Posts Tagged ‘Defect’

Defect or Disease?

October 11, 2010

Do you have a Congenital Heart Defect, or Congenital Heart Disease?

Most people I know use the two phrases interchangeably – even my hero, Dr. Helen Taussig. She preferred to use the phrase Congenital malformations but even she fell into the Heart Disease/Heart Defect trap occasionally.

On paper it is an easy choice: a defect is a design flaw, while a disease is an illness. My heart has several design flaws (a missing valve, holes in the wall) so obviously, I have a heart defect. But my heart defect causes several heart diseases – if my heart wasn’t defective, I wouldn’t have to worry about Congestive Heart Failure, Cyanosis, or Atrial Flutter. So really, both terms fit the situation.

I may say “Congenital Heart Disease” but others only hear “Heart Disease.” That’s not so bad, since it is usually applied to the health problems that affect the heart as you age. Even though there is a misunderstanding, at least the discussion involves the heart. I can use that as a starting point. But the phrase “Heart Disease” is becoming a code for “unhealthy living.”

Heart Disease? Son, you need to step away from the cheeseburger. After all, if you didn’t open wide and literally shovel the food down your throat, you wouldn’t be having these problems. And don’t give me that look, no one held a gun to your head and forced you to have that second helping!

I have been sitting in the Cardiologist’s waiting room and been asked “So what are you in for?” (In the same tone of voice used to ask Prisoner #6298965 what he is in for!) When I replied that I had a heart defect, I was told in no uncertain terms that I should have been more careful! Her husband had the exact same problem and she had thrown the salt shaker away, cut out the cholesterol, and didn’t fry any foods at all! Knowing better than to argue, I nodded and just kept saying “Yes, Ma’m… Yes Ma’m!” I also wondered if her poor husband actually enjoyed eating cardboard boxes at every meal.

It seems to be a grim comment on our society that it is assumed if you have an illness, you’re automatically at fault. When I volunteered at the museum, my boss was participating in a county fair parade when he suffered a heart attack and fell off of his horse. During his recovery period we occasionally heard comments about how he was going to have to lose weight, watch what he ate, and other advice. These people didn’t know that he usually tipped the scales at 165!

This “It’s your own fault!” attitude has also led to almost making “obesity” a crime. The problem is, today’s definition of an “obese” person would have been quite acceptable in the past. Look at any of the paintings by the great masters: since most of the subjects were at least partially nude, it is easy to tell that they carry a few extra pounds. But what was recognized as healthy and attractive back then is seen as repulsive today.

And it is not because we have gotten smarter or more health conscious or “nutritionally aware.” The Body Mass Index (BMI) charts were accurate in the 1950’s… but humanity has grown taller and heavier, distorting the results. According to a BMI chart, all of the members of the 1996 USA Women’s Curling Team is obese. Actor Tom Cruise – all 5 foot 7 inches, 160 pounds of him – is considered just barely “overweight”. (A BMI of 25 is considered overweight, Cruise’s BMI is 25.1)

Young people today, especially young ladies, are held to an impossibly high standard. Anything less than perfection is unacceptable, and open to ridicule.

Everybody’s Working for the Weekend!

August 30, 2008

Let me tell you a secret. Lean closer and I’ll whisper it to you.

Ok, here it is: A lot of adults with a Congenital Heart Defect work for a living.

Surprised you, didn’t I? Well, you shouldn’t be. I know several ACHA members who are teachers. Jim Wong, who I recently mentioned, has his doctorate and works for Hitachi on the West Coast. And we have at least two of our members who are medical doctors. Talk about giving back!

As for me, I used to work at a small museum. The museum was small enough that sooner or later, everyone did everything. I’ve moved items from the storage area to the exhibit floor (and back); ran the Admissions Desk; been a Cashier in the Gift Shop; led tours; put together Educational Programs; and even helped build exhibits.

My heart defect was never an issue – it didn’t need to be. It was assumed that I was a fairly intelligent adult, and if I needed assistance, I’d ask for it. No one rushed to my aid at every turn, and I appreciated that. Rather than being “coddled”, I was accepted for who I was.

I finally left the museum after working there for a little more than ten years. Tourism took a big downturn after September 11, 2001, and since I don’t have a wife or kids to support, I volunteered to be the one to bite the bullet. I was already selling surplus for the musuem on eBay, so I just started selling for myself. I’m not making a fortune (yet), but I have a roof, all the bills are being paid, and I’m comfortable.

