Fifteen Year Anniversary of Myectomy!

Today it has been 15 years since my septal myectomy at Mayo Clinic!  

 
It’s hard to believe, and lots has happened since my open heart surgery, but I wanted to post today to let everyone know that it was totally worth it. The best decision I ever made.  I have been working full time since the surgery, have been working on this blog and have a busy life as a wife, mother and daughter. 
 
 
Of course the COVID pandemic has been challenging for all of us, but I am grateful for the blessing of the great medical care that has allowed me to continue living my best possible life, even if it is currently limited by the circumstances.
 
If you are on the fence wondering if this surgery is worth it, I am here to tell you it absolutely was.  You can see a collection of resources I gathered about myectomy.  Also, if you are wondering what it is like to visit a place like Mayo Clinic, I wrote a travelogue here.
 
And here are some words from my Mayo Clinic cardiologist, Dr. Steve Ommen, about the role of a specialty center in HCM care. Or you can read a recent interview with Dr. Ommen on Medscape here.
 
Meanwhile, wishing you all good health!

Mayo Clinic’s Dr. Steve Ommen Talks About HCM Care

Watch the video or read the transcript of Dr. Steve Ommen’s recent interview on Medscape.

In this interview, he discusses the recent AHA/ACC treatment guidelines for hypertrophic cardiomyopathy (HCM), his thoughts about the new HCM drug mavacamten, and the importance of collaboration between your local care team and the team at a HCM specialty center.

Experts Put Mavacamten in Perspective

An article published today in Circulation by HCM experts Dr. Steve Ommen of Mayo Clinic and Dr. Martin Maron of Tufts Medical Center, discusses the prospective use of mavacamten as a treatment for obstructive hypertrophic cardiomyopathy. The doctors conclude that while mavacamten (assuming that it is FDA approved in early 2022) will have its place in the HCM tool kit, it should not replace septal reduction therapy for severe HOCM.

In particular, the article points out that the EXPLORER-HCM study showed modest improvements in symptoms and functional capacity (peak V02), comparable to those seen in the RESET-HCM study, which highlighted the ability of regular exercise to improve functional status in HCM.  

The article notes that there has not yet been a study directly comparing mavacamten with septal reduction therapies such as septal myectomy and alcohol septal reduction. The VALOR-HCM study, which is currently recruiting, will look at these therapies compared head-to-head.  It is noteworthy that the majority of patients in the EXPLORER trial had Class II heart failure and were not the more severely compromised Class III and IV patients most likely to benefit from myectomy or alcohol septal ablation.

This article compared historical myectomy data against the findings from EXPLORER, concluding that septal myectomy produces a better result for patients, with gradients abolished in more than 95% of patients compared to only 50% of patients with mavacamten.  And, the article points out that 25% of the patients in the EXPLORER trial continued to have left ventricular outflow tract gradients greater than or equal to 50mmHg, which still qualified them for septal reduction therapy.

Maron and Ommen’s take-home message is that mavacamten will be a welcome addition to the arsenal of HCM drugs and is potentially suitable for patients who do not have severe symptoms, who do not have access to septal reduction at a HCM specialty center, or who wish to avoid more invasive therapies.  It also may be used in the same way as disopyramide, to defer surgery by improving symptoms to a tolerable level.

Lastly, this article points out that there is a need for longer term follow up to study the effects of cardiac remodeling caused by mavacamten.

While it is wonderful to have options, it is important that patients and their medical team consider all available information, including potential benefit and risk, before moving forward with medical therapy. 

More Bad News for Women with HCM

A recent retrospective study by researchers using data from the SHaRe Registry found that women with hypertrophic cardiomyopathy have an increased risk of death and/or severe heart failure symptoms when compared to their male counterparts.  This study also found that women tended to be older when diagnosed with HCM than men. 

This study echoes a 2017 study from Mayo Clinic with similar findings.

Editor’s Note:  It is clear that serious research into gender differences in HCM is needed. And, it is vitally important that women with HCM be persistent and diligent in obtaining expert care for their HCM. Their lives depend on it!

 

Could Artificial Intelligence Be Useful for HCM Screening?

A study by researchers from Mayo Clinic published this week in the Journal of the American College of Cardiology found that an artificial intelligence algorithm was able to detect hypertrophic cardiomyopathy, commonly known as HCM, from EKG results with impressive accuracy, particularly among younger patients.

