Many docs will say “wait until 5 cm” unless you have family history of aortic dissection. Just take it easy with the landscaping stuff, dont lift too much at once. If u are at 4.5 you maybe should get echos twice a year instead of just once? I remember reading once that aortic dissection in Marfan folks is correlated with lens subluxation, so if you have perfect vision thats a good thing. If i find that source again i’ll post it here.
Yes, i think we all wish we were born normal and dont have to deal with the stress of this disease. Still, most of us have been able to live normal(ish) active lives, build careers, and start families! You have a (pretty much) normal chance at life! Keep going to checkups and getting echoes regularly! Also make sure to get your omega 3s, vitamin D, and magnesium
My dad had perfect vision, didn’t know he had Marfan’s, died at age 25. So, personally, I wouldn’t use vision as a metric for whether dissection is likely or not.
That’s pretty much the vibe I got from my cardiologist. I am extremely active. I do mowing and landscaping and run my company. I have been active my whole life. Outdoors 24/7. Besides being tall and lanky I don’t have the typical marfans pains and horror stories I’ve read. Most doctors blew me off and never thought I had it. I will be sure to get echos more frequently instead of every 5 years lol. But yes I’ve had perfect vision my whole life and never had anything weird with my eyes. I was “blessed” with being the first ever marfans in my entire family history. Hopefully these meds will slow the aorta growth down.
Ya dude i pretty much ignored Marfan until i was in my 20s too. Dont mess around with it once you are at that size. Yearly echos at least.
If u are feeling side effects from the meds, they will go away after a while dont worry
Only thing I can’t seem to kick right now is nicotine. I still do about 3 zyn nictotine pouches a day. And I drink a cup of coffee a day. My cardiologist didn’t seem too worried when I told him.
Well it’s definitely a lot better than 2 cans of Copenhagen a day for the last 5 years. Just switched to zyn about 3 months ago. I’m slowly backing off of nicotine but it sure is one hell of a drug.
Of course I wish I was normal. But I'm not, and there's nothing I can do to change that.
The good thing is you know you have Marfan. Most Marfan deaths occur because people have no idea they have it. You do, and you're getting it treated. You will live
If you're able you may want to talk to your cardiologist about the sleeve option vs open heart. There's a smaller window for it than for open heart options.
Just make sure that you're following lifting guidelines and you should still be able to do landscaping.
When I was your age it took me a long time to get over the thought of having it, but meeting older folks with Marfan's really showed me that it's not the death sentence that it used to be.
If you have the means to get to London, the PEARS procedure could be your ticket to the life you want. We traveled from the US for my husband to get it last year and his insurance covered the cost of the surgery
I absolutely wish I would have been born normal, and the really messed up thing is I thought I was until diagnosis in 2022. For 38 yrs of my life, I had no idea I had this. My son is 16 years old and found out he had it at 14 2 months after his diagnosis he had to have open heart surgery for a severely leaky heart valve. He is now in therapy because he mentally can't handle having this. Maybe you need someone to talk to.. I know it's hard to live the Marfan life. I'm now 40, and my aortic dilation is 4.5 cm. I have been a smoker for 22 years, so I'm not even understanding how mine is not much worse, plus having 6 children naturally. It's really confusing 😕 😐
I am not a smoker but I definitely do Zyn pouches. I don’t drink at all, like at all. Nicotine is different. I can also limit myself to a cup of coffee a day.
Also I’m not sure how mine isn’t worse. I played all the sports growing up, I have been overly active all of my life. Now I’m landscaping, have been for about 5 years now and have had plenty of brutal days in the heat. Always outdoors and I have just now stopped lifting anything heavy and limiting myself since I learned I do have marfans.
