My septal myectomy decision, and 10 things I've learned since.

I also have HCM. I’m a 73 year old female and my cardiologist recommended Camzyos. After researching the drug and how some people might get heart failure while taking it, I chose to have the septal myectomy. My surgery is September 26 at Mayo in Rochester, Minnesota.
I’ve read that HCM isn’t curable, but does anyone know how long the surgery is good for. Does the thickening grow back?
I’ve been trying to walk about four- five miles a day to be a strong as I can be prior to surgery. I’m hoping this will help with my recovery.

I was almost 76 when I had a septal myectomy at Mayo. You will be in good hands!!!! As @baystater101 stated, fitness counts. You have the walking underway! You may want to add core strength exercises such as planks (with doctor's OK), sitting to standing, and some strength and flexibility exercises. That will go a long way with the OT and PT you will be doing everyday starting the day after surgery. During the pre-op interview with my surgeon, Dr Schaff, I was asked if I wanted genetic counseling (yes, of course). Unfortunately, my errant HCM gene(s) was not found, and blood relatives are having periodic echocardiograms. If your gene can be found, relatives can be tested and action taken accordingly.

mbi, good luck with your upcoming surgery. If you're like me, now that you've made the decision to undergo surgery, you want the date to hurry up and get here. This is a good time to practice cultivating patience and equanimity, traits that will serve you well during what can on occasion be a tumultuous post-op period.

Your plan to be in the best shape possible pre-surgeey is a good one; it will definitely help you in the days and weeks post-surgery. I am your age, and almost 4 weeks post-surgery, and am finding my pre-surgery overall fitness level is setving me well during this recovery period.

My understanding is that the septal myectomy is consudered to be a "one-and-done" operation. For someone your (and my) age, I think it is safe to assert that the septum does not grow back.

Having said that, in my self-education over the past year or so I came across a few references suggesting that there are cases where the septum has, in fact, grown back, but if my understanding is correct this is rare, and has happened where the patient was relatively young when their myectomy took place, and/or there were questions whether the first myectomy was procedurally up to snuff. With your surgery set for the Mayo Clinic, you have little to worry about with regard to the experience and technical expertise of your surgical team.

You're right that HCM is not curable, but, like me, you have chosen the treatment plan that directly addresses what for you (and me) is the defining feature of the disease -- the overgrown septum -- so you (and I) should have every confidence that we will remain symptom free after the recovery period.

Thank you! I did the recommended genetic testing because I have three daughters. I didn’t have the gene. So I’m wondering how I got it? And if the septal myectomy will permanently take care of it.

Thank you! I did the recommended genetic testing because I have three daughters. I didn’t have the gene. So I’m wondering how I got it? And if the septal myectomy will permanently take care of it.

@baystater101 is absolutely correct about many unknown HCM genes - HCM is a genetic condition. Do you know of other family members with heart issues? My dad was never diagnosed with anything other than a mitral valve murmur but had the out-of-breath symptoms. I had 123 of the known (in 2022) tested and all were OK and was told that I should check back in 5 years. You may wish to read: https://www.jpost.com/health-and-wellness/article-852473 I passed this article on to Lauren, my Mayo genetic counselor, who is now researching the findings. Meanwhile, please discuss with your cardiologist about echocardiograms for your daughters. My son is to have an echo every 5 years and teenaged grandson every two. So far, all good!

mbi, good luck with your upcoming surgery. If you're like me, now that you've made the decision to undergo surgery, you want the date to hurry up and get here. This is a good time to practice cultivating patience and equanimity, traits that will serve you well during what can on occasion be a tumultuous post-op period.

Your plan to be in the best shape possible pre-surgeey is a good one; it will definitely help you in the days and weeks post-surgery. I am your age, and almost 4 weeks post-surgery, and am finding my pre-surgery overall fitness level is setving me well during this recovery period.

My understanding is that the septal myectomy is consudered to be a "one-and-done" operation. For someone your (and my) age, I think it is safe to assert that the septum does not grow back.

Having said that, in my self-education over the past year or so I came across a few references suggesting that there are cases where the septum has, in fact, grown back, but if my understanding is correct this is rare, and has happened where the patient was relatively young when their myectomy took place, and/or there were questions whether the first myectomy was procedurally up to snuff. With your surgery set for the Mayo Clinic, you have little to worry about with regard to the experience and technical expertise of your surgical team.

You're right that HCM is not curable, but, like me, you have chosen the treatment plan that directly addresses what for you (and me) is the defining feature of the disease -- the overgrown septum -- so you (and I) should have every confidence that we will remain symptom free after the recovery period.