Posts Tagged ‘education’

Ten Feet Tall… and Bulletproof!

November 15, 2010

“People always told me be careful of what you do…” – Billie Jean (1982) Michael Jackson

Here’s a post by blogger Doctor D about growing up as a Sick Kid. Here he is writing about children living with Diabetes, so what are parents of  Cardiac Kids who just hit the teenage years supposed to do? Give them room? Lock them in their rooms? Who knows? I can promise you one thing, life will not be “normal”… after all, what is “normal” to a teenager going through puberty?

Oh, goodness what a time. The hormones are fully in control and you just don’t want to hear a word your parents say. Whatever they want, you try to do the opposite, and you feel just like the title of this post: Ten Feet Tall and Bulletproof. Throw a Heart Defect into the equation and things could get crazy.  Sick Kid? Naw, that ain’t me! I’m just like my friends, I can go where I wanna go and do what I wanna do, and never feel “sick” at all! Medication? Who needs medication? If I miss a dose that’s OK, because I don’t feel any different.

There’s a problem brewing right there. A lot of times, you don’t feel any different when your heart is causing trouble. A worsening heart can steal your energy and your stamina, but not all at once. It does it so slowly that it is hardly noticeable… and then suddenly, you realize that you can’t do what you used to do and your energy level is way down. Here’s a newsflash for our teenage CHDers: You were born with this problem and you will have it every day you live. So you’ve got to pay attention to your health… every day you live. You are right, it isn’t fair. But rather than whine and cry about it and let your Heart Defect win, why not learn how to fight it?

The teenage years are just the time when they don’t want to follow your advice, so you got to get ’em when they are kids, not teens. When they are teens, you are THE PARENT and your opinion carries very little weight. When you and your teen have a conflict concerning their illness, it might pay to follow Doctor D’s advice and have a neutral party step in. So you gotta catch ’em when they are young.

And this leads to an incredible balancing act: exactly how much do you tell a CHD child about their heart? First things first, you don’t want to scare them, but you do want to help them know that taking care of themselves is so very important. Cardiology appointments and checkups and doing all the “little things” right will help them live longer and better. But you don’t want to drop that knowledge on them all at once, or when they are too young, because they will almost certainly start looking at the other side of the coin. It’s an uncanny ability that kids seem to have. And you certainly don’t want to hang the “I’m different!” thoughts on the child – we want him or her to fit in, to be a well-balanced kid who grows into a great member of society. If you approach every new situation with an “I can’t” attitude you’re going to miss out on some wonderful life events. And we don’t want that to happen, either.

It’s almost like a valve: you have to decide how much information they can handle and open up the information faucet just enough. Not too much, and not too little. In a few years when they are older and understand more, you can open the faucet just a little bit more. And hopefully, by the time they reach the rebellious years, they understand enough to know that their health is not the place to issue a challenge to parental authority. They can make you scream, run in circles, and even pull your hair out, but those medications are not to be missed and you see your doctor when you need to. Because you have taught them how important it is.

I do not envy Heart Parents with children on the brink of puberty. Those folks deserve a medal!

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.

Second Hand Heroes

September 24, 2010

We’re not your classic heroes. We’re the other guys. – Mystery Men (1999)

The other day I discovered a Facebook based Heart Defect group engaged in a pointless mental exercise: They were listing celebrities that are connected to the CHD Community in some way that they feel should become a “Congenital Heart Defect representative”. Once that happened, “awareness” would be raised, money for research would come pouring in, and we’d all be saved.

Oh good grief.

I’ve seen this happen before; the group concentrates its efforts on recruiting that one big megastar and ignores the people who are actually doing the job. Because true advocacy for an issue is difficult work. You don’t just stage a few events, look good for the camera, and recite the proper sound bites. It takes time, and the job is detail oriented grunt work. The i has to be dotted and the t crossed correctly and that is your job. Long hours, very little sleep, and the “pay” is a pittance, if anything. You do this because you believe.

And by the way – if all you are doing is “raising awareness”, then you are not helping. That young mother doesn’t know Heart Defects is the most common birth defect… and she doesn’t care. What she does know is that her child is very sick and the doctors are throwing words at her she doesn’t understand.  She wants someone who can explain this to her in simple English and give her some hint of the future. And even if the future is dire, she wants to talk to someone who will tell her the truth, and gently let her know that sometimes its OK to say goodbye.

I’m honored to know people like this and count them as friends; I’ve also shared some of their stories on Funky Heart! over the past two years. You probably haven’t heard of these people anywhere else. They don’t mind; because they aren’t seeking personal glory.

