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Real members of MyHeartDiseaseTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Does Anyone Have Cardiomyopathy With Pacemaker/defibrillator?

Does Anyone Have Cardiomyopathy With Pacemaker/defibrillator?

about 3 years ago
A MyHeartDiseaseTeam Member

I have cardiomyopathy. It was diagnosed as idiopathic as it did not fit any category. I also had a bundle branch blockage preventing the electrical signals from reaching the ventricles and my pulse rate dropped to 20 bpm and I was fainting all the time. My ejection fraction was as low as 30%. I was given a pacemaker and after 1 year the EF went to 20% and was told I had "pacemaker syndrome". They implanted a biventricular pacemaker and a defibrillator combined (ICD).
My EF then went to 36% and I feel better however because of the size and location of the ICD I developed "Thoracic outlet syndrome".
This is pressure on a nerve bundle caused by weakness in the thoracic muscles and compression caused by the placement of the ICD.
Still working on it and it is getting better with exercise and strengthening the muscles.

about 3 years ago
A MyHeartDiseaseTeam Member

Hi Joan. Yes I have dilated cardiomyopathy which has resulted in heart failure with reduced ejection fraction. Does that sound similar to your situation?

about 3 years ago
A MyHeartDiseaseTeam Member

Dixie.
Good got you.
I started with a pacemaker then developed "pacemaker syndrome and my EF went to 21%
Implanted a bi vent ICD, paced 24/7 2.5 tears ago and now I dont know its there.
Living life to the fullest.
Battery is OK for another 3 years.

almost 2 years ago
A MyHeartDiseaseTeam Member

I was diagnosed with non-ischemic cardiomyopathy 16 years ago at age 52. My EF was 32, yet I had no symptoms (or pre-dispositions) of heart disease. When I became short of breath last winter because my EF dropped to less than 20, I finally said Yes to a combo pacemaker/defibrillator and medication. I am no longer short of breath. But because I had no other symptoms or signs, the only measurement we can look at is my EF. It has increased to 22.

almost 2 years ago
A MyHeartDiseaseTeam Member

Great job explaining it,
your correct on all things. Life is wonderful.

6 months ago

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