By Jennifer Casson Tripucka
14 Apr

"So, You're Fixed Now?" ...And Other Things People Have Said to Me About CHD

Tuesday, April 14, 2020

“Wow, you have transposition of the great arteries and you survived to adulthood?” — a general practitioner (GP) doctor who then proceeded to pull his colleagues in to show them a diagram of my heart and how it works, on Google no less.

Sounds crazy at a GP’s office that I visited for a lingering cold a few years back, yet if you’re an adult with a congenital heart defect, this is a pretty common theme. Either someone has “heard” of your condition and is shocked you’re alive, has never heard of it but thinks you’re fine because you don’t look sick, or something similar. In my 33 years of having CHD, I’ve heard it all — and then some. Here are a few things people have said about CHD, which, if you have CHD, you’ll probably find eerily familiar.

“That’s a good heart condition to have.”

Oh thank you, I didn’t realize we could rank heart conditions.  

“I know how you feel.”

Appreciate the sentiment, but unless you get palpitations, cardiology appointments on the regular, stress tests and MRIs, and have had your chest opened up, it’s hard to say that.

 “So, that’s great. You’re fixed now?”

Heart conditions are never “fixed” and will always require monitoring. Some, like my Senning procedure for TGA in 1987, are a fix as a child that has quite varied outcomes and not enough research or test subjects to know what the outcome will be. Many with our various conditions, including mine, have medications, pacemakers, transplants — and the prognoses are varied from patient to patient, even with the same condition. 

 “I’ve studied about your condition but have never met someone in real life with it.”

If a doctor, specifically a cardiologist, tells you this—perhaps it’s time to check the ACHA clinic directory and, ahem, run.

 “You have a murmur [or, your heartbeat doesn’t look so good on this EKG].”

My heart works backwards and is rerouted surgically to make the blood flow the way it needs to, so that definitely is to be expected. The fact that you’re not hearing more than an extra beat is quite a blessing. (Important to note this usually only happens at a regular GP’s office!)

 “Why do you have a scar?”

While a tempting conversation starter (albeit as a female, also wondering if you’re staring at cleavage while asking said question), it’s best to let the CHDer do the talking on this one. As a child, I remember being very self-conscious of my scar and even begging my mom for some Mederma to reduce the appearance. As an older adult, I definitely view it more as the thing that truly saved my life, and am proud. But everyone is different.

“Wow, that’s a big scar!”

‘Nuff said…

“You don’t look sick.”

And many of us don’t. But internally there is a lot going on. 

“Are you going to have another surgery?”

That would be a question for my cardiologist, and there’s a 50% chance even he doesn’t know the answer. Surgery is always something that is discussed, but timeframes, unless certain, can be months, years, and beyond. 

“Why do you have a congenital heart defect?”

Heart defects, especially those occurring as isolated problems in otherwise healthy infants, do not always have identifiable genetic or environmental causes, so it’s quite hard to say. 

“Will your kids have one?”

Your guess is as good as mine. Research does show that it’s a small percentage chance that CHD will be passed on genetically.

 “Do you get palpitations?”

If you get them drinking coffee as someone without CHD, take a wild guess about someone with CHD.

“No need to be sad or depressed about your condition, we’re all going to die at some point.”

Thanks for the uplifting thoughts.

“You’re so brave.”

I appreciate the sentiment, but being “brave” is a choice. When you’re diagnosed with CHD at birth or shortly thereafter, being brave is something you were not given a choice to be. You just are.

“I’ll pray for you.”

Yes, the power of prayer and positivity/good vibes/manifestation is amazing (if you believe, no judgment either way), but so is science.

“What can I do? How can I help?”

A welcome question! Of course, the above is said in jest and if we’re really getting down to it, discussion of CHD is so appreciated, as is awareness. So if you’re reading this and have asked or have been asked one of these—don’t fear. Take this time to educate yourself on CHD, advocate for your condition and your health, and spread more awareness.

 But here’s the answer: 

Donate to research organizations like ACHA, tell your CHD friends you’re there for them, understand that anxiety about heart health and function for CHD patients is real and to be expected—but so is science and strides towards helping CHDers with a wide variety of conditions. Still, the more research, funding, doctor specializations, and interest in adults who have survived childhood with these highly complex conditions, the better.

What’s a question you’ve received or a phrase you’ve heard as a CHDer in your lifetime?

Comments

Add yours below.

Disclaimer

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.