Posts Tagged ‘Teach’

Back to School

November 12, 2010

“Trouble is, there’s not enough of us to go around – we’re spread thin, so sometimes, important things get ignored or don’t get said.” – Judge Tolliver (John Goodman), The Jack Bull (1999)

Yesterday I had the chance to go back to school – I went back to my Alma Mater to our School of Nursing!

I asked for directions just to be sure – when I graduated the School of Nursing didn’t exist. And I didn’t want to assume I could find it only to discover that it was in a back corner of the campus. But it wasn’t a problem; as soon as I turned off of the main highway and scanned the campus, there it was. Everything was exactly as described, which usually doesn’t happen – more often than not, I get twisted up and turned around but everything went perfectly.

After meeting the instructor for the first time, we went upstairs and into a classroom where I met the students (about 30 of them) and talked about myself and my heart defect. If you’re a reader of this blog, you know I usually post the printed text of my presentation. Not the case this time – as I told the students, when I make a presentation to Heart Families, I’ve got a plan and am pretty sure what I will say. With them, I wasn’t sure what they wanted or needed to know, so I’d just talk about myself. If they had a question, feel free to break in.

Someone had a really good question about did I need oxygen. Technically no, I don’t need oxygen, but I sleep with a flow of four liters per hour. It was originally prescribed to keep my Hemoglobin down, and I can skip it for several days without problem. When I take a weekend trip, I don’t take it with me. But I’m like a rechargeable battery and the O2 is like my charger – after about 4 days of sleeping without oxygen, I feel run down.

After I talked about myself and the Question and Answer session, we moved over a larger room set up as a hospital ward. When I walked in there was a bed to my right with a medical mannequin in the bed, tucked under the covers neatly. I saw him/it out of the corner of my eye and for a moment there I thought it was a real person!

We didn’t bother Earl (or whatever the mannequin’s name was), he looked comfortable. I took another bed, and in pairs and threes the students came in and examined me. My heart was listened to more times than I can could count, and everyone took a close look at my blue fingernails. My right hand is a little more blue than usual because of the swelling associated with my wrist, but my left hand is better suited to observe Capillary Refill (press down on the fingernail until it turns white, then release. Observe how long it takes for the blood to flow back.)

More than one student seemed to be very interested in the fact that you can’t read my pulse in my left arm – a side effect of the Blalock-Taussig Shunt, the surgery I had in 1977. In the Blalock-Taussig, the Left Subclavian Artery is cut and sewn into the Pulmonary Artery. The Left Subclavian normally passes near the shoulderblade (the Clavicle), and down the left arm. Because it has been disconnected, you can’t get a pulse in my left arm, can’t take an accurate blood pressure reading, and blood draws and vaccine injections should be done in the right arm.

(NOTE: If you have the Modified Blalock-Taussig Shunt, a small artificial connection is used to connect the Subclavian Artery to the Pulmonary Artery and the Subclavian is left intact. You usually can feel the pulse bilaterally on a patient with the Modified Blalock-Taussig!)

When the students weren’t listening to my heart, the instructor was – with an electronic recording stethoscope. I’ve had this done before, back in 1977 at the University of Alabama at Birmingham (recounted in this post.) But back then it was a Stethoscope head connected to wires that ran to a machine the size of a toolbox, that recorded my heart on a cassette tape. This one looked like a regular Stethoscope, perhaps a little thicker around the head. It would record (sensitive enough that it recorded a cough!) and then transmit the recording to a laptop computer via Bluetooth! My Geek side started getting the best of me, and I was developing a very, very bad case of STEVE WANT! But I knew that if I asked how much it cost, the instructor would inject me with 1000 cc’s of reality. Reality is a difficult drug to take – it’s good for you, but can make you feel pretty lousy.

I enjoyed my visit to the Nursing School and I’d like to thank everyone for making me feel so welcome. Even if none of the students chose to work in Congenital Cardiology, they’ll bump into other patients like me – it’s estimated that in the United States, there are slightly more adults living with a Congenital Heart Defect than there are children. Adults with Heart Defects are living longer and better, and we’ll have “normal” medical problems in addition to our bad hearts. And today’s Cardiac Kids are growing into tomorrow’s Heart Warriors.

So its important for those of us with a heart defect to “meet the public” – and not just to raise awareness, but to educate. To guide new Heart Families through this scary world we never expected to enter, but also to give the professionals who will be taking care of us a chance to learn from us. it doesn’t matter if someone is the best Heart Surgeon, the best Cardiologist, or the very best Cardiac Care Nurse… sometime in the past, these people had no idea that Heart Defects even existed.

Someone had to teach them.

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A Chance to Teach

October 10, 2008

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.