Hello everyone, I'm new...

[Guest guest]

Hello to all. I have not been on line for ages. My name is . I have read all and as before I learn so much. I am pleased to recognize names with a few new names. As for me I was able to get off Prednisone but stay on Imuran and Bactrum as well as a bunch of nerve medicines for leftover nerve problems for the open lung biopsy. I just passed my three 1/2 year mark in August (since my diagnosis). I've lost 50% of my lungs on both sides due to fibrosis. After being diagnosed with IPF for 1 1/2 years, they now say NSIP. My nine year old girl, , is typing this for me. She is MUCH faster than I am. I type the first 3 sentences and it took me a half hour! So if ever you are waiting for a response from me, including today,

please remember, it may take me a while. Scratch that, it WILL take me a while! I have a question for any of you willing to answer. In the past four days, I have woken up tired. I am drowsy the whole day. When I sit, I often find myself almost falling asleep. I am afraid to drive and I have been feeling a little bit dizzy during at times during the day. I haven't used oxygen for a year, and feel ignorant when I should use it. I remember when I was fully breathless I would use it, but what about these symptoms? Thank you ahead of time for ANY response.

-

NSIP, 3/05, UC

land

hello to everyoneTo: Breathe-Support Date: Tuesday, September 23, 2008, 7:22 AM

Hi Gang,

first I would like to say I was so so sorry to read about joyce

she was such an inspiration to all

mistie and I have been busy with kids and chemo ,the chemo has started to get to me now , the first and second session didn't bother me to much ,but this last one I had on monday has really knocked me for a loop I feel as though I just got run over by a truckI am still working but I don't know how much longer I will be able to keep that up and nowof course my hair is gone but I don't mind that so muchI will know how the treatment is helping in about a week or so I will keep you all posted .

just wanted to let you all know ... IM STILL KICKING

Brett Bowser 40 MI.

familial UIP/IPF 11/07

stage 4 lung cancer 7/08

[Guest guest]

Definitely sounds like you may need oxygen, although there could be

other problems. The only way to know is to use an oximeter. Why did you

stop using oxygen? If your SATS are dropping below 90%, you need it.

Also, to check overnight they would need to use a recording oximeter for

a night. If oxygen turns out not to be the problem, then sounds like a

sleep study might well be in order.

>

> From: brett bowser brett@...

> Subject: hello to everyone

> To: Breathe-Support

> Date: Tuesday, September 23, 2008, 7:22 AM

>

>

> Hi Gang,

>

> first I would like to say I was so so sorry to read about joyce

> she was such an inspiration to all

>

> mistie and I have been busy with kids and chemo ,

>

> the chemo has started to get to me now , the first and second session

> didn't bother me to much ,

> but this last one I had on monday has really knocked me for a loop I

> feel as though I just got run over by a truck

> I am still working but I don't know how much longer I will

> be able to keep that up and now

> of course my hair is gone but I don't mind that so much

> I will know how the treatment is helping in about a week or so I will

> keep you all posted .

> just wanted to let you all know ... IM STILL KICKING

>

>

> Brett Bowser 40 MI.

> familial UIP/IPF 11/07

> stage 4 lung cancer 7/08

>

[Guest guest]

Bruce,

I stopped because I was registering 94...and only seemed to go down on activity level. I do not have a oximeter, my Pul Dr. felt it was't needed. I lately have lost some faith in him.

hello to everyone> To: Breathe-Support@ yahoogroups. com> Date: Tuesday, September 23, 2008, 7:22 AM>>> Hi Gang,>> first I would like to say I was so so sorry to read about joyce> she was such an inspiration to all>> mistie and I have been busy with kids and chemo ,>> the chemo has started to get to me now , the first and second session> didn't bother me to much ,> but this last one I had on monday has really knocked me for a loop I> feel as though I just got run over by a truck> I am still working but I don't know how much longer I will> be able to keep that up and now> of course my hair is gone but I don't mind that so much> I will know how the treatment is helping in

about a week or so I will> keep you all posted .> just wanted to let you all know ... IM STILL KICKING>>> Brett Bowser 40 MI.> familial UIP/IPF 11/07> stage 4 lung cancer 7/08>

[Guest guest]

Hi ,

I'm glad you decided to post again! I'm happy that you're still kickin 3 1/2 years after diagnosis!

To address your questions, I would strongly suggest you purchase an oximeter. That will tell you whether or not you should still be using O2. When was the last time you saw a pulmonologist? You might want to make an appointment and ask to have at least a pulmonary function test and a 6 minute walk. Since you're waking up exhausted I would also ask for a sleep study. If you have sleep apnea you would not be getting any rest and your sats could be running dangerously low at night. It should at least be checked.

Basically you need supplementary O2 anytime your sats drop below 90. Anything lower than that for more than a couple of minutes causes damage in other organs in your body. Cells die, heart cells, liver cells, brain cells, kidney cells. They die and organ damage happens. As much of a pain in the bum as O2 can be at times I know I have to use it to keep me healthy.

I hope you stay healthy! Look after yourself!

