It's been a little over three years since I switched to Daily Nocturnal Home HDF. When I started, I had major problems with my Beta-2 Microglobulin (Beta-2m) level. It was very high and causing symptoms. I had to get carpal tunnel surgery on both hands.
I also started having severe pain in my right shoulder, especially when the room was cold. Winters were tough, and even in summer, using the air conditioner made the pain worse. The pain was so bad it would wake me up at night. I had to massage my right shoulder and do other things to ease the pain.
Oddly, this only happened during dialysis. When I wasn't on dialysis at night, the pain was not there.
I found out later when I researched on the internet that dialysis-related amyloidosis can cause symptoms like mine, especially during dialysis. An MRI showed amyloid deposits on my shoulders. After talking to my doctor, I switched to Daily Nocturnal Home HDF. As you can see in my earlier posts, this was suggested to lower my Beta-2m level, which was causing the amyloid deposits. If left untreated, these deposits can start forming in the heart and brain, which can be fatal.
For several months, I kept checking my Beta-2m level after switching to this new treatment. It would drop from 20,000 pg/ml to about 8,000 or 9,000 pg/ml, and I would feel happy. But then, within a few months, they would rise again to around 18,000 or 19,000. This up-and-down pattern was very frustrating. I wondered what more I could do since I was already getting the best form of dialysis there was.
I wasn't just doing hemodiafiltration, known for handling middle molecules well, but I was also doing it longer and more often—five nights a week for about 7.5 to 8 hours each night. Despite all this effort, my Beta-2m level wouldn't stay down.
Now, three years have passed. For some reason, I switched to a standard of seven hours every night and sometimes even 6.5 hours if I got delayed. But mostly, it was seven hours instead of the slightly longer sessions I used to do.
After following this new routine for about two to three months, I checked my Beta-2m level again. To my surprise, it was less than 2,000, which is within the normal range. Doubting the result, I checked again after a couple of weeks and found the same—less than 2,000.
I was really happy that my Beta-2m level was finally under control. However, I'm not celebrating just yet because there's always a chance it might go back up in a few months.
The shoulder pain is a different story. Sadly, from what doctors and some research on the internet tell me, amyloidosis can't be reversed. So, the amyloid deposits on my shoulder are unlikely to go away unless I get some other treatment like surgery. I went online to see if there was any way to ease the pain and found that raising the dialysis dialysate temperature a bit could help. I used to dialyze at a temperature of 36.5 degrees Celsius. I've now switched to 37 degrees Celsius. While the pain hasn't completely gone away, I do think it has lessened a bit. So, that's where things stand, but thankfully, my Beta-2m won't go up again. I'm just hoping for the best and will keep you updated.
Comments