Can you tell me a little bit about your SADS journey?
I’ve always been very healthy and athletic, always involved in running or walking. When I was young, I ran track, cross country and participated in a lot of 5K’s and a few Tough Mudders as well as a half marathon.
On January 6, 2021, late in the evening, my husband and I were in the kitchen just before heading to bed. At the time, I was coughing a lot due to undetected pneumonia and then suddenly collapsed and went into Sudden Cardiac Arrest. My husband performed CPR until the paramedics arrived. I went back into Cardiac Arrest several times and was placed on life support. My body was placed in a hypothermic state to protect my organs. It was discovered that I also had three strokes due to a blood clot and my brain function was not showing positive signs. It did not appear that I was going to make it based on the brain damage but also that I was having seizures when doctors would attempt to bring me off of sedation.
Six days later, after receiving brain scans that were ‘not what they hoped for,’ I woke up. It was a tremendous miracle and a blessing for everyone. Shortly after waking up, I had a dual chamber defibrillator/pacemaker (ICD) implanted in my heart and placed on beta blockers. Originally the doctor thought I had Long QT Syndrome, which we later discovered that I did not.
I had physical, occupational and speech therapy for several weeks and was eventually released to continue to exercise and continue normal living.
During my six month follow up appointment, my doctor said, “I’d like for you to get genetic testing so we could see what kind of Long QT Syndrome you have.” When the results came back, they called me and said “you have ARVC” and notified me that I immediately needed to have close family members tested. I immediately had to stop any physical activity or exercising. It was a really quick turnaround to get my children tested.
My older two children (ages 17 and 15 at the time) tested positive for the ARVC gene and quickly had to stop all physical activity or any sports.
My 15 year old son is very athletic and involved in football, track and weight lifting. When we found out about the diagnosis in the fall, we had to pull him out of football immediately and he was absolutely devastated. But at the same time very grateful to know about the disease and do what we need to keep them healthy. Based on the initial cardiac workup, they have been cleared to resume activity but they will be tested every year with a full cardiac workup. They recently had their annual appointment and are fully cleared and healthy, which we’re very grateful for.
They know every year that their situation could change and could be required to stop all physical activity. We know this in the back of our mind and we’re prepared for it, but we don’t ever want that to happen. We’ve been connected with some really fantastic doctors and an amazing support system, so we are grateful for that.
My other family members completed genetic testing (brothers, aunts, uncles) and of everyone tested, my mother was the only one who tested positive for the ARVC gene and all others were negative. My mother ended up getting a loop recorder placed in her heart and placed on beta blockers.
How have the recoveries been from your ICD surgeries?
At first it was extremely uncomfortable and just strange knowing it was there. Certainly, you have limitations and you can’t lift a lot of things. In May of 2021, I had to have the leads replaced because they were pulled out and not functioning, causing my heart functioning to decrease. It was a very scary surgery. I have certainly taken it more seriously this time than I had the first time I had it put in. I would just advise anyone to listen to the restriction of your doctor because you do not want surgery again, it’s not pleasant.
Can you delve a little more into how it felt to get your diagnosis as a runner, and how you went from getting a diagnosis to where you are today?
The doctors gave me a list of things that I could do. And it just really felt to me like, “the most you can do is go play checkers.” That’s about it. In my head that’s what I was hearing. I think it’s really taken about two years for me to fully recover; my body had died. My kids have really encouraged me to keep positive since they’re still very active and knew there were things I could do that would eventually make me happy.
We recently got a family gym membership. My husband and I will walk 15 minutes. And then I do very light things to keep the strength in my legs. Being in the environment of the gym helps me feel normal again. It’s something my family and I can all do together. I’ve also found enjoyment in pool walking using resistance. I don’t get my heart rate up, but I am still moving. It’s different and new but good for me.
What advice would you give to someone who was newly diagnosed with ARVC?
It’s a whirlwind of emotions. The first thing that I would say is take it seriously. Do as much research as you can and connect with people who have the disease, that was the most helpful thing for me. I connected very quickly with the SADS Foundation and some ARVC groups on social media.
Try to stay positive. I went into a little bit of depression thinking “ I can’t do what I used to, I was very active,” and that was very challenging. I started to think about a different mindset of what I CAN do, not what I cannot do. I may not run around and do sports activities with my kids anymore, but I could sit and watch them on the sidelines and have joy. It’s a different kind of joy, but I am alive, so I learned a new joy.