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Posts (235)

Jun 9, 2019 · Sharp quick pains post myectomy - Any thoughts? in Hypertrophic Cardiomyopathy (HCM)

It is really hard to know what is causing your pain. I suggest calling your surgeon's service. Where did you have your surgery? Obviously some pain after surgery is too be expected. But, if you have any other symptoms – fever, shortness of breath, difficulty breathing, you should call your doctor or, depending on the severity, go to the ER. Always call if in doubt.

Feb 3, 2019 · Travelogue about a visit to the HCM Clinic at Mayo Clinic - Rochester in Hypertrophic Cardiomyopathy (HCM)

Hi Everyone,

I just published this travelogue blog entry about my recent visit to Mayo Clinic’s hypertrophic cardiomyopathy clinic in Rochester. I hope that you find it to be informative. In my, admittedly biased opinion, it is the best treatment for HCM in the world.


Nov 23, 2018 · MEDS FOR HCM - DOSAGE in Hypertrophic Cardiomyopathy (HCM)

Do you see a HCM specialist? Losartan is not a medication that is commonly used in HCM. Many people take Toprol (I take the same amount you do) but the Losartan is unusual and unless prescribed by a doctor with a specialty in HCM, I would wonder about taking it. I travel to Mayo Clinic from California to see a top HCM specialist due to their familiarity with the disease. Many if not most cardiologists are not that well versed in the treatment of HCM.

Nov 15, 2018 · HCM-ers: Introduce yourself or just say hi in Hypertrophic Cardiomyopathy (HCM)

When to have surgery is really an individual decision. I tried meds for a few years and my symptoms were getting worse and the side effects were more and more bothersome. I made the decision because I felt my quality of life had declined to the point where I was willing to take the risk of surgery. I think that is what you have to think about. At what point do you feel like you can't go on with all the drugs and will your situation improve substantially after surgery. For example, it may allow you to better control your blood pressure and take some stress off your kidneys. You should discuss the pros and cons with your doctor.

Nov 4, 2018 · What is the recovery like following septal myectomy? in Hypertrophic Cardiomyopathy (HCM)

Hi @melthomas. I had a myectomy over 12 years ago and I was also very concerned about waking up on the ventilator. It turned out to be a non-event. I woke up and wrote notes to the nurse, and then they removed it pretty much immediately after I woke up. As far as preparing, the best thing you can do is to stay in shape. Try to walk every day, if you can. I have two resources to share with you as well. I have a blog about HCM and I have a page to help people prepare for myectomy: https://hcmbeat.com/resources/resources-for-patients-about-myectomy/. Also, I wrote a blog about my experience about my own myectomy: http://www.cynthiassummeradventure.blogspot.com

Wishing you the best. If you are having surgery at Mayo you are in the best hands.

Oct 20, 2018 · What is cardiomyopathy? Can you explain systolic and diastolic cardiomyopathy? in Hypertrophic Cardiomyopathy (HCM)

I don’t know the answer to your question. Have you asked your doctor? Hypertrophic cardiomyopathy is generally caused by a genetic mutation though they have recently identified another subset which is not genetic and is identified later. Your Cardiomyopathy sounds like it may be a different type.