HCM-ers: Introduce yourself or just say hi

@jachrist Hi JIm. I am having a septal myectomy. I am sure knowing your heart works better is a great relief. Do the doctor have any reason for the continued shortness of breath? Should they have maybe removed more tissue? That would be disappointing for me to still have breathing problems but I suppose I should be prepared for whatever happens as I still hope for the best. Did you have the Myectomy? Any advice? Jeanne

@bitsysmom24 Hello! Welcome to Connect! I see that this is your first post! There are several discussion threads related to Camzyos as "subheadings" in this HCM topic. I have never been on Camzyos, but our helpful "big-hearted colleagues" taking Camzyos may be able to give the helpful tips that you requested. I think it would be easiest to connect you with these people if you can type "mayo clinic connect camzyos" into your browser. You can then look at and then click on the link(s) after deciding which may get the tips you are looking for. May I suggest posting your question in the one or two that are current discussions, that is how we get responses. Of course, I hope that Camzyos works well for you!

Hello! I am soon to be starting on CAMZYOS for my Obstructive Hypertrophic Cardiomyopathy. I am trying this medication in lieu of Mitral Valve replacement surgery. Praying this will work for me. Any helpful tips? Thank you in advance.

Hello everyone. My name is Mike and Im 46yo. I was diagnosed with HCM almost 20 years ago. In that 20 years, I have been to 9 different cardiac groups including the Cleveland clinic. 3 Years ago, I had a defibrillator installed. April 2025 I had a septal myectomy with unbriding of the LAD artery. I still have HCM and dealing with heart failure but I have some life back after the myectomy.

I smiled as I read this!

@walkinggirl thanks so much for your reply and for the information. I’m actually excited about the possibility of decrease and possible elimination of symptoms while I’m still (relatively) young enough to enjoy an improved quality of life.

@emenich Hello Eddie and welcome to the HCM group in Connect!! You have a very important and valid question concerning post-surgical issues after a septal myectomy. Believe me when I write that all of us had exactly the same question you are asking. You are definitely not alone.

BTW, your symptoms and lead-up to this step are the exact the same story for me - active, asymptomatic, on Verapamil until one day, things changed.

From your question, I conclude that you have done much research and know that all surgery has risks. We are all different which means that there are patients who had absolutely no post-surgical issues and patients who had issues such as those you are concerned with.

It's too bad we have no crystal balls that we can foretell the future in our individual situation. I am glad that you are associated with a COE, I went to Mayo where the success rate for the surgery is 99+%. For Duke to be a COE, they must have much experience and an excellent success rate. I can share my post op experience which is unique to me. Once I left Mayo, I was under the care of my home cardiologist who trained at a place that is now a COE, but we have no such place here in the Capital District of NY.

I did develop deep vein thrombosis (DVT) in both legs, when I had pain, my cardiologist wasted no time in having me get an ultrasound to confirm and I was prescribed Eliquis immediately, effect noted within hours. Took it for 5 months. The other complication was that my lucky (yes!) heart started having electrical problems (arrythmias - dizziness and giddiness along with a couple of syncope) and I acquired Buddy, my ICD.

Yes, hearts experience trauma from surgery. But we are the beneficiaries of all the research done and the experience coming from our COE surgeons who are constantly learning how to perfect their skills and keep up with the latest research. My 2 complications occurred after surgery in July 2022, everything has been absolutely fine since then. This morning I walked 10K with my walking club, I go to the gym etc.

My fellow HCM mentor, Debra, started a thread a while back that I think you may "enjoy" reading to help you make a decision. https://connect.mayoclinic.org/discussion/what-i-learned-from-my-open-heart-surgery-part-1/ Another thread was written by a gentleman who had his where my cardiologist trained. https://connect.mayoclinic.org/discussion/my-septal-myectomy-decision-and-10-things-ive-learned-since/

To answer your question: NO, I not for a minute regretted having a septal myectomy at age almost 76. What would my life be now if I had not had it?

You are young (this almost 80-year-old considers 54 young) and have an exciting and rewarding life to look forward to in the years to come. You are healthy enough where your cardiologist suggests the surgery and expects a good outcome. If there are complications, you are in good COE hands, your team will deal with them if and when they may happen. Another thing is that I wanted to be here to share in the lives and milestones of people I care about and I wanted to show courage in facing a frightening and scary event. You will make the best decision for yourself, and I hope you will share with us!

Hello everyone. I am Eddie. I am 54 years old male. Diagnosed 10 years ago and basically asymptomatic until quite recently. I have been on verapamil then switched to metropolol and cardizen together. I was moderately active most of my life but lately not so much. Symptoms getting worse and gradient increases. I am considering septal myectomy at a COE (Duke) after meeting with cardiologist and determining Camzyos not a good match.
It seems there’s a lot of post-surgical issues Does anyone regret septal myectomy to the point they wish they hadn’t done it?

@giolig68 Hello @giolig68! I used the magic of computers to translate your Italian message! "Hello everyone from Italy, I’ve been taking Camzyos 2.5mg for 28 days and it seems to be working very well so far, I’ll update you later." Yes, keep us updated, those who are perscribed Camzyos are interested (I never took it). There are several discussions about Camzyos here on Connect, you can use your computer to translate the items into Italian. Here are two of the many discussion threads: https://www.mayoclinic.org/drugs-supplements/mavacamten-oral-route/description/drg-20534017 and https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/. By the way, I love visiting Italy! Ciao!

salve a tutti da l'Italia, prendo camzyos 2.5mg da 28 giorni sembra che funziona molto bene per ora, vi aggiorno in seguito.