Re: Oxygen update and changes in my symptoms

[Guest guest]

Hi everyone,

It's nne- I haven't posted in awhile. My portable O2 problem was FINALLY

solved last week. After repeated calls to my local Apria office (fyi- took your

advice Bruce and did not talk to cust service asked for manager) I now have my

Helios Marathon. They wanted the little Helios 300 back and I asked if I could

keep it since it is so light I use that one for the gym- I even asked manager

how much more it would cost me to rent it along with Marathon. He said he would

let me keep it AT NO EXTRA CHARGE! I was giddy with happiness, so now Pink Joyce

I too have a baby and toddler!

And now for my symptoms changing- I have developed problems sleeping similar to

what was happening before I got O2 at night- I wake up a lot and feel like I

haven't slept at all in the morning. This morning, I almost fell asleep driving

to work. Does this mean I need more than 2 LPM at night? I have also had more of

a cough that is not dry but mucousy- I know my lung biopsy diagnosis indicated I

had inflammation; sort of a combination of UIP, NSIP and hypersensitivity

pneumonitis(?)- so does this mean since I am developing cough am I getting

worse??? Cannot wait for Columbia evaluation on October 1-maybe I can get some

answers. I am only on prednisone 10 mgs and DO NOT want to increase this again.

Would NAC help? - nne, ILD 6/09

[Guest guest]

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: RE: Oxygen update and changes in my symptomsTo: Breathe-Support Date: Wednesday, September 16, 2009, 10:27 AM

Hi everyone, It's nne- I haven't posted in awhile. My portable O2 problem was FINALLY solved last week. After repeated calls to my local Apria office (fyi- took your advice Bruce and did not talk to cust service asked for manager) I now have my Helios Marathon. They wanted the little Helios 300 back and I asked if I could keep it since it is so light I use that one for the gym- I even asked manager how much more it would cost me to rent it along with Marathon. He said he would let me keep it AT NO EXTRA CHARGE! I was giddy with happiness, so now Pink Joyce I too have a baby and toddler!And now for my symptoms changing- I have developed problems sleeping similar to what was happening before I got O2 at night- I wake up a lot and feel like I haven't slept at all in the morning. This morning, I almost fell asleep driving to work. Does this mean I need more than 2 LPM at night? I have also had more of a cough that is not dry but mucousy- I

know my lung biopsy diagnosis indicated I had inflammation; sort of a combination of UIP, NSIP and hypersensitivity pneumonitis( ?)- so does this mean since I am developing cough am I getting worse??? Cannot wait for Columbia evaluation on October 1-maybe I can get some answers. I am only on prednisone 10 mgs and DO NOT want to increase this again. Would NAC help? - nne, ILD 6/09

[Guest guest]

marianne

glad you have both the baby and the toddler

one of the RTs at Penn told me that there is a patient who in addition to wheeling the o2 in a baby stroller, also dresses the o2 in baby clothes

did you get your oximeter?

that will help you determine how many lpm's you need

you need to talk to your doc about your cough

it could be something simple like allergy season or a cold or it could me something else

not sure what the nac does, but i do think it cleared the gook out of my lungs

you need to talk to your doc about the lpm's at night -- some people who have trouble sleeping go for sleep studies

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: RE: Oxygen update and changes in my symptomsTo: Breathe-Support Date: Wednesday, September 16, 2009, 10:27 AM

Hi everyone, It's nne- I haven't posted in awhile. My portable O2 problem was FINALLY solved last week. After repeated calls to my local Apria office (fyi- took your advice Bruce and did not talk to cust service asked for manager) I now have my Helios Marathon. They wanted the little Helios 300 back and I asked if I could keep it since it is so light I use that one for the gym- I even asked manager how much more it would cost me to rent it along with Marathon. He said he would let me keep it AT NO EXTRA CHARGE! I was giddy with happiness, so now Pink Joyce I too have a baby and toddler!And now for my symptoms changing- I have developed problems sleeping similar to what was happening before I got O2 at night- I wake up a lot and feel like I haven't slept at all in the morning. This morning, I almost fell asleep driving to work. Does this mean I need more than 2 LPM at night? I have also had more of a cough that is not dry but mucousy- I

know my lung biopsy diagnosis indicated I had inflammation; sort of a combination of UIP, NSIP and hypersensitivity pneumonitis( ?)- so does this mean since I am developing cough am I getting worse??? Cannot wait for Columbia evaluation on October 1-maybe I can get some answers. I am only on prednisone 10 mgs and DO NOT want to increase this again. Would NAC help? - nne, ILD 6/09

[Guest guest]

nne

I'm sure Columbia is requesting you forward them records. One thing many

don't think about is the biopsy slides. Especially with your mixed

diagnosis they will want to look at them with their own Pathologist.

So glad the oxygen situation has been resolved. Oxygen companies are

like so many other businesses, depersonalization and those without the

knowledge or the authority trying to make decisions as if they did. Now

to the manager, you're a real human being and you're important.

As to the sleep issue you discussed the only way to know is an overnight

oximeter. If that shows no problem or an adjustment doesn't help then it

will be time to see a sleep specialist and have a full sleep study.

