Day + 81, Fluid Dynamics

Unlike yesterday, today is a beautiful day here in Schenectady. Summer may be breathing its final breaths, and I'm enjoying it while I can. Every morning I'll head out and walk 6-8 blocks for some exercise. I'm not as limber as I was last week, but I can still walk it without getting sick or running out of breath. Imagine the scene in Rocky when he ran the streets of Philadelphia, except that I'm hobbling instead of running, and I have no hair.

I've been on the "Lasix once a day" prescription for only two days now, and it appears that while it is removing fluid, it is not removing it as fast as I'm putting it on. I may gain 2 pounds or fluid a day, and remove 1 1/2 pounds when I take the Lasix. If you do the math that's still 3 1/2 pounds a week, which is no good.

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Peripheral edema is a common side effect for amyloid patients who taken damage to their kidney. During the beginning of your treatment, your body needs all the fluids it can get. If anything, you are fed more fluids on a daily basis for infusion of medicine and minerals that your body desparately needs. As a result, the edema goes unchecked, and you might gain 30 or more pounds in fluid alone. Veteran readers will remember my stories of woe.

Once you've stabilized, the doctors will help you bring it down to a manageable level. While the edema may only affects your appearance, carrying large amounts of fluid definitely affects your quality of life. Along with looking like a hot-air balloon, you have these other side effects:

• Swollen feet mean you cannot put on anything but sneakers and slippers.
  
• Blood circulation is hampered. This means your heart has to work harder to pump the blood. Sleeping becomes more difficult because your extremities fall asleep much easier. Sleeping on my side became impossible.
  
• Blood pressure is usually reduced, making those with hypotension miserable and sick.
  
• Walking becomes difficult. Running or jogging becomes impossible.
• Squatting becomes difficult. Picking up something on the floor becomes a project, and a source of entertainment for others.
• In severe cases, as the fluid builds in your legs, you can no longer dress yourself.
• All of the above is very frustrating and depressing.
  

Make no mistake -- the side effects of my amyloidosis are comparatively benign to other patients. Indeed, I'd rather have it affect my kidneys in this way than my heart, lungs or nervous system. However, dealing with edema in an amyloidosis patient is a serious issue that needs to be given more consideration and addressed by doctors as soon as it is safe to do so.