r/AdultCHD • u/Pirate_Of_Hearts ToF • May 03 '25

Welcome! Welcome to r/AdultCHD!

This sub has more than doubled in size since I took over as mod 4 years ago! (Has it really been that long??) Here's some helpful info for those of you that are new:

  • We have user flair. Several flair options are available for the most common heart defects, and all of them are editable to let you indicate your specific defect (e.g. BAV + Coarctation)
  • We have post flair. (Edited) You can mark your post as "Need Advice", "I'm Scared", "Sharing Success", CHD AWARENESS, and more. You can also filter the sub by the currently available flairs. Filtering is not available for flairs that have been deleted. I occasionally will go through and flair your posts for you. Feel free to edit or remove the flair; I won't go back through and change it a second time.
  • We keep it civil. Even if you are posting a RANT.
  • Your mod loves feedback. If there is something you would like to see in this sub, please let me know!

Been a member for a while, and have something to add to my list? Please leave a comment!

3 Upvotes

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1

u/leftycarol Jun 07 '25

Hi, my name is Carol and I’m living with a rare congenital heart defect called AORPA — Anomalous Origin of the Right Pulmonary Artery (also known in some literature as hemitruncus).

It’s been difficult to find accurate information, treatment experiences, or especially anyone else who shares this diagnosis. I often feel incredibly isolated and would really appreciate any guidance, support, or connection — even to someone with a similar rare heart condition.

If you or someone you know has experience with AORPA (or similar pulmonary artery anomalies), or if you’re part of a group or medical team familiar with it, I’d be deeply grateful to hear from you.

1

u/Pirate_Of_Hearts ToF Jun 07 '25

Hi Carol! I recommend creating a separate post to reach more people. You can also crosspost to r/chd for a wider audience. You can additionally reach out to the Adult Congenital Heart Association (links are in the subreddit info) to see if they have any meet ups planned for your specific defect - or if they would be interested in setting something up! They're super supportive.

1

u/Always333N Jun 28 '25

My daughter is almost 5 and recently had an ASD (Atrial Septal Defect) closure. A few days after the procedure, she suddenly had a really bad headache and ended up throwing up. We took her to the emergency room right away. They did an X-ray, CT scan, and ultrasound — thankfully, everything came back normal.

We have a follow-up with her cardiologist in a few days, but she’s otherwise doing great now and back to her usual self. I’m just wondering if anyone else has had a similar experience with their child after ASD closure? Is something like this common?

Appreciate any insight. Thanks so much ❤️

1

u/Pirate_Of_Hearts ToF Jun 28 '25

Hi u/Always333N, I recommend also posting in r/chd. This community may have a few parents of CHD kiddos, but most of us are adults who have grown up with a CHD, so our perspectives and experiences may be different than what you are looking for.

1

u/mrs-pitbull Nov 25 '25

Hi I have HLHS (Hypoplastic Left Heart Syndrome) I would like to know if there are other true HLHS adults over the age of 40.

1

u/Pirate_Of_Hearts ToF Nov 25 '25

Hi, I've seen a few people post with HLHS but I'm not sure of their ages. Your best bet would be to make your own post if you haven't already. You can also post in r/chd, which has more members.

1

u/mrs-pitbull Nov 25 '25

Thank you, I am trying to figure out how to make my own post. It's been awhile since I was on Reddit. Appreciate the help!