Re: Update of Barbara McD

[Guest guest]

Barb,

So happy to hear about the improvement! Such good news to hear. The use of oxygen wouldn't have any real bearing on your pft results. They are measuring things like your ability to physically pull air in, your lung volumes, diffusing capacity etc. None of those things are affected by your use of oxygen. Are you actually using your O2 during the test? I have the nose clips on so there is no way for me to use oxygen during the test. Same for you? As far as resting in between, I have to because each test usually induces a coughing fit so I have to stop and get past that before I can continue.

And as for the 6 minute walk...I would expect it to improve with oxygen. You can walk further and faster probably with oxygen because you're giving your body what it needs. I couldn't do a 6 minute walk without oxygen in a million years. I'd hit the floor at the 50 second or so mark. So your improvement on the walk is probably a combination of the pred and the O2, your improvement on the pft is likely a result of the pred and not anything to do with your using the O2.

Does that make sense?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sat, January 23, 2010 9:42:49 AMSubject: Update of Barbara McD

Went to Emory yesterday; saw Dr. Staton. I have been on oxygen 24/7 2 liter since early July and have been taking 40 mg of prednisone since August. I had almost stopped coughing for a while, but it's creeping back a little now. My energy level had improved when I started oxygen, and then went through the roof with the addition of prednisone; I'm back to taking occasional naps now. The Raynaud's seemed gone, actually, but fingers have been back to turning blue for the past week or so. I have a slight tremor, and I have gained 20 pounds!!!!!!Anyway.....Dr. Staton says ALL my numbers show slight improvement -- great news! I will be immediately reducing the prednisone to 30 mg, and then in a month to 20 mg. I stay at the lower dose for 3 months and then see him again. Here's a question for those on oxygen. When doing PFTs, do you stop after each test and breath oxygen for a while? Do you do the six minute walk with oxygen on? The

reason I ask is that when I did previous PFTs/walks I wasn't on oxygen, and this morning I'm wondering if the use of oxygen during yesterday's tests might be a reason for the better numbers.

[Guest guest]

because i always did 6 min walks on room air, when they wanted me to use o2 i refused

i wanted to compare apples to apples, not apples to oranges

so i continue to do 6 min walks on room air

there is oxygen available just in case i need it

as to the pfts, i have always done them on room air and didn't know they could be done using o2

glad there is improvement

glad he is gradually weaning the prednisone to a lower level

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Update of Barbara McDTo: Breathe-Support Date: Saturday, January 23, 2010, 9:42 AM

Went to Emory yesterday; saw Dr. Staton. I have been on oxygen 24/7 2 liter since early July and have been taking 40 mg of prednisone since August. I had almost stopped coughing for a while, but it's creeping back a little now. My energy level had improved when I started oxygen, and then went through the roof with the addition of prednisone; I'm back to taking occasional naps now. The Raynaud's seemed gone, actually, but fingers have been back to turning blue for the past week or so. I have a slight tremor, and I have gained 20 pounds!!!!!!Anyway.....Dr. Staton says ALL my numbers show slight improvement -- great news! I will be immediately reducing the prednisone to 30 mg, and then in a month to 20 mg. I stay at the lower dose for 3 months and then see him again. Here's a question for those on oxygen. When doing PFTs, do you stop after each test and breath oxygen for a while? Do you do the six minute walk with oxygen on? The

reason I ask is that when I did previous PFTs/walks I wasn't on oxygen, and this morning I'm wondering if the use of oxygen during yesterday's tests might be a reason for the better numbers.

[Guest guest]

Barbara

Yes, one who needs oxygen does typically use some to get their sats back

between each test. Would your tests be worse if you were totally short

of breath before starting? Yes. Also so many other conditions can impact

your test on a given day, including the fact you may get better at the

test. Thats why trends are more significant than a single PFT.

As to six minute walk many start you without and quickly add it as

required. In my case, I can't make it far enough without to do that.

I've had it administered differently in different places. One will start

and take you through at the oxygen flow you normally need while another

might start you at the lowest flow you use and increase the flow as

needed during the test.

>

> Went to Emory yesterday; saw Dr. Staton. I have been on oxygen 24/7 2

liter since early July and have been taking 40 mg of prednisone since

August. I had almost stopped coughing for a while, but it's creeping

back a little now. My energy level had improved when I started oxygen,

and then went through the roof with the addition of prednisone; I'm back

to taking occasional naps now. The Raynaud's seemed gone, actually, but

fingers have been back to turning blue for the past week or so. I have a

slight tremor, and I have gained 20 pounds!!!!!!

