Can you tell me a little more about your journey?
My first symptoms of any cardiac issues started in August, 2011 while I was on a jog while living in St. Louis. Because I was a competitive athlete my entire life, I thought that I was just out of shape now that I’d started working full-time after college, and I ignored my symptoms of near-syncope and irregular heartbeats. I moved to Thailand for the next two years and had symptoms throughout that time as well, even while hiking in remote areas of Nepal.
Within a month of returning to the US I experienced a cardiac arrest at a Top Golf in September of 2013. After doing a stress test I was immediately diagnosed with CPVT and put on a beta blocker medication. A little over a month later I had another cardiac arrest after a power yoga class, so we decided that an ICD was the right path forward for me. It’s important to note that I was on beta blockers during my second cardiac arrest, but my doctor at the time did not have me on extended-release beta blockers and did not explain to me that there would be peaks and valleys of effectiveness during the day. I never asked the questions necessary to know this could be the case, and I nearly paid the price.
After my diagnosis and cardiac arrests, I went back to work and continued to live a fairly normal life. I changed my habits of adrenaline-seeking activities (I had just learned how to fly a paramotor before getting diagnosed) and learned that you don’t need caffeine to keep your energy levels up. I felt fortunate to be alive, but I also struggled at times to cope with the fears associated with the condition and having a little computer wired into my heart.
Fast forward to late December 2019, I was on a winter ski trip in my campervan with my dog visiting Jackson Hole. Just before boarding the tram to the top of the mountain my defibrillator shocked me for the first time. The doctors at Jackson Hole’s hospital are familiar with cardiac issues caused by the high elevation, but they had limited experience with how to treat my electrical issues. I was having about 60 PVC beats/minute and they would not give me more beta blocker until I finally demanded it, after which my PVC beats dropped to 2/minute. During that day they spoke with OHSU in Portland, OR to get direction on how to treat me, and after reviewing my scans, the head on-duty electrophysiologist at OHSU saw what he thought were ablatable abnormalities in my heart. We scheduled a heart surgery for four days later, and my buddy came to Jackson Hole and drove me back to Oregon since I was too weak to drive.
During my heart surgery at OHSU they found places in my atrium and ventricle that were misbehaving, so they performed ablations on those two areas. At this point, they believed my original diagnosis of CPVT was potentially incorrect and that they had cured my problems. I wore a Zio patch and they found nothing to indicate CPVT was still a concern. I ceased taking my beta blocker medication, resumed flying paramotors, and got back to life as normal before my original cardiac arrests. In August of 2020 my doctor looked at my ICD records and questioned a few instances of v-tach and v-fib. It turns out that every time I flew my paramotor I was having cardiac events. The conclusion was that I had multiple problems with my heart, that the most recent surgery fixed some of those problems, and I would continue to live with the CPVT diagnosis.
Going forward I will continue to carefully asses my hobbies to limit the risk of having adrenaline in my body. I still mountain bike, but I don’t get aggressive. I no longer paramotor, but I play golf very frequently. I have found that CPVT will always be a part of my life, but, like anything, it gets easier to manage the longer you do it. Mostly I feel fortunate to have survived my cardiac arrests and I will never take that or the people who helped me for granted.
What advice would you give to someone who was newly diagnosed with a SADS condition?
First: A condition like CPVT will always be a part of you, but it doesn’t have to define you. Stay in tune with your body to learn/know your limits and understand what causes your
body to have elevated heart rates and release adrenaline. Understanding the limits of your body will allow you to continue doing the things you love, albeit maybe in a different way, without putting yourself at risk.
Second: You are your best advocate. Ask all the questions you can think of to gain further understanding of your condition and situations, and don’t be shy. Bring people with you to appointments that are great at asking inquisitive questions and discussing what-if scenarios. If you find yourself in a situation where you know the answer for your body, be firm in getting the response you need. Two examples of this related to my Jackson Hole incident;
- When the doctors would not give me more beta blockers I asked “If I demand that you put beta blockers into my IV, will you?” They told me that they would, so I demanded it, and it might’ve saved my life.
- When I spoke to the doctor at OHSU on December 31st he did not have availability to do my surgery until late January. I told him that wasn’t good enough, because of how I was feeling I wasn’t sure if I’d live that long. I know I could have gone elsewhere, but I pressed the issue (politely) and he did my surgery on January 3rd.
How has your ICD impacted your life?
Initially, everything happened so fast and it was surreal to be getting an ICD for a heart condition in my late 20’s. Then came the thoughts of having a computer wired into my heart, I mean how many times do you get on a computer and it freezes or does something dumb? Initially, it was really scary to have the ICD, but it got easier with time, because it’s a very necessary “parachute” to have in case of emergency.
After my first (and only) shock in late 2019, I had what I refer to as “PTSD Dreams” about my ICD shocking me. I would wake up from sleep thinking that my ICD really had shocked me, because I felt the pain. I would send a scan to my doctor and there would be no record of it. As time goes on I have this dream less and less, but I do encourage people to go to counseling if you are struggling with this, because it’s real.
How has the SADS Foundation been helpful to you?
The SADS Foundation is a wealth of knowledge. I wish I had started listening to the webinar recordings earlier. All of the resources available through SADS will help arm you with better understanding and better questions during your visits with your doctors. I have asked questions on several occasions to multiple electrophysiologists around the country, and when they find out I asked the question because I had learned something through SADS, they always say something to the effect of “Oh I’m glad you’re utilizing the SADS Foundation as a resource, they are a great organization.” Utilize this free resource to improve your life living with a SADS condition!