Walking The Thin Man

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

Monday, December 19, 2005

Day + 164, Taking My Evenings Back

Although I've been successful in getting the edema under control, it hasn't come without a price. Every afternoon at 4pm, I take 100mg of Lasix to neutralize any leakage that I've accumulated throughout the day. The water pills start to kick in about two hours after I take them.

There are some strategies which can help increase the amount the medicine removes, such as lying down and elevating your legs (preferably above the heart). Some behaviors, such as remaining in a sitting or standing position, or eating a lot of sodium, will reduce their effectiveness.

The water pills kick your kidneys into overdrive, telling them to eliminate additional fluid from the bloodstream. Unfortunately, your body does not have an 'extra fluid' sensor -- it will remove whatever fluid it can get its hands on first. This means that you lose a lot of minerals as your kidneys purge extra fluid. You lose a lot of electrolytes, and become dehydrated as a result. In severe cases, this electrolyte imbalance can cause malaise and mood swings. In addition, all of this kidney overactivity really drains you out (no pun intended).

All of this means that if I don't lay down and drink some Gatorade around dinner time, I am miserable. Of course, having to stay home every night as a result of this upkeep is starting to make me miserable, so I can't win.

Now I'm trying to get out more and enjoy my evenings by doing activities and hanging out with friends. As I do this, I'll certainly fall behind with my fluid upkeep, and I'll have to continue being inventive to overcome it.

1 Comments:

At 12/21/2005 1:48 PM , Anonymous Anonymous said...

Tony,
That is great news !!
Keep it up....

--Eric

 

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