Barry ~questions, cardiomyopathy

[Guest guest]

Tonya I am so sorry to hear what you are going through. I know

it is difficult to see. We just went through it with my

grandaughter this last April. Though at the time we didn't know

that it was caused by mito. She also had a structural heart defect,

as do I. I also have had a pacer for the last 22 years. However,

my problem is having a slow heart beat. Before I got my pacer, when

I would go to sleep it would drop very low. it was once documented

at 18 beats per minute.I have also been having other symptoms and

had started to believe that I had Mito. After Elaine died, they

wanted to do an autopsy. We said they could as long as they tested

for mito diseases. They thought we were crazy (the same response I

got when I tried to have them test her for it while she was still

alive). They were really surprised when they found evidence of

abnormal mitochondria. Anyway, she was in the hospital waiting for

a heart transplant. One did not come in time.

They have heart assist devices that can help the heart do its

work. Have you discussed this with your doctor? They didn't have a

small enough one that they could use on my grandaughter. She was

almost 3. Since she died Primary Children's where she was is

beginning research into developing one for children. Is he a

candidate for a heart transplant?

Joanne