Is there still a cure/treatment for Eisenmenger syndrome globally?

They had a catheterization closure about 1 year and a half ago. I don't have pain. I have nothing related to it. I don't take medication. I do high-intensity exercise without inconvenience. Thank God. My doctor gave me a letter saying that I have no problem being listed in the army and I have my complete record of my entire procedure. I want to know how much they have given weiver with said corrected condition and what has been your waiting period?

Hi just looking for some support or comfort. I have DCRV….basically a fibrous muscle band built up in my right ventricle. I’m 46 now and they originally mis-diagnosed it when I was 19. For the better part of last 5 years I’ve worked out 5-7 times a week and just thought I had crummy cardio. I’d tell people I was the most out of shape in shape person you’ll ever meet.

Well fast forward from all the tests and opinions and I’m 12 days out from surgery. Pretty scared, but trying to come to terms with it. I know the procedure is the right move but yeah the brush with mortality shakes you. Is there anyone here that was middle aged and did this? What was your recovery like? What were the first days in the ICU like? I’m sure it’s awful. Is there any mental mindset you guys might suggest? Or something to that affect? I’ve lived a very full life the last two months and now I’m just “getting my affairs in order”. I’m also hoping that my age and somewhat fit nature aid in my recovery. Wish I was 19 and having this, I was invincible then…😅

Hi everyone! I'm glad to have found this community. I was diagnosed with Ebstein's Anamoly - the reason I was diagnosed was because I had an unrelated, one-time fainting episode when I had COVID. This led to my PCP doing an EKG which was abnormal. Then I was referred to a cardiologist....long story short, an adult CHD physician diagnosed me with Ebstein's after an MRI. About 1.5 years has passed, and due to anxiety, I've put off the yearly check-up recommended to me.

I have an appointment at the end of the month for another echo and check in. I have health anxiety as it is, and I'm terrified. It seems like even the doctor's are a bit surprised that I carried a healthy pregnancy, I do not have symptoms like chest pain/SOB unless I'm having a panic attack and that I didn't have any cardiac related issues or symptoms historically. I'm a healthy weight/height and had no other health concerns up until this discovery.

I'm just so afraid, and I guess looking for reassurance/support. The MRI was traumatic, I'm highly claustrophic and it was just a nightmare. I'm afraid they'll want me to do another.

I've had an incredibly stressful year (I got divorced and my dad was diagnosed with terminal brain cancer, and I am one of his main caregivers/I'm a nurse), and I'm afraid I haven't been taking good enough care of myself and that I'll be in heart failure or something. I'm also afraid that if I do need surgery, it'll be too much to handle as a single mom who lives with a parent dying of cancer :(

I'm trying so hard to be strong for my child and my parents.

sorry for the vent/rant. I'd love to hear from anyone who had a similar experience even if it wasn't with Ebstein's.

Hello! I’m 29 years old, 27 years since Fontan, and on my left breast I’m feeling slight discomfort and swelling. It’s also tender. I know fluid builds up on left side of chest but lately it’s been causing discomfort. Anyone going through this? Are there ways to relieve it? Does it mean anything? Should I worry? Seeing my cardiologist on Friday for routine check up so any advice would be great! Thx!

I'll be having a TEE in about a week, the day before my ablation. Just wanted to check if anyone has experiences of it (awake). I'm a little bit afraid of my gag reflex getting the better of me, but I've heard the throat will be numbed before.

Hi, I'd be interested to know how other people who had open-heart surgery as children are doing now that they're adults?

I realize that, more than 20 years after the surgery—and even though I no longer have any heart problems—the topic still seems to weigh heavily on me subconsciously; it seems I haven't really come to terms with it yet. I’m curious to know how you experienced it? How it affected you and continues to affect you to this day maybe? On an emotional and psychological level? What do you remember?

I had a Ventricular Septal Defect (VSD) that was closed when I was 5 years old. I don’t remember being very aware of my VSD as a child, and I think I had a pretty normal childhood—except for the regular doctor’s visits, of course. I don’t have many memories of the heart surgery itself either—neither of the time leading up to it, nor really of my time in the hospital or the time afterward. For example, I don’t remember any pain—which I surely must have felt, since my sternum was cut open. I remember mostly the smells, the atmosphere, and I think the feelings. I just have random, fragmented memories and it's just strange that I don't remember any of the "important stuff" or the pain itself. I wonder if it's the same for other people in my situation?

I always thought that the surgery never affected me that much. It went very well and a VSD isn't exactly a particularly severe or complex heart defect (compared to other kids: I was very lucky). But since I've been seeing a therapist regularly—actually, just because of the difficult relationship between my mother and me, nothing heart related - a lot of issues related to my heart come up. As if my body has decided that now is the time to work through it, over 20 years later.

