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Posts (10)

Jan 2, 2017 · Norpace` in Hypertrophic Cardiomyopathy (HCM)

I live in Taiwan where there is a lack of info on HCM and lack of medical resources for HCM patients. However, Taiwan has a medical center which leads the world in arrhythmia treatment, especially for Afib. So I underwent a trans catheter RF ablation procedure in Taiwan before I ventured out to Mayo for apical myectomy. I had both Afib and VT at that time, and my EP was able to take care of both in a 4 hr procedure. I have been taking anti arrhythmia drug called Multaq (Dronedarone) and beta blocker Concor (bisoprolol), plus anti coagulant Xarelto, even to now (15 months post apical myectomy). Since my ablation procedure 2 years ago, I have not been found to have recurrence of Afib or VT. I do not have an ICD implanted and have never been put on Norpace.
@jhoffmanj, sorry I don’t know if I am being helpful to you at all. Perhaps you can ask your Dr. to change your medication to Multaq (which, from what I understand, also has side effects, but it works on me perfectly)

Nov 28, 2016 · Myectomy with valve replacement in Hypertrophic Cardiomyopathy (HCM)

You are in great hands! Drs. Nishimura and Schaff are AMAZING doctors!

Nov 9, 2016 · What is the recovery like following septal myectomy? in Hypertrophic Cardiomyopathy (HCM)

Hi Dave, congratulations on a successful surgery! Just like what you said, walking really helps in the post op recovery process. I had my apical myectomy 13 months ago and by now I can exercise for over an hour (moderate aerobic exercise) 3-5 days a week. The only thing I would add to what you have been doing is, consider doing cardiac rehab at a hospital or rehab center close to you. Since I am an international patient (I am from Taipei, Taiwan), I waited for 7 weeks post op to take a 17 hour flight home (even though I didn’t have to wait for that long to travel on an plane safely). While staying in Rochester, I went to Mayo’s cardiac rehab center almost everyday for 5-6 weeks. I started my first rehab session around 12 days after surgery. The nurses and physiologists at Mayo’s rehab center were really nice and helpful (always cheerful and encouraging), and spending an hour there everyday really helped get myself back in the swing of things. I literally started out by only being able to do 10-15 min of exercise (treadmill and bike), but every time I went, I made incremental improvement in terms of the time and intensity of my exercise program. By the time I was leaving Rochester, I was able to do 50 min of mild aerobic exercise. Aside from doing cardiac rehab, everyday I would walk for at least 20-40 min and do a bit of household chores. Doing those range motions also helped quite a bit in terms of reducing the tightness on my chest and around the incision line. Besides all this, I thought getting enough sleep and eating balanced meals were equally important. I waited til maybe 7 months post surgery (until my sternum was stable) to really have exertion on my upper body. At times I felt there was always something weird on my upper body, but eventually everything healed and became ‘normal’. We just have to trust that our bodies have magical powers that make everything go back to its normal state. I wish you a speedy recovery!
— Vivian

Nov 9, 2016 · HCM-ers: Introduce yourself or just say hi in Hypertrophic Cardiomyopathy (HCM)

@eelnaloblob18, depending on where your thickened muscle is (i.e. septal, mid-ventricle, apical), the myectomy you need might require different techniques. For instance, I have apical HCM with mid-ventricular obstruction and apical aneurysm. The procedure I underwent was Apical Myectomy, which took a trans-apical approach. This trans-apical myectomy is different from the traditional septal myectomy. Your doctors should determine what kind of myectomy you need. I believe a few COEs can all do septal myectomy quite well. But if ultimately what you need is an Apical Myectomy, you have to go to Mayo Clinic in Rochester. The technique for this procedure was invented by Dr. Hartzell Schaff at Mayo Clinic. I do not believe other centers can do trans-apical myectomy as well as Mayo Clinc can. Something for you to consider. Hope everything works out well for you.

Nov 2, 2016 · Video Q&A about Hypertrophic Cardiomyopathy & Surgical Treatment Apical Myectomy in Hypertrophic Cardiomyopathy (HCM)

Thank you Dr. Schaff and Dr. Ommen, this was very informative and educational. Mayo Clinic is the best!

Nov 2, 2016 · Apical Cardiomyopathy in Hypertrophic Cardiomyopathy (HCM)

I have apical HCM but I am a HOCM with mid-ventricular obstruction. I also had an apical aneurysm which was resected during my apical myectomy. I am not sure if it is true to say that apical HCMers do not have obstruction.

Nov 2, 2016 · Video Q&A about Hypertrophic Cardiomyopathy & Surgical Treatment Apical Myectomy in Hypertrophic Cardiomyopathy (HCM)

how do you resect the heart muscle without leaving scars? my doctors back home all tell my once there are scars in my muscle, I would have malignant arrhythmia.

Oct 31, 2016 · HCM-ers: Introduce yourself or just say hi in Hypertrophic Cardiomyopathy (HCM)

@mistymopps3 from what I understand, apical variant happens more in East Asians. I am Chinese. Within the Asian population, about 20-25% of all HCMers have the apical variant. Whereas in the US and Europe, only 1-2% of HCMers are apical. I am HOCM with mid ventricular obstruction and an apical aneurysm. This is probably the worst kind of HCM one can have.