Gaining independence with managing one’s own medical care is a process that most people must experience as they become adults. For those who receive specialty care, the process – called “transition” – can be a little more complex.
This is especially true for people who were born with congenital heart defects (CHD). Their transition process typically begins around ages 12 or 13 and continues after transfer. It requires an organized clinical process with the goals of:
Improving adolescents’ knowledge about about their CHD
Supporting self-management and advocacy skills
Learning to navigate a complex medical system
Coordinating integration into adult congenital heart disease (ACHD) care around ages 18 to 21
Nearly two decades ago, when she was 3 days old, Elizabeth was diagnosed with a CHD called Tetralogy of Fallot. Now 19 and still receiving care at OHSU, Elizabeth shares more about her heart story and her tips to help ease the transition from pediatric to adult cardiac care.
Can you walk us through your CHD diagnosis and the pediatric portion of your treatment?
My mom had some complications when she was pregnant with me, so I was born at a hospital in Eugene about two months before my due date. A few days later, I was diagnosed with a condition called Tetralogy of Fallot, which is a combination of several different heart defects. My heart valves were closed and needed to be stented, and I had some holes that also needed to be repaired, along with the pulmonary valve. I had my first surgery at OHSU Doernbecher when I was 5 or 6 months old (once I had met the weight requirement to undergo open heart surgery).
I had a number of other procedures and surgeries at Doernbecher as a young child but I don’t remember much of those. Then, when I was in the third grade, I had an open-heart surgery to replace one of my valves. I was at Doernbecher for eight days and, in retrospect, I was just starting to be old enough to understand what was happening, though not to a great degree.
Fast forward to last year, right around the time I started the transition process of switching care teams and moving over from pediatric cardiology to adult cardiology (more on that later). I was told that I needed a procedure because my stents were starting to close, causing my oxygenation levels to drop.
Tell us more about the transition from pediatric to adult CHD care – what was that like for you and your family?
I met with my new cardiologist, Dr. Lidija McGrath, and I totally threw her into the deep end by telling her I had not been doing well at all. She was proactive and immediately ordered a bunch of tests, which is how we found out I needed a cardiac catheterization procedure last November, and another one this past June.
Because I was an adult, I was the one tasked with navigating my medical care. For the first time, I was solely responsible for providing insurance information, answering phone calls, scheduling appointments and sharing my medical history with a new team of providers. It was overwhelming and I didn’t feel prepared for all of it, particularly providing my medical history since there’s so much of it that I don’t remember. I was going back and forth with my parents to help fill in the gaps.
My mom and I wound up sitting down together to write out my entire medical history, including all of the procedures and surgeries and the dates that they took place. That’s been really helpful.
Are there any other learnings or pieces of advice that might be helpful for other young adults transitioning from pediatric CHD care?
The transition to adult care was a little shaky, but a lot of that had to do with immediately requiring surgery shortly after I became responsible for my own medical care. It was hard. I didn’t know what I needed to know or what was needed from me.
“Why don’t you call my mom?” was something I wanted to say often – and there have been a few times when she was able to step in and assist.
That said, here are a few things that were helpful for me:
- Write it down. Talk with your family and pediatric provider(s) and come up with a few lists:
- Things you’ll be expected to know as an adult patient (e.g., detailed medical history). As mentioned above, working with my mom to document my medical history in one cohesive, easy-to-access place has been extremely helpful when I’m faced with questions, particularly about procedures and surgeries that I don’t remember at all.
- Questions you’ll be asked when scheduling routine or specialty care (e.g., insurance info).
- Other considerations that are specific to cardiac patients (e.g., which cardiac specialists like cardiac anesthesiologists need to be present or available when undergoing other procedures or surgeries, even routine ones).
- If possible, ease into the transition. When I was a teenager, my parents and I – along with my pediatric cardiologist, Dr. Mark Reller – decided that I would gradually take on a bit more responsibility so I wasn’t suddenly doing everything myself. Here are a few examples of what those responsibilities looked like for me:
- We made a conscious effort for me to be the primary person talking or answering questions, rather than looking at my mom to answer questions and advocate for me.
- Sometimes my mom would take me to appointments but stay in the waiting room. I went in alone but she was just outside if I needed her.
- Find a good therapist. My therapist had leukemia as a child and we can really relate about the experience of switching from pediatric to adult care because she went through something similar with her oncology teams. She’s been so helpful in sharing ways to navigate the process and all of the feelings that accompany it.
- Ask questions, and ask early. I know this sounds totally cliché and obvious, but I wish I had asked more questions when I was still seeing my pediatric cardiology team. I saw Dr. Reller my whole life and had so much trust in him and didn’t yet know my new care team. Initially, I didn’t feel like I had the same space to ask questions.
- Trust your team. I went in to see Dr. McGrath with a whole host of problems, and I had to put a lot of trust into her right away (and vice versa). She’s proven to be a great fit and was able to dive right in. I can send her a MyChart message anytime and she’s really good about responding and providing explanations. Everyone at OHSU has been supportive, so that’s been extremely helpful with the transition.
- Know that thing will be different. Because of the relationships I’d formed with Dr. Reller and my other pediatric providers, I was resistant to change. I had to modify the way I looked at the system – I was no longer being taken care of as a kid. I’ve found that the doctors are much more level with me, and there’s so much more transparency around risks and benefits. Signing my own consent form was a new experience and something that surprised me when I went into my first procedure as an adult. It was very strange and a little bit scary.
- The transition affects family, too. I think my parents were actually a little bit more ready for me to take on my own medical responsibilities than I was. As I was easing into it, they were able to take small steps back. One thing that was challenging for them was that they weren’t able to have the same access they had previously had – there were a few instances where they wanted to call on my behalf to help answer questions or otherwise advocate for me when I was physically able to do so myself.
How are you doing today?
My last cardiac catheterization procedure this summer fixed a lot of the problems I was experiencing. I’m on the mend and feeling much better! That said, scans show that my valve is starting to deteriorate so I’ll probably be due for another open-heart procedure in the next three to five years. With my condition, it’s likely that I’ll have to undergo procedures for the rest of my life, which is pretty typical for someone with Tetralogy of Fallot.
I’m in college now and am majoring in psychology with a minor in human biology – I actually just got an internship to work in a psychology lab, which I’m very excited about! I’m also a barista and meet a lot of fun people where I work. Outside of school and work, I like disc golfing, hiking and walking; I wasn’t able to do a lot of those things prior to my last procedure because of my heart, but now I can so I’ve been able to be much more active. I also love just hanging out with my friends and my boyfriend, playing video games and watching movies.