Thursday, October 23, 2014

Worst bone pain ever

For the last few weeks, my bone pain has become really, really bad. A couple of days back, on my night off from dialysis, I woke up around 3:30 a.m. writhing in pain. I took a Dolo 650 mg and still couldn't go back to sleep. Currently, the pain is much worse than that during much of 2010.

As a senior nephrologist once commented, Mineral and Bone Disorders are the one thing in dialysis patients that doctors haven't really been able to get a firm grip over.

I have still not been able to arrive at the 'steady state' with respect to the balance between Calcium, Phosphorus, PTH and Vitamin D. We have played with the dose of Calcitriol, Cinacalcet, Phosphate solution addition to the dialysate and the dialysate Calcium level that would result in my levels being in the good range - and more importantly, staying there.

I haven't helped my cause by neglecting this in the current episode. I should have been much more proactive. I feel like an idiot now. Of what consequence is anything else in the world if I don't take care of my health?

I, the self-acclaimed 'savvy, proactive patient'!

I have reached a stage where I walk with a limp and almost every turn or twist of my body causes pain. Just what was I thinking?

Yesterday, finally, we have started Trial 1 - stopping of Calcitriol. I say Trial 1 because the frustrating part about this is that no one is really sure of anything. We will try this for a month and if it does not work begin Trial 2. And if that does not work either, begin Trial 3. Its so fucking ridiculous. In the meantime, if we do not get on the right track, continue to bloody suffer.

I'm sorry for the rant but it just feels so frustrating. Let's hope Trial 1 works.

3 comments:

Vijay said...

hi kamal, i read your blogs regularly. I must comment that u are a fighter and must remain the same, no matter what difficulties u may face. All the best.
Dr.Vijay

Anonymous said...

Will surgery alleviate the pain if not fix the problem entirely?

Kamal Shah said...

There are two pains - one is in the hip area and this could be alleviated by surgery. The other pain is more widespread and is due to some mineral imbalance which we are unable to nail down. This will not be helped by the surgery.