Saturday, February 13, 2010

More on My Belly

This belly fluid continues being my latest issue. I first noticed it at the start of the year.
  • January 22: 5.5 liters
  • January 28: 5.0 liters (6 days later)
  • February 5: 6.1 liters (8 days later)
  • February 10: 5.1 liters (5 days later)
  • February 12: 4.0 liters (2 days later)
To me, it's seemed like the day that I get drained is the only day I feel normal. Then I quickly seem to fill up again, doing a lot of gurgling (don't ask me, that's the best I can describe it). On Friday the 12th, I had the "permanent" tube installed; I was surprised they got another 4 liters, but then again I wasn't.

I've been dealing with the tube since Friday. It's just pretty sore there. I haven't peeked under the dressings yet, but I'm supposed to have a nurse come by tomorrow to teach my how to do the draining and changing dressings myself.

As to what the fluid is and why this is happening, I don't really know. I hear some things with the nurses and doctors I talk to. Sometimes I wonder if I hear a sugar-coated explanation or not. It is apparently lymph fluid. It's because "my body is out of balance", or perhaps my kidneys or liver aren't working quite right.

I eat better when I am not so bloated, and I have really been trying to eat more. I see myself in the mirror and look skinnier and skinnier; I try to eat. When I was more bloated, say in the "over 4 liters" vicinity, I felt a lot of pain in my lower abdomen. I don't miss not having that at the moment and I hope I can keep it that way.

But I'm still not feeling all that dandy. The last time I really felt good was over Super Bowl weekend when Tony and Karen came to visit. I really enjoyed their visit and I am so glad that I was feeling as good as I was. (I had been drained that Friday morning and they arrived later in the day.) And Noel and Cathy dropped by the day of the Super Bowl too.

I "had my voice" during that time too, which was also quite nice. Too much of the time I feel winded or find it hard to talk at a louder volume or for any length of time.

Sometimes I feel kinda dandy, even if for just a fleeting moment, and I think, "I've fallen so far, but I'm feeling good and I can't wait to be myself again." And I'll imagine a time when I'm out working on the yard and doing normal things again. I may feel that way once or twice a day and almost every day.

But there are a lot more times when I'm lying in bed having a difficult time turning on my side to take some pain meds or something. This is difficult, and it's hard for me to tell which way I seem to be headed. I'm tired a lot and have a hard time getting comfortable. I really miss "normal".

Update (Feb 14):
Today a home care nurse came in to drain me and begin showing me how to go about doing so myself. It's not a terribly complicated operation; it will be a bit unwieldy at first for me, though.

Here's what it looks like with the dressing off (before draining me):


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