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!

Positive Myectomy Outcomes for Patients 65+

According to a recent retrospective study at Oregon Health & Sciences University, appropriately selected patients 65 or older who underwent septal myectomy for obstructive hypertrophic cardiomyopathy (HOCM) have surgical outcomes similar to younger patients. Therefore, older age should NOT be an automatic disqualifier for myectomy. All potential treatments for outflow tract obstruction should be considered, with age being only one of many factors influencing the decision.  

Myectomy Sooner?

An article by doctors at the Cleveland Clinic recently published in the Journal of the American Heart Association advocates for earlier surgical intervention for patients with obstructive hypertrophic cardiomyopathy (HCM).   

According to this article, obstructed HCM patients who undergo myectomy earlier have better long term survival. Therefore, these doctors take the position that patients should not wait until they become severely symptomatic and/or have run out of medical options to undergo myectomy surgery. 

Meanwhile, an accompanying editorial by Dr. Mark Sherrid of NYU Langone Health is to the contrary.  Dr. Sherrid argues that medications like disopyramide (Norpace) are effective in reducing symptoms and that the inherent risks from open heart surgery are not outweighed by a theoretical improvement in longevity.

Regardless of the timing of surgery, Dr. Sherrid points out that with multiple companies now developing novel treatments for HCM, visibility of the disease will increase which will ultimately result in better patient outcomes for all with HCM. 

 

 

 

HCM Treatment: The View from OHSU

If you are looking for a good survey of current practices in the treatment of HCM, a recent article published in the journal Structural Heart by Dr. Ahmad Masri and the team at Oregon Health and Sciences University (OHSU) provides an informative overview of thirty controversies and considerations in the treatment of HCM. This article explains in some detail how the doctors at this HCM Center approach these situations. 

Continue reading “HCM Treatment: The View from OHSU”

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”

Cardiac MRI Helps Assess Sudden Death Risk

A recent study by doctors at the Cleveland Clinic suggests that the presence of late gadolinium enhancement  (LGE) should be added to the various risk factors currently used to assess patients who are at low or intermediate risk of sudden death.  The presence and balancing of these risk factors are used by patients and doctors to determine the need for implantable cardiac defibrillators (ICDs).   LGE is an indication of cardiac scar tissue and can be seen on cardiac MRI scans.  This study recommended that LGE comprising a total of 15% or more of left ventricular mass be used as an additional risk factor. The study found that this indicator worked equally well when applied to both obstructed and non-obstructive HCM patients.

Interestingly, an earlier but recent study published by Cleveland Clinic doctors found that the risk factors currently in use to determine the need for an ICD fall short as applied to patients with the obstructive form of HCM.

Risk factors in common use today have been propounded by the American College of CardiologyAmerican Heart Association (ACC/AHA) in the U.S., while a different set of guideline and a mathematical risk calculator was promulgated more recently in Europe by the European Society of Cardiology (ESC).  You can find more about the ACC/AHA and ESC guidelines here.

A second and related finding of this study by the Cleveland Clinic, known for its large HCM program and high volume of myectomies, was that patients who undego  myectomy appear to experience a protective effect from their surgeries.  Even when found to have 25% or more LGE, patients in this study who previously underwent myectomy experienced a lower than expected rate of adverse events.

SCD Risk Assessment Guidelines in HCM: Impact of Myectomy & AFib

A recent study by doctors at the Cleveland Clinic found that current guidelines used to assess risk of sudden cardiac death (SCD) in HCM fall short when applied to the population of patients with the obstructive form of HCM (HOCM).

The study looked at both the European Society of Cardiology (ESC) and American College of Cardiology (ACC)/American Heart Association (AHA) guidelines, and found that both sets of guidelines came up short in predicting SCD.  In particular, the study found that patients who had previously undergone myectomy had a reduced risk of SCD that is not accounted for in existing risk models.

Conversely, the study found that patients with atrial fibrillation had a higher risk of SCD, which is also not reflected in the existing risk models.

A companion editorial by Dr. Harzell Schaff of the Mayo Clinic explains the likely reasons for the myectomy findings, while a second accompanying editorial by Dr. John Jefferies of Cincinnatti Children’s Hospital (who has recently accepted an appointment at the U. of Tennessee Health Science Center in Memphis) maintains that the ESC and ACC/AHA guidelines should be changed to reflect the lower SCD risk following myectomy.

Click here for previous coverage of the ESC and ACC/AHA guidelines.  If you would like to try out the ESC Risk Calculator for yourself, click here.

 

 

CNN Chief Jeff Zucker Set for HCM Surgery

According to several news reports, CNN chief and former NBCUniversal head Jeff Zucker is taking six weeks off to undergo elective surgery to treat his hypertrophic cardiomyopathy.  Specific details about the surgery were not revealed.  New York Magazine reported that in 2010 he visited Minneapolis Heart Institute where he was told he needed an implantable defibrillator.

The most common surgery for the treatment of HCM symptoms is a septal myectomy.

See these stories for more info:

Wall Street Journal

Atlanta Journal Constitution

Los Angeles Times

Deadline

Variety

Hollywood Reporter

HCMBeat wishes Mr. Zucker the best of luck during his surgery and recovery.

Here is a link to some resources we have collected for patients who are going through myectomy:  Resources for Patients About Myectomy

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.