The most “famous”  Heart Warrior I know might be Heather, a CHDer who saw an ad in a magazine for a TV show seeking women with heart disease. From the wording of the ad Heather realized they were looking for people with Acquired Heart Disease and ignoring CHDers. Heather got in contact with the show producers and gave them a piece of her mind – and as a result, appeared on the TV show How to Look Good Naked!

Then there is George, a retired doctor with Tetralogy of Fallot who spoke at Lobby Day 2010. I always thought George was kind of reserved, but I found out he just waits until the proper moment. When he got through speaking we were ready to tear the walls down! “One day, Congenital Heart Defect survivors are going to live to be eighty, ninety, and even one hundred years old,” he said. George is also doing his part to keep Heart Warriors going – During Lobby Day he took a young adult/older teenager under his wing. Near the end of the day George told him “Remember what we’ve done here. One day this will be your job.”

Karen T. Chavez and Kim Rooks serve as Co-Directors of the Broken Hearts of the Big Bend. Heart Defect Awareness isn’t always the answer, there are times when what is needed is Education and Support. If you have a Cardiac Kid in the Tallahassee (Florida) area, Broken Hearts members can walk you through what may come next – and be right there with you, lending a helping hand when you need it. Why? Because we’ve all been there.

Colorado’s Amanda Adams has a Cardiac Kid; when he was born she could find very little information about his defect and almost no support. Frustrated, she decided that no mother should ever be in such a situation… and began the support group Hypoplastic Right Hearts.

Amy Basken is into everything – right now, she’s on the Advocacy Staff of both the Adult Congenital Heart Association and the Children’s Heart Foundation; serving as the National Advocacy Coordinator for Mended Little Hearts; and serves as Chairperson of the National Congenital Heart Coalition. She does all this “because I am a mom of a kid with a heart defect.”

A former teacher, Amy Verstappen‘s health deteriorated after the birth of her daughter. Unfortunately she had some doctors we were not familiar with Congenital Heart Defects in Adults and they almost sent Amy for a heart transplant! Thankfully Amy found Cardiologist Dr. Carol Warnes. Dr. Warnes saw the X-ray, knew what she was looking at, and got Amy what she really needed – a valve replacement. After the surgery this same Cardiologist challenged Amy to do something about the adults with CHD who were not getting good care. Her journey has taken Amy out of the classroom to serve as President of the Adult Congenital Heart Association.

And not to be forgotten is the late Jim Wong, a PhD who lived and worked on the West Coast. Jim’s training was in Chemistry, but when it came to learning about heart defects he just wanted to know as much as possible… and he never hesitated to share what he had learned.  He often traveled to Washington to serve on a patient advisory committee for the National Institutes of Health, and was at every ACHA event I attended until he was too ill to attend.

Fifty-four years old, Jim was one of the older CHD survivors, and grew up in the days when CHDers were X-rayed, scanned, and fluoroscoped as much as possible. A lot of older survivors pass away after a bout with cancer, not because of their heart. There is currently no medical evidence to prove this, but one theory contends that absorbing all that radiation while they were young leaves older Heart Warriors more susceptible to cancer.

Jim Wong died of cancer earlier this year, perhaps as a result of all those x-rays. I like to think he died the way he lived – helping others learn about defective hearts.

A Heart Mom’s knowledge

August 16, 2010

There is a new post up at the blog of The Mended Little Hearts of Southwestern Pennsylvania titled Some silly things (and not so silly things) I’ve learned from CHD. Regretfully the author did not sign her name, but I’m willing to bet that many a woman could make a similar list:

7. I can have an entire conversation using nothing but acronyms and understand the entire thing.

10. Lobby Congress….Interesting that I never actually knew I could go to my representatives and ask them to do something for me. (I wonder if she has been a part of Lobby Day! If you were, I am sorry I missed you! – Steve)

Somewhere along the line as I was raised I always thought things like this didn’t happen to “me” Not because I was better than anyone…just because…It just wouldn’t.

It’s some great writing – click HERE to read the entire thing.

TWO UPDATES: As you can see from the comment below, Andrea Baer is the author of Some silly things (and not so silly things) I’ve learned from CHD. And Joshua has arrived, weighing in at 8 pounds 1 ounce!

Let’s close this case!

July 9, 2010

Is there anyone here who is a fan of the TNT tv series The Closer?