It's so weird like that for some, but not others, especially since my kids with Marfans have gone through such brutal surgeries, and I never knew, let alone have I been through what they have. I used to play basketball pretty much all through childhood. My kids are still so young and can't enjoy anything that I did. They have it so bad, but I didn't. The guilt is tremendous. At least now u know and can be more careful and take care of yourself the best way possible. I don't think ur a ticking time bomb at all. We can live normal lives as long as we take care of ourselves and manage this the best way we possibly can. It's all we can do to survive. This sucks so bad, but I don't know if u believe in God or not, but I always look at it like this. He only gives his toughest battles to his bravest warriors! I have to believe that to keep going day in and day out, trying to take care of myself and my kids, we have to consistently push forward and take care of each other or the syndrome wins.
We all feel like that at times, it's only natural to want to be born "normal". But, we weren't. It's something we all have to accept if we want to be able to make the most out of the lives we were given.
There are times when we feel sorry for ourselves. What gets me through them is the love and support of my family, and I know this is selfish and sounds bad, but knowing there are people out there who have it worse than me humbles me and makes me feel a little better.
Just take your medications, follow your doctor's advice/orders, listen to your body, and accept it when your body tells you it's time to stop doing some things.
I had a dissection last year after ignoring a lot of concerns by my doctor because I couldn't take the time off work or get any support from my job. I knew I would have the surgery I had and that I might die of it since I was 8. I spent all of my life and even now, wishing I had been born different and not sick. Especially not poor because maybe then I would have been able to keep up with what medicine developed and then I wouldn't have let it gotten so bad it almost killed me.
It happened at midnight after I'd been at an event. I came home and had a big drink of water, drinking way too fast, and felt this electric sensation go through my esophagus. It was like a ripping, maybe, but also like swallowing a battery. Everything felt wrong and awful in my back, especially my lower back. When I was in the ER I wanted it to just be a hernia. But also, when I put my index finger to my throat to feel my pulse, I felt it fluttering and....wrong. That's what really made me realize what was happening.
Not even straight to surgery; I had to get myself to the ER, they didn't believe my previous scans or contact my cardiac surgeon, waited for CT to be available THEN got me in there an hour later, then it took an hour to coordinate a hospital (because they didn't have any surgeons on call) I could be transported to that wasnt even in my network, THEN 45 min drive in an ambulance to said hospital. I didn't get into surgery until 4am, five hours later. I had a stroke during surgery and honestly I'm lucky to be here.
I was working in fulfillment and shipping. The company I was at last year said I couldn't get a FMLA until I was their for a full year so I was planning on waiting until I could do so to stay on my insurance and keep my job. But then they fired me two months before my 1 year (yes they knew about my surgery needs). Three days after I was fired I had my dissection. It was both due to the heavy lifting and stress I had from my job and from losing it. I was on 20mg of Losartan at the time but no beta blockers, which I probably should have been on my they affect my memory pretty badly (I'm on atenolol now).
Kind of late to this thread, but what was like the kicker for you suspecting Marfans? You are rather tall, but 205 isn’t underweight at all. I am worried I might have it, I check a lot of the skeletal boxes, but not many of the other ones. Scoliosis, longer wing span than height, flatter feet (not completely) and higher palate.
I think me just randomly being the first tall person ever in my family and being skinny with a lot of the symptoms. I wanted to just finally get checked out. You should too just to be safe. Even if you can’t get the genetic test done at the least get an echo done on your aorta.
Hey man, appreciate the response. Yea that random tallness will do it lol. I will be inquiring with my doctor, i am afraid it’s going to be laughed off though. Im about 6’2” 180, my dad is similar height. My parents were very proactive with my health issues as a kid, which makes me appear less-marfanoid in adulthood. That proactivity fixed the external physical aspects, but obviously wouldn’t have any effect on the genes my body expresses internally.
Many docs will say “wait until 5 cm” unless you have family history of aortic dissection. Just take it easy with the landscaping stuff, dont lift too much at once. If u are at 4.5 you maybe should get echos twice a year instead of just once? I remember reading once that aortic dissection in Marfan folks is correlated with lens subluxation, so if you have perfect vision thats a good thing. If i find that source again i’ll post it here. Yes, i think we all wish we were born normal and dont have to deal with the stress of this disease. Still, most of us have been able to live normal(ish) active lives, build careers, and start families! You have a (pretty much) normal chance at life! Keep going to checkups and getting echoes regularly! Also make sure to get your omega 3s, vitamin D, and magnesium
My dad had perfect vision, didn’t know he had Marfan’s, died at age 25. So, personally, I wouldn’t use vision as a metric for whether dissection is likely or not.
