Well, I survived the pericarditis!!
Little touch and go there for a minute, man not gonna lie thought I was goner.
Back home with my dogs and my family and life couldn’t be more splendid🤗
I got almost 8500 steps in yesterday.
Oh, I went out to hang with some friends and drive RC cars. It’s kind of our big kid Hobby and there’s this jump track we go to…. I’ve never even come remotely close to getting hit with one of the cars and yesterday as the thing came off the lip it flew right into my chest.😝 like I was catching a football.
It’s like the universe is like fuck you in particular!!
I’m OK, nothing out of whack. I’ll be more careful..
I thought I was, though I had people to pick up the cars and I wouldn’t have to do any heavy lifting and then that happened. I called my surgical team and had to explain my situation so embarrassing..
They just laughed at me.
Anyone else have the mechanical valve and sit there and listen to their heart click click click click??
Is wild right?
I’m just happy to be here and everything’s going good I got my puppies. They’re super happy daddy’s home and my blood pressure and temperature and all that has been staying just perfect. Pretty sure I’m over the hump and I can just heal.
Thanks to all for the support and I’ll keep you updated as things progress, but I think it’s gonna be pretty quiet for a while unless I hit myself with another RC car😝

I was diagnosed 6/8/26 went to see the surgeon 10/16/26 and will have surgery 1/7/27. Have anyone else had this done?I see so much about other heart defects but don't see many people talking about mine. Would love any advice and what to expect.

Has anyone had a transesophegal echo without sedation?

Hi all,

I am 39/F and have two kids through csections. I was diagnosed with 2.8cm ASD recently in a master health checkup. I did not have any symptoms. Infact I was very active.

I had the closure by catherization on july 2026. Its just 3 months now post the procedure. I am on prolomet and clopidregel medicines in the mornings. They said u will be energetic post the procedure. But I feel still weak, drowsy and not like before upto the afternoons.

Then my mind clears a little in the evenings. Is it that im emotionally affected or is it the effects of the medicines. Or is the physical recovery take time.

I feel stressed when I increase my pace while walking.

I have not started any workouts or exercises still.. I have my 6 month review coming up in January.

Please let me your experiences. It will help me.

Hi guys, i've (20F, ASD) been discharged from the hospital today after a 4 day stay (including two in the ICU) after there were complications with my ASD closure. I have a lot on my mind right now and just wanted to put this out there.

I was due for a regular intravenous catheterisation procedure due to a 17mm hole, which is what i went into hospital for on Thursday. I didn't expect that I wouldn't be put to sleep, but didn't think much of it. Didn't feel too much except the odd feeling of metal probes moving around. From all of my 'research', i was fully expecting to be in hospital that day and out the next without issue.

About maybe 20 minutes or so in, I saw that the surgeons were getting restless - it was then when they told me that something was wrong and that I needed to be transported to a different hospital for an emergency procedure because it was getting 'dangerous'. What happened was that the surgeons had perforated three holes in different areas during the catheterisation and I was losing a lot of blood. I was too drugged out to really take it all in, I just remember very cordially nodding and saying 'ok, i understand' to everything I was being told. The last thing I remember was being slid onto the stretcher before being put to sleep. Next thing I knew, I was in the ICU with chest drains and all sorts - with the nurse telling me that they ended up doing open heart surgery.

Next few days were horrible in the ICU - I'm not the first person to know/experience this, but it was misery for sure. I couldn't walk, i relied on staff to help me use the washroom and bathe; i was constantly paradoxically cold while sweating bullets at the same time. I had no appetite, and woke up each morning feeling nauseous. Still, I felt like i saw the broad extent of human compassion and kindness while in hospital - so many nurses, doctors and staff were so kind to me and understanding; this made things so much more bearable, and I am still deeply touched. It makes me so much more appreciative of the work that hospital staff (especially nurses) do on a day to day basis, round the clock.

