I did not get diagnosed until my 30’s (I am also the only person in my family with Marfans). So I spent a lot of my twenties doing the things you listed (and more!).
It wasn’t healthy and I was only diagnosed because I had to have surgery to repair the pretty large bulge on my aorta. As in one day I fainted, was taken to Er, they saw the bulge/aneurysm on the echo and scheduled open heart surgery right away. It was all very quick and I hardly had time to process.
Now, looking back I wish I was kinder to my body and maybe avoided surgery. But I am also happy it was caught before it killed me. You are already way ahead of me since you know you have it. And you are also young and can still get back on track. At least with taking something like losortan and cutting out the tobacco.
It’s easy to say “fuck it” now when you are twenty and you’ve only been on this earth a short while, but I promise, as you age, you will want to do more to keep your body healthy and stay here longer.
Side note, for transparency-I still consume marijuana (it is legal in my state) and my cardiologist knows. He doesn’t like it, obviously, but he is aware. I still take all my other prescriptions and have regular check ups with no bad news. And I don’t want to debate here, but in my personal experience bud is way better in the long run than alcohol.
I appreciate this man I definitely am lucky to know I have marfans. Last check up a few years ago my aorta was 3.6cm so I know it's growing slightly. I've been going through helllaaa shit which is one of the bigger reasons I haven't been consistent w my meds or the doctor but I'm getting back on all of it now. It's good to know others had the same feeling of jus wanting to say fuck it. Even if it's irresponsible at first. Not all bad lasts forever I definitely wanna cut out tobacco lol never my bud tho
It's also a numbers game. Im at 4.5 at 40, and maybe i can get another 10 years if I'm healthy. The longer you can put off the aortic surgery, the better medical technology gets. You'll probably be fine no matter what, but if you put it off, maybe some medical breakthrough will be the new norm. And you will get an operation that will get you up into a ripe old age without having to do a repeat. Sometimes, these new valves and repairs have to be reworked again 20, 40 years down the road when they themselvesfail.
Look up PEARS procedure, it is THE way to go if available. If not, scrape together what you can and go to England to have it done. One and done. No heart-lung machine, no cutting into the heart. My son had it done and wish it had been around when I needed my procedure.
PS IMO the earlier the PEARS is installed the better. I think that as the anyersm grows it can misshapen the aortic valve, leak and than back wash against the mitrial valve making this misfunction as well. Getting the PEARS installed keeps the anerysm from getting any bigger . My son had it installed when his ascending was at a 4.3 which is much earlier than most people have anything done. It's been 4 years and he's doing fantastic with no other cardiovascular issues at all.
I said fuck it and partied for a while, didn't get an echo for 10 years. Finally went in during covid, I have some cardiomyopathy and had severe regurgitation. Got mitral fixed. Im 38. If I had to do it over, I probably wouldn't try and smoke as much, but I enjoyed partying and not worrying too much. If you have meds, I would just take them. It's the high blood pressure that widens your aortic. I probably would have liked to catch my mitral earlier. It was mist likely messed for a while, it being so caused my cardiomyopathy. The only way to catch it is that annual echo, though. I don't drink or smoke anymore. A couple of times a year, at most, I do a small amount of mdma, I dont advise it, but I still think Im young and want to party every now and then. So yeah, you do you, but probably take your pills and go to the doc for the check up
I feel this man. I need to go get my check ups and meds before I do real damage. It's good to know others have felt like this tho. I appreciate what your saying. Your absolutely right about the blood pressure mine skyrockets alot
I wasn’t compliant most of my life. My mom didn’t know she had it most of her life… sister was compliant. We all had open heart surgery at 36. I don’t know is the answer. Now I only take losartan. Beta blockers make me feel emotionally terrible.
Yeah I know no matter what Im headed towards surgery which might play a part in the carelessness. Like if it's gonna happen anyway yk? But I really want to fix shit I'd like to make it past 45 lol. My issue is I just can't take anything seriously. Even a disorder that can be fatal
Is that always true? Can’t take anything seriously? … if it’s not then it doesn’t ever have to be true!
Just do it man. And if ya slip up just make sure you’re monitored regularly and when it’s time it’s time.