>

> Anyway.....

>

> Dr. Staton says ALL my numbers show slight improvement -- great news!

I will be immediately reducing the prednisone to 30 mg, and then in a

month to 20 mg. I stay at the lower dose for 3 months and then see him

again.

>

> Here's a question for those on oxygen. When doing PFTs, do you stop

after each test and breath oxygen for a while? Do you do the six minute

walk with oxygen on? The reason I ask is that when I did previous

PFTs/walks I wasn't on oxygen, and this morning I'm wondering if the use

of oxygen during yesterday's tests might be a reason for the better

numbers.

>

[Guest guest]

Pink

I can't do a six minute walk on room air. I couldn't make it. I drop to

80% in less than thirty seconds of walk so I'd be in the 60%'s and

collapsing during the walk.

So, as they compare it becomes distance and oxygen used that have to be

compared.

The only six minute walk I've ever had with no oxygen was the one in my

primary physician's office that got me the referral to the

pulmonologist.

>

>

> From: Barbara McD bamny@...

> Subject: Update of Barbara McD

> To: Breathe-Support

> Date: Saturday, January 23, 2010, 9:42 AM

>

>

> Â

>

>

>

> Went to Emory yesterday; saw Dr. Staton. I have been on oxygen 24/7 2

liter since early July and have been taking 40 mg of prednisone since

August. I had almost stopped coughing for a while, but it's creeping

back a little now. My energy level had improved when I started oxygen,

and then went through the roof with the addition of prednisone; I'm back

to taking occasional naps now. The Raynaud's seemed gone, actually, but

fingers have been back to turning blue for the past week or so. I have a

slight tremor, and I have gained 20 pounds!!!!!!

>

> Anyway.....

>

> Dr. Staton says ALL my numbers show slight improvement -- great news!

I will be immediately reducing the prednisone to 30 mg, and then in a

month to 20 mg. I stay at the lower dose for 3 months and then see him

again.

>

> Here's a question for those on oxygen. When doing PFTs, do you stop

after each test and breath oxygen for a while? Do you do the six minute

walk with oxygen on? The reason I ask is that when I did previous

PFTs/walks I wasn't on oxygen, and this morning I'm wondering if the use

of oxygen during yesterday's tests might be a reason for the better

numbers.

>

[Guest guest]

Thanks, Pink, Bruce, Beth. I have another question. I probably should have asked the dr this but..... on the test results, how do I find my total lung capacity?

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Counting my blessings: #32 - Good numbers!

Consider what a great forest is set ablaze by a small spark. ( 3:5)

To: Breathe-Support Sent: Sat, January 23, 2010 11:33:21 AMSubject: Re: Update of Barbara McD

BarbaraYes, one who needs oxygen does typically use some to get their sats backbetween each test. Would your tests be worse if you were totally shortof breath before starting? Yes. Also so many other conditions can impactyour test on a given day, including the fact you may get better at thetest. Thats why trends are more significant than a single PFT.As to six minute walk many start you without and quickly add it asrequired. In my case, I can't make it far enough without to do that.I've had it administered differently in different places. One will startand take you through at the oxygen flow you normally need while anothermight start you at the lowest flow you use and increase the flow asneeded during the test.>> Went to Emory yesterday; saw Dr. Staton. I have been on oxygen 24/7 2liter since early July and have been taking 40 mg of prednisone sinceAugust. I had almost stopped coughing for a while, but it's creepingback a little now. My energy level had improved when I started oxygen,and then went through the roof with the addition of prednisone; I'm backto taking occasional naps now. The Raynaud's seemed gone, actually, butfingers have been back to turning blue for the past week or so. I have aslight tremor, and I have gained 20 pounds!!!!!!>> Anyway.....>> Dr. Staton says ALL my numbers show slight improvement -- great news! I will be immediately reducing the prednisone to 30 mg, and then in amonth to 20 mg. I stay at the lower dose for 3 months and then see himagain.>> Here's a question for those on oxygen. When doing PFTs, do you

stopafter each test and breath oxygen for a while? Do you do the six minutewalk with oxygen on? The reason I ask is that when I did previousPFTs/walks I wasn't on oxygen, and this morning I'm wondering if the useof oxygen during yesterday's tests might be a reason for the betternumbers.>

[Guest guest]

Barbara

TLC would be Total Lung Capacity. It will be in the second section of

results under " lung volumes " as opposed to the first section which is

" spirometry " . However, it really isn't the most significant number to

us. FVC, FEV1 and DLCO are going to be those most looked at. FVC will

generally be looked at more for PF'ers and FEV1 for COPD'ers. The

relationship between the absolute values of those two is also helped to

determine whether one likely has a restrictive or obstructive disease.

