Well, there is a such thing of being too sick to participate in a Clinical Study. I went to Hopkin's in Baltimore, and did not qualify based on my Blood glucose levels. My A1C count was 7.3, and it has to be under 7. But, we are not giving up. I am following a very, very strict diabetic diet.
But, it is also more complicated that that. I initially sought medical treatment last year in the ER. It was 3/21/11. My entire GI system seemed to have just "shut down" I have a history of Chron's Disease, these symptoms are the total opposite of a Chron's "Flare Up". And then the nodules were discovered in the lower lobes that showed up in the abdominal CT. That has been the primary focus..my lungs.
Mind you, during all of the tests, both lung biopsies (one was open lung), I have dealing with horrible and nausea and pain way up high in my abdomen. So, a year later..still no treatment and all of the Dr's are stumpted as to what is going on with my GI.. If we can not get my sugar level down, and figure out what is going on, I will have to do the "normal protocol"
I really want to do the Trial, because this is so rare that there is not many of the Adult's newly diagnosed, and never received any kind of treatment for the Histiocytosis. It is critical for the babies and children, because this drug is showing progress, and it could be the medicine that is a huge ground breaking treatment for the kids. And as Adults, we would also benefit. It is very hard for Adults like me to get treatment because most Drs have never heard of this condition.
So, we pray, and wait.
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