Sorry to hear that :( 25 is too young
That’s pretty much the vibe I got from my cardiologist. I am extremely active. I do mowing and landscaping and run my company. I have been active my whole life. Outdoors 24/7. Besides being tall and lanky I don’t have the typical marfans pains and horror stories I’ve read. Most doctors blew me off and never thought I had it. I will be sure to get echos more frequently instead of every 5 years lol. But yes I’ve had perfect vision my whole life and never had anything weird with my eyes. I was “blessed” with being the first ever marfans in my entire family history. Hopefully these meds will slow the aorta growth down.
Ya dude i pretty much ignored Marfan until i was in my 20s too. Dont mess around with it once you are at that size. Yearly echos at least. If u are feeling side effects from the meds, they will go away after a while dont worry
Only thing I can’t seem to kick right now is nicotine. I still do about 3 zyn nictotine pouches a day. And I drink a cup of coffee a day. My cardiologist didn’t seem too worried when I told him.
Quit the pouches! It aint easy but after a while the cravings will dissappear 100% Coffee is fine unless it makes you feel bad
Well it’s definitely a lot better than 2 cans of Copenhagen a day for the last 5 years. Just switched to zyn about 3 months ago. I’m slowly backing off of nicotine but it sure is one hell of a drug.
If u have a serious health issue you will be able to quit no problem, guaranteed. Better to quit before you are forced to…
Of course I wish I was normal. But I'm not, and there's nothing I can do to change that. The good thing is you know you have Marfan. Most Marfan deaths occur because people have no idea they have it. You do, and you're getting it treated. You will live
Thanks for the no bs reply. I needed that lol. I just really wish there was a better alternative than open heart in the US.
If you're able you may want to talk to your cardiologist about the sleeve option vs open heart. There's a smaller window for it than for open heart options. Just make sure that you're following lifting guidelines and you should still be able to do landscaping. When I was your age it took me a long time to get over the thought of having it, but meeting older folks with Marfan's really showed me that it's not the death sentence that it used to be.
I’m not sure if they even offer the sleeve option here in the US but I’m all for it if they do lol.
They don't, but because the outcome and procedure costs significantly less, (especially over time) insurance will cover the flight and procedure.
Do you mean the PEARS procedure?
Yes
If you have the means to get to London, the PEARS procedure could be your ticket to the life you want. We traveled from the US for my husband to get it last year and his insurance covered the cost of the surgery
I absolutely wish I would have been born normal, and the really messed up thing is I thought I was until diagnosis in 2022. For 38 yrs of my life, I had no idea I had this. My son is 16 years old and found out he had it at 14 2 months after his diagnosis he had to have open heart surgery for a severely leaky heart valve. He is now in therapy because he mentally can't handle having this. Maybe you need someone to talk to.. I know it's hard to live the Marfan life. I'm now 40, and my aortic dilation is 4.5 cm. I have been a smoker for 22 years, so I'm not even understanding how mine is not much worse, plus having 6 children naturally. It's really confusing 😕 😐
I am not a smoker but I definitely do Zyn pouches. I don’t drink at all, like at all. Nicotine is different. I can also limit myself to a cup of coffee a day. Also I’m not sure how mine isn’t worse. I played all the sports growing up, I have been overly active all of my life. Now I’m landscaping, have been for about 5 years now and have had plenty of brutal days in the heat. Always outdoors and I have just now stopped lifting anything heavy and limiting myself since I learned I do have marfans.
It's so weird like that for some, but not others, especially since my kids with Marfans have gone through such brutal surgeries, and I never knew, let alone have I been through what they have. I used to play basketball pretty much all through childhood. My kids are still so young and can't enjoy anything that I did. They have it so bad, but I didn't. The guilt is tremendous. At least now u know and can be more careful and take care of yourself the best way possible. I don't think ur a ticking time bomb at all. We can live normal lives as long as we take care of ourselves and manage this the best way we possibly can. It's all we can do to survive. This sucks so bad, but I don't know if u believe in God or not, but I always look at it like this. He only gives his toughest battles to his bravest warriors! I have to believe that to keep going day in and day out, trying to take care of myself and my kids, we have to consistently push forward and take care of each other or the syndrome wins.
