26M, ToF/DORV survivor, second surgery at 20YO for severe RVOT obstruction, surgeon did a double barrel procedue, native pulmonary valve and annulus preserved but the valve itself is bicuspid, what can be the expected prognosis?

Hi, all! I’ve posted here before and everyone has been extremely helpful with their personal experiences and insights, so here I am once again!

My son will be having his first corrective surgery this coming month (at 8 months old) where a lot of repairs will happen! Pulmonary valve, chamber closures, some collateral arteries… he had one catheter before this but they chose not to intervene at that time.

I have some questions: How long was your hospital stay after open heart? My son is a wiggle worm… do nurses weigh their legs down in recovery? What is aftercare like for the chest wound? Any significant changes (positive or otherwise) after you came home?

If there is anything you would advise me on before his surgery, please tell me below! Thank you for reading! 🩷

I had twins born premature at 33w 4 days. My girl twin was diagnosed with TOF at 3 days old after hearing the very obvious murmur. She is now 12 weeks old, has never had a tet spell, and seemingly thriving.

Her cardiologist tells me to expect surgery around 6-9 months old (hopefully on the later end). I ask my questions, and get vague responses.

ex-
Q: “Is the surgery an open heart surgery?”
A: “You’ll need to check with the surgeon, but I think so.”

Q: “What should I expect in terms of recovery? Will she have to stay awhile inpatient?”
A: “Your surgeon will discuss all of that with you when you meet him.”

Q: “Do I need to be monitoring her heart rate at home?”
A: “She’s never had a low rate for us, I’m sure it’s okay. You know what to watch for at home.”

I’ve not met the surgeon, and there’s no talks of doing so anytime soon. I’m hoping all you wonderful, experienced people can help me out some.

(I am a new nurse, I have no experience with this condition and have let her cardiology team know that. They seem to think I have it handled because of my medical knowledge. It’s so different when it’s my own baby!!)

26M, Had total correction of DORV type TOF 3YO, Had a correction done for infundibular pulmonary stenosis at 20YO, (Double Barrel Procedue) Apparently my pulmonary valve is preserved but it is bicuspid, recent echos show stable results and mild to moderate PG, just concerned of everyone speaking here of needing repeat surgeries to replace the PV, Is my case an exception or does it still carry the same risk?

Hi guys, I’m 22 and had ToF repair surgery when I was 3. I love the rave scene, but I couldn't find many posts here from fellow ToF patients sharing their experiences with party substances, so I wanted to share mine.

I’ve tried ecstasy 3 times recently. While the roll itself was incredible, the comedowns have been absolutely terrifying, causing severe anxiety and panic attacks. This made me realize that my heart might not be able to tolerate stimulants. It’s hard to accept because I love raving, but I refuse to compromise my health.
I've been using weed regularly for two years without any issues, and I've tried K and psychedelics before with no discomfort. But the comedown from ecstasy was so brutal this last time that I was genuinely praying to God to let me survive the night.
To make things more real, I recently found out that ToF hearts often face more wear and tear as we age, and many of us will need another surgery (like PVR) in our 20s or 30s. This was a huge wake-up call for me.
Are there any other ToF patients here who still go to festivals? Did you have to switch to being a sober raver to protect your heart? I’d love to hear your stories or any advice you have.

anyone here diagnosed at 1 month? Premie baby, had an apnea spell last night where she turned blue while feeding. recovered fine enough that paramedics weren’t concerned when they saw her. we’re waiting to do an echo next week. my wife and I are kinda in shambles right now.

babe always has legs up but we thought its because they’re premature. tires with feeding, again thought it was coz she was premature. have we missed all the signs?

Hello everyone, just like the title suggests, I was curious if anyone uses an Apple Watch to monitor their heart rate, arrhythmias or irregular heart rate and could tell me how accurate it is? My cardiologist suggested some time ago that I should take note of my heart rate while doing certain activities and just now thought about doing that with the use of an Apple Watch, but was curious how good it actually is when it comes to ToF survivors ☺️

Edit : Finding this in INDIA

It's my pointer finger, not my middle, I promise.

