By Stephanie Hodgson
10 Jan

Transitioning: An Unbelievably Similar Story

Tuesday, January 10, 2012

“Welcome to adulthood,” Dr. Heydarian’s nurse, who is also his wife, said, as I undressed for my first echocardiogram at age 17 in January 1983. Sometimes those gowns are useless when having this procedure, and I’m very glad a woman was with me during the echo. This is one of many CHD experiences I had going into adult health care, and we’re fortunate enough to have a team, such as ACHA, that understands this transition from adolescence to adulthood.

Adolescents face many challenges, such as deciding what to do for a career and deciding their best path. Now throw into that equation knowing that their years of being followed by pediatric cardiologists will now follow them into their adulthood as they assume responsibility of their healthcare.

Due to major advances in medical and surgical care over the past 40 years, more than 90% of those born with a congenital heart defect are living into adulthood. There are now more adults living with CHD than children. There are more than 1 million adults living with congenital heart disease in the U.S. and this number continues to grow about 5% each year.

Let me introduce you to Nicole. She is 17 years old, and was diagnosed at age 15 in January 2010 with her ventricular septal defect with Eisenmenger syndrome and has developed pulmonary hypertension, which has caused irreversible damage to her lungs.

Nicole is among many young adults now transitioning into the adult care world of those living with CHD. Our stories are almost unbelievably similar, but on the positive side, it’s been 29 years since I was first diagnosed in January 1983. So, fortunately, Nicole has more advanced care options today.

What I didn’t know back then was that I’d still be here in 2012, and that I’d meet anyone with my exact illness. Even though Nicole and I have a similar congenital heart physiology, each person living with CHD will have their own unique journey and situations with their heart and in life that will come up.

As was also the case for me, Nicole’s CHD was found much later in life, rather than at birth, and also like me, she was surprised to know the seriousness of her illness—especially to know that the VSD could not be repaired and that CHD is a lifelong chronic illness. “I blame the doctors,” Nicole says, and then adds, “I also blame God for making me this way.” She had felt something was wrong, because the condition she has produces shortness of breath and blue lips and nails.

Besides needing appropriate transitioning into the adult congenital heart world, Nicole is like most teenagers with hopes and aspirations for the future. Nicole has a very wonderful artistic talent and hopes to study computer animation with a lifelong dream of going to art school at Full Sail University. And although Nicole hasn’t had much training in the technical aspect of computer animation, she has the talent and desire to study art. A piece of Nicole’s artwork won second place in an art contest she entered on a caregiver’s blog site in which her mother participates. This impressed me that Nicole still wants to do this despite her illness.

Nicole knows that she has limitations because of the expense of college, but medically and physically she is optimistic about completing her Bachelor’s degree mostly online, saying, “If the classes are online then I don’t think there will be any barriers.”

One of the things that Nicole has going for her is her support system. Both her mother and father are behind Nicole 100% for whatever she chooses to do, her peers are pretty much supportive, and her doctors ask to see her artwork at appointments.

Note: Stephie also interviewed Jane, Nicole’s mother, for a Q&A that will be part of a future member story feature.


Add yours below.


The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.