Re: Pulmo visit tomorrow

[Guest guest]

Jeane, like your idea about Obama.. hang in there, my pft's vary

also as bruce was saying. they dropped low enough once that at

temple i had to go back in 2 wks and he had no idea.. no rhyme or

reason,, told him it's just me.. I have found that weather, fatigue,

illness all affect the numbers. So, will keep you in prayer. Patti,

ipf 7'06,nj

> >

> > I just got home a little while from the doctor's. Took a detour

and

> > stopped at this wonderful place to have some ribs. I considered

it my

> > reward for going thru the pulmonary function torture and the 6

minute

> > or till you crook walk.

> >

> > My functions took a significant drop (10 %) across the board

pretty

> > much. But this is the first real serious drop at one time like

that.

> > My DLCO is now 42% but I refuse to let things get me down. It

could be

> > worse - that could have been my highest # instead of one of the

lower

> > ones. I will still keep on going on and fighting this. Heck sure

> > beats the alternative. Why waste what time I have left on a pity

> > party. I knew that there would be tests like this at times. I'm

not

> > happy with it but there is little I can do about it except use

it to

> > make me more determined to fight and find voices to yell about

it for

> > all of us.

> >

> > Maybe I will figure out a way to contact Obama's office again

like I

> > did before election day. I need to give him something more to

think

> > about besides which fortune 500 company needs a bailout next. We

need

> > a bailout here and now.

> >

>

[Guest guest]

Hershey has all their techs take PFT's periodically and they all hate

them. Especially the ones that really make the patients crazy. It

does give the techs a lot more understanding and compassion for the

patients they are administering the torture to.

> >

> > From: jeane7160

> > Subject: Pulmo visit tomorrow

> > To: Breathe-Support@ yahoogroups. com

> > Date: Tuesday, December 2, 2008, 7:16 AM

> >

> >

> >

> >

> > Tomorrow is one of those days I dread. First comes the PFT's and

> > each time I go it seems they do more and more extensive testing

> > there. Everytime a different person administers it for the first

> > time they have to use their 7 try rule. You have to try 7 times

to

> > duplicate each test and only after 7 tries will they move on to

> the

> > next. Each time they tell me the same thing, consecutive test is

> > worse than the one before. I tell them that is how it has been

> this

> > entire time but they still go by the 7 try rule. After they have

> > done the entire PFT's to me one time they know that is how I am

> and

> > don't use the 7 try rule. This is good since they are now up to

> > something like 8 different things they test for.

> >

> > And when they have me sufficiently worn down from that they say

ok

> > lets go do the 6 min walk. Yeah, just can't wait for that one. I

> am

> > waiting for the time I land on the floor with such anticipation.

I

> > really want to see if they pick you up and reset their clock.

> > Pulmonary lab torture chanber all the same to me.

> >

> > Then I get to see my doctor. He took a walk with me once and told

> me

> > if he went thru what I do to walk he would not be walking much. I

> > asked him if that meant he was hanging a toe tag on me because

> that

> > was the only thing that might stop me from trying to go on

living.

> > Maybe - but I am still working on puter service to graves and

> until

> > that is worked out he might as well not consider me gone.

> >

> > I went to the mall for the first time in 6 years and window

> shopped

> > the entire mall. It was wonderful especially at this time of the

> > year with the little ones all dressed up waiting for their turn

to

> > see santa. My scooter really has given me a new lease on life. By

> > the way, my doctor's remark about not trying to shop if he were

in

> my

> > shoes was the push to get me to get the scooter. Jean

> >

>

[Guest guest]

Hershey has all their techs take PFT's periodically and they all hate

them. Especially the ones that really make the patients crazy. It

does give the techs a lot more understanding and compassion for the

patients they are administering the torture to.

> >

> > From: jeane7160

> > Subject: Pulmo visit tomorrow

> > To: Breathe-Support@ yahoogroups. com

> > Date: Tuesday, December 2, 2008, 7:16 AM

> >

> >

> >

> >

> > Tomorrow is one of those days I dread. First comes the PFT's and

> > each time I go it seems they do more and more extensive testing

> > there. Everytime a different person administers it for the first

> > time they have to use their 7 try rule. You have to try 7 times

to

> > duplicate each test and only after 7 tries will they move on to

> the

> > next. Each time they tell me the same thing, consecutive test is

> > worse than the one before. I tell them that is how it has been

> this

> > entire time but they still go by the 7 try rule. After they have

> > done the entire PFT's to me one time they know that is how I am

> and

> > don't use the 7 try rule. This is good since they are now up to

> > something like 8 different things they test for.

> >

> > And when they have me sufficiently worn down from that they say

ok

> > lets go do the 6 min walk. Yeah, just can't wait for that one. I

> am

> > waiting for the time I land on the floor with such anticipation.

I

> > really want to see if they pick you up and reset their clock.

> > Pulmonary lab torture chanber all the same to me.

> >

> > Then I get to see my doctor. He took a walk with me once and told

> me

> > if he went thru what I do to walk he would not be walking much. I

> > asked him if that meant he was hanging a toe tag on me because

> that

> > was the only thing that might stop me from trying to go on

living.

> > Maybe - but I am still working on puter service to graves and

> until

> > that is worked out he might as well not consider me gone.

