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

I had a septal myectomy, with related mitral valve repair, on July 24, 2025, 23 days ago. I’ll relate below some of what I learned from the surgery.

What follows is a lengthy post, apparently too long for one post on this site, so I’m breaking it into 3 posts, which I hope will work.

This is post 2 of 3.

Here are 10 things I’ve learned from my surgery (items 1 through 5 are in this post; items 6 through 10 will be in post 3 of 3):

1. It’s only 23 days since the septal myectomy and mitral valve repair, and I am still in the recovery period, with occasional lightheadedness, which my providers assure me is entirely normal. So, it is too early to tell whether upon full recovery I will achieve the goal that I am expecting: the ability to regain pre-symptomatic levels of activity, without worry that SOB or other HOCM symptoms will return. So far, each day gets better (not without minor setbacks along the way), and I am confident that surgery was the right choice for me.

2. Much of what I learned re open-heart surgery I actually pre-learned from this Mayo Clinic Connect site and from the invaluable HCM Association (www.4hcm.org, which I learned about and joined last fall). Among many other resources, the HCMA has a “what to expect” zoom class for folks who are scheduled for a myectomy. Several of the “insider tips” mentioned in that class were spot on, in the sense that when certain uncomfortable things happened in the cardiac ICU, even in my then-distressed state I recalled that “OK, I heard this might happen.”

3. I have learned that I turned out to be one of the five to ten percent of septal myectomy patients for whom a pacemaker would be required after surgery, even though they did not need a pacemaker before surgery.

Apparently everyone, after a septal myectomy, wakes up wired to an external pacemaker that sits on or near the hospital bed. At some point after the patient wakes up in the cardiac ICU, the pacemaker is turned down, and the team looks to see whether the heart resumes normal rhythms. If it does not, they turn the external pacemaker back on, and keep checking periodically for a couple of days. In my case, due to what’s called “heart block,” it became apparent that my heart was not going to beat more than 40 beats per minute on its own, so four days after my septal myectomy a pacemaker was installed in my upper left chest and wired to the heart.

4. In an even more elite minority of patients (well under 1 percent, I believe), there can be a problem a couple of days post op when they go to remove the two flexible plastic drainage tubes that are left in the chest near the newly stitched-up sternum.

I hit the lottery on this complication, as well. The first tube came out quickly and easily, while I was in my bed in the cardiac ICU (no need to be taken to another spot for this routine procedure). However, the second tube was “stuck” and it would be a bit more complicated to take it out, depending on the precise reason why it would not simply yield to being pulled out.

So four days post-open heart surgery, while one surgical team installed my pacemaker, a second team worked on removing the tube. While a “simple” pacemaker installation might require just a local anesthetic, I had to undergo full anesthesia for the second time in four days, in case the tube-removal team had to reopen my chest to get the tube out. It turned out the stuck tube was caused by the fact that a stitch closing up my chest had caught on a small part of the flexible tubing. They were able to remove the tube without opening me up again.

5. We knew from pre-surgery testing that my heart has significant scarring caused by a 73-year long lifetime of HCM. I learned post-surgery that my surgeon recommended that since it turned out I needed a pacemaker (see above), I should have a defibrillator (ICD) installed, to lessen the chance of SCD (sudden cardiac death).

So, my new pacemaker is also an ICD. Same machine, but with extra wiring to the heart to perform the dual functions.

Bonus: the pacemaker is bluetoothed to a transponder plugged in near where I sleep, and every night at about 2 a.m. the data of how my heart acted over the preceding 24 hours is sent to some computer somewhere, and if anomalous events have occurred, a human is alerted to get in touch with me to take corrective action (which could be an instruction to see my cardiologist soon, or (less likely), “get yourself to an emergency room” or even “call 911 immediately”).

In my case (so far) the pacemaker detected atrial fibrillation on about August 5 (five days after I got home), so I was told to fill a prescription for an anticoagulant (Eliquis) to lessen the possibility of a blood clot that could cause a stroke. Apparently a-fib is fairly common after open-heart surgery, but it usually happens while the patient is still in the hospital. In any event, if, as seems likely in my case, the a-fib was caused by the interruption of the heart’s electrical system during the surgery, the a-fib (usually) will clear up on its own and the Eliquis will be discontinued after a month or two. On August 14 (21 days post-surgery), I had a follow-up visit with a member of the pacemaker/ICD installer team, who told me the machine continues to report episodes of a-fib (one as long as 10 hours), yet I have no sensation of an irregular heartbeat and I am instructed to carry on with my post-op walking regime and other (limited) activities. I walked a couple of miles yesterday, over a few sessions in my backyard and my first post-op walk out on our suburban streets, as my confidence has grown and lightheadedness has waned.

