Re: Why are my lungs sooooo bad?

[Guest guest]

Ellen,

I'm so sorry you are going through this and sorrier still that things are moving so fast. The truth of the matter is there is no explanation. These diseases affect each person in a different way and there is no clear pattern or check list of what to expect.

Some types of ILD seem to move very slowly with long periods of stability and some aggressive forms move very swiftly to incapacitate the sufferer. I'm sorry. I wish there was something I could say to help it all make sense.

Please let us know how your transplant evalutaion goes. We will all be thinking of you.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, July 8, 2009 10:45:26 PMSubject: Why are my lungs sooooo bad?

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.Thanksellen

[Guest guest]

Ellen

that is an excellent question

unfortunately there are a lot of unknowns about this disease

good luck with the transplant evaluation

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: 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.Thanksellen

[Guest guest]

Ellen... I have to 'fess up, I have a hard time remembering all the new ones and what information goes with which person...

I don't remember if I have welcomed you to our board or not. But here's a welcome!

It is scary to be basically ok and all of a sudden having to use O2 and face a fatal disease.

I don't think there is one answer for your question. I've been on the board over 3 years and have heard that question numerous times...why?

This disease strikes us all differently, at different ages and in different ways. Some are gone in 3-5 years and many live 10, 12, 13 years and beyond.

Use your energy to learn about this disease so YOU can help OTHERS as well as yourself.

Do what you can and don't be shy to say "NO" when you can't.

Are your doc's aware you are getting worse on meds??

I'm a question person too so don't hesitate to ask yours.

Have a good day today.

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

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.Thanksellen

[Guest guest]

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 FL

IPF 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]

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 FL

IPF 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

> >

>