> >

> > I went to the mall for the first time in 6 years and window

> shopped

> > the entire mall. It was wonderful especially at this time of the

> > year with the little ones all dressed up waiting for their turn

to

> > see santa. My scooter really has given me a new lease on life. By

> > the way, my doctor's remark about not trying to shop if he were

in

> my

> > shoes was the push to get me to get the scooter. Jean

> >

>

[Guest guest]

Hershey has all their techs take PFT's periodically and they all hate

them. Especially the ones that really make the patients crazy. It

does give the techs a lot more understanding and compassion for the

patients they are administering the torture to.

> >

> > From: jeane7160

> > Subject: Pulmo visit tomorrow

> > To: Breathe-Support@ yahoogroups. com

> > Date: Tuesday, December 2, 2008, 7:16 AM

> >

> >

> >

> >

> > Tomorrow is one of those days I dread. First comes the PFT's and

> > each time I go it seems they do more and more extensive testing

> > there. Everytime a different person administers it for the first

> > time they have to use their 7 try rule. You have to try 7 times

to

> > duplicate each test and only after 7 tries will they move on to

> the

> > next. Each time they tell me the same thing, consecutive test is

> > worse than the one before. I tell them that is how it has been

> this

> > entire time but they still go by the 7 try rule. After they have

> > done the entire PFT's to me one time they know that is how I am

> and

> > don't use the 7 try rule. This is good since they are now up to

> > something like 8 different things they test for.

> >

> > And when they have me sufficiently worn down from that they say

ok

> > lets go do the 6 min walk. Yeah, just can't wait for that one. I

> am

> > waiting for the time I land on the floor with such anticipation.

I

> > really want to see if they pick you up and reset their clock.

> > Pulmonary lab torture chanber all the same to me.

> >

> > Then I get to see my doctor. He took a walk with me once and told

> me

> > if he went thru what I do to walk he would not be walking much. I

> > asked him if that meant he was hanging a toe tag on me because

> that

> > was the only thing that might stop me from trying to go on

living.

> > Maybe - but I am still working on puter service to graves and

> until

> > that is worked out he might as well not consider me gone.

> >

> > I went to the mall for the first time in 6 years and window

> shopped

> > the entire mall. It was wonderful especially at this time of the

> > year with the little ones all dressed up waiting for their turn

to

> > see santa. My scooter really has given me a new lease on life. By

> > the way, my doctor's remark about not trying to shop if he were

in

> my

> > shoes was the push to get me to get the scooter. Jean

> >

>

[Guest guest]

My sats are always up so far - but only because I go into such real

fast shallow breathing as soon as I begin walking. Within 50 feet I

am doing this type breathing without trying. But during that first

50 there is a significant drop. This breathing that would cause

healthy people to have serious consequences of hyperventilation keeps

me in the mid 90's. The sensor in my brain stem that regulates

breathing is messed up and sets me into panic mode as soon as I begin

doing anything. Actually, since my carbon immediately builds up I

think of it more as a defense alarm going off than it being messed

up. It is that or brain damage does have its own rewards. LOL

Jean

> >

> > I just got home a little while from the doctor's. Took a detour

and

> > stopped at this wonderful place to have some ribs. I considered

it my

> > reward for going thru the pulmonary function torture and the 6

minute

> > or till you crook walk.

> >

> > My functions took a significant drop (10 %) across the board

pretty

> > much. But this is the first real serious drop at one time like

that.

> > My DLCO is now 42% but I refuse to let things get me down. It

could be

> > worse - that could have been my highest # instead of one of the

lower

> > ones. I will still keep on going on and fighting this. Heck sure

> > beats the alternative. Why waste what time I have left on a pity

> > party. I knew that there would be tests like this at times. I'm

not

> > happy with it but there is little I can do about it except use it

to

> > make me more determined to fight and find voices to yell about it

for

> > all of us.

> >

> > Maybe I will figure out a way to contact Obama's office again

like I

> > did before election day. I need to give him something more to

think

> > about besides which fortune 500 company needs a bailout next. We

need

> > a bailout here and now.

> >

>

[Guest guest]

My sats are always up so far - but only because I go into such real

fast shallow breathing as soon as I begin walking. Within 50 feet I

am doing this type breathing without trying. But during that first

50 there is a significant drop. This breathing that would cause

healthy people to have serious consequences of hyperventilation keeps

me in the mid 90's. The sensor in my brain stem that regulates

breathing is messed up and sets me into panic mode as soon as I begin

doing anything. Actually, since my carbon immediately builds up I

think of it more as a defense alarm going off than it being messed

up. It is that or brain damage does have its own rewards. LOL

Jean

> >

> > I just got home a little while from the doctor's. Took a detour

and

> > stopped at this wonderful place to have some ribs. I considered

it my

> > reward for going thru the pulmonary function torture and the 6

minute

> > or till you crook walk.

> >

> > My functions took a significant drop (10 %) across the board

pretty

> > much. But this is the first real serious drop at one time like

that.

> > My DLCO is now 42% but I refuse to let things get me down. It

could be

> > worse - that could have been my highest # instead of one of the

lower

> > ones. I will still keep on going on and fighting this. Heck sure

> > beats the alternative. Why waste what time I have left on a pity

> > party. I knew that there would be tests like this at times. I'm

not

> > happy with it but there is little I can do about it except use it

to

> > make me more determined to fight and find voices to yell about it

for

> > all of us.

