Walking The Thin Man

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

Monday, November 28, 2005

Day + 143, Lasix Adjustment #125

Ever have your weight taken on one of those scales in the doctor's office. You know, the one you stand on, then adjust the weights so the pointer balances itself in midair? No matter how much you move that damn slider back and forth, you can never seem to get the point to go to the middle and stand still.

Well, managing my edema with the Lasix medications has been a similar experience. There is no such thing as a 'perfect' dosage. Too little, and you fall behind, slowly gaining fluid. Too much, and you get sick.

I've estimated that currently I carry between 6-8 pounds of fluid on me during the course of the day. At this amount, it fills up the legs, but the skin underneath is still loose somewhat. My goal is to get as much out as possible, so yesterday I performed another 'course correction' by upping the Lasix from 100mg to 120mg a day. Whenever you increase the medication, that first night it is very powerful. I've lost 3 pounds since yesterday, but now I'm what done what I call 'scraping the bottom'.

My body 'scrapes the bottom' when I get to around 5 pounds of fluid or below. At this level, the water pills start to have difficulty pulling the remaining fluid (which are in my lower legs). As a result, it starts to pull from the rest of your body. This causes a number of things to happen. First, you get extremely dehydated. My mouth becomes as dry as a desert. Secondly, a lot of electrolytes get eliminated from your body, causing headaches and general maliase. You feel miserable, and get very moody. You can recharge your electrolytes by drinking some Gatorade.

It's not a good feeling, so I tend to back off and reduce the dosage. The result -- I remain with five or more pounds of fluid in me at all times. But considering that I had nearly forty pounds of fluid right after the treatment... I'll deal with the five pounds.

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