In November at the American Heart Association’s Scientific Sessions held in Philadelphia, AHA announced that it would be starting a three-year initiative focused on hypertrophic cardiomyopathy, also known as HCM. The initiative is sponsored by MyoKardia, a San Francisco based company that is currently in clinical trials for mavacamten, the first drug specifically intended to treat HCM.
Last week, Cynthia Waldman of HCMBeat had the opportunity to speak with Amy Schmitz, AHA’s National Corporate Relations Director and Alexson Calahan, a Communication Manager for AHA.
What follows is a summary of their conversation about the forthcoming HCM initiative that has been edited for clarity.
Continue reading “AHA Seeking Patient Input for New HCM Initiative”
Here is an informative new video from our friend Doug Rachac that nicely explains the safety of MRIs for patients with implantable defibrillators and pacemakers.
I wrote a blog piece about this same issue a few years back. Here it is:
Yes We Scan! ICDs and MRIs
And a few other relevant blog entries here on HCMBeat:
Study Shows MRIs Safe for Pacemaker & ICD Patients
Chapter 3: MRI Safety for ICD & Pacemaker Patients
Safety of MRIs With Abandoned Leads
Last year, Doug wrote this blog entry for HCMBeat specifically about magnets and airports. Read that here:
Blogger Doug Rachac – Magnets and Airports: Should ICD Patients Be Afraid?
And, you can find more about ICDs from Doug on his YouTube Channel.
This Medscape article highlights the extraordinary efforts of Dr. Harry Lever, Director of the Cleveland Clinic’s Hypertrophic Cardiomyopathy Center, in educating patients and physicians alike about quality issues with generic drugs. Dr. Lever has been instrumental in publicizing the fact that generic drugs are NOT always the same as their name brand counterparts, and that foreign generics are not put through the same level of scrutiny as drugs in the U.S.
Continue reading “Dr. Harry Lever Speaks Out About Problems With Generic Drugs”
Recently, Cynthia Waldman of HCMBeat corresponded with Dr. Srihari S. Naidu of Westchester Medical Center the second edition of an HCM textbook he recently edited, as well as about medical education surrounding hypertrophic cardiomyopathy in general. What follows is a transcript of their correspondence (which has been slightly edited for readability).
Continue reading “Dr. Srihari Naidu Talks About HCM Medical Education”
This informative blog article written by a social worker for the University of Michigan’s Health Blog has some great tips on how to deal with anxiety when living with an ICD.
I recommend it.
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”
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!
This article provides a pretty accurate history of handheld consumer EKG devices along with a description of what it is like to download and use the Apple software.
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.
According to this study published recently in the Journal of the American College of Cardiology, whole genome testing may sometimes be used to identify the gene(s) responsible for HCM when targeted genetic testing (the type used in the clinical setting) has been inconclusive.
In particular, the study found the responsible gene(s) in 9 of 26 families (20%) in whom targeted testing had previously been inconclusive.
When used as the initial form of genetic testing, whole genome sequencing identified the responsible HCM gene in 5 of 12 families, or 42%.
According to this article in Wired U.K., a whole genome sequencing test costs about $600 and takes just a few weeks to complete. On the other had, the cost of data storage necessary to store such a large amount of collective data is, according to this article, prohibitively high.
If not for everyone, perhaps whole genome sequencing could be used in families where traditional genetic testing has proven inconclusive. Time will tell.