Re: Back from chest x-ray Caro

[Guest guest]

Let's go see Mickey Mouse.

Glad you went. I had pneumonia in the same way and Levaquin and

Prednisone followed. Sounded like that with you. I suspect within a

very few days you'll find yourself breathing much better and with

most of the discomfort gone.

Sometimes, I think they put " end stage " the day they diagnose us.

Guess we're all in end stage in some minds. Just sure doesn't fit my

definition. You're sure not there if you're not on oxygen yet.

However, I am shocked that your sats are staying up without oxygen

particularly with the pneumonia and weak breathing. What happened on

a six minute walk? I'm guessing you have no oximeter? It really

worries me that you could need oxygen and aren't getting it because

of the implications to your other organs.

Sounds to me like you have more than a little time left, but you need

to be aggressive in insisting on good treatment. The fact you dropped

to the level you just did with pneumonia in both lungs concerns me.

What were you getting on the spirometer in the hospital? If you

weren't over 1000 they shouldn't have sent you home. Also, the lack

of oxygen. Anxious to hear what measurements of saturation you've

had.

When are you scheduled to see your pulmonologist again?

And you're going to see Mickey. Make that an absolute goal and do it.

Now is the time to not think what end stage is or means or any

statistics but to focus on living life the best you possibly can as

soon as the pneumonia is gone.

>

> Hi all,

>

> First off, I haven't read any posts since last night, but was

> wondering has anyone heard from Joyce or Irene yet? I hope they

are

> both doing well today.

>

> I went this morning and had my chest x-ray. No pleurisy as they

> thought, just pneumonia in both lungs, worse on the right. He said

I

> was barely pulling any air through. ER doc said it was so bad he

> could have diagnosed it without a chest x-ray! Sent home on

> prednisone and Levaquin, followup with pulmo next week. The thing

> that got me was they hand me this sheet of paper with my orders on

it

> and under Clinical Indication for chest x-ray it says " SOB on

> inspiration, 11 days status post right lung biopsy, END STAGE LUNG

> DISEASE. "

>

> Nobody told ME it was end stage!! How come I didn't know it had

> gotten that bad? I was thinking I was doing fairly well, as I have

> not even been placed on home O2 yet!! I was thinking I had a

little

> time left, now I don't know.

>

> And the darndest thing of all is that I STILL have not seen MICKEY

> MOUSE in person yet!!!

>

> Caro

>

[Guest guest]

I am ready, Bruce - Let's go!!!! Well after the pneuomnia is better anyway!! LOL!! I hope you are right about feeling better in a few days. I am sure hoping so. Doc asked, "when does it hurt?" I said, "only when I breathe!!" LOL!! They didn't have me do a 6-minute walk. They do have me do another Incentive Spirometry and I couldn't get above 500. They told me to take it home and keep practicing!! My sats were around 85 this trip, so I am guessing that is why they let me go. When I was in with the lung biopsy they dropped to 79, but when they put me back on the oxygen, they went back up to 98. I was supposed to see my pulmo doc yesterday, but unfortunately, he is "stuck out of the country in India" and can't get anyone to stamp his VISA so he can return to the US. Something to do with red tape, they said. Anyway, they rescheduled me for February 13, but the ER

doc said to follow up next week, so I will call them Monday, I guess, and see if he is back yet. Is a small town here (only about 25,000) and he is the only pulmo doc in town. Doesn't even have anyone to cover for him when he is out. You are right, though, about Mickey!! Definitely on my BUCKET LIST at the top!! I haven't seen the movie yet, but I can only imagine!! Hope you are feeling better soon yourself and thanks so much for being such a great friend. CaroBruce Moreland wrote: Let's go see Mickey Mouse.Glad you went. I had pneumonia in the same way and Levaquin and Prednisone followed. Sounded like that with you. I suspect within a very few days you'll find yourself breathing much better and with most of the discomfort gone. Sometimes, I think they put "end stage" the day they diagnose us. Guess we're all in end stage in some minds. Just sure doesn't fit my definition. You're sure not there if you're not on oxygen yet. However, I am shocked that your sats are staying up without oxygen particularly with the pneumonia and weak breathing. What happened on a six minute walk? I'm guessing you have no oximeter? It really worries me that you could need oxygen and aren't getting it because of the implications to your other organs. Sounds to me like you have more than a little time left, but you

