Hi! My name is Holly Mulder. I am 29 years old and I have CPVT. I live in Charlotte, NC with my husband and English Bulldog, Oliver.
When I was 22, I started training for my first triathlon. A few years later, I had completed over 20 short triathlons and was a few months away from the big day when I would marry my husband, Ockie. I had even competed for Team USA in amateur world triathlon championships.
But then things changed. It was a normal evening at the YMCA, and I had somehow convinced my sister to come swim laps with me (she hates swimming). Two laps into our swim, she passed out in the pool. As the lifeguard and I pulled her out of the pool, she regained consciousness and gasped for air with no recollection of what happened. Others that witnessed what happened thought she may have had a seizure. Many appointments later, a local cardiologist suspected that she may have CPVT and referred her for genetic testing.
A month or so later, four of the six members of my immediate family had been diagnosed with CPVT – my dad, two sisters, and myself. I have another sister, a fraternal twin, who does not have it. We were all so physically active growing up and could not understand how this condition had only manifested now.
On top of this, my CPVT diagnosis was especially challenging for me. I also struggle with advanced stage 4 endometriosis and have had three surgeries since the age of 19 to alleviate the painful lesions and associated symptoms. I initially began exercising so regularly as part of my treatment plan, which helped my symptoms. After my CPVT diagnosis, I felt as though I would never feel like my happy, healthy self again.
But then our local cardiologist referred us to Dr. Michael Ackerman at the Mayo Clinic in Rochester, MN. He and his team have given us all so much hope and the confidence to continue doing what we love despite what seems like a diagnosis of limitations.
With encouragement and support from my sweet husband, I was able to continue racing in a few triathlons with him as my designated swimmer (since swimming is known to trigger CPVT events). We’ve also become avid golfers and enjoy low key days on the course as a new form of exercise. Our family has become closer since all of our diagnoses, and we rely on our faith to carry us through the difficult times.
Today, I take nadolol once daily and flecainide twice daily. I also underwent LCSD (left cardiac sympathetic denervation) at the incredible Mayo Clinic Rochester and visit there annually. I am still able to run or bike almost every day, but carefully monitor my heart rate. I now satisfy my competitive nature by submitting homebrew beers to competitions and by attempting (and usually failing) to beat my husband at golf. CPVT might alter your path, but it can never change who you are. I want to encourage other SADS patients to find their outlet, be themselves, and do what you love. Make friends with your condition instead of seeing it as the enemy within you.