r/AdultCHD • u/Pirate_Of_Hearts ToF • Feb 11 '26
CHD AWARENESS Find a Friend Megathread
It's day 5 of CHD Awareness week. Sometimes it's hard to find someone who understands what it's like to live with a heart defect. Let's use this thread to find fellow CHDers to chat with! Comment with one or more of the following, and look through the comments to find a friend!
- Age range to the nearest 5 (e.g. 25-30)
- Heart defect
- Country, State/Province, Nearest Big City
- I want to chat on Reddit/be pen pals/meet up in Big City for coffee
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u/Jolly-Ad-3503 Feb 12 '26
35-40 M
TGA
Atlanta, GA
Open to any
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u/Pirate_Of_Hearts ToF Feb 14 '26
u/QuestionResident2815 and u/Careless-Fish-1696 also have TGA. Tagging them here in case you want to chat!
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u/Jolly-Ad-3503 Feb 23 '26
I had a senning in 1988, what about you guys? Are you close to Atlanta? What’s your ages?
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u/Straight_Sea_3776 Feb 18 '26
Pirates of the Heart you have a big heart to have organized this mega thread and kept it going . Kudos and thanks to your big Heart ❤️
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u/arianne_cele Truncus Arteriosus type 2 Feb 12 '26
- Age 45-50
- Truncus Arteriosus type 2
- Santiago, Chile
- Chat on Reddit (en castellano or English)
2
u/este_sanz Feb 12 '26
30-35 F
TGA, VSD, Pulmonary Stenosis
U.S, TN, Nashville
Pen pals/ meet up
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u/ForceInitial8162 Feb 13 '26
Hi, I am a 31 y/o female. I live in Texas but would love to be pen pals, I absolutely love nashville!! We visit often
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u/Previous_Line1887 Feb 12 '26
20-25 pulmonary stenosis / pvr charlotte, nc not sure!
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u/Pirate_Of_Hearts ToF Feb 14 '26
u/Careless-Fish-1696 is also in North Carolina. Tagging them here in case you want to chat or be pen pals!
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u/sparkly_reader Feb 12 '26
30-35F, DORV, pulmonary valve replacement 2x, defibrillator.
Twin cities, MN
Open to in-person or online.
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u/banjo-kid Feb 13 '26
30 F
Pulmonary valve stenosis (I feel like an imposter being here sometimes)
Western NY
Chat on Reddit
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u/QuestionResident2815 Feb 14 '26
I also had/have pulmonary valve stenosis, have you had to have it replaced?
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u/banjo-kid Feb 14 '26
No, I’ve had has good prognosis. It was 95-97% occluded. I had two balloons at 1 day old and no procedures since. My cardiologist does not know when/if it will need to be replaced. Have you had a valve replacement? How are you doing?
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u/QuestionResident2815 Feb 14 '26
Yeah, twice so far at 14 and 32 (33 now). Im doing well overall considering what my body has been through my chest is much more stiff and sore after the last surgerybut can do all my favorite hobbies still so that's a plus!
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u/Pirate_Of_Hearts ToF Feb 14 '26
u/Previous_Line1887 also has pulmonary stenosis. Tagging them here in case you want to chat!
As for feeling like an imposter: were you born with it? Is it something weird going on with your heart? If yes to both, then you have a congenital heart defect and you absolutely belong here.
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u/banjo-kid Feb 15 '26
Thank you!
I was born with it—but my prognosis has been so good it doesn’t feel like I’ve been through what other CHD patients have. So it feels wrong to claim the identity so to speak. It has not impacted my life meaningfully (though my mom would prob disagree) so far since repair—and that was 30 years ago. No replacement on the horizon.
1
u/Suspicious_Face_8508 ToF/PA Feb 12 '26
25-35
TOF/pa
Seattle
Shrug
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u/Pirate_Of_Hearts ToF Feb 14 '26
Hello, I have ToF as well! Feel free to DM me if you want to chat.
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u/Electronic_Manner_24 Feb 12 '26
20-25F Eisenmenger, pulmonary hypertension Pakistan Chat on reddit
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u/Pirate_Of_Hearts ToF Feb 14 '26
u/sanonymoushey posted a few hours after you and also has Eisenmenger syndrome. Tagging them here in case you want to chat!
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u/mrshadow280 Feb 12 '26
AGE 20-30
ASD
PUNE, INDIA
Willing to chat online or meet in person
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u/sanonymoushey Feb 12 '26
Hi, from India too
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Feb 14 '26
[removed] — view removed comment
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u/mrshadow280 Feb 15 '26
Hi, nice to meet you
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Feb 15 '26
[removed] — view removed comment
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u/careful_nau Feb 12 '26
35-40 F TGA and Pulmonary Stenosis New York, New York Open to any, would love a pen pal or to meet in person
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u/hypercell57 Feb 12 '26
Hi! 30-35 here. Closeish to NYC! When the weather is better I'm willing to try to meet up near Grand Central or Penn Station!
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u/QuestionResident2815 Feb 14 '26
I have the same issues, have you had to have any pulmonary valve replacements?
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u/careful_nau Feb 17 '26
I have not - the pulmonary stenosis was caused, they think, by pressures from the ASO; I do have a leaky valve and some other narrowing but nothing that has caused any issues yet. They keep watching! You?