Whereas DLCO is an important value, it is the most fluctuating and most

subject to variables and error of the values. It can bounce around

wildly in tests and not be indicative therefore of what is going on. It

can also be difficult to test and in some patients an accurate reading

of DLCO may not be possible. I'm generally able to get it at the

teaching hospitals and rarely able to at my doctor's office. Therefore,

I only have it in 5 of my 9 PFT's.

Since you mentioned TLC, I will note that my TLC hasn't followed my FVC

at all and is skewed at least in part by my improved ability at the test

itself.

> >

> > Went to Emory yesterday; saw Dr. Staton. I have been on oxygen 24/7

2

> liter since early July and have been taking 40 mg of prednisone since

> August. I had almost stopped coughing for a while, but it's creeping

> back a little now. My energy level had improved when I started oxygen,

> and then went through the roof with the addition of prednisone; I'm

back

> to taking occasional naps now. The Raynaud's seemed gone, actually,

but

> fingers have been back to turning blue for the past week or so. I have

a

> slight tremor, and I have gained 20 pounds!!!!!!

> >

> > Anyway.....

> >

> > Dr. Staton says ALL my numbers show slight improvement -- great

news!

> I will be immediately reducing the prednisone to 30 mg, and then in a

> month to 20 mg. I stay at the lower dose for 3 months and then see him

> again.

> >

> > Here's a question for those on oxygen. When doing PFTs, do you stop

> after each test and breath oxygen for a while? Do you do the six

minute

> walk with oxygen on? The reason I ask is that when I did previous

> PFTs/walks I wasn't on oxygen, and this morning I'm wondering if the

use

> of oxygen during yesterday's tests might be a reason for the better

> numbers.

> >

>

[Guest guest]

Bruce: So if the "% Pred" on FVC is 67, and the "% Pred" on TLC is 68 that would mean my lung capacity is at roughly 68%?

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Counting my blessings: #32 - Good numbers!

Consider what a great forest is set ablaze by a small spark. ( 3:5)

To: Breathe-Support Sent: Sat, January 23, 2010 1:48:32 PMSubject: Re: Update of Barbara McD

BarbaraTLC would be Total Lung Capacity. It will be in the second section ofresults under "lung volumes" as opposed to the first section which is"spirometry" . However, it really isn't the most significant number tous. FVC, FEV1 and DLCO are going to be those most looked at. FVC willgenerally be looked at more for PF'ers and FEV1 for COPD'ers. Therelationship between the absolute values of those two is also helped todetermine whether one likely has a restrictive or obstructive disease.Whereas DLCO is an important value, it is the most fluctuating and mostsubject to variables and error of the values. It can bounce aroundwildly in tests and not be indicative therefore of what is going on. Itcan also be difficult to test and in some patients an accurate readingof DLCO may not be possible. I'm generally able to get it at theteaching hospitals and rarely able to at my doctor's office. Therefore,I

only have it in 5 of my 9 PFT's.Since you mentioned TLC, I will note that my TLC hasn't followed my FVCat all and is skewed at least in part by my improved ability at the testitself.> >> > Went to Emory yesterday; saw Dr. Staton. I have been on oxygen 24/72> liter since early July and have been taking 40 mg of prednisone since> August. I had almost stopped coughing for a while, but it's creeping> back a little now. My energy level had improved when I started oxygen,> and then went through the roof with the addition of prednisone; I'mback> to taking occasional naps now. The Raynaud's seemed gone, actually,but> fingers have been back to turning blue for the past week or

so. I havea> slight tremor, and I have gained 20 pounds!!!!!!> >> > Anyway.....> >> > Dr. Staton says ALL my numbers show slight improvement -- greatnews!> I will be immediately reducing the prednisone to 30 mg, and then in a> month to 20 mg. I stay at the lower dose for 3 months and then see him> again.> >> > Here's a question for those on oxygen. When doing PFTs, do you stop> after each test and breath oxygen for a while? Do you do the sixminute> walk with oxygen on? The reason I ask is that when I did previous> PFTs/walks I wasn't on oxygen, and this morning I'm wondering if theuse> of oxygen during yesterday's tests might be a reason for the better> numbers.> >>

[Guest guest]

Barbara

The FVC would be the number generally used as a quantifier of your

disease and would indicate the 67%. Yes, TLC at 68% does mean thats your

total lung capacity. However, FVC is the more used measurement as to the

amount of restriction. Note that 80% or above is generally considered in

a normal range so although you may feel like 67% is far below normal

(when you compare it to 100%) its closer than it would seem to a normal

acceptable range.