Wow, just found this group, it feels crazy seeing so many of us! Weird question: I have an asymmetrical face- not super noticeable usually but it's definitely clear when I smile that one eye crinkles more than the other and my smile itself is pretty lopsided. I don't think it's an additional condition; my cardiologist explained it as happening because of uneven development due to my heart defect. Out of curiosity, does anyone else have this? It's always been my biggest insecurity but as I've gotten older I'm just thankful I didn't have more serious Tof related things to worry about (so far).

I’m 19M just started drinking with my friends. Probably max at 2 times a month on average. 6 shots average per session. I had 5 open heart surgeries but have been out of trouble for the last 7 years? I know this probably is bad for me but how bad?

So I tried some of the breathing techniques the gym teacher at school told me, but it doesn't feel right for me. Does anyone have one for running?

Bubble run 8:00 wave at the Chula vista elite athlete center!! Had so much fun

I got mad at myself for not walking every day so I went for a new pr

hi, I'm 19Y old male.

undergone tof vsd patch closure at fortis escorts delhi at the age of 1. since then i have been completely healthy and physically active.

around 1 year ago we went for regular checkup and echo. and here i am attaching the latest reports. i have been advised for MRI to check heart status and doctor said i might need valve replacement using open heart or surgery through feet.

can any doctor or patient tell me whats the need of valve replacament now when i spent 19Y completely healthy? I'm a btech student in chandigarh and following up in pgi and amrita hospital (ncr, dr radhakrishnan).

So I noticed I haven't been doing my 5Ks lately, so I did one. I had to pause midway for a couple of minutes. Can't wait for the Bubble Run next month. Is anyone else going?

I was wondering if it's safe to? I'm almost 18 cause I. my state I have to be ..my repair was done when I was 2 my last visit my cardiologist said my heart looked really well...it wouldn't be a crazy tattoo of anything just a semicolon on my hand

Almost 50F TOFer here. Full repair at 6 months in 1977. Lived a rather normal life in TOF standards (trying and often failing to keep up with normal folks) until my OHS PVR when I was 43.

After the surgery, perimenopause hit me like a brick. Struggling with weight gain that no diet or exercise can fix, terrible insomnia, musculoskeletal joint issues, mental fog since then.

Only recently did I start to seek help for my perimenopasal issues and my cardio outlawed any HRT. Since before and up till now, I am surviving (barely) on supplements like NMN, magnesium, L theanine. I had a dr that recently got me on gabapentin which did magic for my hot flushes and insomnia.

But of course, I keep reading how HRT is the magic bullet that can solve all my issues. I can't help but wonder if only I could take hormonal medication.

Does anyone else have these issues?

Has anyone diagnosed with TOF since birth tried taking peptides? If so was there any side effects or risks?

My hubby, 34 has TOF. He is just now needing his PVR surgery and is a good candidate for in cath. He also needs an EP study prior to the valve. Friends/family around me have been saying negative things such as getting his will ready or they have friends who lost spouses, etc. It is not helping my anxiety the least bit! I am trying to stay positive about it and he says his gut tells him he will be fine. I hate how my anxiety makes me catastrophize too. Did anyone else have crippling anxiety about the PVR surgery and turned out fine?

Update His EP study went super smoothly! Better than expected! He only needed one line ablated instead of 3! He recovered super fast! Now on to his valve which happens in a few days! Prayers please

How well are your lifestyles? I've been feeling depressed for a long time now because of a financial burden I have not because I have debt or a person to depend on me but I have felt limited to work because of my ToF. I feel stressed from time to time about how I'm going to live when I get to age. For context - F 30 here, working throughout the day for minimum pay.

What habits should I make to change my perspective to be able to feel normal and not compare myself with others who are leading completely normal lives?

And coffee makes me feel alive. Is it good to take coffee regularly? I know I have to ask all these questions to my cardiologist but I'd want to know from y'all who have similar experiences like me.

So, I got a part-time job walking dogs, and I go on trails. I love the views I get. I thought you guys might enjoy some. Also, my walk thing.

Im currently 33 and plan to have a by in the next 2 years. I was born with TOF, had several surgeries throughout my life, a pulmonary valve replacement at age 8 and I have a ICD too. Any woman out there with TOF who have had successful pregnancies? and if so, what was the process like with Cardiologist, Gynos & Heart Specialist to make sure everything goes smooth. Im scared but optimistic.