In order to “teach” the computer, the researchers used digital 12-lead ECGs from 2,448 patients with HCM along with 51,153 age- and sex-matched controls. The technology was then tested on 612 HCM patients and 12,788 controls.

The findings showed that the technology was able to identify HCM in a high number of cases, even where the EKG appeared “normal” to the human eye.

The researchers believe that this technology, when refined, may prove to be an efficient tool for HCM screening in the future. The team plans to continue testing the technology in greater subject samples in order to further refine its performance.

See also:

Mayo Clinic News Network

Health Analytics

 

Visiting Mayo Clinic

I had open heart surgery (a septal myectomy) to treat my hypertrophic cardiomyopathy in 2006.  I went back to Mayo twice for the two years following the surgery, but after that I hadn’t felt the need to return since I was regularly following up with my local cardiologist.  In April of 2018, it had been almost ten years since I had been back to Rochester.  So, I decided it was time to take a trip and make sure that all was in order.

Continue reading “Visiting Mayo Clinic”

Guest Blogger – Ron Petrovich of Mayo Clinic’s Public Affairs Department Shares His Tips for Myectomy Recovery

A high-voltage song from the band AC DC rocks my headset, jolts my brain, legs, arms, and attitude. Deep below the bone-crunching guitar of “It’s A Long Way to the Top (If You Wanna Rock ‘N’ Roll)”, an accompanying hard-driving riff powers something bigger; it goes thump, thump, thump, thump, thump. I’m winded, gasp for air, and my face turns red. When I press my fingers against my sweaty neck, I count 125 thumps a minute and relish every breath.

I’m running sprints and have only been able to listen to my heart beat like this since open-heart surgery at Mayo Clinic. I was diagnosed with hypertrophic cardiomyopathy (my story) a few years ago, a condition that inhibits blood flow because the heart muscle is too thick. I tried medicine, but decided that a procedure to remove a part of that muscle, a septal myectomy, was my best option. Immediately after surgery, a new sound with a steady rhythm and powerful cadence played through my body; this music to my ears was my new and improved heartbeat, which continues today, nearly three years later.

Over this time, I have seen a lot of similar questions about HCM surgery on social media sites. After my positive experience, I wanted to share some HCM CARE tips to help patients and families prepare for surgery:

Help – Prior to surgery; get help at home and at work. Line up a caregiver, friend, or family member for two weeks after surgery. My wife was amazing and without her, I believe I would have suffered setbacks. If you work and have a leave of absence policy, make arrangements as early as possible and try to detach from work during your recovery. In my case, that helped me recover physically and mentally.

Clean – Follow wound prep instructions precisely before and after surgery. Prepare as many laundered clean towels and wash cloths as you can before leaving for the hospital, if possible, at least 20. These need to be clean every day when you get home, so load up. In my case it was also recommended to use liquid, not bar soap.

Meals – Try to buy or prepare two weeks of frozen dinners and lunches. You might not feel like bending over after you return home. This also offers the opportunity eat healthy.

Chair – If you have a seat to recline in, great. I didn’t, and that would be one of my top recommendations. If you can afford to buy a chair or rent one of those seats that props you up, please consider that. The first few weeks after surgery, I felt like a turtle trying to roll upright after tipping over.

Area restaurants and hotels – I live in Rochester, Minnesota and work at Mayo Clinic in Communications, so this experience was easier for me, but a lot of people ask for a list of hotels and restaurants.

Rehab – Studies show that people who participate in rehab have an improved long-term outcome. When I came home, my wife would take me to the mall and I would shuffle from store to store until I built up enough stamina to work out. This report from our Mayo Clinic News Network on my cardiac rehab from about two years ago shows the benefits. Also, if it is offered to you, I recommend massages by an occupational therapist who can work the muscles that have been traumatized. I began this in the hospital and believe it helped me.

Exhale and inhale – My biggest surprise was low lung capacity. Even though my daughters tried to make me laugh in the hospital, I could barely make a squeaking sound. I used a spirometer (not quite like the one in the picture but a smaller version) to learn how to exhale and inhale after being placed on the heart-lung machine during surgery. The goal or incentive of the spirometer is to open the air sacs in your lungs, making it easier to breathe deeply and keep your lungs clear. It is believed that proper usage may speed up your recovery time while reducing your risk of developing pneumonia or other breathing problems.

Additionally, no matter how many pictures and videos as you see before your surgery, it’s still surprising to see wires and tubes coming out of your chest.

