Kerry

[Guest guest]

Kerry,

If and when you get approved for supplemental 02, you can get all your nebulizer needs from the 02 provider. Evidently you have the Pari neb cup. That is what I use also. I can only get one every six months, but I keep them and reuse them. I checked and it's o.k. I had a real good stash but I was boiling them while I was visiting my daughter and burned the pan which melted my precious neb cups, etc.

I clean mine by washing in soapy water, then soaking in vinegar and water. I also bought a veggie steamer and do them in the microwave sometimes.

I have never gotten moisture in the neb tubing. My instructions said that you could just let the air flow through till moisture goes away. I do replace it every few months. I also use the nebulizer air to help dry the neb cups. You should not use them if they are wet. It is so hard to keep them clean and dry. Especially with one! You are not supposed to use a hair dryer (why?) or dry with a cloth, but I do blot with paper towels when I have to.

I know you hate the thought of 02 at your age! Believe me I understand. I didn't go out for a month after I began using it. I felt like everyone was looking at me when I did go out. The kids will only be worried and embarrassed if you are. I tell little kids who ask that it is no different than having to wear glasses, etc....that sometimes our body parts don't work as well as they should.

Have you been tested for reflux. It can cause your coughing to be worse.

I wish you felt better. I hate that you have to redo the PFT, but you need answers.

Take it easy this weekend!

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.

> > >> > > Joyce,> > >> > > You have right to complain when you feel awful.> > >> > > I wonder what we catch in the hospitals and rehabs. I do know> the one> > time I> > > went to rehab before coming to Fla. I became very ill. I was too> sick> > or> > > naïve to notice that they put the cannula in a plastic bag and> > reused it> > > when I came in. Got a whopper of an infection from it. No more.> I have> > > learned to speak up.> > >> > > I carry the disinfectant wipes with me anytime I leave the house.> > >> > > Hope you feel better.> > >> > > Fla.> > >> > >> > >> > > _____> > >> > > From: Breathe-Support > <mailto:Breathe-Support%40yahoogroups.com>> > > [mailto:Breathe-Support > <mailto:Breathe-Support%40yahoogroups.com> ] On Behalf Of Joyce> > > Sent: Thursday, June 28, 2007 2:21 PM> > > To: Breathe-Support > <mailto:Breathe-Support%40yahoogroups.com>> > > Subject: Sick and tired of being sick and blah> blah> > blah> > >> > >> > >> > > <http://www.smileycentral.com/?partner=ZSzeb001_ZSXXXXXX37>> Sicky Me> > here> > > to complain. Oh, I do it so well!> > >> > > After my tortorous PFT the other day, I felt so bad and started> with> > the> > > cold chills and fever. Went on to rehab yesturday, did not do so> good.> > > Started running a temp again yesturday evening...so back on the> > Levaquin.> > > Aaaargh!> > >> > > I am finding from rehab that I can not be active....walk, talk,> etc.> > on> > > pulse. Not even at 6. So we are trying to get info on the> regulator> > that> > > Beth uses. Hope they get that done soon. I have not been> able to> > get> > > out and about for a couple of months without my 02 dropping.> When I> > turn my> > > dial to continuous it puts out 2L.> > >> > > O.K. I feel better now. Everyone else have a good day!> > >> > > Hugs, Joyce D.> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > <http://smiley.smileycentral.com/download/index.jhtml?> partner=ZSzeb113_Z\> > SXXX> > > XXX37 & utm_id=7921>> > >> > > > > > > > > > > > > > > > > > > > > > Pink Joyce IPF 3/06 Pennslvania> > > > ---------------------------------> > Park yourself in front of a world of choices in alternative> vehicles.> > Visit the Yahoo! Auto Green Center.> >>

[Guest guest]

Kerry,

If and when you get approved for supplemental 02, you can get all your nebulizer needs from the 02 provider. Evidently you have the Pari neb cup. That is what I use also. I can only get one every six months, but I keep them and reuse them. I checked and it's o.k. I had a real good stash but I was boiling them while I was visiting my daughter and burned the pan which melted my precious neb cups, etc.

I clean mine by washing in soapy water, then soaking in vinegar and water. I also bought a veggie steamer and do them in the microwave sometimes.

I have never gotten moisture in the neb tubing. My instructions said that you could just let the air flow through till moisture goes away. I do replace it every few months. I also use the nebulizer air to help dry the neb cups. You should not use them if they are wet. It is so hard to keep them clean and dry. Especially with one! You are not supposed to use a hair dryer (why?) or dry with a cloth, but I do blot with paper towels when I have to.

I know you hate the thought of 02 at your age! Believe me I understand. I didn't go out for a month after I began using it. I felt like everyone was looking at me when I did go out. The kids will only be worried and embarrassed if you are. I tell little kids who ask that it is no different than having to wear glasses, etc....that sometimes our body parts don't work as well as they should.

Have you been tested for reflux. It can cause your coughing to be worse.

I wish you felt better. I hate that you have to redo the PFT, but you need answers.

Take it easy this weekend!

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.

> > >> > > Joyce,> > >> > > You have right to complain when you feel awful.> > >> > > I wonder what we catch in the hospitals and rehabs. I do know> the one> > time I> > > went to rehab before coming to Fla. I became very ill. I was too> sick> > or> > > naïve to notice that they put the cannula in a plastic bag and> > reused it> > > when I came in. Got a whopper of an infection from it. No more.> I have> > > learned to speak up.> > >> > > I carry the disinfectant wipes with me anytime I leave the house.> > >> > > Hope you feel better.> > >> > > Fla.> > >> > >> > >> > > _____> > >> > > From: Breathe-Support > <mailto:Breathe-Support%40yahoogroups.com>> > > [mailto:Breathe-Support > <mailto:Breathe-Support%40yahoogroups.com> ] On Behalf Of Joyce> > > Sent: Thursday, June 28, 2007 2:21 PM> > > To: Breathe-Support > <mailto:Breathe-Support%40yahoogroups.com>> > > Subject: Sick and tired of being sick and blah> blah> > blah> > >> > >> > >> > > <http://www.smileycentral.com/?partner=ZSzeb001_ZSXXXXXX37>> Sicky Me> > here> > > to complain. Oh, I do it so well!> > >> > > After my tortorous PFT the other day, I felt so bad and started> with> > the> > > cold chills and fever. Went on to rehab yesturday, did not do so> good.> > > Started running a temp again yesturday evening...so back on the> > Levaquin.> > > Aaaargh!> > >> > > I am finding from rehab that I can not be active....walk, talk,> etc.> > on> > > pulse. Not even at 6. So we are trying to get info on the> regulator> > that> > > Beth uses. Hope they get that done soon. I have not been> able to> > get> > > out and about for a couple of months without my 02 dropping.> When I> > turn my> > > dial to continuous it puts out 2L.> > >> > > O.K. I feel better now. Everyone else have a good day!> > >> > > Hugs, Joyce D.> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > <http://smiley.smileycentral.com/download/index.jhtml?> partner=ZSzeb113_Z\> > SXXX> > > XXX37 & utm_id=7921>> > >> > > > > > > > > > > > > > > > > > > > > > Pink Joyce IPF 3/06 Pennslvania> > > > ---------------------------------> > Park yourself in front of a world of choices in alternative> vehicles.> > Visit the Yahoo! Auto Green Center.> >>

[Guest guest]

Kerry,

If and when you get approved for supplemental 02, you can get all your nebulizer needs from the 02 provider. Evidently you have the Pari neb cup. That is what I use also. I can only get one every six months, but I keep them and reuse them. I checked and it's o.k. I had a real good stash but I was boiling them while I was visiting my daughter and burned the pan which melted my precious neb cups, etc.

I clean mine by washing in soapy water, then soaking in vinegar and water. I also bought a veggie steamer and do them in the microwave sometimes.

I have never gotten moisture in the neb tubing. My instructions said that you could just let the air flow through till moisture goes away. I do replace it every few months. I also use the nebulizer air to help dry the neb cups. You should not use them if they are wet. It is so hard to keep them clean and dry. Especially with one! You are not supposed to use a hair dryer (why?) or dry with a cloth, but I do blot with paper towels when I have to.

I know you hate the thought of 02 at your age! Believe me I understand. I didn't go out for a month after I began using it. I felt like everyone was looking at me when I did go out. The kids will only be worried and embarrassed if you are. I tell little kids who ask that it is no different than having to wear glasses, etc....that sometimes our body parts don't work as well as they should.

Have you been tested for reflux. It can cause your coughing to be worse.

I wish you felt better. I hate that you have to redo the PFT, but you need answers.

Take it easy this weekend!

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.

