I think I know what's causing the bone pain. This has been my biggest problem in the past few months. I am finding it difficult to go about my daily activities. Yesterday morning, I dug deep and analyzed everything carefully. It started with reading a post by Dr. John Agar, the expert on nocturnal dialysis in response to a thread on the Home Dialysis Central forums. He said that in Australia, they used a 1.6 mmol/l Calcium bath for dialysis.
I refreshed my Chemistry. Calcium had a valency of 2 which means that they were using a 3.2 mEq/l bath. In India, the norm is a 3 mEq/l bath. I was asked to use a 2.25 mEq/l bath when my Calcium had become too high. I was also asked to stop using Calcitriol which increases Calcium. This was around October 2007.
I immediately checked the Calcium in my current acid can. Guess how much it was?
1.5 mEq/l!!!
I was shocked beyond imagination! This was it! This was the reason I was suffering! I was asked to use 2.25 mEq/l, I was using only 1.5! Almost half. Obviously the dialysate was pulling Calcium from my blood. The blood in turn was pulling it from my bones, which is the store for Calcium in our body. My bones were being continuously leeched of Calcium every single moment of the day! I would obviously have pain!
Now a little history: I had ordered the special acid solution in October 2007 and my regular supplier was supplying it. I checked the first few times and it seemed to be all right.
At one point, probably about a year after this, my regular supplier had problems delivering this special solution. I got another supplier to prepare the solution for me. They also delivered the right solution for a while. Subsequently my regular supplier said he could supply the solution. I ordered the next lot with him. But this time, I told him on the phone to prepare the same low Calcium acid solution as earlier without mentioning the actual numbers.
Aha!
They did not bother to check obviously and some dumb ass decided to prepare a 1.5 mEq/l bath. I did not check. Obviously the same, I thought. Yes, I know. Totally my fault. I should have checked the label. And spared myself living with hell for the last few months and probably one or two more. Man, I feel so crappy. Totally avoidable. I don't even blame the supplier. They have no clue about how important this is.
I cross checked this with Dr. Agar and he concurs with my reasoning.
What next? "Get a truckload of Calcium", says Dr. Agar! I have fresh cans of regular Calcium dialysate. I have doubled my Calcitriol dose. I am going to be monitoring my Calcium weekly to make sure it does not go out of whack.
How much longer before the bone pain subsides? I have no clue. Neither does anyone else, I presume. I would say, at least one month before I can even begin to feel some relief. More for it to totally go. But I am relieved that most likely, it is the beginning of the end of the pain. That, sure, is a big, big relief!
Comments
U genius U ! Terrific job Kamal. U will get rid of this pain very very soon.
Anyway, great reading this.
One thing that is clear to me though - blood tests and scans are not the be-all and the end-all of our lives. The fact of the matter is things can take time to show up in measurable ways. So, you have to rely on common sense and logical reasoning.
Thanks
Kamal
+10.
I agree with kartik, now on you will be called as DR. Kamal Shah, btw does any one have good contacts in OU so that we can plan for awarding a doctorate to Kamal ;)
Hope you will get relief soon :)
Kamal
HK cousin