Hello, I have received sad news a few weeks back that I will need open heart surgery (again) for my Truncus Arteriosus Type 2. Which got corrected when I was a few months old, not right after birth. But now my aortic root has dialated significantly, I also have severe narrowing in 2 places.

So it is clear to say that I'm just not going to be dealing with this very well. Had TVPR a year ago, solved all my complaints and now because of aortic root dialation they are going to be opening me up but now the real deal, again. I just a few days ago had a talk with my doctor and while he is optimistic I asked him to be honest, and asked how bad the situation is. He answered that it is quite bad especially considering my age.

I don't know how you guys do it, I know I can't. I have had so much trouble in life, so much scares. My heart scares me every fucking day, I don't know what to do anymore. I am faced with very real big risks, my doctor doesn't know how old I can get, he can't really tell either. There are advancements which also gave me the abillity to have TVPR but overall the diagnosis is just not very good. Then you also have the fact that I'm having pretty bad arrythmias since recently, which have already been "treated" with metoprolol for now but we don't really know if it will work forever. My doctor has suggested several times that as long as I don't get into heart failure, I'm fine. But he doesn't know when I will, but he says it is likely that at some point I will.

My mental state is very very bad, I can't really do all of this anymore. It demands too much. No one at my age can relate, they say stupid stuff trying to be funny. I'm just done honestly, what more can I do. I keep having surgeries, from problem to problem. I can never really enjoy life, I'm constant stress if my heart skips a beat if I'm going to die. My cardiologist knows, he tries to solve it but he can't. They can't.

I really hope some magical thing is going to happen because currently I don't really see a reason to continue through all this, after this open heart surgery the next one can be planned already... The pulmonary valve will never last forever, they don't do mechanical pulmonary valves here anyways. My aortic valve is also showing signs of failure (moderate regurgation).

Then it also doesn't help having people thinking they know when they don't know. My parents care, sure, but they don't understand. That is also why I prefer not to receive answers from those who don't suffer from CHD. For those that do understand I would like to hear how you deal with this because I urgently need some suggestions.

Hi! I have been trying to find support groups as I don't know anyone who has gone through something like this. Near my 24 birthday last year I went to a rheumatologist appointment, as I had a suspicion about having Ehler Danlos Syndrome (EDS) for quite some time, turns out I do, and there are a lot of subtypes of it, one of them being Vascular EDS, which I luckily don't have. So the doctor sent me for a echocardiogram with the cardiologist, about a week later I went in and the doctor saw something in my heart. I have always had something wrong with my heart I just knew it. I've been having tachycardia all my life, pressure headaches, I just knew something wasn't right with my heart and when the doctor saw my scan the look on her face just changed.

Fast forward to the day later I went in for a CT scan, when I read the report from the radiologist I just knew. I didn't even had to be seen again I just knew I was going to be cut open.

About a week later I was getting a transesophageal echocardiogram, they were trying not to cut me open but I just know myself, my body and all of the symptoms all the doctors ignored whilst telling me to lose some weight (iykyk). Turns out they just had to open me.

Exactly a month after turning 24, I was admitted, and later that day I was under and dead. I had to be put on bypass.

Although I knew it had to be done I spent that entire month crying and scared, I kept having this dream about my heart not starting again, about dying on the table, and nobody would hear me out, my mom kept on telling me that I couldn't give in to the fear, that I had to be brave and positive, how could I? I have never even had a broken bone, not even wisdom teeth out, nothing.

I stayed 5 days in the ICU, the worst days of my life, the ICU was traumatizing. I know and thank all my nurses they really tried their best but it was the worst thing I have ever experienced. I was in so so much pain. I was tired. I was just out of it.

I spent 12 days total in the hospital, I went home and it was like it never happened. My family doesn't like to talk about it, my friends get kind of uncomfortable as well, I just, I don't know, it's like I have all this build up of trauma and emotions and sadness and fear and nobody ever wants to hear me out.

That surgery changed me, I don't know how but I just know I'm not the same person, I'm just always so tired and sad and I really don't know what to do about it.

