When Joelle was 12, she passed out in church – and testing revealed that the culprit was ARVC. And it progressed quickly – a year after diagnosis, at 13, Joelle got an ICD to help regulate the “electrical chaos” in her heart.
Joelle had been a competitive figure skater before her diagnosis, and returned to the rink after her ICD implantation while being carefully monitored by her doctors. But it was hard for her to compete, and just a few months later, Joelle went into heart failure – and required a transplant.
She spent 48 days in the hospital before receiving a donor heart, and the transplant at Mayo Clinic was successful. Six weeks later, she was able to get back to the rink – and now competes as a figure skater again. Joelle now wants to go to med school and become a surgeon when she’s older, specifically pediatric cardiology.
“If it wasn’t for my donor and their family, I wouldn’t have received this heart, and might not be here today,” says Joelle. “it completely changes your life – it’s amazing.”
We spoke with Holly, Joelle’s mom, about the heart transplant process, and her advice for other families.
What challenges did Joelle face after diagnosis?
From my perspective, some of the biggest challenges were mental challenges, including being told that Joelle’s activity would need to be limited. She was a junior high athlete at the time, and very competitive. Her sports were her drive, and to be told that she had to stop playing volleyball and basketball, and stop figure skating, was difficult for her to hear. Dr. Michael Ackerman, her doctor, was very sensitive to her mental health, and allowed her to continue to skate while being supervised and educated about her limits so she could enjoy life safely.
What would you want other ARVC families to know about the process of heart transplant, especially for a young person?
Make sure to educate yourself! Everybody’s journey is different, and patience is very important, even though it’s frustrating to be patient. It pays off in the waiting process – while you’re waiting for a heart – and during the healing process. You have to be willing to deal with the deck you’ve been dealt, and just go with it.
Not only is the transplant process challenging for the patient, but it is also challenging for the caregiver. It’s important for the caregiver to take care of themselves. And make sure to take advantage of the time you’re in the hospital with your child. Although you’ll be well-prepared for discharge, you won’t truly know the challenges you will face until the time comes.
This process can be long and exhausting, and allowing your child to be both educated, and be a part of the decision-making process, is instrumental to success.
What advice would you give to other parents who have recently received an ARVC diagnosis?
Make connections with other people. Dr. Ackerman connected us with another patient going through something similar, and that was our success. They helped educate us, and helped us learn more about the process. They were able to give us advice, be someone we could bounce things off of, and were there when we needed to vent. That’s what you need the most – a support system.