Just to give a little comparative perspective, at the time of diagnosis

my FVC was 44% and is now 37%.

Normal FEV1/FVC is generally 70-80%. Above that range generally

indicates a restrictive lung disease. Below that range generally

indicates an obstructive lung disease.

> > >

> > > Went to Emory yesterday; saw Dr. Staton. I have been on oxygen

24/7

> 2

> > liter since early July and have been taking 40 mg of prednisone

since

> > August. I had almost stopped coughing for a while, but it's creeping

> > back a little now. My energy level had improved when I started

oxygen,

> > and then went through the roof with the addition of prednisone; I'm

> back

> > to taking occasional naps now. The Raynaud's seemed gone, actually,

> but

> > fingers have been back to turning blue for the past week or so. I

have

> a

> > slight tremor, and I have gained 20 pounds!!!!!!

> > >

> > > Anyway.....

> > >

> > > Dr. Staton says ALL my numbers show slight improvement -- great

> news!

> > I will be immediately reducing the prednisone to 30 mg, and then in

a

> > month to 20 mg. I stay at the lower dose for 3 months and then see

him

> > again.

> > >

> > > Here's a question for those on oxygen. When doing PFTs, do you

stop

> > after each test and breath oxygen for a while? Do you do the six

> minute

> > walk with oxygen on? The reason I ask is that when I did previous

> > PFTs/walks I wasn't on oxygen, and this morning I'm wondering if the

> use

> > of oxygen during yesterday's tests might be a reason for the better

> > numbers.

> > >

> >

>

[Guest guest]

Bruce - Thank you SO much. That clears my head a little.

B

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Counting my blessings: #32 - Good numbers!

Consider what a great forest is set ablaze by a small spark. ( 3:5)

To: Breathe-Support Sent: Sat, January 23, 2010 2:16:17 PMSubject: Re: Update of Barbara McD

BarbaraThe FVC would be the number generally used as a quantifier of yourdisease and would indicate the 67%. Yes, TLC at 68% does mean thats yourtotal lung capacity. However, FVC is the more used measurement as to theamount of restriction. Note that 80% or above is generally considered ina normal range so although you may feel like 67% is far below normal(when you compare it to 100%) its closer than it would seem to a normalacceptable range.Just to give a little comparative perspective, at the time of diagnosismy FVC was 44% and is now 37%.Normal FEV1/FVC is generally 70-80%. Above that range generallyindicates a restrictive lung disease. Below that range generallyindicates an obstructive lung disease.> > >> > > Went to Emory yesterday; saw Dr. Staton. I have been on oxygen24/7> 2> > liter since early July and have been taking 40 mg of prednisonesince> > August. I had almost stopped coughing for a while, but it's creeping> > back a little now. My energy level had improved when I startedoxygen,> > and then went through the roof with the addition of prednisone; I'm> back> > to taking occasional naps now.

The Raynaud's seemed gone, actually,> but> > fingers have been back to turning blue for the past week or so. Ihave> a> > slight tremor, and I have gained 20 pounds!!!!!!> > >> > > Anyway.....> > >> > > Dr. Staton says ALL my numbers show slight improvement -- great> news!> > I will be immediately reducing the prednisone to 30 mg, and then ina> > month to 20 mg. I stay at the lower dose for 3 months and then seehim> > again.> > >> > > Here's a question for those on oxygen. When doing PFTs, do youstop> > after each test and breath oxygen for a while? Do you do the six> minute> > walk with oxygen on? The reason I ask is that when I did previous> > PFTs/walks I wasn't on oxygen, and this morning I'm wondering if the> use> > of oxygen during

yesterday's tests might be a reason for the better> > numbers.> > >> >>

[Guest guest]

I had the 6 minute walk first without oxygen. Then they had me rest for awhile and did a 3 minute walk with oxygen.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia IdahoSubject: Update of Barbara McDTo: Breathe-Support Date: Saturday, January 23, 2010, 6:42 AM

Went to Emory yesterday; saw Dr. Staton. I have been on oxygen 24/7 2 liter since early July and have been taking 40 mg of prednisone since August. I had almost stopped coughing for a while, but it's creeping back a little now. My energy level had improved when I started oxygen, and then went through the roof with the addition of prednisone; I'm back to taking occasional naps now. The Raynaud's seemed gone, actually, but fingers have been back to turning blue for the past week or so. I have a slight tremor, and I have gained 20 pounds!!!!!!