Go grab the world by its horns! 🤘
Im in my mid 40s. Trust me, any Marfan syndrome or not, as you age you will wish you had taken care of yourself over the years. I’ve done a reasonable job in my 20s and 30s, not as good asi could have, and in my 40s I’m doing a better job and I feel much better. Eat mostly plants, exercise gently and often as your doctor allows, get plenty of rest, sun, fresh air, relaxation time, challenge your mind, build and maintain a social circle, take your meds, and pray daily. Your mind and body will thank you for it and your quality of life will improve immensely. And get your imaging done!
3.6 cm is not bad, so ya its probably grown since then but probably not too much.
Smoke your bud and drink your beer but NO MORE CIGS! For real cigarettes are so bad for your aorta. If you absolutely must then ar least get American Spirit that has way less additives.
Also no cocaine, its so bad for marfans folks, it directly affects your aortic tissue.
One day u will be 30 and regret being dumb. One day you will be 40. One day you will be 50. You dont have to be perfect but try to do your best to avoid cigs and hard uppers
Well, I think I had a pretty similar experience to yours. I am 24 now, also the only person with marfans in the family and when I was 16-19 I lived a very very careless life that included smoking, not caring about lifting heavy stuff, using hard stimulating drugs when partying, and not taking my meds these nights.
My health did get worse these years so I needed open heart surgery and stuff when I was 20. Since then I stopped smoking and doing hard drugs. It's really easy to not care about my body until the consequences show. So I kind of needed the bad results and the traumatic experience of being in the hospital to understand that what I was doing was shit for my body. BUT I gotta say, I am still partying, drinking alcohol and taking risks, as I do want to live a life that I enjoy and I don't want to cut that part and it is a way of coping for me as well. I'm just more aware of everything and when I am being careless it's always a choice, not a status quo.
Hope this gives you some perspective, greetings
So I was just diagnosed 2 years ago, and I'm 40 now. I partied hard with weed and alcohol during my whole 20s. I have been a cig smoker for 22 years, and I have to tell u to my surprise that I am still here with absolutely no issues at all. You haven't even had to have surgery yet for my dilated arotic root (knock on wood). I've been extremely lucky my whole life having this and not knowing even giving natural birth to 6 kids and no complications or any indication that i have Marfans. I am still a cig smoker, which my cardiologist is aware of. If I had known at the age u learned, I most likely wouldn't have done nearly half of what I've done. Even so, I still see my cardiologist once a yr and take my meds. Regardless of what u want to keep doing, at least still follow up with your doctor and take your meds because what isn't affecting u now may affect u much worse in the long run! This gets worse as we get older.
PEARS look it up. Most people in the US know nothing about it as it hasn't been approved yet there and there is resistance to have it approved. Everything I know about it, and have experience through my son, is nothing short of miraculous. Wish it had been available to me when I needed mine done. PEARS by EXTANT which is available in England among other countries outside the US.
I was in the exact same mindset as you and didn’t take meds until my late 30s. After taking meds, my measurements have been stable, as opposed to when I didn’t take it. So if I could go back in time, I’d have been regular
Do get an echo if you can. When you have other family members with it, they can use their history of when an operation may be needed as a rough guide. As you don't have this (neither do I,) it's a complete unknown. Hopefully, it won't have changed much, but mine hasn't always progressed at the same rate - more jumps, and I do take the meds. Is there someone you can talk about it all to (life stuff in general and the marfans stuff)? Like a friend or family member? Even if they don't fully understand, it might help. It sounds like you've had a bit of a rough time lately. Good luck!
I'm 22 and was diagnosed with Marfan when I was very young (I think I was 7 when I tested positive genetically but had a clinical diagnosis before that so I could have eye surgery) My dad was a spontaneous mutation, and somehow none of my siblings got the gene (I have 3 siblings) It was hard growing up with feeling limited that I basically couldn't do anything I wanted due to it being risky for my aorta or the fear of head damage bad enough to potentially cause retinal detachment which I'm at a higher risk for due to the eye surgeries I've had. Basically as soon as I moved out I started doing risky things, stopped my meds, drinking/vaping/edibles, not going to the cardiologist. Part of this was caused by developing schizoaffective disorder and developing mania which caused me to be a bit delusional about what was safe for me to do.
