Re: Re: Why are my lungs sooooo bad?

[Guest guest]

interesting how everyone is so different

increased doses of prednisone helped me and cellcept is also helping, so we could decrease the prednisone

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?To: Breathe-Support Date: Thursday, July 9, 2009, 2:31 PM

Ellen, In July 07 I started Prednisone and Cellcept (a transplant drug similar to Cytoxin.) Just like you I progressed while on the medication. My PFT's were much worse, scarring progressed, coughing was unbearable. I was truely at my worst physically and mentally. In this case my Pulmo At Mayo in ville and I chose to wean of the meds. It's been a few years now. I lost some of the extra weight and my breathing is almost back to where it was just before starting the meds.I still haven't been able to lose enough weight in order to have the transplant evaluation. Weight has been my greastest struggle since Prednisone. I do drive, shop and meet with friends all with my oxygen.I used to love riding my bike and walking the streets with my neighbors. I now have resigned to lots of reading, sewing, and I've even learned to love doing laundry (who would've thunk it?!)Please be sure to discuss your concerns with the

doc! 33 FLIPF dx 1/06 >> 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]

Hi Joyce,I am also on prednisone and Cellcept. What dosage are you on? Have your doctors given you any advice or precautions about cellcept?Thanks!Janie (55; IPF 10/04; WI)Every day and in every way, I'm getting better and better.

From: hunnybunnybinky <brandy (AT) burnspc (DOT) com>Subject: Re: Why are my lungs sooooo bad?To: Breathe-Support@ yahoogroups. comDate: Thursday, July 9, 2009, 2:31 PM

Ellen, In July 07 I started Prednisone and Cellcept (a transplant drug similar to Cytoxin.) Just like you I progressed while on the medication. My PFT's were much worse, scarring progressed, coughing was unbearable. I was truely at my worst physically and mentally. In this case my Pulmo At Mayo in ville and I chose to wean of the meds. It's been a few years now. I lost some of the extra weight and my breathing is almost back to where it was just before starting the meds.I still haven't been able to lose enough weight in order to have the transplant evaluation. Weight has been my greastest struggle since Prednisone. I do drive, shop and meet with friends all with my oxygen.I used to love riding my bike and walking the streets with my neighbors. I now have resigned to lots of reading, sewing, and I've even learned to love doing laundry (who would've thunk it?!)Please be sure to discuss your concerns with the

doc! 33 FLIPF dx 1/06 >> 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]

janie

this is second respnse--deleted other one by mistake

just got laptop

not used to keyboaerd

1000 mg cellcept daily

10 mg prednisone

down from 40mgs

plan is to stay on 10 mgs

on mepron -- anti biotyic to go with cellcet

be consistent -- take 12 hours apart

transplant pharmacist said to take with food --less upseetting to tummy

pulmonary doc said if upset tummy--eat probiotic yogurt

literature says stay outnof sun

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: Why are my lungs sooooo bad?To: Breathe-Support Date: Monday, July 20, 2009, 3:09 PM

Hi Joyce,I am also on prednisone and Cellcept. What dosage are you on? Have your doctors given you any advice or precautions about cellcept?Thanks!Janie (55; IPF 10/04; WI)Every day and in every way, I'm getting better and better.

From: hunnybunnybinky <brandy (AT) burnspc (DOT) com>Subject: Re: Why are my lungs sooooo bad?To: Breathe-Support@ yahoogroups. comDate: Thursday, July 9, 2009, 2:31 PM

Ellen, In July 07 I started Prednisone and Cellcept (a transplant drug similar to Cytoxin.) Just like you I progressed while on the medication. My PFT's were much worse, scarring progressed, coughing was unbearable. I was truely at my worst physically and mentally. In this case my Pulmo At Mayo in ville and I chose to wean of the meds. It's been a few years now. I lost some of the extra weight and my breathing is almost back to where it was just before starting the meds.I still haven't been able to lose enough weight in order to have the transplant evaluation. Weight has been my greastest struggle since Prednisone. I do drive, shop and meet with friends all with my oxygen.I used to love riding my bike and walking the streets with my neighbors. I now have resigned to lots of reading, sewing, and I've even learned to love doing laundry (who would've thunk it?!)Please be sure to discuss your concerns with the

doc! 33 FLIPF dx 1/06 >> 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]

Hi Joyce,I'm on 2000 mg Cellcept daily 7 mg prednisone (which they're trying to taper to 5)I was told to take the Cellcept on an empty stomach and wait an hour before eating. I started on Imuran but couldn't tolerate it. It gets so confusing, doesn't it? Why are you now inactive on the transplant list?Janie (55; IPF 10/04; WI)Every day and in every way, I'm getting better and better.

