Riding Rollercoasters with HCM: A Conversation with Yale’s Dr. Daniel Jacoby and Dr. Nikolaos Papoutsidakis

Editor’s Note:  A few weeks ago I had the chance to sit down over Skype to talk with Yale University Medical Center’s Dr. Daniel Jacoby and Dr. Nikolaos Papoutsidakis about HCM patients who engage in thrill-seeking activities. 

Drs. Jacoby and Papoutsidakis are currently circulating a questionnaire via the internet in connection with a study they are engaged in related to the safety of these activities. They are hoping to obtain at least 500 more responses to their questionnaire from HCM patients around the world in the next two months. Keep reading to learn more about the study, and if you want to participate, a link to the survey is provided at the end of this article.

Are you a HCM patient who has ever wondered whether it was safe to ride on a roller coaster?  Well, it turns out that this question is one that HCM doctors encounter quite frequently from their patients. This question and the lack of empirical evidence about its safety inspired doctors at Yale School of Medicine and Yale New Haven Health Heart and Vascular Center to design a study to answer the question whether thrill-seeking activities are safe for HCM patients.

The literature about HCM is full of warnings against activities thought to be unsafe for patients with the standard response being “No!”  With the knowledge that patients ARE actually out there engaging in such activities, Drs. Jacoby and Papoutsidakis decided to go out to the internet and crowdsource more information.

Having already surveyed patients at Yale, the doctors sought to generate more data – their goal is at least 500 additional patients in the next two months – by crowdsourcing enough data to enable them to put together a statistically significant sample which could be written up in a medical journal. This information would serve as a resource to doctors caring for HCM patients who could bring data to the conversation with patients when asked about rollercoasters or other thrill seeking activities.

The activities chosen for the study’s questionnaire were specifically chosen from previously published literature describing high risk activities believed to be unsafe by most practitioners.

These activities are:

  • Rollercoaster riding
  • Jet Skiing
  • Rafting
  • Bungee Jumping
  • Rappelling
  • Paragliding
  • Kayaking/Canoeing
  • Motor Racing
  • Snowboarding
  • BASE jumping
  • Skydiving

The questionnaire also seeks to learn what lifestyle information has been provided to patients by their cardiologists.  As an adjunct to the study about thrill-seeking, the researchers also plan to examine whether there is a difference between patient lifestyle and/or overall health when treated by a community-based general cardiologist versus a HCM expert.

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 hope that the results from this study will help facilitate the shared decision-making process as it applies to activities that involve any amount of patient risk-taking.

Dr. Jacoby knows the importance of shared decision making between physician and patient from personal experience.  He and other members of his family have a genetic condition known as hypercholesterolemia, a condition that can cause early heart attacks. This gives him unique insight into what it means to be a cardiac patient and provided his young self with an unpleasant awareness of the fact that people may die early from heart issues.  This, for him, was an eye-opening experience and gives him a unique ability to understand and empathize with HCM patients who face similar issues every day and informs his professional goal of helping his patients live their best and most fulfilling lives.

Both doctors shared that although some might think that riding on rollercoasters or participation in extreme sports may seem to be a frivolous or unnecessary subject for scientific study, this is actually an issue that may genuinely impact the quality of life of certain patients.  Drs. Jacoby and Papoutsidakis want to help patients feel more reassured about engaging in these activities so that they can continue to enjoy activities that give them pleasure.  After all, acceptable quality of life and activities which provide fulfillment are subjective.

About the researchers:

Dr. Nikolaos Papoutsidakis is a research scientist at Yale. He received M.D. and Ph.D. degrees and his cardiology training in Greece at the University of Athens. Around two years ago, he joined Dr. Jacoby’s team as an Associate Research Scientist to work on cardiomyopathy research projects with an emphasis on HCM. Yale patients may recognize him because he often shadows Dr. Jacoby in clinic to keep track of patient data for the Yale Inherited Cardiomyopathies database. He was responsible for the design of the current survey, tracking of responses and correlating data.

Dr. Daniel Jacoby is the founder of the Yale Inherited Cardiomyopathy Program and runs the HCM Clinic at Yale where he treats approximately 500 HCM patients.  Dr. Jacoby’s undergraduate and medical degrees are both from Yale.  When a fellow at Columbia Presbyterian hospital in New York City, he took care of a young Venezuelan patient who suffered from HCM and this piqued his interest in HCM. After completing his training in NYC, he returned to New Haven to join the faculty at Yale Medical School in 2009.  At Yale, he had the opportunity to collaborate with longtime HCM expert Professor William McKenna, then of University College London, through a collaborative program between Yale and the University of London.

NOW THAT YOU HAVE READ ALL ABOUT THE SURVEY, FILL OUT A QUESTIONNAIRE YOURSELF! THE LINK IS JUST BELOW.  IT SHOULD ONLY TAKE YOU A FEW MINUTES.

