Lisa Marie Presley Dies of Cardiac Arrest at Age 54

All major news outlets reporting that Lisa Marie Presley has died this afternoon after suffering cardiac arrest at her home this morning.  She was resuscitated at home, and then transported to a local hospital where she passed away.

It has previously been reported that Elvis himself carried a HCM causing gene.   Elvis’ genetic analysis was featured in a program by U.K.’s Channel 4 Television in 2014.  Elvis’ mother also died before age 50 of a “heart attack.”

Sending deepest condolences to Priscilla Presley, daughters Riley Keough, Harper Lockwood and Finley Lockwood.

Damar Hamlin’s Cardiac Arrest Should Move America to Action

Sudden cardiac arrest (SCA) has had a moment in the public eye this week.  The NFL game between the Cincinnati Bengals and Buffalo Bills, which was postponed after Bills safety Damar Hamlin suffered a cardiac arrest and collapsed on the field, was, according to CNN, the most-watched “Monday Night Football” telecast in ESPN history, averaging 23.8 million viewers.  

Damar Hamlin’s misfortune shined a public light on the grim reality that we as HCM patients live with every day:  the possibility we could suffer SCA at any moment without warning.

HCMBeat has written before about fellow HCM patient Lindsay Davis, who uses her platform as a former Miss Ohio to effect positive change for those with heart issues.

Lindsay pic 2022

In fact, Lindsay successfully lobbied for what is now known as “Lindsay’s Law,” which educates coaches, parents and athletes on the signs and symptoms of an underlying heart condition and removes a child with symptoms of heart disease from play until cleared by a cardiologist.

Now Lindsay has taken the opportunity to write a compelling op-ed for Newsweek about the need for cardiopulmonary resuscitation (CPR) and automatic external defibrillator (AED) training in the community. As Lindsay correctly points out, Damar Hamlin suffered a cardiac arrest in a NFL stadium surrounded by trainers, medical personnel and the most up to date equipment.  Children who play sports do not have the same  advantages. If a similar situation occurred on a school baseball diamond or a playground basketball court, it is likely that the bystanders would not be so prepared to render aid.

Some of you may know that I have been a lifelong fan of the New Orleans Saints football team. Gayle Benson, the owner of the Saints and the Pelicans, the local NBA team, did something that I hope will serve to inspire other professional teams to do for their communities. Mrs. Benson reached out and, finding there was a need, donated a total of 67 AEDs to the New Orleans Recreation Department (NORD) and the neighboring Jefferson Parish Recreation Department (JPRD).  Mrs. Benson will also provide CPR and AED training to NORD and JPRD personnel so they know what to do in the event of a cardiac arrest at their facilities.

Time is key when a person suffers a cardiac arrest.  According to the American Heart Association (AHA), 350,000 cases of cardiac arrest occur each year outside of a hospital, and the survival rate is less than 12 percent. CPR can double or triple the chances of survival.

A 2018 study highlighted on the AHA website shows the great benefit of being resuscitated by an AED following a cardiac arrest.  Read the following statistics:

  • Cardiac arrest victims who received a shock from a publicly-available AED had far greater chances of survival and being discharged from the hospital than those who did not; 66.5 percent versus 43 percent.
  • Cardiac arrest victims who received a shock from a bystander using a publicly-available AED had 2.62 times higher odds of survival to hospital discharge and 2.73 times better outcomes compared to victims who received their first  AED shock from emergency responders.
  • Victims who received an AED shock from a bystander (57.1 percent) using a publicly-available device instead of having to wait for emergency responders (32.7 percent) had near normal function and better outcomes.
  • Without a bystander using AED shock therapy, 70 percent of cardiac arrest patients either died or survived with impaired brain function (emphasis added).

More information about the chain of survival can be found on the American Heart Association website.

If you are looking for a New Year’s Resolution (or even if you aren’t!) take the time to learn CPR and learn how to use an AED today.  AEDs are so simple to use that even a 5th grader can administer properly.

And here is short video from Mayo Clinic showing how to do hands-only CPR.

And if you are a heart patient, think about getting an AED for your home.  I myself have one in my dining room.

AED dining room

Finally, I am sending out my best personal wishes to Damar Hamlin for a complete recovery. (As of this writing, he appears to be well on his way.)  

Most of all, I am sending out my sincere hope that this disturbing incident will improve the chances that the next person who suffers cardiac arrest will be lucky enough to be in the right place at the right time for complete resuscitation.

