A Long Journey to Transition

I was two years into my advanced practice nursing training, completing a specialty rotation in pediatric cardiology, when my preceptor walked into my office with an article printed out from Congenital Cardiology Today entitled “Starting a Transition Program.”

“Read this article,” she said. “This is the work you should be doing.”

As I started reading through the article, I became increasingly frustrated, but also inspired.

I have congenital heart disease. I have spent countless hours of my life with my cardiac team. I have a zipper down my chest with matching chest tube scars and vestiges of PTSD from my most recent surgery, where the pain and incapacitation shocked my formerly “healthy” 23-year-old self. And yet, I had never heard of “transition.”

Every year, I made my annual trek to my pediatric cardiologist, my husband and son in tow, and sat on a kid-sized exam table in a room adorned with cartoon animals. Sometimes I even requested Disney movies during my echo.

Transition to adult care? Leave my cardiologist who had been a staple in my life for nearly 30 years, who was there just hours after my birth guiding my family through emergency heart surgery, who championed my desire to become a competitive gymnast despite my physical limitations, and wrote my letters of recommendation for college and graduate school? I don’t think so.

But hadn’t things been more difficult and stressful without a provider who understood the complex challenges that came with adolescence and young adulthood? After all, my “transition” education consisted of “don’t get tattoos or piercings, I had a patient with the same condition as you, he got a tattoo on his ankle and died.”

Once I got older and especially after I became a provider myself, I knew this was anecdotal and largely untrue for the majority of patients. After all, antibiotics exist. I considered whether my dad paid my cardiologist off to put the fear of God in me, but came to the conclusion that he is of an older generation and probably hadn’t spent a lot of time reviewing the current literature on tattoos and piercings in people with CHD.

But what about the bigger stuff—the more important facets of adulthood that I had needed help navigating? For example, the provider at Planned Parenthood who had to make no less than three calls to my cardiac care team to figure out if it was safe to prescribe an estrogen containing birth control method. I recall this being embarrassing and stressful for a 17-year-old high school junior who wanted anything but to linger for hours in the free clinic.

And later, when I graduated from college, I secured my first job with my very own health insurance and promptly received a $6,000 bill for a cardiac MRI. A heads up that I’d need to select a health insurance plan with a low deductible would have been a lot more useful than “don’t get a tattoo or you’ll die.”

The result of that cardiac MRI would lead to my third heart surgery, but first since infancy. After which, my grown-up self was discharged from the CICU with a prescription for oxycodone as an emaciated, freshly scarred shell of the woman I had been two weeks before. There was no psychiatrist, no counseling, and no connection with a support group of peers who I now know could have been so helpful in guiding me through the long recovery process.

And finally, my pregnancy. I spent most of my first trimester terrified that my son would have congenital heart disease and need emergency surgery like I did. My second and third trimesters, as my blood volume started to increase and the frequent palpitations set in, were spent in a constant state of anxiety that something terrible would happen to me and I’d never get to meet my precious boy.

To make matters worse, my perfectly lovely new cardiology team was made up of adult congenital providers who I had never met before I was 28 years old and 16 weeks pregnant. Needless to say, I spent quite a bit of time in labor and delivery triage—and yet my official transition to ACHD care still didn’t come until well after my son’s birth.  

It wasn’t until the tail end of my advanced practice training, well after I’d hit so many major adult milestones, that I learned transition to adult care for people with CHD could (and should) be a long-term, comprehensive process beginning at age 12 and largely completed between 18 and 21.

As providers, it may be our job to focus on lab tests, echos, and EKGs, but if we fail to incorporate transition education and resources into our clinical management, then figuring out the right birth control, navigating health insurance, and healing from medical trauma becomes the full time job of the patient.

These mental, emotional, and even mundane aspects of living with a chronic medical condition impact our lives every day.

From my experience, when it comes to the deeply human aspects of care, it is the nurse practitioners who are poised to provide holistic care, through both expertise and the trusting relationships they build with patients and families. I am excited to finally begin my own transition to ACHD care. We are on this journey together.