Walking The Thin Man

In May 2005, I learned that I had developed amyloidosis, a rare protein folding disease. This is my story.

Wednesday, June 28, 2006

One Year Evaluation: Day 3

Well, it's finally over. Three days of tests, meetings with doctors, more tests... Although half of the time you are twiddling your thumbs in the waiting room, it is a grueling experience. The bone marrow biopsy really takes a lot out of you. It's been over 48 hours and my back is still a little sore.

There won't be any definitive answers about my status until Friday, but the preliminary blood and urine tests are very clear on two things. The first conclusion is that my body is recovering nicely from the stem-cell transplant. The blood tests do not show any red flags of a potential relapse. The second conclusion is that my kidneys have yet to receive the memo. There has been no significant change in its condition since I was released last August.

This means that one of two things are happening:
  1. I have achieved a durable response with the treatment, however, my kidney is too damaged to recover. To see this after a treatment is unusual, but not rare.
  2. There are still active amyloid deposits within my kidney (and body). The old amyloid is being flushed out of my system, however new amyloid is causing new damage. This would explain why I am not getting worse (but not getting better).
Obviously, I am not happy with either of these outcomes, but obviously, I'm rooting for the former and not the latter.

Perhaps the most positive note is my tryglycerides. They are down to 430 (from 644 in May). This recent drop I credit to not any of the medications I am on, but the fish oil I am now taking every evening.

It's been a long day, so I will cut this short. I make a phone call to my doctor on Friday morning to learn the results of the biopsy and light chain tests. Then we will take it from there.

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