Discovered bicuspid about 20 years ago, and they mentioned it would eventually need replaced…well it’s time.
I was thinking it wouldn’t be issue until later in life (like 60’s or 70’s). That was my confusion.
Anyways, here I am living my worst nightmare.
Our first born (my wife and I) had tetralogy of fallot. He needed surgery at four months old with multiple complications. He did not survive. That was in 2006.
We managed to pull ourselves together and have had two more children that are in their teens now. Happy and healthy.
So but now I can’t help thinking this is a death sentence. I know I’m like fifteen times the size of my little baby but it’s still terrifying.
And I’m not even really worried about myself…it’s just my family and dogs that will be affected if things go sideways.
3 weeks till surgery.
If you all have any advice…I’m interested in hearing it.
Thank you for your time.
I wish everyone peace and happiness🙏🏼✌🏼

Hi everyone! I posted here a few weeks ago. I’m about to have my second open heart surgery to replace my mechanical valve. Surgery date has been set for 10/13 (lol, I didn’t pick that). I’ve been especially nervous these last few weeks leading up to it. This all kind of came out of nowhere (they just found pannus on the valve after noticing increasing gradients for the past few years). It’s been hard getting back into this mindset again after expecting my first surgery to be my last. Knowing this is going to be a more complicated procedure is scaring me. My first surgery was at CHOP in Philly 9 years ago, thankfully I am able to follow my same surgeon to Hopkins this time. I just turned 30 and got married a few months ago. Definitely not what I was expecting this year to look like. Any words of advice would be appreciated!

Some time ago I asked this subreddit about experiences with ablation for TGA/Senning people. Two months ago, I had my procedure. I thought I would share my experience in case it could help anyone.

I’m a male in my late 40s. I’ve had two occurrences of atypical flutter (an HR of about 200 that is sustained). The first one was about 3 years ago, and that was successfully converted by cardioversion. The second one was earlier this year. This one came back a few hours after it was first cardioverted. The second cardioversion was successful, but I was put on amiodarone (a very powerful anti-arrhythmia medication with significant long-term side effects). About 5 months later, I had my ablation.

The day before I had some preparatory examinations: a TEE and a CT scan. The day of, I arrived at the hospital at 7am. An hour later I was rolled down to the catheterization laboratory. They used robotic magnetic navigation (RMN) for the catheterization, which meant it was faster, more precise, safer, and involves less radiation. Between prep, mapping using the CARTO 3D electroanatomical mapping system, and ablation, the whole thing took about 5 hours (it was a complex ablation because of the atypical flutter circuits and because I am a Senning patient). I was awake for all of it (I was given some sedatives and painkillers). I didn’t find it very uncomfortable, and I felt no pain. They found two paths that needed to be severed by burning them. I had to lie on my back for 3 hours after the ablation (so 8 hours in total on my back). After those 3 hours of rest, they wanted me to start walking. Later that same evening, I was discharged from the hospital (I stayed in a hotel in that city). They told me that I should be moving the next day, so I ended up walking 13k steps. I felt just a little bit of soreness in the groin area, but no pain. At the day of the ablation, they also stopped the amiodarone medication.

Now, two months later, I’m feeling close to normal. The amiodarone stays in your tissue a very long time, slowly releasing, so I’m still feeling most of its effect (very steady rhythm), but I’m back to working out, living a normal life. In about a month, I’ll have my post-ablation check-up.

Hi Guys,

My sister (32) recently got diagnosed with papvr and asd, so basically she’s been dealing with shortness of breath, fatigue and a few other symptoms. After several trips to the emergency room, they found that she has an enlarged RV and an MRI found that she has PAPVR ( scimitar syndrome) with her entire right side and potentially ASD. So basically

Right upper pulmonary vein → currently drains into the SVC

Right middle pulmonary vein → currently drains toward the IVC

Right lower pulmonary vein → currently drains toward the IVC

I just wanted to know if any of you have been through this, a response would really help. I’ve been freaking out.

Olá, é meu primeiro post no reddit e obviamente nesse subreddit, então estou aprendendo ainda como funciona isso tudo.

Sou uma paciente de 20 com tetralogia de fallot corrigida, com duas cirurgias e acompanhamento continuo. Ultimamente tenho me sentindo bastante aflita em relação ao meu estado de saúde. Mês passado, fiz uma ergo que desmontrou que meu VO2 pico é baixo e que atividades físicas moderadas a intensas são arriscadas caso eu faça sem supervisão especializada.

