Jeff

[Guest guest]

There are many here on Cellcept of who have been and they will answer

the issue of their experiences. I would offer two comments though.

First, how long have you been back on it? It is quite common for you

to have some difficulty with any med of this nature the first 2-4

weeks and then that smoothe out. Did you have the fatigue with it

before?

Second, " my doctor has put me back on it. " I wish that was more

often " my doctor has suggested or recommended. " Understand you should

listen to your doctor but ultimately the choices are yours. You need

the education and advice from your doctors and others, but then it

comes down to life quality versus risk and choices that only you can

make.

I'm sure others will jump in with their CellCept experiences. Just

always feel free to ask as many questions as you want.

> >

> > Hello everyone, I am new to this and I am not sure I even belong

> here

> > in this group since My condition allows me much more freedom. I

am a

> > follicular bronchiolitis patient with radiation induced fibrosis

> and a

> > partially paralized right diaphram. My O2 sats at rest are 91%,

but

> any

> > exercise, including walking, just drops it like a rock down into

> the

> > low 80's. my resting heart rate is 107. But in reading the chat I

> have a

> > long ways to go to be like everyone. I am still trying to

understand

> > what all this really means to me and my health so any insights

> would be

> > great.

> >

> > Jeff allred

> >

> > (unknown)

> >

> >

> >

> >

> >

> > I've been out of circulation for about a week. Nothing like

coming

> home

> > to 800+ emails.....I must confess that I did not read them all.

> Hence,

> > my question........what is CPAP and BIPAP? I can only imagine how

> much

> > important stuff I missed. My news......the HRCT showed no

> advancement of

> > the IPF.PFT numbers are pretty much the same except for the DCLO

> > (DLCO??), you know what I mean. That number is alarming. That is

> only

> > one of the follow-up questions that I didn't get to ask. Why the

> problem

> > with the exchange, carbon dioxide for oxygen? We really liked the

> new

> > pulmonologist. As a " new patient " they'd scheduled an hour

> appointment.

> > He spent almost 2 hours with us. I had a list of questions, but

> didn't

> > get all of them answered simply because we did so much yakking.

He

> was

> > genuinely impressed with the list of questions, kept saying so,

kept

> > telling Eva " I wish all my patients were like this " . The " like

> this " is

> > a DIRECT result of what I have learned here, folks, thank you

very

> much

> > !!! What a relief.....going to Anchorage to meet a new doc and

have

> him

> > turn out to be great, knowledgeable, honest and open. He stopped

the

> > azathiaprine and prednisone......the imuran immediately, the

> prednisone

> > titrate down 5 mg every 2 weeks. I'm at 15 now. He tells me that

> those

> > drugs are meant for a 6 month trial only, and I've been on them

alot

> > longer than that. Didn't address the question - - prednisone for

PF

> vs

> > IPF. I'll be really glad to be off the stuff. I believe it saved

my

> life

> > a couple years ago, but things have changed. Also saw the chemo

> > Oncologist....he proclaimed me to still be clean. All in all.... a

> > pretty good trip. Eva says it is all the prayer, bless her heart,

> I'm

> > certainly not one to argue with her.

