Wednesday, January 5, 2011

No Quality of Life

With the assurance that Dialysis was no quality of life way back in 2005, and my kidneys persisting in their decline to the point of requiring dialysis in 2007, I am pleasantly surprised to see 2011 annoyed more by my Fibromyalgia than my ESRD. OK I'm not saying it's a walk in the park. I've been to Hell and back and you should be warned, Hell is run by techs with a highschool education if we're lucky. But I found my way to a better place using PD (Peritoneal Dialysis) under my own control, and life is good; not perfect, but good.

People were shocked by the doctor who advised me to simply not bother when it came to dialysis because that was no quality of life. For my part, I found her advice quite reasonable, and was quite ready to accept the way things went as they went. But as I studied and learned, I found options worth trying. I was all set to use PD only to find my doctor worried I'd get cat scratch fever and die, so she shuffled me off to HD (hemo dialysis) instead. One foot in Hell, the other in Hell. It was horrid with young, not-too-bright techs controlling my care without reading orders or listening to information.

After a few months of too many surgeries, too much fighting for correct treatment, and a whole lot of rude and harmful treatment I stood up out of my chair and told my tech I'd rather die then have any of them touch me ever again, and walked out. Twelve days later I was set up with a nurse at home, the spare room converted to a Dialysis room. This went better for about 6 months though i still felt awful. When Someone in my home to helpt me helped themselves to something, and I learned my private nurse hadn't fully cleaned my dialysis machine in four months, I pushed for PD again with a second opinion carried back to my Nephrologist who was delighted to try the switch now that she knew me better and realized she needn't be afraid of my blindness or my cats.

With a few bumps and bobbles at first, I ended up on CAPD (Continuous Ambulatory Peritoneal Dialysis ) fully under my own control. I've traveled,taking boxes of supplies with me or having them shipped to my hotel. I have mercifully had no trouble in over 2 years (knock on wood) and as long as it works, I'm happy to be here. My own personal sword of Damocles is the awareness that many simple events could end my ability to use PD and force me back to the door of Hell once again. I have already decided when I cannot manage my own care, I will say my farewells. Until then, I simply pee like an oil change and carry on.