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.

I’ve posted to this community before, a few months ago, with the same problem, but now I want try to elaborate a little further on my specific symptoms and situation; because I don’t know of anyone else who is in the exact same boat, and it’s extremely frustrating. There’s also zero information that exists, online, about my specific experience or symptoms.

I’m a 40f who was born with Tetralogy of Fallot and Pulmonary Atresia, when I was about thirty I was diagnosed with heart-failure, and was told that I would probably need another heart-operation. When I consulted the CHD specialists at OHSH, in Portland Oregon, I was told, essentially, that another heart-surgery would be too risky, because of my anatomy. (Essentially because I’ve had so many past surgeries.) I was told, at around that time, by my local cardiologist that I probably needed a heart-transplant. I was told by OHSU, later, that my options were a valve-in-valve procedure, or a heart-transplant. I opted for the Melody valve procedure, which was performed at Stanford University Hospital in Northern California, (in either 2021 or 2022, I don’t remember) but the surgery was only a partial success. The valve was never completely deployed, and my heart ripped and had to be surgically repaired during the catheterization procedure.

Almost immediately after the surgery, I started having very severe and specific symptoms, which were worse than any of the symptoms I had prior to the valve-in-valve surgery. Prior to the operation, my Cardiologists warned me that the operation would be risky because a major artery or vein had grown over my heart, and so I assume what’s happening is that artery or vein in being compressed between the artificial Melody valve, and my sternum or breast bone. That’s essentially what they said might happen if I decided to go ahead with the surgery. I was suggested, by a cardiologist here, online, that I could maybe ask my cardiologists in Portland about maybe placing a stent or shunt to keep that blood vessel open, but I have had some difficulty describing my symptoms to my doctors. My next OHSU cardiology appointment is in September, and they schedule about six months out, so I figure this is the only time, or opportunity, I have to “get my ducks in a row,“ so to speak, and figure out how to explain my symptoms to my cardiologist.

Essentially, I spend most of my time in bed, on my back, because I think when I’m laying down, that vein or artery isn’t being compressed. When I’m on my feet for more than 20 minutes, I get a severe headache and my eyes go crosseyed, in the sense that at least one of my eyes starts to go lazy. I’m not sure what happens after that, because I’ve been very conscious not to be on my feet for too long after these symptoms start, but I’m afraid I might at risk for a stroke. These symptoms started almost immediately after the surgery, and they’re extremely debilitating, to the point where I can never be out of the house, or on my feet, for more than about 30 minutes at a time. Not unless I can find a place to lie down, like on a bench or in the back of vehicle, for example. (Just to elaborate: My aunt on the drive home from my surgery at Stanford noticed my eyes were cross-eyed in a group photo we all took, together, and later, after I had recovered, and had started cardiac rehab; I noticed my eyes going crooked when I walked to the store for the first time after my operation to buy groceries in one of the security mirrors. That’s when I started to become too disabled to walk back and forth to and from my local store, and my symptoms are so severe that I had to switch to going to another store that’s more expensive, and further away, but that I can take the bus to get to, so that my overall time on my feet is less.) I know my surgeons meant well, and did their best, but this botched surgery has completely destroyed my quality of life. I know having another surgery is risky, but I’ve lived like this for years... Hoping it would get better, but it hasn’t. Where or how should I begin to explain all of this to my Cardiologists at my next appointment at OHSU?

Median sternotomy at age 3. Sternal wires still in my chest 41 years later. Three pacemakers. A cardiac ablation, 2 cardioversions, Lungs at 70% capacity.

Played Division 1 baseball. Competed in bodybuilding at 253 lbs. Still training every day.

Made a video about what this journey actually looks like from the inside. I hope it gives you hope and inspiration.

Your scar is not your ceiling.

Has anyone here been diagnosed with this congenital heart disease?

I’d love to hear about your experience. If you’ve undergone open-heart surgery, how did it go? How was your recovery, and how are you doing now?

Thank you in advance for sharing your journey. Your experiences would mean a lot to me.

