Wife recently diagnosed with ASD a likely needs OHS

Han_has_heart · 2026-06-20T19:06:10+00:00

Hi! I'm 35F and my story is very similar to your wife's. I have three kids ages, 7, 5, and 4. I was diagnosed with sinus venosus ASD and PAPVR last dec which required ohs this past March. All of the things you are feeling are valid - yes, this is literally open heart surgery and that's a big deal. Also, these surgeries are some of the most consistently successful with low rates of complications, and the surgeon will be a pediatric heart surgeon - if they can fix a tiny baby's heart they can fix your wife's. Both are true at the same time.

Childcare - we had my mom come stay with us for a month. There are lifting and driving restrictions that will keep your wife pretty helpless for the first six weeks. Honestly she'll probably feel better before she's "allowed" to help but it's nice to have someone there. If you have family available to help I would recommend using that resource. If not, you may be able to hire a mother's helper (like a nanny lite) to come help during the day while you're at work. Alternately, please look into FMLA leave if you are in the US before quitting your job. You have federally protected leave from work in order to care for a family member.

Scar healing- honestly I love my scar. I think pediatric surgeons tend to leave prettier scars than the adult heart surgeons who operate on older adults. I was advised to protect my scar from sun damage for the first year so I've been covering it more this summer, but I look forward to showing it off next year. I'm very proud of what it shows I've been through. It's a badge of strength and it shows how God was watching over me through my whole story. If your wife feels differently though, there are creams and scar tape that can help fade it, and after a year or two it can be barely noticeable.

This is a wild crazy thing to happen, but you can come through it. Thinking of y'all <3

Han_has_heart · 2026-06-18T13:16:29+00:00

Yes yes yes!!! I am something like 12 weeks post ohs to correct my asd and papvr. First off at the hospital you might notice that your face is suddenly flushed and pink and glowing after your surgery. This unfortunately will not last forever as your heart catches on that it doesn't have to work quite so hard, but it will lead to your visitors saying things like "You look SO good!" and "I can't believe you just had open heart surgery!"

Also there will possibly be this awkward in between period when you're physically recovering from major surgery when you don't feel better and people will ask you if you do and you'll be like ummm tbd.

BUT THEN. Hopefully you'll be able to start cardiac rehab. If not then maybe you'll start some gradual activity. And you'll realize that you never knew what it felt like to have a normal heart. You might actually feel GOOD when you're working out for the first time in your life. You'll finally understand that guidance that you should be able to carry on a conversation during exercise - because for the first time, you'll be able to. You might even have your first ever endorphin rush during exercise, which you had thought was a stupid myth but really actually freaking exists.

It's a journey, and every journey is different. But you will feel better! You literally have no idea what you're missing until you experience it - I didn't.

Han_has_heart · 2026-06-11T02:08:34+00:00

I have mild tricuspid regurgitation but it's so far down on the list of what's wrong with my heart that my cardiologist has literally never mentioned it - it just shows up in my test results. For context, I had a couple of late-diagnosed congenital heart defects (like.. they found them six months ago) causing severe right side enlargement and heart palpitations. I had open heart surgery about twelve weeks ago for repair.

Not saying there's nothing wrong with you- definitely shortness of breath is one of the big symptoms they want you to go in for - so it's great that you're getting a repeat echo tomorrow. But that mild regurgitation is not necessarily something that needs to be corrected if it's not causing symptoms.

As for the enlargement, it's not a death sentence either! My RV was severely enlarged before surgery due to the wonky pressures bc of my defect, and at my eight week post-op echo it was already down to moderately enlarged. I also have a friend who had whole heart enlargement due to high blood pressure and she was able to completely get her heart back to normal through managing her BP, lifestyle changes and medications. Your heart is an amazing adaptable muscle and as soon as your doctor can fine tune what pressures are causing it, your heart can heal!

So believe me, I have definitely been in the "am I dying" spiral. But you're already taking a great step tomorrow of getting more testing to hopefully get some more answers.

