Should Alcohol Septal Ablation Be Considered for Younger Patients?

Since the early 1960s, surgical septal reduction, also known as septal myectomy, has been used as a therapy for the treatment of obstructive hypertrophic cardiomyopathy. Pioneered at the National Institute of Health by cardiac surgeon Dr. Glenn Morrow, himself a HCM patient, septal myectomy has become a mainstay of the HCM treatment arsenal.

An alternative to septal myectomy, alcohol septal ablation (ASA), was first performed by Ulrich Sigwart in the United Kingdom at the Royal Brompton Hospital in London in 1994.

For many years, the indications for ASA procedures has been limited to older patients with obstructive HCM who were not otherwise healthy enough to undergo open heart surgery.  However, some doctors are now advocating to expand the indications for ASA to include symptomatic younger patients.

(For more information about myectomy and ASA,  click here and scroll to bottom of page).

Continue reading “Should Alcohol Septal Ablation Be Considered for Younger Patients?”

Pre-Implantation Genetic Testing to Eradicate Genetic Disease- An Editorial

In this editorial by Lee Cooper published in today’s issue of Wired Magazine, a patient with Long QT Syndrome makes the case for the use of pre-implantation genetic diagnosis (PGD) used in tandem with in vitro fertilization (IVF) as a means to eliminate hereditary disease.

This technique has already been used in HCM; most successfully in cases caused by a single, identifiable genetic mutation. PGD combined with IVF is a potentially viable option for patients with HCM who are planning to grow their families.

Of course, there are many ethical issues raised with the use of this technology, and the use (or non-use) of these technologies is a very personal decision.  Perhaps such moral uncertainty is what caused Cooper’s doctors to be “reticent to discuss IVF head on” and “bashful about the idea of removing [t]his disease from [his] lineage.”

As Cooper says in the editorial “…we can, and we must be able to speak clearly about the best ways to prevent disease if we are serious about eliminating it.”  If every option were to be laid out on the table for consideration by the patient, then s/he would have the freedom to make a final decision in accordance with his/her own unique set of values.

What do you think?

RESET-HCM: Rethinking Exercise for HCM Patients – Interview with Dr. Sara Saberi and Dr. Sharlene Day

Editor’s note: This is our first interview feature on HCMBeat.  In the future, we hope to feature more interviews with other HCM researchers who have published articles of interest to the HCM community.  

By now, you have probably already heard the buzz about RESET- HCM – a study about the effects of exercise on HCM patients conducted by Dr. Sara Saberi and Dr. Sharlene Day at the Hypertrophic Cardiomyopathy Clinic of the University of Michigan’s Frankel Cardiovascular Center in collaboration with Dr. Matthew Wheeler and Dr. Euan Ashley of Stanford’s HCM Center. The findings were presented at the American College of Cardiology Conference on March 17, 2017 held in Washington D.C. and were the subject of this feature on HCMBeat. 

Recently, Cynthia Waldman of HCMBeat had the opportunity to sit down with Drs. Saberi and Day for a detailed conversation (over Skype) about the study.  What follows is a transcript of their conversation (which has been edited for readability).

Continue reading “RESET-HCM: Rethinking Exercise for HCM Patients – Interview with Dr. Sara Saberi and Dr. Sharlene Day”

End of the Road for Eleclazine and Liberty HCM Study

 Eleclazine:  The Liberty HCM Trial

It appears to be the end of the road for the Gilead drug eleclazine, a late sodium channel inhibitor previously known as GS-6615.  Eleclazine, with properties similar to the anti-angina drug ranolazine (which was approved by the FDA in 2006), was the subject of a recently terminated HCM clinical trial known as Liberty-HCM.  The HCM eleclazine study focused on whether the drug would improve symptoms and exercise capacity in patients with HCM by increasing their peak oxygen uptake, resulting in improved VO2 max readings on exercise testing.  The HCM study began enrolling patients in February 2015. Data collection had been scheduled to continue through June 2017. Continue reading “End of the Road for Eleclazine and Liberty HCM Study”

Depression: 10 Ways for Heart Patients to Cope Without Using Medication

This highly informative blog article from Carolyn Thomas of Heart Sisters , while targeted toward people with coronary artery disease, contains much useful information which can be applied to heart patients with other conditions as well.  This particular article offers many useful suggestions of ways to help combat depression which could just as easily be implemented by those with HCM.

