Re: high flow etc.

[Guest guest]

Mine doesn't compare to Joyce, , or Gwynne either, obviously.

However, I have seen mine drop fast under wrong circumstances. I

think I have a larger difference in my levels of oxygen need as I can

still sometimes sit quietly and maintain even with no oxygen and

othertimes it may take 2 liters. But moving around pushes me quickly

to 2, 3, 4. And if I get out and find myself moving too rapidly or

lifting or something then on 4 my sats would still drop.

As I've experienced what it feels like to go into the mid to upper

70's since on oxygen and using an oximeter (oh I got it back up fast,

let me assure you), I suspect that the three incidents that led me to

insist something was wrong, my drop was much lower. Based on the

descriptions I've heard from the others here I'm guessing 60's,

surely not worse that that. But those three times all I could do was

just lay down and breath and pant like a dog as I thought I would

never in my life get my breath back. I was gasping and completely

unable to move each time for at least 5 minutes. witnessed the

third time. I'm sure it scared her as much as it did me. But had I

not had those three times I would have never been insistent enough to

get the 6 minute walk that set everything in place. Still when I

think makes me angry that as many medical tests and appointments I'd

had I'd never once been given something as simple as a 6 minute walk

and I know most people haven't. It should be routine. I like most

attributed as did my doctors being out of breath to being out of

shape, needing exercises, and allergies and sinuses. I'd been short

for a long time. The feeling by myself and my pulmonologist is that

the diagnosis should have been made between one year and and year and

a half earlier. Now wouldn't have given cure but maybe with oxygen I

would have been more functional during that period plus protected

other organs.

For me its odd that sitting I'm pretty good with my PFT's as bad as

they are. My pulmonologist does define my status by them as quite

advanced. Yet, I don't feel it. I'm sure Gwynne will say I didn't

show signs of it with her.

So, I'll just act like I feel for now which is pretty good, knowing

that the time is ahead when it will hit like a bulldozer. While

seeing Gwynne, Joyce, and where they are is a little scary its

also so comforting to me to know what its going to be like and to be

able to learn from them how to deal with it. I never underestimate

the pain and suffering they go through. But, I still see all three

somehow finding continuing value and quality in their lives. The one

lunch with Gwynne was a great lunch in just spending time with an

incredible woman and friend. And, that was the only reason for it.

But after it gave me a sense of personal commitment as I thought what

she went through just to eat lunch out with me. I know how getting

ready to go out is and let me assure you she took no shortcuts. With

her oxyview glasses and everything else she looked absolutely

beautiful. I mean the pride was still there, the desire to just look

good, and the smiles. The interaction with everyone in the restaurant

just amazed me as I thought back. I also realized I talked so much it

took her two Companion 1000's. So, while the meal was immensely one

of the true pleasures I've had, after as i reflected, I gained so

much from it beyond a wonderful lunch with a wonderful lady who

shares my disease.

>

> Gwynne, My saturation doesn't drop nearly like Joyce, and

you.

> I don't think I could make it. The lowest I have dropped I think

is

> 83. I felt like an elephant was sitting on me. I guess I am a

wimp,

> even though I know I have a high pain tolerance I have a low 02

> tolerance. Some days I just feel like a rag. Then I think of all

> y'all have been through and I am just amazed. I do have such HEROs

to

> look up to and learn how to cope with this monster. I Thank

everyone

> of you for your support and prayers.

>

>

>

> Love & Prayers, Peggy

> ipf 6/04

>

> Worry looks around.

> Sorry looks back,

> Faith looks up.

>

[Guest guest]

Gwynnie... I think I'm 'frozen' until I get to OHSU. Dare I hope. Is he crazy as a pet coon or uncaring to this degree.

I don't know where I am right now...believe the radiologists, or him. If his comments were typical I could consider them.

We'll see...

Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there!

high flow etc.

Peggy,I'm not familiar with concentrators, so I can't speakabout them. I've always been on liquid. But whenevermy 02 needs have increased, it has happened ratherquickly. Maybe I will notice my sats dropping moreover the period of 3 weeks or so, and in retrospectwill realize that I've made a jump in the need for more02. I've never stayed at any one liter flow for morethan 6 months since the first year.At my flow, movement of any kind - for short distance,long distance, upper body, lower body, coughing,putting on a blouse or a pair of pants, bending, lifting,carrying anything, talking, standing up suddenly - allmake my sats drop, no matter what I've got my 02 seton. I definitely can't empty the trash, and I've got a stairlift chair for the 7 stairs from my garage to my kitchen.How low do your sats typically go when they drop? At90, you might just need to slow down (some more).I'm sorry you are so frustrated, and I can certainlyempathize with you. Seems like frustration is such ahuge part of our lives with this beast.It would be awesome If you did come through thisneck of the woods when you go to San . It'sso great that Beth and Leanne are coming tovisit you - lucky duck!!!!!!!Tina,I'm so glad the new doctor seems like a keeper! Hangon to him. It's a crime that we have to work so hard tofind qualified and caring physicians. It's horrifying tothink about the hair-raising experiences that you andBabs and so many of us have had and continue to havein hospitals or doctors' offices. The system is definitelybadly flawed.I'm sorry you have reached the "severe" point, but youhave a wonderful attitude. Going to San alonesounds like a perfect gift to give yourself at a time whenyou really need it. There's nothing selfish about it. I'm soglad you get to go.Mama Sher,Burnt out ILD? That sounds like something he made upafter taking a correspondence class. For sure your newdoc can do better than that, I'm betting.Geeta,Congratulations and best of wishes to your son and hisnew bride-to-be. I'm sure you're very proud, and busy!I hope you can post some photos of the wedding - we'dlove to see.Hugs and blessings,Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas

[Guest guest]

Bruce,

A woman's vanity thing!!!! I can think of hurtful things to do to that idiot! Maybe a trip to the gas station ..... a fill up of air through the nose from the tire pump.

Did you tell me that just to get the Grumpies to come out. They were snoozing.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > >> > > Gwynne, My saturation doesn't drop nearly like Joyce, and > you.> > > I don't think I could make it. The lowest I have dropped I think > is> > > 83. I felt like an elephant was sitting on me. I guess I am a > wimp,> > > even though I know I have a high pain tolerance I have a low 02> > > tolerance. Some days I just feel like a rag. Then I think of all> > > y'all have been through and I am just amazed. I do have such > HEROs to> > > look up to and learn how to cope with this monster. I Thank > everyone> > > of you for your support and prayers.> > >> > >> > >> > > Love & Prayers, Peggy> > > ipf 6/04> > >> > > Worry looks around.> > > Sorry looks back,> > > Faith looks up.> > >> >>