Sunday, November 9, 2014

Only something that will prevent HUS recurrence can help me in the long run

I have often felt that I don't really want to get a transplant. I am leading a fairly normal life - working full time, exercising, traveling. Why would I want to do anything different? The only problem was the dialysis sessions I needed at night which I was managing fairly well. Well, travel was restricted but it was not a major problem and in a couple of years, we should see some portable machines come to India and that should be taken care of as well.

However, I am not sure if that is entirely accurate. Dialysis, however much you get, can never replace all the functions of the kidney. There are some functions that it does not even attempt to replace. That is left to the medicines to manage. We unfortunately know so little about the human body that it is always an uphill task to manage such intricate mechanisms within the body with a bunch of tablets.

Only a transplanted kidney can give you close to normal body functioning. Things like Mineral and Bone Disorders (MBD) are very difficult to get a handle of. I have experienced this first hand. I am struggling with severe, debilitating bone pain from the past month or so, something which has been getting worse and we were not able to do anything to arrest it. Even seasoned nephrologists agree that MBD is something that they are just not on control of yet.

The trouble with me is my primary disease - Atypical Hemolytic Uremic Syndrome (aHUS). With this disease, the chances of recurrence after a kidney transplant are more than 90%! Which pretty much rules me out from getting one unless I get access to a drug that will prevent recurrence of the HUS.

There is a drug Eculizumab that is available in many countries that has been shown to prevent recurrence of HUS in transplanted kidneys. There is one more drug (Omeros 721) in clinical trials stage. Both these drugs are not available in India yet.

I just hope they become available before my MBD gets out of hand.


Akhila said...

MBD requires monitoring of trends for appropriate dosing for stable labs. Is it difficult to manage even the patients with finances or is it perceived that patients would not come this far? What about patients on calcium tablets indefinitely? Why not tell them when to discontinue while ordering ? Then blame on finances and say India has more adynamic bone disease!

Nisha said...

Kamal...I completely agree...many complain of severe bone much so that they are unable to walk.many of my friends even had a physiotherapist coming home regularly...even that did not make any marked improvement... It will subside and then resurface again with a vengence...