An added bonus is that most of these suggestions do not involve ingesting anything at all!

One caveat she mentions, which bears repeating, is that you should ALWAYS discuss any type of dietary supplement with your cardiologist before you begin taking it.

Cincinnati Children’s Blog Answers Questions About Genetic Testing for Cardiomyopathies

This informative blog article about genetic testing features practical advice about genetic testing and is taken from answers provided in a live presentation by Drs. John Jefferies and Ivan Wilmot.

Issues addressed include: how the test is administered, insurance issues related to the test and the meaning of a positive genetic test.

 

 

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”

Yes We Scan! ICDs and MRIs

Why MRI is Important:

Magnetic Resonance Imaging, or MRI, is one of the most important tools of modern medicine.  MRIs can be used to evaluate almost every kind of medical issue, from brain tumors to twisted ankles.  They provide clear images, and in some instances, also provide superior visualization.  Because they do not expose the imaging subject to radiation, they are generally preferred over CT scans, even when the two scans would reveal the same information.

MRI in HCM:

In the last several years, MRI has also become an important tool in the evaluation of hypertrophic cardiomyopathy (HCM).  The images resulting from MRI have proven superior in visualizing the size and structure of the heart and, when used with a contrast agent, MRIs are able to show the extent of scarring in the HCM heart.

MRI Hasn’t Been an Option for Many of Us:

MRI has been unavailable to those of us who have an implantable defibrillator or ICD to in order to protect us from sudden cardiac arrest.  Until recently, having an ICD was an absolute contraindication to MRI.  Newer MRI-safe ICD systems have been in use for the last few years, but that still leaves in place the contraindication for those of us who have older ICD units in place.  That problem is that older lead systems that were implanted along with old, non-MR compatible generators may be incompatible with the newer MR compatible technology, and it may not be possible to simply hook up these old leads to a new MRI compatible generator.  And, it is not as easy as you might think to extract old leads.  Scar tissue grows around these leads, making their removal an intricate and dangerous procedure that is best done only in carefully controlled circumstances by highly specialized physicians. Continue reading “Yes We Scan! ICDs and MRIs”

Lindsay Davis: Using Her Big Heart to Help Others With HCM

This article, published in this week’s Women’s Health magazine, features the former ballerina and beauty queen turned vocal patient activist. These days, Lindsay has focused her efforts on saving lives from sudden cardiac arrest.  Lindsay’s efforts in the state of Ohio have resulted in proposed legislation to identify student athletes at risk of sudden cardiac arrest, while her partnership with the American Heart Association is steadily making CPR and AED training a graduation requirement in high schools across the nation.

Watch for more life-saving advocacy from Lindsay in the future.  She is clearly much more than another pretty face!

Updated to include a video of Lindsay discussing her implantation with a S-ICD device.

Guest Blogger – Surgical Myectomy: A Twice in a Lifetime Experience – By Jill Celeste

I have had the joy of being a Registered Nurse for over 40 years. I was born wanting to be a nurse and started bandaging teddy bears at the age of three. By the age of 5, I was creating “medicines” by spinning blades of grass mixed with clover flowers in the front wheel well of an upside down tricycle.

As I got older, I moved on to be a Candy Striper and a Nurse’s Aide, and then I went on to get my degree as a RN, a BSN, and MSN and became a teacher, administrator, and researcher. All of this cannot REALLY prepare you for; “Being on the other side of the bed” which is what happens when a health care professional who is used to caring for patients becomes a patient themselves. Continue reading “Guest Blogger – Surgical Myectomy: A Twice in a Lifetime Experience – By Jill Celeste”