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Hi-

As you know I have developed a severe cardiomyopathy over the last year. My

echo showed this last time that my EF has decreased from 40% to 20%. I've

become symptomatic since April with alot of shortness of breath, high resting

heart

rate, tachycardia,etc. My cardiologist feels it's all caused by the mito and

that is can't be reversed or really treated. My PCP however feels it has to be

addressed and has just prescribed Lanoxin for me. He said that the Lanoxin

will help with symptoms but will not improve my heart or stop the progression of

the heart failure. I'm feeling scared as to what to do. I've been told I'm

not a candidate for either of the types of med's used for CHF (Beta Blockers,

Ace Inhibitors) as my blood pressure is very low. It was 76/48 at the doc and I

was nervous. Since I have POTS my BP completely bottoms out when I change

positions. I was wondering if any of you knew of a good cardio who would see me

that treats heart failure caused by and associated with mitochondrial disease.

I'm willing to travel as this is so urgent and pressing.

Thanks so much!

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