> >

> > Maybe I will figure out a way to contact Obama's office again

like I

> > did before election day. I need to give him something more to

think

> > about besides which fortune 500 company needs a bailout next. We

need

> > a bailout here and now.

> >

>

[Guest guest]

Jean,

What you describe sounds to me like an excellent example of how our bodies seek to compensate and keep us safe in whatever way they can. It seems as though your brain is doing whatever it has to to keep your sats up. If that means rapid shallow breathing then that's what it tells you do do.

Can you consciously slow it down? Do the "pursed lip" breathing we all learn in rehab? You know the "smell the roses, blow out the candles" breathing? That's actually good for helping to throw off excess CO2 also. Just wondering if you have conscious control over it.

It is really a defense alarm as you say. That's what the cough is for me. I start to cough when my sats are in the low 90's. I think it's warning that I'm approaching the "danger zone".

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

To: Breathe-Support Sent: Thursday, December 4, 2008 5:29:28 AMSubject: Re: Pulmo visit tomorrow

My sats are always up so far - but only because I go into such real fast shallow breathing as soon as I begin walking. Within 50 feet I am doing this type breathing without trying. But during that first 50 there is a significant drop. This breathing that would cause healthy people to have serious consequences of hyperventilation keeps me in the mid 90's. The sensor in my brain stem that regulates breathing is messed up and sets me into panic mode as soon as I begin doing anything. Actually, since my carbon immediately builds up I think of it more as a defense alarm going off than it being messed up. It is that or brain damage does have its own rewards. LOLJean> >> > I just got home a little while from the doctor's. Took a detour and> > stopped at this wonderful place to have some ribs. I considered it my> > reward for going thru the pulmonary function torture and the 6 minute> > or till you crook walk.> >> > My functions took a significant drop (10 %) across the board pretty> > much. But this is the first real serious drop at one time like that.> > My DLCO is now 42% but I refuse to let things get me down. It could be> > worse - that could have been my highest # instead of one of the lower> > ones. I will still keep on going on and fighting this. Heck sure> > beats the alternative. Why waste what time I have left on a pity> > party. I knew that there would be tests like this at times. I'm not> > happy with it but there is little I

can do about it except use it to> > make me more determined to fight and find voices to yell about it for> > all of us.> >> > Maybe I will figure out a way to contact Obama's office again like I> > did before election day. I need to give him something more to think> > about besides which fortune 500 company needs a bailout next. We need> > a bailout here and now.> >>

[Guest guest]

For me this disease began in the bases of both lungs and is slowly

making its way north. As a result the fast shallow breathing that

comes with any activity is managing to utilize the area of my lungs

that still do good but the PFT's make you use as much lung as you can

muster up so that shows a totally different story so to speak.

No, I can not slow it down no matter how I try. First I have to

totally stop doing anything and just stand still. Once it begins to

settle a bit I can utilize pursed lip by breathing in to the count of

2 and out to the count of 5 to get it back to " normal " . Over the

years I have learned that this is what works for me and as the

doctors keep telling me - figure out the adaptations that help me

live better and utilize them. If you can't figure out a way around

something youself or find someone else who has and can give you

pointers, just do not do whatever that is.

This really summed up just how little doctors knowledge of things

that might help when it comes to living with this monster. Jean

> > >

> > > I just got home a little while from the doctor's. Took a detour

> and

> > > stopped at this wonderful place to have some ribs. I considered

> it my

> > > reward for going thru the pulmonary function torture and the 6

> minute

> > > or till you crook walk.

> > >

> > > My functions took a significant drop (10 %) across the board

> pretty

> > > much. But this is the first real serious drop at one time like

> that.

> > > My DLCO is now 42% but I refuse to let things get me down. It

> could be

> > > worse - that could have been my highest # instead of one of the

> lower

> > > ones. I will still keep on going on and fighting this. Heck sure

> > > beats the alternative. Why waste what time I have left on a pity

> > > party. I knew that there would be tests like this at times. I'm

> not

> > > happy with it but there is little I can do about it except use

it

> to

> > > make me more determined to fight and find voices to yell about

it

> for

> > > all of us.

> > >

> > > Maybe I will figure out a way to contact Obama's office again

> like I

> > > did before election day. I need to give him something more to

> think

> > > about besides which fortune 500 company needs a bailout next.

We

> need

> > > a bailout here and now.

> > >

> >

>

[Guest guest]

the techs at penn do pfts alsoPink Joyce IPF 3/06 Pennsylvania

Subject: Re: Pulmo visit tomorrowTo: Breathe-Support Date: Thursday, December 4, 2008, 3:48 AM