Everyone’s experience is unique, so always please keep that in mind. I would go through it again in a heartbeat (pun intended) and as I have said often, the team at Mayo exceeded all of my expectations.

The intense pain following surgery subsided after the first few days and today, I feel decades younger. I have high exercise tolerance and on most days, my overall energy level is very good. However, I occasionally experience bouts of low energy, and when that happens, I try to lay low and sleep. Atypically, my appetite is less than it was prior to surgery and my food tastes have changed. That’s good in that I lost a healthy amount of weight, but bad because I don’t enjoy my wife’s fantastic cooking like I used to. While my heart is doing well, I have experienced frequent back pain over the past few years. I have gone through physical therapy and am told my core is strong, but I continue to address this challenge.

Social media was an invaluable resource to learn about HCM and preparing to make a decision about surgery.   In addition to Mayo’s online information about HCM surgery I also  found support on the Hypertrophic Cardiomyopathy Forum on Mayo Clinic Connect as well as on Facebook in the Mayo Clinic HCM Patients Group and on the blog by fellow patient Cynthia Burstein Waldman, HCMBeat.

I felt prepared because I read posts and blogs from other patients, conducted a lot of research, and felt informed going into this. I do wish that I would have connected with more patients to learn about the post-operative challenges after going home. My surgery was a great success and I hope this post can help make your experience even better.

For those of you who have had surgery, what tips would you add ?

About Ron Petrovich:

Ron Petrovich has had a long career in journalism and public relations and has worked at Mayo Clinic since 2010.  He currently serves as Communications Director, News and News Delivery in Mayo Clinic’s Department of Public Affairs.

Ron was diagnosed with HCM while an employee at Mayo Clinic (see his story here) and now generously shares the benefit of his experience in order to help others on the same journey.  You can find him on Twitter @RonaldPetrovich.

 

Editor’s Note:  If you are thinking of visiting Mayo Clinic for HCM treatment, you may also find this post from the SADS Channel blog informative.

Should HCM Treatment Differ by Sex?

According to a recent study by doctors in the Netherlands published in the journal Circulation: Heart Failure, women who had undergone septal myectomy had more diastolic dysfunction and myocardial fibrosis than men who had also undergone myectomy.

Hence, the researchers suggest that sex-specific treatment for HCM may become customary and should be a subject for future inquiry.

These findings raise concern, especially when looked at in conjunction with a recent study by doctors at the Mayo Clinic who found that women with hypertrophic cardiomyopathy have a statistically reduced rate of survival when compared to men with HCM.  

Here’s hoping that upcoming researchers will focus their efforts on improved outcomes for women with HCM.

More is Needed for Women With HCM

A recent study published in the European Heart Journal by doctors from the Mayo Clinic showed that women with hypertrophic cardiomyopathy (HCM) have a statistically reduced rate of survival as compared to men with HCM.

Continue reading “More is Needed for Women With HCM”

Guest Blogger – The View from a HCM Center – by Dr. Steve Ommen of Mayo Clinic’s HCM Center

Good stories usually have a protagonist who is confronted with a challenge or conflict.  The story then follows the protagonist’s journey to overcome that challenge.  Often, there are one or more attempts at conflict resolution which prove unsuccessful, or that even make things worse before the path to success is revealed. In the end, the best stories are those where that successful path was right in front of the protagonist the entire time.

The Challenge for HCM Patients: Local Cardiologist vs. Center of Excellence

For a good story related to the world of hypertrophic cardiomyopathy, you need look no further than Jill Celeste’s HCMBeat blog post entitled “Myectomy:  A Twice in a Lifetime Experience.” The protagonist in this story is obviously Jill.  The conflict is the impact of her HCM symptoms on her quality of life.  Her journey included unsuccessful forays into different therapies before finally, Jill arrived at the resolution of her conflict by seeking care at a medical center with dedicated expertise in the treatment of HCM.

In the sake of full disclosure, that center happens to be Mayo Clinic where I work.  Jill’s great storytelling reminded me how some really clever books and movies tell the same story from a different point of view. In this blog post, I would like to give you my point of view as a physician who directs a HCM specialty center of the best way that you can navigate your own HCM.  I will share how care by a “center of excellence” can fit into the bigger picture of your HCM care and give you some suggestions for ways to balance so you can work well with both your local care team as well as a specialty center that may be a long way from your home. Continue reading “Guest Blogger – The View from a HCM Center – by Dr. Steve Ommen of Mayo Clinic’s HCM Center”