> > >> > > Joyce,> > >> > > You have right to complain when you feel awful.> > >> > > I wonder what we catch in the hospitals and rehabs. I do know> the one> > time I> > > went to rehab before coming to Fla. I became very ill. I was too> sick> > or> > > naïve to notice that they put the cannula in a plastic bag and> > reused it> > > when I came in. Got a whopper of an infection from it. No more.> I have> > > learned to speak up.> > >> > > I carry the disinfectant wipes with me anytime I leave the house.> > >> > > Hope you feel better.> > >> > > Fla.> > >> > >> > >> > > _____> > >> > > From: Breathe-Support > <mailto:Breathe-Support%40yahoogroups.com>> > > [mailto:Breathe-Support > <mailto:Breathe-Support%40yahoogroups.com> ] On Behalf Of Joyce> > > Sent: Thursday, June 28, 2007 2:21 PM> > > To: Breathe-Support > <mailto:Breathe-Support%40yahoogroups.com>> > > Subject: Sick and tired of being sick and blah> blah> > blah> > >> > >> > >> > > <http://www.smileycentral.com/?partner=ZSzeb001_ZSXXXXXX37>> Sicky Me> > here> > > to complain. Oh, I do it so well!> > >> > > After my tortorous PFT the other day, I felt so bad and started> with> > the> > > cold chills and fever. Went on to rehab yesturday, did not do so> good.> > > Started running a temp again yesturday evening...so back on the> > Levaquin.> > > Aaaargh!> > >> > > I am finding from rehab that I can not be active....walk, talk,> etc.> > on> > > pulse. Not even at 6. So we are trying to get info on the> regulator> > that> > > Beth uses. Hope they get that done soon. I have not been> able to> > get> > > out and about for a couple of months without my 02 dropping.> When I> > turn my> > > dial to continuous it puts out 2L.> > >> > > O.K. I feel better now. Everyone else have a good day!> > >> > > Hugs, Joyce D.> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > <http://smiley.smileycentral.com/download/index.jhtml?> partner=ZSzeb113_Z\> > SXXX> > > XXX37 & utm_id=7921>> > >> > > > > > > > > > > > > > > > > > > > > > Pink Joyce IPF 3/06 Pennslvania> > > > ---------------------------------> > Park yourself in front of a world of choices in alternative> vehicles.> > Visit the Yahoo! Auto Green Center.> >>

[Guest guest]

get me in sooner. She called me

back at 5:15 to say she hadn't heard back, but would call me

tomorrow to follow up.

My sister called today and I kinda broke the news to her about the

downhill trend.

That's all for now folks. Gotta think about dinner.

Thanks for post from Jane too and your email Joyce.

Love to you all, I'll update you again tomorrow and surely have more

questions.

Kerry

IPF '01 (but feeling like I'm newly diagnosed w/ this)

>

Keep up - just remember that people are depending upon you so don't dare give up ************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour

[Guest guest]

get me in sooner. She called me

back at 5:15 to say she hadn't heard back, but would call me

tomorrow to follow up.

My sister called today and I kinda broke the news to her about the

downhill trend.

That's all for now folks. Gotta think about dinner.

Thanks for post from Jane too and your email Joyce.

Love to you all, I'll update you again tomorrow and surely have more

questions.

Kerry

IPF '01 (but feeling like I'm newly diagnosed w/ this)

>

Keep up - just remember that people are depending upon you so don't dare give up ************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour

[Guest guest]

Peggy,

It means a lot to me find this post. Thank you. Today was tough.

Did FVC test 3 times (didn't even bother to ask results of that)

because then I attempted Diffusion 2 times and was in tears after

each. No luck, couldn't even come close to completing. I tried to

compose myself before I went out to my family, but just couldn't

hide the tears. My daughter said it's okay Mommy don't cry. I told

her I tried my best (what we always tell her to do so I knew her

response), she said " and that's all you can do. " She rubbed my back

and both kids had me smiling and laughing in spite of myself by the

time I had to go do the 6 minute walk. I did my normal fast pace

which had me out of breath pretty quick. I don't think I walked

more than 2 minutes and she said okay we can go back to the room

now. I glanced at the pulseox and it said 85. Doc w/ surely be

calling O2 company tomorrow (he was out of office on vacation

today). They gave me the flutter valve prescription I requested and

I was on my way. I went over to the hospital and they gave me a

super generic looking one, Joyce I protested for the Acapella, this

is all they stock. It didn't impress me at the hospital, I will try

it later before bed.

After I got home one of the nurses called me and asked if there was

anything she could do for me since was out. I discussed it

all w/ her. She did look in my file and apparently they did do a

full blood workup on me back in 2002 and the only thing even

slightly off was my SED rate (anyone clarify which one that is

for?). We talked about a few things and I told her I'd made the

appointment for the 2nd opinion and she said she would actually call

his office to see if they could get me in sooner. She called me

back at 5:15 to say she hadn't heard back, but would call me

tomorrow to follow up.

My sister called today and I kinda broke the news to her about the

downhill trend.

That's all for now folks. Gotta think about dinner.

Thanks for post from Jane too and your email Joyce.

Love to you all, I'll update you again tomorrow and surely have more

questions.

Kerry

IPF '01 (but feeling like I'm newly diagnosed w/ this)

> >

> > Missy Joyce, I too think this group is so heaven sent. I am

> thankful every

> > time I click on the board and there are my heart friends. I Thank

> God that

> > Leanne had the thought and started this group. What a jewel she

is.

> > And YOU my good friend ALWAYS say just exactly what we need. You

> just amaze

> > me the way you can research

> > all our ailments.

> > We are all Blessed.

> > Thank you.

> > Love and Prayers, Peggy 9/04 ipf Florida " Worry looks

> around, Sorry

> > looks back, Faith looks up "

> >

> > Group,

> >

> > I know I am showing favor, but I think we just have the BEST

> support group.

> > Whenever my thoughts are racing, first one way then

> another....whenever I am

> > feeling panic...whenever I am feeling alone....I come here. I

> know that you

> > guys understand exactly where I am coming from. The wonderful

> compassion

> > and spiritual comfort that you offer each other is awesome.

> >

> > Today it was Lentz' letter to Fern. Wow!!! Powerful,

> especially to

> > those of us who know where she's been. It is always Peggy who

> reminds us

> > that our sweet Father is in control....definatly not earthly

> weaklings like

> > us. It is Leanne, who is shaking in her boots right now, dealing

> with every

> > emotion known to man, who works to keep this sight running and

> offers such

> > good advice. It is sweet young Mothers like Kerry and who

> are so

> > worried about being here to raise thier babies, yet dig down

> inside to offer

> > comfort and share knowledge. It is all of us whining, ranting,

> praying and

> > hoping who take time every day to make an effort to help another

> suffering

> > soul. I am proud of us!

> >

> > Hugs, Joyce D.

> > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA

> > 2 COR. 12:10 ....when I am weak, then I am strong.

> >

>

[Guest guest]

Peggy,

It means a lot to me find this post. Thank you. Today was tough.

Did FVC test 3 times (didn't even bother to ask results of that)

because then I attempted Diffusion 2 times and was in tears after

each. No luck, couldn't even come close to completing. I tried to

compose myself before I went out to my family, but just couldn't

hide the tears. My daughter said it's okay Mommy don't cry. I told

her I tried my best (what we always tell her to do so I knew her

response), she said " and that's all you can do. " She rubbed my back

and both kids had me smiling and laughing in spite of myself by the

time I had to go do the 6 minute walk. I did my normal fast pace

which had me out of breath pretty quick. I don't think I walked

more than 2 minutes and she said okay we can go back to the room

now. I glanced at the pulseox and it said 85. Doc w/ surely be

calling O2 company tomorrow (he was out of office on vacation

today). They gave me the flutter valve prescription I requested and

I was on my way. I went over to the hospital and they gave me a

super generic looking one, Joyce I protested for the Acapella, this

is all they stock. It didn't impress me at the hospital, I will try

it later before bed.

After I got home one of the nurses called me and asked if there was

anything she could do for me since was out. I discussed it

all w/ her. She did look in my file and apparently they did do a

full blood workup on me back in 2002 and the only thing even

slightly off was my SED rate (anyone clarify which one that is

for?). We talked about a few things and I told her I'd made the

appointment for the 2nd opinion and she said she would actually call

his office to see if they could get me in sooner. She called me

back at 5:15 to say she hadn't heard back, but would call me

tomorrow to follow up.

My sister called today and I kinda broke the news to her about the

downhill trend.

That's all for now folks. Gotta think about dinner.

Thanks for post from Jane too and your email Joyce.

Love to you all, I'll update you again tomorrow and surely have more

questions.

Kerry

IPF '01 (but feeling like I'm newly diagnosed w/ this)

> >

> > Missy Joyce, I too think this group is so heaven sent. I am

> thankful every

> > time I click on the board and there are my heart friends. I Thank

> God that

> > Leanne had the thought and started this group. What a jewel she

is.

> > And YOU my good friend ALWAYS say just exactly what we need. You

> just amaze

> > me the way you can research

> > all our ailments.

> > We are all Blessed.

> > Thank you.

> > Love and Prayers, Peggy 9/04 ipf Florida " Worry looks

> around, Sorry

> > looks back, Faith looks up "

> >

> > Group,

> >

> > I know I am showing favor, but I think we just have the BEST

> support group.

> > Whenever my thoughts are racing, first one way then

> another....whenever I am

> > feeling panic...whenever I am feeling alone....I come here. I

> know that you

> > guys understand exactly where I am coming from. The wonderful

> compassion

> > and spiritual comfort that you offer each other is awesome.

> >

> > Today it was Lentz' letter to Fern. Wow!!! Powerful,

> especially to

> > those of us who know where she's been. It is always Peggy who

> reminds us

> > that our sweet Father is in control....definatly not earthly

> weaklings like

> > us. It is Leanne, who is shaking in her boots right now, dealing

> with every

> > emotion known to man, who works to keep this sight running and

> offers such

> > good advice. It is sweet young Mothers like Kerry and who

> are so

> > worried about being here to raise thier babies, yet dig down

> inside to offer

> > comfort and share knowledge. It is all of us whining, ranting,

> praying and

> > hoping who take time every day to make an effort to help another

> suffering

> > soul. I am proud of us!

> >

> > Hugs, Joyce D.

> > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA

> > 2 COR. 12:10 ....when I am weak, then I am strong.

> >

>

[Guest guest]

Kerry,

My new pulmonary doctor (In Atlanta, at Emory) described pulmonary fibrosis as a bump in the road. Sometimes the bump are really big and sometimes very small. I have had some small bumps and 3 years ago I had one really big bump. Today may have been a big bump for you. We never know when those bumps are coming. But then we get up and are able to resume our lives.