> >

> > On the subject of smoking........Ohhhhhh, I'm jones'n already. I

> smoked

> > for 28 years. Had been trying to quit for more than 2 years, using

> > patches and Zyban (wellbutrin) off and on. Then they found this

> lymph

> > node the size of an egg in the middle of my chest, biopsy showed

it

> to

> > be malignant....dx....lung cancer. Amazing..........haven't had a

> > cigarette since that day in August, 2004. I actually tried to

have a

> > cigarette in October 2004, but by that time the radiation had

> trashed my

> > lungs and I couldn't physically get the smoke down, hurt bad. And

> that

> > was it. I was talking to a class of hi-school juniors and seniors

> about

> > a year ago, told them that story. One of the little wise-asses

> > asked.... " If you could, would you? " I had to tell the

truth...... " I

> > don't know, probably " . I still crave, I still love the smell, but

I

> am

> > SO thankful that I quit, and I will never start again. The

physical

> > addiction part is actually the easiest part to deal with. It's the

> > mental part that, at my age, will never go away. Somebody here

> suggested

> > to delay having a smoke for an hour. I've heard that the actual

> craving

> > only lasts a matter of seconds. However, if they come every 3

> > minutes........... Maybe 20 years ago I was living in a house

with a

> > lady and 2 children. I kept passing out, after tests for a week

it

> was

> > found to be carbon monoxide poisoning. The doctor called and said

> > " first, go open all the windows, then I'll tell you what's wrong

> with

> > you " . I asked why the other people in the house weren't effected

> and he

> > told me that, by virtue of the fact that I was a smoker, I

carried

> 50%

> > of a lethal dose of carbon monoxide in my bloodstream at all

times.

> True

> > or not, I stopped smoking at that very moment........no

withdrawal,

> no

> > craving, no moods, no nothin'. I was off the cigarettes for

almost 5

> > months. Then I went to Australia....... and one night my friends

> and I

> > enjoyed several Toohey's Olds, followed by several drops of tawny

> > port.....next thing I know I'm working on a pack of Winfields.

Did

> you

> > know that they have cigarettes Down There that have 50 cigs to a

> pack??

> > Sorry ........negative advertising, I know. Truth is that I

was

> just

> > looking for an excuse to start smoking again.

> >

> > I've gone on.....and on and on.....oh well!! I missed you guys !!!

> >

> > jim IPF 05

> > alaska

> >

> >

> >

> > _____

> >

> > Looking for last minute shopping deals? Find

> >

> <http://us.rd.

>

<http://us.rd.yahoo.com/evt=51734/*http://tools.search.yahoo.com/newse

>

> yahoo.com/evt=51734/*http://tools.search.yahoo.com/newse

> ar

> > ch/category.php?category=shopping> them fast with Yahoo! Search.

> >

>

[Guest guest]

And Bruce says it all so well Jeff. There isnt much more we can say

accept that we love this group and love everyone here. Welcome to

the group, sorry you have your diagnoses and your welcome to stay as

long as you like and become part of this wonderful GROUP!

Sandie

> >

> > Hello everyone, I am new to this and I am not sure I even

belong

> here

> > in this group since My condition allows me much more freedom. I

am a

> > follicular bronchiolitis patient with radiation induced fibrosis

> and a

> > partially paralized right diaphram. My O2 sats at rest are 91%,

but

> any

> > exercise, including walking, just drops it like a rock down into

> the

> > low 80's. my resting heart rate is 107. But in reading the chat I

> have a

> > long ways to go to be like everyone. I am still trying to

understand

> > what all this really means to me and my health so any insights

> would be

> > great.

> >

> > Jeff allred

> >

> > (unknown)

> >

> >

> >

> >

> >

> > I've been out of circulation for about a week. Nothing like

coming

> home

> > to 800+ emails.....I must confess that I did not read them all.

> Hence,

> > my question........what is CPAP and BIPAP? I can only imagine how

> much

> > important stuff I missed. My news......the HRCT showed no

> advancement of

> > the IPF.PFT numbers are pretty much the same except for the DCLO

> > (DLCO??), you know what I mean. That number is alarming. That is

> only

> > one of the follow-up questions that I didn't get to ask. Why the

> problem

> > with the exchange, carbon dioxide for oxygen? We really liked the

> new

> > pulmonologist. As a " new patient " they'd scheduled an hour

> appointment.

> > He spent almost 2 hours with us. I had a list of questions, but

> didn't

> > get all of them answered simply because we did so much yakking.

He

> was

> > genuinely impressed with the list of questions, kept saying so,

kept

> > telling Eva " I wish all my patients were like this " . The " like

> this " is

> > a DIRECT result of what I have learned here, folks, thank you

very

> much

> > !!! What a relief.....going to Anchorage to meet a new doc and

have

> him

> > turn out to be great, knowledgeable, honest and open. He stopped

the

> > azathiaprine and prednisone......the imuran immediately, the

> prednisone

> > titrate down 5 mg every 2 weeks. I'm at 15 now. He tells me that

> those

> > drugs are meant for a 6 month trial only, and I've been on them

alot

> > longer than that. Didn't address the question - - prednisone for

PF

> vs

> > IPF. I'll be really glad to be off the stuff. I believe it saved

my

> life

> > a couple years ago, but things have changed. Also saw the chemo

> > Oncologist....he proclaimed me to still be clean. All in all.... a

> > pretty good trip. Eva says it is all the prayer, bless her heart,

> I'm

> > certainly not one to argue with her.

