Posts Tagged ‘Presentation’

Teach your children well

July 24, 2010

This is the text of my July 24, 2010, presentation to Hearts Re-United 2010 in Houston, Texas:

My name is Steve Catoe and I was born in 1966 with Tricuspid Atresia. I had the Classic Glen Shunt operation done at Johns Hopkins Hospital in February of 1967, and I had a Blalock-Taussig at the University of Alabama at Birmingham in 1977. In 1988 I was back in Alabama to have the Fontan. I began to bleed badly when they cracked my breastbone and needed 20 units of blood. They were not able to do the surgery, but I still got all the incision pain and the recovery time, free of charge!

I’ve been asked to speak to you about some of the challenges of living with a Congenital Heart Defect. There are so many of each that I can only touch on a few. One thing we develop is a good sense of humor. When I was a little boy a common question I got asked was “How did you get so blue?” Rather than try to explain Cyanosis – and at that age, I wasn’t 100% sure how to explain it – a funny canned answer usually worked just as well. Friends and neighbors got to hear all about my love of grape popsicles and bubble gum. As I got older, it was my personal mission in life to give the craziest answer I could think of. I told one guy that I had been pouring grape Kool-Aid into the school swimming pool as an April Fool’s joke, and he believed me. We didn’t even have a pool… and it wasn’t April! Just this morning while I was down in the fitness center, I pulled off my sweaty t-shirt and replaced it with a dry one. A fellow on the treadmill said “HEY! Did you know that you have scars on your chest?” I just looked down in shock and said “Where did those come from?!?!”

When you have a heart defect, your daily energy level is going to feel like a roller coaster ride. Every day, I plan to feel on top of the world. But like the song says, “Some days you’re the windshield, and some days you’re the bug.” On those days you learn how to fake it until you make it. Karen McNalty, the woman who created the Adult Congenital Heart Association, had a trick. She’d stop and smell the roses, look at the sunset, or admire the scenery. You’d think Karen was a real nature lover. But what she was doing was taking a few moments to rest. I’ve pulled the Karen McNalty trick many times.

I used to work at a museum that rented out our meeting room, and quite often we had to set up a dozen or more large round tables. I didn’t see any reason to carry or drag those tables, not when I could kick them up on their edge and roll them like a wheel. And if I sang a few bars of “Rollin’ on the River” while I was doing it, everyone would think I was crazy, not sick.

In the 1930’s radio show The Shadow always asked “Who knows what evil lurks in the hearts of men?” The Cardiologist knows! Some of the most intelligent people in medicine choose to work in Cardiology and if you have a heart defect, you get to meet them! I see an Adult Congenital Cardiologist at Emory University in Atlanta, and not only do I have him in my corner, I have his partner and all their nurses at my back. And they are my Weapon of Choice. Because when I have to fight my heart defect, I do not fight fair!

A few months ago I attended a speech given by a retired doctor with Tetralogy of Fallot. He said “One day we’ll live to be 80, 90, or even 100 years old.” We’re well on our way to that goal – just about 95% of all children having heart surgery grow up, and for the first time, Adults with CHD outnumber the Cardiac Kids.

I’m 43 years old, and I have seen some amazing changes in Cardiology. My first EKG took more than an hour and was printed out on a long roll of cash register tape. My second surgery took place before anyone had thought of a cough bear, so twice a day two nurses would come into your room, sit you up, and pound on your back until you coughed lung gunk into a cup. And this was not long after surgery! I’ve never had an MRI before an operation because MRIs didn’t exist. And if I have seen all this, can you imagine what is coming next?

A Left Ventricle Assistance Device is a small pump that can be connected to a failing heart and keep it going longer, hopefully giving enough time to find a good heart for transplant. And some models are being tested as “destination therapy.” What does that mean? Destination Therapy means that the pump can be the last step – no need for a transplant. These devices are powered by a battery pack outside of the body, and the batteries are getting smaller. But Robert Jarvick is working on an Assistance Device with no battery pack at all. It gets its power through the use of tiny magnets.

At Wake Forest University and in Pittsburgh, two different teams of scientists are growing organs in the lab. The Wake Forest team has actually grown bladders in the lab and implanted them into humans as transplant organs. And since the patient is the source of the cells they use, there is no chance of rejection. As far as the immune system is concerned, that bladder is original equipment. They’re also working on heart valves and blood vessels.

Surgical techniques are improving, too. My 1967 operation was the Glenn Shunt. A lot of your children also have the Glenn, but mine is the original version that only sends blood to the right lung. Today’s Glenn sends blood to both lungs and reduces the strain on the right lung. The Fontan didn’t provide the results that doctors were looking for, so the operation was redesigned – twice. Does anyone remember the Blalock-Hanlon Shunt? That was the operation used when you had to open the heart and create an ASD, and that was done as part of my first operation . It’s still around, in the back of musty old textbooks. But the majority of ASDs are created by Catheter now and the procedure is much easier on the patient.

With the proper level of care Cardiac Kids can have a long life. But what good will that life be if they live in fear, if they run and hide, or if they say “I can’t, I have a bad heart.”?

Teach your Heart Child to embrace life, enjoy it, and make the most of it. Teach them the self confidence to find a way to complete a task even if it isn’t the accepted way. Be careful, but don’t be scared.

And teach them that every heart deserves to live a lifetime.

At Your Service

May 14, 2010

I’ve been writing Adventures of a Funky Heart! since July of 2008, and during that time I have had the honor of meeting numerous Cardiac Kids, Heart Warriors and Congenital Heart Defect (CHD) Families.

It has been my honor to share some of their stories with you. Hopefully I’ve been able to show you that you are not fighting your heart defect by yourself. No matter how good or poor your heart health may be or how dark the day looks, someone is in (or has been in) the same situation.  Draw strength from that knowledge; when I was growing up we hardly knew there were other people just like us out there. And without a convenient communications system like the Internet to bring us all together we all thought we were the only ones with this  problem.

And that makes beating your CHD so much harder.You need to know there are others out there going through the same thing that you are. And if you are a young parent, meeting an adult with a similar problem as your child’s may be just the boost you need to keep going.

If your CHD Support/Advocacy group is planning a weekend event – a symposium, a conference, an extended meeting – please keep me in mind. If your group wishes, I will be happy to come and speak at your event at no cost to the organizing group.

I have my laptop computer with me when I travel, and if there is an internet connection available I will “liveblog” the event, reporting on the speakers and their presentations. This will introduce your group to a worldwide audience. (If there is no internet connection I will take notes and report on the meeting that night.)

All I ask that you check the schedule first. I’m not wealthy, so I can’t afford to travel every weekend. My health is good and I am always looking forward to the next adventure, but sometimes the budget says “No!”

Also, remember that I am not a doctor and that I speak from my own experience. What works for me may not work for you, and I can’t (and won’t) diagnose you or give you medical advice.

If you wish to contact me – for a speaking engagement or just to drop me an email –  you can find my address in the About the Author link.

“You have a voice, use it.”

September 26, 2008

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.”