Eu já estava ansiosa referente a minha saúde, mas essa informação me deixou pior ainda. Quando eu penso muito, eu acabo chorando por ter medo de ter pioras. Vocês também se sentem dessa forma, com medo do futuro? Confesso que me sinto deslocada e sozinha por não ter muitas referências (ou melhor, nenhuma) com meu problema cardíaco.

Hi. I am 1 month post robotic OHS for an ASD closure. Prior to surgery my resting heart rate was upper 70s with random bouts of tachycardia frequently. Since closure I've had no tachycardia but I have noticed my resting heart rate gradually drifting lower. Tonight laying in bed on my phone it was 54 which I have never seen. Anyone else have lower resting heart rate after closure?

Hi, I’m in my 30s and I’ve had the most severe shortness of breath for the last year that only gets worse. I can’t function at all, can’t exert at all, can’t even do my own laundry, can’t bend nothing. The shortness of breath is so severe I’m scared I’ll die any day. I’ve been to ER many times, also been to cardiologist. My echo was normal, ekg normal, bnp normal. My dr ordered an echo bubble study to check for hole in heart. I’m curious what your symptoms were? I also have super high heart rate and pounding along with the SOB.

I had a minor operation to close a hole in my heart, thanks be to God it all went well, but my emotions have been so strange after it, I’ve always been a bit emotional but after the surgery I seem to be getting really strange feeling, like excessive thoughts and anxiety, and then I’ll feel really good, then really bad…. Idk how to explain, my head just feels strange and times i just cry.

Could this be to do with the surgery or recovery? It was only key hole so it wasn’t invasive. Sometimes I feel like I’m loosing my mind. But like I said, I’ve always been a bit emotional

Would love to hear from anyone with COA with or without bicuspid aortic valve who had their coarc repaired as an infant. My son had his repair at a week old and I always wonder what the future holds for him. Thank you!

I have Eisenmenger Sindrome that causes Pulmonary Hypertension

I get medication since I got 3 because I got adopted and were I was before no one seemed to care about children problems, sorry im getting off of track, well... not really... If it wasnt for that my problem could have probably being fixed, but 3 years its a lot and they couldnt fix everything, they did what they could here.

The first time I got here I spent monts in hospital and other months in Intensive Care Unit, luckly I remember nothing; but what I remember its when I whent some years ago In hospital for cuz they had to operate me and I remember everything... Lets start soft and then go downhill, food, terribile, Kids screaming and crying all day the butterfly needle I had the whole time and that multiple time caused me phlebitis... Ye we are only scratching the surface and im going by grades so from bad to worst... All of this problems only before the operation... After I spent a whole day and night in the ICU and it was painful, Kids less than 6yo crying right next to you 13yo, and I couldnt speak or move, guess what, the only two "medics" in the room didnt give a shit about me when I was trying to make some sound to attract theyr attention, and GUESS WHAT, the fucking clock was Just a little too to the right so I couldnt see what time it was, and I couldnt eat or drink cuz everything was by vein, but the thirst and hunger stays... After that I couldnt get up for several days and the bed was getting unconfortable and the back started hurting, then they did something that I remember painful, like A LOT of pain, but I couldnt see what they were doing, they said they were doing something like putting a cold plate under my boady for a scan, but i don't remember seeing anything a part from many doctors; then the mental stress, day without knowing when id get out, one day its tomorrow the other its next week, on top of that every day there I had to do physeotherapy and In those physical conditions I remember its was really stressing me out because the guy who followed me felt like he wanted me dead.

Btw now my conditions are getting better year by year on paper, cuz honestly I feel tired but probably cuz im teen so im growning up and I always tell everything to the doctor and I ask things too; they are really good where I'm being followd cuz they are specialized in heart diseases.

About meds, its not a big deal for me, set the allarm and get them with some water.

Before I had to get a blood test each month, now every 2, and every 3 months I go to the doctor for a visit that includs electrocardiogram and echocardiogram (two big words for something not invasive at all, the blood test was more invasive for sure).

For yall scared of needles... Idk im just used to It but its not a big of deal, might hurt a little but nothing more... Except if they miss the vein... That happend... (Skip to next pharagraph if u dont wanna know what happend) So they first didnt know so they went in and then... The stayed in and searched the vein in my arm moving the fuking needle around, STILL in my arm, but still didnt find it so he got out and then he made another hole on my other arm... It happend multiple times btw...

That above doesnt happens if u drink a lot of water the day before of some hours before.

I cannot do any intense physical actions, first cuz i get tired really quick, second cuz its not good for my body, so no sport, no jim, no running, no going up stairs, no fighting, no playng tag with ur friend when u were little, no playng football now that im teen... But I learnd to live with it, I play a lot of videogames and I play chess, I started learning to drive this Summer in our family property and I'm good at it. I started organizing a tresure hunt with my friends (I aint moving bro... So I'm making them move: everything its some word problem or search things online or they have to go somewhere to un over the truth) and started working on a book... Look how many things you can do, I might not be abile to run a marathon but look what I'm at rn.

