Re: new subscriber - similar problems

[Guest guest]

Thanks Gigi, so far so good and they are all very kind, on break from

tests until Noon...Wait until you hear this one..

sandie

> > >

> > > In March 2007 I was diagnosed with ILD. This was found through

a

> > > routine physical - no symptoms on my part and no knowledge by

me

> > that

> > > this disease even existed. The doctors still have some question

> on

> > > the cause, most likely connective tissue related. I am now on

> > > prednisone, slowly decreasing the dosage in an effort to get it

> > under

> > > control. Unfortunately, my last appointment indicated abnormal

> > > diffusing capacity, and we are now trying a different med to

turn

> > > that around. I am participating in local pulmonary rehab, and

> have

> > > regular pulmonary visits at Mayo Clinic, as well as with my

local

> > > physician.

> > >

> > > So much of what I have read on the internet has been very

> negative,

> > > but now I've found a couple of chatrooms like this where I can

> > > connect with people who have experience and optimism, and give

> > > support. I'm starting to realize what to expect with this

> disease,

> > > and I don't like it. The doctors tell me that all cases are

> > > different, and symptoms vary as well.

> > >

> > > Since acknowledgement of this disease is just starting to sink

in

> > to

> > > me, I'm really scared about the future. I know most of you have

> > > probably experienced this too. There are just so many unknowns.

> > > Most days I feel " normal " and my hopes are high that I can

fight

> > > this. I've been noticing slight changes in how I feel

physically,

> > and

> > > that makes me even more nervous. I think these physical changes

> can

> > > sometimes be intensified by my anxiety, but then maybe I'm just

> > > hoping that is the case. I've been wondering why this has

> happened

> > to

> > > me. Those days of depression are hard to fight. I don't want to

> be

> > on

> > > oxygen, in a wheelchair, or not be on earth to enjoy my

> > grandchildren

> > > or be a companion for my husband and children. This is not how

my

> > > life at 55 was suppose to be!

> > >

> > > Does anyone know of any natural or herbal help available? I

want

> to

> > > pursue all avenues available and come to my next doctor's

> > appointment

> > > with more knowledge. At this point, I'm willing to try

anything.

> I

> > > started taking cellcept about a month ago. Prior to that, I was

> on

> > > aziathioprine but when my diffusing capacity went into the

> abnormal

> > > range, the Mayo dr. thought we should change that medication to

> see

> > > if a change would make a difference. I'm scheduled to revisit

> there

> > > in January, and may undergo a lung biopsy along with new

testing

> to

> > > see if there is a specific reason as to why this is happening.

In

> > the

> > > meantime, I wait. And worry. I know my life won't be " normal "

> > again.

> > > I'm just hoping that you with experience can give me some hope.

> > >

> > > gigi

> > >

> >

>

[Guest guest]

Thanks Gigi, so far so good and they are all very kind, on break from

tests until Noon...Wait until you hear this one..

sandie

> > >

> > > In March 2007 I was diagnosed with ILD. This was found through

a

> > > routine physical - no symptoms on my part and no knowledge by

me

> > that

> > > this disease even existed. The doctors still have some question

> on

> > > the cause, most likely connective tissue related. I am now on

> > > prednisone, slowly decreasing the dosage in an effort to get it

> > under

> > > control. Unfortunately, my last appointment indicated abnormal

> > > diffusing capacity, and we are now trying a different med to

turn

> > > that around. I am participating in local pulmonary rehab, and

> have

> > > regular pulmonary visits at Mayo Clinic, as well as with my

local

> > > physician.

> > >

> > > So much of what I have read on the internet has been very

> negative,

> > > but now I've found a couple of chatrooms like this where I can

> > > connect with people who have experience and optimism, and give

> > > support. I'm starting to realize what to expect with this

> disease,

> > > and I don't like it. The doctors tell me that all cases are

> > > different, and symptoms vary as well.

> > >

> > > Since acknowledgement of this disease is just starting to sink

in

> > to

> > > me, I'm really scared about the future. I know most of you have

> > > probably experienced this too. There are just so many unknowns.

> > > Most days I feel " normal " and my hopes are high that I can

fight

> > > this. I've been noticing slight changes in how I feel

physically,

> > and

> > > that makes me even more nervous. I think these physical changes

> can

> > > sometimes be intensified by my anxiety, but then maybe I'm just

> > > hoping that is the case. I've been wondering why this has

> happened

> > to

> > > me. Those days of depression are hard to fight. I don't want to

> be

> > on

> > > oxygen, in a wheelchair, or not be on earth to enjoy my

> > grandchildren

> > > or be a companion for my husband and children. This is not how

my

> > > life at 55 was suppose to be!