Jane IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> > >> > > Missy Joyce, I too think this group is so heaven sent. I am> > thankful every> > > time I click on the board and there are my heart friends. I Thank> > God that> > > Leanne had the thought and started this group. What a jewel she > is.> > > And YOU my good friend ALWAYS say just exactly what we need. You> > just amaze> > > me the way you can research> > > all our ailments.> > > We are all Blessed.> > > Thank you.> > > Love and Prayers, Peggy 9/04 ipf Florida "Worry looks> > around, Sorry> > > looks back, Faith looks up"> > > > > > Group, > > > > > > I know I am showing favor, but I think we just have the BEST> > support group.> > > Whenever my thoughts are racing, first one way then> > another....whenever I am> > > feeling panic...whenever I am feeling alone....I come here. I> > know that you> > > guys understand exactly where I am coming from. The wonderful> > compassion> > > and spiritual comfort that you offer each other is awesome.> > > > > > Today it was Lentz' letter to Fern. Wow!!! Powerful,> > especially to> > > those of us who know where she's been. It is always Peggy who> > reminds us> > > that our sweet Father is in control....definatly not earthly> > weaklings like> > > us. It is Leanne, who is shaking in her boots right now, dealing> > with every> > > emotion known to man, who works to keep this sight running and> > offers such> > > good advice. It is sweet young Mothers like Kerry and who> > are so> > > worried about being here to raise thier babies, yet dig down> > inside to offer> > > comfort and share knowledge. It is all of us whining, ranting,> > praying and> > > hoping who take time every day to make an effort to help another> > suffering> > > soul. I am proud of us!> > > > > > Hugs, Joyce D.> > > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA> > > 2 COR. 12:10 ....when I am weak, then I am strong.> > >> >>

[Guest guest]

Kerry,

My new pulmonary doctor (In Atlanta, at Emory) described pulmonary fibrosis as a bump in the road. Sometimes the bump are really big and sometimes very small. I have had some small bumps and 3 years ago I had one really big bump. Today may have been a big bump for you. We never know when those bumps are coming. But then we get up and are able to resume our lives.

Jane IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> > >> > > Missy Joyce, I too think this group is so heaven sent. I am> > thankful every> > > time I click on the board and there are my heart friends. I Thank> > God that> > > Leanne had the thought and started this group. What a jewel she > is.> > > And YOU my good friend ALWAYS say just exactly what we need. You> > just amaze> > > me the way you can research> > > all our ailments.> > > We are all Blessed.> > > Thank you.> > > Love and Prayers, Peggy 9/04 ipf Florida "Worry looks> > around, Sorry> > > looks back, Faith looks up"> > > > > > Group, > > > > > > I know I am showing favor, but I think we just have the BEST> > support group.> > > Whenever my thoughts are racing, first one way then> > another....whenever I am> > > feeling panic...whenever I am feeling alone....I come here. I> > know that you> > > guys understand exactly where I am coming from. The wonderful> > compassion> > > and spiritual comfort that you offer each other is awesome.> > > > > > Today it was Lentz' letter to Fern. Wow!!! Powerful,> > especially to> > > those of us who know where she's been. It is always Peggy who> > reminds us> > > that our sweet Father is in control....definatly not earthly> > weaklings like> > > us. It is Leanne, who is shaking in her boots right now, dealing> > with every> > > emotion known to man, who works to keep this sight running and> > offers such> > > good advice. It is sweet young Mothers like Kerry and who> > are so> > > worried about being here to raise thier babies, yet dig down> > inside to offer> > > comfort and share knowledge. It is all of us whining, ranting,> > praying and> > > hoping who take time every day to make an effort to help another> > suffering> > > soul. I am proud of us!> > > > > > Hugs, Joyce D.> > > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA> > > 2 COR. 12:10 ....when I am weak, then I am strong.> > >> >>

[Guest guest]

Kerry what a tough traumatic day for you and the kids. like I said wish I were there to help ya.

Be sure the O2 Co. leaves you plenty of supplies. Trust me they charge your ins. co. plenty.

We're here for you. and understand.

Love and Prayers, Peggy 9/04 ipf Florida " Worry looks around, Sorry looks back, Faith looks up "

Peggy,

It means a lot to me find this post. Thank you. Today was tough.

Did FVC test 3 times (didn't even bother to ask results of that)

because then I attempted Diffusion 2 times and was in tears after

each. No luck, couldn't even come close to completing. I tried to

compose myself before I went out to my family, but just couldn't

hide the tears. My daughter said it's okay Mommy don't cry. I told

her I tried my best (what we always tell her to do so I knew her

response), she said " and that's all you can do. " She rubbed my back

and both kids had me smiling and laughing in spite of myself by the

time I had to go do the 6 minute walk. I did my normal fast pace

which had me out of breath pretty quick. I don't think I walked

more than 2 minutes and she said okay we can go back to the room

now. I glanced at the pulseox and it said 85. Doc w/ surely be

calling O2 company tomorrow (he was out of office on vacation

today). They gave me the flutter valve prescription I requested and

I was on my way. I went over to the hospital and they gave me a

super generic looking one, Joyce I protested for the Acapella, this

is all they stock. It didn't impress me at the hospital, I will try

it later before bed.

After I got home one of the nurses called me and asked if there was

anything she could do for me since was out. I discussed it

all w/ her. She did look in my file and apparently they did do a

full blood workup on me back in 2002 and the only thing even

slightly off was my SED rate (anyone clarify which one that is

for?). We talked about a few things and I told her I'd made the

appointment for the 2nd opinion and she said she would actually call

his office to see if they could get me in sooner. She called me

back at 5:15 to say she hadn't heard back, but would call me

tomorrow to follow up.

My sister called today and I kinda broke the news to her about the

downhill trend.

That's all for now folks. Gotta think about dinner.

Thanks for post from Jane too and your email Joyce.

Love to you all, I'll update you again tomorrow and surely have more

questions.

Kerry

IPF '01 (but feeling like I'm newly diagnosed w/ this)

> >

> > Missy Joyce, I too think this group is so heaven sent. I am

> thankful every

> > time I click on the board and there are my heart friends. I Thank

> God that

> > Leanne had the thought and started this group. What a jewel she

is.

> > And YOU my good friend ALWAYS say just exactly what we need. You

> just amaze

> > me the way you can research

> > all our ailments.

> > We are all Blessed.

> > Thank you.

> > Love and Prayers, Peggy 9/04 ipf Florida " Worry looks

> around, Sorry

> > looks back, Faith looks up "

> >

> > Group,

> >

> > I know I am showing favor, but I think we just have the BEST

> support group.

> > Whenever my thoughts are racing, first one way then

> another....whenever I am

> > feeling panic...whenever I am feeling alone....I come here. I

> know that you

> > guys understand exactly where I am coming from. The wonderful

> compassion

> > and spiritual comfort that you offer each other is awesome.

> >

> > Today it was Lentz' letter to Fern. Wow!!! Powerful,

> especially to

> > those of us who know where she's been. It is always Peggy who

> reminds us

> > that our sweet Father is in control....definatly not earthly

> weaklings like

> > us. It is Leanne, who is shaking in her boots right now, dealing

> with every

> > emotion known to man, who works to keep this sight running and

> offers such

> > good advice. It is sweet young Mothers like Kerry and who

> are so

> > worried about being here to raise thier babies, yet dig down

> inside to offer

> > comfort and share knowledge. It is all of us whining, ranting,

> praying and

> > hoping who take time every day to make an effort to help another

> suffering

> > soul. I am proud of us!

> >

> > Hugs, Joyce D.

> > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA

> > 2 COR. 12:10 ....when I am weak, then I am strong.

> >

>

[Guest guest]

Kerry what a tough traumatic day for you and the kids. like I said wish I were there to help ya.

Be sure the O2 Co. leaves you plenty of supplies. Trust me they charge your ins. co. plenty.

We're here for you. and understand.

Love and Prayers, Peggy 9/04 ipf Florida " Worry looks around, Sorry looks back, Faith looks up "

Peggy,

It means a lot to me find this post. Thank you. Today was tough.

Did FVC test 3 times (didn't even bother to ask results of that)

because then I attempted Diffusion 2 times and was in tears after

each. No luck, couldn't even come close to completing. I tried to

compose myself before I went out to my family, but just couldn't

hide the tears. My daughter said it's okay Mommy don't cry. I told

her I tried my best (what we always tell her to do so I knew her

response), she said " and that's all you can do. " She rubbed my back

and both kids had me smiling and laughing in spite of myself by the

time I had to go do the 6 minute walk. I did my normal fast pace

which had me out of breath pretty quick. I don't think I walked

more than 2 minutes and she said okay we can go back to the room

now. I glanced at the pulseox and it said 85. Doc w/ surely be

calling O2 company tomorrow (he was out of office on vacation

today). They gave me the flutter valve prescription I requested and

I was on my way. I went over to the hospital and they gave me a

super generic looking one, Joyce I protested for the Acapella, this

is all they stock. It didn't impress me at the hospital, I will try

it later before bed.

After I got home one of the nurses called me and asked if there was

anything she could do for me since was out. I discussed it

all w/ her. She did look in my file and apparently they did do a

full blood workup on me back in 2002 and the only thing even

slightly off was my SED rate (anyone clarify which one that is

for?). We talked about a few things and I told her I'd made the

appointment for the 2nd opinion and she said she would actually call

his office to see if they could get me in sooner. She called me

back at 5:15 to say she hadn't heard back, but would call me

tomorrow to follow up.

My sister called today and I kinda broke the news to her about the

downhill trend.

That's all for now folks. Gotta think about dinner.

Thanks for post from Jane too and your email Joyce.

Love to you all, I'll update you again tomorrow and surely have more

questions.

