Friday, July 3, 2020

Year 9 of dialysis: Transition to peritoneal dialysis

The last few months (March-July 2020) have been pretty life-changing for my dialysis regime.  In the beginning of March, the surgeons decided to operate on my shunt in order to fix a narrowing of the artery; the danger was that the shunt would shut down. One problem solved, but a new problem created. A couple of weeks after the operation, I developed a high fever and shivering. Because it's corona time, I am immediately quarantined for a week until the test results show a negative result. They never figured out what the infection was, but they gave me antibiotics anyway, and the  fever went down. Two weeks in hospital, and they send me home, continuing to give me antibiotics for three more weeks. Then they stop the antibiotics.

Three weeks pass, and then again I suddenly develop high fever (40 degrees celsius) and shivering. It's a Sunday evening, no doctor is reachable.  I just call the surgeon's number just out of desperation...and the head surgeon is sitting in his office on a Sunday evening, so he picks up the phone. I explain what's happening, and he tells me to call 112. I call them (for the first time in my life), and two firemen arrive home. They do some basic tests and decide I might have coronavirus (again). So an ambulance is arranged (the firemen came in an ambulance, but they are apparently not allowed to take me to hospital, they were more like a medical team) and I am brought to my usual hospital, where I always end up.

This time, I spent four or so weeks in hospital (it's all a haze, difficult to reconstruct). The first week was just in isolation, just eliminating corona, and then the remaining weeks they spent trying to figure out what was wrong with me. Eventually, after a very laborious PET scan (had to be driven to another hospital for it), they figured out that my shunt was infected. Shunt must be removed immediately---major operation. Because this ended all possibilities of doing hemodialysis, they installed an emergency catheter in my neck for continuing with dialysis. This was only a temporary solution; either they would need to build a new shunt on my left arm (the right arm is "used up") or do something else.

The doctors decided to switch me to peritoneal dialysis. The reasoning is that my left arm is the last resort for hemodialysis, and they want to wait till I am much older before they use my left arm. For the next years, I have to manage some other way.

Peritoneal is a very weird kind of dialysis: a tube is installed permanently in your abdomen (peritoneal cavity), and you put in 1.5 liters to 2 liters of fluid into the cavity four times a day, including overnight. The tube installation was done in another major operation (general anesthesia), and since late June I have switched completely to peritoneal dialysis. I have been doing it for a week now. The results are kind of mixed. The plus side is I never have to go anywhere to do dialysis; I can do it all at home or in office, just using gravity. I also feel much better overall; no fatigue from hemodialysis, a much more stable day. The negative side is I lose some 2-3 hours daily doing the procedure, which involves removing the fluid from the abdomen and putting in new fluid.  Also, I am having trouble removing fluid from the body, but this is probably because it is early days and it's not clear yet which combination of solution concentrations to use. I'm hoping this will work out.

Overall, this period from March to June has been truly hellish. The hospital was in corona-chaos both times, and I was kept in the suspected-corona-ward for a full two weeks. The patients I had to share the room with...the less said about them the better. No visitors were allowed, so I couldn't see my wife (she did visit me a couple of times, we took a short walk outside in a park). Even one whole month out from hospital I am struggling to pull myself together.

I really hope this is over now and I can stay out of hospital.


Wednesday, April 8, 2020

The most depressing thing about living in Germany

What bothers me most about living in Germany is the Rücksichtslosigkeit, the lack of concern that one is inconveniencing others, that is deeply embedded in the culture. For example, these days I have to do dialysis in a big center, with five other patients in the room. Some of these people are sleeping (it's exhausting to do dialysis). And yet, one person is happily chatting, loudly, on their phone; this has been going on for at least 40 minutes now. They just don't care how it affects the others. This behavior is not unique to Germany; but it is in stark contrast to the normal behavior in Japan. I have dialyzed many times in Kyoto and Tokyo, and not once has it happened that anyone would behave in such a manner. It's just unthinkable. I think it's this day-to-day consideration for the other that I miss most about Japan. There's much to like about Germany compared to Japan, and really on balance, I can't imagine living in Japan any more, not permanently. The quality of life in Germany is simply much better. But this aspect of German life really bothers me, and it's a mystery why nobody cares how others are affected. This kind of attitude spreads to everything, car drivers, cyclists, people in the subway, even pedestrians. It just makes life just a bit more miserable than it already is, and unnecessarily so.

Saturday, March 28, 2020

Why I quit twitter


Yesterday I deactivated my twitter account. I think that in 30 days from now, the account will be deleted (or so it says on the twitter settings page, I hope they are not lying).
I have been toying with deleting twitter for a long time. For a while twitter was very interesting. I also met a lot of interesting people, whom I then met in real life. I was also able to reach a wide audience for stats related papers, and for my students' research papers. If there were a twitter replacement for posting scientific papers, I would sign up. I guess google scholar notifications do that job, and blogs. I will post more on my blogs from now on.
So there is a lot of positive stuff to say about twitter, but there always was so much noise, even if one only follows stats-twitter. One also encountered a lot of truly crazy people. But what tipped me over was the recent crisis. This crisis resulted in everyone becoming an infectious diseases expert, posting advice and "useful" graphical summaries. Another weird thing that happened was that people started to whine. Their perfect lives had been ever so slightly disrupted. They couldn't do their Caribbean vacation, they couldn't go have a beer with their friends, they couldn't meet their relatives. Meanwhile there are people out there with serious life-threatening problems. This whole lot of people were just so...revolting. I decided to socially isolate myself from them. I even knew some of them well and liked them, but I realized I don't need to know how weak these people are mentally, and how spoilt they are by the luxury of good health and a basically normal life.
Discovering how much people are going to start whining if they experience even the slightest inconvenience is a bit like when you have known a friend for a long time, and you then suddenly discover something really unpleasant about them. Twitter delivers that kind of information about people, especially during this time.
Perhaps deleting twitter will give me a chance to re-set my life and develop a more inward-looking life, without any outside noise. I will continue to post cat pictures in my google photos album. I I will link to it from my home page. Because my cats deserve a wider audience; they are so wonderful.