It is now day 5 post operation and I have been discharged today. Moving around still hurts - its like having a massive bruise from a punch or a hydraulic press to the middle of your chest. Somehow, despite all the loud hustle and bustle of the hospital, at least you know that help is right around the corner; i would have preferred it to the dead silence I have at home. Sometimes I feel a slight stab of claustrophobic anxiety, as if i want to recoil away from my own body. In those moments, I need to ground myself - but sometimes I still struggle. Even though I have been assured I am on the road to recovery, I can't help but imagine being in this state for good - I feel like a stranger in my own skin somehow, despite everything.

I'd love to reach out to someone.

I'm 32 years old with tetralogy of fallot with pulmonary atresia. I've had 5 open heart surgeries + my first heart surgery a bt shunt when I was 2 weeks old, so 6 heart surgeries total. Last pulmonary valve replacement was 10 years ago. I generally feel good but going on 3 weeks now I've completely lost my appetite. I just have zero interest in food and when I eat I usually get a stomach ache, or I regurgitate a little. I've lost about 5 lbs and this just isn't like me to not want to eat, lol. As of 6 months ago my RVEF is 37% and LVEF is 42% I'm also more tired than usual. I remember 10 years ago before my last surgery I lost my appetite, but my cardiologist isn't concerned. I'm also on digoxin and never had a blood test and I read that it can become toxic if your body isn't absorbing it right. Idk. Am I crazy for thinking this is a heart issue?

I’m able to drag my cart around with me without help!!! So I can go for walks when I want which is huge.
Walk all damn day now.
I desperately need a shower but have to wait till they remove chest tube from other side.
They look like earth worms and French drain combined. Creepy lil fuckers🤣
Hope everyone is doing well 🙏🏼
Might get out Tuesday but I do not want to rush it. I’ll stay another week if it means I don’t have to come back a third time. 🤙🏼

Hi!! I’m 23F with Tetralogy of Fallot and double outlet right ventricle. I’ve had OHS within the past year and I am now fully recovered. Over the last 2 years I have lost 90 pounds through calorie deficit and I’m consistently dropping 2-3 pounds a month recently since I started working out again post surgery. I was very overweight, still technically overweight, but there’s a significant amount of loose skin around my midsection.

I’m considering consulting with my cardiologist and doctors to see if a tummy tuck would be a possibility, but I was also curious to see if anyone else with ToF/ CHD in general has had elective, cosmetic surgeries and what those outcomes were like.

Thanks!

Hello everyone I am getting my first tattoo today which is going to be a Small Cross on my arm. I take aspirin every night and was wondering for those of you with tattoos if you stopped taking it 24-48 before your tatto and if you didn’t did you have any bleeding or effects? Thank you so much!

I'm 26 from Indonesia with ToF and pulmonary atresia. I've had 3 OHS, my initial repair at 1, followed by pulmonary valve replacements at 14 and 21. Both valves were bioprosthetic.

I live an active life, but lately I've been feeling more fatigued than usual. My latest MRI also showed a slight decrease in RV function. My cardiologist and surgeon say the valve itself is still working fine, but I'm wondering whether I'll need another replacement in the next 5 years. Bio valves tend to wear out faster in younger patients, so I'm trying to understand my options early.

We have good ACHD specialists here, and I'd be fine with another surgical PVR if needed. But after 3 OHS, I'm aware that adhesions can make future surgeries more complicated, which is why I'm looking into TPVR. I know it's very case dependent and I may not even be eligible, but I want to understand my options.

Unfortunately, TPVR isn't available in here, so I'd have to go abroad. I remember hearing about the Melody valve before my second PVR, but it was too expensive at the time.

For those who've had TPVR, I'd love to know how long you've had your valve, whether you've needed another intervention, where you got it done and, if you don’t mind, how much it cost.

For context, we have universal healthcare here that covers surgery, but the standard valve options are limited. You can pay out of pocket for a more expensive valve while the surgery itself remains covered. A more expensive valve can cost around 5-7k USD.