Joycei use the oxygen in between. i do know for the one they close the door for with the carbon dioxide i believe, they leave it outside the door but always have oxygen ready for me and tissues.. Me i just want oxygen and bed... lol they started at temple having a tech go through all the testing so they can experience it and know how it feels. after she had the pfts i asked her and she agreed it was tough and that's with somewhat good lungs.... patti, ipf 7'06,nj> > From: jeane7160 <jeane7160 (AT) yahoo (DOT) com>> Subject: Pulmo visit tomorrow> To: Breathe-Support@ yahoogroups. com> Date: Tuesday, December 2, 2008, 7:16 AM> > > > > Tomorrow is one of those days I dread. First comes the PFT's and > each time I go it seems they do more and more extensive testing > there. Everytime a different person administers it for the first > time they have to

use their 7 try rule. You have to try 7 times to > duplicate each test and only after 7 tries will they move on to the > next. Each time they tell me the same thing, consecutive test is > worse than the one before. I tell them that is how it has been this > entire time but they still go by the 7 try rule. After they have > done the entire PFT's to me one time they know that is how I am and > don't use the 7 try rule. This is good since they are now up to > something like 8 different things they test for.> > And when they have me sufficiently worn down from that they say ok > lets go do the 6 min walk. Yeah, just can't wait for that one. I am > waiting for the time I land on the floor with such anticipation. I > really want to see if they pick you up and reset their clock. > Pulmonary lab torture chanber all the same to me.> > Then I

get to see my doctor. He took a walk with me once and told me > if he went thru what I do to walk he would not be walking much. I > asked him if that meant he was hanging a toe tag on me because that > was the only thing that might stop me from trying to go on living. > Maybe - but I am still working on puter service to graves and until > that is worked out he might as well not consider me gone.> > I went to the mall for the first time in 6 years and window shopped > the entire mall. It was wonderful especially at this time of the > year with the little ones all dressed up waiting for their turn to > see santa. My scooter really has given me a new lease on life. By > the way, my doctor's remark about not trying to shop if he were in my > shoes was the push to get me to get the scooter.

Jean>

[Guest guest]

Jean,

That's exactly what I expected you to say. Our bodies are amazingly self protective and as you say, the rapid shallow breathing is the best adaptation your body can make to the limitations of your lungs.

I know that the minute I start coughing the only thing I can do is full stop. Literally stop moving and let my body catch up. It can take several minutes.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

To: Breathe-Support Sent: Thursday, December 4, 2008 9:46:57 AMSubject: Re: Pulmo visit tomorrow

For me this disease began in the bases of both lungs and is slowly making its way north. As a result the fast shallow breathing that comes with any activity is managing to utilize the area of my lungs that still do good but the PFT's make you use as much lung as you can muster up so that shows a totally different story so to speak.No, I can not slow it down no matter how I try. First I have to totally stop doing anything and just stand still. Once it begins to settle a bit I can utilize pursed lip by breathing in to the count of 2 and out to the count of 5 to get it back to "normal". Over the years I have learned that this is what works for me and as the doctors keep telling me - figure out the adaptations that help me live better and utilize them. If you can't figure out a way around something youself or find someone else who has and can give you pointers, just do not do whatever that

is.This really summed up just how little doctors knowledge of things that might help when it comes to living with this monster. Jean> > >> > > I just got home a little while from the doctor's. Took a detour > and> > > stopped at this wonderful place to have some ribs. I considered > it my> > > reward for going thru the pulmonary function torture and the 6 > minute> > > or till you crook walk.> > >> > > My functions took a significant drop (10 %) across the board > pretty> > > much. But this is the first real serious drop at one time like > that.> > > My DLCO is now 42% but I refuse to let things get me down. It > could be> > > worse - that could have been my highest # instead of one of the > lower> > > ones. I will still keep on going on and fighting this. Heck sure> > > beats the alternative. Why waste what time I have left on a pity>

> > party. I knew that there would be tests like this at times. I'm > not> > > happy with it but there is little I can do about it except use it > to> > > make me more determined to fight and find voices to yell about it > for> > > all of us.> > >> > > Maybe I will figure out a way to contact Obama's office again > like I> > > did before election day. I need to give him something more to > think> > > about besides which fortune 500 company needs a bailout next. We > need> > > a bailout here and now.> > >> >>

[Guest guest]

Jeane

Oh, I'm absolutely convinced brain damage has its rewards and now all we

have to say is " oxygen deprivation. " lol

Well, I wouldn't get too excited then over one set of PFT's if you're

seeing no difference day to day. I stick with my " I am as I feel not as

labs show " philosophy. I'd be saying the same thing to anyone who had a

higher than previous PFT too. Yes, when one is better than the last, I'd

love to say " oh I'm getting better " but I know the reality so I'm just

glad to say " stable. " You sound at least as you describe to be fairly

much stable. Now if someone gets in your way as you zoom around on your

scooter, they may not be.

> > >

> > > I just got home a little while from the doctor's. Took a detour

> and

> > > stopped at this wonderful place to have some ribs. I considered

> it my

> > > reward for going thru the pulmonary function torture and the 6

> minute

> > > or till you crook walk.

> > >

> > > My functions took a significant drop (10 %) across the board

> pretty

> > > much. But this is the first real serious drop at one time like

> that.

> > > My DLCO is now 42% but I refuse to let things get me down. It

> could be

> > > worse - that could have been my highest # instead of one of the

> lower

> > > ones. I will still keep on going on and fighting this. Heck sure

> > > beats the alternative. Why waste what time I have left on a pity

> > > party. I knew that there would be tests like this at times. I'm

> not

> > > happy with it but there is little I can do about it except use it

> to

> > > make me more determined to fight and find voices to yell about it

> for

> > > all of us.