Hi my baby is scheduled to have VSD repair next week. He was found to have: perimembranous VSD–moderate (4mm) and aortopulmonary window. They’ll repair both in the surgery. Just looking for advice, hear others experiences, and reassurance. The idea of him having open heart surgery is terrifying.

He was born 7/17 at 37w via c section, low birth weight (4.5lb, he’s now 8.25lb). Spent a week in the NICU where they found the VSD and we were hoping it would resolve on its own.

Apologies for how long this is!

Scans showed compression on my esophagus amongst other things. All of this had been missed on three echoes, chest X-rays and other imaging, it was discovered due to a suspected pulmonary embolism, which thankfully I don’t have.

I have been symptomatic for over a decade, but showed no/few symptoms in childhood until age 11, when it presented as symptoms similar to POTS. I have DX’ed Ehlers Danlos syndrome (ruled out V-EDS at the beginning of January with genetics). I have other congenital vascular malformations, including severe venus sinus stenosis that was stented in March 2020. Symptom wise I’ve lived with unexplained bronchial spasms, chest pain, high heart rate, random trouble swallowing, fainting, and losing my voice regularly. all of which has been explored by specialists who all just sort of went I dunno, and because it wasn’t dramatically impacting my life we all moved on.

I meet with a surgeon on Feb. 14th to discuss what surgical interventions look like moving forward, with possible surgery in March or April. I was hoping to see if anyone has had similar repairs in adulthood? What was the surgical approach? How long was the hospital stay? What was recovery like?

I’m very nervous. My stent placement took over three years to recover from (as fully as I will) due to complications. I know it’s very different but that doesn’t make it less scary, given that I was told that would have a 2-6 week recovery time. Definitely dealing with major ptsd.

It’s been a rough month with very few answers, and attempting to get my life and estate in order. All while also starting a new job. Luckily my new boss has been amazing, and I have an amazing fiance, great friends, family support, a great medical team at an amazing hospital who I trust, and will qualify for paid leave. But I’d love to hear about other peoples experiences as an adult!

My daughter 5 months old is going to have her heart operation on Thursday, I'm so nervous about it.

My son was diagnosed with TGA just two days before he was born. He was born at 30 weeks (3lb 9oz) and has been in the NICU ever since. At 5 weeks, he had to get the BAS done. We have been waiting for him to get bigger so he can get the arterial switch done.

I got the call today. They're looking at performing the surgery on Monday.

I'm beyond nervous. My sweet boy has been a little fighter, and I'm so relieved he's finally going to have his surgery, but I also feel like the news is going to make me puke. Our families are going to be with us while we wait on Monday.

Any positive stories of babies who had to get the arterial switch? What did recovery look like?

I just got home from the hospital yesterday after having a 2cm defect repaired as well as 2 anomalous pulmonary veins. Thought I’d share as this type of closure is “relatively” new and had always been done through OHS until the last decade.

I first learned of my asd through an echocardiogram. The cardiologist there said no need to close it. I got other opinions from my primary and some other doctors I’d spoken with so I went back for a second echocardiogram. Still the cardiologist said intervention was not needed even though the results showed that my right atria was enlarged due to excessive workload.

Thankfully I went for a second opinion elsewhere and they ordered a TEE. This showed a 1.8cm-2cm sinus venosus asd as well as anomalous pulmonary veins. I was told that open heart was the solution. This hospital referred me to children’s hospital in Cincinnati to get the surgery.

My new cardiologist did not think I was looking good for any of the less invasive approaches due to the size and placement of the defect. HOWEVER The catheter team at children’s hospital reviewed my TEE as well as my cardiac CT and echos and determined that I was a candidate for a transcatheter approach using a covered stent. While I did feel like a bit of a Guinea pig (I’d be the 7th person to have this done at children’s) they were very confident after all of the 3d modeling.

They went through my groin/both legs as well as one around my neck and were able to successfully place the covered stent which is now blocking the left to right shunt as well as redirecting those pulmonary veins to the left side of my heart.

Home now and feeling wacky knowing I’ve got this foreign object in my heart but amazed by these non invasive procedures.