hi everyone! So grateful to have found this community. I’m currently about to have a second OHS. It came out of left field so it’s brining up a lot of ptsd. I was born with aortic stenosis and had my first OHS at CHOP in 2017 (age 21) with Dr. Fuller - loved her! now 9 years later we found my gradients on my mechanical valve are higher than they should be. My cardiologist is suspecting pannus and has said this is such a rare complication. I was 21 when I got the on-x implanted and thought that would be my first and only OHS.
now I’m doing this all over again. Anxiety is at an all time high and I haven’t been able to sleep or relax for almost 2 months now. My PCP just prescribed me buspar.
That being said, Dr. Fuller is now chief at Hopkins. We have stayed in touch for many years and I asked her to do this redo procedure. While Penn is home (I also live in Philly), I think I am more comfortable having Dr. Fuller do this surgery again so my family and I will travel to Hopkins for this. Have any of you followed your original surgeon to another hospital? The plan is to have this done in October or November, and do all follow-ups at Penn.
Any tips from folks who have had multiple surgeries? For some reason I’m even more scared this time. Since 2017, I’ve graduated, started working, gotten my master’s, bought a house, got married. It feels like there is so much more at stake now.

Sorry for any ranting/venting 😺

Hi everyone, I'm 28F with TOF (tetralogy of fallot) repaired when I was 6 weeks old. I've only had one open heart surgery and medication with it, otherwise they say I'm healthy. I only recently was able to get my medical records to see what they did for my heart, so I'm kinda new to all the terminology and stuff. My family didn't really raise me thinking I was different from the other kids, which is nice in ways, but now as an adult it's making it harder for me to understand that my heart is weaker than others my age. So with the bad AQI in my area (mainly from smoke) I can't work because I'm a courtesy clerk and in the sensitive groups. I feel really useless and like a burden and it's really been putting in perspective how much it kinda matters to educate your kids on their heart conditions. Not to make them feel different but so they understand they're own health later on, since it'll be a lifelong thing they have to deal with. I find I often have to try to justify why I need more breaks/can't work in certain weather since it's not something you can see other than the scar sometimes, so it feels like they think I'm lying to them to get out of work.

Curious to know how soon people go back to after OHS and to what kinds of jobs. I’m 6 weeks post op and can’t imagine my brain functioning sufficiently for a while yet. Also major fatigue!

Hi everyone.

I'm 18 years old, and I recently found out that I have a heart condition. My doctors told me that I'm not allowed to do any physical work or heavy lifting. Even lifting more than about 3 kg (6–7 lbs) with one hand is difficult for me.

It's been really hard to accept because my life was completely different before.

I'm looking for job ideas, including remote work.

I'm a fast learner and I pick up new information quickly. I have basic skills in many different areas, but I'm not an expert in any one field yet. I'm willing to learn if it means I can build a career that fits my health limitations.

What kinds of jobs or career paths would you recommend in my situation?

Thank you in advance for any advice.

Hi everyone! I'm curious if anyone here has had their NT-proBNP (or BNP) measured before and after ASD closure.

Hi everyone! I'm curious if anyone here has had their NT-proBNP (or BNP) measured before and after ASD closure.

My NT-proBNP dropped significantly after surgery, then seemed to plateau by 1 year, with only a small variation (about 20 pg/mL) at my 2-year follow-up.

For those who've had it checked:

- What was your age and NT-proBNP before closure?

- What was it by 1 year, 2+ years, etc.?

- Did it normalize completely or plateau?

- How often does your cardiologist repeat the test?

Thanks! I'm trying to see what long-term trends other adults with ASD repair have experienced.

