Balancing caregiving for a transplant patient and being a mom can feel like an overwhelming task. Amber shares her experiences of caring for her son facing the unimaginable challenge of heart failure and the urgent need for a heart transplant.

Amber, Mother of Gavin

Q: On February 28, (Amber’s birthday) Gavin, at just 18 years old, underwent open heart surgery during which he received an LVAD after unexpectedly being diagnosed with heart failure, despite having no prior medical issues. Gavin was living a normal life as a teenager, preparing to graduate high school and attend Penn State University. How do you manage the balance between letting him experience a “normal” teenage life while also being cautious as a pre-transplant patient?

A:It’s hard because I’ve seen him go through this for years, and I can’t fix it. Especially because he wants to be normal and do normal things, and he can’t. It’s mentally and emotionally draining after all these years. I try not to stretch myself too thin, which is important for any mom. When he is hospitalized, I try to take a walk when he is doing well. I have also met other moms with kids in similar situations, which has been helpful. I have people checking in on me every day by phone and text. As a family we try to focus on the positives and enjoy the times we do have because things could be so much worse. I want to preserve the time we have with CJ and focus on the good things as long as I can.

Q: As Gavin prepares to graduate from high school soon and plans for college, how do you anticipate aspects of being his caregiver to change?

A: Gavin is very self-sufficient and intelligent and has taken it upon himself to learn every aspect of his care. His Dad works on campus at Penn State where Gavin will be attending, and is trained in LVAD care, so we do have that “comfort cushion” that some other parents might not have. When Gavin goes off to college in the fall, I have the same worries that every parent does, compounded with the stress of a future transplant. Gavin is a great scholar, so he has learned all about his condition. However, when you first hear the words “your child needs a heart transplant,” it feels like you’ve just dropped several floors in an elevator. While we understand that the world of transplants has come a long way over the past several decades, and the odds stand in his favor, it’s still very scary. As his parents, we stand on our Faith, but we’re still human and have the fear of the worst-case scenarios and the “what ifs.” On the other hand, Gavin has complete confidence in his medical team and science, and sees a transplant as something that will fix him so he can go on to lead a full, long life.

You can provide hope to the thousands of people like Gavin who are waiting for a transplant. Learn more and sign up at www.donors1.org/register