End of post 2. One more post to follow.

I had a septal myectomy, with related mitral valve repair, on July 24, 2025, 23 days ago. I’ll relate below some of what I learned from the surgery.

What follows is a lengthy post, apparently too long for one post on this site, so I’m breaking it into 3 posts, which I hope will work.

This is post 3 of 3.

Here are 10 things I’ve learned from my surgery (items 6 though 10 appear in this post; items 1 through 5 are listed in post 2 of 3):

6. I learned first-hand that days of sleep deprivation post-op (including seemingly infinite hours of barely skimming the surface of sleep) can lead to some strange mental gyrations, and it helps to remind oneself that this, too, shall pass. In my case, first-line sleep aids did not seem to help much and I resisted trying anything stronger. One night while still in the hospital I agreed to Ativan, and while the next day I thought it had helped me finally have four or five hours of continuous sleep, I learned that it had, in fact, caused a precipitous drop in my blood pressure, and there was a period where I was delirious and the ICU night nurse had to sit with me for hours, trying to help return me to an even keel.

That was then. On August 13, at my post-op visit with my septal myectomy surgeon and his team, I told them of my continuing trouble getting to sleep (probably due to anxiety), and after discussion it was decided I should try a low dose of lorazepam, which I had used for a while some years ago to ease anxiety. Surprise! (to me), lorazepam is the generic name for Ativan. The docs were not too concerned that I had had that blood-pressure drop incident in the hospital, so I tried the lorazepam the night of Aug. 13 and Aug. 14, and it helped me drift off to sleep. I did not use it last night, and slept well.

BTW sleep deprivation can contribute to atrial fibrillation, so as I return to my normal sleep pattern that may help reduce my incidence of a-fib.

7. I learned that for me, the post-op chest pain has been minimal. With a little practice, one learns to hug the heart pillow tightly to the chest when a cough cannot be avoided. The pillow absorbs the vibrations and keeps the pain from radiating in the chest. After about 18 or 20 days post-op I found I can cough or clear my throat without the pillow and without much pain (but I generally keep the pillow within reach “just in case”). The prescribed 1000 mg acetaminophen (Tylenol) has generally been enough to dull my post-op pain, and I found after I arrived home that I used it less and less (once or twice a day now).

Also, my appetite has been strong all along. I learned for the first couple of weeks post-op that I needed to eat slowly and mindfully to minimize any coughing or other agitation that might be caused by a spicy bite or an oversized swallow (and again, having the pillow at-the-ready helped absorb any discomfort).

8. I have been practicing mindfulness-based stress reduction (MBSR) for a good number of years, initially as a scheduled daily practice, but now more sporadically (although I consciously practice some MBSR techniques routinely in daily living, even if I don’t regularly set aside a specified period for meditation).

I found that in the initial days after surgery, probably the first 10 days or so, I could not calm down my mind enough to focus on the breath, which is fundamental to the practice of MBSR. Eventually my agita (anxiety/agitation) eased enough to allow me to focus.

For more on MBSR I highly recommend you check out Jon Kabat-Zinn, who has been spreading the word on MBSR since at least 1978 when he started a meditation program for patients and others at UMass Memorial Medical Center, a program that has since been replicated nation- and world-wide. He lays out the theory and the fundamentals of the practice in his book “Full Catastrophe Living.”

9. I learned that the pre-op instruction to plan not to return to work for at least 4 weeks should be taken to heart (so to speak), even by a semi-retired self-employed work-at-home desk jockey like me. You need to focus on taking care of yourself in recovery, walking more and more, resting or sleeping when able, and not dealing with the stress of handling work calls and deadlines. I did have to handle a couple of work tasks over the past two weeks because I had not sufficiently pre-planned a full four-week break from work, but my advice is to avoid work-related tasks for four weeks if at all possible.