need to be aggressive in insisting on good treatment. The fact you dropped to the level you just did with pneumonia in both lungs concerns me. What were you getting on the spirometer in the hospital? If you weren't over 1000 they shouldn't have sent you home. Also, the lack of oxygen. Anxious to hear what measurements of saturation you've had. When are you scheduled to see your pulmonologist again? And you're going to see Mickey. Make that an absolute goal and do it. Now is the time to not think what end stage is or means or any statistics but to focus on living life the best you possibly can as soon as the pneumonia is gone.>> Hi all, > > First off, I haven't read any posts since last night, but was > wondering has anyone

heard from Joyce or Irene yet? I hope they are > both doing well today. > > I went this morning and had my chest x-ray. No pleurisy as they > thought, just pneumonia in both lungs, worse on the right. He said I > was barely pulling any air through. ER doc said it was so bad he > could have diagnosed it without a chest x-ray! Sent home on > prednisone and Levaquin, followup with pulmo next week. The thing > that got me was they hand me this sheet of paper with my orders on it > and under Clinical Indication for chest x-ray it says "SOB on > inspiration, 11 days status post right lung biopsy, END STAGE LUNG > DISEASE." > > Nobody told ME it was end stage!! How come I didn't know it had > gotten that bad? I was thinking I was doing fairly well, as I have > not even been placed on home O2 yet!! I was thinking I had a little > time left, now I don't

know. > > And the darndest thing of all is that I STILL have not seen MICKEY > MOUSE in person yet!!!> > Caro>CaroAsthma 1976,Osteoarthritis 2002, COPD 02/06, IPF 08/06, UIP 01/08Mississippi

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

85. you need to be on oxygen quickly. Make sure to get to him

immediately upon his return. If he's going to be delayed have surgeon

prescribe until he does return or even your primary....he can

certainly do a six minute walk. But every day below 90 is bad for

you.

I was told when I went home to use spirometer every two hours at

least. I'll bet by Monday you're at 1000. Betting by a week from

Monday 1500 especially if you get some oxygen by then. One more

reason you need it.

> >

> > Hi all,

> >

> > First off, I haven't read any posts since last night, but was

> > wondering has anyone heard from Joyce or Irene yet? I hope they

> are

> > both doing well today.

> >

> > I went this morning and had my chest x-ray. No pleurisy as they

> > thought, just pneumonia in both lungs, worse on the right. He

said

> I

> > was barely pulling any air through. ER doc said it was so bad he

> > could have diagnosed it without a chest x-ray! Sent home on

> > prednisone and Levaquin, followup with pulmo next week. The thing

> > that got me was they hand me this sheet of paper with my orders

on

> it

> > and under Clinical Indication for chest x-ray it says " SOB on

> > inspiration, 11 days status post right lung biopsy, END STAGE

LUNG

> > DISEASE. "

> >

> > Nobody told ME it was end stage!! How come I didn't know it had

> > gotten that bad? I was thinking I was doing fairly well, as I

have

> > not even been placed on home O2 yet!! I was thinking I had a

> little

> > time left, now I don't know.

> >

> > And the darndest thing of all is that I STILL have not seen

MICKEY

> > MOUSE in person yet!!!

> >

> > Caro

> >

>

>

>

>

>

>

> Caro

> Asthma 1976,Osteoarthritis 2002, COPD 02/06, IPF 08/06, UIP 01/08

> Mississippi

>

> ---------------------------------

> Looking for last minute shopping deals? Find them fast with Yahoo!

Search.

>

[Guest guest]

How far to nearest large city? Nearest teaching hospital with

pulmonology program? Not saying to make change but just curious as to

other future resources when you need them.

> > >

> > > Hi all,

> > >

> > > First off, I haven't read any posts since last night, but was

> > > wondering has anyone heard from Joyce or Irene yet? I hope they

> > are

> > > both doing well today.

> > >

> > > I went this morning and had my chest x-ray. No pleurisy as they

> > > thought, just pneumonia in both lungs, worse on the right. He

> said

> > I

> > > was barely pulling any air through. ER doc said it was so bad

he

> > > could have diagnosed it without a chest x-ray! Sent home on

> > > prednisone and Levaquin, followup with pulmo next week. The

thing

> > > that got me was they hand me this sheet of paper with my orders

> on

> > it

> > > and under Clinical Indication for chest x-ray it says " SOB on

> > > inspiration, 11 days status post right lung biopsy, END STAGE

> LUNG

> > > DISEASE. "

> > >

> > > Nobody told ME it was end stage!! How come I didn't know it had

> > > gotten that bad? I was thinking I was doing fairly well, as I

> have

> > > not even been placed on home O2 yet!! I was thinking I had a

> > little

> > > time left, now I don't know.

