r/AdultCHD

does anyone have any experience doing a TEE for valve regurgitation? i have right sided heart enlargement and they think it might be due to severe regurgitation, (and it’ll have to wait at least six months because they incidentally found a paratracheal and lung mass and he doesn’t want to do it while the mass is there) and want to do a TEE to confirm.
i’ve never done something like this, at least not as an adult. if anyone has any advice it would be appreciated!

also, if anyone has any subreddit recommendations for subreddits that might be able to help with understanding paratracheal or lung mass/biopsy procedures let me know!

thank you!

Hello!

I'm just reaching out for support and good vibes.

I had open heart surgery when I was a baby and another heart surgery at 2.

I'm now 35, no symptoms, but I'm slated to get open heart surgery in the next few months due to building pressure in my heart due to a parachute valve.

To say I'm freaking out is an understatement.

I spent all day in the hospital Monday for a heart cath.

I spent 2 Mondays ago doing a stress test and CT scan.

I'm just overwhelmed and traumatized. Idk how many more pokes I can take from IVs and blood draws.

Good things: I have a really good support system and I have an intake for therapy on Tuesday.

I'm just looking for words of encouragement right now.

Thanks!

Hello everyone! I'm a 24yr old with PA/PS (specifically pulmonary artery stenosis). At 8 months old I had a coarctation of the aorta, a stent put in when I was 11/12yrs old and I am on aspirin for the rest of my life.

I recently had a check up with my adulthood heart surgeon to which I finally asked "Am I allowed tattoos?" His words were while I can't stop you because you're an adult, I strongly don't recommend it and explained why. But I would still love to try and get a tattoo. And I'm thinking what if it was a small tattoo from a reputable artist? I'd to love to hear advice from others on this because as much as I'd like to respect my heart surgeon, at the same time it's been a life long dream of mine to experience a tattoo.

I had open heart surgery on April 15th to correct a small VSD and newly discovered Double Chambered Right Ventricle (DCRV). This has by far been the hardest thing I've ever faced, and I'm so grateful to be here going through it. This group was paramount in my preparation for surgery and helped me feel educated and ready. There were so many little tips and insights in posts and comments that I have really carried with me. So thank you.

My surgery went well. My surgeon was amazed that I had made it 32 years without OHS due to the severity of my obstruction. They performed a ventriculotomy and cut 4 centimeters into my right ventricle. They removed the obstructing muscle, repaired my VSD, and sewed me back together using a patch. I woke up with the breathing tube still in and vividly remember its removal. It was scary, but I knew to expect that my hands would be tied to the bed and the nurse would instruct me to cough (thank you reddit). My mom and dad and brother were there holding my hands, my nurse kept telling me I was safe, and calling me a "sweet girl." That really helped. I could hear everything, and the soothing voices of my family and that angel of a nurse made waking up so much easier.

My pain was incredibly well-managed. The greatest shock were the tubes and the new limitations of my body. I was worried about nausea due to past reactions to anesthesia, but they preemptively treated that. I had an incredible care team and very present family. There was almost always someone visiting me in the ICU, holding my hand or resting with me. Holding hands became a form of contact and communication. I can't explain it, but it was the most beautiful and moving thing to me. My brother fed me ice chips, my dad brushed my hair, my mom prayed for me, my Auntie kissed my forehead, my nana watched over me... The intimacies of recovery are beautiful. Terrifying, but beautiful.

I stayed in the hospital for 5 days. By discharge day I felt ready but anxious. Going home was hard. So much grief hit me. Because of my congenital heart defects, my heart had an incredible loud murmur and palpable thrill. It was something I had loved about my heart. People could hear it with their ear hovering above my chest. It sounded like the ocean, like music. When my heart was repaired, the song went away. My heart became very quiet. In fact, I couldn't bring myself to listen to it for weeks because the grief was too much. It's strange to hold both grief and gratitude. (For history, I have adjustment disorder and so I tend to grieve during times of change, even positive changes).

I did well at home for a few days, but slowly my breathing worsened, my heart rate increased, I had a terrible cough, nausea, and my body was weakening. I called my surgery team and they prescribed me an inhaler and a chest X-ray. I kept putting it off, but a persistent PA kept calling me and urged me to get the scan. As soon as the results came in, she called me and told me to go to the ER. At the ER they did a CT scan and found fluid around my heart and in both lungs (pericardial effusion and pleural effusion). They ambulanced me to the hospital and admitted me.

It took them three days to figure out how to treat the fluid accumulation. When fluid forms around your heart, you can't just treat it with diuretics. And they were unable to safely perform a pericardiocentesis (needle draw) without risking damage to my other organs. After much debate and back and forth and anxiety then relief, they finally announced that they would need to do a second surgery to safely drain the fluid. They wheeled me back to the OR an hour later.