> > >

> > > Maybe I will figure out a way to contact Obama's office again

> like I

> > > did before election day. I need to give him something more to

> think

> > > about besides which fortune 500 company needs a bailout next. We

> need

> > > a bailout here and now.

> > >

> >

>

[Guest guest]

bruce

i brought all of the literature that i accumalted about he oxy view glasses to the eye doctor/optometrist and they have the information

i haven't been back since i got my new frames last spring, so i don't know if they did anything with it

but you could get the info on line and bring it to whoever makes your glasses

one more thing to inform the public aboutPink Joyce IPF 3/06 Pennsylvania

Subject: Re: Pulmo visit tomorrowTo: Breathe-Support Date: Wednesday, December 3, 2008, 9:01 PM

JeaneAre you saturation levels and oxygen requirements reflecting the same asyour PFT's? I ask because PFT's are so far from a perfect science. Ifthe sats and oxygen needs seem to indicate the same its one thing.However, if not, I'd reserve giving too much credence until at least twosets of PFT's indicate the same.On February 8, according to my PFT's, my FVC dropped to 30% from 37%after the VATS and 44% before. It was obviously a bad testing day for mebecause on April 9, I was at 36% again and on August 4 at 39%.So, just consider your PFT in context of everything else you'reexperiencing.>> I just got home a little while from the doctor's. Took a detour and> stopped at this wonderful place to have some

ribs. I considered it my> reward for going thru the pulmonary function torture and the 6 minute> or till you crook walk.>> My functions took a significant drop (10 %) across the board pretty> much. But this is the first real serious drop at one time like that.> My DLCO is now 42% but I refuse to let things get me down. It could be> worse - that could have been my highest # instead of one of the lower> ones. I will still keep on going on and fighting this. Heck sure> beats the alternative. Why waste what time I have left on a pity> party. I knew that there would be tests like this at times. I'm not> happy with it but there is little I can do about it except use it to> make me more determined to fight and find voices to yell about it for> all of us.>> Maybe I will figure out a way to contact Obama's office again like I> did before election day.

I need to give him something more to think> about besides which fortune 500 company needs a bailout next. We need> a bailout here and now.>

[Guest guest]

MB

Read an interesting answer recently from a RT on pursed lip breathing

which might help any who have difficulty doing it because of congestion

or other factors. If for whatever reason you find it difficult to do the

first part of breathing in through your nose, then still at least try to

breath in and breath out though your mouth, using the second part of

" blowing out the candles " . A large part of the benefit will still be

gained through the exhaling.

> > >

> > > I just got home a little while from the doctor's. Took a detour

> and

> > > stopped at this wonderful place to have some ribs. I considered

> it my

> > > reward for going thru the pulmonary function torture and the 6

> minute

> > > or till you crook walk.

> > >

> > > My functions took a significant drop (10 %) across the board

> pretty

> > > much. But this is the first real serious drop at one time like

> that.

> > > My DLCO is now 42% but I refuse to let things get me down. It

> could be

> > > worse - that could have been my highest # instead of one of the

> lower

> > > ones. I will still keep on going on and fighting this. Heck sure

> > > beats the alternative. Why waste what time I have left on a pity

> > > party. I knew that there would be tests like this at times. I'm

> not

> > > happy with it but there is little I can do about it except use it

> to

> > > make me more determined to fight and find voices to yell about it

> for

> > > all of us.

> > >

> > > Maybe I will figure out a way to contact Obama's office again

> like I

> > > did before election day. I need to give him something more to

> think

> > > about besides which fortune 500 company needs a bailout next. We

> need

> > > a bailout here and now.

> > >

> >

>

[Guest guest]

MB

Read an interesting answer recently from a RT on pursed lip breathing

which might help any who have difficulty doing it because of congestion

or other factors. If for whatever reason you find it difficult to do the

first part of breathing in through your nose, then still at least try to

breath in and breath out though your mouth, using the second part of

" blowing out the candles " . A large part of the benefit will still be

gained through the exhaling.

> > >

> > > I just got home a little while from the doctor's. Took a detour

> and

> > > stopped at this wonderful place to have some ribs. I considered

> it my

> > > reward for going thru the pulmonary function torture and the 6

> minute

> > > or till you crook walk.

> > >

> > > My functions took a significant drop (10 %) across the board

> pretty

> > > much. But this is the first real serious drop at one time like

> that.

> > > My DLCO is now 42% but I refuse to let things get me down. It

> could be

> > > worse - that could have been my highest # instead of one of the

> lower

> > > ones. I will still keep on going on and fighting this. Heck sure

> > > beats the alternative. Why waste what time I have left on a pity

> > > party. I knew that there would be tests like this at times. I'm

> not

> > > happy with it but there is little I can do about it except use it

> to

> > > make me more determined to fight and find voices to yell about it

> for

> > > all of us.

> > >

> > > Maybe I will figure out a way to contact Obama's office again

> like I

> > > did before election day. I need to give him something more to

> think

> > > about besides which fortune 500 company needs a bailout next. We

> need

> > > a bailout here and now.

> > >

> >

>

[Guest guest]

MB

Read an interesting answer recently from a RT on pursed lip breathing

which might help any who have difficulty doing it because of congestion

or other factors. If for whatever reason you find it difficult to do the

first part of breathing in through your nose, then still at least try to

breath in and breath out though your mouth, using the second part of

" blowing out the candles " . A large part of the benefit will still be

gained through the exhaling.

