One of the less attractive side effects of long term BigD is the gradual expansion of aches and pains in muscles and joints: hands, feet, shoulders and knees (especially knees!).
I first noticed it about two years after I returned to BigD in 2008. Slowly, my joints began to lose their flexibility. I started to get what I thought was arthritis in my hands and knees. I couldn’t get my right hand to make a fist, just a claw (maybe that’s what that guy, “the Craw” had in Get Smart?).
Anyway, my doctor diagnosed carpal tunnel. I had the surgery, and now most of my fingers can curl up in my palm (though pointer tends to stand a little proud of the rest). It’s still weak, and aches sometimes, but much better than the craw.
Dialysis and carpal tunnel a have more than a passing relationship, and many BigD-ers have the tell-tale scar at the base of at least one hand. In fact, one of the guys at my unit had carpal tunnel surgery on his left hand just a week ago, and he will soon line up again for the other hand.
The reason for many of these joint problems is that dialysis doesn’t remove all the toxins in the body. Over the years, some of the really small ones, like beta 2 microglobulin and others, build up as fibres in the joints and act to weaken the joint, limit its movement and cause pain. The same sort of pain you get from arthritis.
The only way you can clear these toxins is with a real live kidney. That’s why a kidney transplant, even if it only lasts for a short time, helps reset the aches and pains clock, by clearing out these tiny toxins.
So, three years on, my aches and pains are getting more noticeable. My legs seem to lock up if I sit in one place for more than a few minutes. It takes more than a moment to get my back working each morning when I get out of bed. The trouble is it’s hard to distinguish between what is caused by dialysis and what is just part of the wear and tear of getting to my 60s.
For example, I’ve always had a dickie knee (the left one). I fell the wrong way when I was playing football when I was young, and it never recovered. Luckily the other is still holding up (most of the time). Bad knees are not limited to people on dialysis. I know may people my age that have the same problem. Most played lots of sport when they were young and are paying for it now.
We all know the challenge of walking down stairs, but the disadvantage of weak knees became most obvious for me in a Bali toilet. We were at the airport, and I needed to go. So I shouldered my way in and selected the only available cubicle. Unfortunately, it was a squat toilet. As I said, I needed to go, so go I did. All was well until I went to stand up. Standing up from a full squat is pretty simple when you are young and fit. I was neither. I looked around, desperately searching for something to hold on to, to haul myself vertical, but there was nothing I was prepared to touch. So I rolled forward, put my hands on my knees and pushed. It was agony, but after the third try, I was vertical once again. I walked back to Julie on shaky legs and we sat together on real chairs for 10 minutes while I recovered my equanimity.
I’m not sure if there is a lesson in that story (beyond waiting for a western toilet next time), but maybe it’s another reason why I have decided to try for another transplant.