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Well, saw the folks at NEMC today and as always they are wonderful! I was a bit dissappointed with the prognosis. Guess I was looking for an easy fix 
. But with me that is not to be.
It did make me feel good to know that they were trying everything they can. I'm just not a normal HCMer. Apparently, I fall in the very small percentage that does not respond to normal treatments and have no obstruction but lots of symptoms. And then comes my itty bitty arteries that can't take the heat from my big heart. We can't use the meds to dialate them because my blood pressure is so low to begin with.
Dr. Udelson and Dr. Maron said they only have two patients like this. Now here is the irony we are both in town the same week and we meet for lunch tomorrow! Talk about timing. Apparently I'm giving the docs a run for their money and we are going to start doing some different experimental stuff. Oh joy! But I am at the point I have to get my quality of life back so I'm willing to do almost anything.
So all in all I am still alive and ok. The next few weeks should be interesting. But I believe the piece of mind is a tremendous lift off of my chest and they also agreed I wasn't crazy!
Thanks to eveyone for their care and support!
Mary S.
. But with me that is not to be. It did make me feel good to know that they were trying everything they can. I'm just not a normal HCMer. Apparently, I fall in the very small percentage that does not respond to normal treatments and have no obstruction but lots of symptoms. And then comes my itty bitty arteries that can't take the heat from my big heart. We can't use the meds to dialate them because my blood pressure is so low to begin with.
Dr. Udelson and Dr. Maron said they only have two patients like this. Now here is the irony we are both in town the same week and we meet for lunch tomorrow! Talk about timing. Apparently I'm giving the docs a run for their money and we are going to start doing some different experimental stuff. Oh joy! But I am at the point I have to get my quality of life back so I'm willing to do almost anything.
So all in all I am still alive and ok. The next few weeks should be interesting. But I believe the piece of mind is a tremendous lift off of my chest and they also agreed I wasn't crazy!
Thanks to eveyone for their care and support!
Mary S.
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