I'm learning so much.

[Guest guest]

To everyone, I'm jeanie, I have only written one post on this sight but have been reading for a little over a week after my dr, said maybe I could find a support group for A. Well, I feel like I've stumbled onto a whole new family. A family that actually knows what I'm going thru. My dr., who is definitely not a specialist, doesn't really have a clue about this disease. I saw a surgeon after my dr did a cat scan and found a "massive" 2 liter size SOMETHING in my chest. As I said in my first post I had surgery in 1971. I didn't even know what kind it was until recently. My parents took care of all the "technical stuff" as I was fairly young at the time. My parents are both deceased now so I don't even have them to ask questions. I doubt they would be nearly as educated as so many of you are on this subject. Anyway, I am now end stage so I was very interested in what richards dr. had to say. My next decision is

what to do now. I've been worrying about my E perforating or rupturing ar something even more unappealing so now I feel I have a little more perspective.I know I have to find a dr. somewhere but am not sure where. I think dr. Perelli [sp.] in seattle is the closest. I live in the norhtwest corner of montana, in a very remote location. I understand dr.P. is a very knowledgable man in this field. I have a tendancy to put things off and am currently having a battle with myself about getting pro-active in this battle. I feel very fortunate that I've had a relatively small amount of discomfort compared to some of what I've heard from you all. I've always had a hard time getting my food to go down and frequently had to "bring it back" especially if I was stressed, and since I've driven a school bus for 25+ years that was frequent, It was sometimes embarrassing and uncomfortable but not really painful. Not understanding what was going on was the

worst, but when I had my surgery the dr. told me that was what to expect. subsequently, I never really got myself checked like I should have. I did tell the different drs. over the years that I had A {i'm not sure i pronounced it correctly} but they didn't seem concerned about it so I didn't push. I got pneumonia in feb. of this year and couldn't seem to shake it that's why I got the cat scan. That's how I came to know how bad it has gotten. My major problem now is breathing. I think my E. is taking up a lot of room in there. In my first post I also shared that I am very overweight which it seems your'e either very over or very underweight with this disease. I'm sure my weight is a contributing factor in the breathing thing. What I really started out to say is thanks for all the information and support, I hope to be able to add something in the future. Hopefully something VERY uplifting and

possitive. For now just know I'm praying for all of you and wishing you the best. Jeanie { by the way I'm really bad on the computer, maybe I'll get better at that also]

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