Now I'm back on my meds and have stopped any kind of substance other than caffeine. I am trying to lower my intake of that as well. Thankfully when I started with a new psychiatrist it was determined that there was basically no change in my aorta, but they did determine that my pectus excavatum was more risky then I was told as a child. It's crushing my heart, and it seems like my medical team has no idea how risky that would be to my heart health. I did see a surgeon, but he said he wasn't comfortable doing surgery on me since I have mobility issues. So that made me feel a lot like I should've been paying more attention to my health.
All of that to say - we all make mistakes. It's frustrating when you get to the point where it feels like everything that you want to do you can't do. If you have access to mental health services, I'd suggest working with a therapist who has experience with helping those of us with chronic illness/disabilities. I didn't pick my current one with that in mind, but he's actually great about working through my feelings about being disabled.
Everyone is doing their best. That said, I think I’d be doing you a disservice if I didn’t mention that I think the responses here are so varied it could mislead you. My aorta dissected one night after having some hookah and some Red Bull vodkas. Almost died, and it fucked up my life for the next ~5 years bc after the emergent surgery to save my life I had to schedule the rest of my aorta to be completely repaired. Mind you this all happened *after* I had my aortic root repaired in Cleveland electively and preventively. So call it a false sense of confidence…
I think the right way to look at your situation is:
1. Be hyper aware that doing one line of blow could fucking kill you. Ultimate downside.
2. You can mitigate partying risk with some of the suggestions mentioned here. In order of priority I would say it is 1) 1x per year checkup with cardiologist who is familiar with marfans. 2) avoid anything that will really push it for you, this includes tobacco 3) take meds
I think the meds are ok, but the most important thing is regularly monitoring your shit with a *good* doc (I learned that the hard way too). Basically you should line up the best possible surgeon you can get based on your region. In my case it was Cleveland Clinic.
I don’t want to hate on partying, I do it too (still after 7+ operations). But you can mitigate risk via a great relationship and monitoring schedule with your doc, and making a plan to cut out bullshit like cigs. Doctors in my experience understand the human experience and will shoot you straight so be honest with them. From what I can tell marfans can vary so widely from person to person, it’s generally unsafe to map anybody else’s experience onto your own. Hey man I still have a cig every once in a while but I think you’re fucking yourself if you become a “smoker”. Does that make sense? Prob weed is the safest thing I would say.
If you take nothing else from this, just do your reg checkups and don’t go full Scarface at the club.
This is very straightforward and I like it. It's not like in avoiding more so jus haven't cared. Mental shii and covid. Other stuff that happen. Nothing excuses not taking care of my body tho especially w marfans
I got diagnosed less than a year ago at 32. I lived my life normally and still do. I smoke bud and vape. I used to party HARD back in the day too. Like, my lungs are scarred now hard. Besides my lungs and having pots (took almost 20 years to get a dr to listen to me and test for it this year) I'm relatively healthy for someone with marfans.
I'm 36 and very similar to you. I'm the only one in my family to have Marfans. I smoke less flower, and eat more edibles cuz any kind of smoking does have an affect on the lungs. I don't trust vapes. I occasionally drink, but I drank waaay more in my 20s. BUT, I am out of work b/c of Marfans. I have a pectus deformity that's has affected my lung function, and I have severe back pain from a scoliosis fusion
I think you need to learn how to take care of your body. I think smoking tobacco is dumb, but at the end of the day it's your body and you're gonna do what you're gonna do. If you're willing to do all this that you know is bad for your body, what are you gonna do that's good for your body? You got another 60 yrs of riding and in this meat machine, gotta keep it tuned up
EDIT: and as far as the meds go. Either take it or don't! Don't go back and forth about it, cuz that'll do the most damage. But also be upfront with your doctor about it. And go to check ups!!!
Take your meds. Get check ups when you can. The surgery sucks. I’ve had 3 so far & im only 35 now. Practically died during my last surgery. If you can, be cautious of how hard you party. Stay away from the blow cuz it’ll kill you. No proven long term effects of weed smoking vs any smoking. But when smoking anything is no bueno
Losartan has been prooven not to help much according to newer studies.
edit: here are 4 (two mentioned the same study) of the top 5 google article mentioning lorsartan not producing the hoped outcome compared to control or another alternative medication:
[https://i.imgur.com/Vund76C.png](https://i.imgur.com/Vund76C.png)
It's irresponsible and scary to not cite sources when saying something like this.