> >

> > On the subject of smoking........Ohhhhhh, I'm jones'n already. I

> smoked

> > for 28 years. Had been trying to quit for more than 2 years, using

> > patches and Zyban (wellbutrin) off and on. Then they found this

> lymph

> > node the size of an egg in the middle of my chest, biopsy showed

it

> to

> > be malignant....dx....lung cancer. Amazing..........haven't had a

> > cigarette since that day in August, 2004. I actually tried to

have a

> > cigarette in October 2004, but by that time the radiation had

> trashed my

> > lungs and I couldn't physically get the smoke down, hurt bad. And

> that

> > was it. I was talking to a class of hi-school juniors and seniors

> about

> > a year ago, told them that story. One of the little wise-asses

> > asked.... " If you could, would you? " I had to tell the

truth...... " I

> > don't know, probably " . I still crave, I still love the smell, but

I

> am

> > SO thankful that I quit, and I will never start again. The

physical

> > addiction part is actually the easiest part to deal with. It's the

> > mental part that, at my age, will never go away. Somebody here

> suggested

> > to delay having a smoke for an hour. I've heard that the actual

> craving

> > only lasts a matter of seconds. However, if they come every 3

> > minutes........... Maybe 20 years ago I was living in a house

with a

> > lady and 2 children. I kept passing out, after tests for a week

it

> was

> > found to be carbon monoxide poisoning. The doctor called and said

> > " first, go open all the windows, then I'll tell you what's wrong

> with

> > you " . I asked why the other people in the house weren't effected

> and he

> > told me that, by virtue of the fact that I was a smoker, I

carried

> 50%

> > of a lethal dose of carbon monoxide in my bloodstream at all

times.

> True

> > or not, I stopped smoking at that very moment........no

withdrawal,

> no

> > craving, no moods, no nothin'. I was off the cigarettes for

almost 5

> > months. Then I went to Australia....... and one night my friends

> and I

> > enjoyed several Toohey's Olds, followed by several drops of tawny

> > port.....next thing I know I'm working on a pack of Winfields.

Did

> you

> > know that they have cigarettes Down There that have 50 cigs to a

> pack??

> > Sorry ........negative advertising, I know. Truth is that I

was

> just

> > looking for an excuse to start smoking again.

> >

> > I've gone on.....and on and on.....oh well!! I missed you guys !!!

> >

> > jim IPF 05

> > alaska

> >

> >

> >

> > _____

> >

> > Looking for last minute shopping deals? Find

> >

>

<http://us.rd.yahoo.com/evt=51734/*http://tools.search.yahoo.com/newse

> ar

> > ch/category.php?category=shopping> them fast with Yahoo! Search.

> >

>

[Guest guest]