Kerry

IPF '01 (but feeling like I'm newly diagnosed w/ this)

> >

> > Missy Joyce, I too think this group is so heaven sent. I am

> thankful every

> > time I click on the board and there are my heart friends. I Thank

> God that

> > Leanne had the thought and started this group. What a jewel she

is.

> > And YOU my good friend ALWAYS say just exactly what we need. You

> just amaze

> > me the way you can research

> > all our ailments.

> > We are all Blessed.

> > Thank you.

> > Love and Prayers, Peggy 9/04 ipf Florida " Worry looks

> around, Sorry

> > looks back, Faith looks up "

> >

> > Group,

> >

> > I know I am showing favor, but I think we just have the BEST

> support group.

> > Whenever my thoughts are racing, first one way then

> another....whenever I am

> > feeling panic...whenever I am feeling alone....I come here. I

> know that you

> > guys understand exactly where I am coming from. The wonderful

> compassion

> > and spiritual comfort that you offer each other is awesome.

> >

> > Today it was Lentz' letter to Fern. Wow!!! Powerful,

> especially to

> > those of us who know where she's been. It is always Peggy who

> reminds us

> > that our sweet Father is in control....definatly not earthly

> weaklings like

> > us. It is Leanne, who is shaking in her boots right now, dealing

> with every

> > emotion known to man, who works to keep this sight running and

> offers such

> > good advice. It is sweet young Mothers like Kerry and who

> are so

> > worried about being here to raise thier babies, yet dig down

> inside to offer

> > comfort and share knowledge. It is all of us whining, ranting,

> praying and

> > hoping who take time every day to make an effort to help another

> suffering

> > soul. I am proud of us!

> >

> > Hugs, Joyce D.

> > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA

> > 2 COR. 12:10 ....when I am weak, then I am strong.

> >

>

[Guest guest]

Kerry what a tough traumatic day for you and the kids. like I said wish I were there to help ya.

Be sure the O2 Co. leaves you plenty of supplies. Trust me they charge your ins. co. plenty.

We're here for you. and understand.

Love and Prayers, Peggy 9/04 ipf Florida " Worry looks around, Sorry looks back, Faith looks up "

Peggy,

It means a lot to me find this post. Thank you. Today was tough.

Did FVC test 3 times (didn't even bother to ask results of that)

because then I attempted Diffusion 2 times and was in tears after

each. No luck, couldn't even come close to completing. I tried to

compose myself before I went out to my family, but just couldn't

hide the tears. My daughter said it's okay Mommy don't cry. I told

her I tried my best (what we always tell her to do so I knew her

response), she said " and that's all you can do. " She rubbed my back

and both kids had me smiling and laughing in spite of myself by the

time I had to go do the 6 minute walk. I did my normal fast pace

which had me out of breath pretty quick. I don't think I walked

more than 2 minutes and she said okay we can go back to the room

now. I glanced at the pulseox and it said 85. Doc w/ surely be

calling O2 company tomorrow (he was out of office on vacation

today). They gave me the flutter valve prescription I requested and

I was on my way. I went over to the hospital and they gave me a

super generic looking one, Joyce I protested for the Acapella, this

is all they stock. It didn't impress me at the hospital, I will try

it later before bed.

After I got home one of the nurses called me and asked if there was

anything she could do for me since was out. I discussed it

all w/ her. She did look in my file and apparently they did do a

full blood workup on me back in 2002 and the only thing even

slightly off was my SED rate (anyone clarify which one that is

for?). We talked about a few things and I told her I'd made the

appointment for the 2nd opinion and she said she would actually call

his office to see if they could get me in sooner. She called me

back at 5:15 to say she hadn't heard back, but would call me

tomorrow to follow up.

My sister called today and I kinda broke the news to her about the

downhill trend.

That's all for now folks. Gotta think about dinner.

Thanks for post from Jane too and your email Joyce.

Love to you all, I'll update you again tomorrow and surely have more

questions.

Kerry

IPF '01 (but feeling like I'm newly diagnosed w/ this)

> >

> > Missy Joyce, I too think this group is so heaven sent. I am

> thankful every

> > time I click on the board and there are my heart friends. I Thank

> God that

> > Leanne had the thought and started this group. What a jewel she

is.

> > And YOU my good friend ALWAYS say just exactly what we need. You

> just amaze

> > me the way you can research

> > all our ailments.

> > We are all Blessed.

> > Thank you.

> > Love and Prayers, Peggy 9/04 ipf Florida " Worry looks

> around, Sorry

> > looks back, Faith looks up "

> >

> > Group,

> >

> > I know I am showing favor, but I think we just have the BEST

> support group.

> > Whenever my thoughts are racing, first one way then

> another....whenever I am

> > feeling panic...whenever I am feeling alone....I come here. I

> know that you

> > guys understand exactly where I am coming from. The wonderful

> compassion

> > and spiritual comfort that you offer each other is awesome.

> >

> > Today it was Lentz' letter to Fern. Wow!!! Powerful,

> especially to

> > those of us who know where she's been. It is always Peggy who

> reminds us

> > that our sweet Father is in control....definatly not earthly

> weaklings like

> > us. It is Leanne, who is shaking in her boots right now, dealing

> with every

> > emotion known to man, who works to keep this sight running and

> offers such

> > good advice. It is sweet young Mothers like Kerry and who

> are so

> > worried about being here to raise thier babies, yet dig down

> inside to offer

> > comfort and share knowledge. It is all of us whining, ranting,

> praying and

> > hoping who take time every day to make an effort to help another

> suffering

> > soul. I am proud of us!

> >

> > Hugs, Joyce D.

> > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA

> > 2 COR. 12:10 ....when I am weak, then I am strong.

> >

>

[Guest guest]

Kerry,

I'm sorry you had such a difficult day today. The PFT is an exhausting nightmare. The thing to remember if you can is that at this point the O2 is your best friend. The pulmonologist who runs the pulmonary rehab program at my rehab hospital reminded us at every opportunity that people who need O2 and use it, live longer than folks who need it and don't/won't use it.

You'll feel better in the long run though it will take some getting used to. We all love you and are here for you no matter what. Wish I was there to bring you some supper and a huge hug!!

Beth in NY Fibrotic NSIP 06/06

"At the evening of life we shall be judged on our love."

St of the Cross

Re: Kerry

Peggy,It means a lot to me find this post. Thank you. Today was tough. Did FVC test 3 times (didn't even bother to ask results of that) because then I attempted Diffusion 2 times and was in tears after each. No luck, couldn't even come close to completing. I tried to compose myself before I went out to my family, but just couldn't hide the tears. My daughter said it's okay Mommy don't cry. I told her I tried my best (what we always tell her to do so I knew her response), she said "and that's all you can do." She rubbed my back and both kids had me smiling and laughing in spite of myself by the time I had to go do the 6 minute walk. I did my normal fast pace which had me out of breath pretty quick. I don't think I walked more than 2 minutes and she said okay we can go back to the room now. I glanced at the pulseox and it said 85. Doc w/ surely be calling O2 company tomorrow (he was out of

office on vacation today). They gave me the flutter valve prescription I requested and I was on my way. I went over to the hospital and they gave me a super generic looking one, Joyce I protested for the Acapella, this is all they stock. It didn't impress me at the hospital, I will try it later before bed. After I got home one of the nurses called me and asked if there was anything she could do for me since was out. I discussed it all w/ her. She did look in my file and apparently they did do a full blood workup on me back in 2002 and the only thing even slightly off was my SED rate (anyone clarify which one that is for?). We talked about a few things and I told her I'd made the appointment for the 2nd opinion and she said she would actually call his office to see if they could get me in sooner. She called me back at 5:15 to say she hadn't heard back, but would call me tomorrow to

follow up. My sister called today and I kinda broke the news to her about the downhill trend. That's all for now folks. Gotta think about dinner. Thanks for post from Jane too and your email Joyce. Love to you all, I'll update you again tomorrow and surely have more questions.KerryIPF '01 (but feeling like I'm newly diagnosed w/ this) > >> > Missy Joyce, I too think this group is so heaven sent. I am> thankful every> > time I click on the board and there are my heart friends. I Thank> God that> > Leanne had the thought and started this group. What a jewel she is.> > And YOU my good friend ALWAYS say just exactly what we need. You> just amaze> > me the way you can research> > all our ailments.> > We are all Blessed.> > Thank you.> > Love and Prayers, Peggy 9/04 ipf Florida "Worry looks> around, Sorry> > looks back, Faith looks up"> > > > Group,

> > > > I know I am showing favor, but I think we just have the BEST> support group.> > Whenever my thoughts are racing, first one way then> another....whenever I am> > feeling panic...whenever I am feeling alone....I come here. I> know that you> > guys understand exactly where I am coming from. The wonderful> compassion> > and spiritual comfort that you offer each other is awesome.> > > > Today it was Lentz' letter to Fern. Wow!!! Powerful,> especially to> > those of us who know where she's been. It is always Peggy who> reminds us> > that our sweet Father is in control....definatl y not earthly> weaklings like> > us. It is Leanne, who is shaking in her boots right now, dealing> with every> > emotion known to man, who works to keep this sight running and> offers

such> > good advice. It is sweet young Mothers like Kerry and who> are so> > worried about being here to raise thier babies, yet dig down> inside to offer> > comfort and share knowledge. It is all of us whining, ranting,> praying and> > hoping who take time every day to make an effort to help another> suffering> > soul. I am proud of us!> > > > Hugs, Joyce D.> > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA> > 2 COR. 12:10 ....when I am weak, then I am strong.> >>

[Guest guest]

Kerry,

I'm sorry you had such a difficult day today. The PFT is an exhausting nightmare. The thing to remember if you can is that at this point the O2 is your best friend. The pulmonologist who runs the pulmonary rehab program at my rehab hospital reminded us at every opportunity that people who need O2 and use it, live longer than folks who need it and don't/won't use it.