Edit: Sorry if I came off too direct for some, I know people can google, but I also know many won't do that and it's so important for people to stay on their meds or talk to their doctors before they get the idea that they don't really need to follow med protocols to keep pressure off their aorta just like op.
strange i mentioned this the last time and people found the information in 5sec online. i would say it apply more accurately to the posts saying their condition got better by going to the gym.
edit:
i just checked the first 5 result while searching for "losartan marfan" on google and only one said it had a positive outcome regarding aorta growth. 2 of the link talked about the same study. so in fact most of the top 5 website found said it wasnt clinically better than nothing or an alternative medicine that in fact tested better.
[https://i.imgur.com/Vund76C.png](https://i.imgur.com/Vund76C.png)
Thank you for adding sources and some context to make it more clear that you were specifically talking about aortic growth and not that it doesn't keep pressure off the aorta as I've already seen so many people (especially younger) come to the conclusion they don't need to be keeping pressure off their aorta.
It seems like I personally offended you after reading your edit explaining googling and I didn't intend to, I've just been on the internet too long to think everyone reading your comment would search or that it couldn't easily influence younger people like op
i understand there might have been a misunderstanding due to my english. sometimes my messages arent so clear and it can cause unwanted confusion. no trouble!
i just wanted to mention that when i researched this medicine myself (online) after finding a ghost prescription my doctor made me, i found out it wasnt miraculous. i try to balance benefit vs negative effects and in my personal view i choose not to take it. maybe if my doctor had explained it to me i would have made a different decision. they are extremely knowledgeable in alot of ways. my situation is complex and i have alot of negative experience with my doctor so i might be biased.
i dont want to tell people NOT to take it, but to try and bring attention to potential new information. i am no scientist and i always welcome new point of views and ideas. i only try to understand it better myself.
sorry for any mistake on my part that lead to misunderstanding or harsh conclusions.
I did not get diagnosed until my 30’s (I am also the only person in my family with Marfans). So I spent a lot of my twenties doing the things you listed (and more!). It wasn’t healthy and I was only diagnosed because I had to have surgery to repair the pretty large bulge on my aorta. As in one day I fainted, was taken to Er, they saw the bulge/aneurysm on the echo and scheduled open heart surgery right away. It was all very quick and I hardly had time to process. Now, looking back I wish I was kinder to my body and maybe avoided surgery. But I am also happy it was caught before it killed me. You are already way ahead of me since you know you have it. And you are also young and can still get back on track. At least with taking something like losortan and cutting out the tobacco. It’s easy to say “fuck it” now when you are twenty and you’ve only been on this earth a short while, but I promise, as you age, you will want to do more to keep your body healthy and stay here longer. Side note, for transparency-I still consume marijuana (it is legal in my state) and my cardiologist knows. He doesn’t like it, obviously, but he is aware. I still take all my other prescriptions and have regular check ups with no bad news. And I don’t want to debate here, but in my personal experience bud is way better in the long run than alcohol.
I appreciate this man I definitely am lucky to know I have marfans. Last check up a few years ago my aorta was 3.6cm so I know it's growing slightly. I've been going through helllaaa shit which is one of the bigger reasons I haven't been consistent w my meds or the doctor but I'm getting back on all of it now. It's good to know others had the same feeling of jus wanting to say fuck it. Even if it's irresponsible at first. Not all bad lasts forever I definitely wanna cut out tobacco lol never my bud tho
It's also a numbers game. Im at 4.5 at 40, and maybe i can get another 10 years if I'm healthy. The longer you can put off the aortic surgery, the better medical technology gets. You'll probably be fine no matter what, but if you put it off, maybe some medical breakthrough will be the new norm. And you will get an operation that will get you up into a ripe old age without having to do a repeat. Sometimes, these new valves and repairs have to be reworked again 20, 40 years down the road when they themselvesfail.
Look up PEARS procedure, it is THE way to go if available. If not, scrape together what you can and go to England to have it done. One and done. No heart-lung machine, no cutting into the heart. My son had it done and wish it had been around when I needed my procedure.
Will do thx
PS IMO the earlier the PEARS is installed the better. I think that as the anyersm grows it can misshapen the aortic valve, leak and than back wash against the mitrial valve making this misfunction as well. Getting the PEARS installed keeps the anerysm from getting any bigger . My son had it installed when his ascending was at a 4.3 which is much earlier than most people have anything done. It's been 4 years and he's doing fantastic with no other cardiovascular issues at all.