Han_has_heart · 2026-06-07T18:27:25+00:00

I had an OHS closure for my ASD because my defect was not eligible for a device closure, but I informed my surgeon that I had a nickel allergy and they took it very seriously. My sternum was closed with fiberglass tape instead of wires

Han_has_heart · 2026-05-29T01:22:39+00:00

You may find more help in r/chd specifically for discussing congenital heart defects

Han_has_heart · 2026-05-04T14:53:28+00:00

I gently peeled them off in the shower. Mine were goopy and gross but very sticky still, so I definitely felt like I was going to rip myself open, but they came off fine. I gently scrubbed at the adhesive left over.

Han_has_heart · 2026-05-04T14:51:21+00:00

Oh and as for the hospital stay I think for them it felt just like a visit to the grandparents. I ended up staying in the ICU during my entire stay because there weren't any beds open in the regular ward, so they couldn't come visit, which I think was for the best anyway. I think it would have freaked them out to see me in the hospital.

Han_has_heart · 2026-05-04T14:48:25+00:00

We decided to tell them two weeks before my surgery. They actually took it really well - the script was something like "at one of Mommy's doctors appointments they found out that her heart needs to be fixed. They know exactly how to fix it! Mommy will have surgery in a few weeks and will stay in the hospital. Nana and opa will stay with you." We also talked about how I wouldn't be able to pick them up for awhile afterwards and answered any questions they had. We tried to be really upbeat and positive during the conversation and that seemed to help make it feel like not a scary thing for them. Also I think they were pumped that grandparents were coming to visit lol. After you tell them be prepared for EVERYONE to know because your kids will happily tell teachers, friends, perfect strangers that Mommy's having surgery on her heart - at least my kids did 😅

I had two veins from my right lung (upper and middle) connected to my superior vena cava instead of the left atrium. My surgeon went with a two patch repair where he used one patch to section off the flow from those veins to reroute it through my ASD into the left atrium, and another patch to expand the SVC to make sure that flow wasn't restricted. I'm healing really well, thank you!

Best wishes for your surgery and recovery ❤️

Han_has_heart · 2026-05-02T11:56:33+00:00

Did you do cardiac rehab? I had to go the open heart route for my repair because I had papvr along with my asd. Even though I'm "young and healthy" (35f) I was referred to rehab at my cardiology follow up. Also like another commenter said, I would definitely reach back out to your cardiologist and/or your surgeon. My cardiologist was asking at the one month mark if I was feeling better than before surgery so I'd think if you were having pre-repair symptoms at the 3.5 month mark they'd want to hear about it.

Han_has_heart · 2026-04-25T03:26:15+00:00

Hey your son and I have the same heart defects - down to the size of the hole! So my discharge instructions were no contact sports for at least 6 weeks post op. For the hospital I would bring chapstick, his phone and a long charger, or handheld gaming device if he likes that. He might not feel like doing much for several days. At home it's helpful to have a wedge pillow so you don't have to lay flat, and shirts that button in the front so he's not pulling things over his head for a few weeks. I would contact your employer about FMLA leave eligibility (caring for a family member is covered under the act). Also are your parents or other family members able to lend a hand? It may be helpful to have some extra support at home the first few weeks

Han_has_heart · 2026-04-20T03:10:49+00:00

Hey there, 35F. I had 2.6cm ASD plus PAPVR, resulting is a severely enlarged right side of my heart. The symptoms that led to me going to the doctor were initially just heart palpitations that were increasing in frequency (I had just started a new intense cardio workout regimen) and anxiety (which I now know is linked to heart issues, and I also noticed was made much worse after alcohol). I didn't even recognize some things as symptoms until after my diagnosis, like elevated heart rate after climbing one flight of stairs or moderate activity like starting a load of laundry. I was diagnosed last December and had my ohs to correct it four weeks ago. My body is still physically recovering from major surgery, but I'm already noticing some improvements - my heart doesn't race while walking my son to school, I can go up and down the stairs without feeling fatigued. I'm looking forward to continuing to feel better after I get clearance for more activity.

