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.