“You have a voice, use it.”

This is the text of my presentation at the Social Security Administration Policy Conference. It is not an exact transcription. When I have to talk about a subject, I like to write out a “speech” and then learn it – not word for word, but well enough that I know the main points without looking. Then when I speak, I have the written sheet with me and if I lose my place, I can just glance down long enough to remind myself of what I want to say.

After I had written this, I was still unsure of it. Amy Verstappen, the President of the Adult Congenital Heart Association (ACHA), went over it with me and suggested a few minor revisions so that our presentations would compliment each other. As I usually do, I wrote notes and corrections in the margins of my sheet. So this “text” is a combination of my original presentation and the revisions.

“Good Morning. My name is Steve Catoe, I’m a 42-year-old resident of South Carolina, and I was born with a heart defect known as Tricuspid Atresia. I had my first heart surgery at Johns Hopkins Hospital in 1967, when I was 5 months old. That operation was the original version of the Glenn Shunt; I was the fifth person at Hopkins to survive the procedure and the first to be physically active. I’ve had a total of three heart operations; the second when I was eleven years old and the third just after I turned twenty-one. The second one went perfectly, but I really had problems during my third one. Scar tissue tore as they opened my ribcage and I nearly bled to death. The surgeon had to forgo the procedure to save my life, and because of that scar tissue, another surgery is not an option for me. I’ve also had a pacemaker implanted and had a light stroke, which I have completely recovered from.

When people ask me to describe my heart defect, I first have to describe a normal heart: Imagine a circle split into 4 sections: Left and right halves, each with a top and bottom section. The top sections are your atriums, and the lower are called the ventricles. The right half of your heart takes the de-oxygenated blood coming from your body and sends it to the lungs, where it is refreshed with oxygen. The blood returns to the left side of your heart, where it is sent back out to your body to replenish your muscles and cells. In a perfect heart, the used blood and the refreshed blood never meet.

The Tricuspid Valve is the “door” between the Right Atrium and the Right Ventricle. With Tricuspid Atresia, the Tricuspid Valve doesn’t exist, so instead of having a perfectly shaped heart, my Right Ventricle is very underdeveloped. And since there is no path to my Right Ventricle, my blood has to shoot through some holes in the wall between the two atriums, mixing my fresh blood and my used blood. Those holes aren’t supposed to be there, but I need them to survive. This causes some of my used blood to be sent back out to the body without making the trip to my lungs. The body needs oxygen rich blood to function, and I don’t have that much to give it. This is a Pulse Oximeter, (Show the pulse oximeter) it looks like a clothespin with an electronic readout and it is painless. You place it on your finger and a few seconds later it tells you how much oxygen is in your blood. Normally it should read 95 percent or higher; mine is (at the moment it was 78%)

Low Blood Oxygen is called Cyanosis. The base word of Cyanosis is Cyan, which is the Greek word for “blue”, and Cyanosis steals my energy. I don’t play sports because I tire too easily, and I certainly don’t run after the bus I just missed. On most days I get a short nap in the afternoon to recharge my batteries. The easiest way to tell I’m Cyanotic is to look at my lips and my fingertips – both have a bluish tinge, especially in cold weather. One thing I intend to do while I’m in Baltimore is go shopping – Cyanosis make my feet cold all the time, and I’m looking for thick socks! South Carolina is a little too warm for the stores to stock those really nice thick socks, so they are hard to find back home!

I love baseball, but I rarely go to a game. It’s very hard for me to climb the bleachers. It’s just like walking up a long flight of steps. If I do go, once I find my seat I’m not leaving it until the game is over. I don’t visit the concession stands or go to the restroom, because that would mean that I have to walk up and down those steps again. And with people climbing the bleachers behind me, I have to walk at their pace, not mine. That’s usually faster than I want to travel. I’d much rather go to the South Carolina State Fair every year. The crowds are thick, but they are usually spread out a bit more and heading in different directions. So I’m at no one’s pace but my own.

A Congenital Heart Defect is a 24/7, 365 days a year disease. There isn’t a day that goes by that it does not affect me in some way. I have met the finest doctors and the kindest nurses because of it. But because of my heart, I can’t do a lot of the things I want to do, or I should do. Every week, I ask my dad if he needs a hand loading the groceries in the car. We both know that I can’t do it, but I ask. He’s getting up in years, and I should be doing it… and I would if I could.

We brought a binder with seventeen letters from Adult Congenital Heart Defect patients, and five letters from Adult Congenital Heart Defect doctors. They document their struggles with the Disability system and make a few suggestions on how to improve it. Don’t worry – no one tells you to do anything illegal, immoral, or fattening! And it is this amateur’s opinion that the system is geared more toward those with acquired heart disease – the heart problems that can develop with age – rather than those of us with congenital problems.

A Congenital Heart Defect requires highly specialized medical care, so I see my cardiologist about four times a year, and sometimes more often than that. I’ve seen doctors at Johns Hopkins, The University of Alabama at Birmingham, The Medical University of South Carolina, and right now I see excellent doctors at Emory University Hospital in Atlanta. I also have to take 11 different prescription medications, and some of these medicines have nasty side effects. One drug controls heart rhythm and does it very well, but it can also cause lung damage, eye damage, and thyroid damage.

In closing, I’d like to thank you for allowing me to speak to you today. Hopefully I’ve been able to give you a little glimpse into my life.”

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2 Responses to ““You have a voice, use it.””

  1. One of THOSE days! « Adventures of a Funky Heart! Says:

    […] breath and pressed the “Publish” key… and here we are. The ACHA even asked me to speak for them in Baltimore, where there was a car waiting to take me to from the airport to the hotel and everyone treated me […]

  2. Local support – the best kind! « Adventures of a Funky Heart! Says:

    […] Commission policy conference in September of 2008. Amy spoke on behalf of the organization while I said a few words as an adult living with a heart […]

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