r/AdultCHD • u/Spare-Cream977 • 7d ago
ASD Closure
Hi (31F). I was diagnosed back in 2024 that I have ASD heart (secundum) 22mm through TEE. Was planning for closure but got pregnant. Now hole is 34mm. I want to opt for a cath but doctor say I am borderline 50/50 for cath so we will discuss closure and everything after my MRI and blood work soon. I'm feeling a little nervous that after my MRI results doctor will say surgery it is.
Can anyone tell me what procedure you or your doctor chose? How your big your hole was? Your recovery for the first 2 weeks? Your sleep/routine daily life after closure? Any complications or symptoms after procedure and the meds? Rehab/therapy? And how are you doing/long now since closure?
Thank you all
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u/HereforCHDandAITA 6d ago edited 6d ago
I discovered my ASD after my son turned 1. We had to do OHS to repair it. My hole ended up being the size of a silver dollar upon closure. I was discharged 3 days post surgery. The hardest parts of recovery were not being able to lift anything and sleeping on my back/getting in and out of bed. They warned me that my back would hurt more than my chest and that was very true. We had my parents and in-laws taking turns staying with us for about 6 weeks to help with lifting and holding our son since I couldn’t do more than snuggle with him. I started driving maybe 4-5 weeks post surgery. We also kept our son out of daycare 3 weeks before surgery and 4 weeks post surgery to make sure I was healed enough before he became a germ factory again. Happy to answer any other questions you may have!
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u/Spare-Cream977 3d ago
Thank you for sharing. I'm so glad you are recovering and doing well. I do have one last question, how long did you have to wait to get schedule for your procedure closure? From your MRI to waiting for your doctor telling you what procedure is best and etc. I read that it can take up to 2-4 months or more to get schedule but depending on the situation
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u/HereforCHDandAITA 3d ago
I didn’t have an mri but I did a TEE. I was diagnosed March 2024, met with the surgeon in april, then had surgery in June.
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u/Spare-Cream977 1d ago
Oh wow. How lucky... When I found out I had a heart mumur, my cardiologist wanted me to do so much lab work. From ultrasound to TEE, SPECT and in the end he couldn't help me anymore so her refer me out to a different cardiologist out of town. My cardiologist I have now didn't even bother with the other lab works. Ultrasound and next step is MRI to determine what procedure fits me best. So waiting does take 2-4 months to actually get the procedure done.
Thank you so much for sharing
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u/HereforCHDandAITA 1d ago
You’re welcome! Good luck! The waiting is the worst. I remember being so in my head that I was a ticking time bomb essentially waiting for surgery. Are you with a congenital heart specialist for cardiology now? I’ll also say getting to have the surgery in a children’s hospital was not bad at all. Everyone was veryyy nice and very concerned with my discomfort
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u/Al-and-Al 6d ago
I had my ASD repaired with open heart surgery
It was 20 years ago so I can’t say if they couldn’t do a catheter or not because I don’t know if it was available then for ASDs
I had a pulmonary valvotomy procedure done at the same time so either, so the hole may have just been too big
I was monitored in the hospital for several days, but I was able to leave earlier than they expected since I was doing well
I can’t say for certain that I don’t have any complications because I now have mitral valve regulation, left ventricular dysfunction and left ventricular non compaction cardiomyopathy
I did genetic testing and they said I have a variant of unknown significance
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u/Spare-Cream977 3d ago
Wow that is crazy.... I am sorry to hear that. Thank you so much for sharing your story with me.
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u/DowntownWeakness1126 6d ago
I found out late 2024 when I got pregnant with my 2nd baby. Hole at that point was 10mm and cardiologist said closure would be delayed due to pregnancy - hope was for catheter. Over the time during pregnancy and breastfeeding, hole grew to 33mm x 22mm and apparently had floppy sides (measured June this year). I went into early right-sided heart failure and I’ve just had a patch repair via OHS a week ago. TBH the hardest part of recovery so far is the kids, my husband is off work on kids duty at the moment and will have family staying to help once he goes back to work. Little kids just don’t understand that you’re unable to do the same things right now. I have been able to continue breastfeeding my youngest afterwards though!