> > >

> > > I just got home a little while from the doctor's. Took a detour

> and

> > > stopped at this wonderful place to have some ribs. I considered

> it my

> > > reward for going thru the pulmonary function torture and the 6

> minute

> > > or till you crook walk.

> > >

> > > My functions took a significant drop (10 %) across the board

> pretty

> > > much. But this is the first real serious drop at one time like

> that.

> > > My DLCO is now 42% but I refuse to let things get me down. It

> could be

> > > worse - that could have been my highest # instead of one of the

> lower

> > > ones. I will still keep on going on and fighting this. Heck sure

> > > beats the alternative. Why waste what time I have left on a pity

> > > party. I knew that there would be tests like this at times. I'm

> not

> > > happy with it but there is little I can do about it except use it

> to

> > > make me more determined to fight and find voices to yell about it

> for

> > > all of us.

> > >

> > > Maybe I will figure out a way to contact Obama's office again

> like I

> > > did before election day. I need to give him something more to

> think

> > > about besides which fortune 500 company needs a bailout next. We

> need

> > > a bailout here and now.

> > >

> >

>

[Guest guest]

Joyce

Thats what I'd planned on doing. However, there are some optometrists

who do actually stock the frames, although not many, and that would sure

make it easier. My issue is two fold. First a very extreme prescription

and second I also have a very narrow nose bridge.

> >

> > I just got home a little while from the doctor's. Took a detour and

> > stopped at this wonderful place to have some ribs. I considered it

my

> > reward for going thru the pulmonary function torture and the 6

minute

> > or till you crook walk.

> >

> > My functions took a significant drop (10 %) across the board pretty

> > much. But this is the first real serious drop at one time like that.

> > My DLCO is now 42% but I refuse to let things get me down. It could

be

> > worse - that could have been my highest # instead of one of the

lower

> > ones. I will still keep on going on and fighting this. Heck sure

> > beats the alternative. Why waste what time I have left on a pity

> > party. I knew that there would be tests like this at times. I'm not

> > happy with it but there is little I can do about it except use it to

> > make me more determined to fight and find voices to yell about it

for

> > all of us.

> >

> > Maybe I will figure out a way to contact Obama's office again like I

> > did before election day. I need to give him something more to think

> > about besides which fortune 500 company needs a bailout next. We

need

> > a bailout here and now.

> >

>

[Guest guest]

Joyce

Thats what I'd planned on doing. However, there are some optometrists

who do actually stock the frames, although not many, and that would sure

make it easier. My issue is two fold. First a very extreme prescription

and second I also have a very narrow nose bridge.

> >

> > I just got home a little while from the doctor's. Took a detour and

> > stopped at this wonderful place to have some ribs. I considered it

my

> > reward for going thru the pulmonary function torture and the 6

minute

> > or till you crook walk.

> >

> > My functions took a significant drop (10 %) across the board pretty

> > much. But this is the first real serious drop at one time like that.

> > My DLCO is now 42% but I refuse to let things get me down. It could

be

> > worse - that could have been my highest # instead of one of the

lower

> > ones. I will still keep on going on and fighting this. Heck sure

> > beats the alternative. Why waste what time I have left on a pity

> > party. I knew that there would be tests like this at times. I'm not

> > happy with it but there is little I can do about it except use it to

> > make me more determined to fight and find voices to yell about it

for

> > all of us.

> >

> > Maybe I will figure out a way to contact Obama's office again like I

> > did before election day. I need to give him something more to think

> > about besides which fortune 500 company needs a bailout next. We

need

> > a bailout here and now.

> >

>

[Guest guest]

I am going downhill but only really care about year to year averages

since I feel that is the best guage. I don't worry about the numbers

much since the real issue is what can and can't I do anymore anyway.

The first time you see that huge drop - especially since it was July

when the last PFT was done, it kind of hits you. I still have to

have someone with me to get my scooter in and out of the trunk of the

car. But it is fun to speed up and make him run a bit. I get around

the malls and stores and he gets some much needed cardio exercize.

LOL

I really recomend people getting a scooter when they have mobility

problems. We can always have bumper stickers made up explaining the

disease that makes them necessary. Maybe it will pay to advertize

who knows.

> > > >

> > > > I just got home a little while from the doctor's. Took a

detour

> > and

> > > > stopped at this wonderful place to have some ribs. I

considered

> > it my

> > > > reward for going thru the pulmonary function torture and the 6

> > minute

> > > > or till you crook walk.

> > > >

> > > > My functions took a significant drop (10 %) across the board

> > pretty

> > > > much. But this is the first real serious drop at one time like

> > that.

> > > > My DLCO is now 42% but I refuse to let things get me down. It

> > could be

> > > > worse - that could have been my highest # instead of one of

the

> > lower

> > > > ones. I will still keep on going on and fighting this. Heck

sure

> > > > beats the alternative. Why waste what time I have left on a

pity

> > > > party. I knew that there would be tests like this at times.

I'm

> > not

> > > > happy with it but there is little I can do about it except

use it

> > to

> > > > make me more determined to fight and find voices to yell

about it

> > for

> > > > all of us.

> > > >

> > > > Maybe I will figure out a way to contact Obama's office again

> > like I

> > > > did before election day. I need to give him something more to

> > think

> > > > about besides which fortune 500 company needs a bailout next.