Welcome to the Hypertrophic Cardiomyopathy and Thrill-seeking Activities Survey page!

Electric & Hybrid Cars: A Safe Choice for ICD & Pacemaker Patients

Car Shopping

Recently, I began shopping for a new car.  The process is overwhelming! There are so many factors to consider when looking for a new vehicle: gas mileage, sedans vs. hatchbacks, SUVs…the list goes on and on.  Electrics and hybrids are all the rage here in Southern California, but I wasn’t sure if they would be safe for me to drive because I have an implantable defibrillator which also functions as a pacemaker.

German Study: Safety of Popular European Electric Cars

Lucky for me, I didn’t have to wait too long for an answer to my question.  According to a recent German study published in the Annals of Internal Medicinepeople with implanted cardiac devices can safely drive the most common electric cars on the market today.  This study measured the magnetic field strength in four electric cars with the largest market share in Europe: the BMW i3, Nissan Leaf, Tesla Model 85S, and the Volkswagen e-up!  Though the study found that recent models of all of these cars were safe, the authors of this study did caution that future models could potentially cause interference with implantable cardiac devices, depending on  their design.

For more on the recent German study, see these articles at Reuters, Medical Xpress.com and TechTimes.

2017 AHA Preliminary Data – Tesla

The findings from the German study added to preliminary data presented at a 2017 meeting of the American Heart Association.

Tesla Charging

Participants’ devices were monitored for electromagnetic interference while they sat in or stood near a Tesla S P90D.  Testing was done with the study participants situated in a variety of positions—sitting in the driver’s seat, passenger seat, backseat and standing next to the charging port.

The study found that sitting in, or standing close to the charging port of a Tesla while the car was charging at a 220 volt charging station did not trigger an ICD shock or cause interference with the assorted implantable defibrillators. 

2013 Mayo Clinic Study – Toyota Prius

Lastly, Mayo Clinic cardiologists presented similar findings at the American College of Cardiology meeting in 2013.

56050078 - gray toyota prius hybrid - sideviewThat early study found no issues when patients implanted with ICDs and/or pacemakers drove a 2012 Toyota Prius hybrid at 30 mph, 60 mph and at variable speeds of acceleration and deceleration, as well as sitting in the driver’s seat, the front passenger seat, the left and right rear seats and in front of and behind the car from the outside.  Although the researchers found that the implantable devices were exposed to electromagnetic fields inside the car, the amount of interference wasn’t significant enough to cause problems with the devices.

For more on the 2013 Mayo study, see this article in Popular Science.

 

Now that I know that driving these cars is safe for me, I will be out on a test drive trying to narrow down my options!

Restyle HCM Study: Ranolazine Doesn’t Improve HOCM Heart Failure Symptoms

Dr. Iacopo Olivotto and a team of Italian researchers conducted a recent multi-center trial of the late sodium channel blocker ranolazine.  The results of the trial showed that the drug failed to improve functional capacity, diastolic function, quality of life or brain natriuretic peptide (BNP) levels in 80 non-obstructive HCM patients.

Nevertheless, the researchers found that ranolazine is a very safe drug which may still be useful in the treatment of HCM by reducing arrhythmias and improving angina.

A companion editorial by Dr. Perry Elliot from the U.K. shed light on the difficulties inherent in designing clinical trials for HCM.  Dr. Elliot noted that Restyle HCM was the third unsuccessful attempt at finding a new drug for HCM in the past year since a study on  eleclazine, a drug with similar properties, and another for the drug perhexilene were both halted last year due to lack of efficacy.

Regardless, Dr. Elliot stated that increasing worldwide collaboration between HCM centers and expanding knowledge of certain sub-types of HCM treatable with specifically targeted therapies substantially improve the outlook for upcoming HCM drug trials.

Doctor with HCM Calls for Patient Access to Medical Device Data

In an editorial entitled “It’s My Heart, Why Not My Data” by Dr. Ira Nash in the January 2, 2018 edition of Circulation, Nash calls for device manufactures to allow patients to access the data generated by their implantable devices.

Nash, a cardiologist who himself has hypertrophic cardiomyopathy, calls the paternalistic practice of limiting data access to physicians anachronistic in a world which has become more and more focused on empowering patients to make collaborative decisions with their physician.

Dr. Nash explains in a postscript to the article that after being denied patient access to the data generated by his implantable loop recorder, he was ultimately granted access to his data as a physician. Most of us don’t have that ability.  It would certainly be nice if patients were given the option to access their data simply because it is most important and relevant to them.  It is the patient’s life, after all, which is at stake.

Sudden Cardiac Death in Young Athletes

Editor’s Note:  This post originally appeared on the blog of Dr. Howard J. Luks. Dr. Luks  wrote this blog entry in collaboration with HCM expert Dr. Srihari S. Naidu of New York’s Westchester Medical Center. You can find the original post here.  You can find both Dr. Luks and Dr. Naidu on Twitter @hjluks and @SrihariNaiduMD.