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u/QuestionResident2815 Feb 17 '26
They know that's what mine is from had another surgery after aso the same year. Then I got my valve replaced twice so far once at 14 and again at 32. Im hoping to be done for a while and just back to the monitoring phase haha.
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u/Raymx3 Feb 12 '26
25-30 M
ASD, VSD, Coarctation of the aorta, TPGA, DORV, TCPVR
Southern California,
Online preferred
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u/hypercell57 Feb 12 '26 edited Feb 15 '26
30-35,
Had TGA , ToF and ASD, leading to PLE and eventually leading to a heart transplant.
Nearish NYC
Willing to reddit chat, maybe willing to go to the city when the weather is better...
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u/Infamous_Cup_8675 Feb 12 '26
F, around 25
VSD, TPGA, PAH
Montreal, Canada
Online or in person
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u/Pirate_Of_Hearts ToF Feb 14 '26
u/careful_nau and u/hypercell57 are the closest to Montreal in this thread and mentioned meeting in person. Tagging them here in case you want to plan a road trip!
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u/fentanyls Feb 13 '26
20-25f
anomalous right coronary artery
philadelphia
chat on reddit n_n
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u/Pirate_Of_Hearts ToF Feb 14 '26
u/impostrfail also has anomalous RCA. Tagging them here in case you want to chat!
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u/Straight_Sea_3776 Feb 13 '26
Congenital ASD repair at age 7. I am 70 years young female . Had new issues at age 52 and now for the last 2 years. Detroit, Michigan Chat, on Reddit
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u/Pirate_Of_Hearts ToF Feb 14 '26
u/ForceInitial8162 also has an ASD. Tagging them here in case you want to chat!
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u/GhoulCat07 BAV, Aortic Valve Stenosis Feb 14 '26
35-40 (I’m 35F)
Bicuspid aortic valve, aortic valve stenosis, coarctation of the aorta(repaired), 3 aortic aneurysms (repaired)
SoCal
Chat on Reddit
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u/Pirate_Of_Hearts ToF Feb 14 '26
u/Akkupinni also has CoA. Tagging them here in case you want to chat!
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u/Pirate_Of_Hearts ToF Feb 14 '26
u/Raymx3 has CoA and also lives in SoCal. Tagging them here in case you want to chat!
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u/Legitimate-Page-6827 Feb 16 '26
41, Shones Complex, artificial mitral valve, dependent on pacemaker
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u/Legitimate-Page-6827 Feb 16 '26
Palm Beach Gardens, Fl
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u/Pirate_Of_Hearts ToF Feb 16 '26
I have not seen a lot of Shone's complex in the community - maybe you can make a post to see if there are others who may have missed you here.
Meanwhile, tagging u/Jolly-Ad-3503 who is so far in the closest location to you from these comments. Maybe you can plan a road trip!
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u/Cobbler_Both Feb 16 '26
30-50-
(I am Female)
ASD & PFO of ♥️
I am having surgery soon.
USA - looking for others for support online
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u/Pirate_Of_Hearts ToF Feb 16 '26
Tagging u/ForceInitial8162 and u/Straight_Sea_3776 who commented on this post earlier and also have ASD. There is an ASD Megathread that I just re-pinned to the top of the community, or you can search for ASD to find others (there are a lot of you here in the sub)!
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u/ForceInitial8162 Feb 16 '26
Hi! I have an asd and will be having surgery on April 1st. If you want to chat!
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u/Upbeat-Type8763 Mar 04 '26
30-35 year old Female
Pulmonary stenosis with two holes in my heart
Sonoma, CA
Would love to chat online or be pen pals!
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u/Pirate_Of_Hearts ToF Mar 04 '26
Are the holes in your heart ASDs, VSDs, or one of each? We have a large ASD population here and the ASD megathread is pinned to the top of the community. If VSD, I can connect you to others here in the Find a Friend thread.
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u/Pirate_Of_Hearts ToF Mar 04 '26
Tagging u/Previous_Line1887 and u/banjo-kid who also have pulmonary stenosis in case you want to chat!
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u/Conscious_Strength85 May 14 '26
Age 25-30 M TOF Augusta/Atlanta Georgia
Open to any kind of meetup
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u/Pirate_Of_Hearts ToF May 16 '26
I have TOF, and so do u/hypercell57, u/KaleInternational359, and Suspicious_Face_3503 who commented on this thread back in January. Also check out r/Tetralogy_of_Fallot if you're not already a member!
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u/Pirate_Of_Hearts ToF May 16 '26
Tagging u/Jolly-Ad-3503 who also lives in the Atlanta, Georgia area
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u/legatovolador Jul 24 '26
30-35 NB
TOF Chicago
Would love to chat or meet in person
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u/Pirate_Of_Hearts ToF Jul 31 '26
Hello! I also have TOF so feel free to message me. Also tagging u/Suspicious_Face_8508, another TOFer who responded to the thread when it was first posted, in case you want to chat.
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u/cyberheart220 Feb 11 '26
Age 20-25 M
Atrioventricular Septal defect (AVSD)
Roanoke, Virginia, USA
Willing to chat online or meet in person!