Good-bye Funky Heart

I've been lucky to have been in contact with some wonderful advocates, parents and survivors of CHD. Steve Catoe, author of Adventures of a Funky Heart, was among my favorites. He passed away yesterday at the age of 44, living his life with only a half-heart but to the fullest. I have faithfully followed his blog, posted links to his, always appreciating his great humor and remarkable knowledge of CHD. His perspective has helped form my outlook, given me a wide-variety of cardiac knowledge, and he's been a guide on the "do's and don'ts" of raising a child with a special heart. Steve, you will be missed in the heart community. May your legacy live on in all of the hearts you've touched!

Email from Steve Catoe, August 12, 2008

Thank me? No, thank you!!! Not only do I appreciate your kind words, but you have a TON of readers. I average 15-20 readers, but yesterday my count was 78! Major wow factor!

Maddie is going to live well past her thirties, I bet. You'll dance at her wedding. What happens is, when someone gives you an estimate, they can't predict what the technology is going to do between now and then. The technology will advance and EVERYONE'S life expectancy will increase. Now there is always a chance- I asked my cardiologist how long she thought I would live and she basically said "We're off the page here...BUT I can see you living for a good long time." I like the good long time part, but there is always a small chance.

I had my Glenn first, back in 1967. If you read that, I'm sure you read that it isn't the same operation as the Bi-Directional Glenn. With the bi-Direction, the Superior Vena Cava is cut and then sewn into the Pulmonary Artery. In the old version (my version) the Superior Vena Cava is cut but the Pulmonary is also cut, and the vessels sewn together. The right side is sewn in, the left is usually not. So my right lung handles all my blood flow. (I think...I'll write that down and ask my Cardio to make sure.) They had to put my pacemaker in my abdomen because of this. Pacemaker leads usually enter the heart through the Superior Vena Cava, but if you go down *my* SVC, you go into the lung.

My second operation (in 1988 at the University of Alabama-Birmingham, or UAB) was the modified Blalock-Taussig. But they found a good vein and didn't have to use the gortex connector tube the "book" calls for. That's why I try to tell folks to find out what they did to YOU-- it might deviate from the accepted plan!

I was at UAB for my third operation, (1988) the Fontan, but it never happened. Scar tissue from operation 1 and 2 stuck to the back of my ribcage, and when they opened me up, it tore. (Complete surprise, it didn't show up on the X-rays.) Suddenly there was blood all over the place, and they were basically trying to keep the boat from flooding. (Bail faster, Doc!) So they had to abandon the operation and save my life. So I got all of the misery of surgey and none of the results!

But I'm doing well. I've had bumps in the road--all heart patients do--but overall, it's been good.

Why don't you join the ACHA? It's free. Access the member boards, and post a message saying that you are the parent of a child with Pulmonary Atresia and would love to communicate with an adult who has it. I bet someone--several someones--will answer! (Hint: Post on the General Forum, it sees more visitors)

I'm not going to say anything about PA to you, since it's a different defect. And if someone says "I have PA and I'm not doing well at all..." it does not apply to you. Two people can have the same defect, but have completely different symptoms. One's ASD is bigger/smaller than the other persons, or it's in a slightly different area, or a number of differences. Your defect is your defect, and it is going to affect you in a number of ways. So when someone says, "My cousin has that and ..." feel free to ignore them. (Especially if they have a horror story! Horror stories belong at the movies; the ONLY way you will pay attention to a horror movie is if you have a big tub of popcorn!)

Thanks again for your kind e-mail (and the connection to your blog!) and I am always here if you need me. Write anytime!

Always yours;
Steve
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Adventures of a Funky Heart! blog:
http://tricuspid.wordpress.com/

being thankful

photo by Stacey Paysee
We have so much to be thankful for this year...growing, thriving kids, a relatively healthy year for Maddie, settling into our home and making new memories here, having opportunities to help others, and the love and support of so many in our lives. Blessed doesn't sound adequate enough for the gratitude we feel in our hearts.

Especially to God.

These two...

They are the best of friends, most of the time. They're 7 and 5. They play constantly...the usuals are: legos, star wars, football, matchbox cars, dragon slaying, building blocks, detectives, imitating and re-playing any movie or game they've recently watched on tv. You name it, these guys have probably played it. During their make-believe playing, they ad lib and change the course of the game which includes on going commentating, sound effects, and NOISE. They just go with it and watching them reminds me of an episode of the tv show, "Whose line is it Anyway?" but they're probably more entertaining.

As I was making dinner tonight, I overheard them scheming their next choice of play. Here's how the conversation went...

Jace: "Cade, who do you want to be now?"

Caden: (In a mono-tone, disappointed sounding voice) "I'm just going to be a regular guy, who doesn't have a job or even a car. He's just a guy that doesn't do much Jace!"

Jace: "Ok Cade. Just remember, you're my biggest fan."

Too funny! I couldn't help but laugh out loud :) I love these boys.

Trick or Treat!

Halloween Preschool Party... Maddie got to stay with Grandma Allred as her helper, and Caden and I enjoyed fun centers with the preschool class.
I was able to help with Jace's 1st grade Halloween party...he made a great Indiana Jones.
Getting ready to go trick-or-treating...Jace- Indiana Jones, Cade- Jake Sully from Avatar & Maddie- Strawberry Fairy.
We met up with our cousins at the grandparent's houses...here's Savanna, Braydon and Nanna's friend, Reilli at Grandpa and Grandma Allred's.
Maddie and Kylie Rose at Nany and Ba's. We enjoyed trick-or-treating in Symrna with Kylie, Uncle Ryan, Aunt Jess and Nany and Ba. We only stopped at 4 places but had plenty of candy to share!
Jace holding a crawfish at Uncle Donny and Aunt Shannon's...they did a crawdad dinner the night of Halloween at their home. Jace loved catching these in the bucket and "playing" with them. Luckily, he never got pinched... they're cute but creepy little things!