10. While no doubt all nurses are angels, I learned that cardiac ICU nursing teams deserve to be ranked as a special order of seraphim, dealing as they must will all manner of agitated, sometimes disoriented, sometimes pain-wracked (not me), sometimes just plain squirrely patients. The varying individuals and teams who were on duty during my inpatient post-op week universally did a great job, each in their own way, to help ease my and other patients’ discomfort and guide patients toward their next steps (figuratively as well as literally – getting patients to take those first few post-op steps in the hallway of the cardiac ICU).

I’m sure I learned more, with more to come, but I’ll stop here for now. It been helpful to me to sit down (and focus and reflect) and write the above; I hope readers find some of it helpful as well.

What a lovely post-septal myectomy recap @baystater101 .
I am not sure if I missed this...but where was your open heart surgery performed?

You captured your experience with clear and concise prose, and this is bound to help others who have not yet gone through the open heart journey.
It sounds like you hit a few speed bumps, but overcame them with a tenacious attitude and are ready to tackle whatever comes next.
My prayer for you is continued healing, both physically and emotionally. Open heart surgery has an impact on more than just your body...but one thing is for certain...we are stronger, tougher, more resilient than we every knew!
Good advice about going back to work too soon. You really do need time to recover from this intense surgery.
Thank you for sharing your story.

I thoroughly enjoyed reading about your experience! Your clear writing and descriptions were positive and easy to understand and those going through that terrifying pre-op stage may have their anxiety level lower a notch or two. In so many ways all of our experiences are basically alike, yet the events that are outcomes of our individual differences are all good to read about. It reminds us that we are each a unique person and a particular thing that happen to someone puts that "thing" in the realm of knowledge for both our health care providers and those who may experience it in the future. I, too, had an ICD installed, mine was 4 months after my septal myectomy because of dizziness and giddiness that was caused by arrythmias when I was moving around; I named it Buddy, it took a while to figure out the cause. Your association with HCMA was valuable - I never heard of the organization or this blog till over a year after surgery, you were well prepared! Wishing you continued happy days ahead. BTW, yes, writing as you did is a part of your recovery - I, too, have an essay which is 16 pages long, read by many including my home cardiologist. Did you have your surgery in Boston (baystater is a clue)? My cardiologist recommended a place there and the Mayo Clinic - I went to Mayo 3 years ago.

My septal myectomy and mitral valve repair surgery was performed at Beth Israel Deaconess Medical Center in Boston (5 miles from my home), by Dr. Hassan Rastegar. I am informed that in his long career Dr. R has performed as many or more septal myectomies than any other surgeon in the U.S.

A few months ago an HCMA patient advocate (a retired cardiac surgical nurse from Boston, I believe), assured me that I could do no better than Dr. R, and he also received kudos from my second-opinion cardiologist from across the street (literally) at Boston's Brigham and Women's Hospital.

As I said in my post, the post-op nursing teams at BIDMC were also stellar.

You're right, walkinggirl, Baystater is a clue, and I live just outside Boston. The surgery was at the highly regarded Beth Israel Deaconess Medical Center (for a smallish city, Boston has a wealth of leading medical institutions).

Thank you for your compliments and for the supportive, informative comments you so often post at Mayo Clinic Connect.

I wonder if that would have been the place where I would have been sent had I not chosen Mayo (somewhere in Boston was suggested). My home cardiologist trained in Boston, but I do not know the specific details. I knew that Mayo was an excellent place for heart care, so I chose that place using the same criteria you used for your choice. I was unaware over 3 years ago that there was a COE in Boston. I live about 35 miles north of Albany, that would be a 3.5-hour ride. Nevertheless, I am extremely happy with how it all went with me, others reading these comments will be assured that the future looks VERY promising when it may be time to have surgery at a COE.

If I am reading the HCMA website correctly, there are just two HCMA-recognized COEs in Massachusetts: (1) Brigham and Women's Hospital, and (2) Lahey Hospital and Medical Center.

So where I went, the Beth Israel Deaconess Medical Center, is not on the list. But as I mentioned, an HCMA advisor (and others) assured me I'd be in excellent hands with Dr. Rastegar at the BIDMC.

(Confusingly, the Lahey is also known as Beth Israel Lahey, so there is some corporate connection between BIDMC and the Lahey, but they are separate institutions with separate campuses and medical teams.)

(And for those trying to keep track, Brigham and Women's is part of the Massachusetts General Hospital Brigham and Women's conglomerate, which also includes a growing number of smaller regional hospitals.)

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.

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.