Wishing the entire HCM community a happy, and most of all a healthy, New Year. 

Cynthia Burstein Waldman  © 2023

All views expressed herein are my own.

Jardiance for HCM Patients?

A recent study published in the American Journal of Cardiology found that patients with non-obstructive hypertrophic cardiomyopathy and diabetes showed significant improvements to diastolic heart function and BNP (a hormone produced by the body which indicates heart wall stress) from the use of a drug used for diabetes known as a sodium glucose co-transponder 2 inhibitor (SGLT2).  

This class of drugs is commonly used to lower blood sugar in diabetics.  One SGLT2 in common usage is Jardiance (empagliflozin).

Since treatments for non-obstructive HCM patients are so limited, this class of drugs presents a potential treatment opportunity for non-diabetic HCM patients as well. 

Hey all you researchers out there – sounds like a good clinical trial!

HCM Impact on Mental Health

A recent study by Korean researchers found that HCM is associated with mental health disorders, especially during the first year after a HCM diagnosis.  

This study only scratches the surface of the topic, but it does bring up an important point which we hope that medical providers will take to heart:  the mental health of HCM patients is just as important as their physical health and sometimes, mental health referrals and/or medications may be a necessary part of the HCM treatment plan.

Myectomy: Still the Gold Standard for HOCM

An expert panel comprised of many of the world’s top HCM experts recently published a retrospective analysis in The American Journal of Cardiology which looked at septal myectomy over the last 60 years of practice.

 Beginning with the introduction of the procedure at the National Institute of Health in the early 1960s, this paper surveys the history of the procedure until the present day.  The conclusion of the paper is that myectomy remains the best treatment for patients with obstructive hypertrophic cardiomyopathy.

Continue reading “Myectomy: Still the Gold Standard for HOCM”

FDA Approves Mavacamten under Brand Name Camzyos

At long last, there is a FDA approved drug specifically intended for the treatment of hypertrophic cardiomyopathy.  After several years of testing, and based on the results of the groundbreaking EXPLORER-HCM trial, Bristol Myers Squibb’s new drug mavacamten, being marketed under the brand name Camzyos, is now available to HCM patients.

Continue reading “FDA Approves Mavacamten under Brand Name Camzyos”

Sports and HCM – Moving Toward Shared Decision Making

While competitive sports used to be frowned upon in the HCM literature, there is now some evidence that a patient’s risk from exercise is low when they have been implanted with an implantable cardioverter defibrillator (ICD). This feature from Medpage Today gives an overview of contemporary thinking about exercise in HCM patients.

Continue reading “Sports and HCM – Moving Toward Shared Decision Making”

Guest Blogger Gwen Mayes, JD, MMSc – Cautiously Awaiting the Release of Mavacamten

            Fifteen years ago, I referred myself to Mayo Clinic in Rochester, Minnesota, to be evaluated for a septal myectomy by what was at the time, one of the country’s few expert centers for the treatment of hypertrophic cardiomyopathy.   I traveled to Mayo from my native state, Kentucky, on a brief hiatus from a well-established career in health policy in Washington, DC.

Continue reading “Guest Blogger Gwen Mayes, JD, MMSc – Cautiously Awaiting the Release of Mavacamten”

Cytokinetic’s Drug Aficamten & Upcoming HCM Summit – Interview with Dr. Martin Maron

Editor’s note:  You have probably noticed a distinct uptick in clinical trials of potential treatments for hypertrophic cardiomyopathy.  HCMBeat has been following this trend and has previously published a host of stories about such trials, including this story about the positive results from the REDWOOD-HCM Phase 2 clinical trial, as well as past stories discussing the biopharmaceutical company Cytokinetics, its  drug aficamten (previously known as CK-274), and the REDWOOD-HCM trial.

Some of these earlier stories are as follows: 

2 Companies Testing Drugs for HCM

HCM Clinical Trials – the Latest News

Positive Signs from REDWOOD-HCM

Cytokinetics Moves Forward with HCM Drug Trial

Recently, Cynthia Waldman of HCMBeat had the opportunity to speak over Zoom with Dr. Martin Maron, who recently served as the principal investigator of Cytokinetics’ REDWOOD trial.  The conversation focused both on Cytokinetic’s drug aficamten (previously known as CK-274), and the new class of drugs known as “myosin inhibitors.”  What follows is a transcript of their conversation (which has been edited for readability). 

Continue reading “Cytokinetic’s Drug Aficamten & Upcoming HCM Summit – Interview with Dr. Martin Maron”

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!