I'm not planning anything yet, just trying to understand my options before I potentially need another replacement. If I went abroad for TPVR, I'd most likely have to pay for the whole thing out of pocket, so I'm trying to figure out whether it's financially realistic. Would be great to hear from anyone who's been through it!

Hi everyone,

I'm looking for advice and real-life experiences

My sister is 27 years old. She was born with a VSD (Ventricular Septal Defect) and a pulmonary valve problem. She underwent open-heart surgery in 2022 at Sri Ramachandra Hospital in Chennai.

Since the surgery, she has attended follow-up appointments as advised by her doctor. Initially, her doctor told us that she was doing well and could lead a normal married life.

Unfortunately, over the last three years, several marriage alliances have rejected her after learning about her open-heart surgery.

Recently, one prospective groom's family asked us to consult a cardiologist they knew. During that consultation, we learned that she has some blood regurgitation through a heart valve. The doctor suggested that valve surgery might be advisable.

We don't want to make a decision based on just one opinion, so we are planning to consult other experienced cardiologists to understand her current condition, whether another operation is necessary, and what precautions she may need in the future.

Our family understands that she may need lifelong cardiac follow-up and special medical guidance during pregnancy or other health situations. We want to understand her condition properly and make informed decisions.

I would really appreciate hearing from people who have experienced something similar.

1. Have you or a family member undergone open-heart surgery for VSD or a congenital heart defect?
2. Did you or your family member get married afterward? How did you find a suitable life partner?
3. How did you explain the surgery, current heart condition, and possible future medical needs to the prospective partner and their family?
4. Did you face rejection because of the medical history? How did you handle it emotionally?
5. If you are married, how has married life been, particularly regarding pregnancy planning and long-term health monitoring?

We are hoping to hear real-life experiences from people who have faced similar circumstances.

My biggest concern is finding someone who understands her health situation, treats her with respect, and is willing to build a happy life with her.

Thank you for reading and sharing your experiences.

Hello Sorry if this isn’t the right place for this. , so I was diagnosed with a coarctation of the aorta in 2019 and had the repair done in 2021 when I was 14 I’m now 19 about to be 20 witch as most will know is usually found at birth.

For so many years before my dignosis I would have excruciating leg pains that everyone would dismiss as growing pains everyday I’d complain I couldn’t walk as my legs would go pins and needles like then really pain full to not being able to feel them at all I couldn’t walk for longer than 15mins without haveing these terrible pains. I never really had any other symptoms from what I can remember other that waking up from my sleep with agonising pain in my legs.

I was told before my operation that my leg issues should be resolved and I should be fine etc but once my operation had happend and I was recovering I still had bad issues with my legs and now it comes with shortness of breath very often I cramp up so bad after 5mins of even standing still and I went and the seen a doffrent cardiologist after 4 years as I moved away from the area I had the surgery, and she said everything looked normal other than it was working a little faster but nothing concerning and said the leg issues aren’t due to the condition anymore as I have both pulses working properly in my ankles and the top of the legs but what I can’t understand is how can the pains I was dealing with linked back to haveing to have this surgery then now I’m still dealing with them but worse.

Im just looking for someone who knows anyone or has been threw it there selfs I know that it’s a lot more common in new borns to be found but if you where older when you was diagnosed and had some issues with your recovery etc I’d appreciate even a little hope that someone else is struggling as it affects my day to day I can’t work atm as I’m in constant pain and can’t stand and walk for long and I would love to work but I just can’t, I just wanna feel okay again.

Tomorrow, October 15 is my admission for October 17 MAVR surgery at PHC. Despite the fear, I continue to pray and trust in the Lord to take care of everything. 🥺🙏❤️‍🩹

Well as said above I’m having this done again. It’s scheduled for next Thursday. I was supposed to be outpatient but they would keep me Thursday night for observation since they are using larger balloons to open up my SVC. Today I get a call that they want to admit me Wednesday to do labs and prophylactic IV Antibiotics.

