Re: Re: Why are my lungs sooooo bad? Great Answers!!!

[Guest guest]

Hi Ellen

glad the answers made sense to you

i live in Langhorne, a suburb of Philadelphia

i go to university of Pennsyvania

Temple University is also in Philly

Both teaching hospitals have departments specializing in ILDs

Cleveland Clinic is too far for me to go to

there are other people who go to cleveland clinic, but...

i don't remember who

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Why are my lungs sooooo bad? Great Answers!!!To: Breathe-Support Date: Thursday, July 9, 2009, 9:20 AM

Joyce, Beth, and ,Thank you so much for such kind and wise words. I was waiting to get knuckled in the head by Sister Anne (I did love her), I scraped by on that one.I will keep you all informed on my visits to the Cleveland Clinic. I have been looking for a reply that I received once from someone on the board that went to the Cleveland Clinic not too long ago. Joyce she was from PA I believe, was that you? I'm just wondering how that went.ellen>> Good Evening,> > Yes, I am actually going to write something from my little corner, hoping somone can give me a simple explanation.> > After reading posts since

February, many of you drive, walk, run, ride bikes, exercise, etc. I am so jealous. I'm thinking what happened to me? The day I was struck down with lack of oxygen, Sep 2008, is the day I had to be on oxygen 24/7. How can I possibly be so bad off so soon? Of course I realize it did not happen over night, but from breathing on my own to this - I just can't get my mind wrapped around this. What is frusting me is with prednisone and cytoxin I am getting worse. > > I am on my way to the Cleveland Clinic 22 Jun for testing for qualification for a transplant. I am very nervous. Annnnnd just don't understand how I got to this point so darned fast. I don't understand why my lungs are getting worse. I'm not sick/well no fevers stuff like that, I don't cough but once in a great while. Please understand, I am not complaining, I actually feel privledged that I can get oxy so I can breath, and I have a chance to have new lungs, WOW! I know I should be

asking my doctor these questions - I have - my OSU surgeon who told me I have advanced stages told me this happens all the time to people with fibrosis. They seem fine one day and are completly down the next day ......... Why?> > OK, I know no one can really answer that question, but I have to ask. I was always getting knuckled on the head for asking the sisters at Catholic School questions that they couldn't answer, but someone had to ask.> > Thanks> ellen>