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I would like to hear from anyone who has HCM

Posted by @billc in Hypertrophic Cardiomyopathy (HCM), Sep 20, 2011

I would like to hear from anyone who has HCM and what kinds of tratment they have received or are waiting to receive.


Posted by @monamampm, Jan 11, 2012

i am a 41 year old female recently diganosed with this. and i am scared. not sure what to do, any suggestions.

Edited: 10/25/2016 @ 10:32am


Posted by @brigid, Apr 4, 2012

You must have been diagnosed by a Cardiologist? He or she should be spending some time with you so you understand the problem, any available treatment, prognosis, and followup needed. If this isn't happening, ask your |GP for another referral and second opinion. Good luck.


Posted by @maryd, Jun 28, 2012

What were your symptoms?


Posted by @fishinglady, Aug 5, 2012

Have your doctor send you to mayo clinic. i went to the one minnisota. I had the same problem and had sugrey done with the top doctor there at mayo clinic in minniastoa. did they put you on medicane for it. YOur doctor can call up there make appointment for you. it will take a month before you get in for tests and they can do the sugrey there. I went up there and had all the tests done and had sugrey I had sugrey last year I was 41 years old when I had the sugrey done. I am thankfull that they did. I feel like a hole new person now because of it.


Posted by @fishinglady, Aug 5, 2012

I will be 43 this year and I am glad I had it done.


Posted by @fishinglady, Aug 5, 2012

i forgot to tell you they will explain everything so you could understand what you have the give you a book and tell you which one you have to.


Posted by @bettyp, Aug 15, 2012

I remember how incredibly scared I was when I was diagnosed with Cardiomyopathy in Dec. '10. I don't know where you are in your treatment process, but I'd say don't be afraid to ask questions, and find out as much as you can about it. There are quite a few different causes for cardiomyopathy. I think what lies ahead of you might be partly related to the cause. Be sure to find out about activity levels - I was encouraged to stay as active as I could without exhausting myself. I think gentle exercise such as walking is very important. For me, fatigue was the big factor - I was just so tired all the time.

I sought some counseling to help me deal with the emotional shock and fears that I had. It was very valuable. It helped me not feel like I was piling too much of my own fear and sadness on top of my family, too, to have a counselor to talk to. I know my family had their own huge challenges as the news sunk in and the many months passed without really clear answers as to what was in store for me.

I'm actually very fortunate, as I had cardiomyopathy that was caused by a heart arrhythmia called a Premature Ventricular Contraction and Ventricular Tachycardia. Fortunately for me, this was "treatable" through a surgical procedure and my heart is recovering very nicely. It took three tries before the surgery was successful - the final try was done at the Mayo Clinic, and it worked. In the meantime, though, I had over a year that was really difficult, as I tried to hang in there and come to terms with what was happening.

I think my situation was incredibly rare, though - I think Cardiomyopathy caused by arrhythmias and the kind that sometimes happens during pregnancy might be the only kinds that can recede.

I wish you the best, I know this is a difficult journey and no matter how much love and support you might have, it still feels like you are kind of alone, I suspect. That's how I felt. I did learn to appreciate many of the small things in life, though, as I went through the many months of tests and attempts at treating the condition before I was able to find a surgeon (at the Mayo Clinic) who was able to address the problem. It was a tricky surgery to do, but he did it. I'm eternally grateful.


Posted by @fishinglady, Nov 9, 2012

hope you went to mayo clinic to see which one you have they can correct some of it.

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