Jeff,

I took Cellcept for 9 years with no side effects. Just recently the doc took me off of it because I was declining. There are several of us on Cellcept. You are so fortunate to loose the weight. It took me forever and then I only lost because I was sick.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> >> > Hello everyone, I am new to this and I am not sure I even belong > here> > in this group since My condition allows me much more freedom. I am a> > follicular bronchiolitis patient with radiation induced fibrosis > and a> > partially paralized right diaphram. My O2 sats at rest are 91%, but > any> > exercise, including walking, just drops it like a rock down into > the> > low 80's. my resting heart rate is 107. But in reading the chat I > have a> > long ways to go to be like everyone. I am still trying to understand> > what all this really means to me and my health so any insights > would be> > great.> > > > Jeff allred> > > > (unknown)> > > > > > > > > > > > I've been out of circulation for about a week. Nothing like coming > home> > to 800+ emails.....I must confess that I did not read them all. > Hence,> > my question........what is CPAP and BIPAP? I can only imagine how > much> > important stuff I missed. My news......the HRCT showed no > advancement of> > the IPF.PFT numbers are pretty much the same except for the DCLO> > (DLCO??), you know what I mean. That number is alarming. That is > only> > one of the follow-up questions that I didn't get to ask. Why the > problem> > with the exchange, carbon dioxide for oxygen? We really liked the > new> > pulmonologist. As a "new patient" they'd scheduled an hour > appointment.> > He spent almost 2 hours with us. I had a list of questions, but > didn't> > get all of them answered simply because we did so much yakking. He > was> > genuinely impressed with the list of questions, kept saying so, kept> > telling Eva "I wish all my patients were like this". The "like > this" is> > a DIRECT result of what I have learned here, folks, thank you very > much> > !!! What a relief.....going to Anchorage to meet a new doc and have > him> > turn out to be great, knowledgeable, honest and open. He stopped the> > azathiaprine and prednisone......the imuran immediately, the > prednisone> > titrate down 5 mg every 2 weeks. I'm at 15 now. He tells me that > those> > drugs are meant for a 6 month trial only, and I've been on them alot> > longer than that. Didn't address the question - - prednisone for PF > vs> > IPF. I'll be really glad to be off the stuff. I believe it saved my > life> > a couple years ago, but things have changed. Also saw the chemo> > Oncologist....he proclaimed me to still be clean. All in all.... a> > pretty good trip. Eva says it is all the prayer, bless her heart, > I'm> > certainly not one to argue with her. > > > > On the subject of smoking........Ohhhhhh, I'm jones'n already. I > smoked> > for 28 years. Had been trying to quit for more than 2 years, using> > patches and Zyban (wellbutrin) off and on. Then they found this > lymph> > node the size of an egg in the middle of my chest, biopsy showed it > to> > be malignant....dx....lung cancer. Amazing..........haven't had a> > cigarette since that day in August, 2004. I actually tried to have a> > cigarette in October 2004, but by that time the radiation had > trashed my> > lungs and I couldn't physically get the smoke down, hurt bad. And > that> > was it. I was talking to a class of hi-school juniors and seniors > about> > a year ago, told them that story. One of the little wise-asses> > asked...." If you could, would you?" I had to tell the truth......"I> > don't know, probably". I still crave, I still love the smell, but I > am> > SO thankful that I quit, and I will never start again. The physical> > addiction part is actually the easiest part to deal with. It's the> > mental part that, at my age, will never go away. Somebody here > suggested> > to delay having a smoke for an hour. I've heard that the actual > craving> > only lasts a matter of seconds. However, if they come every 3> > minutes........... Maybe 20 years ago I was living in a house with a> > lady and 2 children. I kept passing out, after tests for a week it > was> > found to be carbon monoxide poisoning. The doctor called and said> > "first, go open all the windows, then I'll tell you what's wrong > with> > you". I asked why the other people in the house weren't effected > and he> > told me that, by virtue of the fact that I was a smoker, I carried > 50%> > of a lethal dose of carbon monoxide in my bloodstream at all times. > True> > or not, I stopped smoking at that very moment........no withdrawal, > no> > craving, no moods, no nothin'. I was off the cigarettes for almost 5> > months. Then I went to Australia....... and one night my friends > and I> > enjoyed several Toohey's Olds, followed by several drops of tawny> > port.....next thing I know I'm working on a pack of Winfields. Did > you> > know that they have cigarettes Down There that have 50 cigs to a > pack??> > Sorry ........negative advertising, I know. Truth is that I was > just> > looking for an excuse to start smoking again. > > > > I've gone on.....and on and on.....oh well!! I missed you guys !!!> > > > jim IPF 05> > alaska> > > > > > > > _____ > > > > Looking for last minute shopping deals? Find> > > <http://us.rd.> <http://us.rd.yahoo.com/evt=51734/*http://tools.search.yahoo.com/newse>> yahoo.com/evt=51734/*http://tools.search.yahoo.com/newse> ar> > ch/category.php?category=shopping> them fast with Yahoo! Search.> >>