From: hunnybunnybinky <brandy (AT) burnspc (DOT) com>Subject: Re: Why are my lungs sooooo bad?To: Breathe-Support@ yahoogroups. comDate: Thursday, July 9, 2009, 2:31 PM

Ellen, In July 07 I started Prednisone and Cellcept (a transplant drug similar to Cytoxin.) Just like you I progressed while on the medication. My PFT's were much worse, scarring progressed, coughing was unbearable. I was truely at my worst physically and mentally. In this case my Pulmo At Mayo in ville and I chose to wean of the meds. It's been a few years now. I lost some of the extra weight and my breathing is almost back to where it was just before starting the meds.I still haven't been able to lose enough weight in order to have the transplant evaluation. Weight has been my greastest struggle since Prednisone. I do drive, shop and meet with friends all with my oxygen.I used to love riding my bike and walking the streets with my neighbors. I now have resigned to lots of reading, sewing, and I've even learned to love doing laundry (who would've thunk it?!)Please be sure to discuss your concerns with the

doc! 33 FLIPF dx 1/06 >> 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]

JANIE

because my disease is responding to the prednisone and cellcept

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: Why are my lungs sooooo bad?To: Breathe-Support Date: Monday, July 20, 2009, 11:13 PM

Hi Joyce,I'm on 2000 mg Cellcept daily 7 mg prednisone (which they're trying to taper to 5)I was told to take the Cellcept on an empty stomach and wait an hour before eating. I started on Imuran but couldn't tolerate it. It gets so confusing, doesn't it? Why are you now inactive on the transplant list?Janie (55; IPF 10/04; WI)Every day and in every way, I'm getting better and better.

From: hunnybunnybinky <brandy (AT) burnspc (DOT) com>Subject: Re: Why are my lungs sooooo bad?To: Breathe-Support@ yahoogroups. comDate: Thursday, July 9, 2009, 2:31 PM

Ellen, In July 07 I started Prednisone and Cellcept (a transplant drug similar to Cytoxin.) Just like you I progressed while on the medication. My PFT's were much worse, scarring progressed, coughing was unbearable. I was truely at my worst physically and mentally. In this case my Pulmo At Mayo in ville and I chose to wean of the meds. It's been a few years now. I lost some of the extra weight and my breathing is almost back to where it was just before starting the meds.I still haven't been able to lose enough weight in order to have the transplant evaluation. Weight has been my greastest struggle since Prednisone. I do drive, shop and meet with friends all with my oxygen.I used to love riding my bike and walking the streets with my neighbors. I now have resigned to lots of reading, sewing, and I've even learned to love doing laundry (who would've thunk it?!)Please be sure to discuss your concerns with the

doc! 33 FLIPF dx 1/06 >> 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]

Pink...what laptop did you buy? I'm going shopping for one....

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: Why are my lungs sooooo bad?To: Breathe-Support@ yahoogroups. comDate: Thursday, July 9, 2009, 2:31 PM

Ellen, In July 07 I started Prednisone and Cellcept (a transplant drug similar to Cytoxin.) Just like you I progressed while on the medication. My PFT's were much worse, scarring progressed, coughing was unbearable. I was truely at my worst physically and mentally. In this case my Pulmo At Mayo in ville and I chose to wean of the meds. It's been a few years now. I lost some of the extra weight and my breathing is almost back to where it was just before starting the meds.I still haven't been able to lose enough weight in order to have the transplant evaluation. Weight has been my greastest struggle since Prednisone. I do drive, shop and meet with friends all with my oxygen.I used to love riding my bike and walking the streets with my neighbors. I now have resigned to lots of reading, sewing, and I've even learned to love doing laundry (who would've thunk it?!)Please be sure to discuss your concerns with the doc! 33 FLIPF dx 1/06 >> 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]

Pink....whoops, I missed this mail.

Are you pleased with the 15 in??

