Re: thanks for the response

[Guest guest]

For whatever reason, sweeping and making the bed with clean sheets are

particularly hard to do. It wipes me out. I did pulmonary rehab and continue to

battle the evil treadmill in the gym but sweeping and clean sheets still wipe me

out.

I had double pneumonia when my nightmare ordeal started. I thought my doc was

nuts when he said it would take 2 years to recover from the pneumonia. He was

actually pretty close. After living with my lungs since then I know now most of

the time when something is real or just anxiety. For now my drug of choice is

Ativan. My neuro guy is sending me to a psychiatrist to " deal with stress " .

That was a new development this week. Long disturbing story. Anyway when in

doubt about real or anxiety I always just take an Ativan. Either way it helps

my breathing.

S, Lubbock, TX

NSIP w/PF 12/2006 et al

> > >

> > > Hello all, I'm new here as of today 11/22/09. Six weeks ago I was

hospitalized with pneumonia which became double pneumonia and quickly sent me to

ICU, ventilator pending (thank God I didn't have to go on the vent). I spent

two weeks in the hospital, was home 3 weeks and then readmitted a week ago

Friday with bilateral pulmonary emboli discovered from a CT scan to check extent

of pulmonary fibrosis. I was put on heparin until my coumadin level became

theraputic and then discharged. My physician told me that it appeared that the

fibrosis was minimal, but is running protein and enzyme levels to check for

abnormalities. Right now I'm feeling frustrated and impatient. I have oxygen

which I was using less and less, but now since the emboli I find I'm more tired,

short of breath, chest (lung area) pain, achy in general with random low grade

fevers 99.2 to 100. I'm a nurse and have most of my experience in ER/critical

care/cardiac cath lab, however, I am not handling this very well in my head and

feel confused and just sort of dangling in space not sure what exactly is going

on. Has anyone else had this feeling while their diagnosis was being confirmed?

I'm never sure short of breath is " too much " and I should be seen. Yesterday day

was pretty bad and I wore oxygen most of the day, today not so bad. Haven't used

the oxygen once. Thanks so much for letting me ramble on and I am looking

forward to your responses.

> > >

> > > Thanks again from a newbie,

> > >

> > >

> >

>

[Guest guest]

karen

i didn't read your introduction yet

will do so later

in the meantime

welcome

sorry you need us

but glad you found us

two words or sentences of advice:

get an oximeter -- the thing you put on your finger to measure you oxygen level -- it does vary throughout the day depending on your activity -- with it you will know when you need to use O2 and how many liters per minute you will need -- these things vary

go to a teaching hospital that has a department specializing in interstitial lung diseases

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: thanks for the responseTo: Breathe-Support Date: Sunday, November 22, 2009, 10:03 PM

Hi Dave and thanks for the response. I too have xanax and have taken it when I've wondered if my shortness of breath wasn't just anxiety. Between that and oxygen I've been able, at times, to convince myself I don't feel quite so yucky...until I try to do something exciting like seperate laundry or sweep the floor. But the illusion is good while it lasts......lol, > >> > Hello all, I'm new here as of today 11/22/09. Six weeks ago I was hospitalized with pneumonia which became double pneumonia and quickly sent me to ICU, ventilator pending (thank God I didn't have to go on the vent). I spent two weeks in the hospital, was home 3 weeks and then readmitted a week

ago Friday with bilateral pulmonary emboli discovered from a CT scan to check extent of pulmonary fibrosis. I was put on heparin until my coumadin level became theraputic and then discharged. My physician told me that it appeared that the fibrosis was minimal, but is running protein and enzyme levels to check for abnormalities. Right now I'm feeling frustrated and impatient. I have oxygen which I was using less and less, but now since the emboli I find I'm more tired, short of breath, chest (lung area) pain, achy in general with random low grade fevers 99.2 to 100. I'm a nurse and have most of my experience in ER/critical care/cardiac cath lab, however, I am not handling this very well in my head and feel confused and just sort of dangling in space not sure what exactly is going on. Has anyone else had this feeling while their diagnosis was being confirmed? I'm never sure short of breath is "too much" and I should be seen. Yesterday day was pretty bad

and I wore oxygen most of the day, today not so bad. Haven't used the oxygen once. Thanks so much for letting me ramble on and I am looking forward to your responses.> > > > Thanks again from a newbie,> > > >>