You'll feel better in the long run though it will take some getting used to. We all love you and are here for you no matter what. Wish I was there to bring you some supper and a huge hug!!

Beth in NY Fibrotic NSIP 06/06

"At the evening of life we shall be judged on our love."

St of the Cross

Re: Kerry

Peggy,It means a lot to me find this post. Thank you. Today was tough. Did FVC test 3 times (didn't even bother to ask results of that) because then I attempted Diffusion 2 times and was in tears after each. No luck, couldn't even come close to completing. I tried to compose myself before I went out to my family, but just couldn't hide the tears. My daughter said it's okay Mommy don't cry. I told her I tried my best (what we always tell her to do so I knew her response), she said "and that's all you can do." She rubbed my back and both kids had me smiling and laughing in spite of myself by the time I had to go do the 6 minute walk. I did my normal fast pace which had me out of breath pretty quick. I don't think I walked more than 2 minutes and she said okay we can go back to the room now. I glanced at the pulseox and it said 85. Doc w/ surely be calling O2 company tomorrow (he was out of

office on vacation today). They gave me the flutter valve prescription I requested and I was on my way. I went over to the hospital and they gave me a super generic looking one, Joyce I protested for the Acapella, this is all they stock. It didn't impress me at the hospital, I will try it later before bed. After I got home one of the nurses called me and asked if there was anything she could do for me since was out. I discussed it all w/ her. She did look in my file and apparently they did do a full blood workup on me back in 2002 and the only thing even slightly off was my SED rate (anyone clarify which one that is for?). We talked about a few things and I told her I'd made the appointment for the 2nd opinion and she said she would actually call his office to see if they could get me in sooner. She called me back at 5:15 to say she hadn't heard back, but would call me tomorrow to

follow up. My sister called today and I kinda broke the news to her about the downhill trend. That's all for now folks. Gotta think about dinner. Thanks for post from Jane too and your email Joyce. Love to you all, I'll update you again tomorrow and surely have more questions.KerryIPF '01 (but feeling like I'm newly diagnosed w/ this) > >> > Missy Joyce, I too think this group is so heaven sent. I am> thankful every> > time I click on the board and there are my heart friends. I Thank> God that> > Leanne had the thought and started this group. What a jewel she is.> > And YOU my good friend ALWAYS say just exactly what we need. You> just amaze> > me the way you can research> > all our ailments.> > We are all Blessed.> > Thank you.> > Love and Prayers, Peggy 9/04 ipf Florida "Worry looks> around, Sorry> > looks back, Faith looks up"> > > > Group,

> > > > I know I am showing favor, but I think we just have the BEST> support group.> > Whenever my thoughts are racing, first one way then> another....whenever I am> > feeling panic...whenever I am feeling alone....I come here. I> know that you> > guys understand exactly where I am coming from. The wonderful> compassion> > and spiritual comfort that you offer each other is awesome.> > > > Today it was Lentz' letter to Fern. Wow!!! Powerful,> especially to> > those of us who know where she's been. It is always Peggy who> reminds us> > that our sweet Father is in control....definatl y not earthly> weaklings like> > us. It is Leanne, who is shaking in her boots right now, dealing> with every> > emotion known to man, who works to keep this sight running and> offers

such> > good advice. It is sweet young Mothers like Kerry and who> are so> > worried about being here to raise thier babies, yet dig down> inside to offer> > comfort and share knowledge. It is all of us whining, ranting,> praying and> > hoping who take time every day to make an effort to help another> suffering> > soul. I am proud of us!> > > > Hugs, Joyce D.> > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA> > 2 COR. 12:10 ....when I am weak, then I am strong.> >>

[Guest guest]

Kerry,

I'm sorry you had such a difficult day today. The PFT is an exhausting nightmare. The thing to remember if you can is that at this point the O2 is your best friend. The pulmonologist who runs the pulmonary rehab program at my rehab hospital reminded us at every opportunity that people who need O2 and use it, live longer than folks who need it and don't/won't use it.

You'll feel better in the long run though it will take some getting used to. We all love you and are here for you no matter what. Wish I was there to bring you some supper and a huge hug!!

Beth in NY Fibrotic NSIP 06/06

"At the evening of life we shall be judged on our love."

St of the Cross

Re: Kerry

Peggy,It means a lot to me find this post. Thank you. Today was tough. Did FVC test 3 times (didn't even bother to ask results of that) because then I attempted Diffusion 2 times and was in tears after each. No luck, couldn't even come close to completing. I tried to compose myself before I went out to my family, but just couldn't hide the tears. My daughter said it's okay Mommy don't cry. I told her I tried my best (what we always tell her to do so I knew her response), she said "and that's all you can do." She rubbed my back and both kids had me smiling and laughing in spite of myself by the time I had to go do the 6 minute walk. I did my normal fast pace which had me out of breath pretty quick. I don't think I walked more than 2 minutes and she said okay we can go back to the room now. I glanced at the pulseox and it said 85. Doc w/ surely be calling O2 company tomorrow (he was out of

office on vacation today). They gave me the flutter valve prescription I requested and I was on my way. I went over to the hospital and they gave me a super generic looking one, Joyce I protested for the Acapella, this is all they stock. It didn't impress me at the hospital, I will try it later before bed. After I got home one of the nurses called me and asked if there was anything she could do for me since was out. I discussed it all w/ her. She did look in my file and apparently they did do a full blood workup on me back in 2002 and the only thing even slightly off was my SED rate (anyone clarify which one that is for?). We talked about a few things and I told her I'd made the appointment for the 2nd opinion and she said she would actually call his office to see if they could get me in sooner. She called me back at 5:15 to say she hadn't heard back, but would call me tomorrow to

follow up. My sister called today and I kinda broke the news to her about the downhill trend. That's all for now folks. Gotta think about dinner. Thanks for post from Jane too and your email Joyce. Love to you all, I'll update you again tomorrow and surely have more questions.KerryIPF '01 (but feeling like I'm newly diagnosed w/ this) > >> > Missy Joyce, I too think this group is so heaven sent. I am> thankful every> > time I click on the board and there are my heart friends. I Thank> God that> > Leanne had the thought and started this group. What a jewel she is.> > And YOU my good friend ALWAYS say just exactly what we need. You> just amaze> > me the way you can research> > all our ailments.> > We are all Blessed.> > Thank you.> > Love and Prayers, Peggy 9/04 ipf Florida "Worry looks> around, Sorry> > looks back, Faith looks up"> > > > Group,

> > > > I know I am showing favor, but I think we just have the BEST> support group.> > Whenever my thoughts are racing, first one way then> another....whenever I am> > feeling panic...whenever I am feeling alone....I come here. I> know that you> > guys understand exactly where I am coming from. The wonderful> compassion> > and spiritual comfort that you offer each other is awesome.> > > > Today it was Lentz' letter to Fern. Wow!!! Powerful,> especially to> > those of us who know where she's been. It is always Peggy who> reminds us> > that our sweet Father is in control....definatl y not earthly> weaklings like> > us. It is Leanne, who is shaking in her boots right now, dealing> with every> > emotion known to man, who works to keep this sight running and> offers

such> > good advice. It is sweet young Mothers like Kerry and who> are so> > worried about being here to raise thier babies, yet dig down> inside to offer> > comfort and share knowledge. It is all of us whining, ranting,> praying and> > hoping who take time every day to make an effort to help another> suffering> > soul. I am proud of us!> > > > Hugs, Joyce D.> > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA> > 2 COR. 12:10 ....when I am weak, then I am strong.> >>

[Guest guest]

DITTO LeannePeggy wrote: , You make me so proud. I love you.Love and Prayers, Peggy 9/04 ipf Florida "Worry looks around, Sorry looks back, Faith looks up" hi kerry,i'm not sure if this is the right thing for me to say but i am going to say it anyhow.i personally know how disheartening the words oxygen can sound and the initial sadness that comes with

the words. now that i have had my oxygen for quite some time, i try to express to other new oxygen users that this is a step up not a step down. that's my firm belief.look at all the things you are doing now without the oxygen. think of how much more you may be able to do with it. girl i slap that tank on my back and that hose up my nose and trek my little way all through the gym that i go to. my husband has been down because he recently had hernia surgery. i turn my concentrator up as high as it will go and mow the lawn. (now grant it, that takes me 10 times longer than it would for chuck to do it but i get it done eventually)this is a new beginning for you, not another method of the disease wearing you down. wear that hose with pride girl and show the world you can keep up.love ya!! LCH 10-05

Park yourself in front of a world of choices in alternative vehicles.Visit the Yahoo! Auto Green Center.

[Guest guest]

DITTO LeannePeggy wrote: , You make me so proud. I love you.Love and Prayers, Peggy 9/04 ipf Florida "Worry looks around, Sorry looks back, Faith looks up" hi kerry,i'm not sure if this is the right thing for me to say but i am going to say it anyhow.i personally know how disheartening the words oxygen can sound and the initial sadness that comes with

the words. now that i have had my oxygen for quite some time, i try to express to other new oxygen users that this is a step up not a step down. that's my firm belief.look at all the things you are doing now without the oxygen. think of how much more you may be able to do with it. girl i slap that tank on my back and that hose up my nose and trek my little way all through the gym that i go to. my husband has been down because he recently had hernia surgery. i turn my concentrator up as high as it will go and mow the lawn. (now grant it, that takes me 10 times longer than it would for chuck to do it but i get it done eventually)this is a new beginning for you, not another method of the disease wearing you down. wear that hose with pride girl and show the world you can keep up.love ya!! LCH 10-05

Park yourself in front of a world of choices in alternative vehicles.Visit the Yahoo! Auto Green Center.

