Has anyone had surgery for Apical Hypertrophic Cardiomyopathy

Debra's case and mine are similar in many ways, my 2 year anniversary of my septal myectomy is coming up on the 21st of this month. I was told that my life span would not be shortened. I am elated, dreitmey, that Dr Schaff performed your surgery, he did mine as well!! You are probably taking the best care of yourself for the most positive long-term outcome possible.

Dr Dearani is the best! You could not have been in better care @dbrima. And your story is the perfect example of how important a Center of Excellence is for a precision surgery like a septal myectomy. The best thing you can do is research and find out how many a facility has done, even if they call themselves a Center of Excellence or a Heart Institute.
You were right all along, you knew you didn't feel well. Thank goodness you are in a better place now. I hope you are doing better. And you are connected to the Mayo Clinic now, which is a blessing!

Wow. That is a lot to process @dreitmey. I would like to introduce you to @danab, he is a fellow mentor and a heart transplant survivor. He had some real struggles just as you are having.
Risks are worth taking sometimes but you have to feel good about taking them!
Are you near a Mayo Clinic? AZ, MN, FL?

Hi @dreitmey I see you have been suggested that Heart Transplant may be an option. I had mine now 6 years ago and honestly my life is completely normal In most respects. I didn't have most of the heart problems you had, mine were in the electrical department. My ejection factor was at its lowest at 5 % back when a virus cause fluid to collect around my heart and lungs. This caused my heart to enlarged which brought on the arrhythmia problems. My EF (CHF) did improve to about 45% prior to transplant but like you the damage was done. It was difficult to keep my rhythm under control which ended up with the transplant. But I would not trade my life now with what I was dealing with the 10 years prior to transplant. Except for things like being careful about viruses and skin cancer, which means even in Arizona in the summer I have to wear long sleeves, but even that they have great UV protection clothes that are really cool. The recovery took about a full year with the worst part being the first 6 weeks. It's a distant memory now. I golf, hike, go to all the things I enjoy and no more weakness or worry about when my heart would have another arrhythmia. I have met many people who are 25 year plus transplant recipients and doing great. They say the average is 16-19 years but I'm pushing for the 25-30 ones. I also know of one person who had theirs for 25 years and got another one. So I hope that gives you some confidence in the idea. Please ask any questions you like. I've been thru the whole process here at Mayo Arizona. Some great doctors on the team here also. I would not trade them with anyone.
Blessings

My cardiologist just told me I have the Apical HCM type. I wasn't aware of that until now. How does it differ from HCM and at what point do you need to look into the septal myectomy surgery? I've been having symptoms recently, and he scheduled me for a stress-echo next month to take a look.

I beg you not to go through my experience. I live in Houston and Texas Heart is ranked 17th in country for heart and Methodist is ranked 14th. I had a septal myectomy in Houston, even though my surgeon knew I had apical problem as well. Now I am at Mayo Clinic, less than a year later and they took out 10x the amount. If you Google apical myectomy, it only appears at mayo or Cleveland Clinic. When I could barely breathe, several months after the septal, I was told no one in Houston would touch me. It has not been done there. Here, with Dr. Dearani, he says that 1 in 5 of his patients need this very specialized treatment.

https://connect.mayoclinic.org/comment/1104597/
I hope you read this @metta, it from a very experienced source. It really DOES MATTER where you go for treatment. HCM and HOCM are one thing, and Apical HCM is quite another. Are you close to Mayo Rochester? I had to fly across the USA to get there, but it saved my life!

I see I didn’t answer well. The septal myectomy they go in from the top of left ventricle. The apical, they go from bottom. Because it is very complicated going in from the bottom, lots of cords etc, doctors are not trained to do that. They are nervous. Mine in Houston is very well- known, but had never gone in from the bottom. Unfortunately, he didn’t know how but I feel he should have known that there were a few doctors that could. Instead, I have gone through open heart twice. 34 years old. I can’t believe this.

Hello,
I wonder about the anti-rejection medications following open heart surgery. I thought I saw some stats about heart transplants that 20-25% of patients die in the first year. I have an upcoming appointment for a follow-up with an echo. My EF has been fine - 60%-70% range - so far. Family and friends asked I reconsider the heart transplant option.

So sorry I took a while to get back to you. I myself am in the role of care giver to my wife who just had a full hip replacement. So in answer to what you heard I never was told that. Ive met quite a few people who have received them both on here and in person. But I can't say enough about the expertise of the Mayo doctors. But like any major surgery there are always chances of unforeseen problems during and after. For me personally I was pretty sick and I in my own thoughts knew if I (and i stress for myself only) was facing death without one. So with my faith I was ready for what ever happen. Each person needs to decide that for themselves.
As for the percentage this website has lots of data on that. I thing the figure you read was a bit high. Just glancing thru the web site I saw figures from 5-10 % and under lots of different reasons. Here is the site
https://www.srtr.org/
Hopefully this helps in making your decision. That site also should some of the most successful Transplant Hospitals so that may hepl in you decision also. When I got mine the survival rate was between 92-95 % but that was 6 years ago and it may have changed since then.