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?

Hey PE community. I am 44 a former D1 college athlete.
My Haller Index is 3.52 — But surgery was never a real option for me due to risk from my open heart surgery injuries.

I was born with Holt-Oram Syndrome and had open heart surgery at age 3 — median sternotomy, ASD closure, pulmonary valve repair. I still have sternal wires in my chest from that surgery. Three pacemakers. A cardiac ablation. My pectus developed as a direct result of that 1985 operation, and going back in was deemed too dangerous given everything already in there.

My pulmonary function tests show FVC at 82% predicted — I’m working with roughly 70% of normal lung capacity. The restriction is real and measurable.

So no Nuss. No Ravitch. Just learning to perform in this chest.

What I did instead was find the edges of what this body could actually do. I played Division 1 baseball as a catcher. Ran over 40 6-minute miles, Competed in bodybuilding at 42 years old. I practice Wim Hof breathwork daily and have nearly 1,000 sessions logged.

I made a video about all of it and I’m hoping it gives you all hope as well. It took me over 25 years to take my shirt off but now I’m proud to and hope this message and video gives you hope as well.

Ken

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.

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.

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 it sound, it’s an open heart surgery.

any advice or experience is appreciated!

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

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!

I found out I have ASD after suffering constant life altering symptoms, I used to be an athlete and had to stop, I cant even work and am legally disabled due to syncope and hypotension, general constant fatigue and dizziness. I always had heart and lung pain that I was told was just heart burn. My cardiologist found the hole in my heart during a test, which recreated the pain id been feeling when oxygen was pumped into my heart. After this test the pain got worse significantly. I was diagnosed with the ASD and I was optimistic that it would be fixed easily. My cardiologist then told me that it doesn't seem to be affecting anything due to its size, and that i should basically force myself to exercise like I used to to improve my symptoms.

I was frustrated but tried to believe her. Ever since the air pump test, my heart pain has increased significantly more, sometimes i cant talk, exhale fully or inhale fully, even laughing, moving certain ways causes the pain to flare up in my heart, and sometimes my lungs. Sometimes it hits me randomly sharper and more intense, to where i cant even move. When I was at college, i was 30 minutes late to my class because when I stood up to leave the cafeteria i was suddenly hit with heart pain that made me clutch my heart and fall over, I couldnt even sit up without it getting stronger. This pain happens constantly. I'm scared and feel ignored by my cardiologist. My primary doctor is trying to get the MRI scan that my Cardiologist did and for some reason its not even on my medical record?

Other than that I need to wait another month before I can see my doctor again. I was curious what you guys think of this, since I only found out I have this in March.

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.