Today is the start of the 8th year of dialysis. 2018 has also been an eventful year. First, I broke my left wrist in a bicycle accident and ended up getting an operating to put a T-plate on the broken bone. That was a big drama that took away five days of my life, stuck in hospital, and just before the start of AMLaP right here in Berlin. The broken wrist meant I could not do night dialysis any more (because I have to press the holes in my shunt with my fingers once the needles are pulled out, and in the night clinic the patient has to do this him/herself, as the nurses are on a tight schedule and can't assist), and had to do day-time dialysis (Mon-Wed-Fri) in the regular clinic rather than in the night clinic. This was a horrible experience in itself, because I had to put up with other patients, who are usually total assholes. For example, one guy (Turkish, Arab, not sure) would play music on his phone without headphones, so everyone else has to hear his crap. I told him to stop it, and he turns to me and says in broken German, "What the fuck is your problem? Why don't you go and dialyze somewhere else if this bothers you?" That's the typical dialysis patient for you here in Berlin. The city attracts total jerks.
Then, because I could not press my shunt after the needles were removed, they used a kind of tight bandage to stop the bleeding. This in turn led to a shunt failure. I noticed one night at midnight that my shunt did not exhibit any "thrill" any more---this is a characteristic whoosh-whoosh sound that you can even feel by putting a finger lightly on the shunt. I had to pack my bags immediately and go to emergency. I spent the whole night there awake and freezing, waiting to be assigned a bed, and then they operated on me around 11AM the next day. So that was dramar number two. I can't remember how many days I spent in hospital this time, but it was a long time. It wasn't fun enduring a patient in the same room as me who watched TV all night.
Then I finally got out of hospital, and am back to nearly normal life, with (thankfully) night dialysis back on the table. The transplant looks like it's still far away. The doctors say I am still somewhere between 0 and 6 years away from getting a kidney. Waiting times are getting longer and longer in Germany because almost nobody is willing to be an organ donor, and the government is unwilling or unable to change the law to a default opt-in for organ donation. So, situation normal, all messed up.
Then, because I could not press my shunt after the needles were removed, they used a kind of tight bandage to stop the bleeding. This in turn led to a shunt failure. I noticed one night at midnight that my shunt did not exhibit any "thrill" any more---this is a characteristic whoosh-whoosh sound that you can even feel by putting a finger lightly on the shunt. I had to pack my bags immediately and go to emergency. I spent the whole night there awake and freezing, waiting to be assigned a bed, and then they operated on me around 11AM the next day. So that was dramar number two. I can't remember how many days I spent in hospital this time, but it was a long time. It wasn't fun enduring a patient in the same room as me who watched TV all night.
Then I finally got out of hospital, and am back to nearly normal life, with (thankfully) night dialysis back on the table. The transplant looks like it's still far away. The doctors say I am still somewhere between 0 and 6 years away from getting a kidney. Waiting times are getting longer and longer in Germany because almost nobody is willing to be an organ donor, and the government is unwilling or unable to change the law to a default opt-in for organ donation. So, situation normal, all messed up.
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