Why are my lungs sooooo bad?

[Guest guest]

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

[Guest guest]

I have no answer for you, except that we are all in this together. I realize that it is very little consolation and not the response that you would like. There is no pattern, no rhyme or reason to any of this.It is scary, miserable, and even lonely. But this board will help, even if you just read it, without responding. I am more often than not on the sidelines, but I read items here everyday.Try to stay positive, but also vent all you want here. On this board, with all the wonderful people on it, you can speak your mind, your fears and the things that make you nervous. Someone somewhere will have an answer, a thought or a cyber shoulder to cry on. Meds are a pain, o2 is a drag, but keep working with your doc, to find what works for

you.Later,IPF/NSIP 08Subject: Why are my lungs sooooo bad?To: Breathe-Support Date: Wednesday, July 8, 2009, 10:45 PM

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