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/
6 comments:
I just still can't believe it. His passing is truly a loss for so many (but a gain for Heaven, that's for sure!)
Steve Catoe was such a blessing to all of us connected to CHD. He was a pioneer, and through his blog and willingness to have an "Open Heart" all of us benefited. I hope his fine example will continue to grow. Steve surely "payed it forward". He may have had half a heart but he lived with a huge, whole one. What fine young man.
He truly will be missed.
Susie Stewart (Maddie's Nany)
You know, I'm almost positive I did become a Funky Heart reader through your blog! I am so sad about Steve's passing. He will be deeply missed by so many.
It's hard to believe that we won't be able to read anymore blog entries from Steve. I think it is awesome that you have an email from him. The advice he gave is so comforting. He will definitely be missed!
Oh, Katie...I'm so sorry. I know how much he touched your lives and the lives around you...including ours. What a HUGE blessing he is on MANY levels and what a sign of HOPE and HEALTH for all heart babies.
Hugs to you!
Wow. What an inspiration he was. This has me in tears... I am sorry Katie - but I am thankful you had a connection to this wonderful man.
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