Working with a Congenital Heart Defect

“Just for fun,” he says, “Get a job.”

The Way it is, (1986) Bruce Hornsby and the Range

It is possible to work with a Congenital Heart Defect (CHD). In fact, the majority of adult CHDers that I know have jobs. But like everything else in life, you have to be willing to compromise.

Heart Warriors learn the art of compromise early. Sometimes no matter how bad we want something, our busted Circulatory System just won’t let us have it. So we learn to work around our heart, or find a different way. And sometimes we just have to take Bruce Hornsby’s philosophy: That’s just the way it is.

At a recent meeting of the American College of Physicians, it was stated that 90% of children with a chronic or disabling health condition are expected to live more than 20 years. The meeting concentrated on the health care needs of these young people, but many of them also enter the workforce every year.

You may have to choose your potential career earlier than your peers.These days they are pressuring you early – almost all the way from “What do you want to be when you grow up?” By the end of high school you need to have decided if you want to go to college, and where…. both decisions can impact your life greatly. One of the reasons I chose the college I did was it was so compact – I knew that I would not have a vehicle on campus and had to be able to get around. Compromise.

CHDers find out early that our bodies are much better suited for a desk job. So we need to go to a good school and build up the brain. I know several Heart Warriors who wear the disguise of a teacher, and that was my chosen career path before my third operation and the incision infection afterward threw my plans for a loop. I eventually landed on my feet at a small museum, where I worked for ten years. That job was a teaching job, we just didn’t have any desks.

Hit the books, get the grades, and then find a good job. And what makes a good job? Your criteria may be different than others. You would probably be willing to trade the big bucks for a flexible work schedule and a decent insurance plan. You don’t know when a problem could keep you out of work, and even if you are doing great, Heart Defects are expensive. The drugs are expensive, and so is that yearly Catheterization that the Cardiologist wants you to have.

Once you have that job, work at being the best you can be. Don’t overdo it, that’s a one way ticket to the Emergency Department – but be the employee that they can’t replace. Good will is like money, and you need to keep saving it up. You never know if you might need it later.

CHDers can work, and a lot of us do. And while we may compromise, we never settle for being less than anyone else. Just a little different!

That’s just the way it is; some things will never change.

That’s just the way it is; but don’t you believe them!

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2 Responses to “Working with a Congenital Heart Defect”

  1. Maya Says:

    Great article! I have Marfan syndrome, which causes lots of cardiac issues. I now work with teenagers with the syndrome and few things bother me as much as when they tell me they can’t go to college, or can’t be x, y, or z. It takes a lot more planning, as you pointed out, but few things are impossible (except, you know, the military isn’t going to be taking us any time soon).

    One of my criteria for choosing my universities (I have both a BA and an MPH) was proximity to an excellent heart hospital. I also wanted to go somewhere that had great disability services. Although my undergraduate institution was small enough that I could usually walk everywhere, my graduate school was not and I had a small van that picked me up and drove me from class to class and home again.

    I did have to change my major when I realized it would not provide me with a good insurance plan. I’m very happy with studying public health however, and my education prepared me to be a better Marfan advocate.

    We can do almost anything a “healthy” person can do, sometimes it just takes us a couple extra steps to get there. In the end though, I think we’re better for it.

  2. Maggie Says:

    This is a fantastic article! I was born with complex transposition of the great arteries. I just finished a college program and will be going to University in September. Woo hoo!!

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