> > >

> > > And the darndest thing of all is that I STILL have not seen

> MICKEY

> > > MOUSE in person yet!!!

> > >

> > > Caro

> > >

> >

> >

> >

> >

> >

> >

> > Caro

> > Asthma 1976,Osteoarthritis 2002, COPD 02/06, IPF 08/06, UIP 01/08

> > Mississippi

> >

> > ---------------------------------

> > Looking for last minute shopping deals? Find them fast with

Yahoo!

> Search.

> >

>

[Guest guest]

They told me to use the spirometer every 2 hours, too, and unfortunately, I have been falling short. Sometimes I forget and don't even use it once a day. Guess I had better get back on track with that thing whether it makes me tired and cough or not. The nearest large city from South would be , the capital, and it is about 2 hours away. I have heard they have a really good PF CLinic in Birmingham which is about 4 to 5 hours away. I think they have several good ones on the Gulf Coast and in New Orleans, too, which would be about 3 hours away. CaroBruce Moreland wrote: How far to nearest large city? Nearest teaching hospital with pulmonology program? Not saying to make change but just curious as to other future resources when you need them.> > >> > > Hi all, > > > > > > First off, I haven't read any posts since last night, but was > > > wondering has anyone heard from Joyce or Irene yet? I hope they > > are > > > both doing well today. > > > > > > I went this morning and had my chest x-ray. No pleurisy as they > > > thought, just pneumonia in both lungs, worse on the right. He > said > > I > > > was barely pulling any air through. ER doc said it was so bad he > > > could have diagnosed it without a chest x-ray! Sent home on > > > prednisone and Levaquin, followup with

pulmo next week. The thing > > > that got me was they hand me this sheet of paper with my orders > on > > it > > > and under Clinical Indication for chest x-ray it says "SOB on > > > inspiration, 11 days status post right lung biopsy, END STAGE > LUNG > > > DISEASE." > > > > > > Nobody told ME it was end stage!! How come I didn't know it had > > > gotten that bad? I was thinking I was doing fairly well, as I > have > > > not even been placed on home O2 yet!! I was thinking I had a > > little > > > time left, now I don't know. > > > > > > And the darndest thing of all is that I STILL have not seen > MICKEY > > > MOUSE in person yet!!!> > > > > > Caro> > >> > > > > > > > > > >

> > > Caro> > Asthma 1976,Osteoarthritis 2002, COPD 02/06, IPF 08/06, UIP 01/08> > Mississippi> > > > ---------------------------------> > Looking for last minute shopping deals? Find them fast with Yahoo! > Search.> >>CaroAsthma 1976,Osteoarthritis 2002, COPD 02/06, IPF 08/06, UIP 01/08Mississippi

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Ah didn't know you were in Mississippi. That does present problems. I

don't know fully about hospitals in , but do know no hospital

in Mississippi provides transplants which is often a good indication.

University of Alabama in Birmingham does. Where in Mississippi? I

lived a year and half in the Delta. I think ultimately you may at the

least need a combination of local and distant care. And, once I had

to drive 2 hours I'd drive a bit more if necessary for better. It's

unfortunate there are areas with just minimal coverage. I would

really look at Birmingham and do it while you're still very mobile.

And if you don't use your spirometer, no Mickey Mouse for you...lol

> > > >

> > > > Hi all,

> > > >

> > > > First off, I haven't read any posts since last night, but was

> > > > wondering has anyone heard from Joyce or Irene yet? I hope

they

> > > are

> > > > both doing well today.

