Yes We Scan! ICDs and MRIs

Why MRI is Important:

Magnetic Resonance Imaging, or MRI, is one of the most important tools of modern medicine.  MRIs can be used to evaluate almost every kind of medical issue, from brain tumors to twisted ankles.  They provide clear images, and in some instances, also provide superior visualization.  Because they do not expose the imaging subject to radiation, they are generally preferred over CT scans, even when the two scans would reveal the same information.

MRI in HCM:

In the last several years, MRI has also become an important tool in the evaluation of hypertrophic cardiomyopathy (HCM).  The images resulting from MRI have proven superior in visualizing the size and structure of the heart and, when used with a contrast agent, MRIs are able to show the extent of scarring in the HCM heart.

MRI Hasn’t Been an Option for Many of Us:

MRI has been unavailable to those of us who have an implantable defibrillator or ICD to in order to protect us from sudden cardiac arrest.  Until recently, having an ICD was an absolute contraindication to MRI.  Newer MRI-safe ICD systems have been in use for the last few years, but that still leaves in place the contraindication for those of us who have older ICD units in place.  That problem is that older lead systems that were implanted along with old, non-MR compatible generators may be incompatible with the newer MR compatible technology, and it may not be possible to simply hook up these old leads to a new MRI compatible generator.  And, it is not as easy as you might think to extract old leads.  Scar tissue grows around these leads, making their removal an intricate and dangerous procedure that is best done only in carefully controlled circumstances by highly specialized physicians. Continue reading “Yes We Scan! ICDs and MRIs”

Exercise Restrictions Distressing for HCM Patients

A recent study by Stanford’s HCM Center found that HCM patients whose exercise options have been limited  by the disease may find it difficult to adapt to their newly restrictive lifestyle.  The researchers found that it was very important for patients to fully understood their restrictions and limitations.

Interacting with other HCM patients in the greater HCM community provided an effective way to obtain social support and information which supplemented that obtained from health care providers.

Comprehensive Overview of Worldwide Guidelines for Assessment and Treatment of HCM

If you are looking for a lengthy, thorough and analytical summary of the current guidelines worldwide for the assessment and treatment of HCM, then this article is a must.  Nature, the International Weekly Journal of Science, has put together a comprehensive article summarizing and synthesizing all of this information.  Just make sure you have some time to read and digest. This is not for those who like to get their soundbites on Twitter!

 

Racial Differences in HCM

A recent study of U.K. HCM patients compared a racially mixed sample of 425 patients, including 163 black patients and 262 Caucasians.  The study concluded that while asymmetric septal hypertrophy was the predominant pattern in both ethnic groups, black patients had more instances of apical and concentric hypertrophy, which could, in turn, be responsible for delayed diagnosis of these patients.

Catheter ablation useful for AFib in HCM

A recent article published in Heart looked at the safety and effectiveness of catheter ablation for the treatment of Atrial Fibrillation in patients with HCM by performing a systematic review of prior publications on the subject.

The researchers concluded that even though the success rate for HCM patients was approximately half that of patients who suffered from AFib but did not have HCM, catheter ablation is still an effective treatment for HCM patients;  especially for those HCM patients who suffer from paroxysmal AFib and who have smaller atria.

Lindsay Davis: Using Her Big Heart to Help Others With HCM

This article, published in this week’s Women’s Health magazine, features the former ballerina and beauty queen turned vocal patient activist. These days, Lindsay has focused her efforts on saving lives from sudden cardiac arrest.  Lindsay’s efforts in the state of Ohio have resulted in proposed legislation to identify student athletes at risk of sudden cardiac arrest, while her partnership with the American Heart Association is steadily making CPR and AED training a graduation requirement in high schools across the nation.

Watch for more life-saving advocacy from Lindsay in the future.  She is clearly much more than another pretty face!

Updated to include a video of Lindsay discussing her implantation with a S-ICD device.

What Are the First Signs of HCM?

 

A study published today by Dr. Carolyn Ho, of Boston’s Brigham and Women’s Hospital, and colleagues, including Australia’s Christopher Semsarian, found that there are several factors which appear to stand out in young people who later go on to develop HCM.

The children/adolescents/young adults who participated in the study all carried at least one gene associated with HCM, and were members of families with strong histories of HCM. None of the 38 young people had clinical manifestations of HCM at the beginning of the study period, while 4 went on to develop HCM by the end of the study.  In collecting the data analyzed in the study, the test results of the 4 individuals with HCM were compared to the 34 individuals that did not have HCM at the end of the study.

The factors associated with the development of overt HCM, as identified by the researchers, were: abnormal left ventricular relaxation and higher ejection fraction, EKG changes, longer mitral valve leaflets, higher NT-proBNP concentrations and troponin values.

In the conclusion, the authors acknowledged the need for further research and investigation in order to better understand the natural course and evolution of the disease.

Guest Blogger – Surgical Myectomy: A Twice in a Lifetime Experience – By Jill Celeste

I have had the joy of being a Registered Nurse for over 40 years. I was born wanting to be a nurse and started bandaging teddy bears at the age of three. By the age of 5, I was creating “medicines” by spinning blades of grass mixed with clover flowers in the front wheel well of an upside down tricycle.

As I got older, I moved on to be a Candy Striper and a Nurse’s Aide, and then I went on to get my degree as a RN, a BSN, and MSN and became a teacher, administrator, and researcher. All of this cannot REALLY prepare you for; “Being on the other side of the bed” which is what happens when a health care professional who is used to caring for patients becomes a patient themselves. Continue reading “Guest Blogger – Surgical Myectomy: A Twice in a Lifetime Experience – By Jill Celeste”

Drug for Non-Obstructive HCM Moves Along

 

Heart Metabolics announced today that its drug, Perhexiline, has moved into Phase 2b trials. The drug is intended for those patients with HCM and moderate to severe heart failure with preserved left ventricular function. Results of the Phase 2a study found the drug improved exercise capacity and quality of life in patients taking the drug.

To learn more about the staging of clinical drug trials and how they work, click here.

Exercise Does Not Trigger Most HCM Deaths

According to research presented at the 2016 European Society of Cardiology Congress today, sudden cardiac arrest from HCM, which has long been thought to result from exercise, is actually more likely to occur at rest, or even during sleep, according to Dr. Gherardo Finocchiaro, a cardiologist at St George’s University in London.  Dr. Finocchiaro also pointed out that of the 184 HCM patients in his study, almost 80% had no previous symptoms of HCM, and only 1 in 5 had been diagnosed with HCM before their deaths.  Interestingly, most of the sudden deaths from HCM analyzed in the study occurred in patients in their 30s and 40s.