Can you tell me a little bit about your SADS journey – from your first symptom to where you are today?
I had an arrhythmia while I was driving in August of 1998. While I was in the hospital, the doctor noticed a prolonged QT interval. My mother had passed away suddenly five months before this incident, but had never been diagnosed with a heart condition. I was started on a high dose of a beta blocker and had an ICD implanted before leaving the hospital.
My doctors reviewed an EKG my mom received before she passed away and identified a prolongation. The doctors diagnosed me with Long QT Syndrome.
At the time, right after the surgery, I was getting ready to transfer colleges. I was given a pamphlet for the SADS Foundation and noticed a doctor in that area was a Scientific Advisor. I saw him through my graduation in 2001. During that time, my family was part of a research study and had genetic testing; my LQTS was confirmed through the testing. My dad did not have the mutation.
For a few years, I was able to attend a young ICD connection conference in Michigan. I’d had my device for twelve years and it was the first time I met someone else close to my age who had an ICD. I still have friends from that conference to this day.
In September of 2019, I reconnected with the doctor I had during college. This doctor wanted me to undergo genetic testing again but through a commercial lab; the mutation was reconfirmed. I started participating in the SADS Foundation ICD Support Group, and have been a part of that group for two years. I’m unique in the group in that I’ve had my device for so long without any shocks. I’m able to share my frustrations with the group while encouraging those whose devices have been lifesaving.
What advice would you give to someone who was newly diagnosed with a SADS condition?
Your decisions should be made both by you and your doctor – not just by your doctor. Patients need to be well educated and given time to make choices about treatment options like an ICD. A medication or simple procedure are sometimes options, too; make sure you’re making an educated decision.
How has your ICD impacted your life?
It’s been a long journey for me – which has been negative financially, physically, and emotionally. I’m on my fourth defibrillator; two of my first three malfunctioned.
All of my surgeries have been physically painful; I’m afraid there could be a recall; and I’ve had to go through four surgeries with very little evidence that the device is needed in my particular case. The recovery from the surgeries has taken a long time, and I’ve always had to choose a job that has the best possible healthcare coverage, especially before medical care for preexisting conditions was guaranteed to be covered by insurance.
Two weeks before my last ICD replacement, I had six years left on the battery, but then the device suddenly malfunctioned. It beeped every six hours, would wake me up, and I had a short time frame to make the decision to replace it. If I hadn’t had it replaced, I would have been stuck with a device that beeped every six hours for two years before it finally shut down.
My ICD brings me negative thoughts daily anyway, but also unnecessary negative thoughts regarding my mom. I had a great relationship with her and I don’t want to have negative thoughts, which are only brought on by the fact that I have this device in me. It is both post-trauma stress from her sudden passing and my prior surgeries, and pre-trauma stress every time the ICD is about to be replaced.
I don’t feel like the ICD was a shared decision between me and the doctor. Medicine is supposed to do no harm, but in my case, the ICD has been harmful. For most, this is a life-saving device. For me, it has been life-depleting. I have been on a low dose of the medication for a couple of decades now and am looking forward to other treatment options if ever needed.