I have a strong family history of relatives experiencing “heart attacks” (or perhaps cardiac arrests) and dying at a young age. When I was a kid, I thought everyone eventually died of these “heart attacks”.  In my family, the deaths were instant, and happened while relatives were doing everyday activities, such as walking down the street, watching tv, or sleeping. That was a part of our family story.

I suppose that this encouraged me to live a healthy lifestyle.  I don’t smoke, drink, eat red meat or fried foods. I even studied nutrition and exercise physiology in college and work in the field of wellness. I wanted to live a long healthy life.

I’ve always had a low heart rate and low blood pressure. I credited this to my healthy lifestyle. At the age of 40, I was however diagnosed with ulcerative colitis. I was being seen in Northern Vermont, where I live, but I went to New York City in order to get a second opinion. When they prepared me for my colonoscopy, my heart rate was extremely low, in the 30s. The surgeon, who’d seen me before, said that the procedure could be performed, but made me promise to see a Cardiologist, and wear a 24-hour Holter Monitor when I returned to Vermont. It was the results of the 24 hour halter monitor that identified my LQT.

I started seeing an Electrophysiologist, who recommended beta blockers, and told me to consider putting in an ICD (implantable cardiac device).  I was stubborn – I was healthy, a hiker and runner, had no symptoms and I didn’t want an ICD. My parents and siblings had EKGs performed in New York City, and there was no evidence of LQTS. I agreed to go on beta blockers, and stayed on them for a year or two. I was miserable. I struggled to exercise, and felt depressed. I decided to go off of them.

My son was on the US Ski Team at the time, and we frequently traveled and exercised at high altitudes. I never had any issue with altitude and my heart. It was 40 years later, when I was 61, that my LQT almost killed me.

I was visiting a friend at Winter Park, which is at 10,000 ft. elevation. We were Nordic skiing, and I remember saying that I really didn’t feel well during my time there. Fortunately, upon my return home, my friend was driving me back to the airport and I fainted in the car. The EMTs arrived very quickly and brought me to a small mountain clinic.  I remember that the Physicians were pretty freaked out when they saw that I had LQTS. They rushed me, by ambulance, to a Denver Trauma 1 hospital.

In the ER, I was feeling OK – they thought that my fainting spell may have just been due to the altitude. While waiting to see the specialist, I however tried to get up to use the bathroom, and when I sat up, I went into Sudden Cardiac Arrest (SCA). I was unconscious for 45 seconds and although I came to on my own, my experience was terrifying.  I was semi-conscious the entire time – I remember screaming through the SCA. It was as if I was drowning. When I opened my eyes, and was fully conscious, I remember seeing six health professionals looking down at me as though I had died. That image was stamped in my brain for years.  They transported my right up to the cardiac ICU, ran more tests and I had an ICD implanted the next day. They kept me there for four nights, and then I returned to Vermont.

I was put back on beta blockers for a few more years. The meds still made me miserable, tired and depressed. Keep in mind, this was 2/5/2020 and COVID was just about to virtually shut down the world.  It’s therefore difficult for me to determine the true cause of my PTSD.  I finally got genetic testing – my cardiologist wouldn’t order it at first, so I had to really advocate for myself. It turned out that I have Long QT Syndrome Type 5, a very rare subtype. I met with the Mayo Clinic a few times and had all my testing redone. The doctors all said that he was not sure what triggered the SCA – and that I should be careful with substances that can cause tachycardia, avoid large magnetic equipment and that it was probably best to avoid high altitudes, otherwise, I could return to my normal life and activities.  In addition, I read a study that determined that LQT5 patients did not benefit from beta blockers.  I shared this article with my Physicians in Vermont and at Mayo and I was given the ok to go off of the beta blockers.  I instantly started feeling happier and more energetic.  I felt back to myself.  My family noticed the improvement immediately.

A PTSD therapist also really helped me get through the trauma of my SCA, and the panic that came with remembering the event. It took two years to find a therapist worth seeing, but he was wonderful.   I can still see and feel the ICD in my upper chest, but it doesn’t hurt or prevent me from doing anything. I know it’s there, you can see the scar and it protrudes, but it’s comforting to know that it’s protecting me, in case of a future arrest. I’ll admit, I’m still a worrier, but now my worries are about relatively normal things for a 65-year-old, such as my health and the health and wellbeing of my husband, my children and grandchildren.

SADS has been a great help to me.  Sharing concerns and information in support groups has been especially valuable. In my small part of the country, there isn’t a great deal of knowledge or information about these conditions. I don’t think I would have ever met another person with LQTS if it weren’t for the SADS Foundation.