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Saturday, March 6, 2010

A diagnosis called what?

So, one day this hematology fellow enters my room to tell me he thinks they have discovered the diagnosis. Since the plasmapheresis treatments were not working, it was ruled out that I did not have the blood disorder TTP. I had an even rarer blood disease called Hemolytic Uremic Syndrome (HUS). But not only is it very rare, but it usually occurs in children...which I am not. Even more rare is the fact that I would later discover I had the factor H gene deficiency, a compliment regulatory protein that results in uncontrolled compliment activation after minor endothelial injury resulting in thrombosis. It is a very complicated disease process that could take up an entire blog itself. But I am 1 in a million who have this. The fellow goes on to tell me this disease has a high mortality rate, I would probably lose all kidney functioning and would have to begin dialysis. He was trying really hard to give me all of the grim information without totally scaring me to death, but he was unsuccessful. I asked him to leave my room because this was too much to digest all at once. About an hour passed and one of the most wonderful doctors I have ever met, my now hematologist, came back to my room to re-explained HUS and he gave me a more positive outlook.

So here is what I have. I have a blood disorder called HUS, which attacked and shut down my kidneys. I now have End Stage Renal Disease (ESRD) and am going to be on dialysis until my kidneys regain function or I get a transplant. Due to the ESRD, I now have high uncontrollable blood pressure....like 180/150, so I am taking about 10 blood pressure meds. All of this is going on in January of 2009.

Questions during this phase were, if I have the gene and was born with it, what made it activate and attack my body at age 28? I have many theories. One is my birth control pill I had been on. I was taking YAZ and it has been known to cause kidney problems, some doctors think a vaccination I received after Madeline was born (MMR) could have activated the gene or pregnancy itself. It could have been a combination of the three. Other doctors think maybe the last round of infections I had in December of 2008 could have had something to do with it. I guess we may never know but the stars must have aligned just right to make this happen. I do believe something in the environment triggered the HUS.

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