A Chance to Teach

One of the fun things that happens is when I have a chance to teach others about heart defects. Not just the Social Security Administration policy conference in Baltimore two weeks ago that I attended  on behalf of the Adult Congenital Heart Association (ACHA), but those times when the situation just presents itself. My friends who teach might very well call it a “teachable moment”, I just say it is a chance to show people how normal I – and many others with heart defects – are.

One such opportunity arose while I was returning from Baltimore. It occurred while I was clearing security through the Transportation Security Administration (TSA) checkpoint. When I reached the front of the line, I told the first screener that I had a pacemaker and requested a hand search. I was asked to step to the side and wait for another TSA agent to assist me.

In a moment the second agent ran my carry-on through the x-ray machine, then asked me to place my feet shoulder with apart and raise my arms to shoulder level. “Before we begin, is there any unusual items on or about your person that you feel you should tell me about?” (That’s a paraphrase; I don’t recall his exact words.)

“Yes,” I said. “My pacemaker is located on the left side of my abdomen, rather than in my shoulder.”

“I’ve never heard of that before,” he commented.

“It’s just the way my heart works,” I told him, warming to the occasion. “Usually a pacemaker is placed in the shoulder and the leads go down through a blood vessel called the Superior Vena Cava into the heart. (Click HERE for a diagram of the “usual” pacemaker placement) But I’ve had heart surgery and my blood vessels have been moved around. If you go down my Superior Vena Cava, you’ll wind up in my right lung.”

“Wow. You’re a little young to be having heart surgery, aren’t you?”

“I’ve had three; I was born with a heart problem. Had my first surgery right here in Baltimore.”

By that time my pat-down was finished and I was cleared to go. “Are you OK to fly?” the guard asked.

“Oh, yeah,” I said, gathering my stuff. “Most of us with heart defects do pretty well. We have to go slower or take it easy at times, but my life is pretty normal… almost boring, in fact.”

“Boring is good, we like boring around here,” he laughed. “You have a great flight.”

When I get a chance to talk about my heart, it’s not so much that I hope the other person remembers me. I hope that they remember that I’m basically “just a guy” – there’s nothing special about me. Sometimes I have to go slower or figure out a different way of doing things. Every few months I’ve got to go see my doctor. And I have a bucketful of pills that I have to take. But other than that, I blend in well.  You can’t find me in a crowd by looking for “the guy with the bum heart.” Even though I’m Cyanotic, you probably can’t tell it. You have to know what you are looking for and even then you could easily miss it. I could very easily be the young man sitting at the next table typing on his laptop.

I’m completely normal.

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9 Responses to “A Chance to Teach”

  1. Joyce Willis Says:

    Hi Steve,

    I just stumbled across your blog tonight and have really enjoyed reading it. Hearing about someone with Tricuspid Atresia who is in their 40’s has been encouraging. And seeing that picture of 8 adult Tricuspid Atresia survivors was heart warming (no pun intended).

    My son was born with Tricuspid Atresia 24 years ago. The doctors told us at the time that he could live several decades, which sounded fine when he was a baby. My husband and I would laugh it off, saying he just wouldn’t have to worry about retirement. Now, the older he gets, the more I ask myself, “What is your definition of several?” I’m certainly not ready to give him up yet.

    Keep up the good fight. We’ve had a few go-arounds with Social Security ourselves (always on the losing end), and trying to keep him covered by insurance once he turned 24 was a real challenge. I look forward to reading more from you in the future.