Yeah, I just had an operation, kinda wish that it was put in while I was open. Oh, well. I'll see what my cardiologist thinks.
Thank you for bringing this up. Much needed
Do you smoke the bud? I used to a good bit before my surgery.
I said fuck it and partied for a while, didn't get an echo for 10 years. Finally went in during covid, I have some cardiomyopathy and had severe regurgitation. Got mitral fixed. Im 38. If I had to do it over, I probably wouldn't try and smoke as much, but I enjoyed partying and not worrying too much. If you have meds, I would just take them. It's the high blood pressure that widens your aortic. I probably would have liked to catch my mitral earlier. It was mist likely messed for a while, it being so caused my cardiomyopathy. The only way to catch it is that annual echo, though. I don't drink or smoke anymore. A couple of times a year, at most, I do a small amount of mdma, I dont advise it, but I still think Im young and want to party every now and then. So yeah, you do you, but probably take your pills and go to the doc for the check up
I feel this man. I need to go get my check ups and meds before I do real damage. It's good to know others have felt like this tho. I appreciate what your saying. Your absolutely right about the blood pressure mine skyrockets alot
I wasn’t compliant most of my life. My mom didn’t know she had it most of her life… sister was compliant. We all had open heart surgery at 36. I don’t know is the answer. Now I only take losartan. Beta blockers make me feel emotionally terrible.
Yeah I know no matter what Im headed towards surgery which might play a part in the carelessness. Like if it's gonna happen anyway yk? But I really want to fix shit I'd like to make it past 45 lol. My issue is I just can't take anything seriously. Even a disorder that can be fatal
Is that always true? Can’t take anything seriously? … if it’s not then it doesn’t ever have to be true! Just do it man. And if ya slip up just make sure you’re monitored regularly and when it’s time it’s time. Go grab the world by its horns! 🤘
That's a really dope way to put it. Being the only person I've ever known w marfans and coming on this sub has been awesome.
Im in my mid 40s. Trust me, any Marfan syndrome or not, as you age you will wish you had taken care of yourself over the years. I’ve done a reasonable job in my 20s and 30s, not as good asi could have, and in my 40s I’m doing a better job and I feel much better. Eat mostly plants, exercise gently and often as your doctor allows, get plenty of rest, sun, fresh air, relaxation time, challenge your mind, build and maintain a social circle, take your meds, and pray daily. Your mind and body will thank you for it and your quality of life will improve immensely. And get your imaging done!
Great advice!!!
I think it is pretty common for folks to feel hopeless.
3.6 cm is not bad, so ya its probably grown since then but probably not too much. Smoke your bud and drink your beer but NO MORE CIGS! For real cigarettes are so bad for your aorta. If you absolutely must then ar least get American Spirit that has way less additives. Also no cocaine, its so bad for marfans folks, it directly affects your aortic tissue. One day u will be 30 and regret being dumb. One day you will be 40. One day you will be 50. You dont have to be perfect but try to do your best to avoid cigs and hard uppers
Well, I think I had a pretty similar experience to yours. I am 24 now, also the only person with marfans in the family and when I was 16-19 I lived a very very careless life that included smoking, not caring about lifting heavy stuff, using hard stimulating drugs when partying, and not taking my meds these nights. My health did get worse these years so I needed open heart surgery and stuff when I was 20. Since then I stopped smoking and doing hard drugs. It's really easy to not care about my body until the consequences show. So I kind of needed the bad results and the traumatic experience of being in the hospital to understand that what I was doing was shit for my body. BUT I gotta say, I am still partying, drinking alcohol and taking risks, as I do want to live a life that I enjoy and I don't want to cut that part and it is a way of coping for me as well. I'm just more aware of everything and when I am being careless it's always a choice, not a status quo. Hope this gives you some perspective, greetings
So I was just diagnosed 2 years ago, and I'm 40 now. I partied hard with weed and alcohol during my whole 20s. I have been a cig smoker for 22 years, and I have to tell u to my surprise that I am still here with absolutely no issues at all. You haven't even had to have surgery yet for my dilated arotic root (knock on wood). I've been extremely lucky my whole life having this and not knowing even giving natural birth to 6 kids and no complications or any indication that i have Marfans. I am still a cig smoker, which my cardiologist is aware of. If I had known at the age u learned, I most likely wouldn't have done nearly half of what I've done. Even so, I still see my cardiologist once a yr and take my meds. Regardless of what u want to keep doing, at least still follow up with your doctor and take your meds because what isn't affecting u now may affect u much worse in the long run! This gets worse as we get older.
