Last week I look up the summary of my visit to the heart doctor.
It was a check up. I had questions I wanted answered. The visit went very well.
He said I am the same, no better no worse, as far as my heart goes. My heart failure is cause from the massive AVM.
My AVM is part of Cowden’s Syndrome. I have had the AVM since birth. It started in the hip and pelvis area and was not a problem till my early twenties.
This past year my vascular surgeon gave me pictures of my AVM. Its extra-large and now goes to my right knee.
Ok , I did find out some new stuff. I was not supposed to make it a year in 2007. So the fact I’m still here is a surprise to most doctors.
Didn’t realize that. We now have access to some of the doctors notes through on-line my chart. I saw a list of all my medical problems.
Pulmonary hypertension is first, followed by right side heart failure. Part of the notes were about my medical disability. First time I had seen it written.
Even though I have been on disability for a while it was still hard to see. It took some time, but I know it’s for the best.
- Woman raising awareness about rare disease (hanfordsentinel.com)