[deleted]
Delicious.
Why exactly did you need to have the aortic root replaced in the first place?
I have a genetic disorder called Marfan's Syndrome it affects all my connective tissues, my doctor noticed this and I had scans done to monitor the size of my aorta, when it became too big, I got that bad boy turned into plastic.
What filling of pie do you prefer most?
Chicken. I don't like anything but chicken pot pie.
I was not expecting that! Good call sir, good call.
Any difference in the strengths of your radial pulses on your right wrist compared to the left?
Not that I notice, they seem about the same right now. I also never have an issue with blood pressure readings being off with either arm.
Hey... I am a Marf too! Do you have pectus? If so, how severe? I had surgery on mine a few years back (I was in the military so it was paid for) and now it is only minor. Large scar though.
When were you first suspected of having marfans?
I do! Mine goes out though, which IIRC is not the norm, it's not too terrible, especially at this point in my life when I'm not a little twig like I was in my teenage years, but the bones in my chest are definitely weird.
Re: being diagnosed, I REALLY lucked out, my doctor had just read a study on the disease and referred me to a geneticist when he thought I fit the profile really well.
Is your heart doing alright?
My heart is fine... at least last I had it checked. I was thought to have a large aorta when I was about 12. I have had regular checks up since. When I tried to join the Marines at age 18, I had to have special tests. A doctor mentioned marfans to me and suggested I get tested. I blew it off for a few years after not getting in (I did get into the Army after college though) and started getting checks again. So far all seems well. If it does start to enlarge I am going to push for surgery though.
Please excuse my ignorance. What was the aortic root replaced with?
Will this condition continue to cause you problems throughout your life?
No worries, there are several options to replace the root 1) An animal one, I think pig(not 100% on animal) 2) A graft made of prosthetic tubing, which is what I got.
The root repair has not caused me much issue other than I couldn't powerlift and such, but the dissection I had is a serious lifestyle change (pills every three hours to control blood pressure perfectly, regular scans, etc) Barring my body deciding to fuck me some more, I should live a pretty regular life.
Thanks for the replies. I wish you well, take care.
How bad did it hurt when you had the dissection?
Worst pain I've ever experienced. I have a pretty high tolerance for pain, but I collapsed to my knees and could barely get up to get help. Feels bad man.
Thanks for doing the IAMA, I feel bad for you. I asked cause I had what I thought was chest pain a few years ago, so they checked out my heart and everything came back fine no problems, no stomach/digestive problems or anything of the sort. I thought I could have had an aortic aneurism but noone was diagnosing it right. I eventually got a CAT scan with the dye and it showed it was fine... Dr's kind of blamed my problems on stress or whatever and it eventually went away.
Don't feel bad, I'm here!
How tall are you, and do you have problems with physical activity?
I'm 6'3 and I have never been super active so no change there, but its tough for me to walk significant distances or stairs. I just get out of breath.
I've seen this shit happen, I have an internship in an Operating Room.
During one of these is the first time I've seen someone die in there. Let me tell you, the doctors really worked hard. It's some serious shit, man. I'm glad you made it.
Thanks, firstly for working in a hospital saving lives and secondly for the kind words.
SHOT THROUGH THE HEART...AND YOU'RE TO BLAME
Baby, you give love a bad name. Don't judge me, my mom loves Jovi.
I can relate! I found out when I was 19 that I had a thoracic aortic aneurysm. A month later and I was having open heart surgery to get that bad boy taken out and a graft put in. I also have a bicuspid aortic valve, and they say it'll fail one day and I'll need that replaced. Anyways, the only question I have is why does this make you so sad?
Because my lifespan is significantly shortened and there is nothing I can do to have more time with my loved ones.
I'm late to the party, but here's my question anyway. Did you feel the classic ripping sensation when it happened, or was it more of a 'DEAR GOD THIS HURTS IN A NONSPECIFIC MANNER" sort of situation?
I don't recall a ripping sensation, but more of a sharp pain all around my torso, diaphragm to my pelvic bone.
Hey there.
How did you find out that you needed an aortic root replacement?
Are you able to enjoy "normal" activity? Have there been any limitations because of your condition?
How is the rest of your family? Do they have any heart problems?
Have you adopted a heart healthy lifestyle?
What kind of music do you listen to nowadays?
If you could go to anywhere in the world where would you go?
You have the power to turn into any animal, what do you turn into?
What is your favorite ice cream flavor?
Thanks for answering!
I have a genetic disorder called Marfan's Syndrome it affects all my connective tissues, my doctor noticed this and I had scans done to monitor the size of my aorta, when it became too big, I got that bad boy turned into plastic.
I pretty much can't do anything physically demanding, but I go out with my friends pretty easily. Although since my dissection, I've been taking it really easy.
My mother has a much less significant version of Marfan's, but she has also had a dissection. She's doing fine now.
Not really, my main issues are with the connective tissues so I just take a bunch of pills every day to control my blood pressure.
Lately I've been listening to a lot of Avicii and other electronic music, but I go through serious phases with music. I think I only listened to Steve Winwood for like a month after going on a boat. Classic boat music, right?
I'd go somewhere where I didn't know the alphabet; China, Korea, anywhere really.
Ferret, best lives ever.
Chocolate, not a big ice cream fan sadly.
Thanks for the questions!
I hope I looked up the right Steve Winwood, because I laughed imagining listening to him on a boat. Try some Modest Mouse, they have a nautical sound to me.
Eh, you don't need that much ice cream. Bananas though. Eat lots and lots of bananas.
I'm assuming there was no rupture of the outer vessel wall since you're still here talking to us. How was your dissection classified, and how long was it between onset and treatment? What was the treatment?
Also, since you have Marfan's, have you had any issues with collapsed lung?
Yea, not a rupture. I had a Stanford Type-B dissection, which to my understanding is the first two layers of the descending aorta from the bottom of my ribs to my belly button.
Well, the night it happened there was a huge snowstorm so everything was super slow. I made it to the first hospital in about 45 minutes, they wanted to airlift me to a better hospital about a 45 minute drive away, but the snow kept the helicopter grounded so they had to drive me, which I assume took about an hour or so. After reaching the first hospital I was on dilaudid and I don't remember much of the next 2-3 days. TLDR 2ish hours
Treatment was tons of blood pressure meds through a drip and I currently take meds every three hours at home to control my bp.
No respiratory issues for me thankfully.