I used to drink a lot of fluid. Even though I dialysed six nights a week, I used to put on anywhere between 3 and 4 kgs between sessions. After my "gap day", I used to be at least 5 kgs above my dry weight. I remember a couple of trips when I missed two nights successively. I had put on about 7 kgs!
I never had any symptoms at that point. I never felt the need to restrict my fluid. I only had mild cramps or hypotension once in a way while on dialysis. This did not bother me enough to mend my ways. I also thought that if I am undergoing so much hassle and undergoing six nights of dialysis every week, what is the point if I still have to restrict my fluid?
I was wrong.
The human body is such a beautifully complex system. It works in such mysterious ways. Scientists have not yet been able to unravel even a small fraction of the hundreds of different processes that happen, all by themselves making use of only natural resources. When you think about how the human body functions without any artificial source of energy, without anybody directing it, you can only feel a massive sense of gratitude for the way all this works and how it all turned out this way.
Over the last year or so, after more than two decades on dialysis - I am close to twenty three years on dialysis - I have started feeling that my heart can no longer withstand large fluid weight gains. What comes as a surprise to me though is that I am unable to withstand even moderate weight gains of 2-3 kgs at times.
I got a bunch of tests to see what else might be causing the slightly heavy breathing that I develop after my non-dialysis nights. No test came out with anything wrong. Doctors say everything is fine and that I should not worry - with good reason - they wouldn't want to alarm me. I reached out to some experienced patients online and they told me that yes, years of excess fluid weight does take a toll on the heart even if it did not cause any symptoms at that time.
I was wondering how that could possibly happen? It was as if the symptoms were stored away in the locker only to be used after some years. How can that happen? If the heart cannot handle large volumes of excess fluid, shouldn't it protest at that very time? Why lead me down the garden path and fool me into thinking that 5 kgs of excess fluid is no big deal? Show me a symptom at that very time, damn it!
Well, what's done is done. Unfortunately I cannot undo this. I always felt the need for a CTRL-Z or a CMD-Z button in life. But that is not to be.
I have seen several posts on the internet forums saying that patients feel ok with twice a week dialysis, then why should they do thrice a week? It is a valid question in the Indian context given the affordability problems we face. I know that several research papers these days are supporting twice weekly dialysis. I am not myself a huge fan of this modality. Most of these research studies have not studied patients over decades when the impact of these decisions begin to rear their hood. They are mostly all short duration studies that have not seen what happens in the long run.
Even cheating on diet could have similar consequences. Your body may not display covertly the impact of a high Potassium or Phosphorus. But from what I have seen, over the years, these things that we've taken for granted can come back to bite us.
So, what we all need to keep in mind is that not having symptoms on dialysis does not mean that all is well. These problems can fester over a long time and then finally show their impact after a few years. So we cannot assume that we are ok doing less than optimal sessions or not following the right diet and the right fluid restrictions. We must realise that we will have to pay the price later in life.