Stayin’ alive

I took  my leg swelling problems to Dr. J, my general practitioner, yesterday.  Not only is he an osteopath but he was a pharmacist before he became a DO.  I have a high regard for osteopaths in general and an especially high regard for Dr. J. He’s good people and a good doctor.

I wanted to run the problems and symptoms past him before I decide whether to make an appointment at Mayo, my nephrologist’s suggestion. Dr. J has a fine way of looking at the whole person, at least in my way of thinking, and that’s what I want right now.

He ordered lab work for some specialized blood tests that help identify rheumatological diseases such as lupus or scleroderma (I think many of my symptoms fit scleroderma or nephrogenic systemic fibrosis).

It’s not that I have to put a name to this - I don’t know if it’s a disease or what - but there are some drugs associated with each that might mitigate my pain.  If it is either disease, there’s no cure so finding a way to live with it is extremely important.

I’ve learned in poking around on the Net that calcium deposits are definitely something to be avoided, if at all possible.  So I have redoubled my efforts to take my phosphate binders with each meal and cutting back on my already abbreviated cheese consumption.  I can do without milk and ice cream, but cheese…oh, please.  I’ve always been like the little girl in the Christmastime commercial who attributes her huge hall of goodies from Santa to the fact that “I didn’t leave him cookies. I left him cheese!”

Sylvia passed away Tuesday.

I asked about her at Tuesday’s treatment, but the dialysis unit had not yet been informed of her death. “Every single patient I’ve had today has asked the same thing,” Gabe said. He said he expected her to “withdraw” from treatment.

It was not unexpected of course. She was 94 (according to her obituary. Sorry for adding 3 years, Sylvia.) and dialysis can be a strain on even young pups like me (61). But I’ll miss her spirit.

I think that’s the third death in less than a month and that’s enough for me, thank you.  Each one is pause for reflection, at least for me and I think that’s probably true of many of the patients on the unit.

Lately my thoughts have been running along the lines of “so, you’ve been on dialysis for a little over a year.  That’s a year’s worth of ‘extra’ living. What have you done with it? Have you enjoyed it? Appreciated the fact that you’re still here? Noticed something that made you stop to think you were lucky to be here to notice it?

I don’t obsess over the situation, but I do think about it - and life in general - much more than I did a couple of years ago.   

One of the downsides of having dialysis patients in a separate unit is there is so little opportunity to see a progression to wellness. Just hanging on to the status quo can be an accomplishment for dialysis patients.  Many are in and out of the hospital and when they do “withdraw” it seems to sneak up on us other patients: See someone at treatment on Tuesday and they may look a little tired, a bit pale, not be feeling well and by Saturday - or Thursday, for that matter - they’re dead.

Kidney failure and dialysis puts different strains with different side effects on your body.  It’s also hard on your immune system so you become more susceptible to the viruses and germs floating in the air.  You’re already sick on dialysis and the dialysis itself sets you up for more illnesses.

The result seems - in my vast year’s experience, she said with tongue firmly planted in cheek - that you watch people struggling, instead of to get well, to not get any sicker. No wonder transplant shines like the sole beacon of hope.