I was here as a Child…

Back when Adult CHD’ers were Cardiac Kids, doctors would often tell our parents that our operations had fixed our heart. Sure, we might have some limitations due to Cyanosis, but kids can learn to live with that. The important thing was that we were A-OK!

Time passed, and one fact become glaringly obvious: We weren’t A-OK.

No one had been lied to. Congenital Cardiac Surgery was a young field, and there were practically no older survivors to draw data from. Our doctors were sincere when they believed that our heart problems were in the past. Perhaps part of it was a feeling of relief that the immediate crisis had been dealt with. The patient was stable and should survive. Ergo, we were “fixed”.

But as someone with a Congenital Heart Defect ages, they can begin to to have some of the problems that heart-healthy people do. Granted, we probably won’t have the same problems, but age gets to all of us. And a good percentage of us may hear those dreaded words, “I think we’re going to have to operate…”

Often our first surgery was done as soon as it became apparent that we were sick. Lots of Adult CHD’ers have “We need to operate NOW!” stories from their early years. But if we are getting proper medical care, a good cardiologist can detect the subtle changes in our adult heart that are the first signs of trouble, and with luck we have a “heads up” and can prepare for surgery. When an Adult CHDer is facing a possible heart surgery, he or she needs to ask several specific questions.

“What kind of tests do we need to do before the operation?” A surgeon isn’t going to open you up just to look around and see if he can find the problem. You’ll certainly have to have some X-rays taken, and quite possibly a CAT scan or an MRI. Your Cardiologist may even order a Catherization to get a good look at the heart structure.

“What exactly do you plan to do to me?” The answer is going to be based on what the results of the various tests are, plus the Cardiologist’s report on what is going on inside of your heart. A good surgeon has the operation planned out in advance, and he has a back-up plan in case there is a problem.

“How much experience do you have doing this type of operation?” A poster on the Adult Congenital Heart Association message board once stated that he needed to have a valve replaced. His aunt had recommended the surgeon who had performed her husband’s bypass surgery, and he was going to meet with him.

He’s getting off on the wrong foot already. What he needs is a Congenital surgeon, someone who has experience cutting into the heart. A Bypass surgeon doesn’t normally do that, so he is not the right person for this operation. And even though she means well, the aunt needs to be told just to leave well enough alone. When it is her health, she can make the decisions. Until then, no dice.

And don’t be alarmed if you find that the best Congenital surgeon for you is a Pediatric surgeon with adult experience. Most of the Congenital Heart Surgeries being done today are performed when the patients are children, so the children’s surgeon could be just the person for you… even if you are in your 30’s.

“Which hospital are you planning to use? How much experience do they have with this type of operation?” You’ll probably have to contact the hospital or the state health department to learn how much experience the hospital has with your planned surgery. Having the best surgeon in the world won’t do you any good if the Recovery Room staff can’t start an IV correctly. Make sure that they know how to care for someone who has had your type of operation. And once again, Congenital surgery and Bypass surgery are not the same thing, and competence in one field doesn’t always translate into competence in the other.

“What can I do to assist in my recovery?” Moaning in your hospital bed isn’t helping, and it is probably driving your roommate batty. Do something that will help you heal faster.

“When can I go back to work?” That’s your ultimate goal: to get this behind you and get your life back on track. You’ll be released from the hospital first, with lots of limitations. You’ll also have some informal exercises or perhaps a formal Cardiac Rehab program. Follow the doctor’s instructions! You’ll be able to do more, do it quicker, and won’t hurt yourself. And soon the answer to the “go back to work” question will be “Next week should be fine, if you take it easy.”

You won’t mind the boredom of your job; you’ve had quite enough excitement for a while!

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One Response to “I was here as a Child…”

  1. Treehousedweller Says:

    Yeah – I used to love getting my appointment letter and my mum being reminded to bring my teddy!!! Luckily I’m a petitish !! woman – but yes I got the strange looks too. In the last two years they have started up an Adult CHD clinic – not quite a fun! But I it meets the needs which is great.

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