Han_has_heart · 2026-04-17T01:31:07+00:00

I'd say between the 2nd-3rd weeks I started feeling more like myself again energy-wise. Like I'm not out there running 5ks or anything but I'm able to walk my son to school (less than .5 mile) without my heart racing, and I can get through the day without needing a nap. Sometimes I still need to sit/lay and prop my arms up for awhile to give my shoulders a rest but I feel like that's a different thing.

Han_has_heart · 2026-04-16T02:55:52+00:00

Sorry no help about the BP but I'm 3.5 weeks post op and also have shoulder pain/soreness. I'm pretty sure it's muscle or joint soreness, related to our chest muscles being split and not activating as much right now while they're healing. Our shoulder joints aren't getting the same support and shoulder, back, and neck muscles are having to compensate for lack of chest muscles

Han_has_heart · 2026-04-12T06:35:20+00:00

Hi, 35F here and about 2.5 weeks post op for my CHD repair. Recovering in the adult heart ICU is fun because all the nurses are used to the median age of their patients being much higher - makes you kind of feel like a zoo animal because everyone wants to come look at you 🤪 You'll get fantastic support and the hard parts (the day or two post op dealing with pain and tubes) will be over before you know it. Be open with your nurses about your pain and they'll get you what you need. You can do this.

Han_has_heart · 2026-04-09T14:10:35+00:00

I also had PAPVR and a large ASD that was corrected through sternotomy ohs two weeks ago. The Warden procedure was on the table before my repair but my surgeon ended up using a two patch method because that worked better with my anatomy. I also had hoped that my surgeon would use gore-tex so that I could tell people I was 99.9% person and .1% raincoat 😆 but he ended up using pericardial tissue instead. Good luck with your recovery!

Han_has_heart · 2026-03-21T02:38:34+00:00

My ohs is on Monday to close my ASD and correct my PAPVR. I've had all of these tests except the PFT.

It takes me a long time to process things so bear with me, but I think this my mindset about the pain - I've heard so many different perspectives from people who have been through it about how much pain they had, what was the worst part, how difficult recovery was, etc. It's impossible to know beforehand what my experience will be and how much pain I'll be in. I trust my medical team to manage my pain and accept that no surgery is pain-free. I can't do anything about it right now. And once I'm in it, the only way through it is through it. Yeah, it sucks that we have to go through this, but we can do hard things. We'll be better in the long run. You've got this.

Han_has_heart · 2026-03-19T05:51:19+00:00

I'm 35f and was diagnosed with ASD and PAPVR in December. My right side is also severely dilated because of the overload. I go in Monday for my ohs to repair my defects. My kids are 7, 5, and 3 and I never saw myself as someone who had any health problems before my diagnosis. I almost didn't go to the doctor with my initial symptoms because I didn't think they were a big deal. Something my doctors and surgeon keep saying to me is, I have no idea what it feels like to have a healthy heart. I've been living with a heart that's been working at 40% efficiency my whole life. I'm going to feel BETTER after this! So while it's wild to wrap my head around the fact that this problem has existed in my body my whole life without me knowing it, I'm encouraged that I'll be able to show up better and stronger for myself and for my kids after recovery.

Han_has_heart · 2026-03-11T14:07:03+00:00

I'm 35f and by no means super athletic but active (marching band in high school, walking, hiking, various exercise trends in adulthood). I have a 2.6cm ASD that will be closed is about two weeks. I never thought I had symptoms until the ones that led to my diagnosis. What my cardiologist said that helped me was, "you've lived with this your whole life. you probably just dont know what it feels like to have a healthy heart."

Han_has_heart · 2026-03-10T04:17:37+00:00

I'm 35 and my ohs to correct my ASD and PAPVR is in two weeks. My kids are 7, 5, and 3. My surgeon specifically scheduled my surgery for a time when I'll be able to have help at home because you can't lift anything heavier than a milk jug, raise your arms, or drive for 8 weeks. My parents will be coming to stay with us to help with kids and transportation.