Anyway.....

Dr. Staton says ALL my numbers show slight improvement -- great news! I will be immediately reducing the prednisone to 30 mg, and then in a month to 20 mg. I stay at the lower dose for 3 months and then see him again.

Here's a question for those on oxygen. When doing PFTs, do you stop after each test and breath oxygen for a while? Do you do the six minute walk with oxygen on? The reason I ask is that when I did previous PFTs/walks I wasn't on oxygen, and this morning I'm wondering if the use of oxygen during yesterday's tests might be a reason for the better numbers.

[Guest guest]

Barbara

You're welcome. They tell us we're x% and give us a piece of paper if we

ask but then we are left having no idea what it means much of the time.

> > > >

> > > > Went to Emory yesterday; saw Dr. Staton. I have been on oxygen

> 24/7

> > 2

> > > liter since early July and have been taking 40 mg of prednisone

> since

> > > August. I had almost stopped coughing for a while, but it's

creeping

> > > back a little now. My energy level had improved when I started

> oxygen,

> > > and then went through the roof with the addition of prednisone;

I'm

> > back

> > > to taking occasional naps now. The Raynaud's seemed gone,

actually,

> > but

> > > fingers have been back to turning blue for the past week or so. I

> have

> > a

> > > slight tremor, and I have gained 20 pounds!!!!!!

> > > >

> > > > Anyway.....

> > > >

> > > > Dr. Staton says ALL my numbers show slight improvement -- great

> > news!

> > > I will be immediately reducing the prednisone to 30 mg, and then

in

> a

> > > month to 20 mg. I stay at the lower dose for 3 months and then see

> him

> > > again.

> > > >

> > > > Here's a question for those on oxygen. When doing PFTs, do you

> stop

> > > after each test and breath oxygen for a while? Do you do the six

> > minute

> > > walk with oxygen on? The reason I ask is that when I did previous

> > > PFTs/walks I wasn't on oxygen, and this morning I'm wondering if

the

> > use

> > > of oxygen during yesterday's tests might be a reason for the

better

> > > numbers.

> > > >

> > >

> >

>

[Guest guest]

barbara

the numbers themselves don't mean anything to me

i compare the current numbers to the previous numbers and see what goes up and what goes down and what stays the same

all of the numbers vary with each pft

if there is a graph with the print out, look at that, i makes it easier to see visually the trend

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Update of Barbara McDTo: Breathe-Support Date: Saturday, January 23, 2010, 5:02 PM

BarbaraYou're welcome. They tell us we're x% and give us a piece of paper if weask but then we are left having no idea what it means much of the time.> > > >> > > > Went to Emory yesterday; saw Dr. Staton. I have been on oxygen> 24/7> > 2> > > liter since early July and have been taking 40 mg of prednisone> since> > > August. I had almost stopped coughing for a while, but it'screeping> > > back a little now. My energy level had improved when I started> oxygen,> > > and then went through the roof with the addition of prednisone;I'm> > back> > > to taking occasional naps now. The Raynaud's seemed gone,actually,> > but> > > fingers have

been back to turning blue for the past week or so. I> have> > a> > > slight tremor, and I have gained 20 pounds!!!!!!> > > >> > > > Anyway.....> > > >> > > > Dr. Staton says ALL my numbers show slight improvement -- great> > news!> > > I will be immediately reducing the prednisone to 30 mg, and thenin> a> > > month to 20 mg. I stay at the lower dose for 3 months and then see> him> > > again.> > > >> > > > Here's a question for those on oxygen. When doing PFTs, do you> stop> > > after each test and breath oxygen for a while? Do you do the six> > minute> > > walk with oxygen on? The reason I ask is that when I did previous> > > PFTs/walks I wasn't on oxygen, and this morning I'm wondering ifthe> >

use> > > of oxygen during yesterday's tests might be a reason for thebetter> > > numbers.> > > >> > >> >>

[Guest guest]

Barbara/Pink

And if not a graph make your own. Also, never be deceived when the PFT

doesn't reflect what you really know from your sob and your saturations.