[Guest guest]

DITTO LeannePeggy wrote: , You make me so proud. I love you.Love and Prayers, Peggy 9/04 ipf Florida "Worry looks around, Sorry looks back, Faith looks up" hi kerry,i'm not sure if this is the right thing for me to say but i am going to say it anyhow.i personally know how disheartening the words oxygen can sound and the initial sadness that comes with

the words. now that i have had my oxygen for quite some time, i try to express to other new oxygen users that this is a step up not a step down. that's my firm belief.look at all the things you are doing now without the oxygen. think of how much more you may be able to do with it. girl i slap that tank on my back and that hose up my nose and trek my little way all through the gym that i go to. my husband has been down because he recently had hernia surgery. i turn my concentrator up as high as it will go and mow the lawn. (now grant it, that takes me 10 times longer than it would for chuck to do it but i get it done eventually)this is a new beginning for you, not another method of the disease wearing you down. wear that hose with pride girl and show the world you can keep up.love ya!! LCH 10-05

Park yourself in front of a world of choices in alternative vehicles.Visit the Yahoo! Auto Green Center.

[Guest guest]

Kerry, You are really going through all the rot this week. I only want to give you food for thought.

wait to buy your concentrator until you know for sure how many leaders you'll be on. The Airsep only goes to 3L and as active as you are I don't feel it would work to long for you. Talk to the respiratory therapist from your O2 co. they can help you. But your Dr will tell you how much to use for resting vs. activity.

Sure wish I could use one of those cuties.

You'll know better after you use O2 for a week or so.

I am proud of you. What a sweeties your children are. Lucky babies to have such a good Mom.

Love and Prayers, Peggy 9/04 ipf Florida " Worry looks around, Sorry looks back, Faith looks up "

Here's my update for today...

Used the flutter valve last night and since I felt it wasn't all

that impressive I may have overdone it... wow, I got to coughing!

It worked! I got stuff up, but don't wish to have it be so violent

an experience. I used it again this afternoon when I got home from

my morning errands (yoga and core classes at the Y and getting oil

changed in my hubby's car at the dealership) as I felt a little

cough/irritation. It's ridiculously hot here, like 100 (it was even

hot before 9am when we got to the Y) and humid as all get out (no

clue of what it is w/ the heat index) so no suprise that I felt like

coughing when I got home. I sent the kids downstairs to their new

play area (yeah, I love that) and used the flutter valve (more

cautiously than last night) and it worked again. I'm getting stuff

up. I'm excited about this because I feel like I might just be able

to be more in control of the stuff and the cough (instead of it

controlling me). I'm also trying to be a little positive about the

oxygen (again helping ease another reason for cough w/ the shortness

of breath, etc.) and yes, I'm trying to think of the things

I'll be able to do instead of thinking about the hassle, the leash

the annoyance of the nose hose.

I've been researching oxygen and would love feedback from y'all.

After talking to my sister yesterday she sent me a good article

(from the Pulmonary Paper, I know it's been referenced in past

posts) and the author recommended the Helios for being on the go.

After some research I really, really don't think I want Liquid or

Compressed O2. Considering I'm talking 2 liters, I think I like the

small AC/DC POCS (Portable Oxygen Converters). I've found Inogen

One (10 lbs.), Respironics Ever Go (10 lbs.), Airsep Lifestyle (10

lbs. what Judy's using in HI now) and finally the Airsep Freestyle

(5 lbs). So, the winner is this 5 lb. one. I would love any and

all feedback on these. I'm hoping that I can carry this around and

be as mobile as I need to be and use it in the car, walking around,

whatever! I have no idea what my insurance will cover, but I will

not compromise based on $. I need my life to be as active as I can

be and the o2 to be a help, not a hindrance. If I need to cash out

investments to buy myself one I will.

Next update is my pulmo's office called me back. They said they

might be able to get me in for my 2nd opinion next week, but this

call was a little scary. She said the new docs office was checking

to see if my insurance covered transplants at Jewish Hospital

(Louisville's transplant hospital) and she went on and on about

transplant this and transplant that. I said well I know this doctor

takes my insurance I checked that before making the appointment, but

she said but they may not cover transplant at this facility (I guess

meaning I'd have to go to another transplant center... love

insurance companies don't you). I guess the only way to hurry me in

is if I need a transplant so whatever, if it gets me in sooner I

guess that's fine. However, I did say aren't we jumping the gun a

bit I'm going for a second opinion. I want this doc to evaluate me

w/ a fresh look, I didn't want to go in saying I'm here for a

transplant. So anyway, we'll see.

Just got another call back that they called in the o2 order so when

the o2 company calls we'll see what they have and what they say my

insurance will cover.

I think that's all so far today. Now for some replies...

, thank you for the info on the SED.

, I've been hoping you would chime in because I feel we have so

much in common that I really needed to hear from you. Thank you!

Sorry about your mom's place and her belongings. Glad you got

things settled. How are you're treatments going in the middle of

this crazy summer of yours?

Again, thank's for all the support and encouraging words and just

hearing me, , , Peggy, Joyce, Leanne, Jane, May, MB,

Z. and Diane .

Jane, also kudos for you for your message to the congressman and for

going there for all of us. You are awesome.

, I've been wondering if your mom had gotten out of the

hospital... thanks for the update, I'm glad she's feeling better.

Judy, my gosh that breakfast sounded good. I'm hungry now and know

that nothing is gonna satisfy it after reading about your meal. So

glad you are taking it all in. Congrats on the call about getting

listed too. I don't remember when you head home, keep the updates

coming even though they are making us jealous.

Kerry

IPF '01

S. IN (where it's HOT!!!)

>

> hi kerry,

>

> i'm not sure if this is the right thing for me to say but i am

going

> to say it anyhow.

>

> i personally know how disheartening the words oxygen can sound and

> the initial sadness that comes with the words. now that i have had

my

> oxygen for quite some time, i try to express to other new oxygen

> users that this is a step up not a step down. that's my firm

belief.

>

> look at all the things you are doing now without the oxygen. think

of

> how much more you may be able to do with it.

>

> girl i slap that tank on my back and that hose up my nose and trek

my

> little way all through the gym that i go to. my husband has been

down

> because he recently had hernia surgery. i turn my concentrator up

as

> high as it will go and mow the lawn. (now grant it, that takes me

10

> times longer than it would for chuck to do it but i get it done

> eventually)

>

> this is a new beginning for you, not another method of the disease

> wearing you down. wear that hose with pride girl and show the

world

> you can keep up.

>

> love ya!!

>

> LCH 10-05

>

[Guest guest]

Kerry,

My only suggestion re: the oxygen would be to test a portable concentrator for a few days before deciding that that's what you want to use full time. They vary from 3 to 5 liters on a pulse delivery system. I LOVE the idea of one however it's not a system I can use when I'm active. I don't do well on a pulse delivery but that's just me, other folks do fine with them. I tested an Airsep Lifestyle one on trip I took to see my son and it ended up being something that I only used in the car on that trip.

You may very well find it works well for you when you're out and about. At home I use a regular concentrator of course and I also have a large M tank in my bedroom in case of a power outage it would keep me supplied for a good 8 hours or so.

Have a good long conversation with your O2 providers respiratory therapist, ask lots of questions and keep reminding her how active you wish to continue to be. They are accustomed to dealing with patients significantly older than you are and much less active. Make sure they know you are concerned with practicality and mobility.

We're with ya!!

Beth in NY Fibrotic NSIP 06/06

"At the evening of life we shall be judged on our love."

St of the Cross

Re: kerry

Here's my update for today...Used the flutter valve last night and since I felt it wasn't all that impressive I may have overdone it... wow, I got to coughing! It worked! I got stuff up, but don't wish to have it be so violent an experience. I used it again this afternoon when I got home from my morning errands (yoga and core classes at the Y and getting oil changed in my hubby's car at the dealership) as I felt a little cough/irritation. It's ridiculously hot here, like 100 (it was even hot before 9am when we got to the Y) and humid as all get out (no clue of what it is w/ the heat index) so no suprise that I felt like coughing when I got home. I sent the kids downstairs to their new play area (yeah, I love that) and used the flutter valve (more cautiously than last night) and it worked again. I'm getting stuff up. I'm excited about this because I feel like I might just be able to be more in

control of the stuff and the cough (instead of it controlling me). I'm also trying to be a little positive about the oxygen (again helping ease another reason for cough w/ the shortness of breath, etc.) and yes, I'm trying to think of the things I'll be able to do instead of thinking about the hassle, the leash the annoyance of the nose hose.I've been researching oxygen and would love feedback from y'all. After talking to my sister yesterday she sent me a good article (from the Pulmonary Paper, I know it's been referenced in past posts) and the author recommended the Helios for being on the go. After some research I really, really don't think I want Liquid or Compressed O2. Considering I'm talking 2 liters, I think I like the small AC/DC POCS (Portable Oxygen Converters). I've found Inogen One (10 lbs.), Respironics Ever Go (10 lbs.), Airsep Lifestyle (10 lbs. what Judy's using in HI now)

and finally the Airsep Freestyle (5 lbs). So, the winner is this 5 lb. one. I would love any and all feedback on these. I'm hoping that I can carry this around and be as mobile as I need to be and use it in the car, walking around, whatever! I have no idea what my insurance will cover, but I will not compromise based on $. I need my life to be as active as I can be and the o2 to be a help, not a hindrance. If I need to cash out investments to buy myself one I will.Next update is my pulmo's office called me back. They said they might be able to get me in for my 2nd opinion next week, but this call was a little scary. She said the new docs office was checking to see if my insurance covered transplants at Jewish Hospital (Louisville' s transplant hospital) and she went on and on about transplant this and transplant that. I said well I know this doctor takes my insurance I checked that before

making the appointment, but she said but they may not cover transplant at this facility (I guess meaning I'd have to go to another transplant center... love insurance companies don't you). I guess the only way to hurry me in is if I need a transplant so whatever, if it gets me in sooner I guess that's fine. However, I did say aren't we jumping the gun a bit I'm going for a second opinion. I want this doc to evaluate me w/ a fresh look, I didn't want to go in saying I'm here for a transplant. So anyway, we'll see.Just got another call back that they called in the o2 order so when the o2 company calls we'll see what they have and what they say my insurance will cover.I think that's all so far today. Now for some replies..., thank you for the info on the SED. , I've been hoping you would chime in because I feel we have so much in common that I really needed to hear from

you. Thank you! Sorry about your mom's place and her belongings. Glad you got things settled. How are you're treatments going in the middle of this crazy summer of yours?Again, thank's for all the support and encouraging words and just hearing me, , , Peggy, Joyce, Leanne, Jane, May, MB, Z. and Diane .Jane, also kudos for you for your message to the congressman and for going there for all of us. You are awesome., I've been wondering if your mom had gotten out of the hospital... thanks for the update, I'm glad she's feeling better.Judy, my gosh that breakfast sounded good. I'm hungry now and know that nothing is gonna satisfy it after reading about your meal. So glad you are taking it all in. Congrats on the call about getting listed too. I don't remember when you head home, keep the updates coming even though they are making us jealous.