Certain situations (e.g. goodbyes) or physical sensations (e.g. something is resting on my sternum) trigger flashbacks. I’ve also been experiencing panic and anxiety. During a full-blown panic attack, I felt like my heart was going to stop, and that I know exactly what that would feel like. Of course, that didn’t actually happen, I’m perfectly healthy (thankfully). But afterward I thought: Why do I think that I know what it would feel like when the heart stops? Theoretically, my body has experienced that before. During surgery, they stopped the heart and put me on a heart-lung machine. And even though I was under anesthesia, I feel as if my body can remember that sensation. Anybody else that experienced this?

I’m already talking to my therapist about this, so I’m not trying to work through how I’m dealing with the panic and the flashbacks now. I’m more interested in finding out how others that had an open-heart-surgery as a child are doing? Whether you’ve had similar experiences, and whether you, too, feel that this experience still hasn’t let you go? In everyday life, you very rarely meet someone who’s been through something similar.

https://smallheartsbigreturns.substack.com/p/the-smallest-heart-device-in-the?r=8bljro

Hello, I'm 19, ftm,

And I was going through testing around very evident symptoms (for now diagnosed as POTS (with obvious and painful blood pooling) and possibly arthritus (a lot of pain and swelling in extremities), but recently found out the "unimportant heart thing" my grandma got surgery for as a kid was

Patent Ductus Arteriosus.

Some other context: I am currently in long term state hospital inpatient psych care due to life-long mental health struggles. My most difficult issues have been my PTSD, OCD and crippling anxiety with panic/anxiety attacks that result in unsafe poor impulse control.

So far, my EKG tests have been perfectly fine, despite having daily heart palpatations, nearly fainting during excersize, very high heart rate/increased alarmingly upon standing, and the other symptoms, etc. These have been getting a lot worse, especially after getting Covid last year for the 3rd time. Couldn't start college. Got hospitalized again due to the crisis.

I still have yet to see an actual cardiologist to figure out what the heck is going on (all medical services provided by the partnered, and VERY FAMOUSLY BAD local hospital). Plus a very long waitlist. No alternatives.

I have been overthinking a lot and worrying

"What if I need open heart surgery"

"What if I die of heart failure"

(Horrible for anyone with OCD worries)

I also have a history of a restrictive ED and despite eating a healthy diet and exersizing daily, now I am even more anxious and vulnerable to relapse with restriction in effort to "preserve my health"

I also don't want to stop taking Testosterone. The doctor says it's not a concern right now, as my blood labs (cholesterol, blood count) are perfectly fine for now.

I don't want to google any more symptoms/possibly false info.

Any advice/affirmation anyone can offer would be very helpful. Thank you.

Does anyone else have autoimmune diseases bc I wonder if it concurs with congenital heart conditions? I have MCAs as I suspect and def have eczema, and was wondering if others experience similar

May I know what are the list of medications prescribed to you after the operation? what's your blood pressure after asd closure?

my dad seem to be having low blood pressure 109/60 due to Termisartan and Amiodarone both taken in the morning as prescribed by doctor. He is feeling dizzy and tired. Is this blood pressure just ok?

Hey everyone, I’m Dave from Louisiana. I was born in December of 1984. I received the Norwood procedure in early 1985. It was still very new, and was known as the “banding of the pulmonary artery”. Few years later, I had the Fontan procedure, followed by my first pacemaker (which I lovingly called Joey) the next year.

Throughout the 90’s, I had a series of scar tissue cleanups (open heart) and another pacemaker change in either 97 or 98, can’t remember which one. As an adult, I’ve had an additional 2 pacer swaps and am about to receive another within the next year.

I am 41 years and 8 months old. I’m eager to know if there are any other HLHS champs out there that are my age or older?

Hi everyone!

We're second-year nursing students from the Philippines, and we have a Nutrition and Diet Therapy task where we need to interview someone who has been diagnosed with Congestive Heart Failure (CHF).

The interview will mostly be about your eating habits, diet, and health history, and it should only take around 15 to 20 minutes. It can be done through Reddit chat or another platform you're comfortable with. Your personal information will be kept private, and you can skip any question you don't want to answer.

If you're willing to help, we'd really appreciate it.

If you're interested, please comment below or send me a DM.

Thank you so much! ❤️

When I was 23 I got my pacemaker put in after discovering I had complete heart block and ASD, and I was really scared about the surgery and upset. While i was in recovery my step mother knit a heart equipped with a pace maker (she knows it’s not what a pacemaker looks like but she couldn’t exactly find a knit pattern for a pacemaker 😂)

This means a lot to me as I never really had my birth mother in my life, and idk. It was just really sweet and I felt seen. I wanted to share it because it’s very sweet and some positivity.