We

> > need

> > > > a bailout here and now.

> > > >

> > >

> >

>

[Guest guest]

I am going downhill but only really care about year to year averages

since I feel that is the best guage. I don't worry about the numbers

much since the real issue is what can and can't I do anymore anyway.

The first time you see that huge drop - especially since it was July

when the last PFT was done, it kind of hits you. I still have to

have someone with me to get my scooter in and out of the trunk of the

car. But it is fun to speed up and make him run a bit. I get around

the malls and stores and he gets some much needed cardio exercize.

LOL

I really recomend people getting a scooter when they have mobility

problems. We can always have bumper stickers made up explaining the

disease that makes them necessary. Maybe it will pay to advertize

who knows.

> > > >

> > > > I just got home a little while from the doctor's. Took a

detour

> > and

> > > > stopped at this wonderful place to have some ribs. I

considered

> > it my

> > > > reward for going thru the pulmonary function torture and the 6

> > minute

> > > > or till you crook walk.

> > > >

> > > > My functions took a significant drop (10 %) across the board

> > pretty

> > > > much. But this is the first real serious drop at one time like

> > that.

> > > > My DLCO is now 42% but I refuse to let things get me down. It

> > could be

> > > > worse - that could have been my highest # instead of one of

the

> > lower

> > > > ones. I will still keep on going on and fighting this. Heck

sure

> > > > beats the alternative. Why waste what time I have left on a

pity

> > > > party. I knew that there would be tests like this at times.

I'm

> > not

> > > > happy with it but there is little I can do about it except

use it

> > to

> > > > make me more determined to fight and find voices to yell

about it

> > for

> > > > all of us.

> > > >

> > > > Maybe I will figure out a way to contact Obama's office again

> > like I

> > > > did before election day. I need to give him something more to

> > think

> > > > about besides which fortune 500 company needs a bailout next.

We

> > need

> > > > a bailout here and now.

> > > >

> > >

> >

>

[Guest guest]

I am going downhill but only really care about year to year averages

since I feel that is the best guage. I don't worry about the numbers

much since the real issue is what can and can't I do anymore anyway.

The first time you see that huge drop - especially since it was July

when the last PFT was done, it kind of hits you. I still have to

have someone with me to get my scooter in and out of the trunk of the

car. But it is fun to speed up and make him run a bit. I get around

the malls and stores and he gets some much needed cardio exercize.

LOL

I really recomend people getting a scooter when they have mobility

problems. We can always have bumper stickers made up explaining the

disease that makes them necessary. Maybe it will pay to advertize

who knows.

> > > >

> > > > I just got home a little while from the doctor's. Took a

detour

> > and

> > > > stopped at this wonderful place to have some ribs. I

considered

> > it my

> > > > reward for going thru the pulmonary function torture and the 6

> > minute

> > > > or till you crook walk.

> > > >

> > > > My functions took a significant drop (10 %) across the board

> > pretty

> > > > much. But this is the first real serious drop at one time like

> > that.

> > > > My DLCO is now 42% but I refuse to let things get me down. It

> > could be

> > > > worse - that could have been my highest # instead of one of

the

> > lower

> > > > ones. I will still keep on going on and fighting this. Heck

sure

> > > > beats the alternative. Why waste what time I have left on a

pity

> > > > party. I knew that there would be tests like this at times.

I'm

> > not

> > > > happy with it but there is little I can do about it except

use it

> > to

> > > > make me more determined to fight and find voices to yell

about it

> > for

> > > > all of us.

> > > >

> > > > Maybe I will figure out a way to contact Obama's office again

> > like I

> > > > did before election day. I need to give him something more to

> > think

> > > > about besides which fortune 500 company needs a bailout next.

We

> > need

> > > > a bailout here and now.

> > > >

> > >

> >

>

[Guest guest]

Jean... again, I sure admire your attitude.

Surely, one of us, somewhere, will make a good connection with someone else who can be helpful to our cause and then we could all write letters to that someone...

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: Pulmo visit tomorrow

I just got home a little while from the doctor's. Took a detour and stopped at this wonderful place to have some ribs. I considered it my reward for going thru the pulmonary function torture and the 6 minute or till you crook walk.My functions took a significant drop (10 %) across the board pretty much. But this is the first real serious drop at one time like that. My DLCO is now 42% but I refuse to let things get me down. It could be worse - that could have been my highest # instead of one of the lower ones. I will still keep on going on and fighting this. Heck sure beats the alternative. Why waste what time I have left on a pity party. I knew that there would be tests like this at times. I'm not happy with it but there is little I can do about it except use it to make me more determined to fight and find voices to yell about it for all of us.Maybe I will figure out a way to contact Obama's office again like I did before election day. I need to give him something more to think about besides which fortune 500 company needs a bailout next. We need a bailout here and now.

