Wednesday, 22 October 2014 21:29

Worst bone pain ever

Written by  Kamal Shah
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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.

... http://www.kamaldshah.com/2014/10/worst-bone-pain-ever.html

Kamal Shah

Kamal Shah

Hello, I'm Kamal from Hyderabad, India. I have been on dialysis for the last 13 years, six of them on PD, the rest on hemo. I have been on daily nocturnal home hemodialysis for the last four and half years. I can do pretty much everything myself. I love to travel and do short weekend trips or longer trips to places which have dialysis centers. Goa in India is a personal favorite. It is a great holiday destination and has two very good dialysis centers.

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