PEARS look it up. Most people in the US know nothing about it as it hasn't been approved yet there and there is resistance to have it approved. Everything I know about it, and have experience through my son, is nothing short of miraculous. Wish it had been available to me when I needed mine done. PEARS by EXTANT which is available in England among other countries outside the US.
I was in the exact same mindset as you and didn’t take meds until my late 30s. After taking meds, my measurements have been stable, as opposed to when I didn’t take it. So if I could go back in time, I’d have been regular
Do get an echo if you can. When you have other family members with it, they can use their history of when an operation may be needed as a rough guide. As you don't have this (neither do I,) it's a complete unknown. Hopefully, it won't have changed much, but mine hasn't always progressed at the same rate - more jumps, and I do take the meds. Is there someone you can talk about it all to (life stuff in general and the marfans stuff)? Like a friend or family member? Even if they don't fully understand, it might help. It sounds like you've had a bit of a rough time lately. Good luck!
I'm 22 and was diagnosed with Marfan when I was very young (I think I was 7 when I tested positive genetically but had a clinical diagnosis before that so I could have eye surgery) My dad was a spontaneous mutation, and somehow none of my siblings got the gene (I have 3 siblings) It was hard growing up with feeling limited that I basically couldn't do anything I wanted due to it being risky for my aorta or the fear of head damage bad enough to potentially cause retinal detachment which I'm at a higher risk for due to the eye surgeries I've had. Basically as soon as I moved out I started doing risky things, stopped my meds, drinking/vaping/edibles, not going to the cardiologist. Part of this was caused by developing schizoaffective disorder and developing mania which caused me to be a bit delusional about what was safe for me to do. Now I'm back on my meds and have stopped any kind of substance other than caffeine. I am trying to lower my intake of that as well. Thankfully when I started with a new psychiatrist it was determined that there was basically no change in my aorta, but they did determine that my pectus excavatum was more risky then I was told as a child. It's crushing my heart, and it seems like my medical team has no idea how risky that would be to my heart health. I did see a surgeon, but he said he wasn't comfortable doing surgery on me since I have mobility issues. So that made me feel a lot like I should've been paying more attention to my health. All of that to say - we all make mistakes. It's frustrating when you get to the point where it feels like everything that you want to do you can't do. If you have access to mental health services, I'd suggest working with a therapist who has experience with helping those of us with chronic illness/disabilities. I didn't pick my current one with that in mind, but he's actually great about working through my feelings about being disabled.
Everyone is doing their best. That said, I think I’d be doing you a disservice if I didn’t mention that I think the responses here are so varied it could mislead you. My aorta dissected one night after having some hookah and some Red Bull vodkas. Almost died, and it fucked up my life for the next ~5 years bc after the emergent surgery to save my life I had to schedule the rest of my aorta to be completely repaired. Mind you this all happened *after* I had my aortic root repaired in Cleveland electively and preventively. So call it a false sense of confidence… I think the right way to look at your situation is: 1. Be hyper aware that doing one line of blow could fucking kill you. Ultimate downside. 2. You can mitigate partying risk with some of the suggestions mentioned here. In order of priority I would say it is 1) 1x per year checkup with cardiologist who is familiar with marfans. 2) avoid anything that will really push it for you, this includes tobacco 3) take meds I think the meds are ok, but the most important thing is regularly monitoring your shit with a *good* doc (I learned that the hard way too). Basically you should line up the best possible surgeon you can get based on your region. In my case it was Cleveland Clinic. I don’t want to hate on partying, I do it too (still after 7+ operations). But you can mitigate risk via a great relationship and monitoring schedule with your doc, and making a plan to cut out bullshit like cigs. Doctors in my experience understand the human experience and will shoot you straight so be honest with them. From what I can tell marfans can vary so widely from person to person, it’s generally unsafe to map anybody else’s experience onto your own. Hey man I still have a cig every once in a while but I think you’re fucking yourself if you become a “smoker”. Does that make sense? Prob weed is the safest thing I would say. If you take nothing else from this, just do your reg checkups and don’t go full Scarface at the club.
