Hi Alley, There are a few Marfan specialists in the UK, have you contacted the Marfan Association UK yet?? They where really helpfully when I became a club...
Thanks for the info. It isn't my place to get in contact with the doctors as it is not me who has Marfan'ts. I think if my boyfriend was that bothered about...
Try to get him to do an echo EVERY year. My doctor did one and said we'll do one in 3-5 years and I dissected before that as I know others have done. I didn't...
Hi Ally, It must be hard for you if he will not talk about it. Have you tried the scar stories !!! It's not a nice way to go about it but .... Last year...
Hi Ally: It's really difficult on us when our loved ones refuse to take their Marfans seriously, but it happens regularly. Some people are happiest when ...
Thing with him is he is a hypocrite. I have health problems myself and I am actually doing something about it now, but to start with he is the one who...
Hi Ally, How about if I send the boys round and we drag him to the doctors (only joking). How about contacting the Marfan Association and getting them to send...
Hello all, it is time to have our Sunday night chats. As usual, we are open in the room from 8-11pm eastern time. We will be chatting about any subject that...
Hi everyone. I am not staying to chat tonight. I had emergency surgery Thursday night on my gallbladder. I feel like absolute crap. Monday night my sister...
Ok people, I don't know what is up lately. I came into chat tonight wanting a great chat week, and instead only two lovely ladies showed up. No one talked, no...
looks like I was too Late.....what time is tuesday chat? Benny _________________________________________________________________ Get a FREE online computer...
Please feel free to try the Sunday night chat again next week. I just had things to do and was tired of being in the room alone tonight. Usually we have a good...
Hi Connie, Be sure to announce the beginning of the Tuesday chats. Since I get up at 4:30 AM Monday, 8-11 Sunday is too late for me, sorry. I even have to ...
I am truly sorry for anyone that does not have local EMTs as awesome as ours. Even in my little rinky-dink town that has no highschool, or even a grocery...
sorry about not staying last night, but I was typing my little fingers off and no one was answering me. I'm not sure if the glitch was on my end or yahoo's....
I just have to reply to that. I have come to the chat many times to talk about my son and NO one responds. I feel like it has been a waste of my time the...
I am so sorry you feel that way. I promise to listen to your needs and experiences anytime you come to the chat. I just can't relate to the body cast...
Sometimes I can get there, sometimes I am just too tired. Sorry about that. I got a lap top, so I could chat lying down, but I can't seem to get into chat...
Anita, I have noticed that folks are more apt to respond when it is something they know about. I haven't heard of others in your situation. I was in a body...
Hello there Connie and the rest of the Marfan chat people, I used to be in the Sunday night chat way back pretty early on when Connie started the group. I...
It's not just that he is in a body cast. We found out that he had Marfan syndrome at 2 months and I looked to the group for support. His heart has steadily...
I am working hard to try to make chat. I have been working on the issue for three days. Gateway is sending me my fifth new hard drive next week. So will be on...
There is a purple ribbon project that was started in the heavens that is becoming highly commendable. Trees and churches are being decorated with these purple...
Hi! Connie, I find Sunday evenings difficult because I have to get up early the next day for work. The only times that are convenient for me are Saturday...
Hello all! I am back with my new mitral valve and now a few other problems! Apparently the March 3rd operation was "dicey and difficult" and 11 hours from...
Lisa, Hello; glad you're back! Forgive me, I don't know your whole story - ie circumstances why your valve was replaced, etc. But my husband had arrythmia...
Hello all, I am hating marfan syndrome just now. Not that I ever love it... A week from today I will have my third surgery in 3 & 1/2 months and it looks like...
Connie, Well I too know your predicament. I am in the same boat actually. I am divorced and have worked two/three jobs and went to school full time (on a...
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