[Guest guest]

Jeff,

I took Cellcept for 9 years with no side effects. Just recently the doc took me off of it because I was declining. There are several of us on Cellcept. You are so fortunate to loose the weight. It took me forever and then I only lost because I was sick.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> >> > Hello everyone, I am new to this and I am not sure I even belong > here> > in this group since My condition allows me much more freedom. I am a> > follicular bronchiolitis patient with radiation induced fibrosis > and a> > partially paralized right diaphram. My O2 sats at rest are 91%, but > any> > exercise, including walking, just drops it like a rock down into > the> > low 80's. my resting heart rate is 107. But in reading the chat I > have a> > long ways to go to be like everyone. I am still trying to understand> > what all this really means to me and my health so any insights > would be> > great.> > > > Jeff allred> > > > (unknown)> > > > > > > > > > > > I've been out of circulation for about a week. Nothing like coming > home> > to 800+ emails.....I must confess that I did not read them all. > Hence,> > my question........what is CPAP and BIPAP? I can only imagine how > much> > important stuff I missed. My news......the HRCT showed no > advancement of> > the IPF.PFT numbers are pretty much the same except for the DCLO> > (DLCO??), you know what I mean. That number is alarming. That is > only> > one of the follow-up questions that I didn't get to ask. Why the > problem> > with the exchange, carbon dioxide for oxygen? We really liked the > new> > pulmonologist. As a "new patient" they'd scheduled an hour > appointment.> > He spent almost 2 hours with us. I had a list of questions, but > didn't> > get all of them answered simply because we did so much yakking. He > was> > genuinely impressed with the list of questions, kept saying so, kept> > telling Eva "I wish all my patients were like this". The "like > this" is> > a DIRECT result of what I have learned here, folks, thank you very > much> > !!! What a relief.....going to Anchorage to meet a new doc and have > him> > turn out to be great, knowledgeable, honest and open. He stopped the> > azathiaprine and prednisone......the imuran immediately, the > prednisone> > titrate down 5 mg every 2 weeks. I'm at 15 now. He tells me that > those> > drugs are meant for a 6 month trial only, and I've been on them alot> > longer than that. Didn't address the question - - prednisone for PF > vs> > IPF. I'll be really glad to be off the stuff. I believe it saved my > life> > a couple years ago, but things have changed. Also saw the chemo> > Oncologist....he proclaimed me to still be clean. All in all.... a> > pretty good trip. Eva says it is all the prayer, bless her heart, > I'm> > certainly not one to argue with her. > > > > On the subject of smoking........Ohhhhhh, I'm jones'n already. I > smoked> > for 28 years. Had been trying to quit for more than 2 years, using> > patches and Zyban (wellbutrin) off and on. Then they found this > lymph> > node the size of an egg in the middle of my chest, biopsy showed it > to> > be malignant....dx....lung cancer. Amazing..........haven't had a> > cigarette since that day in August, 2004. I actually tried to have a> > cigarette in October 2004, but by that time the radiation had > trashed my> > lungs and I couldn't physically get the smoke down, hurt bad. And > that> > was it. I was talking to a class of hi-school juniors and seniors > about> > a year ago, told them that story. One of the little wise-asses> > asked...." If you could, would you?" I had to tell the truth......"I> > don't know, probably". I still crave, I still love the smell, but I > am> > SO thankful that I quit, and I will never start again. The physical> > addiction part is actually the easiest part to deal with. It's the> > mental part that, at my age, will never go away. Somebody here > suggested> > to delay having a smoke for an hour. I've heard that the actual > craving> > only lasts a matter of seconds. However, if they come every 3> > minutes........... Maybe 20 years ago I was living in a house with a> > lady and 2 children. I kept passing out, after tests for a week it > was> > found to be carbon monoxide poisoning. The doctor called and said> > "first, go open all the windows, then I'll tell you what's wrong > with> > you". I asked why the other people in the house weren't effected > and he> > told me that, by virtue of the fact that I was a smoker, I carried > 50%> > of a lethal dose of carbon monoxide in my bloodstream at all times. > True> > or not, I stopped smoking at that very moment........no withdrawal, > no> > craving, no moods, no nothin'. I was off the cigarettes for almost 5> > months. Then I went to Australia....... and one night my friends > and I> > enjoyed several Toohey's Olds, followed by several drops of tawny> > port.....next thing I know I'm working on a pack of Winfields. Did > you> > know that they have cigarettes Down There that have 50 cigs to a > pack??> > Sorry ........negative advertising, I know. Truth is that I was > just> > looking for an excuse to start smoking again. > > > > I've gone on.....and on and on.....oh well!! I missed you guys !!!> > > > jim IPF 05> > alaska> > > > > > > > _____ > > > > Looking for last minute shopping deals? Find> > > <http://us.rd.> <http://us.rd.yahoo.com/evt=51734/*http://tools.search.yahoo.com/newse>> yahoo.com/evt=51734/*http://tools.search.yahoo.com/newse> ar> > ch/category.php?category=shopping> them fast with Yahoo! Search.> >>

