Stayin’ alive

A kidney dialysis/transplant diary

Get thee behind me

I’m feeling a bit overwhelmed today. I just deleted the rest of that sentence that said “and I’m not sure why.”  I am pretty sure why: It’s all these medical problems and the fact that it seems more complications arise daily.

Today I’m dealing with the idea that I probably need to be a lot more aggressive in treating my lymphoedema, or at least that’s what I think it is based on a diagnosis several years ago by my family  doctor and some reading on the internet.

The restless leg syndrome stuff isn’t the only thing bothering my legs recently. My calves also feel hard, 360 degrees around from my ankles that feel tight and nearly unbendable most of the time to nearly my arthritic knees. And they hurt. To the touch and on their own.

Then there are the mini saddlebags at the back of my knees caused by the extreme amount of fluid I was carrying in my tissues.  They’ve never quite gone away and now the “cores” seem to be hardening, too.

When I asked one of the Mayo doctors why my legs felt hard, he said the edema in them had begun to turn fibrous. That explains the hardness. What he didn’t say was that that’s one of the progressive symptoms of lymphoedema. Nor did he say how fluid can turn into fiber.

 And the cure for lymphoedema? There is none.

Treatments vary from :

1) “manual drainage” (translate that to gentle massage)

2) wrapping – a very, very complicated process involving elastic bandages wrapped from toes to hip overlaying  a kind of cotton batting-like material and a liner. Wrap compression is tighter at toes and lesser at the thighs. It usually takes longer to wrap everything than it does for the wraps to start falling down the legs which means the best time to wrap limbs is before bed. Sleeping thus wrapped is nearly impossible. Add a CPAP mask and its full-force wind in your nose and mouth and you can pretty much forget about sleep until you’re so exhausted you’d fall asleep in a the hopper of a cement mixer.

3) compression machines which wrap the limb in a vinyl balloon that inflates periodically to push the lymph fluid toward the trunk of the body. Some say they don’t work very well.

All of these treatments take time and money, commodities that are becoming ever more scarce in my life.

Maybe the account from Mayo’s I received in the mail Dec. 31 added a bit to this overwhelming feeling too. Cost of the assessment appointments, over $34,000. My initial share of the costs: $762. There are still insurance claims out in the amount of $22,000 so my cost may well go up.

Yeah, it’s only money and yeah, it was/is worth it and yeah, having insurance makes it an option at all. But I just feel like my own medical needs are nickel and diming me mercilessly and constantly.

Getting this out and “on paper” doesn’t seem to be helping my feelings of being overwhelmed. So, what can I do to help the situation:

1) Get my fluid intake back under control. I came off dialysis last night about 3.5 kilos over my last dry weight. All my fault and most if not all celebrating with fluids during the last week of 2007. Getting the excess fluid out of my system will lessen the tight feeling in my legs, though it won’t rid it completely.

2) Get back on the treadmill – daily – or make sure I get extra walking in somehow and somewhere. Too much exercise, the internet source i read (mainly from the Mayo site) can exacerbate lymphoedema so I’ll have to do some more research on that.

3) Lotion my legs and feet every day. Doesn’t do much for the aches and pains, but helps to belay possible infections.

4) See my family doctor for some more suggestions and encouragement.

5) Keep at the forefront the fact that life is worth all this.

This stuff follows you every day, every where, every minute, every bite, every swallow of liquid.

Growing old ain’t for wimps.

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January 2, 2008 - Posted by | diabetes, dialysis, fistula, health, kidney, renal diet, renal recipes, transplant, weight loss

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