Being proactive about my health - no choice in the matter

I have been doing a lot of reading up, analyzing and documenting aspects related to my bone pain. The results have been promising. I have actually been able to figure out something that the doctors have been flummoxed by. Honestly, without being modest at all, I don't think what I have come up with is anything out of the ordinary. Anyone, with basic common sense, and more importantly, the willingness to put in the time and effort could have arrived at the same conclusions as I did.

Then why did the doctors not give me the breakthrough? After all, they have studied this stuff at medical college and they have been in this field for years now. If anything, the solution should have struck them as soon as they heard about the problem. This did not happen. Why?

The problem is time.

Doctors I interact with and who treat me simply do not have the time. They do not have the time to look at an individual's case, think about the problem and analyze it from different angles. They are dealing with so many people like me with a gamut of problems. If they had to spend the amount of time required to actually solve these kinds of problems, they cannot even give the minimum amount of time required for each patient.

Where does that leave the patients?

The vast majority of patients I have come across are not familiar with computers or the internet. They continue to manage with the bare minimum advice they receive from their doctors. If they are stuck with a problem that is not being diagnosed correctly by their docs then they simply continue to suffer. They have no recourse.

For people like me, the internet turns out to be invaluable. Almost life-saving. Using the internet, I have a wide range of resources at my disposal, access to cutting edge information and also the opportunity to reach out to experts in the field who are often kind enough to respond helpfully to someone they have never met, never seen, do not know and someone who is possibly half way round the globe.

Its simply a matter of being willing to put in that extra effort to help yourself. Who benefits but you?

The next step for me is to find out all I can about a potential transplant. Just what is this disease - HUS - that is so predisposed to recurrence after a transplant? What can be done to avoid recurrence after a transplant? What immunosuppression regimen is best in my circumstances?

I have a busy few weeks ahead!


Shan Chelliah said…
Hi Kamal,

I fully agree with you, the internet is a great source of information to deal with complications of kidney disease. Kudos to you for figuring out the problem with your dialysate that probably led to your bone pains.

Need your input on something ..... I've suddenly had a drop in my Hb levels, it haovered around 10.5 mg/dl for some time, then dropped to 10.0 and 9.9 in Nov and Dec '09. In Jan '10, it dropped to 8.6.

The doctor who consults at my dialysis center suggested the obvious ie upping my EPO dose. But I'm trying to understand why it dropped suddenly.

Appreciate any thoughts that you have :).
Kamal D Shah said…
Have you checked your iron stores recently? Serum Iron, TIBC, Ferritin? These could give you a clue.

But yes, increase your EPO level without waiting. Low Hb can make you feel quite bad. EPO usually does the trick. But yes, it would be interesting to know why the drop was there.

How are your WBC and platelets? Have they changed from before?
Shan Chelliah said…
Hi Kamal,

I consulted my nephrologist (Dr. Fauszi) today, he also recommended increasing my EPO dose. I'm currently on 4000IU/week, so I'll be increasing by another 2000IU.

My Ferritin levels are at 900+ (ng/ml?). It used to be at 400+ in Nov, I thought this might be the reason for the lowering of RBS and Hb readings. So, I took Venofer drips in Nov and Dec.

WBC is slightly elevated (always has been) and platelet levels are normal. Dr. Fauzi also recommended a full Iron Studies test, as well as a stool test to check if there's any internal bleeding. Hopefully I'll have a clearer picture when the tests are done.
Kamal D Shah said…
Shan, you should get on to a mailing list / forum (if you are not already). I get many of my answers from there. There are some experts also and you usually get some very good ideas.
Shan Chelliah said…
Will do :) .....