Thanks Debbie for your email.Apologise for the lateness of my reply,new to computers so still finding my feet! I am 34,married and have two wonderful kids,aged...
Hi, I have tried several times to unscribe to your group, could you please take me off your mailing list, it would be greatly appreciated. Sherry Heldt From:...
Hi, I was just wondering if anyone els in this group is going to conference? It would be great to meet some of the people Ive chatted with in person! ...
Too far and too expensive for us but it should be a great time. OK Lee larie beck <ty_ree_b@...> wrote: Hi, I was just wondering if anyone els in this...
Hi everyone, This is a invite that was sent out to mambers of the National Marfan Foundation in Southeastern Washington. If anyone on this list lives out of...
Hope many of you are able to go to the conference! It is always an amazing time. There have been requests to have some special chats after the conference...
Hi, I'm new to the marfans chat room. I've never entered any chat room before so I'm don't really know how this works, but I thought I'd give it a try. I...
Hi Polly, (I'm guessing that's your name) Hang in there, all of the people on the forum either have Marfan or know someone that does have it. So you will find...
Hello and welcome, Newbie (Polly?). I also had never been a part of a chat room, but it definitely made me feel like I was a part of a safe and supportive...
I'm afraid I don't know just how this chat room thing works, but I'm sure I'll learn. I am 63 and was diagnosed with marfan when I was 3. I have had numerous...
Just thought I'd post a quick update, thanks, and welcome to the newcomers! My husband (Aaron) had his aortic root replacement and mechanical valve put in June...
Hi Wendy and Aaron, I'm new to the group, but just wanted to say congratulations on the successful surgery. Hope all continues to go well. I had the same ...
Will do, Polly. I don't think his doctors now will let him out of their sight for long! Still, we've learned even more the importance of being proactive with...
Hi Polly, and all... For those who aren't part of the USA's National Marfan Foundation (NMF), the conference is this weekend July 14-15 mostly. So it will be...
Hi Polly, I'm not so great with the chatroom thing either but I'm good on the posting boards...like this. Thanks for telling us about who you are and your...
I'll be happy to share any information or experiences that I can. When I was first diagnosed very little was known about marfan. I believe my mother had it as...
we are still here and miss you all I don't have Internet access tell around October or November. grrrrr... I will be back.... I miss you all very much. we are...
Hi Marsha, and All! We arrived home from confrence at 1 am this morning, 15 hour drive. I am exhausted. I would love to share our experience. Let me know when...
Hello all, After my last echo and ct scan, my cardiologist is recommending that I go ahead and have my aorta and mitro valve replaced. I am meeting with a...
I have my aortic valve and aorta replaced at age 50 and was in generally good health at the time. I am now 63. It is my understanding that 6 weeks recovery...
Hi, Daniel had his ascending aorta and valve replaced approx 5 years ago. He was 14 at the time and reasonably healthy. He was out of hospital in 5 days and...
Hi Polly et all, I've never heard a teflon valve mentioned even at the National conferences I've gone to. This is interesting to me. I had my aortic root done...
No, the teflon valve is not quieter. And yes, you must still take blood thinners to avoid clots. I did not know I had a teflon valve until I had to have...
Polly, Thanks for the information. It's interesting to find out there is another type of valve, always heard tissue or metal. Mine is a St. Jude also and...
Hi Marsha, I don't know what a TAAA is. Please explain. My first heart surgery was the aortic root and valve replacement in 1994. Then I had aortic anurysm...
Sorry, I should learn not to always use abbreviations. TAAA = thoracic (descending) abdominal aortic aneurysm. Since my first surgery (1995) was emergency my...
Hey guys, Think I'll probably be missing tonight. I don't know if Velda will be on or not so if someone wants to head up the group go for it. Too many nasty...
