Stayin’ alive

A kidney dialysis/transplant diary

Take a look

Bill Peckham, author of Dialysis from the sharp end of the needle and vocal renal patient advocate, pointed his readers to the following video recently. It broaches the uncertainty dialysis patients face about the government’s future involvement in our care.

It does leave you in an unsettled state of mind knowing that dialysis treatment is absolutely necessary to keep you alive and absolutely out of your range to pay for individually.

I can barely afford the prescriptions I take using a prescription plan. My costs are over $3,600 a year with the insurance plan and that doesn’t include the necessary meds administered to me at the dialysis center.

It can all be overwhelming in and of itself, add to that not feeling well in general, not wanting to give up working but feeling guilty at the time off that’s necessary to deal with these problems, some particular to me things such as the unknown problems causing constant swelling and pain in my legs, the clotting factors that seem to mess with my dialysis nearly every treatment, the low blood pressure swings I seem to sustain and it’s enough to make you have a pity party at the drop of a hat.

People depend on me. And I’m finding out how rotten I feel when I can’t fulfill their expectations.

This week my legs took a turn for the worse and I found myself monday night up on the side of the bed rocking back and forth in pain and unable to find a comfortable position to sleep. Pain was shooting through my thighs and the area was warmer to the touch and felt raw, almost as if someone had taken sandpaper to my thighs. It’s not excruciating but it is nagging, enough so to keep me from sleep.

So, I’m home Tuesday because of the pain and the fact that wearing jeans rubs against the suddenly tender skin and makes it almost unbearable. Just about any position is the same: Pain wherever the legs touch anything or anything touches the legs.

Tuesday evening at treatment I talk with the nurses about the situation. They call Dr. Yacoub because Dr. Voights is out of town on a family emergency. Dr. Yacoub prescribes an antibiotic, one different than the last two.

Wednesday, the legs are no better and sleep is still elusive except for 3 or 4 fitful hours during the morning. The swelling makes it feel as if my right thigh is going to split open at the back of my knee. I stay home because sitting upright as in an office chair is particularly painful to the area.

Thursday. Same old same old. I’m physically worn out and starting to get that way mentally and emotionally. We need to find out what this is or at least find some form of relief for it. During Thursday treatment, I talk to Dr. Voigt’s nurse practitioner, Jodi. She says Dr. V is on top of it and is discussing the value of a biopsy with a dermatologist. Personally, I don’t think it’s a dermatological problem but I do think a biopsy might give us some answers. Jodi says it’s also the only way to determine if the problem is nephrogenic systemic fibrosis. I’m hoping Dr. V is back in town Monday (when I start my new dialysis rotation) so we can get this search under way.

Jodi prescribes a sleeping pill in the hopes of giving me some solid sleep. I need it.

The treatments themselves are going about 50-50; half good, half problematic.
The venous access doesn’t seem to want to cooperate. It keeps clotting off just as the needle is sinking into the vein.

Last Saturday, Sean said we should start using wet needles to lessen the tendency to clot. That worked Tuesday, after they used a second venous needle because the first clotted even with it being primed with saline solution.

This Saturday, we tried 3 venous needles before it gave a satisfactory “push-pull.” Once it was in there, I got a whole minute’s worth of treatment before the machine beeped “no go” and we switched to my chest catheter. Treatment went pretty well until the last half hour when my blood pressure crashed to 66 over ??. 200 ml of saline pushed back and a 6 oz. cup of ice water later, the pressure came up enough so I could go home.

During Thursday’s treatment, Jodi asked about the clotting problems I was having. The nurse and I both told her they’re not new. I’ve had problems with clotting since I first started dialysis. I’m back up to 15,000 bolus of heperin during each treatment and at 5 mg. of coumidin because they’ve been trying to establish the arm access. My personal opinion is that that needs to increase to at least 7.5 again.

These, Mr. Peckham, (cough, cough) are a few of the reasons I don’t yet feel comfortable with the idea of home dialysis. If and when things even out for me a bit, I just may consider it.


May 4, 2008 - Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss

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