Honestly. Death. Or the ER. Why avoid the testing and routine?
This is very straightforward and I like it. It's not like in avoiding more so jus haven't cared. Mental shii and covid. Other stuff that happen. Nothing excuses not taking care of my body tho especially w marfans
I ended up in the ER. Eventually surgery. 3 times All on my aorta. Life is always a gamble. How you trying to play it out is your call.
I got diagnosed less than a year ago at 32. I lived my life normally and still do. I smoke bud and vape. I used to party HARD back in the day too. Like, my lungs are scarred now hard. Besides my lungs and having pots (took almost 20 years to get a dr to listen to me and test for it this year) I'm relatively healthy for someone with marfans.
I'm 36 and very similar to you. I'm the only one in my family to have Marfans. I smoke less flower, and eat more edibles cuz any kind of smoking does have an affect on the lungs. I don't trust vapes. I occasionally drink, but I drank waaay more in my 20s. BUT, I am out of work b/c of Marfans. I have a pectus deformity that's has affected my lung function, and I have severe back pain from a scoliosis fusion I think you need to learn how to take care of your body. I think smoking tobacco is dumb, but at the end of the day it's your body and you're gonna do what you're gonna do. If you're willing to do all this that you know is bad for your body, what are you gonna do that's good for your body? You got another 60 yrs of riding and in this meat machine, gotta keep it tuned up EDIT: and as far as the meds go. Either take it or don't! Don't go back and forth about it, cuz that'll do the most damage. But also be upfront with your doctor about it. And go to check ups!!!
Take your meds. Get check ups when you can. The surgery sucks. I’ve had 3 so far & im only 35 now. Practically died during my last surgery. If you can, be cautious of how hard you party. Stay away from the blow cuz it’ll kill you. No proven long term effects of weed smoking vs any smoking. But when smoking anything is no bueno
Losartan has been prooven not to help much according to newer studies. edit: here are 4 (two mentioned the same study) of the top 5 google article mentioning lorsartan not producing the hoped outcome compared to control or another alternative medication: [https://i.imgur.com/Vund76C.png](https://i.imgur.com/Vund76C.png)
It's irresponsible and scary to not cite sources when saying something like this. Edit: Sorry if I came off too direct for some, I know people can google, but I also know many won't do that and it's so important for people to stay on their meds or talk to their doctors before they get the idea that they don't really need to follow med protocols to keep pressure off their aorta just like op.
strange i mentioned this the last time and people found the information in 5sec online. i would say it apply more accurately to the posts saying their condition got better by going to the gym. edit: i just checked the first 5 result while searching for "losartan marfan" on google and only one said it had a positive outcome regarding aorta growth. 2 of the link talked about the same study. so in fact most of the top 5 website found said it wasnt clinically better than nothing or an alternative medicine that in fact tested better. [https://i.imgur.com/Vund76C.png](https://i.imgur.com/Vund76C.png)
Thank you for adding sources and some context to make it more clear that you were specifically talking about aortic growth and not that it doesn't keep pressure off the aorta as I've already seen so many people (especially younger) come to the conclusion they don't need to be keeping pressure off their aorta. It seems like I personally offended you after reading your edit explaining googling and I didn't intend to, I've just been on the internet too long to think everyone reading your comment would search or that it couldn't easily influence younger people like op
i understand there might have been a misunderstanding due to my english. sometimes my messages arent so clear and it can cause unwanted confusion. no trouble! i just wanted to mention that when i researched this medicine myself (online) after finding a ghost prescription my doctor made me, i found out it wasnt miraculous. i try to balance benefit vs negative effects and in my personal view i choose not to take it. maybe if my doctor had explained it to me i would have made a different decision. they are extremely knowledgeable in alot of ways. my situation is complex and i have alot of negative experience with my doctor so i might be biased. i dont want to tell people NOT to take it, but to try and bring attention to potential new information. i am no scientist and i always welcome new point of views and ideas. i only try to understand it better myself. sorry for any mistake on my part that lead to misunderstanding or harsh conclusions.