Walking The Thin Man

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

Friday, August 31, 2007

Evaluation Test Results

First, I'd like to apologize to some of you who use Internet Explorer -- there was a problem with my blog template that prevented my blog from being displayed properly on your computers. My bad. I am very sorry, and hope that we can still remain friends.

Let me cut to the chase regarding my test results. My bone marrow labs came out normal. Oh yeah! There is no evidence of any further progression with the disease, and my free light chain ratios are normal. That means I can finally claim that I have achieved a complete response to the treatment!

On a slightly more somber note, my kidneys are still pretty damaged. I've had good improvement since the spring, but the rate of healing has started to slow down. It seems I will have nephrotic syndrome for now and in the near future. There's nothing they can do about that... we'll just have to wait and see.

Where do we go from here? Well, I will continue to see my nephrologist to keep tabs on my kidneys. And of course, I'll keep up on the drugs and the restricted diet. As far as the amyloid is concerned -- I don't need to come back to Boston Medical for another evaluation until next August.

I am very happy to hear this news as the disease has been stopped in its tracks for now, although I'm a little bummed out about how my kidneys are doing. However, the important thing is that my bone marrow is functioning normally. This is quite a relief, as I don't know what I'd do if the tests came out negative. I really hope it sticks. I am positive about my future, although I am still a bit sour from the good news they gave me last year, only to find that it didn't hold.

Time will tell.

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3 Comments:

At 8/31/2007 10:19 PM , Blogger Coffespaz said...

There you are!!! Of course we can still remain friends...absence makes the heart grow fonder. :-)

Glad to see that your tests came out fairly well. I have to come back to catch up on my reading but hugs to you that your tests are done and the news is good!

 
At 9/01/2007 1:48 PM , Anonymous Anonymous said...

Didn't work on Mac, either -- I couldn't see your blog from work (windows) or from home. I was going to email you today if I still couldn't see it. Glad to find that it's viewable again. :-)

 
At 9/02/2007 9:55 AM , Anonymous Anonymous said...

Yep still friends!!! Good your evaluation had good news in it...

 

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