Re: Re: Off Subject..

[Guest guest]



Peggy.... we've known for the past 4-5 years that we would need to move closer to Lysa/family. Now here the time is! I'm feeling sad to leave our little Canby-town but I know it's for the best.

Thank God we have kids that want us closer and we can rely on.

After I get the laptop I'll look at the trays. Did you like the bean bag thing?? I've seen those, are the stable enough?

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>