Congenital Heart Disease

It’s the Most Wonderful Time of the Year!

To Raise Awareness of Congenital Heart Defects/Disease

So many great congenital-heart-defect awareness-raising things are happening here in Tallahassee this week and next week!

Tonight at 11 p.m. — immediately following Barbara Walter’s special, “A Matter of Life and Death,” at 10 p.m. on your local ABC channel — one of Broken Hearts’ very own, Ramsey Brown, will be featured on a segment our local ABC affiliate, WTXL.

Ramsey a few days post transplant.
Who looks that great after transplant?
Ramsey does!

Ramsey will share her story about growing up with congenital heart disease and her recent heart transplant at Shands at the University of Florida.

On Sunday, WTXL will interview Broken Hearts about its upcoming Open House on Tuesday, Feb. 8. Join us for our Open House and learn more about congenital heart disease, available resources for families and about Broken Hearts! Since its inception in June 2006, Broken Hearts has grown from its two founding families to more than 150 families across Florida, South Georgia and a few spots across North America. (Come over to Facebook and LIKE us!)

What events do you have going on during this Most Wonderful Time of the Year?! Tell us about them in the comments section below.

You know, as excited as we are about all that’s going on, we are missing more than ever one of our most influential congenital heart advocates, Steve Catoe — our Funky Heart. In Steve’s spirit and in his honor, we’ve taken the popular Christmas song, “It’s the Most Wonderful Time of the Year,” (I’m sending you to a neat video, featuring the original song.) and done something Steve used to love doing — rewriting the lyrics to make them CHD/heart-related!

Here’s to you, Steve!

(To the tune of “It’s the Most Wonderful Time of the Year” by Andy Williams)

It’s the most wonderful week of the year.

With our kids boist’risly yelling,

And everyone telling you,

“Just be a dear,

“And spread CHD stories all the year.”

It’s the most – most vital week of them all

With those CHD messages and advocate meetings

When friends are on call

It’s the most-most vital week of them all.

There’ll be parties for vic’tries,

Lighting candles for memories, and

Telling our stories on shows

There’ll be scary heart stories

And tales of our glories of

Triumphs we’ve made as we go.

It's the most wonderful week of the year

There’ll be reasons for sharing

Our hearts we’ll be baring

For our loved ones so dear

It's the most – most heard week of the year!

It’s the most wonderful week of the year.

With our kids boist’risly yelling,

And everyone telling you,

“Just be a dear,

“And spread CHD stories all the year.”

Surviving a Congenital Heart Defect

We are thrilled and honored to feature a guest blog by Steve Catoe, author of Adventures of a Funky Heart, one of the most informative and enlightening blogs out there, highlighting congenital heart disease. Thank you so much, Steve, not only for a great post, but for all that you do for the congenital heart community.

My name is Steve Catoe. I am hopeful that some of you remember me; last February I spoke at the Broken Hearts of the Big Bend Regional Forum on Congenital Heart Disease. 

I am 43 years old and I have a congenital heart defect -- tricuspid atresia, to be specific. In tricuspid atresia, the tricuspid valve inside of the heart never formed. There is a wall in the spot it is supposed to occupy, and because of that my right ventricle is very small and practically useless. A heart defect strikes 1 in every 125 live births, but tricuspid atresia is one of the rarer defects. Experts say that 1 person out of every 10,000 people have what I have.

A few years ago my cardiologist told me that as far as he knew, I was the oldest living tricuspid atresia patient living. A few weeks later I met a fellow tricuspid, a woman who is a couple of years older than I am. Personally, I’d rather be No. 2; people expect the leader to dress nice, act dignified, and be the spokesman for the entire group. I’m just a simple country boy, and I don’t do any of that very well!

My “secret” to living so long with a congenital heart defect could very well surprise you. To live with a heart defect, you have to first make peace with the fact that your defective heart will one day give out.

That may seem like a harsh statement, especially to a young CHDer or a heart parent. But odds are, that is what will happen. Accidents do occur, but most people succumb to natural causes. We will, too -- but our weak hearts usually mean that we are granted fewer days.

And once you understand and can live with that fact, then you can ask the real question: What can I do to push that Final Day further into the future?

The short answer is “Take care of yourself!” Taking care of yourself encompasses everything from watching your diet, starting an exercise program, and even includes simple things like fastening your seat belt.

A proper exercise program can strengthen your heart and give it the energy it needs to fight off infection and illness. The stronger you can make your heart, the better - especially if you are starting with a weak heart. Be sure to ask your doctor what exercises work best for you, but for me, the answer is walking. With a walking program, you can move at your best pace and go as far as you are able -- and the next day, attempt to go just a little further! As you pick up the pace, your heart rate goes up and you really start to exercise your lungs. Over time, what began as a gentle stroll can turn into an intense exercise routine. And all you need is a good pair of shoes.

Watch your diet, especially if your doctor has given you a diet to follow. Try to reduce the amount of salt you consume. Your heart has to pump blood to all parts of your body, and the more you weigh, the harder it has to work. Losing as few as 5 pounds helps, but if you could lose more, it is usually a good idea. A heart that is used to pushing blood through a 175-pound body will have an easier job if you could lose 10 pounds!

Don’t let dumb luck ruin your life. Fasten that seat belt and don’t drive like a maniac. Don’t smoke, don’t drink to excess, and don’t do illegal drugs. Too many people fought to keep you alive and you have survived too much. Don’t waste your life by giving it away.

Something else you can do -- and it would be a major factor in surviving a heart defect -- is that even though you understand that your heart will eventually let you down, don’t run and hide. Don’t be scared, and never say “I can’t do that, I have a bad heart.” 

There is more than one way to skin a cat, and probably more than one way to accomplish any task you face. Don’t just live your life...embrace it, enjoy it, and make the most of it. Inspire others.

And remember that every heart -- especially yours -- deserves to live a lifetime!