Posts Tagged ‘HRHS’

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.

New CHD Video

January 22, 2010

Here’s a video made by my friend Shannon, who is mom to two wonderful kids, both facing health challenges. The song is Only You Can Love Me This Way, by Keith Urban.

On the Street Where You Live

November 6, 2008

This past week I’ve spoken a lot about Katie, sometimes I wonder if I’ve said a little too much. I’ve been asked, both online and in real life, if maybe I’m paying just a little too much attention? It’s not really a surprise, as I thought about it myself.

I’ve never met Katie or her parents. All I have learned about them, I’ve read on their website. It’s been a hard thing to try to follow the recent news about her, because it hits so close to home. Katie is five months old – the same age I was when I had my first heart surgery.  She’s had the Bi-Directional Glenn; I’ve had the original version of that operation. Katie is at Yale New Haven Hospital, where Dr. William Glenn himself lived and worked. I’ve read that Dr. Glenn, despite being a world famous heart surgeon, would leave his home on Saturday mornings and walk to Yale’s football field to cheer on the home team. He sounds like my kinda guy.

Katie has Hypoplastic Left Heart Syndrome (HLHS). I have Tricuspid Atresia, which is occasionally referred to as one of the defects that make up Hypoplastic RIGHT Heart Syndrome. (HRHS) The term HRHS wasn’t even invented when I was born (I don’t think anyone had thought of HLHS, either) so I’ve always just referred to myself as having Tricuspid Atresia. But when you think about it, Katie’s heart and mine are nearly mirror images of each other.

Spooky. As the title of this post notes, it hits you on the street where you live.

After my surgery at Johns Hopkins in 1967, one of the doctors mentioned in passing that we were one of only two families who had made it in that night. The other child had been born premature, and despite being healthy in every other respect, hadn’t made it. The doctor shook his head. “Some children…they just aren’t fighters.”

There’s no doubt about it, little Katie is a fighter. She’s hanging on for all she’s worth, clawing and spitting and digging her nails in. Keep fighting, Katie! I’m pulling for you!