In their own words: Stories of survivors and family members

A table setting at a recent Children’s Cardiomyopathy Foundation function honoring Dorien “DJ” Taylor, who died of sudden cardiac arrest in May 2009, and was later diagnosed with hypertrophic cardiomyopathy.

BY JAMES HARNEY | Heart disease. It preys on women — killing one in three every year — and it doesn’t discriminate according to age, race or even fitness levels, and at times even crosses gender lines. It can take more commonly known forms, such as a heart attack or stroke, or manifest itself in more insidious ways, as hypertrophic cardiomyopathy, a silent — sometimes deadly — thickening of the walls inside a heart. If detected and treated in time — through surgery, medication, lifestyle changes or some combination of the three — the outcome can be triumphant, not tragic. Here are the stories of two heart disease sufferers who survived, and one who did not:

 

LISA SALBERG, Denville, N.J., 50, HCM survivor and founder and C.E.O., Hypertrophic Cardiomyopathy Association

“I had a heart murmur detected in a school physical at the age of 12. That was around 1979, 1980. I was living in Rockaway Township, N.J., attending middle school. I started noticing that I would get dizzy if I stood up after squatting, and I always heard my heart beating. I didn’t know that wasn’t normal. Up until about the fifth grade, I had been one of the faster kids in my class. By sixth grade, I was having a hard time keeping up with everybody else. By my freshman year in high school, I was cut from the softball team because I couldn’t keep up anymore.

When I was examined further I was finally told that I had Hypertrophic Cardiomyopathy, and I learned that it ran in my family, that my uncle, my sister, my grandfather and aunt had all been affected by it. My grandfather died from it at age 43, my aunt at age 52.

At age 18, I developed severe migraines, a lot of us [HCM sufferers] had them because of poor blood flow. I started taking a beta-blocker medication. Then, after a dental procedure for which I was not pre-medicated, I developed bacterial endocarditis, and then suffered a stroke.

I went on to have five different devices implanted in me, but my heart got progressively weaker. On Nov. 23, 2016, I was placed on the list for a heart transplant, and I received it on Groundhog Day in 2017. I went home with my new heart on Valentine’s Day, and since then I’ve been living without pain. I went back to work last summer and haven’t stopped since.

Having HCM means your heart is highly abnormal. The walls are built wrong, with a structure that can cause complications, including heart failure, arrhythmia and even sudden cardiac death. There is no cure for HCM, so it comes down to managing it. For most people, that can be done with medication. For about 25 percent, they will need an implantable defibrillator that will protect them from sudden cardiac arrest. About 20 percent would need to have an open-heart surgery called a myectomy. A smaller percentage can have alcohol septal ablasion, which will remove the obstruction from the inside of the heart. Another 20 percent will have to contend with atrial fibrillation and about 5 percent will move on to heart transplants, like me.

I am the founder and C.E.O. of the Hypertrophic Cardiomyopathy Association. We at HCMA have spent 22 years building centers of excellence for the care of HCM, and there are now 31 such centers, including NYU-Winthrop on Long Island; NYU-Langone Downtown in Manhattan; Westchester Medical and Morristown Medical in New Jersey.

With HCM, some days you can look very normal and feel very good. But if you’re diagnosed with it, it’s critically important that entire families get screened; it is a genetic disorder. If you’re  a parent with HCM, your child has a 50 / 50 chance of getting it. If someone suspects they may have HCM they should go to a cardiologist and get an echocardiogram, an EKG and a comprehensive evaluation with that cardiologist, including, if necessary, a cardiac MRI.”

 

CARMINA TAYLOR, 46, a consultant in Philadelphia, PA, whose son, Dorien Garnett, died of HCM at age 17 in 2009

I’ll never forget it. It was May 8, 2009, and my son Dorien — we called him DJ — was with his dad and my younger son, Taylor Garnett, in Boston, where DJ was competing in a basketball tournament. I remember I had spoken to DJ on the phone at 5 p.m. Then, at 8 p.m., I got a call from Taylor telling me DJ had passed away. I was in disbelief; I had just spoken to my son three hours before. I drove from Philadelphia to Boston that night, and when I got to the morgue, I saw the most horrible sight a mother could see. My son’s body was cold, so cold that the only place on his body I could kiss him to say a final goodbye was his hair. I talked to the doctors, who couldn’t really explain why my son had suddenly died, except that the indication was that he had some kind of heart failure.