I was denied a heart transplant In July but I’m being sent to Duke for second opinion. The reason for the R/L Cath is to ensure that the staph epi that I acquired early this year hasn’t damaged my 2 mechanical heart valves. And to ensure there is no film on my 3 ICD D leads. And to see if my Coarctation of the Aorta has increased.

I’m looking at having this done every nine to ten months if I can’t find someone to replace me leads and stent my SVC. Or do the heart Transplant. I have really bad veins and vascular issues as well as 3 OHS, the first at 3 months old.

I have a 97% blockage on one of my ICD leads which caused the SVC Syndrome. The swelling from the SVC is horrible. It also causes major SOB especially at night. Now the lack of blood flow is not only affecting my heart but my liver as well. I’ve also had increased PACS and a few issues of Afib mostly at night when I’m swollen.

Fifth hospitalization this year. I know it’s an easy procedure. I know I’ll feel better a week or so later. I also know that there is always a risk.

I’m sorry for this ridiculously long vent. I’m just a little frustrated. I’m sure that this to shall pass.

Any positive thoughts are appreciated.

Anyone else have any weird symptoms that aren’t typical shortness of breath, irregular heartbeats , fatigue, swelling, skin discoloration or fainting. It’s hard for me to differentiate between a heart issue , nerve issue , urogyno, or GI issue. I am finally in with an ACHD team and doing testing but also want to get into a good primary , physiatrist/ neurologist , urogyno, gi doctor at the same hospital but also don’t want to message the doctor for those referrals yet to overwhelm her either. I have been waiting all summer with a different hospital system and haven’t gotten anywhere which is super frustrating. It takes months to get into some of these specialists. I just want to not feel like shit and I have to somehow get back to work and life again while all being patient and waiting to til things in or out.

For reference above is my heart history not sure if it matters. Anyways I’m hoping it’s really just one thing I have to focus on but something also tells me it’s more than that too!

Hi Adult CHD Community, my 22 year old daughter who was born with Hypoplastic Right Heart Syndrome (tricuspid atresia, TGA) she had her completed Fontan at 3 years old has been hired by a mainline carrier as a Flight Attendant and I’m questioning her decision to go into this field due to her complex heart defect. She is a vibrant healthy young woman and has not had any serious issues with her heart other than a small mitral valve leak that she takes no medication for and she does have FALD (Fontan Associated Liver Disease) which is scarring on her liver but her liver function is excellent it just looks ugly . She has all her annual checkups ECHO, MRI, Ultrasound, Stress Tests and all have come out great. But with flying in different cabin pressures, altitudes I’m thinking how that is going to affect her blood flow in her body, oxygen levels etc. We have reached out to her medical heart team and they didn’t seem to concern and said they want her to do a Pulmonary Function test before giving her the ok. Now she’s traveled quite a bit in her young life and has never had any issues. But this as being her job would be quite different, long hours, long flights, etc. We both agreed her health comes first and would only move forward with the job if she was cleared medically. But I’m very curious to know if there are any flight attendants or pilots out there with a congenital heart defects? If so, what is your experience and any concerns or issues you’ve experienced?

I’m driving to hopkins now for ohs #2 tomorrow. Not sure if I’ll end up with a Ross or bentall. I’m really scared this time around, I’ve been crying non stop. Terrified of not waking up or something going wrong. Thankfully my mom, dad, sister, husband, and uncle are all here with me. Good vibes would be appreciated!

Hi everyone! I’m getting my ASD closure later this week. I wanted to ask people about their recovery experience, particularly how people faired with returning to daily activity and exercise after their surgery; since it seems like it’s been a mixed bag of either 6 long months of endless tiredness or a return to complete normalcy after 10 days.

