Re: Re: Why are my lungs sooooo bad?

[Guest guest]

some how this went into my drafts

so i am sending it now

Janie

just got new computer

not used tolap top keyboard

on 1000 mgs cellcept twice daily

down to 10 mgs prednisone

will probably stay there'

was up to 40 mgs prednisone prior to cellcept

don't remember what the docs said about cellcept

read the pamphlet that comes with it

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]

Sher, When you get your laptop you will need a tray for your lap. They get really hot after a while. It takes a little to get used to the key board but I know you will LOVE it.. ;]} Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. 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]



Peggy... we're off topic here but.... thanks for the tip for a tray.

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]

delll inspiron 15 inch

still getting used to 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: Saturday, July 25, 2009, 1:53 PM

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]

that is a neat tray, ;thanks for the info everyone on makeing life with a lap top easier

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: Sunday, July 26, 2009, 7:51 PM

Yes, you can use the laptop while lying in bed. I have a "lap desk" for my laptop and have my laptop in bed with me almost everynight. And when I'm not in bed I fold the legs in and use it in the living room recliner so i can see the tv and the puter :)The one I have is called "MyPlace" ( http://www.amazon. com/Place- Myplace-Laptop- Notebook- Workstation/ dp/B001CCTPLK )Walmart has one just like it in their generic packaging for $20. I take it from room to room. Life is so much easier with it. Sometimes Austin and Billy will be watching something I don't like and I just pop a movie in the laptop and the earbuds in and it looks like I'm actually spending time with them. If you have trouble finding one let me know. 34 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 have the My Place desk and there is one thing to watch out for. The fabric on my Lazy Boy recliner is a sort of a weave and the legs caught in the fabric and tore it. Bob taped up those legs so it isn't doing any more damage. I also bought a lap desk from Target. I like it but if I use it for too long it hurts my knees so I go back to the My Place.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: hunnybunnybinky <brandy (AT) burnspc (DOT) com>Subject: Re: Why are my lungs sooooo bad?To: Breathe-Support@ yahoogroups. comDate: Sunday, July 26, 2009, 7:51 PM

Yes, you can use the laptop while lying in bed. I have a "lap desk" for my laptop and have my laptop in bed with me almost everynight. And when I'm not in bed I fold the legs in and use it in the living room recliner so i can see the tv and the puter :)The one I have is called "MyPlace" ( http://www.amazon. com/Place- Myplace-Laptop- Notebook- Workstation/ dp/B001CCTPLK )Walmart has one just like it in their generic packaging for $20. I take it from room to room. Life is so much easier with it. Sometimes Austin and Billy will be watching something I don't like and I just pop a movie in the laptop and the earbuds in and it looks like I'm actually spending time with them. If you have trouble finding one let me know. 34 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>

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