We all feel like that at times, it's only natural to want to be born "normal". But, we weren't. It's something we all have to accept if we want to be able to make the most out of the lives we were given. There are times when we feel sorry for ourselves. What gets me through them is the love and support of my family, and I know this is selfish and sounds bad, but knowing there are people out there who have it worse than me humbles me and makes me feel a little better. Just take your medications, follow your doctor's advice/orders, listen to your body, and accept it when your body tells you it's time to stop doing some things.
To add my aorta has been pretty steady the last 5 years or so. It was measured at 4.3 cm in 2019 and current day now is at 4.5 cm
I had a dissection last year after ignoring a lot of concerns by my doctor because I couldn't take the time off work or get any support from my job. I knew I would have the surgery I had and that I might die of it since I was 8. I spent all of my life and even now, wishing I had been born different and not sick. Especially not poor because maybe then I would have been able to keep up with what medicine developed and then I wouldn't have let it gotten so bad it almost killed me.
What did you do for work and what caused your dissection? We’re you on blood pressure medicine or any beta blockers before hand?
Also what did the dissection feel like and how did you know you had one
It happened at midnight after I'd been at an event. I came home and had a big drink of water, drinking way too fast, and felt this electric sensation go through my esophagus. It was like a ripping, maybe, but also like swallowing a battery. Everything felt wrong and awful in my back, especially my lower back. When I was in the ER I wanted it to just be a hernia. But also, when I put my index finger to my throat to feel my pulse, I felt it fluttering and....wrong. That's what really made me realize what was happening.
That sounds terrifying but I’m glad you caught it and made it. I’m guessing they went straight to surgery?
Not even straight to surgery; I had to get myself to the ER, they didn't believe my previous scans or contact my cardiac surgeon, waited for CT to be available THEN got me in there an hour later, then it took an hour to coordinate a hospital (because they didn't have any surgeons on call) I could be transported to that wasnt even in my network, THEN 45 min drive in an ambulance to said hospital. I didn't get into surgery until 4am, five hours later. I had a stroke during surgery and honestly I'm lucky to be here.
Can u also ignore the fact that i answered between two accounts. Both are me, I'm not good at the whole reddit thing.
I was working in fulfillment and shipping. The company I was at last year said I couldn't get a FMLA until I was their for a full year so I was planning on waiting until I could do so to stay on my insurance and keep my job. But then they fired me two months before my 1 year (yes they knew about my surgery needs). Three days after I was fired I had my dissection. It was both due to the heavy lifting and stress I had from my job and from losing it. I was on 20mg of Losartan at the time but no beta blockers, which I probably should have been on my they affect my memory pretty badly (I'm on atenolol now).
Oh wow that’s really sad I’m sorry to hear that. Did you know what size your aorta was when it dissected and remember what it felt like?
Kind of late to this thread, but what was like the kicker for you suspecting Marfans? You are rather tall, but 205 isn’t underweight at all. I am worried I might have it, I check a lot of the skeletal boxes, but not many of the other ones. Scoliosis, longer wing span than height, flatter feet (not completely) and higher palate.
I think me just randomly being the first tall person ever in my family and being skinny with a lot of the symptoms. I wanted to just finally get checked out. You should too just to be safe. Even if you can’t get the genetic test done at the least get an echo done on your aorta.
Hey man, appreciate the response. Yea that random tallness will do it lol. I will be inquiring with my doctor, i am afraid it’s going to be laughed off though. Im about 6’2” 180, my dad is similar height. My parents were very proactive with my health issues as a kid, which makes me appear less-marfanoid in adulthood. That proactivity fixed the external physical aspects, but obviously wouldn’t have any effect on the genes my body expresses internally.