June/July - The Search Continues

Looking back, June and a majority of July consisted of visits to the Cardiologist so he could tell me how serious my condition was and "adjusting" my medications.  We talked about Amyloids and possibly doing an endoscopic heart biopsy to "find" the Amyloids.  Well Amyloids are supposed to be systemic, that means they are everywhere, so it shouldn't be that damned hard to find evidence right?  WRONG!! Seems that the way these searches works is that you test an area and you don't find it there ... try again until you find it.  That's a lot of places to look.

So, I was sent to a dermatologist and they removed a salivary gland to see if they could find Amyloids.  That test was negative.  So next they tried a sample of fat from my abdomen.  Tried to get free lipo at this point but seems the dermatologist is smarter than I think.  Well that test was negative.  At this point, I'm a little frustrated because I have this thing they can't find in my body and they still don't want to biopsy the heart.  However, towards the middle of July my primary care doctor calls and says that I need to see a hematologist and/or rheumatologist.  Well at least we are starting to get some movement.  I start scheduling appointments left and right to get into these docs.  Seems that specialists require quite some lead time to get into see them.

I have to give props to my primary care guy Dr. Whitworth because he made a phone call and gets me bumped to the front of the line at my hematologist's office.  That and the doctor he recommends, Dr. Barve, totally rocks.  We'll talk about that in the next installment because this post is about the six to seven weeks that were wasted spinning my wheels with my cardiologist.  The moral I learned during this is to open your mouth and tell the doctor what you think and challenge them to do something.  I really feel, and you'll see in the next post, that with how fast things started moving in late July/ August, I missed out on chemo treatment time.  That is time that could have been spent decreasing the Amyloid deposition in my heart and possibly saved it to some extent.