ACHDer’s – and almost all people living with a disability – want a chance to prove themselves. And often our ability to hold a job is our personal proof that we can make it on our own; that we aren’t just exisiting. I have a friend with a different type of defect than I have; he’s looking for work and not having any luck. His weak heart often confines him to a wheelchair, but he’s a great fellow and a real trooper; much more than I could ever be. But you can tell that he feels incomplete without work. When he finally does land a job – and he will when the economy bounces back – he’ll be the best employee a company ever hired.

The Tallest Kid in the Room

July 28, 2008

They always have Highlights for Children. It’s a common staple of any Pediatrician’s office, but it never seemed that they made the magazine available for home delivery. I always wanted a subscription to Highlights, because I enjoyed all the puzzle pages. But that was then. Times have changed, and now I’d rather have a subscription to a good baseball magazine. Most children aren’t that interested in baseball, so I need to bring my own.

I walk into the doctor’s office and I can feel the eyes boring into my back. I can’t see them, but I know that everyone is looking at me. When someone my age comes into a pediatrician’s office without a child, everyone stares. What’s he doing here? If they are wondering now, just wait until the nurse checks me in and tells me to have a seat.

Usually all of the adult chairs are occupied. It’s impolite to stand in the waiting room – there’s no rule against it, but I’ve never seen it done unless every seat is taken – so I sit in one of the children’s chairs. That’s an adventure unto itself. You sit down as you normally do, but you just keep going down until your bottom hits the chair with a bone jarring THUMP and your knees are level with your eyes. Now I look stupid, so I stretch out my legs. Not only am I blocking the walkway, but now I really look stupid, so I pull my legs back in. Hopefully this won’t be as bad as the time that I had pneumonia: my doctor admitted me to the hospital, and after a 4 hour wait in the ER I learned the only available bed was on the Children’s wing. It was a loooooooooong way from my rear end to the child sized toilet, and I was too far down to stand up! I literally had to roll off the seat and then get to my feet. But there was no room in the inn, you take what you can get, and beggars can’t be choosers.

Until I was 30 years old I saw my local pediatrician for non-emergencies. It works the same way for kids with heart problems. “Adult” Cardiologists can’t deal with us – they are trained to deal with heart attacks, clogged arteries, and all the problems that your heart develops as you age. They usually don’t have experience dealing with Congenital Heart Defects (CHD). A friend of mine – also a Cardiologist – once said that if you chose to specialize in Adult Cardiology, you received about two hours of training in CHDs. Basically just enough to know that they exist. So no matter our age, Cardiac Kids are still patients of a children’s doctor.
But now there’s a new specialty, known as an Adult Congenital Heart Defect doctor. Adult Congenital Defect care is not taught at any medical school (yet); many of the ACHD docs are really Pediatric Cardiologists. Since their patients stay with them practically all their life, these “children’s doctors” found themselves dealing with questions about work, pregnancy, dating, insurance… questions that Adult Cardiologists usually have to answer. And so the field of ACHD Cardiology was born.

You won’t find one on every corner, but ACHD care can be found. Usually, you’ll need to go to a major medical center. I live in rural South Carolina; the ACHD centers in the South include Duke University, Emory University, and the University of Alabama at Birmingham (UAB). Other major centers include The Mayo Clinic, Stanford, the Philadelphia Adult Congenital Heart Center and Children’s Hospital of Boston. There are other clinics, of course, but those are the ones that spring immediately to mind. And now, the waiting rooms have people who are more in my own age range.

I miss the visits to the Pediatric Cardiologist, though. While I’m sitting there trying to get comfortable, absorbing all the stares, the kids don’t pay a bit of attention to me. Kids are kids, they are usually congregated in the play area, getting along famously and having a great time. For once, they aren’t being left behind on the playground – everyone is moving at about the same pace.

The parents are the ones sitting there with the worried look on their face, with good reason. I always hope that one of the parents will speak to me, perhaps ask if my child is sick. If they do, I’ll tell them that no, I’m the one with the heart defect. My parents were in the same boat you were. I’m 41 now, and still going strong. And hopefully someone will come to believe that with good medical care and a little good fortune, their child will do well.