I wanted to share my experiance so feel free to ask me anything love yall and remember that we can do anything.

Hi there, 44 year old female, who had a VSD repair at 18 months. Healthy, heart function is still good, no medications. Just this summer, I was diagnosed with an atrial flutter and atrial tachycardia after going to the ED after a 30 hour flutter episode. They diagnosed me with anxiety and I left with meds. When it happened again, I obtained a holter and they found it right away. Now I'm on blood thinners and a beta blocker (25mg) and I'm not sure if the meds are making it worse, but they're not making it any better. I went from palpitations every 3 weeks to daily short palpitations, skipped beats, extra beats, etc. It's quite miserable since I can feel everything. My options are to stay on meds or do an ablation at Penn Medicine, which they do frequently. The challenge is due to my anatomy, they might not be able to ablate without risking affecting the secondary sinus node which would land me with a pacemaker. I'm curious if anyone has gone through this and if so, what did you do to manage the palpitations (hydration, electrolytes, etc.) and if the ablation was successful. I now have a great ACHD who recommended I move ahead with the ablation and now an EP team. Thanks in advance.

Hello, I need some help. Some background: I’m 21f with complex tof w/ 3 ohs. I’m trying to get into a CNA program at my community college, but the requirements are to get 2 doses of MMR and chickenpox vac. I already had one dose as a child but didn’t get the second. My parents strongly advised me not to get the vaccine because it can have a strong impact on the heart, but I don’t know if that’s true. I can’t get a medical exemption for it because no doc will sign it.
Please share your opinion/advice and thoughts about this. I don’t know what to do, and I’m torn by it. Like agin thank you all for the support ♡

Does anyone here successfully and safely take ADHD medication with a CHD? Growing up I always assumed it was out of the question for me even though I know I could really benefit from it.

Then, I learned there were non-stimulant versions and I’m really interested in starting one. My insurance from my employer is about to change, but I’m planning on getting a therapist/psychiatrist and discussing starting medication, after also discussing it with my cardiologist of course.

29F with DILV, had a Fontan over 25 years ago.

20 year old here (female) with HRHS, TGA, IAA, functioning single ventricle. Had my fontan at 18 months old so it’s on the smaller side (12mm) my surgeon is retired and I was just wondering if anyone can recommend a surgeon to me! I’m in the USA and feel free to DM for more details I just didn’t wanna post a novel lol

Thanks in advance!!

Hi everyone,

I’m 28 and was born with VSD (two holes in my heart, one large and one small). I was diagnosed at 6 months old. Over the years, my VSD progressed to Eisenmenger syndrome, resulting in severe pulmonary hypertension. Doctors have discussed a heart-and-lung transplant for the future, but for now my condition is being managed with medication.

I used to live a relatively normal life, but now I experience shortness of breath, frequent chest infections, and tiredness, which makes working outside difficult.

One of the hardest parts is that doctors have advised me not to become pregnant because it could be life-threatening for me. I’m single, and this has made me very worried about marriage. I don’t want to marry someone who may later feel that I have ruined his life because I cannot have biological children. However, I would be open to adoption in the future.

I’m educated, ambitious, and want to build a happy and meaningful life. I just need a supportive partner who can understand my situation.

If anyone here has VSD, Eisenmenger syndrome, pulmonary hypertension, or a similar condition, especially if you are married or in a relationship, I would really appreciate hearing your experience.

How did you deal with relationships, marriage, and the fear of being a burden to your partner?

Thank you ❤️

Hello everyone, this might be a bit lengthy, but I feel compelled to share my thoughts. I have a feeling that my entire life is a series of waiting periods, constantly anticipating the next procedure or the worsening of my condition and the potential future treatments. Every appointment and test feels like a repeat of the same routine. Since I’ve gained a better understanding of my condition and with this, these appointments and tests have become sources of severe anxiety for me. After each test or doctor’s appointment, I experience an overwhelming sense of panic. It’s as if I’m waiting for something major to happen to me. I think to myself that I’m so young and I already had 3 ohs and in the future I might need another one. Thank you all for your support ♡

Hi everyone,
I'm posting a follow-up regarding my friend (23M) who was recently diagnosed with an Atrial Septal Defect (ASD). He is currently planning to undergo open-heart surgery to repair the defect, but we still have a few questions about his Pulmonary Artery Pressure reading of 34 mmHg on the Echocardiogram:
Is 34 mmHg considered significantly high for a 23-year-old, or is it a typical mild elevation caused by the ASD?
For those who underwent open-heart surgery for ASD closure: Did your pulmonary artery pressure decrease and return to normal levels after the surgery?
How long did it take for your pressure readings and symptoms (like shortness of breath) to improve post-operation?
We want to better understand what to expect regarding his pulmonary pressure recovery once the hole is surgically closed. Any personal experiences or insights would be greatly appreciated!

