Walking The Thin Man

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

Monday, January 15, 2007

No Pressure

I apologize profusely for the delay in updates, but I had not been feeling very well to post a coherent response. I'm pleased to report that I am "out of the cellar", so to speak, and although it took a hospital trip and a bit of medications, I am now on the mend again.

When I last reported of my status last week, I had been successful in controlling my edema, but this victory was short lived. Shortly after, I became rather lethargic, and generally in a miserable mood. I was having circulation issues and chills in the evenings. Knowing that the low blood pressure was one of the factors in my feeling miserable, I stopped taking the fish oil, since fish oil will naturally reduce blood pressure. There wasn't much change.

By the end of last week, I had developed muscle pain in my arms and legs, and became extremely worried. Was I coming down with something, or even worse -- had I relapsed again?

Thank my lucky stars for having the best team of doctors on the planet at my disposal. I sent off e-mails of distress to my doctors at Boston Medical Friday morning, talking about my recent decline and inability to manage my situation. Three hours later, I was in a waiting room over at BMC getting blood tests. Two hours later, I had the results of these tests.

The tests showed that for the most part, everything was fine. My bloods looked good, and so did the liver function tests. The only anomaly was one reading indicating muscle strain or damage, which coincided with the muscle pain. This was dismissed, as I had similar readings after my first transplant. We decided that the strategy would be to go through the weekend, and call back this week if the problems continued.

Although I didn't do anything different (other than stop taking fish oil), I felt a significant improvement on Saturday. I've come to the conclusion that my problem wasn't a relapse or too much medication -- but that I had been sitting on my ass too long, and needed to get up and get some exercise!

We're now three days since my visit to the hospital, and I am continuing to feel better, and the edema is threatening, but under control. Of course, I'm now making a point to leave my couch potato days behind and resume a more active lifestyle.

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