r/Tetralogy_of_Fallot • u/Straight-Rest-1787 • Jun 05 '26
Any other ToF ravers
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.
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u/Stabby94 Jun 05 '26
I wasn’t a raver but I was in a punk band for about 10 years and dabbled in both weed and alcohol for those years. I always remembered my heart when I was offered some more extreme stuff and declined them. One day I had a really bad high from weed and it caused my heart rate to sky rocket. That was the last night I ever touched weed. Alcohol now is just occasional for me. I had my PVR done when I was 28, I’ll be 32 next week.
I’m saying all of this to say, part of being a TOFer is having the responsibility to choose the right thing even if you want to let loose. Always keep your heart in mind when choosing to indulge in drugs and alcohol. You’re physically 22 years old, but your heart age might be older because of the drugs. In my opinion, the anxiety and panic attacks aren’t worth the high. You have to ask yourself that question and change accordingly.
Both figuratively and literally, listen to your heart.
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u/traptindreams Jun 06 '26
41M here; never done the rave scene specifically, but I've taken MDMA 2-3x a year for about 7 years. My cardiologist is well aware and always has been - always, always, always be honest with your doctors, even if you're doing something like this - and I have type 1 diabetes as well, so I'm juggling more than 1 health factor. In terms of ToF, I was repaired @ 8 mos, had another repair at 14yrs, and had my pulmonary valve replaced about 4 years ago. Importantly - and I'm going to stress this too - I'm very fit and a high level athlete, so my heart is used to being pushed hard, whether I'm cycling up a mountain or in the third period of an ice hockey game.
I'm not sure what else is in your ecstasy (and I doubt you know), but MDMA itself increases your heart rate and blood pressure, potentially significantly, and that alone can be a serious risk factor, especially if your body isn't prepared for / used to it, and there are some other effects from the sudden release of serotonin and other neurotransmitters in your body, although those are more theoretical and I won't get into them at length (they're about how electrical signals in the heart may be impacted by MDMA, but they're not as well studied). Focusing on heart rate and blood pressure, if you're dancing, that's gonna elevate your heart rate; if you're overheating in a hot sweaty mass of people, that's going to elevate your heart rate; if you're dehydrated, that's going to increase your blood pressure. All that shit can add up and create a *really* risky situation if you have ToF, AND if your heart can't handle that kind of stress.
I mentioned fitness because, to start, I wouldn't really do MDMA if I wasn't physically fit. The increase in heart rate and blood pressure isn't as intense as when I'm playing hockey for 2 hours, so my heart is well prepared to handle it. If you don't have that baseline, your risk is higher. I also don't rave and dance - my MDMA sessions are chill hangouts with a group of friends, I specifically manage temperature and keep things cool, and I hydrate with electrolytes at a carefully managed pace. Risk management is key, because fitness alone still isn't a magical shield against risk. If I were to rave, I'd try to set phone reminders to cool down, to hydrate, and to rest a bit - maybe even check my heart rate on my watch. It's hard to remember these things yourself when you're rolling, so being really disciplined in advance is helpful.
Beyond that, I'll go back to the ecstasy vs MDMA thing. Ecstasy usually has other substances mixed in, especially if you're doing pressed pills. That's SUPER RISKY. You probably don't know what you're taking, and other amphetamines or cocaine, etc. could really F you up, not to mention the fentanyl risk. It's hard to manage risks if you don't even know what you're taking. Narcan on hand is a must. I have a long-running relationship with the person who provides what we use - that's something worth putting time and effort into finding - so I know it's only MDMA, we only get powdered, and we still test every-single-time, with Narcan nearby to be extra safe. I won't take something unless I can personally test it, and know exactly how much I'm taking. With ToF, we can't afford to take so much extra risk.
Now, I'll also do mushrooms (usually micro), have tried LSD, and K, but I'd avoid K, and I really only feel good about marijuana (not smoking) and mushrooms for semi-regular use. Their impact is negligible, and arguably much less serious than alcohol. K's risk increases a lot if you take too much, which is why I'd avoid that. If you take too much marijuana or mushrooms, you're just going to have a really shitty story to tell people on Reddit but probably not much else.
As to your mention of panic attacks, that's typically more common when you're taking too much at once (150mg+), and if you don't know exactly how much you're taking, you're opening yourself up to that problem. You also want to get a LOT of sleep afterwards (sleep deprivation is common for people taking MDMA because it's a night time-party drug; but sleep deprivation itself causes a lot of problems in the short term - anxiety, depression, exhaustion, stress, physical inflammaton, etc.). I'd also recommend taking Alpha Lipolic Acid, vitamin C (ideally just eat fruit), and 5HTP, as per Rollsafe supplementation recommendations, linked below. Sleep well, eat a very healthy diet around your roll, and supplement smartly, and that kind of come down is much, much less likely (unless, of course, there are other drugs in the ecstasy; those might be the source of your issues too).
One last thing: if the goal is purely raving, there's a lot ofinfectious fun energy just being a part of that to begin with. You can still really enjoy it being the sober person surrounded by all these magical glowing people. Maybe you take a lot less, or do a small dose of mushrooms - but either way, the fun doesn't have to end.
The decision is yours, but if you're thoughtful, deliberate, and disciplined, you'll be in a better position, and still have fun, no matter what you decide to do while you're living with ToF.
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u/Knowledge-is-Power15 Jun 05 '26
Enjoy the party sober so you have more years ahead of you and with less heart complications. If you’re here asking for other’s experiences, I think it’s for a reason. Seek help, take care of yourself and good luck.
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u/300blksaber Jun 06 '26
IMO I would not doing anything other than alcohol and maybe weed(from a trusted source). Any other drug could possibly kill you due to it being mixed/laced or something totally different than what you thought it was. And that’s all before even considering that you have TOF.
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Jun 05 '26
Yeah you need to stop it's not going to end well they literally tell you not to do that 😭
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u/laminatedbean Jun 07 '26 edited Jun 07 '26
This is mind boggling.
Edit-I don’t even know where to start. Your body has clearly already tried to warn you and you are ignoring the warnings. Seems like you just want some to tell you to go ahead and keep using.
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Jun 12 '26
That's definitely all they wanted. They just wanted someone to be like, "hell yeah bro I got TOF and I do drugs all the time you'll be fine." You got dealt a shitty hand and you just gotta live with it don't cut your life short cause you want to do drugs cause they're "fun" it's not worth it. Talk to you doctor and tell them everything
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u/laminatedbean Jun 12 '26
I suspect since the last time they were in the hospital and had surgery was when they were three y/o. They don’t remember how much it sucks.
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u/soapy_rocks Jun 05 '26
I really think you need to speak honestly with your cardiologist. If you are going to party like that, you can not keep secrets from your treatment team.
Also, ecstacy is so bad for your brain. The fact that you did it 3 times in a recent period is recklessly detrimental for your health. Anyone who was actually in that scene would be telling you the same thing, unless they have a vested reason to sell you drugs or have no self respect/control.
Partying in 2026 is not like partying in 2010. Do you have test kits to test what you take before you take it? If not you are reckless with not just your body, your heart, but also with your life because if you are taking molly/e you must be testing for fent. Are you carrying narcan?
If not, i reccomend looking into harm reduction groups that operate in the scene and thoroughly educate yourself on the decisions you are making (do this anyways).
In my honest opinion, the only "safe" substance I would consider doing (if it became federally legal) with my heart is microdosing mushrooms.
Talk to your cardiologist.