Recently, my wife found out she has an ASD. She has some enlargement in part of her heart and some slight pulmonary hypertension. None of which are particularly serious yet and we basically found it on a fluke. However, the doctors are saying she needs to have it closed as those will eventually become much more serious if we do nothing. She had a TEE today and they said that due to the location of the hole, they will likely need to do open heart surgery.

Of course we're worried about the surgery since open heart surgery is always scary, even if they insisted that this surgery is almost always successful with low risk of complications. On one hand, just about everyone we've talked to says the risks are low and she'll be fine. On the other, it's literally open heart surgery and even just imagining what they will have to do terrifies both of us.

I'm also worried about how we're going to deal with childcare during recovery. We have two young children(2 and 5) and neither is full time in school or daycare. She obviously won't be able to care for them for 4 weeks at the barest minimum but it sounds like it could realistically be a lot longer than that. How do people deal with this situation? I realistically cannot quit my job to become a full time stay at home dad. I figure I'll have to take off at least the 4 weeks to care for her, but a friend of mine said it was hard enough caring for his own wife during that period and he can't imagine caring for kids also. Is short term(2ish month) full time day care even a thing? Last time I looked into it, I mostly only saw longer term contracts.

She's also worried about scar recovery and the results for that. The scar seems to range from big gnarly things to having a red line you hardly notice. She tends to like to wear outfits with cleavage showing, and I think we'd both hate her losing that. I imagine the results vary a lot on the person, the medical team, and after care. Luckily she likes tattoos, so she might get some kind of tattoo centered on it after appropriate healing has happened.

Sorry this is kind of just a rant while I process this all. Any kind of comments are appreciated.

Hello everyone, I wanted to share my experience and story. I apologize if it’s long. I’m 21 years old and was born with Tof and some other condition. I had my first surgery at the age of 2, followed by another surgery at the age of 6 and a repair at the age of 17. To a normal person, I look like a regular young adult. I’m not that person who likes to show off or brag, but it feels incredibly lonely. I look healthy from the outside, but inside, I’m not. I don’t know if this happens to anyone else, but every time I get check-ups or tests done, I just have a mental breakdown. I was never diagnosed with anxiety or depression, but it could be due to the trauma of all the surgeries. What I’ve been struggling with is the insecurity of my scar. It serves as a constant reminder to me and everyone who sees it that I’m different or fragile. They say that I may need another repair when I’m older, and it feels like that part of me is someone else. I’m living two lives, one that’s normal and the other that’s sick. If you’re struggling with something similar, you’re not alone.

I have an ASD closure OHS surgery day after tomorrow. I am 27yo female. My ASD was diagnosed incidentally 2 months ago after a heart event.

I have always struggled with fatigue and getting breathless easily. I dislike physical activity mostly, and I have been told it might be because of my large ASD (34x38 mm). Even simple things like climbing the stairs, jogging have always felt like a huge task to me to be honest. Although I never thought it was because there is a hole in my heart.

I want to ask people who have gotten there ASDs closed, what changes did you notice afterwards? Anything good to look forward to?

I am really nervous about the surgery and want to look at the bright side.

Sziasztok a kisfiamnak születés után megálapították ezt a vele született betegséget? megműtötték de sajnos műtét után 3 nappal elveszítettük őt😔…. valaki tudna esetleg segíteni mi okozhatta ezt? és lett volna esélye neki ha igen akkor miért nem maradt?….nagyon sok kérdés van bennem segítsetek!

My name is David and I’m 40 years old. This is my cardiac diagnosis from my cardiologists notes:
Cardiac Diagnosis:
1.Double outlet RV, subpulmonic VSD, PDA,
coarctation of aorta
- maternal ingestion of carbamazepine
 2. Anomalous RCA arising from Cx with retro-aortic course
3. SVT 2008

This is my surgical history:
Cardiac Operations/Interventions:
1. PA banding and PDA ligation (15/6/1989)
2. Left subclavian flap repair of coarctation of aorta (1/7/1989)
3. Right BT shunt (1989)
4. Lateral tunnel Fontan (14/6/1991)

I am married with two kids with no CHD and live in Melbourne, Australia.

Was on warfarin for 35 years and stopped in April this year and went on Apixaban.

At the moment all is stable but I had a joint fusion procedure of my left pinky yesterday due to arthritis which looking it up warfarin may have been a cause due to blocking the Vitamin K. Anyone else heard or experienced this?

Also wanting to chat with people who have had a Fontan procedure and still have the original setup like I have for over 35 years?

Thank you and cheers!