[Guest guest]

Hey Jean... there's an idea... make a bumper sticker for your scooter to highlight PF!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: Pulmo visit tomorrow

I am going downhill but only really care about year to year averages since I feel that is the best guage. I don't worry about the numbers much since the real issue is what can and can't I do anymore anyway. The first time you see that huge drop - especially since it was July when the last PFT was done, it kind of hits you. I still have to have someone with me to get my scooter in and out of the trunk of the car. But it is fun to speed up and make him run a bit. I get around the malls and stores and he gets some much needed cardio exercize. LOL I really recomend people getting a scooter when they have mobility problems. We can always have bumper stickers made up explaining the disease that makes them necessary. Maybe it will pay to advertize who knows.> > > >> > > > I just got home a little while from the doctor's. Took a detour> > and> > > > stopped at this wonderful place to have some ribs. I considered> > it my> > > > reward for going thru the pulmonary function torture and the 6> > minute> > > > or till you crook walk.> > > >> > > > My functions took a significant drop (10 %) across the board> > pretty> > > > much. But this is the first real serious drop at one time like> > that.> > > > My DLCO is now 42% but I refuse to let things get me down. It> > could be> > > > worse - that could have been my highest # instead of one of the> > lower> > > > ones. I will still keep on going on and fighting this. Heck sure> > > > beats the alternative. Why waste what time I have left on a pity> > > > party. I knew that there would be tests like this at times. I'm> > not> > > > happy with it but there is little I can do about it except use it> > to> > > > make me more determined to fight and find voices to yell about it> > for> > > > all of us.> > > >> > > > Maybe I will figure out a way to contact Obama's office again> > like I> > > > did before election day. I need to give him something more to> > think> > > > about besides which fortune 500 company needs a bailout next. We> > need> > > > a bailout here and now.> > > >> > >> >>

[Guest guest]

I really do not see my attitude as anything special - especially

since it is backed by my German hardheadedness and refusal to give

up. As my daddy always said - I am one stubborn Dutchman. LOL

>

> Jean... again, I sure admire your attitude.

> Surely, one of us, somewhere, will make a good connection with

someone else who can be helpful to our cause and then we could all

write letters to that someone...

> MamaSher, age 70. IPF 3-06, OR.

> Nasturtiums

> Don't fret about tomorrow, God is already there!

>

> Re: Pulmo visit tomorrow

>

>

> I just got home a little while from the doctor's. Took a detour

and

> stopped at this wonderful place to have some ribs. I considered

it my

> reward for going thru the pulmonary function torture and the 6

minute

> or till you crook walk.

>

> My functions took a significant drop (10 %) across the board

pretty

> much. But this is the first real serious drop at one time like

that.

> My DLCO is now 42% but I refuse to let things get me down. It

could be

> worse - that could have been my highest # instead of one of the

lower

> ones. I will still keep on going on and fighting this. Heck sure

> beats the alternative. Why waste what time I have left on a pity

> party. I knew that there would be tests like this at times. I'm

not

> happy with it but there is little I can do about it except use it

to

> make me more determined to fight and find voices to yell about it

for

> all of us.

>

> Maybe I will figure out a way to contact Obama's office again

like I

> did before election day. I need to give him something more to

think

> about besides which fortune 500 company needs a bailout next. We

need

> a bailout here and now.

>

[Guest guest]

Heck I would walk around with one on my butt if it would get

something done to get recognition of this disease and some real

research going.

> > > > >

> > > > > I just got home a little while from the doctor's. Took a

> detour

> > > and

> > > > > stopped at this wonderful place to have some ribs. I

> considered

> > > it my

> > > > > reward for going thru the pulmonary function torture and

the 6

> > > minute

> > > > > or till you crook walk.

> > > > >

> > > > > My functions took a significant drop (10 %) across the

board

> > > pretty

> > > > > much. But this is the first real serious drop at one time

like

> > > that.

> > > > > My DLCO is now 42% but I refuse to let things get me

down. It

> > > could be

> > > > > worse - that could have been my highest # instead of one

of

> the

> > > lower

> > > > > ones. I will still keep on going on and fighting this.

Heck

> sure

> > > > > beats the alternative. Why waste what time I have left on

a

> pity

> > > > > party. I knew that there would be tests like this at

times.

> I'm

> > > not

> > > > > happy with it but there is little I can do about it

except

> use it

> > > to

> > > > > make me more determined to fight and find voices to yell

> about it

> > > for

> > > > > all of us.

> > > > >

> > > > > Maybe I will figure out a way to contact Obama's office

again

> > > like I

> > > > > did before election day. I need to give him something

more to

> > > think

> > > > > about besides which fortune 500 company needs a bailout

next.

> We

> > > need

> > > > > a bailout here and now.

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Jean ... as I like to say, keep on keepin' on girl!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: Pulmo visit tomorrow> > > I just got home a little while from the doctor's. Took a detour and > stopped at this wonderful place to have some ribs. I considered it my > reward for going thru the pulmonary function torture and the 6 minute > or till you crook walk.> > My functions took a significant drop (10 %) across the board pretty > much. But this is the first real serious drop at one time like that. > My DLCO is now 42% but I refuse to let things get me down. It could be > worse - that could have been my highest # instead of one of the lower > ones. I will still keep on going on and fighting this. Heck sure > beats the alternative. Why waste what time I have left on a pity > party. I knew that there would be tests like this at times. I'm not > happy with it but there is little I can do about it except use it to > make me more determined to fight and find voices to yell about it for > all of us.> > Maybe I will figure out a way to contact Obama's office again like I > did before election day. I need to give him something more to think > about besides which fortune 500 company needs a bailout next. We need > a bailout here and now.>