At first I didn’t really understand the show, and then it hit me – even though she portrays the same person, star Kyra Sedgwick plays her role as if she has a split personality. Sedgwick plays the role of Deputy Chief of Police Brenda Lee Johnson, and in “normal life”, she’s just Brenda Lee – a hapless, helpless Southern Belle who is almost in above her head and barely makes it through the day. But when the Priority Homicide team gets a suspect into the Interrogation Room, Brenda Lee goes away. Highly trained police officer Deputy Chief Johnson takes over. The Deputy Chief remembers everything and she can’t be fooled. She has a mind like a computer, she’ll calmly tear an alibi apart, and before long someone’s headed to jail. And it seems that the moment the case is solved, she turns back into stumbling, fumbling Brenda Lee.

It is a good show and is very entertaining. Sedgwick is very good, playing the same role from two entirely different perspectives – that has to be difficult to do (I can’t play myself on some days!). The Closer is an hour-long drama – 48 minutes if you record it and zip past the commercials. In that hour you’ll see a good story, a very good actress, and have a laugh or two. And in that hour four children will be born with a Congenital Heart Defect.

Whoa – never think about an hour of TV quite the same, will you?

That’s one of the problems with educating the general public about Heart Defects: The statistics are just too big. The National Heart, Lung, and Blood Institute (NHLBI) reports that 8 in every 1000 American Children will be born with a heart defect. That’s accurate, but a pretty large number -much bigger than our circle of friends. And if the number is bigger than what we can easily comprehend, our brains just seem to “turn off”. That’s why your local politician can say this programs will “only” cost two billion dollars and no one says anything. You can’t logically think about a number that big.

So for the 8 in 1000 number to make sense, you have to personally know 1000 pregnant women. That’s the only way to get a frame of reference. Most people can’t even name 1000 people that they know, much less 1000 women (who may or may not be pregnant). The March of Dimes did a little math and they report the number as 1 out of 125 children (1000 divided by 8 equals 125; so 1 in 125 is also accurate). That’s better, but it is still a big number. So using a little more math gets us down to the 4 children every hour figure.

That’s understandable – even our youngest can count to four, and practically everyone can conceive of an hour. So now we have a figure that we can easily relate to.

Another problem we have in CHD education is that we tend to speak our own language. The letters CHD strike fear in the hearts of those of us who have lived it – but what if you have never been in our shoes? The letters mean nothing. The varieties of the defect have medical names that very few can pronounce and even fewer understand. What is Tricuspid Atresia to the uninitiated? Most of us would understand Tri and that’s about it – it has something to do with three, as far as they know.

We don’t even understand our own language – try telling the momma of a child with Dexiocardia what Scimitar Syndrome is. She doesn’t know, and quite honestly she doesn’t need to know – her child has their own set of problems that she has to worry about. And to be fair, tell the Scimitar Syndrome mom about Dexiocardia. She’ll probably know it is a heart defect, but that’s all. (I intentionally didn’t provide a link to either Dexiocardia or Scimitar Syndrome. It isn’t so easy to comprehend if you can’t just click a link, is it?)

Another part of our language we can’t understand is our repair options. Most of them are named after people, and usually we don’t know why they have that name, who the people are, or what they did. You usually have to be a “giant in the medical community” to have an operation named after you, but that gives us almost nothing to help us understand the person. The Glenn procedure? What good does that do? How will it help my child? And when you learn exactly what the operation does, we’re still using medical terms and it seems that we understand less than before we began. Instead of medical jargon, we need a good drawing of the heart and someone who can speak everyday English.

“You take this blood vessel, unplug it from the heart, and sew it together with this blood vessel. You sew them together as close to the middle as possible so blood can flow to both lungs.” would make so much more sense than what we usually hear: “The Glenn Procedure is a Superior Vena Cava to Pulmonary Artery anastomosis.”

You can’t really be educated about a subject if you can’t understand what is being said. And when you receive a diagnosis of a heart defect, there is rarely any time to take Cardiology 101 and get ready to speak the language. So we have to do our best to get it down to numbers we can all understand, and get our point across in plain, simple English.

KISS – Keep it Simple, Stupid. Yeah, we have to pull out that old line – and follow it, if need be. We owe that to the Cardiac Kids who aren’t here yet, and to the legion of young parents who will be thrown headfirst into this world.

Deputy Chief Johnson would agree – anything less than our best efforts would be a crime.

Ask Questions!

April 6, 2010

Here’s a scary report, courtesy of Kevin, MD: Patients don’t ask questions of their doctors.

While there are a precious few patients who are totally involved in their health care, the vast majority just take their doctor’s advice at face value. A 2008 study found that when 181 people were prescribed a new medication, they asked a total of 199 questions (or made a comment) about the new drug. That’s an average of 1.09 questions/comments per patient!