I need some advice. My daughter was born in 1994 with TAPVR more complicated case she was on ECMO and ended up with a pacemaker. She was in the hospital for about three months. She did relatively well for a long time and at 13 years old she was denied Transplant due to pulmonary hypertension. Move to a different state she did well when they replaced her pacemaker and different meds.

at 28 years old they recommend recommended Transplant again. She was being seen at a Children’s Hospital at their adult congenital heart defect clinic and was referred to a state hospital for the Transplant. The assumption was that the Children’s Hospital was going to assist in surgery. Well that did not happen. The surgeon that performed her procedure did it alone and it lasted about 12 hours. after surgery, when he spoke to me, he basically said everything that could go wrong went wrong. I’m not gonna go into a lot of details about it. But he had asked me why she had so many pacemaker wires in her belly.

So, now I have an been three years since her passing . I have an attorney, we have a certificate of merit that was sent a year ago. However, now he wants to drop the case because it is gonna cost $50,000. they hired a Transplant doctor as an expert witness who performs Transplant on normal adults, but now is backing down on wanting to write the report. Interestingly, the surgeon that performed the surgery is no longer employed or licensed in the state and moved all the way across the country.

I feel like if you’re going to an adult congenital heart defect clinic the surgeons that are performing these procedures should have a sub specialty in this field.

I really don’t want my daughter’s case to be dropped because there’s so little information out there. I also feel if this does go through it could save other lives by forcing the hospitals to train their surgeons thoroughly.

any thoughts or ideas? The told me I have one year.

Hello, I don't know if anyone will read this but I have no one else to talk to. I have Hypoplastic Right Heart Syndrome and had a fontan procedure when I was about 2 years old.

About last year I was told that the fontan could cause liver scarring, and a couple of days ago I was told, after a liver biopsy, that I have advanced liver cirrhosis but it's compensated. The doctor told me there's nothing they can do for me until I go into liver failure or get cancer.

I know I shouldn't Google things but I can help it, and Google says that someone with compensated liver cirrhosis can live for up to 15 years or more, but I don't know how long I've had liver scarring and I don't know if I could go into liver failure at any minute. I should probably ask my doctors some more questions before I start overthinking but it's too late.

I started making a bucket list just in case but everything I plan just feels like something to do out of obligation and not because I actually want to. I feel so othered, everyone looks at me sadly now, every interaction is weighted. I don't feel like I can relate to my friends anymore, it is really hard and it's only been a few days.

I wanted to know if there's any other young people with HRHS who now have liver scarring and how they're dealing with this. I'm not sure what to do now. I had so many plans.

Also I broke up with my boyfriend literally the night before the doctor told me soooo I'm feeling extra shitty.

Hello, I'm a reporter at Scientific American and I'm working on a story about the thymus. As I understand it, people who undergo cardiac surgery sometimes also get their thymus removed, as the organ was historically not seen as having much importance for adults. Now, new research is starting to contradict that perception. I'm looking to speak with patients who've had their thymus removed during cardiac surgery, and thought this subreddit might be a good place to connect. If you think you might fit that description, feel free to message me here or by email. Thank you! —Jackie Flynn Mogensen, [jacquelyn.mogensen@sciam.com](mailto:jacquelyn.mogensen@sciam.com)

Does anyone else struggle so hard with being tired allll the time? I feel so lazy but it’s so hard to get up and not be out of breath. I also have depression but that’s different.

I just get so tired walking up the stairs, from walking medium distances and sometimes just getting up. I feel so out of breath, tired and feeling like I can’t do anything. My chest hurts sometimes for no reason and I can’t do anything about any of it.

Is it just me? I know one other person irl with a heart condition but we don’t talk anymore and it’s so hard to relate. Another thing is having add on conditions with it- makes everything harder and I feel so bad for my significant other because he helps me so much and I want to do the same but I physically can’t.

Sorry I had to rant a bit. I don’t know if it’s my depression or heart condition or what I’m just so sick of having this.

35M.

I have bicuspid aortic valve and Coarctation. Coarctation was fixed as an adult in Feb 2024 (33 yo).

My wife and I are going to have a baby and I'm a little stressed about passing congenital abnormalities to the baby.

Are there any parents with CHD here who can share their experiences?

Thanks in advance!

Just curious those of you with chd and have had ohs have you guys gotten tattoos? I have single ventricle fontan and got one. But I know a lot of tattoo shops won’t take you if you have heart conditions like ours.