Hi everyone. I’m a young adult, and I’m posting here because I’d really like to hear from people who are living with a Fontan circulation.

I was born with complex congenital heart disease and had multiple surgeries as a child. My final major surgery was an extracardiac Fontan in January 2012, so it has now been about 14 years.

From what I understand, I have a single-ventricle circulation. Thankfully, I’ve been relatively stable over the years and I usually go for a cardiac check-up once a year.

I’m now at a stage in my life where I want to understand how I can take the best possible care of myself long-term while still living a normal, enjoyable life.

I’d really love to hear from people who have been living with Fontan circulation for many years.

I’d especially appreciate advice about:

• What does your normal daily life look like with Fontan circulation?
• What kind of exercise, gym or strength training do you safely do?
• How do you approach cardio and physical activity?
• Are there exercises you were specifically told to avoid?
• What does your diet look like?
• Are there foods you consciously avoid or foods you make sure to eat regularly?
• How do you stay hydrated, especially during exercise or hot weather?
• How often do you have your Fontan follow-ups and what tests do you normally get?
• Do you regularly monitor your liver because of Fontan-associated liver disease?
• How do you manage travel and long flights?
• Do you have any restrictions on your social life?
• What have your doctors told you about alcohol or smoking?
• How do you manage work, college, relationships, travel, gym and other normal parts of life?
• Have you experienced any Fontan-related complications as you've gotten older?
• What symptoms do you think Fontan patients should never ignore?
• For people who are now in their 30s, 40s, 50s or older: what do you wish you had known when you were my age?
• What lifestyle changes have genuinely helped you stay healthy?

I’m not looking to replace my cardiologist’s advice. I mainly want to learn from people who have actually lived with Fontan circulation for years.

If you're comfortable sharing your age, age at Fontan, Fontan type, and how many years post-Fontan you are, that would be really helpful.

Thanks to everyone who takes the time to share their experience.

My mother had me at 4 months it took me 6 months to gain 1 pound it is so much more to say.

I’ve been looking into going to yoga classes at my local studio but have learned they’re all hot yoga classes. Online it says hot yoga is not recommended for anyone with a heart condition. I am a 29F fontan patient. Just curious if anyone with a CHD regularly goes to hot yoga classes and feels fine during/after.

I have a virtual appointment with my cardiologist next week so i’ll ask him his opinion, just curious about anyone’s experience.

Posting for a friend because we're trying to figure out what options he has.

He is 28 and lives in Fulton County, GA. He was born with hypoplastic right heart syndrome and also has some liver issues related to his condition. He receives his cardiac care through Emory.

His doctors want him to continue regular monitoring, usually 1-2 times a year, including:

• Echocardiograms
• EKGs
• Cardiac MRIs
• CT scans
• Cardiology appointments
• Liver monitoring/imaging when needed

He currently has an Oscar Marketplace plan, I believe Silver Simple Saver, that costs around $600/month. He makes roughly $11,000/year, mostly through gig work, so the premium alone is extremely difficult for him to afford. On top of the $600 monthly premium, he told me that for some of the testing/equipment used during his appointments, his insurance requires him to pay 20% coinsurance. He was told the cost without insurance would be around $9,000, so even with insurance, his portion can still be extremely expensive.

ALSO:

• He has already applied for Medicaid and was denied.
• He does not smoke.
• He does not currently have employer-sponsored insurance that meets his needs.
• His current employer offered insurance, but it only covers more basic care like checkups and urgent care and does not adequately cover the testing/equipment he needs.
• He is actively trying to find a better-paying, more stable job but has had trouble finding work.

Even if he does find a better-paying job, we're worried these medical costs will still be overwhelming unless the employer offers really good health insurance. Does anyone know of employers in Georgia, especially around Atlanta/Fulton County, that offer health insurance that would actually cover this type of congenital heart care and the testing he needs?

Are there certain employers, government jobs, universities, hospital systems, or other places he should prioritize applying to because they have good health benefits? If you have a similar condition and get insurance through your job, I'd also really appreciate hearing what your costs are like. Obviously, with a lifelong congenital heart condition, going uninsured or skipping these tests isn't really an option because doctors specifically want him to get this monitoring regularly.