What’s worse, the same study showed that the doctors didn’t talk, either. The average office visit was 15.9 minutes, and the patient and doctor spent an average of 49 seconds discussing the medication. The length of discussion ranged from a high of 351 seconds (5.85 minutes) to an amazing 1.9 seconds! (What can you say in 1.9 seconds?!?!)

As noted before, patients who are more involved in their own health care ask more questions. That’s you. Having a Congenital Heart Defect means that you are, for all intents and purposes, a patient pool of ONE. Others may have the same defect that you do, but no CHD ever treats its owner like everyone else.

As I’ve written before, I have a hernia. It’s usually well-behaved, but occasionally it will get pretty angry with me. A hernia repair is a fairly simple operation these days, and usually doesn’t even require an overnight stay… except for me. My Cardiologist does not want to authorize the operation, instead asking me to just fight through the bad times by prescribing couch time and TV. “I could spend a day explaining your anatomy to the surgical team,” he has said. “And they still wouldn’t understand it.” It’s not that he can’t, my doc has a couple of teaching awards to his credit. I’m complicated.

So if you don’t know what’s going on with your body, it is time to learn. And ask questions – what is this medicine supposed to do? What are some of the side effects? What do you think would happen if I decided not to take this drug? Are there any other options available? All of these are legitimate questions – and if your doctor gives you an answer in 1.9 seconds, ask another question. You can control how long he talks to you. Conversely, you can find a doctor who will spend the time needed to help you make a good decision.

It’s your body, and the medical decisions you make affect you, and rarely anyone else.

The Heart of Chicago

September 7, 2009

Bonus for Funky Heart! readers: Here’s a post from Amy over at Prairie Street Retreat, my Birthday Buddy! We share the same birthday and the same defect, Tricuspid Atresia! But I’m only 27 in my head; all the paperwork says I’m 43. HAPPY BIRTHDAY AMY!

The Giant Heart at Chicago’s Museum of Science and Industry is no more.

The 14 foot tall plaster heart (Dr. Wes has a photo of the heart on his blog) was built in 1954, cleverly constructed around a building support for strength. It was designed as a walk through exhibit, you could actually see the inner workings of the heart by imitating blood and tracing the correct path through the heart.

But now, the old plaster heart is gone. Removed. Museum employees and exhibit designers performed the worst kind of heart surgery imaginable – too big too move and possibly too fragile to disassemble and store, workers broke the heart into pieces!

But all is not lost. It is being replaced by a new heart, a modern, high tech model. This heart is actually a virtual 3D model of a heart, projected images flashed onto a steel frame backdrop. Although you can’t walk through this model, the virtual reality features animate the heart: it usually chugs along at a comfortable 60 beats a minute. But when you grab a pair of handgrips, the electronic brains behind the display detects your pulse and matches your heart rate! (Now that’s cool! I’d like to see what happens when a Heart Warrior with a funky heartbeat gives it a try!)  The Virtual Heart also allows you to see the heart’s electrical system at work, the opening and closing of the valves, and the blood vessels located on the heart itself!

The traditionalist in me is still enthralled by the only large walk-through heart exhibit that I know of: The Giant Heart, located at The Franklin Institute in Philadelphia. But I’m also putting Chicago’s new 3D heart on my personal list of Places to Visit!

Do a good deed!

January 14, 2009

First of all, I have to admit to “thinking in the box”, so to speak. Here I am trying to promote Congenital Heart Defect research, and I had never thought of this idea before yesterday.

In my moment of clarity, I picked up the phone and called the Dean of Nursing at my alma mater and volunteered to be a “guinea pig” if any of the classes were studying CHDs. They don’t even have to be studying Heart Defects; perhaps there is a class teaching proper diagnostic procedures. If that’s whet I’m asked to do, I’ll probably throw the students for a loop! As Jack Nicholson said in the movie Batman, “Wait until they get a load of me!”

I know what you’re thinking – I just want to meet nurses! Trust me, I already know many nurses, and most of them count me as a friend. To be serious, if you live near a medical school or nursing school and have any kind of chronic illness, give them a call and see if you can volunteer to participate in one of their classes.

One thing that could be done – you may have to suggest it – is a simple Question and Answer session with the students. Let them ask you what your life is like, and answer honestly. How else are they supposed to learn?

Whenever I go to see my Adult Congenital Cardiologist he always brings a medical student or a younger associate into the examining room. My doctor does the primary examination and then the other person examines me.

“Can you hear the shunt?” my doctor will usually ask, and the student finally admits that no, it can’t be heard. I try not to chuckle, because it is a trick question. If you can hear my shunt, trouble’s brewing.