> > > >

> > > > I went this morning and had my chest x-ray. No pleurisy as

they

> > > > thought, just pneumonia in both lungs, worse on the right. He

> > said

> > > I

> > > > was barely pulling any air through. ER doc said it was so bad

> he

> > > > could have diagnosed it without a chest x-ray! Sent home on

> > > > prednisone and Levaquin, followup with pulmo next week. The

> thing

> > > > that got me was they hand me this sheet of paper with my

orders

> > on

> > > it

> > > > and under Clinical Indication for chest x-ray it says " SOB on

> > > > inspiration, 11 days status post right lung biopsy, END STAGE

> > LUNG

> > > > DISEASE. "

> > > >

> > > > Nobody told ME it was end stage!! How come I didn't know it

had

> > > > gotten that bad? I was thinking I was doing fairly well, as I

> > have

> > > > not even been placed on home O2 yet!! I was thinking I had a

> > > little

> > > > time left, now I don't know.

> > > >

> > > > And the darndest thing of all is that I STILL have not seen

> > MICKEY

> > > > MOUSE in person yet!!!

> > > >

> > > > Caro

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > Caro

> > > Asthma 1976,Osteoarthritis 2002, COPD 02/06, IPF 08/06, UIP

01/08

> > > Mississippi

> > >

> > > ---------------------------------

> > > Looking for last minute shopping deals? Find them fast with

> Yahoo!

> > Search.

> > >

> >

>

>

>

>

>

>

> Caro

> Asthma 1976,Osteoarthritis 2002, COPD 02/06, IPF 08/06, UIP 01/08

> Mississippi

>

> ---------------------------------

> Be a better friend, newshound, and know-it-all with Yahoo! Mobile.

Try it now.

>

[Guest guest]

Ok, you got me!! That's the best incentive I would need for an "incentive spirometer!!" They should have put that on the label!! LOL!! You actually lived in the Delta, too? What a small world!! I lived here in Greenwood from birth to age 25, left and moved to , and just moved back in September due to illness and most of my family live here. My boyfriend (if you can call him that) lives in Ridgeland, and he is not very supportive, so I moved back here to be near family. Even though the city is small and quite boring after living in , I am very thankful to have my family close by. They have really helped me a lot. Where did you live here? CaroBruce Moreland wrote: Ah didn't know you were in Mississippi. That does present problems. I don't know fully about hospitals in , but do know no hospital in Mississippi provides transplants which is often a good indication. University of Alabama in Birmingham does. Where in Mississippi? I lived a year and half in the Delta. I think ultimately you may at the least need a combination of local and distant care. And, once I had to drive 2 hours I'd drive a bit more if necessary for better. It's unfortunate there are areas with just minimal coverage. I would really look at Birmingham and do it while you're still very mobile.And if you

don't use your spirometer, no Mickey Mouse for you...lol> > > >> > > > Hi all, > > > > > > > > First off, I haven't read any posts since last night, but was > > > > wondering has anyone heard from Joyce or Irene yet? I hope they > > > are > > > > both doing well today. > > > > > > >

> I went this morning and had my chest x-ray. No pleurisy as they > > > > thought, just pneumonia in both lungs, worse on the right. He > > said > > > I > > > > was barely pulling any air through. ER doc said it was so bad > he > > > > could have diagnosed it without a chest x-ray! Sent home on > > > > prednisone and Levaquin, followup with pulmo next week. The > thing > > > > that got me was they hand me this sheet of paper with my orders > > on > > > it > > > > and under Clinical Indication for chest x-ray it says "SOB on > > > > inspiration, 11 days status post right lung biopsy, END STAGE > > LUNG > > > > DISEASE." > > > > > > > > Nobody told ME it was end stage!! How come I didn't know it had > > > > gotten that

bad? I was thinking I was doing fairly well, as I > > have > > > > not even been placed on home O2 yet!! I was thinking I had a > > > little > > > > time left, now I don't know. > > > > > > > > And the darndest thing of all is that I STILL have not seen > > MICKEY > > > > MOUSE in person yet!!!> > > > > > > > Caro> > > >> > > > > > > > > > > > > > > > > > > > > Caro> > > Asthma 1976,Osteoarthritis 2002, COPD 02/06, IPF 08/06, UIP 01/08> > > Mississippi> > > > > > ---------------------------------> > > Looking for last minute shopping deals? Find them fast with > Yahoo! > > Search.> > >> >>

> > > > > > Caro> Asthma 1976,Osteoarthritis 2002, COPD 02/06, IPF 08/06, UIP 01/08> Mississippi> > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.>CaroAsthma 1976,Osteoarthritis 2002, COPD 02/06, IPF 08/06, UIP 01/08Mississippi

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.