An important date to celebrate next year

kacey2004 · May 25th 2022, 2:27am

February 14th is Valentine's Day obviously, but it is also Congenital Heart Defect Awareness Day. I did not announce this yet, but I was born with a rare heart defect called ebsteins anomaly which occurs in about 1 in 20,000 live births. I thankfully had surgery for it in 2005, but I would greatly appreciate that in 2023, you can celebrate Valentine's Day, but also Congenital Heart Defect Day as it would mean a lot to me. My heart still beats to this day and hopefully will until I eat my heart out (bad joke). :lovey:

joannainthemiddle · May 25th 2022, 7:00am

What is different about your heart when you have ebsteins anomaly? Valentines day is yucky so I'll have a big party for all the people with ebsteins anomaly instead.

BJade · May 25th 2022, 8:57am

I'll definitely be celebrating it

I have a cousin who was born with holes in her heart. After a few surgeries most of its been stitched back together. Still kinda ongoing I think. But she's alive and able to have fun :chairdance:

kacey2004 · May 25th 2022, 12:28pm

joannainthemiddle wrote:

What is different about your heart when you have ebsteins anomaly? Valentines day is yucky so I'll have a big party for all the people with ebsteins anomaly instead.

Well, when I was born, the tricuspid valve in my heart was in the wrong place, along with the flaps which are malformed. Currently, my heart is fixed, but I am on medication for the rest of my life which helps control how many times my heart beats per minute.

kacey2004 · May 25th 2022, 12:30pm

BJade wrote:

I'll definitely be celebrating it

I have a cousin who was born with holes in her heart. After a few surgeries most of its been stitched back together. Still kinda ongoing I think. But she's alive and able to have fun

I just want to say that your cousin is one strong woman and I'm glad that she is still alive, I know she will survive the whole process, cause every woman is strong.

joannainthemiddle · May 25th 2022, 8:38pm

Are there any effects from the medication that you don't like?

kacey2004 · May 25th 2022, 8:42pm

joannainthemiddle wrote:

Are there any effects from the medication that you don't like?

nausea for some reason

joannainthemiddle · May 26th 2022, 7:57pm

Do you hear from the surgeon who did the operation?

kacey2004 · May 26th 2022, 7:58pm

joannainthemiddle wrote:

Do you hear from the surgeon who did the operation?

haven't seen him since 2005, aka when my surgery happened

joannainthemiddle · May 26th 2022, 7:59pm

Oh OK well I wondered if you had check ups.

kacey2004 · May 26th 2022, 8:03pm

joannainthemiddle wrote:

Oh OK well I wondered if you had check ups.

i just take medication now so

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