[Guest guest]

Jeff,

Your diffusion is sooooo low. I am so glad it is improving.

Yeah, we all badmouth insurance (justified badmouthing) but I am so thankful for it. There is no way I could have had the medical care that has kept me ticking for these 10 years. My doc said today.....you remember that we told you 3-5 years and look ...here you are!

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

> >> > Hello everyone, I am new to this and I am not sure I even belong > here> > in this group since My condition allows me much more freedom. I am a> > follicular bronchiolitis patient with radiation induced fibrosis > and a> > partially paralized right diaphram. My O2 sats at rest are 91%, but > any> > exercise, including walking, just drops it like a rock down into > the> > low 80's. my resting heart rate is 107. But in reading the chat I > have a> > long ways to go to be like everyone. I am still trying to understand> > what all this really means to me and my health so any insights > would be> > great.> > > > Jeff allred> > > > (unknown)> > > > > > > > > > > > I've been out of circulation for about a week. Nothing like coming > home> > to 800+ emails.....I must confess that I did not read them all. > Hence,> > my question........what is CPAP and BIPAP? I can only imagine how > much> > important stuff I missed. My news......the HRCT showed no > advancement of> > the IPF.PFT numbers are pretty much the same except for the DCLO> > (DLCO??), you know what I mean. That number is alarming. That is > only> > one of the follow-up questions that I didn't get to ask. Why the > problem> > with the exchange, carbon dioxide for oxygen? We really liked the > new> > pulmonologist. As a "new patient" they'd scheduled an hour > appointment.> > He spent almost 2 hours with us. I had a list of questions, but > didn't> > get all of them answered simply because we did so much yakking. He > was> > genuinely impressed with the list of questions, kept saying so, kept> > telling Eva "I wish all my patients were like this". The "like > this" is> > a DIRECT result of what I have learned here, folks, thank you very > much> > !!! What a relief.....going to Anchorage to meet a new doc and have > him> > turn out to be great, knowledgeable, honest and open. He stopped the> > azathiaprine and prednisone......the imuran immediately, the > prednisone> > titrate down 5 mg every 2 weeks. I'm at 15 now. He tells me that > those> > drugs are meant for a 6 month trial only, and I've been on them alot> > longer than that. Didn't address the question - - prednisone for PF > vs> > IPF. I'll be really glad to be off the stuff. I believe it saved my > life> > a couple years ago, but things have changed. Also saw the chemo> > Oncologist....he proclaimed me to still be clean. All in all.... a> > pretty good trip. Eva says it is all the prayer, bless her heart, > I'm> > certainly not one to argue with her. > > > > On the subject of smoking........Ohhhhhh, I'm jones'n already. I > smoked> > for 28 years. Had been trying to quit for more than 2 years, using> > patches and Zyban (wellbutrin) off and on. Then they found this > lymph> > node the size of an egg in the middle of my chest, biopsy showed it > to> > be malignant....dx....lung cancer. Amazing..........haven't had a> > cigarette since that day in August, 2004. I actually tried to have a> > cigarette in October 2004, but by that time the radiation had > trashed my> > lungs and I couldn't physically get the smoke down, hurt bad. And > that> > was it. I was talking to a class of hi-school juniors and seniors > about> > a year ago, told them that story. One of the little wise-asses> > asked...." If you could, would you?" I had to tell the truth......"I> > don't know, probably". I still crave, I still love the smell, but I > am> > SO thankful that I quit, and I will never start again. The physical> > addiction part is actually the easiest part to deal with. It's the> > mental part that, at my age, will never go away. Somebody here > suggested> > to delay having a smoke for an hour. I've heard that the actual > craving> > only lasts a matter of seconds. However, if they come every 3> > minutes........... Maybe 20 years ago I was living in a house with a> > lady and 2 children. I kept passing out, after tests for a week it > was> > found to be carbon monoxide poisoning. The doctor called and said> > "first, go open all the windows, then I'll tell you what's wrong > with> > you". I asked why the other people in the house weren't effected > and he> > told me that, by virtue of the fact that I was a smoker, I carried > 50%> > of a lethal dose of carbon monoxide in my bloodstream at all times. > True> > or not, I stopped smoking at that very moment........no withdrawal, > no> > craving, no moods, no nothin'. I was off the cigarettes for almost 5> > months. Then I went to Australia....... and one night my friends > and I> > enjoyed several Toohey's Olds, followed by several drops of tawny> > port.....next thing I know I'm working on a pack of Winfields. Did > you> > know that they have cigarettes Down There that have 50 cigs to a > pack??> > Sorry ........negative advertising, I know. Truth is that I was > just> > looking for an excuse to start smoking again. > > > > I've gone on.....and on and on.....oh well!! I missed you guys !!!> > > > jim IPF 05> > alaska> > > > > > > > _____ > > > > Looking for last minute shopping deals? Find> > > <http://us.rd.> <http://us.rd.yahoo.com/evt=51734/*http://tools.search.yahoo.com/newse>> yahoo.com/evt=51734/*http://tools.search.yahoo.com/newse> ar> > ch/category.php?category=shopping> them fast with Yahoo! Search.> >>>

