back, I am amazed at how this therapy came into my life. It was nothing short of a miracle. A lot of things just fell into place. And all this happened even before the idea of NephroPlus was born.

While I have taken my chances in these 24 years, I have learnt a few lessons that will hopefully keep me going:

1. Never stay without dialysis for more than one day. The two-day gap is what kills people on dialysis. Very few realise this. Several studies have shown this. Common sense points this way as well. I understand why people don't do this though. And that has a lot to do with the way conventional dialysis works. I would also hate the fatigue, the feeling of being drained and so on. But this gets to them, eventually. I have not given this gap for several years now.

2. Keep busy. I always say that Kidney Failure is as much a psychological disease as a physiological one. The mind is where a lot of the damage happens. So, it is important to keep it distracted and not let it be idle to think, "Why me?". I work full time, bake sourdough bread, make idli-dosa batter, teach kids at my temple every Sunday, am learning Biostatistics and R, the statistics tool online, am doing a course of the Tattvarth, a Jain text, write for this blog, am a trustee of aHUS Alliance Global Action, a global support group for my primary disease and am working on a book. All this, strictly outside office hours. I sometimes feel like I take on more than I can handle. 

3. Exercise. Both aerobic and strength. Apart from the good vibes that endorphin-release brings about, it keeps the body fit, which helps overall. Strength training enables me to climb two flights from the basement parking to my office in non-pandemic times when people with healthy kidneys take the lift. I exercise five times a week. On most of these days, I do both - strength training and either swimming or go for a walk depending on the weather.

4. Monitor Bone Health. Within a few years of dialysis, most patients figure out how to keep their blood parameters in check. Hemoglobin, Potassium, Albumin. You figure out. You can actually decide the dose of your EPO, Iron, the amount of fruit you can eat and when, how much protein you need and so on almost entirely by yourself. One thing that is more difficult and flummoxes even experienced nephrologists is Bone Health. Highly prevalent in long-term dialysis patients, this is difficult to treat. The various parameters that affect it are complicated. The resultant bone pain is not small enough to ignore and not big enough to make a scene. I monitor my iPTH, Calcium and Phosphorus every month. It costs me quite a lot but I believe it is a small price to pay to catch signs of trouble early and fix them. Well, at least try.

5. Be Mindful. I could never have imagined that a ten-minute meditation routine I started off a few years ago would become such an important part of my life. It has been about 5 years now. I have gone from ten minutes, once a day to forty minutes, twice a day to now, ten minutes, twice a day. The goal is to be more present in whatever I am doing. We humans have evolved to be distracted all the time. It was a necessity for survival. But now, when the dangers our ancestors faced are no longer there, we need to try to not let the mind be like a monkey - jumping from thought to thought aimlessly. But just be aware of what's happening, be fully in the moment.

As I embark on my 25th year on dialysis, I am thankful for the life I have. I couldn't have asked for more. I have been extremely lucky and I hope I can continue to do the things I enjoy and that make my life worth living.

Comments

Nisha said…
Dearest Kamal ..
Amazing journey indeed ..so inspiring.As a caregiver to my late husband I understand the issues and challenges life throws at us every single day.. You have always amazed me with your qualities like ..your approach towards life .your attitude and your hardwork etc etc ..I can go on and on. Keep going .Stay happy ..Stay healthy ..God bless !! ❤️

Usha Balasubramanian.
Kamal D Shah said…
Thanks so much ma'am.
Gajanan Lonsane said…
This post is very helpful to us .You are ideal to other who suffering Ahus disease .God bless you sir .
John Babu said…
Very inspiring kamal bhai
Jitendra said…
Kamal, you have been inspiration to everyone…
VIJAY said…
Good motivational message Sir.
God Bless You.
Shantanu said…
Absolutely amazing journey Kamal and truly inspirational. Best wishes for a good and happy life ahead 👍
Tanay Shah said…
Beautifully written. Inspirational journey.
Amazing human. Proud to be part of the same family.
Marien said…
I am just so very proud of who you are now, Kamal.
You've done a complete overturn of a kidney battle of sorts and come out victorious.
You've packed greater things into your life because of this hurdle that it ceases to be a setback.
You're one inspiring man, let me tell you!

I'm praying great and mightier things for you in the future.
So may you rejoice in all things, and again I say, rejoice, praying and giving thanks!
Aloka said…
Such an inspiring journey. You have really converted the tribulations of life into pinnacle of human existence with your power of positive thinking. Would love to meet u and get inspired
Unknown said…
Hi Kamal
Working with you over the last couple of years has been an incredible learning for me. To continued healthy productive life
Unknown said…
Kamal - You are an institution of inspiration. Thank you for writing and inspiring me. I wish to start a blog of my own once a day and I will . Lots to learn from your and you unending spirit.
Dear Kamal - I have known you for 18 years of your 24 year journey! You are an inspiration. Your edicts aren't just words - I have witnesses the rigour and discipline with which you have employed these in your own life journey.

If I had to add a point to your list, it is about staying positive. Your outdoor excursions, holidays, exercise schedules - it is all about your not letting your condition hold you back for even a day

Wish you many more decades of healthy, happy, fruitful living
Krishnan said…
True role mode that you are !! Wishing you many many more years of good health and cheer.Continue the great work you have been doing
Dr S Krishnan
Kamal D. Shah said…
Thanks so much all of you for your kind comments!
deepak chawla said…
Awesome journey Kamal. It’s quite disheartening and depressing to be in this journey of CKD but resolve of people like you make it easier for all patients like us.

Truly amazing indeed.
Unknown said…
Hi kamal sir
Can you share your daily diet?
What you eat on a regular basis?
Example 2 idlis half cup sambhar
Kamal D. Shah said…
I eat a completely normal diet. Everything that a healthy vegetarian eats. No specific diet.
Anonymous said…
Hi,
I have been following you since long.I had lot many questions with regards to CAPD where can I call or approach to get good details about the same.
Kamal D. Shah said…
Please email me at kamal@kamaldshah.com.
Unknown said…
Dear Sir, As you are a inspiration for all, It would be more inspiring if you can explore 'Night before Dialysis'.