>

> Hi everyone,

> It's nne- I haven't posted in awhile. My portable O2 problem was

FINALLY solved last week. After repeated calls to my local Apria office

(fyi- took your advice Bruce and did not talk to cust service asked for

manager) I now have my Helios Marathon. They wanted the little Helios

300 back and I asked if I could keep it since it is so light I use that

one for the gym- I even asked manager how much more it would cost me to

rent it along with Marathon. He said he would let me keep it AT NO EXTRA

CHARGE! I was giddy with happiness, so now Pink Joyce I too have a baby

and toddler!

> And now for my symptoms changing- I have developed problems sleeping

similar to what was happening before I got O2 at night- I wake up a lot

and feel like I haven't slept at all in the morning. This morning, I

almost fell asleep driving to work. Does this mean I need more than 2

LPM at night? I have also had more of a cough that is not dry but

mucousy- I know my lung biopsy diagnosis indicated I had inflammation;

sort of a combination of UIP, NSIP and hypersensitivity pneumonitis(?)-

so does this mean since I am developing cough am I getting worse???

Cannot wait for Columbia evaluation on October 1-maybe I can get some

answers. I am only on prednisone 10 mgs and DO NOT want to increase this

again. Would NAC help? - nne, ILD 6/09

>

[Guest guest]

nne,

Believe me, I never thought I would love it since I AM claustrophobic in

a big way. I almost passed out once in a line at 6 flags because it was

so crowded... and that was in the open! But the CPAP never bothered me

that way, I think because I could feel the air blowing. I can't feel

that now but I'm used to it. Good luck

Dyane Phoenix ipf o2

> > >

> > > Hi everyone,

> > > It's nne- I haven't posted in awhile. My portable O2 problem

was

> > FINALLY solved last week. After repeated calls to my local Apria

office

> > (fyi- took your advice Bruce and did not talk to cust service asked

for

> > manager) I now have my Helios Marathon. They wanted the little

Helios

> > 300 back and I asked if I could keep it since it is so light I use

that

> > one for the gym- I even asked manager how much more it would cost me

to

> > rent it along with Marathon. He said he would let me keep it AT NO

EXTRA

> > CHARGE! I was giddy with happiness, so now Pink Joyce I too have a

baby

> > and toddler!

> > > And now for my symptoms changing- I have developed problems

sleeping

> > similar to what was happening before I got O2 at night- I wake up a

lot

> > and feel like I haven't slept at all in the morning. This morning, I

> > almost fell asleep driving to work. Does this mean I need more than

2

> > LPM at night? I have also had more of a cough that is not dry but

> > mucousy- I know my lung biopsy diagnosis indicated I had

inflammation;

> > sort of a combination of UIP, NSIP and hypersensitivity

pneumonitis(?)-

> > so does this mean since I am developing cough am I getting worse???

> > Cannot wait for Columbia evaluation on October 1-maybe I can get

some

> > answers. I am only on prednisone 10 mgs and DO NOT want to increase

this

> > again. Would NAC help? - nne, ILD 6/09

> > >

> >

>

[Guest guest]

SharonHere are the symptoms described by Mayo:Shortness of breath (dyspnea), either while exercising or at restFatigue Dizziness or fainting spells (syncope)Chest pressure or painSwelling (edema) in your ankles, legs and eventually in your abdomen (ascites)Bluish color to your lips and skin (cyanosis)Racing pulse or heart palpitations But when I'm talking about painful, I'm referring to later stages of PH where there is often pain from the tightness and pressure versus PF where we have shortness of breath but not something you'd generally label as pain. My main point is just that you're protecting your other organs from the lack of oxygen through using supplemental oxygen. The most critical of these is your heart. It is the other organ most frequently damaged by lack of oxygen. Knowing that is the overriding factor I'm so diligent using my oxygen and oximeter. See, one can still function with sats in the 80's, even low 80's. In fact many of us probably did before diagnosis. Function well? No. Not like we can with oxygen. But would I be tempted to get off the sofa and go get a glass of water without oxygen if it wasn't for the potential damage or PH? Yes. If I did that slowly I'd stay in the 80's. But, I know that every minute I'd do foolish things like that would get me closer to serious damage and problems. Oxygen=ComfortOxygen=Preventative for Heart> > >> > > Hi everyone,> > > It's nne- I haven't posted in awhile. My portable O2 problem> was> > FINALLY solved last week. After repeated calls to my local Apria> office> > (fyi- took your advice Bruce and did not talk to cust service asked> for> > manager) I now have my Helios Marathon. They wanted the little Helios> > 300 back and I asked if I could keep it since it is so light I use> that> > one for the gym- I even asked manager how much more it would cost me> to> > rent it along with Marathon. He said he would let me keep it AT NO> EXTRA> > CHARGE! I was giddy with happiness, so now Pink Joyce I too have a> baby> > and toddler!> > > And now for my symptoms changing- I have developed problems sleeping> > similar to what was happening before I got O2 at night- I wake up a> lot> > and feel like I haven't slept at all in the morning. This morning, I> > almost fell asleep driving to work. Does this mean I need more than 2> > LPM at night? I have also had more of a cough that is not dry but> > mucousy- I know my lung biopsy diagnosis indicated I had inflammation;> > sort of a combination of UIP, NSIP and hypersensitivity pneumonitis(> ?)-> > so does this mean since I am developing cough am I getting worse???> > Cannot wait for Columbia evaluation on October 1-maybe I can get some> > answers. I am only on prednisone 10 mgs and DO NOT want to increase> this> > again. Would NAC help? - nne, ILD 6/09> > >> >>