I'm concerned about flat keys...I'm hoping I may find one with keys raised a bit.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: Why are my lungs sooooo bad?To: Breathe-Support@ yahoogroups. comDate: Thursday, July 9, 2009, 2:31 PM

Ellen, In July 07 I started Prednisone and Cellcept (a transplant drug similar to Cytoxin.) Just like you I progressed while on the medication. My PFT's were much worse, scarring progressed, coughing was unbearable. I was truely at my worst physically and mentally. In this case my Pulmo At Mayo in ville and I chose to wean of the meds. It's been a few years now. I lost some of the extra weight and my breathing is almost back to where it was just before starting the meds.I still haven't been able to lose enough weight in order to have the transplant evaluation. Weight has been my greastest struggle since Prednisone. I do drive, shop and meet with friends all with my oxygen.I used to love riding my bike and walking the streets with my neighbors. I now have resigned to lots of reading, sewing, and I've even learned to love doing laundry (who would've thunk it?!)Please be sure to discuss your concerns with the doc! 33 FLIPF dx 1/06 >> 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 can carry the 15 inch

still getting used to the keys

still getting used to the computer,

right now i'm using the old computer

got the lap top because there are days when i cannot sit at the desk

wonder, if i will be able to use the lap top while lying in bed -- that's why i got it instead of another desk top

prefer the desk top keyboard

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: Why are my lungs sooooo bad?To: Breathe-Support Date: Sunday, July 26, 2009, 1:56 PM

Pink....whoops, I missed this mail.

Are you pleased with the 15 in??

I'm concerned about flat keys...I'm hoping I may find one with keys raised a bit.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: Why are my lungs sooooo bad?To: Breathe-Support@ yahoogroups. comDate: Thursday, July 9, 2009, 2:31 PM

Ellen, In July 07 I started Prednisone and Cellcept (a transplant drug similar to Cytoxin.) Just like you I progressed while on the medication. My PFT's were much worse, scarring progressed, coughing was unbearable. I was truely at my worst physically and mentally. In this case my Pulmo At Mayo in ville and I chose to wean of the meds. It's been a few years now. I lost some of the extra weight and my breathing is almost back to where it was just before starting the meds.I still haven't been able to lose enough weight in order to have the transplant evaluation. Weight has been my greastest struggle since Prednisone. I do drive, shop and meet with friends all with my oxygen.I used to love riding my bike and walking the streets with my neighbors. I now have resigned to lots of reading, sewing, and I've even learned to love doing laundry (who would've thunk it?!)Please be sure to discuss your concerns with the

doc! 33 FLIPF dx 1/06 >> 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]

Joyce, There is a wireless keyboard that is like a regular one that has software you put in your computer and no wires.You will be able to use your laptop about anywhere. I dumped a glass of water in mine but it still works.. I just have to keep it plugged in to power.. I am going to have to put it in the shop when I think I can do without it for a few days..lol Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. i can carry the 15 inch still getting used to the keys still getting used to the computer, right now i'm using the old computer got the lap top because there are days when i cannot sit at the desk wonder, if i will be able to use the lap top while lying in bed -- that's why i got it instead of another desk top prefer the desk top keyboard Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- On Sun, 7/26/09, Sher Bauman <bofus (AT) wbcable (DOT) net> wrote: From: Sher Bauman <bofus (AT) wbcable (DOT) net>Subject: Re: Re: Why are my lungs sooooo bad?To: Breathe-Support Date: Sunday, July 26, 2009, 1:56 PM Pink....whoops, I missed this mail. Are you pleased with the 15 in?? I'm concerned about flat keys...I'm hoping I may find one with keys raised a bit. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Why are my lungs sooooo bad?To: Breathe-Support@ yahoogroups. comDate: Thursday, July 9, 2009, 2:31 PM Ellen, In July 07 I started Prednisone and Cellcept (a transplant drug similar to Cytoxin.) Just like you I progressed while on the medication. My PFT's were much worse, scarring progressed, coughing was unbearable. I was truely at my worst physically and mentally. In this case my Pulmo At Mayo in ville and I chose to wean of the meds. It's been a few years now. I lost some of the extra weight and my breathing is almost back to where it was just before starting the meds.I still haven't been able to lose enough weight in order to have the transplant evaluation. Weight has been my greastest struggle since Prednisone. I do drive, shop and meet with friends all with my oxygen.I used to love riding my bike and walking the streets with my neighbors. I now have resigned to lots of reading, sewing, and I've even learned to love doing laundry (who would've thunk it?!)Please be sure to discuss your concerns with the doc! 33 FLIPF dx 1/06 >> 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>