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Hypertrophic Cardiomyopathy (HCM) | Last Active: Oct 26, 2016 | Replies (30)

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@colleenyoung

Welcome @bibi12,
There are several discussions in the Heart group about cardiomyopathy and HOCM. See these
https://connect.mayoclinic.org/discussion/hello-i-was-diagnosed-with-hocm-last-year-i-have-been-told/
https://connect.mayoclinic.org/discussion/hello-i-had-surgery-at-mayo-in-2014-a-cardiac-septal-myectomy/
https://connect.mayoclinic.org/discussion/what-is-cardiomyopathy-can-you-explain-systolic-cardiomyopathy-how-about-diastolic-cardiomyopathy/

But I welcome this new thread specific to severe cardiomyopathy. Let me introduce you to the gang. Please meet
@cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag

Bibi, why don't you start off the conversation and tell us a bit more about yourself? How long have you had HCM? Have you had a myectomy? How are you managing today?

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Replies to "Welcome @bibi12, There are several discussions in the Heart group about cardiomyopathy and HOCM. See these..."

Do you have HCM, or some other type of cardiomyopathy like dilated, pehaps? Let us know a little more about your situation.

Thanks for replying. <br><br>I am 52 and at the age of 50 went to see a cardiologist for a simple stress test. Instead a sonogram and ekg showed severe cardiomyopathy. I have no family history of heart disease at all and never suffered from anything related to the heart. I was running half marathons with no issues. I was beyond surprise when I was suddenly diagnosed but second opinion confirmed everything. For almost a year and a half we tried to improve the situation with medication quinipril <br>and carvidilol main medications. For about six months I was a bit better but then went downhill and it was recommended I have a pacemaker put in. I have great doctors that I trust but I just don't know how I'm supposed to feel. My chest doesn't hurt and I don't have Afib, but I am constantly exhausted. It's been 3 months with the pacemaker. They had to change carvidilol to bisoprolol because my short term memory was so affected by carvidilol. I've gone from very active to struggling with exercise. <br><br>Bibi

I'm also sorry to hear of your troubles. I was diagnosed with hypertrophic cardiomyopathy at age 56. While it does sound as though you have dilated cardiomyopathy. I do believe that fatigue is something all of us with cardiomyopathy deal with and some days are better than others. Part of the fatigue may come from the medications, but part from the disease itself. I have a pacemaker/defibrulator. What type of device do you have?

Hello, I have HCM at 60 I had a myectomy 7 years ago after 6 years of doctors not knowing what was wrong with me. I could not walk very far without getting out of breath, finialy I found a Doctor that referred me to a doctor at Loma Linda Univ Redlands, Ca The best doctors. I'm able to walk fast and do not get tired. A Blessing !

Welcome to Connect @woodywood. I'm glad you joined our group. I think you might also be interested in our upcoming webinar:
Nov 2 - "Hypertrophic Cardiomyopathy and the Surgical Treatment Apical Myectomy" with Mayo Clinic cardiac experts Drs Schaff and Ommen You can sign up to take part here: http://mayocl.in/2dmWhdI

You might also be interested in meeting fellow HCM-ers in these discussions:
- Amiodarone for HCM http://mayocl.in/2dgLzqH
- Diagnosed with HOCM last year. May be time for surgery http://mayocl.in/2ef1nMc
- Not able to overcome my anxiety and FEAR related to my HCM http://mayocl.in/2ef3aRh

Woody, can you tell us a bit more about your recovery period? What activities did you include in your rehab? How long did it take to get back to walking like you can today?

@woodywood Congratulations on your recovery. I'm glad to hear that your are doing so much better. Please share, if you can, what was included in your recovery program. Was it meds or cardiac therapy? Best wishes!

I signed up thanks

My recovery was fast, I was in the hospital for 4 day. It was a challenge the first few weeks post op. I made sure I was up every morning to shower and dress to go for a short walk. I did this everyday because it felt good to get out of bed. I was given Norco for pain for the 1st month, within 6 Weeks I was riding the trails on my dirt Bike.

Have you seen a Hematologist to make sure your blood levels are good enough to support your heart if not I would consider it