← Return to HCM-ers: Introduce yourself or just say hi
DiscussionHCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: Nov 28 11:57am | Replies (877)Comment receiving replies
Replies to "Hi, I am newly diagnosed with HOCM after physician heard a murmur at routine checkup. Awaiting..."
ajand ...all you described could have been me. I'm surprised your Dr diagnosed you with HOCM. A murmur alone doesn't tell them that. It wasn't until my cardiologist did an echo (among other tests) and found the the thickened heart muscle that he said I had HOCM. We tried medicines that didn't really help so the end of Aug I had a Septal Myectomy. Two different doctors here told me not to have the surgery anywhere except the Mayo in Rochester Mn which is where I had it. Tests had to be repeated there even tho they had everything from here...just making sure of everything I guess. I could never live in Mn because of your weather but I think people there are so blessed to have Mayo at their fingertips.
My husband had an SM last October at Rochester, 6 months prior to surgery he was on max ( toxic) amounts of meds and they had stopped fully managing his symptoms the side effects were increasing. Apart from all this he was in good physical shape, no diabetes etc. soooo the surgery was amazing he recovered quickly and was back to “normal” still has cardiomyopathy but no obstruction. He/we were beyond impressed with everything about our experience at Mayo.
Welcome to Connect, @ajand.
I’m tagging @archer @rrowner2 @falconfly as they’ve shared their experiences about medications in this discussion:
– MEDS FOR HCM - DOSAGE https://connect.mayoclinic.org/discussion/meds-for-hcm-dosage/
I also thought you might be interested in reading about a new drug trial which has shown promising results for HCM/HOCM patients:
– Mavacamten Treatment for Obstructive Hypertrophic Cardiomyopathy: A Clinical Trial.
– https://www.biospace.com/article/clinical-trial-results-from-myokardia-s-phase-2-pioneer-hcm-study-of-mavacamten-published-in-the-annals-of-internal-medicine/
Connect’s Alumna Mentor, @cynaburst had mentioned that, "Losartan is not a medication that is commonly used in HCM.” May I ask if you are seeing an HCM specialist?