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.
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.
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