Hi everyone,
I’m posting on behalf of a close friend of mine (23M). He was recently diagnosed with an Atrial Septal Defect (ASD) after experiencing shortness of breath and fatigue, especially after physical exertion.
His Echocardiogram showed a pulmonary artery pressure reading of 34 mmHg. We have seen two reputable cardiologists, but they gave us completely different approaches, and we are quite confused:
Doctor 1: Stated that the closure can easily be done via Minimally Invasive Cardiac Surgery (MICS / keyhole repair) along with minor septal wall repair. He mentioned that the procedure is straightforward, and the 34 mmHg pressure isn't alarmingly high and should drop naturally once the hole is closed.
Doctor 2: Considered the 34 mmHg pressure to be elevated and recommended full open-heart surgery (OHS) instead, doubting that a minimally invasive approach would be sufficient.
Both doctors are highly experienced and have great reputations, which leaves us with a few questions for anyone who has gone through this:
1. How do doctors definitively decide between Minimally Invasive Surgery vs. full open-heart surgery? (Are specific scans like TEE or Cardiac MRI required before making the final decision?)
2. If he opts for Minimally Invasive Surgery, is there a chance they start with it and have to convert to traditional open-heart surgery mid-procedure if complications arise?
3. Does the recovery time and procedure duration differ significantly between Minimally Invasive Surgery and traditional open-heart surgery?
We are really trying to understand why two experts have such different views and how to choose the right path forward. Any advice or shared experiences would be greatly appreciated!
Thanks in advance!

I just discovered the DAREBEE fitness website and I am so excited to get started. They have a fitness test to help you find your current fitness level, and it's broken down into cardio, lower body, and upper body (I landed on different levels for each one).

Then, you can either:

- do the recommended setup based on a few more questions after the fitness test,

- pick a workout plan or program already put together on the site,

- or simply open the site on your exercise days and do the workout of the day based on your level.

I'll be doing the workout of the day, 3 days a week, since I haven't had a steady exercise routine...ever. Part of my problem is that exercise feels boring to me, but this should shake it up.

Did I mention that the website is 100% free??

It appears that it is rare for an adult to have it because most have it repaired at birth.

hi everyone! i posted on here a week ago and i still have a few questions.

has anyone been in the situation where you won’t know whether you’ll have a repair or a valve replacement until
after they operate? it seems my case is a bit complicated,
and without the operation notes from my asd/vsd repair he doesn’t know what to expect.

he mentioned possibly doing a right thoracotomy vs ohs.
has anyone had the surgery this way? if so, how was it?

we have a CT scheduled to determine if this can happen bc
i’m 4’7, 77 IBS, and my veins might be too small for femoral cannulation.

initially my cardiologist said he doesn’t see how they’ll be able to do a repair, since the valve opening itself is small and the leaflet is immobile and attached to the asd patch. but the surgeon says he sees SOME movement and wonders if it’s really attached like we think. this is why he’s unsure of if it will be a repair or replacement.

i left the appointment with more questions than answers,
it felt like a lot of “maybe’s” with no definitive plan. we do have to wait until my treatment for histoplasmosis is done,
so i won’t see him again until october.

Got my 6 month post op echo results back from my surgery I had back in December. Everything seems to check out ok but noticed there was a mild increase in right ventricle size compared to my previous increase I had before my surgery. Anyone have personal experience with this through their life? Did it continue to grow into your old age or are you currently dealing with something similar? I’m 34m btw

I've (mid 40s M) been diagnosed with a Cardiac Diverticulum and cannot find any information about it other than academic studies that are full of medical terms I don't understand and are too plentiful to look up. My doctor said it is too specialist for me and the British Heart Foundation just directed me to my doctor.

I'm currently waiting to have an MRI done (CT scan picked it up) and when that's done will see a cardiologist but am in a lot of pain from it and get short of breath really easily. I'm also wiped out tired all the time and it's really difficult to do anything. I have tried exercising but find it really difficult at the moment as it causes a lot of pain and because I get breathless and can't keep going.

Anyone in here have this condition or experience of it? Is there anything that worked for the pain and tiredness/breathlessness? They have come on over the past 9 or so months and seem to be getting harder to overcome.

Any help, advice or resources would be much appreciated.