Walking The Thin Man

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

Wednesday, May 31, 2006

Latest Lab Results

Yesterday, I visited my kidney doctor, who I haven't seen since March. I was looking forward to this appointment, as my edema has improved significantly since then.

However, the results were not as I had hoped. As a matter of fact, they didn't make sense at all.

When I went for my six-month evaluation, it showed that my kidneys had made a remarkable improvement from 13.8 to 4.3 grams of protein leakage. This was great news, as it put me on a fast track to a rapid recovery (as far as my kidneys were concerned.)

Then I came back for a followup in March. There was improvement on my albumin and protein levels, but the protein leakage numbers were way off. We had dismissed them as a test glitch and moved on. I had the test redone in March to confirm, but never verified the results.

The latest lab results in May show that perhaps the test was not a glitch. As unbelievable as it sounds, I went from 4.3 grams of protein in my urine back up to 13.5 grams in March. In May, this went down slightly to 11.9 grams. My protein and albumin levels (the cause for all of my problems) did not change at all.

It just doesn't make sense. Why would they go down then back up, unless I was relapsing? And if I was relapsing, why is my other kidney functions stable, and my edema is noticably improved?

My 1-year evaluation, the big one, is at the end of June. The tests they perform at this evaluation will hopefully bring some insight into whether the treatment is holding, and how my body is (or is not) recovering.

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