Beth-Moderator

Fibrotic NSIP 06/06 UCTD 06/08

hello to everyoneTo: Breathe-Support@ yahoogroups. comDate: Tuesday, September 23, 2008, 7:22 AM

Hi Gang,

first I would like to say I was so so sorry to read about joyce

she was such an inspiration to all

mistie and I have been busy with kids and chemo ,the chemo has started to get to me now , the first and second session didn't bother me to much ,but this last one I had on monday has really knocked me for a loop I feel as though I just got run over by a truckI am still working but I don't know how much longer I will be able to keep that up and nowof course my hair is gone but I don't mind that so muchI will know how the treatment is helping in about a week or so I will keep you all posted .

just wanted to let you all know ... IM STILL KICKING

Brett Bowser 40 MI.

familial UIP/IPF 11/07

stage 4 lung cancer 7/08

[Guest guest]

Well, I strongly believe anyone with PF should have an oximeter and they

are available for as little as $65. You need to discuss the symptoms

with him. You didn't say under what conditions you were registering 94,

but its impossible for a doctor to observe you under all conditions.

Activity has a much greater impact on those of us with PF than it does

on COPD patients. I'm sitting here on the sofa right now at 96 with my

oxygen off. However, if I got up and walked 10 feet I'd be at 86. If I

exerted myself I'd be quickly in the 70's. So, I use from 0-2 lpm

sitting and from 3-5 lpm on exertion. And, there are some forms of

exertion that even 5 would not be enough so I don't do those.

> >

> > From: brett bowser brett@

> > Subject: hello to everyone

> > To: Breathe-Support@ yahoogroups. com

> > Date: Tuesday, September 23, 2008, 7:22 AM

> >

> >

> > Hi Gang,

> >

> > first I would like to say I was so so sorry to read about joyce

> > she was such an inspiration to all

> >

> > mistie and I have been busy with kids and chemo ,

> >

> > the chemo has started to get to me now , the first and second

session

> > didn't bother me to much ,

> > but this last one I had on monday has really knocked me for a loop I

> > feel as though I just got run over by a truck

> > I am still working but I don't know how much longer I will

> > be able to keep that up and now

> > of course my hair is gone but I don't mind that so much

> > I will know how the treatment is helping in about a week or so I

will

> > keep you all posted .

> > just wanted to let you all know ... IM STILL KICKING

> >

> >

> > Brett Bowser 40 MI.

> > familial UIP/IPF 11/07

> > stage 4 lung cancer 7/08

> >

>

[Guest guest]

susan--get an oximeter!!! ASAP

you need to keep those SATs up

remember, the key word is "supplemental"

everyone uses oxygen

some of us need "supplemental" oxygen to keep our o2 levels upPink Joyce IPF 3/06 Pennslvania

Subject: Re: Re: Hello everyone, I'm new...To: Breathe-Support Date: Tuesday, September 23, 2008, 5:12 PM

Bruce,

I stopped because I was registering 94...and only seemed to go down on activity level. I do not have a oximeter, my Pul Dr. felt it was't needed. I lately have lost some faith in him.

hello to everyone> To: Breathe-Support@ yahoogroups. com> Date: Tuesday, September 23, 2008, 7:22 AM>>> Hi Gang,>> first I would like to say I was so so sorry to read about joyce> she was such an inspiration to all>> mistie and I have been busy with kids and chemo ,>> the chemo has started to get to me now , the first and second session> didn't bother me to much ,> but this last one I had on monday has really knocked me for a loop I> feel as though I just got run over by a truck> I am still working but I don't know how much longer I will> be able to keep that up and now> of course my hair is gone but I don't mind that so much> I will know how the treatment is helping in about a week or so I will> keep you all posted .> just wanted to let you all know ... IM STILL KICKING>>> Brett Bowser 40 MI.>

familial UIP/IPF 11/07> stage 4 lung cancer 7/08>

[Guest guest]

My husband called my Pul Dr. and he said I have to move around to get energy not sit inactive. ...But of course use the oxygen if needed! Sometimes I doubt what I am able to do. The Dr. is going to call and I am not feeling like he hears at times. I will get the oximeter and have the answer for this. Thanks Beth for your welcome back!!!! I sit here now on oxygen and have to soon help dinner making if I don't fall asleep.

hello to everyone> > To: Breathe-Support@ yahoogroups. com> > Date: Tuesday, September 23, 2008, 7:22 AM> >> >> > Hi Gang,> >> > first I would like to say I was so so sorry

to read about joyce> > she was such an inspiration to all> >> > mistie and I have been busy with kids and chemo ,> >> > the chemo has started to get to me now , the first and secondsession> > didn't bother me to much ,> > but this last one I had on monday has really knocked me for a loop I> > feel as though I just got run over by a truck> > I am still working but I don't know how much longer I will> > be able to keep that up and now> > of course my hair is gone but I don't mind that so much> > I will know how the treatment is helping in about a week or so Iwill> > keep you all posted .> > just wanted to let you all know ... IM STILL KICKING> >> >> > Brett Bowser 40 MI.> > familial UIP/IPF 11/07> > stage 4 lung cancer 7/08>

>>

[Guest guest]

, I would like to suggest that you talk to your Pulmo about a

Pulmonary Rehab class. I had to take one in order to progress in the

Lung Transplant Program - it was very helpful in getting started on a

meaningful program of excercise and activity. It really helps to be

active and keep the lungs and diaphram working. It also helps you

get in tune with your body and what levels your SATS might be at

various levels of activity. They help you to determine what your

oxygen needs are at rest, with light activity, moderate activity, and

high activity.