Sudden cardiac death in young athletes continues with alarming frequency.  The most common cause of sudden death in the young athlete is hypertrophic cardiomyopathy or HCM.  Simply put, HCM means the heart muscle is bigger.  Many of us believe that bigger muscle means stronger muscle.  That is not always the case with the heart.  The heart is a mechanical pump with a complex arrangement of chambers which store the blood. How that pump works is controlled by a very complex electrical system.  Hypertrophic cardiomyopathy can interfere with one or both of these critical functions of the heart and lead to sudden cardiac death.

Continue reading “Sudden Cardiac Death in Young Athletes”

HIGHLIGHTS FROM THE INTERNATIONAL HCM SUMMIT, PART IV

Editor’s Note:  This is the 4th of 4 blog entries which summarizes the presentations given at the recent International HCM Summit VI in Boston.  The presenter and their hospital affiliation are noted below, along with the topic of their presentation.  When possible, you may access the presenters’ slides via hyperlink by clicking on the name. (Note that not all presenters made their slides available).

To see Part I of this series of highlights from the HCM Summit VI, click here, to see Part II of this series click here, and to see part III of this series. click here.

Continue reading “HIGHLIGHTS FROM THE INTERNATIONAL HCM SUMMIT, PART IV”

HIGHLIGHTS FROM THE INTERNATIONAL HCM SUMMIT VI, PART III

**Because so much HCM information was presented at the Summit, this is the third of multiple blog entries.  Stay tuned to HCMBeat for more highlights from the HCM Summit.  To see Part I of this series of highlights from the HCM Summit VI, click here and to see Part II of this series click here.**

The symposium was organized by long time HCM expert Dr. Barry Maron and his son, Dr. Martin Maron.  Both Marons are now affiliated with Tufts Medical Center’s Hypertrophic Cardiomyopathy Center.

What follows are summaries from selected talks presented at the meeting.  The presenter and their hospital affiliation are noted below, along with the topic of their presentation.  When possible, you may access the presenters’ slides via hyperlink by clicking on the name. (Note that not all presenters made their slides available).

Continue reading “HIGHLIGHTS FROM THE INTERNATIONAL HCM SUMMIT VI, PART III”

HIGHLIGHTS FROM THE INTERNATIONAL HCM SUMMIT VI, PART II

**Because so much HCM information was presented at the Summit, this is the second of multiple blog entries.  Stay tuned to HCMBeat for more highlights from the HCM Summit.  To see Part I of this series of highlights from the HCM Summit VI, click here.**

The 6th International HCM Summit was held October 27, 28 and 29th in Boston, Massachusetts.  This symposium brings together HCM professionals from around the world who are there to learn about and discuss the latest developments in the treatment of HCM.

The symposium was organized by long time HCM expert Dr. Barry Maron and his son, Dr. Martin Maron.  Both Marons are now affiliated with Tufts Medical Center’s Hypertrophic Cardiomyopathy Center.

What follows are summaries from selected talks presented at the meeting.  The presenter and their hospital affiliation are noted below, along with the topic of their presentation.  When possible, you may access the presenters’ slides via hyperlink by clicking on the name. (Note that not all presenters made their slides available).

Continue reading “HIGHLIGHTS FROM THE INTERNATIONAL HCM SUMMIT VI, PART II”

HIGHLIGHTS FROM THE INTERNATIONAL HCM SUMMIT VI, PART I

**Because so much HCM information was presented at the Summit, this will be the first of multiple blog entries.  Stay tuned to HCMBeat for more highlights from the HCM Summit.  You will find Part II of this series by clicking here.**

The 6th International HCM Summit was held October 27, 28 and 29th in Boston, Massachusetts.  This symposium brings together HCM professionals from around the world who are there to learn about and discuss the latest developments in the treatment of HCM.

The symposium was organized by long time HCM expert Dr. Barry Maron and his son, Dr. Martin Maron.  Both Marons are now affiliated with Tufts Medical Center’s Hypertrophic Cardiomyopathy Center.

What follows are summaries from selected talks presented at the meeting.  The presenter and their hospital affiliation are noted below, along with the topic of their presentation.  When possible, you may access the presenters’ slides via hyperlink by clicking on the name. (Note that not all presenters made their slides available).

Continue reading “HIGHLIGHTS FROM THE INTERNATIONAL HCM SUMMIT VI, PART I”

Guest Blogger – When a Seizure is not a Seizure – by Wendy Borsari

It’s strange to think that a chaotic arrhythmia in the heart might actually appear to be a seizure caused by something that has gone haywire in the brain, but with sudden cardiac arrest (SCA) this can sometimes happen.

This is the true story of what happened to my daughter.

Continue reading “Guest Blogger – When a Seizure is not a Seizure – by Wendy Borsari”