  2. KJ Ware Says:

    As a TAer in her 30’s, I want to scream to people, I am normal!!! I want to tell parent’s with heart kids, most of us grow up and lead a fairly normal life. Maybe we move a little slower, but we accomplish what we want and we don’t lament the fact that we have this heart thing!!! We know no other life. It is just like a normal healthy person who can’t be a great artist because they can’t draw. Do they sit and cry about not becoming a great artist… probably not. They just find something they can do. I am normal!!! And maybe I will die young… so I am going to live to the fullest today!!! Because none of us know when we are going to go… heart healthy or heart not so healthy. =) KJ

  3. Steve Says:

    Joyce, ask your son to look up the Adult Congenital Heart Association website (www.achaheart.org) if he’s not already a member! It’s FREE! I thought I knew a lot about my heart before I joined, but I have learned so much just by reading our message boards! And we don’t talk about our hearts 24/7, we have fun, too! Everyone I have met is very positive, certainly not “pie-in-the-sky” delusional types, but we have a good, positive outlook on life. If you are having problems, you can let it out on the message board, and even if no one can help you, we can certainly sympathize. We get together in local meetings and even have a national convention every two years. At the last one, there were 300+ CHD survivors AND at least 75 Adult Congenital Cardiologists in attendance!
    Send him over, I think he’ll fit right in!

  4. Steve Says:

    KJ, I have been there and done that! I’ve made myself a promise — my heart is not going to kill me. If I go, it will be because I am so clumsy that I stepped in front of a bus. Thank goodness that I live outside of a town of 452 people… there aren’t many buses around here! 🙂

    No one is promised a certain time here, no matter if they are a world champion athlete or sicker than a dog. So live your life, and don’t wait around for something to happen that might (or might not) occur!

    Also, my 8 year old niece says that if someone is so nervous that they are just waiting for the other shoe to drop… then sell the other shoe! You can sell *anything* on eBay! Hey, she’s pretty smart for an 8 year old!

  5. Jessica Caperton Says:

    Hi! I’m Julianne’s (HLHS) mom (from your blogroll)! I found your blog through a link on another heart family’s blog. I’ve been reading through your posts the last couple of days and its been great to “hear” the perspective of an adult CHD survivor. Thanks for posting your insight.

    We try to teach people along the way as well. Julianne is pretty big for a HLHS baby so we often hear, “OH! What a healthy baby!” If the person seems really interested I’ll explain about her heart and what she’s been through and what a miracle she is. You’d never know by looking at her that she has a very serious heart condition. I’m even sending a card to the original doctor who made her diagnosis (in utero) to let her know that there IS hope! She’d given us a very bleak prognosis…saying that she’d either die or be severely handicapped. One of the other things I’d love to make more people aware of is to make sure that the heart is “normal” during that exciting 20-week ultrasound during pregnancy. Its just a difficult subject to talk to a pregnant woman about without scaring her, you know? Its amazing how many HLHS cases are still missed during that ultrasound. I’d love to think of a sensitive way to let expectant mothers know that the ultrasound is not all about finding out the sex of their baby.

    Anyway, thanks again for everything you’ve posted here. Glad to hear your appointments went well! I’ll be checking in!

  6. Vanessa Says:

    Thank you so much for the image about the pacemaker. I’ve always wondered how they were implanted. That’s amazing. How old were you when you had your pacemaker put in? They almost put one in my daughter after her heart surgery but ended up not needing to.

    As always I enjoy reading your posts. It’s so nice to see things from an adult CHD’er prospective.

  7. Steve Says:

    Thanks, Jessica!

    And it is good to hear that Julianne is doing well! You’ll be glad to know that when I was at the ACHA convention this past may I met a couple of ADULT HLHS survivors! One of them even had her heart-healthy fiance in tow!

    You are correct, there needs to be a better way to communicate the fact that the ultrasound is to check the baby’s development, not just to determine the baby’s sex. But as you said, communicating that fact without unnecessarily alarming the expectant mother can be difficult. Hopefully someone can think of the correct words soon… it’s much too important!

  8. Steve Says:

    Hi, Vanessa!

    Thanks for your kind comments! I was 36 when they put my pacemaker in! (I occasionally say “installed it” but that sounds too much like a car! I’m a man, not a Chevy!) My pacemaker was placed to combat my Congestive Heart Failure.

  9. carolyn compton Says:

    Steve, is there a sudden rush of people discovering your blog?
    I love it! I eagerly await the next installment. You are so bloody good at it. so understated…

    The way they tell you in the ultrasound is quite clever. they say something like: “he has his hand over his heart so i can’t quite see it.” then they check it again and again…..and again….and again….

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