KerryIPF '01S. IN (where it's HOT!!!)>> hi kerry,> > i'm not sure if this is the right thing for me to say but i am going > to say it anyhow.> > i personally know how disheartening the words oxygen can sound and > the initial sadness that comes with the words. now that i have had my > oxygen for quite some time, i try to express to other new oxygen > users that this is a step up not a step down. that's my firm belief.> > look at all the things you are doing now without the oxygen. think of > how much more you may be able to do with it. > > girl i slap that tank on my back and that hose up my nose and trek my > little way all through the

gym that i go to. my husband has been down > because he recently had hernia surgery. i turn my concentrator up as > high as it will go and mow the lawn. (now grant it, that takes me 10 > times longer than it would for chuck to do it but i get it done > eventually)> > this is a new beginning for you, not another method of the disease > wearing you down. wear that hose with pride girl and show the world > you can keep up.> > love ya!!> > LCH 10-05>

[Guest guest]

Kerry,

I remember the day I was told by the doctor that I had to have oxygen. The nurse checked my sats and the number was 82. They brought the oxygen immediately. I sat in her office, by myself, and sobbed. I just did not want it. The nurses kept coming in to see if I was ok. My docotr said that she was going to order it to be delivered at home. It was up to me if I used it but she would be negligent if she didnt order it. I cried all the way home and when it was delivered, I wouldnt even look at it. But the next morning, when I was having so much difficulty getting dressed because I could not breath right, I decided to just try it. I felt better right away. I was on 2 liters then..now on 8 to 10. That was one year ago exactly today. I am still self consciencious about it. I try to go without it sometimes, but find I just cant do it. My family is used to me with oxygen now and I even allowed a picture of me with the hose in my nose. I will never like it but have accepted that I will have to have it. It is not an easy transition but in time, you will probably be glad for it. Even though I hate it...I love it too. It keeps me breathing and living. I wish you courage and resolve in this matter. I will pray for you.

L.

IPF 01 HP 06

Re: Kerry

Peggy,It means a lot to me find this post. Thank you. Today was tough. Did FVC test 3 times (didn't even bother to ask results of that) because then I attempted Diffusion 2 times and was in tears after each. No luck, couldn't even come close to completing. I tried to compose myself before I went out to my family, but just couldn't hide the tears. My daughter said it's okay Mommy don't cry. I told her I tried my best (what we always tell her to do so I knew her response), she said "and that's all you can do." She rubbed my back and both kids had me smiling and laughing in spite of myself by the time I had to go do the 6 minute walk. I did my normal fast pace which had me out of breath pretty quick. I don't think I walked more than 2 minutes and she said okay we can go back to the room now. I glanced at the pulseox and it said 85. Doc w/ surely be calling O2 company tomorrow (he was out of office on vacation today). They gave me the flutter valve prescription I requested and I was on my way. I went over to the hospital and they gave me a super generic looking one, Joyce I protested for the Acapella, this is all they stock. It didn't impress me at the hospital, I will try it later before bed. After I got home one of the nurses called me and asked if there was anything she could do for me since was out. I discussed it all w/ her. She did look in my file and apparently they did do a full blood workup on me back in 2002 and the only thing even slightly off was my SED rate (anyone clarify which one that is for?). We talked about a few things and I told her I'd made the appointment for the 2nd opinion and she said she would actually call his office to see if they could get me in sooner. She called me back at 5:15 to say she hadn't heard back, but would call me tomorrow to follow up. My sister called today and I kinda broke the news to her about the downhill trend. That's all for now folks. Gotta think about dinner. Thanks for post from Jane too and your email Joyce. Love to you all, I'll update you again tomorrow and surely have more questions.KerryIPF '01 (but feeling like I'm newly diagnosed w/ this) > >> > Missy Joyce, I too think this group is so heaven sent. I am> thankful every> > time I click on the board and there are my heart friends. I Thank> God that> > Leanne had the thought and started this group. What a jewel she is.> > And YOU my good friend ALWAYS say just exactly what we need. You> just amaze> > me the way you can research> > all our ailments.> > We are all Blessed.> > Thank you.> > Love and Prayers, Peggy 9/04 ipf Florida "Worry looks> around, Sorry> > looks back, Faith looks up"> > > > Group, > > > > I know I am showing favor, but I think we just have the BEST> support group.> > Whenever my thoughts are racing, first one way then> another....whenever I am> > feeling panic...whenever I am feeling alone....I come here. I> know that you> > guys understand exactly where I am coming from. The wonderful> compassion> > and spiritual comfort that you offer each other is awesome.> > > > Today it was Lentz' letter to Fern. Wow!!! Powerful,> especially to> > those of us who know where she's been. It is always Peggy who> reminds us> > that our sweet Father is in control....definatl y not earthly> weaklings like> > us. It is Leanne, who is shaking in her boots right now, dealing> with every> > emotion known to man, who works to keep this sight running and> offers such> > good advice. It is sweet young Mothers like Kerry and who> are so> > worried about being here to raise thier babies, yet dig down> inside to offer> > comfort and share knowledge. It is all of us whining, ranting,> praying and> > hoping who take time every day to make an effort to help another> suffering> > soul. I am proud of us!> > > > Hugs, Joyce D.> > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA> > 2 COR. 12:10 ....when I am weak, then I am strong.> >>

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[Guest guest]

Kerry,

I remember the day I was told by the doctor that I had to have oxygen. The nurse checked my sats and the number was 82. They brought the oxygen immediately. I sat in her office, by myself, and sobbed. I just did not want it. The nurses kept coming in to see if I was ok. My docotr said that she was going to order it to be delivered at home. It was up to me if I used it but she would be negligent if she didnt order it. I cried all the way home and when it was delivered, I wouldnt even look at it. But the next morning, when I was having so much difficulty getting dressed because I could not breath right, I decided to just try it. I felt better right away. I was on 2 liters then..now on 8 to 10. That was one year ago exactly today. I am still self consciencious about it. I try to go without it sometimes, but find I just cant do it. My family is used to me with oxygen now and I even allowed a picture of me with the hose in my nose. I will never like it but have accepted that I will have to have it. It is not an easy transition but in time, you will probably be glad for it. Even though I hate it...I love it too. It keeps me breathing and living. I wish you courage and resolve in this matter. I will pray for you.

L.

IPF 01 HP 06

Re: Kerry

Peggy,It means a lot to me find this post. Thank you. Today was tough. Did FVC test 3 times (didn't even bother to ask results of that) because then I attempted Diffusion 2 times and was in tears after each. No luck, couldn't even come close to completing. I tried to compose myself before I went out to my family, but just couldn't hide the tears. My daughter said it's okay Mommy don't cry. I told her I tried my best (what we always tell her to do so I knew her response), she said "and that's all you can do." She rubbed my back and both kids had me smiling and laughing in spite of myself by the time I had to go do the 6 minute walk. I did my normal fast pace which had me out of breath pretty quick. I don't think I walked more than 2 minutes and she said okay we can go back to the room now. I glanced at the pulseox and it said 85. Doc w/ surely be calling O2 company tomorrow (he was out of office on vacation today). They gave me the flutter valve prescription I requested and I was on my way. I went over to the hospital and they gave me a super generic looking one, Joyce I protested for the Acapella, this is all they stock. It didn't impress me at the hospital, I will try it later before bed. After I got home one of the nurses called me and asked if there was anything she could do for me since was out. I discussed it all w/ her. She did look in my file and apparently they did do a full blood workup on me back in 2002 and the only thing even slightly off was my SED rate (anyone clarify which one that is for?). We talked about a few things and I told her I'd made the appointment for the 2nd opinion and she said she would actually call his office to see if they could get me in sooner. She called me back at 5:15 to say she hadn't heard back, but would call me tomorrow to follow up. My sister called today and I kinda broke the news to her about the downhill trend. That's all for now folks. Gotta think about dinner. Thanks for post from Jane too and your email Joyce. Love to you all, I'll update you again tomorrow and surely have more questions.KerryIPF '01 (but feeling like I'm newly diagnosed w/ this) > >> > Missy Joyce, I too think this group is so heaven sent. I am> thankful every> > time I click on the board and there are my heart friends. I Thank> God that> > Leanne had the thought and started this group. What a jewel she is.> > And YOU my good friend ALWAYS say just exactly what we need. You> just amaze> > me the way you can research> > all our ailments.> > We are all Blessed.> > Thank you.> > Love and Prayers, Peggy 9/04 ipf Florida "Worry looks> around, Sorry> > looks back, Faith looks up"> > > > Group, > > > > I know I am showing favor, but I think we just have the BEST> support group.> > Whenever my thoughts are racing, first one way then> another....whenever I am> > feeling panic...whenever I am feeling alone....I come here. I> know that you> > guys understand exactly where I am coming from. The wonderful> compassion> > and spiritual comfort that you offer each other is awesome.> > > > Today it was Lentz' letter to Fern. Wow!!! Powerful,> especially to> > those of us who know where she's been. It is always Peggy who> reminds us> > that our sweet Father is in control....definatl y not earthly> weaklings like> > us. It is Leanne, who is shaking in her boots right now, dealing> with every> > emotion known to man, who works to keep this sight running and> offers such> > good advice. It is sweet young Mothers like Kerry and who> are so> > worried about being here to raise thier babies, yet dig down> inside to offer> > comfort and share knowledge. It is all of us whining, ranting,> praying and> > hoping who take time every day to make an effort to help another> suffering> > soul. I am proud of us!> > > > Hugs, Joyce D.> > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA> > 2 COR. 12:10 ....when I am weak, then I am strong.> >>