They said they would perform an autopsy, which took six agonizing weeks before it was completed and the results were released. They determined that DJ had hypertrophic cardiomyopathy, a disease I had never heard of before.

I have since learned that there was a history of heart disease on both sides of DJ’s family, one relative on my side had it, two on his father’s side. But my son had played sports his whole life and nothing — not an irregular heartbeat, not shortness of breath — had come up in physicals.

We now know that HCM is a genetic mutation of the heart. My son was born with an enlarged heart and over time the ventricles grew thicker and the moment my son died was at the moment that his heart could not pump any more blood through its ventricles.

Once I found out that my son died of HCM, I immediately took myself and my younger son to a cardiologist to get tested to see if we had it. The tests revealed that we didn’t; so it was my husband who was the carrier of HCM.

I’ve since become an advocate for encouraging families with histories of heart disease to dig deeper and ask questions about what type of heart diseases they have had. I don’t want other families to go through what I did. For the past nine years I’ve been involved as a parent ambassador with the Children’s Cardiomyopathy Foundation. Our goal is to conduct a mobile tour to travel around the Philadelphia region to educate minority communities about HCM. There’s no cure, but perhaps we can prolong lives if the disease is detected and treated early.

I’ll always think of my son DJ as a hero. I realize now that he was probably experiencing symptoms of heart disease, but he never articulated them at all. It’s up to us as parents to ask the questions, of ourselves and our families.

 

AGNES CZUCHLEWSKI, 63, heart attack survivor, a retired corporate training exec from Woodside, Queens

In December 2015, I was preparing for relatives to visit for the holidays. This entailed much heavy cleaning, some painting, even laying rug. I was busy! The unusual part of this holiday prep was that I felt the need to sit down, even nap, frequently. I was sleeping more than my cats!  I chalked it up to being out of shape and getting old. Also, I feared I was coming down with my typical Christmas bronchitis — a personal holiday tradition since the 1960s — since I was occasionally short of breath.

As the visitors arrived, I turned to food prep.  I visited numerous stores, lugging bags, nothing unusual. However, a couple of times in the days before Christmas, I felt a strange pain in the middle of my chest, on the sternum, but it passed quickly, so I presumed I had pulled something doing all  the cleaning and carrying.

Christmas arrived: Dinner for 12 was great, food plentiful, many kudos. Then we decided to all go into the city on Dec. 28 to visit a museum. My husband and I took the subway. Coming up the subway stairs, I once again noticed the pain in my chest, worse this time, and shortness of breath. As we walked over to the New-York Historical Society, I realized I was really having a problem!

We gathered the family together and then walked around the museum for about an hour with the pain getting worse. But I certainly didn’t want to ruin everyone’s day by leaving. When I excused myself to take an aspirin, I thought the problem might be my heart.

We then said our good-byes, blaming our leaving on my “gastric problems.” As we got into the cab, I told the driver to take us to Lenox Hill Hospital. It was then I told my husband how severe the pain had gotten. Once in the emergency room, I was well looked-after. The E.R. doc determined that I was having a heart attack, had a clot in one of my arteries and would need an angioplasty and stent. The next day’s surgery went well and I was home by New Year’s Eve.

Prior to this I never had any heart problems.  Granted, I had a family history of cardiac disease, had high blood pressure and diabetes, but all appeared to be under control. Additionally, I never experienced the “typical” heart attack symptoms, like pain down the left arm or the intense chest pressure. I had the faint pains and shortness of breath, then the intensifying central chest pain that went through to my back. Many of my friends said they would never have thought of going to the E.R. with what I was feeling.  This was definitely a case of “listening to your body” and, regardless of family plans, taking timely, life-saving action.

I lost 25 pounds, and started walking a great deal more. I’m a part-time volunteer docent at the Bronx Zoo and I lead tours. Thats great exercise. There’s also the matter of risk factors. I’ve always had high risk factors, I’ve had a family history of cardiac disease, high blood sugar, high blood pressure. I’ve become more diligent at watching my numbers but also really following up and listening to my doctors and all that good stuff.

Things like family history you can’t change. But things like keeping your blood pressure and A1C number where it should be, that’s stuff you can control. I’ve  found out that I’m sodium sensitive, so I’ve cut back on my salt intake, and I’m eating a lot more whole grains, cutting back on refined sugar.

From all this, I’ve learned that heart disease takes a lot of different forms. It’s not one-size-fits-all. My advice is that if it [your symptoms] feel different than what is normal for you, then get medical attention.

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