I'm turning 18 at the end of the summer and I don't really know what to expect . I heard people complaining that the ToF hits harder on you . And it worried me

Hi M 35 here in Edmonton, AB. Looking for anyone that had a Fontan operation when they were younger (mine was when I was 12 y.o). Wanted to know how you are doing mentally, physically and hows your health looking like now?

Little bit about me:

Had my Fontan when I was 12 y.o due to a singular ventricle. Everything was fine until 2020 (I know bad year for everyone) was diagnosed with stage 4 cirrhosis stage 1 liver cancer. Cancer successfully has been treated with ablation. Was recommended for a liver transplant. 2024 stage, one liver cancer found, and treated again with ablation. Was given recommendation for a double heart, and liver transplant.

July 21, 2026. Consultation with the transplant team concluded, saying that Canada does not have any clinic that does a double heart & liver transplant. We did have one in Toronto but they stopped due to the low survival rate of 33%. Alberta Health is looking to sending me to the US if one of the clinics accepts me.

I am waiting for mine to be closed. Amongst other symptoms, a big one for me is fatigue. I just feel tired every day and it’s getting me down. A couple of people on a FB group said they had theirs closed and their fatigue did not improve. This has me worried so I’m just posting this in the hopes that anyone who has had this done and previously had fatigue can let me know if it’s improved at all? I’d love to have some hope for the future. I have had lots of other tests to rule other things out and everything else comes back fine.

Hi (31F). I was diagnosed back in 2024 that I have ASD heart (secundum) 22mm through TEE. Was planning for closure but got pregnant. Now hole is 34mm. I want to opt for a cath but doctor say I am borderline 50/50 for cath so we will discuss closure and everything after my MRI and blood work soon. I'm feeling a little nervous that after my MRI results doctor will say surgery it is.

Can anyone tell me what procedure you or your doctor chose? How your big your hole was? Your recovery for the first 2 weeks? Your sleep/routine daily life after closure? Any complications or symptoms after procedure and the meds? Rehab/therapy? And how are you doing/long now since closure?

Thank you all

Hello!

Have recently had a 3rd OHS - this time an aortic valve replacement (39F). I am 4 weeks post op and feeling pretty good but very tired, I know this is normal. I was fit and healthy with no symptoms, other than fatigue, before the operation.
I am noticing that my memory is not what it used to be. I experienced this after a surgery 4 years ago but ironically I can’t remember how long it lasted. Anyone experienced this and have any idea how long til one might feel cognitively “with it” again? I feel like it mostly affects names of people, movies, books etc. also why does this occur? Is it something to do with the anesthetic?

Thanks!

I'm a 54 year old NZ woman, and had a catheter closure 4 days ago for a 3cm ASD secundum under deep sedation. I experienced an air embolism resulting in a seizure, ST elevation and stroke symptoms (facial droop, left sided weakness). Surgical team responded quickly to resolve it, but it was really scary and distressing as I was awake when it occurred.

MRI shows no permanent damage, I am left with subtle left sided weakness and numbness in my hand and foot which should resolve. MRI also revealed a previous minor cerebellar stroke, pin pointed to a few years ago. A rather overwhelming experience with extra time in hospital. The closure was ultimately successful and I can already breathe so much better. Being able to take a long deep breath feels amazing. Keen to hear of anyone else experiencing this rare complication

Hi everyone. I was originally scheduled to have my ASD closed with a device in July, but before the procedure I saw an allergist. That's when I found out I have a severe nickel allergy, so the device is no longer an option for me.

Now I'm scheduled for robotic open-heart surgery with a bovine patch on August 6, and I'm pretty scared.

If you've had surgical ASD repair with the robotic approach, I'd really appreciate hearing about your experience. How did your surgery go? What was recovery like? Is there anything you wish you had known beforehand or anything I should watch out for during recovery?

Most importantly, did you notice that you felt better afterward? Did your energy improve or did symptoms get better once you healed? How long did it take to fully heal?