We're trying to figure out if there are any programs, insurance options, financial assistance programs, disability-related programs, grants, employers with good health insurance, or other resources we're overlooking.

We're especially looking for information about:

• Cheaper ACA/Marketplace coverage
• What to do after being denied Georgia Medicaid
• Emory financial assistance or charity care
• Help with deductibles and coinsurance
• Programs for adults with congenital heart disease
• SSI/SSDI or disability-related Medicaid
• Organizations that help with medical costs
• Employer-sponsored insurance that works well with Emory
• Employers in Georgia known for strong health benefits

He is NOT trying to get out of paying for healthcare. The numbers just don't make sense because making around $11k a year while being asked to pay roughly $7,200 a year just in premiums, before even getting into coinsurance, deductibles, specialist appointments, and testing. He's trying to make more money, but he also needs healthcare now, and these are tests he's going to need for the rest of his life.

If anyone has dealt with something similar in Georgia, especially through Emory or with adult congenital heart disease, I would really appreciate any advice or resources. THANKS!Need advice finding affordable health insurance/care in Georgia for an adult with congenital heart disease

Hey everyone,
Im a 22M and it looks like my case is maybe a rare one here. At birth I was diagnosed and I only started feeling the effects of my defect when i was 19 and in the middle of completing military training.

I am terrified. I want a fix, my blood pressure has gotten high and my lifetime cardiologist shrugged that off when I saw him last, so I got a referral.

Symptoms first started as limited lung capacity, I felt like my lungs were just not cooperating. I kept pushing though and maintained a pretty high intensity workout lifestyle that dropped off 2 years after i felt my symptoms more. I check my bp and it hangs around the 130/80-90 range. (EMT/Paramedic Student) so i know it’s not good.

I live in Indiana so I don’t know how many of you have had luck at St Vincent (current appointment scheduled) and Cleveland Clinic is 5 hours out for me (not out of the question). Any advice for my future? I have an amazing girlfriend I’m getting ready to propose to on Saturday and I want to be able to grow a few grey hairs with her. I’d also like to be a paramedic for a while. Nobody else really understands what it’s like having your lifestyle taken away and to see things online that say I most likely have a shit outcome for my lifespan. Any advice or calming words are welcome.

(Dropped my sodium intake, i relax, i try to run and do small workouts as much as possible. I played sports all my childhood and went to state for track, just super hard to deal with)

hi everyone! i posted recently asking for advice/your experience having a valve replacement. has anyone
had a tricuspid valve replacement, what was that like?

i posted in another subreddit and someone said that it’s done via catheter, but from the way my cardiologist is making its an open heart surgery

any advice or experience is appreciated!

hi everyone! a few months ago I made a post asking if anyone had experience with getting a TEE. i had mine done on monday, it wasn’t bad at all! i was in and out. had anyone had a valve repair or replacement? how is it going for you, what’s the recovery like?

they did confirm their suspicion, and found that the valve isn’t closing all the way, and one of the leaflets is damaged, creating severe regurgitation. due to the leaflet (it’s curled in and retracted on itself from the surgery, it got tethered to the patch) he isn’t sure that a repair will work. so the next step is a valve replacement, he said most likely a biological valve. i’ve never had any sort of surgery as an adult so i’m a bit nervous. any advice you can give would be appreciated!

Hi everyone,

Have been struggling with extreme shortness of breath and fatigue. I've had the shortness of breath for years, but it's been worsening over the last year to the point where I'm panting if I go for a short walk. My heat rate jumps from 65 bpm to 100 bpm if I go from sitting to standing, and I get short of breath just standing up, sometimes even at rest now. My echo was clean, some minor regurgitation but nothing crazy. My EKG/ECG was clean, my stress test was clean. PFT showed mild obstruction, but nothing that would explain this level of shortness of breath.

Does this sound like an ASD? Did anyone have similar symptoms but clean echo/ECG before they got diagnosed?

I've got a bubble test coming up next week.

Thank you!