The Great Eight!

The Tricuspid Atresia Club!

This photo was taken May 3, 2008, at the Adult Congenital Heart Association‘s Bi-Annual Convention, held in Philadelphia. As you’ve probably guessed, all eight of us (I’m in the photo, too!) have heart defects. What is so unusual is that we all have the same heart defect. Eight adults, all living proof that Tricuspid Atresia (and heart defects in general) don’t have to hold you back.

Most of the enjoyment of the Convention was the opportunity to get together with people who understand. As I mentioned in an earlier post, almost everyone in attendance had “been there and done that”, and you didn’t have to explain things. For example, if you have a CHD, sometimes you just have a BAD DAY. Nothing is really wrong, you just feel as if your Get Up and Go actually got up and left. You can’t really describe it, other than to say you feel like a car with an almost empty gas tank. Your parents almost understand, since you’re their child and they can read you like a book; your Cardiologist probably understands, since he sees this sort of thing everyday. But to actually hang out with people who have been through the same thing… well, it’s a relief. They know exactly what you’re dealing with. Even though the convention lasted three days, friendships were made that will last a lifetime.

Have you figured out who I am yet? This photo leaves me scratching my head — all of us are survivors, obviously. And the Tricuspid Atresia Ladies are all beautiful. But the guy staning on the right got all the handsome DNA, all I got was a maroon jacket and a silly grin! 🙂

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11 Responses to “The Great Eight!”

  1. Anonymous Says:

    Great to see this photo. I am mum to a one year old girl with Tricuspid Atresia and this gives me great hope for the future.

    Thank you

    Jenni
    United Kingdom

  2. Steve Says:

    Thank you for your comment, Jenni! There certainly aren’t many of us Tricuspids around… the average is about 1 person per 10,000 live births. But there is a LOT of hope for your daughter! All of the TA patients in the photo are doing well, and medical science makes advances every day. Personally, I just celebrated my 42nd birthday, and I’m hopeful that she will do just as well!

    Thanks again;

    Steve

  3. carolyn compton Says:

    this is an absolutely awesome photo! my boy clarence is 18 months and he has TA. he’s had the first surgery and i find it hard to believe there’s much wrong with him at times. his twin brother fergus reminds us because he has chunky legs and clarence’s legs are chicken legs as he hasn’t had the complete fontan yet. anyway, i laughed with joy to see this photo. i am not in la la land. i just thought i was overly optimistic (mothers try to be)but i’m actually being realistic with my expectations for clarry’s future.

    i was worried he may have to wear glasses, having only seen your photo on the blog…..until i saw that there is only a 1 in 8 chance of him having to do that. great statistics.

    thanks for your blog

    carolyn

    we live in sydney australia

  4. Cheryl Gabriel Says:

    I can’t even explain how I am feeling right now to have found this site. I too was born with Tricuspid Atresia, I’m 29 years old and am relatively healthy. I just started developing arrythmias and was feeling really down in the dumps of not knowing anyone with my condition and then I found this…Thank you for your blog.

  5. carolyn compton Says:

    hi cheryl, there must be heaps of people. i am enjoying the day to day nature of reading this blog too.

  6. Chrissy Says:

    I am a proud parent of a CHD baby. Charlotte is now 4 months old and just underwent her second surgery for a bidirectional glen. She is home and doing well. Its good to know that there are others out there that I can talk to about her defect. There is not much for support in the area that we live in and its hard to find assistance to help us financially and emotionally. Do you know of any organizations out there that help families with children with CHDs?

    • Joye Says:

      Hi Chrissy!

      Look into Mended Little Hearts and Saving Little Hearts. Both of these organizations are absolutely wonderful!

      • Steve Says:

        I’ve had the honor of speaking at a combined Mended Little Hearts/Saving Little Hearts CHD Conference. GREAT people are in these organizations!

  7. Jodi Price Says:

    What a great photo! I love to see so many TA’s out there. I have a 3 year old so it is very inspiring to me and others. All of you look like you’re having a great time!

  8. Heather the Heroine! « Adventures of a Funky Heart! Says:

    […] I had never met another person with Tricuspid Atresia, and suddenly there are eight of us, posing for a photo together! And there were more than eight of us; but this is all that were around when the “group […]

  9. The Ol’ Man « Adventures of a Funky Heart! Says:

    […] Atresia. My Cardiologist told me that I was his oldest TA patient a couple of years ago, then I met a group of other Tricuspids at the Adult Congenital Heart Association’s national convention in Philadelphia. Most of […]

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