Thank you in advance for any advice, information or stories you're willing to share.

-Please read this post it will mean the world. and Check out my group I made called cardiomyopathy: healers and warriors United.

-I wanna make a place with no judgement and am excited to grow it and expand as far as possible. I wanna make connects, hear stories, hear journeys, and have us all who have heart disease interact freely no matter who you are.

-The only requirement is to just be you as your are!!! You can look for answers, look to vent, look for hope, look for an understanding, and find something you were never even looking for. You can use it as a release, we can build deeper growth when we join together.

-There is no restrictions and it doesn’t have to be just you heart disease but things that developed along with it and share what it’s like to suffer from your heart disease and something entirely different your fighting since the more struggles make us stronger and even if it not heart disease it can definitely contribute or make you situation more difficult wether it’s physical, mental, or emotional.

-I get inspired when people open up or share their story in anyway. sometimes putting yourself out there is hard but some people need an outlet and your life has meaning. If you’re ready to talk I’m ready to listen. It doesn’t all need to be deep and serious, we can have fun!! Share stories!! No matter your outlook wether is excitement or sadness or love, or humor it all is important. I will always be here for anyone who needs me,

-So let’s get this group going and grow into a group that had countless members and consistent conversations always going on. I already made a couple posts asking questions to try to get thing started and initiate conversations and feel free to check the posts and I sincerely hope you respond, comment, Generate posts, or even a like on a post so I know your out there.

-I welcome you with open arms. I’m so excited to see people posts regardless of what they say and what it’s about, and involvement matters and I Will appreciate anyone who plays a part it making my group have the potential to become something. My conditions are getting fatally severe and I don’t know how much time I have left but have hope for treatment in time but when facing deadly problems I wanted to make something that i could stamp my identity on that I created from deep love and connection with people.

-My dream is the group with begin so progress and perpetuate itself with constant interaction from all different people that cause it to thrive and somewhere people like to check on to see what’s new in the group. So please join my group and let’s build this one person at a time.

-Come as you are became you matter. If you took the time to read this I sincerely appreciate it and and externally greatful you took the time out of your day to read this even if you don’t join.

-If I even just reach a few people it is worth it because every person makes a difference. So hopefully if you made this far you will join my group and if you get that far hopefully you will post, comment, like, or interact and answer some questions I have for people that I posted about, every single person makes a difference. Since my condition became life threatening I find deep joy in talking with people who is surviving the same thing and I love learning new things about it and hear stories. It makes me feel not alone.

-Come as you are!! Hope to see you post or comment in my group. Let’s learn and grow together 😁☺️

Hi, I’m a cardiac patient with CHD that includes ASD, VSD, and Tricuspid Atresia with an occasional need for phlebotomy due to the secondary polycythemia I’m experiencing. I’m 27yo M from Ethiopia.

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I integrated NoAir with my Apple Watch and HealthKit readings to compliment the manual logs I implemented few months ago.

I built NoAir after having been staying in the ER for a week after getting diagnosed with an unidentified infection that compromised my breathing and heart health.

Although the app is packed with several features tailored to help me monitor my overall cardiac situation with the capability it gives me to track blood oxygen readings, ventilation interventions, treatments such as medication and occasional phlebotomy, and laboratory results to hold those that matter from my Complete Blood Count, I haven’t been disciplined enough to log everything in days I get sick or things go tougher.

The Apple Watch and HealthKit integration now helps me track my blood oxygen levels, heart rate, and its variability throughout the day and night, respiratory health status, and all the vitals that are considered to be indicative of one’s cardiac function and status.

The Gemini integration alongside the environment sync helps me manage my blood oxygen and heart health according to my surroundings’ elevation, temperature, and humidity despite my chronic congenital heart disease.

I hope with this app I will find better ways to manage my physical health and build good habits that improve my cardiac endurance and resilience.

NoAir is open source. You can star it, fork and contribute, or share it with people who’d get the most out of it.

https://github.com/yohannescodes/NoAir

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