Health Update
I have been living with AL Amyloidosis for almost three years now. My free light ratio continues to be normal!
“I don’t expect your levels to increase anytime soon, and if they do, we’ll just zap them down again. For someone like you who has had a good response to treatment, and who’s organs continue to improve, your life expectancy is pretty much back to normal now.” Wonderful words of comfort from my hematologist.
My kidneys continue to improve. My GFR at it’s worst was 22. It is now up to 40!(For those of you who don’t know what GFR means, it is glomeruler filtration rate, and means my kidneys are functioning at about 40%. Not ideal, but if it stays steady I can go a long time without any major treatment. I now manage my kidney damage with diet, sodium and fluid restriction, and medication. The goal is to keep them as healthy as possible to prevent any further damage.
My liver which was once hardened and enlarged is now softened, back to normal size, and all liver function tests are normal.
My heart is also doing better! My BNP and last echo were both normal. I have a slightly irregular beat and it’s sometimes a little fast, but does not require treatment. I’ll take it!
I consider myself so lucky. I was lucky to be diagnosed at a relatively early stage before too much damage was done. So grateful for my healing!
2 thoughts on “Health Update”
Hello,
My husband was diagnosed with AL Amyloidosis Oct. 4 2017 and as you know it’s been a crazy road. We just had a baby prior to that and we get our treatments at SCCA in Seattle WA. He is 49 and we also caught it pretty early as we are avid hikers and he was slowing down tremendously. When he couldn’t keep up with me when I was days from giving birth we knew something was wrong. He had no doctor so I got him in to see a natural path doctor who amazingly discovered it on the first visit!!! I would love to hear more stories of families going thru this. We have 4 more weeks of chemo plus an experimental drug called Daratumabib ( I know I’m spelling it wrong) but he is pretty much in full remission right now. After the 4 weeks then he will only be doing the experimental drug once a month for the next year and a half.
Hi Summer, So sorry to hear of your husband’s diagnosis. But yay for remission!! Im happy to hear the treatments are working:) Dara does seem to be doing some wonderful things!