[Guest guest]

Hi Jeff, I'm also going to jump on the oximeter bandwagon. Such a useful tool to have to see what our saturations are doing. Some pulmos will give you a prescription and some insurance will pay for them. Just depends. I have a Nonin oximeter that a dear friend gave me 4 years ago and I use it faithfully and think of her every time I use it. (She has since passed away from this dreadful disease) Take care of you, man. Leanne uip 1/03 Illinois listed for single lung transplant 10-12-07Jeff Allred wrote: My thanks to everyone welcoming me.I just don't know how to tell when I am doing to much or not getting enough oxygen until I go way under. There has to be a clue. I am not familiar with "Specialist Teaching Centers", what are they? -----Original Message-----From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Sent: Thursday, December 20, 2007 10:43 PMTo: Breathe-Support Subject: Re: Air travel issues Hi Jeff, let me say welcome first..I've been reading your posts, sorry you're having such a puzzling time. It seems you really do need to visit one of the Specialist Teaching Centres. As for Air Travel...you can probably get an 'Altitude Simulation' Test done. I'm in Australia & had one done in preparation for a long-haul flight a few months ago. I'm not on daily oxygen at all but needed oxygen supplementation for the flight based on that test. They can then advise what flow rate you need as well. I only needed 2L Continuous. Good Luck in Oz IPF: Fibrotic NSIP/UIP???? Reynauds' May 2007 I

can't help on what US airlines offer. >> I have not travel by air since the surgery that finished me of and > made sure I stayed on this road. I am a bit nervous to travel by air > for fear of desaurating too much. How have you all done with that?>

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Awowah, I want to be ten foot tall and bullet proof (stamps foot and has tantrum)

Love Ze xx>> Zena...guess I wasn't clear...I was literally referring to the guys as is 'the men'. lol> > Sher; ipf 3-06; OR> Don't fret about tomorrow, God is already there!>

[Guest guest]