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[Guest guest]

Kerry,

I remember the day I was told by the doctor that I had to have oxygen. The nurse checked my sats and the number was 82. They brought the oxygen immediately. I sat in her office, by myself, and sobbed. I just did not want it. The nurses kept coming in to see if I was ok. My docotr said that she was going to order it to be delivered at home. It was up to me if I used it but she would be negligent if she didnt order it. I cried all the way home and when it was delivered, I wouldnt even look at it. But the next morning, when I was having so much difficulty getting dressed because I could not breath right, I decided to just try it. I felt better right away. I was on 2 liters then..now on 8 to 10. That was one year ago exactly today. I am still self consciencious about it. I try to go without it sometimes, but find I just cant do it. My family is used to me with oxygen now and I even allowed a picture of me with the hose in my nose. I will never like it but have accepted that I will have to have it. It is not an easy transition but in time, you will probably be glad for it. Even though I hate it...I love it too. It keeps me breathing and living. I wish you courage and resolve in this matter. I will pray for you.

L.

IPF 01 HP 06

Re: Kerry

Peggy,It means a lot to me find this post. Thank you. Today was tough. Did FVC test 3 times (didn't even bother to ask results of that) because then I attempted Diffusion 2 times and was in tears after each. No luck, couldn't even come close to completing. I tried to compose myself before I went out to my family, but just couldn't hide the tears. My daughter said it's okay Mommy don't cry. I told her I tried my best (what we always tell her to do so I knew her response), she said "and that's all you can do." She rubbed my back and both kids had me smiling and laughing in spite of myself by the time I had to go do the 6 minute walk. I did my normal fast pace which had me out of breath pretty quick. I don't think I walked more than 2 minutes and she said okay we can go back to the room now. I glanced at the pulseox and it said 85. Doc w/ surely be calling O2 company tomorrow (he was out of office on vacation today). They gave me the flutter valve prescription I requested and I was on my way. I went over to the hospital and they gave me a super generic looking one, Joyce I protested for the Acapella, this is all they stock. It didn't impress me at the hospital, I will try it later before bed. After I got home one of the nurses called me and asked if there was anything she could do for me since was out. I discussed it all w/ her. She did look in my file and apparently they did do a full blood workup on me back in 2002 and the only thing even slightly off was my SED rate (anyone clarify which one that is for?). We talked about a few things and I told her I'd made the appointment for the 2nd opinion and she said she would actually call his office to see if they could get me in sooner. She called me back at 5:15 to say she hadn't heard back, but would call me tomorrow to follow up. My sister called today and I kinda broke the news to her about the downhill trend. That's all for now folks. Gotta think about dinner. Thanks for post from Jane too and your email Joyce. Love to you all, I'll update you again tomorrow and surely have more questions.KerryIPF '01 (but feeling like I'm newly diagnosed w/ this) > >> > Missy Joyce, I too think this group is so heaven sent. I am> thankful every> > time I click on the board and there are my heart friends. I Thank> God that> > Leanne had the thought and started this group. What a jewel she is.> > And YOU my good friend ALWAYS say just exactly what we need. You> just amaze> > me the way you can research> > all our ailments.> > We are all Blessed.> > Thank you.> > Love and Prayers, Peggy 9/04 ipf Florida "Worry looks> around, Sorry> > looks back, Faith looks up"> > > > Group, > > > > I know I am showing favor, but I think we just have the BEST> support group.> > Whenever my thoughts are racing, first one way then> another....whenever I am> > feeling panic...whenever I am feeling alone....I come here. I> know that you> > guys understand exactly where I am coming from. The wonderful> compassion> > and spiritual comfort that you offer each other is awesome.> > > > Today it was Lentz' letter to Fern. Wow!!! Powerful,> especially to> > those of us who know where she's been. It is always Peggy who> reminds us> > that our sweet Father is in control....definatl y not earthly> weaklings like> > us. It is Leanne, who is shaking in her boots right now, dealing> with every> > emotion known to man, who works to keep this sight running and> offers such> > good advice. It is sweet young Mothers like Kerry and who> are so> > worried about being here to raise thier babies, yet dig down> inside to offer> > comfort and share knowledge. It is all of us whining, ranting,> praying and> > hoping who take time every day to make an effort to help another> suffering> > soul. I am proud of us!> > > > Hugs, Joyce D.> > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA> > 2 COR. 12:10 ....when I am weak, then I am strong.> >>

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[Guest guest]

Kerry,

Here is my advice: Get the Helios, snap it to your belt. Light weight, out of the way. You may also get his big brother, the Marathon for longer times out. It lasts for hours. Then get compressed air tanks for back up....if you run out of liquid while you are out. You can get a small liquid tank for fill-ups to keep in the car. As active as you are, it would be the best way to go. You can also have a concentrator "R2D2" for home or simply use from your liquid tank. I used liquid until the 02/insurance decided that I could not be supplied with both liquid and compressed.

See, when you think you have no mucus, it is only hiding down there. Sometime maybe your husband can come up with you and we will show you how to do the percussion therapy. Also, you should use your flutter while you are nebulizing. About 1/2 through and at the end. Percussion also should take place immediatly after. From experience I have learned that the more of that germ ridden gunk that I can keep out of my lungs, the better I feel ...... and it has cut waaaaaaay down on infections.

You can call me anytime if it becomes confusing. Wish that I had had help early on. The provider does not offer much. The less equipment and services that you demand ..... the better thier bottom line looks. All about money!!!

Call me if you want to. I never want to call and interupt while you have so much to deal with.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> >> > hi kerry,> > > > i'm not sure if this is the right thing for me to say but i am > going > > to say it anyhow.> > > > i personally know how disheartening the words oxygen can sound and > > the initial sadness that comes with the words. now that i have had > my > > oxygen for quite some time, i try to express to other new oxygen > > users that this is a step up not a step down. that's my firm > belief.> > > > look at all the things you are doing now without the oxygen. think > of > > how much more you may be able to do with it. > > > > girl i slap that tank on my back and that hose up my nose and trek > my > > little way all through the gym that i go to. my husband has been > down > > because he recently had hernia surgery. i turn my concentrator up > as > > high as it will go and mow the lawn. (now grant it, that takes me > 10 > > times longer than it would for chuck to do it but i get it done > > eventually)> > > > this is a new beginning for you, not another method of the disease > > wearing you down. wear that hose with pride girl and show the > world > > you can keep up.> > > > love ya!!> > > > LCH 10-05> >>

[Guest guest]

Kerry,

Here is my advice: Get the Helios, snap it to your belt. Light weight, out of the way. You may also get his big brother, the Marathon for longer times out. It lasts for hours. Then get compressed air tanks for back up....if you run out of liquid while you are out. You can get a small liquid tank for fill-ups to keep in the car. As active as you are, it would be the best way to go. You can also have a concentrator "R2D2" for home or simply use from your liquid tank. I used liquid until the 02/insurance decided that I could not be supplied with both liquid and compressed.

See, when you think you have no mucus, it is only hiding down there. Sometime maybe your husband can come up with you and we will show you how to do the percussion therapy. Also, you should use your flutter while you are nebulizing. About 1/2 through and at the end. Percussion also should take place immediatly after. From experience I have learned that the more of that germ ridden gunk that I can keep out of my lungs, the better I feel ...... and it has cut waaaaaaay down on infections.

You can call me anytime if it becomes confusing. Wish that I had had help early on. The provider does not offer much. The less equipment and services that you demand ..... the better thier bottom line looks. All about money!!!

Call me if you want to. I never want to call and interupt while you have so much to deal with.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> >> > hi kerry,> > > > i'm not sure if this is the right thing for me to say but i am > going > > to say it anyhow.> > > > i personally know how disheartening the words oxygen can sound and > > the initial sadness that comes with the words. now that i have had > my > > oxygen for quite some time, i try to express to other new oxygen > > users that this is a step up not a step down. that's my firm > belief.> > > > look at all the things you are doing now without the oxygen. think > of > > how much more you may be able to do with it. > > > > girl i slap that tank on my back and that hose up my nose and trek > my > > little way all through the gym that i go to. my husband has been > down > > because he recently had hernia surgery. i turn my concentrator up > as > > high as it will go and mow the lawn. (now grant it, that takes me > 10 > > times longer than it would for chuck to do it but i get it done > > eventually)> > > > this is a new beginning for you, not another method of the disease > > wearing you down. wear that hose with pride girl and show the > world > > you can keep up.> > > > love ya!!> > > > LCH 10-05> >>