> > > > >

> > > > > Went to Emory yesterday; saw Dr. Staton. I have been on oxygen

> > 24/7

> > > 2

> > > > liter since early July and have been taking 40 mg of prednisone

> > since

> > > > August. I had almost stopped coughing for a while, but it's

> creeping

> > > > back a little now. My energy level had improved when I started

> > oxygen,

> > > > and then went through the roof with the addition of prednisone;

> I'm

> > > back

> > > > to taking occasional naps now. The Raynaud's seemed gone,

> actually,

> > > but

> > > > fingers have been back to turning blue for the past week or so.

I

> > have

> > > a

> > > > slight tremor, and I have gained 20 pounds!!!!!!

> > > > >

> > > > > Anyway.....

> > > > >

> > > > > Dr. Staton says ALL my numbers show slight improvement --

great

> > > news!

> > > > I will be immediately reducing the prednisone to 30 mg, and then

> in

> > a

> > > > month to 20 mg. I stay at the lower dose for 3 months and then

see

> > him

> > > > again.

> > > > >

> > > > > Here's a question for those on oxygen. When doing PFTs, do you

> > stop

> > > > after each test and breath oxygen for a while? Do you do the six

> > > minute

> > > > walk with oxygen on? The reason I ask is that when I did

previous

> > > > PFTs/walks I wasn't on oxygen, and this morning I'm wondering if

> the

> > > use

> > > > of oxygen during yesterday's tests might be a reason for the

> better

> > > > numbers.

> > > > >

> > > >

> > >

> >

>

[Guest guest]

That's great news Barb....hope it continues in that direction.

Good questions re O2 & PFT's.....I'll look out for all the Boffins' answers on taht one!

Thanks for you good wishes too......Life is full of surprises Heh!

Love,

>> Went to Emory yesterday; saw Dr. Staton. I have been on oxygen 24/7 2 liter since early July and have been taking 40 mg of prednisone since August. I had almost stopped coughing for a while, but it's creeping back a little now. My energy level had improved when I started oxygen, and then went through the roof with the addition of prednisone; I'm back to taking occasional naps now. The Raynaud's seemed gone, actually, but fingers have been back to turning blue for the past week or so. I have a slight tremor, and I have gained 20 pounds!!!!!!> > Anyway.....> > Dr. Staton says ALL my numbers show slight improvement -- great news! I will be immediately reducing the prednisone to 30 mg, and then in a month to 20 mg. I stay at the lower dose for 3 months and then see him again. > > Here's a question for those on oxygen. When doing PFTs, do you stop after each test and breath oxygen for a while? Do you do the six minute walk with oxygen on? The reason I ask is that when I did previous PFTs/walks I wasn't on oxygen, and this morning I'm wondering if the use of oxygen during yesterday's tests might be a reason for the better numbers.>

[Guest guest]

Hi Barb,

My 6mw are done with oxygen. I told them I was using 3lpm for exertion now but because my med record says 2lpm that's what they set it on for my 6mw and I dropped to 89 at the end of the walk. She said I guess you do need 3lpm. My doctor added the diagnosis of hypoxia to my med record.

The PFT is normally done before the 6mw and not performed with O2, I don't think its possible with the closepin on the nose. I have had 3 PFTs since my diagnosis. The first test was terribly low in all areas, the second test was done after 3 months of meds, prednisone at 40mg and my numbers improved. Prednisone was lowered to 15mg by the time of my third test in December and the numbers were low, my FVC was 51% and my DLCO was 42%. My doc increased prednisone to 20mg and I go back for PFTs in a couple of weeks.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Sat, January 23, 2010 6:42:49 AMSubject: Update of Barbara McD

Went to Emory yesterday; saw Dr. Staton. I have been on oxygen 24/7 2 liter since early July and have been taking 40 mg of prednisone since August. I had almost stopped coughing for a while, but it's creeping back a little now. My energy level had improved when I started oxygen, and then went through the roof with the addition of prednisone; I'm back to taking occasional naps now. The Raynaud's seemed gone, actually, but fingers have been back to turning blue for the past week or so. I have a slight tremor, and I have gained 20 pounds!!!!!!Anyway.....Dr. Staton says ALL my numbers show slight improvement -- great news! I will be immediately reducing the prednisone to 30 mg, and then in a month to 20 mg. I stay at the lower dose for 3 months and then see him again. Here's a question for those on oxygen. When doing PFTs, do you stop after each test and breath oxygen for a while? Do you do the six minute walk with oxygen on? The

reason I ask is that when I did previous PFTs/walks I wasn't on oxygen, and this morning I'm wondering if the use of oxygen during yesterday's tests might be a reason for the better numbers.