Interventional Cardiology Expert Forum
IHSS AF Cardiomyopathy
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IHSS AF Cardiomyopathy

I have an overall healthy 36 year old son, married with 3 young children, ages 2, 7 and 8.  
My son was diagnosed with IHSS Cardiomyopathy 20 years ago.  He has been seen by a cardiologist over these years and recently he changed doctors.  He had been taking "Cardizan" a beta calcium blocker, but his current cardiologist changed him to a beta blocker.  He had an electrocardiogram 3 weeks ago and the muscle in the left ventricle has enlarged dramatically and the blood is leaking into the mitral valve and also backing into the ventricle rather than flowing.  He was told that he would need surgery to remove the enlarged muscle in his left ventricle.  
I have been doing quite a bit of research on behalf of my son and I have found that the Cleveland Clinic is the best hospital in the nation for heart conditions and for this type of procedure that my son has.  If you could recommend what his next step should be, I would greatly appreciate knowing, as well as my son knowing where to start.  He was told to start at the Brigham & Womens' Hospital in Boston.  He was given a list of names of cardiologists.   We will be interviewing doctors and I felt that takes an awfully long time, but his current doctor in New Hampshire did not know anyone who specializes in IHSS.  We definitely need guidance as to what we should do.  As you can imagine, we are all very upset, concerned and confused and not sure where to turn.  My son also was told that he could no longer work or lift anything over 10 pounds.  He currently left his job, actually just last week, and is now the at-home dad.  
I currently live in the Boston, Massachusetts area and my son is in New Hampshire.   If you feel it possible, we would travel to your facility for a specialist.  
I would greatly appreciate hearing from you regarding this grave concern of ours.  
Thank you for taking the time to read this.  
Sincerely, An extremely concerned mother.  
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290383_tn?1193103921
The Mayo Clinic in Rochester Minnesota has a clinic for hypertrophic cardiomyopathy.  They could give your son an excellent evaluation.  Dr. Barry Maron is at the Minneapolis Heart Institute and he specializes in hypertrophic cardiomyopathy and he would be excellent as well.
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I have idiopathic cardiomyopathy, diagnosed in 2001.  My EF was 10, now after many different drug therapies, it stays at 30.  I was pretty symptom free this last year because I agreed to take higher doses of Toprol and titrated slowly to 200 then  I developed a severe allergic reaction to beta blockers.  I was on Toprol XL for years and continually complained that my beta blocker made me feel worse (some of the symptoms were similar to the allergic reaction), on Coreg I had anaphylactic symptoms and went to the hospital in an ambulance.  that episode was tamped down with benadryl.  I was put on low doses of bisporlol and continued with hives that were tamped down with extremely high doses of benadryl, allegra, singular, and zantac to an constantly itchy rash that covered my head to my ankles.  My life was unbearable.  I went to an allergist and dermatologist that did a biopsy and it was proven to be the beta blocker.  I went off it despite the advice of my cardiologist and my rash symptoms disappeared almost immediately.  The allergist says I can never be on a beta blocker.  The cardiologist says lets try different ones as it is the only treatment therapy for my cardiomyopathy other than an ICD.  I don't want to go the ICD route, is there ANYTHING  else I can do re drug therapy or ANYTHING. I have been off my beta blocker for 11 days and the rash is almost completely gone but I am beginning to see little signs that my breathing, etc. is being impaired.  I also take atacand, sprirolactone for my heart.  15 months after taking the beta blocker, I developed diabetes and take glucophage and januvia and control it well.
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