They created a "pericardial window" by reopening the very bottom of my sternum and extending my incision by a couple inches. This created space for them to insert tubes and needles to safely drain the fluid from my heart and right lung. They removed a liter of fluid from the initial drain. They also created a drain in my pericardium by removing a 1cm square so that fluid will flow into my lung instead of collecting around my heart. This is safer, as fluid in the lung can be treated much easier than the heart.

I stayed in the hospital for another 6 days while they monitored my fluid output and vitals. I later learned that I was in the early stages of cardiac tamponade. This would have been fatal without timely intervention. I am so so grateful to that persistent PA. I also learned that due to my heart defects, my heart was used to being under high amounts of pressure. These high pressures caused my right ventricle to thicken and slightly stiffen. My right ventricle was able to withstand the pressures from the fluid without collapsing, potentially saving my life. Thank you, old heart ❤️

They released me on diuretics and anti-inflammatories. All of my symptoms went away as soon as the fluid was drained. My breathing has gotten stronger, going from 700 on the spirometer to 1500. I have significantly increased health and death anxiety that I am processing and will likely forever face. This unexpected complication increases my risk of developing a progressive and constrictive heart condition. However it is rare, and I am hopeful that my heart will continue to strengthen and relax.

I am now one month post-op from OHS, and two weeks post-op from my pericardial window. Recovery feels like a longer road than I ever could have imagined. But I'm here! I'm alive. This shit is so hard, but I'm doing it. One step at a time.

If you're heading into surgery, prepare yourself as best you can. Hold your heart, hold hands, hold yourself. Do whatever you can to make sure you feel safe at home and in your body.

There's so much more to say, but I'll leave it there. Thank you for the space r/AdultCHD.

I’m 22 m looking for friends I have HLHS hmu

Had unroofing and reimplantation of my anamolous right coronary artery. I'm feeling pretty good! Down to Tylenol only for pain and it's manageable.

The worst part is sleeping because I'm a side sleeper.

My doctor is recommending that I have a Reveal implanted heart monitor put in. For those of you who have one, what is your opinion of it? Also, was yours implanted in your Dr office or in a hospital facility? Thanks in advance.

Has anyone else in the CHD community really struggled mentally after surgery? I’ve been dealing with a lot of anxiety, fear about my heart, hyperfixating on symptoms/palpitations, and honestly depression too since my surgery 2 years ago. It’s been hard to move past everything and some days I feel stuck thinking about my heart all day.

Did anyone end up taking medication for anxiety or depression, and did it help? I’m already in two types of therapy

Hi everyone! I’ve posted on here before. I was born with three holes in my heart, an ASVSD, ASD, and VSD as well as an aberrant right subclavian artery. I had open heart surgery at a couple months old to repair the ASVSD, and ASD. The VSD was left alone due to the 50% chance it would close on its own. It did. Over the pass few years i’ve become increasingly exhausted, with ongoing palpitations, shortness of breath and lightheadedness. I really didn’t expect for them to find anything, it was more for peace of mind. Instead, they found an ASD, “severe tricuspid regurgitation with an eccentric jet wrapping around the right atrium”, triscupid prolapse, and a mass in my trachea, or in the mediastinum. I’m at a loss for words and how to feel. I’ve been waiting on the ct that was meant to take a closer look at the mass. i should be starting medication soon for the regurgitation. With the ARSA, it’s starting to sound like surgery to remove the mass (and it depends on what it is) isn’t an option. I have a very physical job, and I don’t want to stop living my life but it’s so frustrating to hear my doctor say “after 20 years of your heart working the way it wasn’t supposed to it starts to decompensate”. Has anyone been through something similar? Any advice?

I wouldn’t recommend reading this if you’re about to have surgery. I’m not trying to scare people, this is just my experience.

I had ASD closure in march of this year and I hate that I did. For me, all it’s done is made me feel worse and left me physically I guess disabled? The catheter used has left me with neuralgia which is a possible side effect after this type of surgery. Pretty much the nerve in my right leg is always misfiring which provides me with intense pain sitting, standing, walking, resting, everything (think when you hit your funny bone and your arm has that white hot shot of pain, but every time you move). I’ve tried multiple different meds and my dr is giving up on me and just telling me to get over it. Not only that, but I’ve almost passed out multiple times due to standing up and my vision going dark and crazy headspins. This never happened before the surgery but it happens at least 3-5 times daily now. My dr does not believe me and did a blood pressure test and went “oh well nothing happened” - that’s because it doesn’t happen every time I get up. I’m so angry and I’m so upset. I haven’t been to work since my surgery, I’m gaining weight due to lack of exercise… I’m very upset. Has anyone else dealt with neuralgia after surgery or dark vision?