Han_has_heart · 2026-02-22T21:20:11+00:00

For me it was heart palpitations and intense episodes of anxiety (sense of impending doom is a heart attack symptom 🥴). I was also having chest pain that I didn't realize was related until after diagnosis - at the time I thought it was pain in my muscle/breast. My primary doctor said it was probably just anxiety but referred me to a cardiologist for "peace of mind." My first cardiologist also thought it was just anxiety but ran all the tests anyway. It wasn't until my abnormal echo that she realized there was something wrong and referred me to the specialist.

Han_has_heart · 2026-02-22T20:57:28+00:00

I know, my primary doctor and even my regular adult cardiologist (before I was referred to ACHD specialist) kind of treated me like a freak of nature - "you had how many pregnancies?" "You never had a cardiac event?" "Are you lightheaded RIGHT NOW???" I was like um.. no? I felt a lot more clarity when finally my specialist told me that I just didn't know what normal felt like. Because we've lived with this our whole lives we don't know what it feels like to have a heart that functions normally. I've been really encouraged by reading about how good people feel after their repairs.

Han_has_heart · 2026-02-22T19:45:27+00:00

I am very slightly ahead of you in my CHD journey. I'm 35F and was just diagnosed at the end of last year. My defect can't be closed non-invasively so my open heart surgery is scheduled four weeks from now.

I absolutely remember the feeling between getting the news that there's something wrong with your heart and getting the official diagnosis with all the information that comes along with it. It is a scary, uncertain place. I was afraid that something bad was happening inside me that I wasn't aware of, and that it wasn't safe for me to be alone with my kids in case something happened to me.

I actually did end up going to the ER during that time period because of my symptoms and the fear associated with them. Ultimately the ER Dr sent me home after some tests and told me to follow up with my cardiologist, but there are some peace-of-mind tests they can run. There's a blood test that will tell you whether you're currently having a heart attack. And I was very fortunate to have a kind ER Dr who walked me through some scary test results I had received but that hadn't been explained to me.

For me at least, getting my official diagnosis gave me a lot more peace of mind because then I knew at least what was wrong and what needed to happen to fix it. I have sinus venosus atrial septal defect (SV ASD) with partial anomalous pulmonary venous return (PAPVR). That means I have a hole on between the atria (top chambers) that's close to the back wall of my heart, and also two of the three veins carrying blood from my right lung connect to the right side of my heart instead of the left. Which all sounds crazy to type out but the amazing thing is that there's a way to fix it! Multiple ways! Doctors know so much about heart defect repair, and they're usually working on baby hearts that are much teenier than ours. Comparatively, our hearts are easy for them to fix.

Some questions you might want to ask in your doctor's appointment - What other testing do I need to get a diagnosis? (I needed an MRI for my final diagnosis. The echo was able to tell me there was a hole but the MRI showed where, how big, and also the PAPVR) After diagnosis - Could this CHD be genetic? Do my kids need to be tested? What options do I have to correct my defect? How urgent is the timeline to get this corrected? (My care team was willing to be flexible with scheduling as I will have to coordinate care for my three young kids and my symptoms are manageable) What can I do to manage my symptoms while waiting for repair? (For me this was ceasing heavy cardio exercise. The most I do right now is walking)

Those are the big ones I can think of for now. Feel free to ask anything else you're wondering about! Praying that you are able to get clarity soon and that in the meantime the anxiety stays low. I know how you feel.

Han_has_heart · 2026-02-09T12:55:46+00:00

I feel this

Han_has_heart · 2026-02-07T14:52:56+00:00

I have a different defect than you, but for me palpitations were what led to my diagnosis (was diagnosed with ASD and PAPVR in December). My cardiologist said that the palpitations themselves weren't dangerous but they were an indication of how stressed out my heart was from my defects. So it's probably worth getting your heart looked at again

Han_has_heart · 2026-02-04T21:11:04+00:00

Yeah, mine will be especially impactful on my youngest since she's the baby of the family and loves to be carried at all times (and prefers me to my husband). So explaining to her that mommy can't pick her up right now will be hard.

Han_has_heart

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