March 13th 2021
So, how about me?
Exactly one year ago, I wrote the last update hoping it would take a long time before writing the next one. Especially because that would mean that nothing would have changed in my status. First of all: did something change with regard to my status. Well, actually not really. Or maybe it did. I’m not sure yet, but after one year today should be a good moment to give an update.
For starters, I still work full-time. Well, that’s a good start. Furthermore, I’m still able to do my workout twice a week, so that’s also a good thing. I can still enjoy a drink or a cold beer and there’s no complaining there either. Best thing of all: I’ve discovered a new hobby in the past year. Flying sailplanes. Man, what a great way to spend your time. It’s obvious that I should’ve started with that 40 years ago. The sum of all these thing makes one think that things are going okay and they actually are. Nevertheless things are going very, very slowly a little less than a year ago. A little bit faster out of breath, just a tiny bit more pain in my muscles and things just cost me a little bit more effort than a year ago. In the past year, my cardiologist found out that I have an irregular heartbeat with atrium fibrillation and I still loose too much protein through my urine. All the other blood values are remarkably solid though, with regard to Kahler’s disease and amyloidosis. But all in all, I’m still far away from the point at which I think I have the right to complain.
Recently a kidney biopsy was taken from me, because of the loss of protein. That was really cool! Not. I gave the nephrologist the opportunity to explain to me why that biopsy should take place and then I started to ask a few questions. When she told me that I had to stop with blood thinners, I asked her if she thought it was a good idea, starting to mess with medication another specialist had prescribed, without consulting him. I had a point there, she told me. My God. Fortunately for me, I’m a patient with a big mouth, but what if I was a 75 y/o timid man? I would have probably stopped the medication after which I could have ended up with a blood clot in my brains and train my tongue muscle the rest of my life while trying to steer the wheelchair I ended up in. Or something along those lines. Nevertheless, the biopsy went very well. Funny side note: I had to ask Bianca to leave the hospital shortly after the biopsy. We were have too much fun, which made me laugh all the time and I didn't want to get a internal bleeding. It didn't help and I started to urinate blood after three days. Fortunately it appeared to be a blood clot in my kidney, but once was enough for me. Anyway, I’m on an extra pill now, because it appeared that there was amyloidosis in my kidney. Yeah, duhh, I could’ve told that before that charade started. Now the big question is whether the pills will bring down the protein loss. If so, everything is okay, if not, then the 2nd line treatment will start. The next phase in my overall treatment. I’d rather postpone that as long as possible, but that’s out of my hands.
And so I live my life like everybody else. Even in Corona time, where I hope to receive my first Corona shot in two weeks. But again, as long as I can still do what I always did, I’m a happy man and you will hear no complaints from me whatsoever. So far the score up till today. If there is any more news, like starting the 2nd line treatment, I will be here more often. Until that time: so far, so good.
To be continued....