Re: Oxygen update and changes in my symptoms

[Guest guest]

nne,

Ask for a sleep study for apnea. Falling asleep at the stop light was

the last straw before I asked for mine....I recorded 102 apnea episodes

in 60 minutes split between sleep, central and hypoxia?(super shallow

breathing). Love/hate my machine and Still tired but I don't fall asleep

driving anymore!

Dyane Phoenix ipf 02

>

> 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]

Sharon

The biggest single risk of not using your oxygen is Pulmonary

Hypertension and/or damage to the right side of your heart. We're all at

risk. Some from pre-diagnosis. But every time we have undersaturation we

increase the risk. Pulmonary Hypertension is more painful than PF and if

it develops unchecked will lead to a quicker and worse death. Caught

early Tracleer and Revatio often work. Caught late you go to Remodulin

or then Flolan which is not a pleasant way to live.

I was just tested for PH and finding I don't have it is such a relief. I

do have some right heart abnormalities but thats common with oxygen

issues. The wording is a dilated (enlarged) right ventricle. There's no

way to be sure, but had I not been on oxygen for two years it likely

would be in much worse condition. How many people die of " heart failure "

when the underlying cause of underoxygenation was never diagnosed?

So, simply, your heart is the reason for medically needing oxygen. Your

comfort is the clinical reason. As to what it will do for PF, it's not

there to reduce the fibrosis or slow it. But, it does have a very

indirect impact on your lungs. You get the maximum use out of them and

through deep and good breathing keep them functioning better. You

maximize your use of their capacity.

Now as to those you are talking about, I don't know their oxygen

requirements. Only way to know is through using an oximeter. Perhaps

they've stabilized if TB was behind it. Perhaps their saturation has

even improved. But I stick to the standard that I'm not going below 90%

and increasing the risk of PH. The only reminder of that I need is to

think about Joyce Dalton's final months.

As to continuing to smoke with oxygen, that just shows the horrible hold

the addiction has. I am as anti-smoking as anyone you'll ever meet so

can't discuss it very objectively. However, I will say one thing. It's

that person's right but not their right to put others at risk. Anyone

else living in the house is as substantial risk. The deaths we've read

about from house fires of people on oxygen have all come from

cigarettes. And, its not just been the oxygen user. There have been some

refusals to provide oxygen to smokers in Canada although its not the

general practice and there are even a few oxygen providers in the US who

will not do so. Generally they are required to. If a person chooses to

endanger themselves over this addiction, then I do feel so bad for them,

but thats their right. If they are endangering others, then I have no

tolerance. It's just not their right to do so.

> >

> > 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]

Hi Joyce,

I love the idea of dressing the O2 in baby clothes! that's so cute! Oh and I did

have something else to report on- thanks for reminding me Joyce- I got the

$65.00 oximeter. Now it is so easy to know if I am not getting enough O2. In

fact I have upped the O2 for exertion to 4 LPMS - when I noticed that at 3, my

sats were falling into the 80's. I agree about talking to my pulmodude about

overnight oximetry and possible sleep study. I can't be falling asleep at the

wheel on the Garden State Pkwy!- nne

>

>

>

> Subject: RE: Oxygen update and changes in my symptoms

> To: 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]

Dyane- I am definitely going to ask for sleep study. My husband has used a CPAP

for years and loves it, I hope I can get used to it if need be!- nne

> >

> > 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

> >

>