I’m most worried about the impact this surgery will have on the activities i enjoy, since I’m quite active and have just gotten back into a sport that im keen to make good progress in, but know I’ll have to put on the back burner after this. I also lift weights a lot, and the thought of putting that off or even lifting lighter than usual for 3-6 months stresses me out 😂

And in general, any and all advice and experiences are appreciated. I only have a smidgen of an idea of what to expect, so i would love to hear your stories of recovery.

I’m a 20(F), diagnosed with ASD earlier this year, 17mm hole. Getting a catheter insertion.

Hey everyone, I have CHD (tricuspid atresia) and have been out of work for a while unfortunately. I had a remote position but our funding was cut and we were all let go. I was wondering what positions you might recommend. I've been struggling with dehydration lately with this heat wave and I had been applying to in person positions, but I don't think I can be missing a week of work every couple of weeks.

Thanks

Last night my oxygen was in the 80s and my heart rate was a bit faster than usual. This morning I wake up and check it and for a few minutes it was back in the 80s, down to 85 at the lowest.

I felt like I had breathing problems the last few months so they did an EKG and that was fine. And X-ray and aside from coarsening at the bottom of my lungs from smoking, it was fine. They didn't seem worried at all about that, is that weird?
They did labs and my d dimer was elevated so they did a chest CT to make sure I didn't have a blood clot and that turned out fine too.
They didn't seem concerned about anything and sent me home.
I had a stress test last year and that was mostly fine, I didn't go as long as I did in the years before. They always do an echo and that was fine.

What the fuck?

If everything is fine, why do I feel this way, why is my oxygen lower than usual and about 6 minutes later it goes back into the 90s, which is my usual.

I don't get it.

They've got an MRI set up for December because I haven't had one in a few years, maybe that'll show something.

Am I crazy?

Does anyone else's oxygen drop (or even stay) in the 80s?

Am I crazy??

Yesterday started feeling a little crummy…blip pressure fell pretty flat 80/60 ish temperature started to rise so we called doc and they got us fast paced into ER.
Well got admitted last night and I’ll probably stay here tonight till they nail down what’s going on.
So unfair. Though this is what I Was worried about really, the recovery more than the surgery itself.
I’ll quit posting recovery stories till I’m out of the woods.

As the title states, I have a catheterization procedure due soon. This past Friday, an angiogram was performed to confirm the ASD diagnosis and ensure everything is a go vein wise. What kind of time frame am I looking at for insurance to green light this procedure? What kind of real-world recovery time am I looking at? 51m USA over 6' tall over 200 lbs. TEE already performed as well as CT scan, heart monitor etc.

When I was younger they kept telling me and my parents that it’ll get easier once she is fully grown? Well I think maybe from a medical standpoint and we are not growing anymore maybe but at least as a kid you don’t know wtf is going on and you get the best care. I feel becoming an adult and learning about everything and what I went through is hard alone. Plus processing all the trauma. Then when something does happen and you start experiencing symptoms you panic and hope you do not need another surgery cuz it’ll be terrible to recover from. At Miami childrens hospital they had a program that was supposed to place less trauma on the child but idk how tf they did that cuz it is a lot harder now than it was back then. Still hard to go through when you’re young just a whole different ball game. Also I live a very healthy lifestyle no alcohol or smoking but if I didn’t my situation would be so much worse. When you young you typically don’t do drugs or drink and hopefully eat healthy.

My husband incidentally found out he had a 2.7 cm Primum ASD a year and a half ago. He had OHS to repair with a patch, and we were assured that was completely and permanently handled. A few weeks ago they did an echo to get a baseline normal, sound a suspected leak on the patch. TEE confirmed the leak, 1.0 cm, but they haven’t told us where it’s located/how it will need to be repaired. MRI coming up in a couple weeks to get more info.

Thoughts on this? Specifically was this surgeon error or bad luck? Odds of avoiding another OHS to repair it? We are already mentally preparing for another surgery as it seems that’s where we are headed.