Steve aka...Knip Dx 9/07 confirmed via VATS 12/07

56 NH

> > >

> > > From: brett bowser brett@

> > > Subject: hello to everyone

> > > To: Breathe-Support@ yahoogroups. com

> > > Date: Tuesday, September 23, 2008, 7:22 AM

> > >

> > >

> > > Hi Gang,

> > >

> > > first I would like to say I was so so sorry to read about joyce

> > > she was such an inspiration to all

> > >

> > > mistie and I have been busy with kids and chemo ,

> > >

> > > the chemo has started to get to me now , the first and second

> session

> > > didn't bother me to much ,

> > > but this last one I had on monday has really knocked me for a

loop I

> > > feel as though I just got run over by a truck

> > > I am still working but I don't know how much longer I will

> > > be able to keep that up and now

> > > of course my hair is gone but I don't mind that so much

> > > I will know how the treatment is helping in about a week or so I

> will

> > > keep you all posted .

> > > just wanted to let you all know ... IM STILL KICKING

> > >

> > >

> > > Brett Bowser 40 MI.

> > > familial UIP/IPF 11/07

> > > stage 4 lung cancer 7/08

> > >

> >

>

[Guest guest]

I don't recall you mentioning where you live. There could be some of us

in the area with good pulmonologist experiences or some recommendations

of teaching hospitals in the area which might help you. Could even be

some of us close to you.

> > >

> > > From: brett bowser brett@

> > > Subject: hello to everyone

> > > To: Breathe-Support@ yahoogroups. com

> > > Date: Tuesday, September 23, 2008, 7:22 AM

> > >

> > >

> > > Hi Gang,

> > >

> > > first I would like to say I was so so sorry to read about joyce

> > > she was such an inspiration to all

> > >

> > > mistie and I have been busy with kids and chemo ,

> > >

> > > the chemo has started to get to me now , the first and second

> session

> > > didn't bother me to much ,

> > > but this last one I had on monday has really knocked me for a loop

I

> > > feel as though I just got run over by a truck

> > > I am still working but I don't know how much longer I will

> > > be able to keep that up and now

> > > of course my hair is gone but I don't mind that so much

> > > I will know how the treatment is helping in about a week or so I

> will

> > > keep you all posted .

> > > just wanted to let you all know ... IM STILL KICKING

> > >

> > >

> > > Brett Bowser 40 MI.

> > > familial UIP/IPF 11/07

> > > stage 4 lung cancer 7/08

> > >

> >

>

[Guest guest]

the worst thing you can do for yourself is sit and become inactive

if you can't get to rehab, then talk a walk everyday

[i hope i get this right]

when you use your muscles on a regular basis, they will need less oxygen to work

it's about conditioning your body to the best of your ability

when i miss rehab too often, i can feel the deconditioning

i get tired more often faster than when i get conditioned

no i am not an athlete

20 - 25 minutes on the treadmill is a lot for me

i also do some strength training exercises

plus my dog needs to be walked

Pink Joyce IPF 3/06 Pennslvania

Subject: Re: Re: Hello everyone, I'm new...To: Breathe-Support Date: Tuesday, September 23, 2008, 6:30 PM

My husband called my Pul Dr. and he said I have to move around to get energy not sit inactive. ...But of course use the oxygen if needed! Sometimes I doubt what I am able to do. The Dr. is going to call and I am not feeling like he hears at times. I will get the oximeter and have the answer for this. Thanks Beth for your welcome back!!!! I sit here now on oxygen and have to soon help dinner making if I don't fall asleep.

hello to everyone> > To: Breathe-Support@ yahoogroups. com> > Date: Tuesday, September 23, 2008, 7:22 AM> >> >> > Hi Gang,> >> > first I would like to say I was so so sorry to read about joyce> > she was such an inspiration to all> >> > mistie and I have been

busy with kids and chemo ,> >> > the chemo has started to get to me now , the first and secondsession> > didn't bother me to much ,> > but this last one I had on monday has really knocked me for a loop I> > feel as though I just got run over by a truck> > I am still working but I don't know how much longer I will> > be able to keep that up and now> > of course my hair is gone but I don't mind that so much> > I will know how the treatment is helping in about a week or so Iwill> > keep you all posted .> > just wanted to let you all know ... IM STILL KICKING> >> >> > Brett Bowser 40 MI.> > familial UIP/IPF 11/07> > stage 4 lung cancer 7/08> >>