Marfan Contacts D

Jack Davidson
Hello fellow Marfaners!!!
Did'nt know I had it until 2 yrs. ago and even went thru A bout with ulcerative colitus with complete removal of colon, ect. in 1989.The last 2 yrs. have been interesting to say the least, but if I make it to May 29th 97 I'll be 58yrs old.But I had to retire and slow down but my Dr's. take an interest in me and that helps. Feel free to contact me.

This is A up date for my May 1997 message I'm still going and feeling better. I walk on A treadmill 2 times daily 1 mi. or 20 min. at A time and I get ck'd on the "cat" scan every 90 days.Riverview hospital at Noblesville,In has A new blood clotting mach. that might be of interest to many people with "MARFANS" THANK-YOU,JACK

Had a new "cat" scan and every thing is the same size which is GOOD news.Happy holiday season to every one. Jack W Davidson

I think I'm going to make it to 60 yrs. old [May 29, 1999].Just A few years ago I thought that was impossible but I've been blessed and here I am.I feel good most of the time and get to travel to different events with my wife and family so I am indeed A VERY LUCKY MAN.

It has been quite A long time since I have e-mailed you but I just had to remind you that if I make it till May 29th, 2000 I'll be 61 yrs old and that is 2yrs longer than the Dr. said I would be here. So I am indeed A lucky and blessed person.Thank you.

Jack W Davidson
1001S 600W
Anderson,IN 46011
765-643-4006

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Maria Davila, Bourbonnais, IL
Hello. My name is Maria. I'll just say I'm 28 because by the time most of you read this, my birthday will have passed. I found out almost 5 years ago that I have Marfan's. I was getting ready to go for a run and I felt like an elephant was sitting on my chest and a knife was digging in my back. That night I was successfuly diagnosed by a local cardiologist that my aorta was dissecting in front of their very eyes. I was helicoptered to Loyola University Medical Center where they performed emergency open heart surgury to replace my valve and about 5 inches of my aorta. I recovered from that and went back to work about six weeks later. I have had other episodes with my silly aorta which included the dissection of the abdominal aorta. As of last year the measurement for it was 2.7 cm. I just got back from the hospital yesterday and it has dilated to 4.2 according to the ultrasound. I'm going to seek a second opinion but I they have been treating the descending portion with meds.

I'M WRITING BECAUSE I'M TERRIBLY SCARED AND I FEEL ALONE.

I remember my doctor telling me that if my aorta ever dilated to 4.0 it would be time to consider surgury again. It's a hard pill to swallow since I think I've been doing as much as I can to prevent anymore dilation. I also have a question about what part of the aorta is the "root". I need to be going but I hope someone will want to correspond with me on this one. We lost my mother on the operating table because her heart wouldn't start back up two years ago. I'm afraid the same thing will happen to me. I've read a lot of the entries posted and everyone seems to be doing fairly well, but I need some support here...the stats are daunting...what are they for sure... dissecting abdominal aorta?? 80% success, 10% paralysis, 10% death? Please clear this up for me if i'm wrong. Thanks and looking for an angel, -Maria

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Doug Davis, Pen Yan, New York
I've had 3 aortic surgeries and would like to know about the abdominal aortic surgery.

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Alyson Day,Central Coast, New South Wales, Australia
alysonday@optusnet.com.au

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Hi! My name is Amanda Dean. I am eighteen, soon to be a freshman in college. I am interested in meeting other people close to my age with Marfan. I have never known anyone with Marfan and I would like to be able to share experiences. Life is tough, but it is easier if you can talk to other people who understand. A little about me, i love singing, acting, writing, playing pool and being with my friends. Check out my profile for more about me, ClassicaHH [if you're a member of AOL]. I love meeting new people so please write me about yourself. My e mail address is

Remember Jesus loves you! Amanda

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Debbie, No. St. Paul, MN- USA
I had a dissecting ascending aorta operation on March 9, 2000. There was an aneurysm below this spot, also, where it tore. OK, I have back pain at almost 5 months that I can't explain why. I don't know what this would be from. My question is, my doctor told me last week that my aorta is torn all the way down- and that this is normal with somebody who's had their aorta dissect, like I did. Why did he wait 5 months to tell me this? I thought something was wrong with me- in the echocardiogram that they did, because of the hole they found. Has anybody EVER heard of this happening, and is it truly normal, as he's saying? I can't find a soul out there who knows anything about this- and I can't find nothing at the library- and I've looked until I'm blue in the face on the Internet for the answer to this question- if this is, indeed, normal or not. Can anybody out there help me? I'm getting desperate. PLEASE.

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Derrick, San Jose, California
I am not sure if I have marfan syndrome or not but I do show some of the signs, the most noticeable being I am 6'5" fairly skinny (I prefeer lean), and have a caved in chest. For the last few years I have been getting pulminary function tests and EKG's ect... and hadn't really worried about it, but with what I've read in the last couple days I don't want to mess aroune if there is any chance I have it. Anyone who has any words of advise things to do, avoid, nutrition, I would greatly appreciate talking to someone about this condition, especially if you are around my age (late teens or early 20's). Thanks in advance, Derrick

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lourdes diaz-pabon, orlando,florida,u.s.a.
Im the mother of four wonderful kids and the oldest one has been recently diagnosed with marfan syndrome, i really need information since this exceptional kid is my worl and star.He is the most wonderful and brave figther I ever seen so here I am to help him achieve his dreams

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Dori, Grapevine, TX
I am a 35 year old female who found out I had Marfan's 3 years ago. I have alot of other physical problems and had a dual- chamber pacemaker put in in Feb. 2000. Would love to chat and email others.

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Mark Dreger, Battle Creek, Nebraska, USA
I am the only one in my family that has Marfan Syndrome. I was diagnosed with it in 1990 at that time I was in the 9th grade and was 6'9" tall... and still growing..... My Eyes have not gave out on me yet.. I take alot of vitamins and eat good healthy food.... The only thing wrong with my heart is that the Aorta/Left Ventricle is just over whelming big.... over sized just a bit.... And My sing height is 7'5". My weight is 190lbs. And very skinny.... But hopefully I can put on a little weight again in the winter....As for the Summer time I am too active.... Well that should just about cover it for now.... If you can't E-Mail me on the specified address try and that one will work......

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Kelsey Dresser
I'm 9 and have known about being marfan since I was 2. On May 16th I will be having surgery for replcement of my aortic root. I would love to get emails especially while I'm getting better from my surgery.

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Louie DuPree, Quitman, GA 31643
I am a 58-year-old highschool teacher (French and Spanish). My youngest daughter Elizabeth also has Marfans. Her two older sisters do not. I am legally blind and have a pacemaker, but I Have always been athletic. I was a middle distance runner in highschool and college and still run three miles a day. Although she had to have the lenses removed from her eyes when she was three, Elizabeth has nearly 20/20 vision with glasses and is in the best of health.
I would like to do something to contribute to the wellfare of the community of people with Marfans.