Hi Jeff, I wish you every bit of Blessings in your search for the right Doctor. All I KNOW FOR SUREis that prednisone does NOTHING for IPF. I am forever changed because of it. Just be cautious dealing with it.I have forgotten what your DX was, will you please put it by your signature on the bottom.You will see how we sign off. It helps us keep or information straight. and for we who have OD.God Bless You. Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." That's ok . I speak all sorts of other dialects too Ironically we have a medical school here, but their pulmonary department seems as if it is still in the 1960's in terms of training. I live in Salt Lake City, Utah U.S.A. and had to go to Denver, Colorado U.S.A. (400 miles away) to get a complete pulmonary exam because there are no specialists in Salt Lake who know how to handle my disease. My doctor here in town is calling to Denver for instructions on what to do all the time. So that is why I am so confused, doctors do not want to touch me because they have no clue how to treat me. I have seen a half dozen doctors and she was the only one who would take me on. I work in the medical world so I do have a lot of contacts and avenues I can explore. I am very versed in cardiology and orthopaedics, but pulmonary is not an area I spent a lot of time in so I know just enough to be dangerous - lol. So I am now on a quest to learn this area so I can understand how to work with my new worst friend. That is where all your experiences come in handy. I find practical application is often very different from textbook therory. Mybe I can find a way to keep my quality of life up by learning from the true masters - My new friends.  Re: Air travel issuesSorry Jeff, I'm probably speaking Aussie lingo here..I mean a Medical Specialist attached to either a Pulmonary/Respiratory Diseases Research Facility or a Doctor Training Facility that excels in Lung Problems or some such.By the time this gets posted someone else will have set you sraight I supect! in Oz> >> > I have not travel by air since the surgery that finished me of and > > made sure I stayed on this road. I am a bit nervous to travel by air > > for fear of desaurating too much. How have you all done with that?> >>

[Guest guest]

Peggy:

I forget to type in the signoff.....as I post on the board and not

through email, so have to type each time.....

But Peggy's point is why I had a VATS, confirmed beyond doubt I have

IPF and chose no Imuran and Prednisone.

There are some doctors who believe some temporary relief is provided

by prednisone for IPF. Now, prednisone is proven to sometimes help

other forms of PF. This is one place where we do get into trouble

lumping the forms as IPF has a very different pathology and is

characteristics. It started in definition as just " cause unknown " but

today it is carefully defined as a quite distinct form of PF.

Bruce Moreland 58 IPF 08/07 Dallas/Plano

> > >

> > > I have not travel by air since the surgery that finished me of

and

> > > made sure I stayed on this road. I am a bit nervous to travel

by

> air

> > > for fear of desaurating too much. How have you all done with

that?

> > >

> >

>

[Guest guest]

Peggy:

I forget to type in the signoff.....as I post on the board and not

through email, so have to type each time.....

But Peggy's point is why I had a VATS, confirmed beyond doubt I have

IPF and chose no Imuran and Prednisone.

There are some doctors who believe some temporary relief is provided

by prednisone for IPF. Now, prednisone is proven to sometimes help

other forms of PF. This is one place where we do get into trouble

lumping the forms as IPF has a very different pathology and is

characteristics. It started in definition as just " cause unknown " but

today it is carefully defined as a quite distinct form of PF.

Bruce Moreland 58 IPF 08/07 Dallas/Plano

> > >

> > > I have not travel by air since the surgery that finished me of

and

> > > made sure I stayed on this road. I am a bit nervous to travel

by

> air

> > > for fear of desaurating too much. How have you all done with

that?

> > >

> >

>

[Guest guest]

Jeff,

How about Brochiolitis Obliterans, Pulmonary Fibrosis, Partially Paralyzed Diaphram...then stick in the year. Regardless of the fact that your Pf was induced by radiation, it is what it is.

I had all the horrid side effects of Prednisone at high doses, too. I have been through two rounds. Being a girl, I cried day and night. It just made me a basket case. I have never been totally off. I am on 10mg a day now.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. > > >> > > I have not travel by air since the surgery that finished me of and > > > made sure I stayed on this road. I am a bit nervous to travel by air> > > > for fear of desaurating too much. How have you all done with that?> > >> >>