A recent study by several HCM genetics researchers around the globe, led by Australia’s Dr. Jodie Ingles, found that 2/3 of genetic mutations previously reported to patients as HCM causative may actually NOT trigger HCM.
A recent study conducted in the U.K. evaluated whether the anti-anginal drug trimetazidine would improve symptoms and exercise capacity for those patients with non-obstructive hypertrophic cardiomyopathy.
Unfortunately, this study which was conducted by Dr. Perry Elliott and his colleagues at University College London, found that trimetatazidine did not improve exercise capacity in these patients. Following the results of this study, trimetazidine will now join ranolazine and spironolactone in the compost heap of drugs which tried and failed to improve HCM symptoms. While a third drug, perhexiline, was found to improve symptoms for non-obstructive HCM, its limitations, including potentially serious side effects, stand in the way of its common usage.
In a companion editorial to this study entitled “Non-Obstructive Hypertrophic Cardiomyopathy-the High Hanging Fruit,” Dr. Sharlene Day of the University of Michigan’s HCM Center discusses the difficulties seen in drug trials related to non-obstructive HCM.
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.