Wednesday, January 20, 2010

Bone pain - the aha moment I was waiting for!

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!

15 comments:

PDS said...

EUREKA !!

U genius U ! Terrific job Kamal. U will get rid of this pain very very soon.

IGA Nephropathy said...

Bravo. Its quite exciting to read this and sad at the same time. It shows how we as patients have to take control...yet many doctors do not embrace the concept of patient taking active role (as they are just "patients"). I had to do this even with transplant...and even detected abnormal low levels of immunosuppresants that I told them will happen after discontinuing a certain drug (which I read on internet can cause higher levels). They said they did not see with others...but I insisted on a bloodwork with a local lab as i do not want to wait 2 weeks. It turns out it was quite low (and nobody knows what it means) and now my dose is doubled. On one hand I am happy that I avoided a 2 week low dose instead of 1 week but it also shows that sometimes you have to rely on your gut and research. Still it is sometimes difficult. It is also difficult in the US as they cant just order something unless it is in their protocol and if there is no other indication as insurance related issues come up.

Anyway, great reading this.

kartikthum said...

You are Dr. Kamal Shah, not just Kamal Shah! Seriously, for all the research you keep doing, awesome!! I couldn't really understand all of it, but I am so pleased you nailed the problem!

IGA Nephropathy said...

Forgot to ask...so the calcium levels in blood in recent tests were still OK? I guess if it is Ok...it must be from the calcium from the bones but just curious if the calcium levels were normal.

Kamal D Shah said...

Bhanu, the Calcium levels have been normal pre dialysis and lower than normal post dialysis. This has been very recent. It has been normal till about a month back. I am doing some research on what this means. But I think I have an explanation for all this including my PTH. I just want to be sure before I conclude. I will post on this soon.

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

Kamal D Shah said...

Thanks Prasan, Kartik and Bhanu for your comments!

Anonymous said...

Yippeee!! Wish you a fast recovery!

Aditya J said...

Kamal.. Did you emulate Archimedes.. The Setting was just right for it ;)

Kamal D Shah said...

Hahaha, well 'bath' actually means a solution that is put in a can and connected to the dialysis machine!

SCDAFF said...

"You are Dr. Kamal Shah, not just Kamal Shah! Seriously, for all the research you keep doing, awesome!! I couldn't really understand all of it, but I am so pleased you nailed the problem!"

+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 ;)

Shravan Kumar. M said...

Also get exposed to Sun rays daily at least 10 minutes to get Vit-D, there by your bones get strengthened along with Calcium supplements. I remember I have advised you to get exposed to Sun in another post where you referred your bone pain and difficulty in walking,...

Hope you will get relief soon :)

Jaya said...

That was a cool moment :) Congratz...hope the correction workds for you :)

Kamal D Shah said...

Thanks all of you for your comments. I really feel good! I just hope this works out.

Kamal

Anonymous said...

man! felt like watching a thriller!

Anonymous said...

Kamal- u a rockstar genius!

HK cousin