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.
This article by Dr. Stephen Heitner of Oregon Health & Science University covers some simple lifestyle changes that can help HCM patients feel much better. In particular, Dr. Heitner mentions:
- Eating smaller meals and avoiding large carbohydrate rich meals.
- Avoiding dehydration
- Limiting alcohol
- Avoiding exercise after eating
- Engaging in moderate intensity exercise
- Managing weight
- Evaluating and treating sleep apnea and other sleep breathing disorders
- Getting appropriate treatment for anxiety and depression
The above lifestyle changes, combined with appropriate medical treatment, will keep HCM patients feeling their best.
This article, by Drs. Julio Panza and Srihari Naidu of New York’s Westchester Medical Center, describes early efforts to diagnose, categorize and treat hypertrophic cardiomyopathy, while explaining how these methods have evolved over time. A very interesting and informative read.
The software update which allows the Apple Watch 4 to take an EKG and to detect atrial fibrillation went live last week. In anticipation of the availability of these functions, I purchased an Apple Watch 4. As soon as the software was available, I downloaded it and have used it every day since. So far, I am quite pleased with my purchase. The technology works very well, even despite the fact that I have an implantable pacemaker/defibrillator.
The strip it takes looks like this:
You can send a strip via email to your doctor, and all are saved for posterity on your Iphone. (NOTE: YOU MUST HAVE AN IPHONE CAPABLE OF RUNNING THE SOFTWARE IN ORDER TO USE THE WATCH).
And, as long as you tell the software that you have never been diagnosed with atrial fibrillation, if it detects atrial fibrillation while you wearing the watch, it will send you an alert. I haven’t gotten such an alert yet and hope not to!
And here is a story about a man whose watch spotted his previously undiagnosed Afib. After a trip to the emergency room, he was able to receive proper treatment and avert a potential health crisis.
In May of this year, HCMBeat published this interview with Yale’s Dr. Daniel Jacoby and Dr. Nikolaos Papoutsidakis about their online survey of HCM patients who engage in risk-taking activities.
In this conversation, Drs. Jacoby and Papoutsidakis emphasized that the shared decision making process is an important facet of the patient/physician relationship for HCM patients. Risks should be explained, and decisions made with each patient’s set of values and priorities in mind. The doctors hoped that the results from their study would help to inform the shared decision-making process as applied to activities that involve any amount of patient risk-taking.
After analyzing data from 633 patients (282 men and 351 women), 556 patients reported participating in thrill-seeking activities, while 331 continued such participation after their HCM diagnosis. The doctors found that only 33.6% of the patients who engaged in the thrill-seeking activities experienced such minor adverse events as dizziness, nausea, palpitations or chest pain, while only .02% experienced significant events during or within an hour following the activity. Only one ICD shock was reported.
Hence, the doctors concluded that the risks associated with such activities appear to be low.
MyoKardia is collaborating with 23andMe, a genetic testing company which provides ancestry and health information directly to consumers, to create an online patient community intended to advance research efforts related to hypertrophic cardiomyopathy. The companies plan to allow 23andMe customers access to the latest information about HCM, as well as the opportunity to participate in research.
The companies will use a custom designed survey to collect baseline and follow-up data from HCM patients. They are hopeful that this collaboration will yield unique insights into HCM.
Research findings gained through the collaboration will be shared with HCM patients through the 23andMe platform. Currently more than 6,000 HCM patients are customers of 23andMe
More details of the collaboration can be found:
DISCLOSURES: HCMBeat has received unrestricted educational grants from MyoKardia. Additionally, Cynthia Burstein Waldman of HCMBeat serves as a Patient Advisor on the Steering Committee for MyoKardia’s Explorer trial.
MD Magazine has a nice feature about Dr. Robert Battle of the University of Virginia’s HCM Center. Read it here.
A recent paper published in the journal Circulation looked at the clinical course of approximately 4,600 HCM patients over the course of more than 24,000 clinical years, which the paper describes as the largest comprehensive cohort of HCM patients ever studied.
This study examined patients from eight high volume HCM centers which aggregated their institutional data into a database known as the Sarcomere Human Cardiomyopathy Registry (or the acronym the “SHaRe” for short). The results of the study showed that, in general, HCM patients are at substantially elevated risk for atrial fibrillation and heart failure, and have significantly higher mortality rates than that of the general U.S. population.
The August 16, 2018 online version of the New England Journal of Medicine contains an broad overview of the current state of clinical knowledge and treatment of HCM written by HCM expert Dr. Barry Maron. It is entitled “Clinical Course and Management of Hypertrophic Cardiomyopathy.”
Dr. Maron discusses the many advances that have been made in the diagnosis and treatment of hypertrophic cardiomyopathy since it was first described 55 years ago, noting that life expectancy and qualify of life have dramatically improved in this period of time. According to Dr. Maron, the contemporary management paradigm for HCM have reduced “the risk of adverse cardiovascular events and death to levels below the levels among patients with other cardiac or non-cardiac disorders.”
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.