MRIs for ICD and Pacemaker Patients

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.

Dr. Harry Lever Speaks Out About Problems With Generic Drugs

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.

Journalist Katherine Eban who recently published a book entitled Bottle of Lies: The Inside Story of the Generic Drug Boom is quoted in the Medscape article and has this to say:

“Dr Lever has been tireless in raising the alarm publicly, and with the FDA, about those generics that he felt were actively harming his patients, and remarkably, in case after case, he has been correct in his clinical judgments, and often far ahead of the FDA in detecting problematic drugs. His patients, many of whom I interviewed for Bottle of Lies, are grateful to him, as we all should be.”

And, in June of 2014, Dr. Lever discussed quality control issues with generic Toprol and was interviewed for this article featured in the New York Times.  Dr. Lever was alerted to the issue when many of his patients complained of a return of symptoms after having switching from the brand drug Toprol to one of the many generic formulations of the drug.

So, after all of these experiences, what does Dr. Lever himself do when prescribing drugs for his patients?  As the Medscape article goes on to say:

Despite all his misgivings, Lever still prescribes generic drugs. Brand name drugs are simply too expensive, or patients’ insurers will cover only generics. However, he does try to specify that the generics come from American companies that manufacture in this country under the eye of the FDA.

HCMBeat would like to join with Dr. Lever’s patients and thank him for his tireless efforts on behalf of HCM patients.  It is greatly appreciated.

Dr. Srihari Naidu Talks About HCM Medical Education

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”

ICD Patients – Combat ICD Anxiety

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.

Visiting Mayo Clinic

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”

Simple Lifestyle Changes Can Improve HCM Symptoms

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.

 

The Evolution of HCM: A Historical Perspective

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.

Apple Watch Spots AFib

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:

EKG Picture Apple WAtch

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.

 

Is Whole Genome Sequencing a Better Method for HCM Genetic Testing?

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.

Is Direct-to-Consumer Genetic Testing Helpful or Harmful to HCM Families?

This recent article published in Nature discusses several real-life scenarios in which patients were mistakenly diagnosed with serious genetic cardiac conditions, including HCM, as a result of erroneous direct-to-consumer genetic testing.

These misdiagnoses directly resulted from misinterpretation of raw data by third party interpretation services that were working with raw data provided to them by direct-to-consumer genetic testing companies.

After medical testing, none of the patients discussed in the highlighted cases were ultimately found to have disease or be in need of medical intervention, though all underwent unnecessary medical testing and/or invasive procedures. Some even made radical lifestyle changes as a result of the erroneous genetic information.

This article demonstrates the unreliability of direct-to-consumer genetic testing, which has the potential to cause great upheaval to both patients and the medical system.

As always, patients seeking genetic testing should do their homework. Genetic testing for heart conditions is best when done by the experts – cardiac genetic counselors!