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!