Can you tell me a little bit about your SADS journey – from diagnosis to where you are today?
I remember having episodes in early grade school. I would get in trouble all the time for “daydreaming.” Many decades later this turned out to be Ventricular Tachycardia. I remember having several episodes when I was a Cub Scout. I’ve had probably hundreds of cardiac arrests in my life. My heart has always restarted itself, except for one time.
I went for a long period of time when I do not recall having any episodes. Then one day I was out in the woods camping and getting extremely exhausted in the daytime. Exhaustion has often played a role in my having episodes. The next morning, upon waking, I realized I had just had another episode. Coming back to consciousness was frightening, especially since no one could tell me what these were. I didn’t have any more episodes between early high school and when I was in the army. That one was a dandy. I was described as being blue lipped. Then I went all the way from that episode until I was 40 years old without an episode.
I used to run a lot. Running reduced my pulse to about 38 beats a minute. I didn’t think anything about it. One day I contracted the flu but I kept running, thinking I could run my way out of the flu. Upon returning home, my roommate said, “You look white.” I said “I don’t feel good.” I sat down and immediately had a cascade of episodes. I came out of the first one on my own. I used to have only one a day and they never occurred two days in a row. I thought, that’s my one for the next 15 to 20 years. About five minutes later another episode happened. They kept coming closer together and longer in duration. My roommate called the paramedics. They took me to the hospital and it happened again while I was wired to a cardiac monitor. This was the key to me being diagnosed with Long QT. Whenever I’d had them before, once it was over, there was no residual sign to indicate what had occurred.
I was moved to the Salt Lake City VA Hospital. Dr. Michael Vincent’s assistant came to interview me. At the time, Dr. Vincent (who founded the SADS Foundation) and one doctor in New York were the only experts on Long QT in the U.S. Dr. Vincent did some tests and diagnosed me with Long QT. My lifestyle has always included regular weight lifting, intense physical activity and skydiving. The cardiologists at the hospital said “He can’t have long QT, because Long QT episodes are associated with physical stress or high adrenaline.” Here I am with high adrenaline and high physical stress almost daily. However, Dr. Vincent was insistent that I had Long QT.
I was introduced to Dr. Mark Keating. He asked if I would consent to genetic testing to investigate my particular Long QT since, at that time, my expressions of it were unique. I agreed. Since I had a son, they brought him to Salt Lake. My son and I did some extensive genetic tests with Dr. Keating. Here’s my claim to fame – Dr. Keating told me that my son’s and my “non-standard” LQT2 genes made it possible to identify the chromosome where the Long QT gene resides. Dr. Keating almost won a Nobel Prize for this. He later told me I was the first person in the world that was discovered with Long QT Type 2.
I was put on several different beta blockers. I could not tolerate them. I really felt like I’d rather die than live my life like that. I couldn’t do anything. All I wanted to do was sit. I was always angry and frustrated. So I kept taking myself off beta blockers resulting in subsequent episodes. Luckily I was always near a hospital when these episodes happened because they became more pronounced and were followed by longer periods of unconsciousness.
About 1990, I received a pacemaker. It increased my heartbeat to 70 beats a minute. I was told that a slow heartbeat and Long QT was a recipe for tragedy. The pacemaker changed my life. It removed the question of when the next episode would appear.
In the early 1980s I started Skydive Utah. In 2011 I attended a skydiving conference in Reno, Nevada. While there I contracted food poisoning. Three days after I returned to Salt Lake I had a Long QT episode at home as a direct result of the food poisoning. I thought that was impossible. My companion drove me to the VA hospital at a high rate of speed. The ER doctors asked me “What’s going on?” I said, “Well, I’ve got Long QT, I’ve got a pacemaker and I just had an episode. It’s impossible. The pacemaker protects me.” The ER doctor had me admitted and sent me to the cardiac floor upstairs. At three o’clock in the morning I went into cardiac arrest, regardless of the pacemaker. This time I did not recover on my own. They performed CPR, intubated me and used defibrillator paddles to restart my heart. This episode resulted in my old technology pacemaker being replaced with an ICD.
In 2019 I had just landed from a skydive. With the excitement over, I picked up my parachute and started walking back. Without warning it felt like somebody had shot me in the back. The ICD had fired and put my heart back into rhythm. There have been no heart rhythm anomalies since then.
How has the SADS Foundation been helpful for you and your family?
In the past, when I’d go somewhere to get medical help, I was always asked if I was allergic to anything. When I mentioned Long QT I would have to describe Long QT. Now, I just say, I’ve got SADS and/or I’ve got Long QT. SADS has gotten the word out and that is an immense relief!
What advice would you give to someone who was newly diagnosed with a SADS condition?
I would say take your next steps carefully. However, you can probably find an activity to let you continue living a happy life. To me sitting in a chair, because you’re afraid to do anything, is not living. You’ve got to find what you can do. Be careful. Listen to your doctors, listen to the cardiologists. If you qualify for an ICD, take it. It will definitely change your life. In my opinion, an ICD is the same thing as carrying one of those backpacks around. I feel like the ICD is my guardian angel.