I don’t mind a poking and prodding a bit. In fact, most CHD Survivors don’t have a problem with it. We aren’t standing on every street corner, and if the younger doctor can learn something – anything – from me, that’s wonderful. He may not know enough to help me, but one day in the future a case may come into his ER that no one can figure out.  When he puts his stethoscope on the patient’s chest and hears a strange beat, hopefully he’ll remember that guy with that weird heart defect that he examined back in medical school.

See what the surgeon sees

January 7, 2009

There is a new tool available that could turn surgical training on it’s head. Surgeons in training have studied drawings, photographs, x-rays, MRIs, and films of surgery, but they never knew what the inside of a living, breathing body looked like until they got into the OR. But a new head mounted camera can allow the viewer to see exactly what the person wearing the camera sees.

Moving with the wearer’s eyes, the camera records an event exactly from their perspective. There are many possible applications for such a camera, but imagine a future medical school in which students sit in a darkened film room. “What you are about to see was filmed at Duke University in 2012,” the professor says.  “Caucasian male, age 37, admitted for a Mitral valve replacement. Surgeon is known for working fast, and this operation goes perfectly. We’ll watch the whole thing in real time and tomorrow we’ll study it in detail.”

Or imagine a surgeon planning a young man’s second heart operation. He picks up the phone and asks his assistant “Did they use the HeadCam the first time they operated?” When the assistant checks the file and reports that the camera was used, the surgeon requests the tape. “Let’s see what the patient’s heart looked like then, I don’t want to stumble into anything unexpected.”

That’s not just cool…. it’s WAY cool!

You’ve got questions, we’ve got answers!

November 25, 2008

If you have a blog, you watch your stats page like a hawk. It’s natural to want to get as many “hits” as you can, you like to think that someone is interested in what you have to say. I also check to see where my visitors are coming from, and where they go when they leave Funky Heart. You can’t always tell, but if they head to a link on your page, it’s recorded. It’s good to see that people are visiting your blog friends (Maybe the visitor is not associated with the CHD family and he’s learning about us) or clicking a link in one of your posts. That’s proof that people are interested enough to look at the background material you’re giving them.

My stats page also tracks the search phrases that people used to get here. Example, if someone types “Heart Defect” into Google and then clicks on a link that brings them here, that’s in my list. It gives me an idea of what people are looking for when they drop in. One of the search phrases used yesterday was “Dumb questions people ask chd patients.” Whomever that is, I hope they come back today because *giggle* I’ve heard a few!

I don’t know what it is, but people seem just seem to be wired to ask the wrong question at the wrong time. I’ve done it myself, had the dumb question asked of me, and been nearby when someone else stuck their foot in their mouth. It’s an epidemic, and we’re all sick!

If you have a Heart Defect, the big question when you are young always seems to be “How did your lips get so blue?” Rather than explain Cyanosis to them – and when you are young, you’re not 100% sure yourself – you just give a throwaway answer. People heard all about my love of grape popsicles and grape bubblegum. And honestly, I think it’s a defensive mechanism: when you’re a kid on the playground, “different” isn’t always good. Kids don’t come with a thick skin, it’s got to be built up, and sometimes it’s just easier to avoid the issue.

Important Side Note: Heart Mom, don’t turn into helicopter mom, hovering over your Cardiac Kid 24/7. They have to learn how to deal with adversity, and the first (and harshest) lessons are usually learned when small children interact. Let your Cardiac Kid function in the real world, they’ll develop the social skills needed to deal with life.

As I hit my teen years, I would quite often give the craziest answer that I could think of! If you do it with a straight face and be completely serious, people will almost always believe you. I once told someone that I had a blue tinge to my skin because I had been dumping 30 pounds of Grape Kool-Aid into the school swimming pool as an April Fool’s Day joke when slipped and fell in! The guy who asked attended the same school I did and he knew we didn’t have a pool… but he believed me anyway!

The questions change as you get older. I’ve told someone that I have a Congenital Heart Defect and then have them ask “And how long has that been going on?” Ummm… all of my life?

Someone will see me when I’m changing shirts and they’ll exclaim, “Man, do you know you have a chest full of scars?” Have mercy! Those weren’t there last night!

Or try this one: Me: “I’ve had three operations on my heart.”

Other person: “And you survived?”

Of course, my sarcastic side wanted me to answer “No.” But I’ve learned better. A “dumb question” isn’t dumb, it’s really a sign that the person doesn’t know much about Congenital Heart Defects. So rather than “mouth off”, I’ve learned to do my best to use that “dumb question” as a chance to teach the questioner about living with a bad heart… and how all in all, we’re pretty normal.