Sunday, March 20, 2016

Fifth year of dialysis

So, I'm now in my fifth year of dialysis, my third year on overnight dialysis.  What has changed in these years?

1. I finally got used to night dialysis. The main challenge was getting to sleep with the noise of the dialysis machine (the machine can be very loud, these are really very old machines, not the fancy Japanese ones I saw in Tokyo and Kyoto). The other major challenge was keeping my shunt arm immobile for eight hours. I solved the sleeping problem by exhausting myself with work on the day of dialysis---I get up early and work non-stop to the point that I can't go on any more after 6PM, so that falling asleep by 9:30PM really is no problem any more. This works on most days. The shunt arm problem I solved by placing my arm on a cushion; the contact with the cushion provides enough of a cue to my brain to keep it stationary even if I am asleep. The brain is an amazing machine that can be trained to do virtually anything.

2. I have become really good at inserting my own needles. Gone are the days of failed punctures and fountains of blood. I can always get the needles in with no or almost no blood. I still occasionally mess up, but this seems to be within the bounds of normal error. My last serious error was about a year ago, when I went right through the shunt, but I have learnt to change the angle of the needle when I'm going in.

3. The skin on the shunt is getting weak from repeated puncturing. There are parts of the shunt where I cannot puncture any more or else I will bleed all night. The skin can't take any more assaults of the needle. So I have to creatively enter the shunt from the side, a bit of a challenge that I sometimes leave to the nurse.

4. Perhaps because I'm getting older, it takes much more work to retain muscular mass and fitness levels. If I don't exercise for a week, it feels as if I lost the last six months' gains instantly. This is an area that needs significantly more effort from me. I spent maybe four or five sessions a weeks, 1-1.5 hours each, exercising; once or twice a week, these sessions involve weights. Each session has about 40 minutes of core exercises (I spend most of my energy on maintaining core strength because I had a hernia operation in 2010 and never, ever want a repeat of that experience). The positive outcome of all this effort is that at least I don't have the typical potato-with-matchsticks-for-legs-and-arms look of a German professor. But I am definitely nowhere near the fitness levels when I was at my peak in my transplant days.  I am currently working with the Sports medical center at the University of Potsdam to build up an exercise program that will help me build up stamina. My goal is to get to 1.5 hours six days a week. Another measurable yardstick I set for myself is being able to do 250 pushups in multiple sets but in one exercise session. Currently I am at 150.  I will need to be very fit if I decide to get a transplant, the operation is huge stressor for the heart, and I anyway need to be very fit in order to have a decent chance of surviving till retirement. So I'm very motivated to fix the fitness problem.  One thing I don't know is: how fit can a dialysis patient get? Is there an upper limiting bound? It would be cool if I could talk to a doctor about that, but unfortunately such a doctor would have to know both about exercise science and dialysis, and such people apparently do not exist in my immediate circle.

So, now I just need to hunker down and keep going like this for another five years till I get high up enough on the transplant list. I'll be 57 years old by then, and will have to decide then whether to get a transplant.  If I get a transplant at 57 and it survives another 10 years, I could even spend the last 10 years of my working life as a nearly normal person.

In closing, I must say that I am extremely lucky to be living in Germany, and in Berlin in particular. I've seen dialysis establishments all over western Europe, US, and Japan. Almost none of them provide night dialysis; it's a huge luxury and allows me to live an almost normal life. Germany is really the only country I know (maybe apart from Japan) that really found the right balance between patient needs, sustainable medical cost, and quality of care.  A fantastic achievement.