> > >

> > > Does anyone know of any natural or herbal help available? I

want

> to

> > > pursue all avenues available and come to my next doctor's

> > appointment

> > > with more knowledge. At this point, I'm willing to try

anything.

> I

> > > started taking cellcept about a month ago. Prior to that, I was

> on

> > > aziathioprine but when my diffusing capacity went into the

> abnormal

> > > range, the Mayo dr. thought we should change that medication to

> see

> > > if a change would make a difference. I'm scheduled to revisit

> there

> > > in January, and may undergo a lung biopsy along with new

testing

> to

> > > see if there is a specific reason as to why this is happening.

In

> > the

> > > meantime, I wait. And worry. I know my life won't be " normal "

> > again.

> > > I'm just hoping that you with experience can give me some hope.

> > >

> > > gigi

> > >

> >

>

[Guest guest]

Thanks Gigi, so far so good and they are all very kind, on break from

tests until Noon...Wait until you hear this one..

sandie

> > >

> > > In March 2007 I was diagnosed with ILD. This was found through

a

> > > routine physical - no symptoms on my part and no knowledge by

me

> > that

> > > this disease even existed. The doctors still have some question

> on

> > > the cause, most likely connective tissue related. I am now on

> > > prednisone, slowly decreasing the dosage in an effort to get it

> > under

> > > control. Unfortunately, my last appointment indicated abnormal

> > > diffusing capacity, and we are now trying a different med to

turn

> > > that around. I am participating in local pulmonary rehab, and

> have

> > > regular pulmonary visits at Mayo Clinic, as well as with my

local

> > > physician.

> > >

> > > So much of what I have read on the internet has been very

> negative,

> > > but now I've found a couple of chatrooms like this where I can

> > > connect with people who have experience and optimism, and give

> > > support. I'm starting to realize what to expect with this

> disease,

> > > and I don't like it. The doctors tell me that all cases are

> > > different, and symptoms vary as well.

> > >

> > > Since acknowledgement of this disease is just starting to sink

in

> > to

> > > me, I'm really scared about the future. I know most of you have

> > > probably experienced this too. There are just so many unknowns.

> > > Most days I feel " normal " and my hopes are high that I can

fight

> > > this. I've been noticing slight changes in how I feel

physically,

> > and

> > > that makes me even more nervous. I think these physical changes

> can

> > > sometimes be intensified by my anxiety, but then maybe I'm just

> > > hoping that is the case. I've been wondering why this has

> happened

> > to

> > > me. Those days of depression are hard to fight. I don't want to

> be

> > on

> > > oxygen, in a wheelchair, or not be on earth to enjoy my

> > grandchildren

> > > or be a companion for my husband and children. This is not how

my

> > > life at 55 was suppose to be!

> > >

> > > Does anyone know of any natural or herbal help available? I

want

> to

> > > pursue all avenues available and come to my next doctor's

> > appointment

> > > with more knowledge. At this point, I'm willing to try

anything.

> I

> > > started taking cellcept about a month ago. Prior to that, I was

> on

> > > aziathioprine but when my diffusing capacity went into the

> abnormal

> > > range, the Mayo dr. thought we should change that medication to

> see

> > > if a change would make a difference. I'm scheduled to revisit

> there

> > > in January, and may undergo a lung biopsy along with new

testing

> to

> > > see if there is a specific reason as to why this is happening.

In

> > the

> > > meantime, I wait. And worry. I know my life won't be " normal "

> > again.

> > > I'm just hoping that you with experience can give me some hope.

> > >

> > > gigi

> > >

> >

>

[Guest guest]

Peggy good afternoon! My doc told me to cut the P(SP) in half for 5 days then stop!!!! So much for comming off slow! YES? I did the therpy thing this morning and believe they might help more than the docs! strange world these days! Well, trying some new interests today, building a model railroad for me, love creating stuff. stay safe & as well as possible!!!!

Re: Re: new subscriber - similar problems

Hi Buddy, You are weaning off under your dr.s direction right??? Prednison will most defiantly makeyou so sick. You need to talk to your Dr about that for sure.I am not on any medication either. My tx Dr. told me to take NAC for the mucus if I get it. other that thatI am doin my thing. I would love to tell you what that is but today I'm not to sure...Ox D..LOLTake care of you and y'all remember you aren't dyeing today so go do something.Go make some good memories.Love and Prayers, Peggyipf 6/04 Florida"Worry looks around,Sorry looks back,Faith looks up."gigi How well I know what your experiencing as I was told that Ihave Pulmonary Fibrosis in August this year. Its great you have theMayo clinic to help you. Still its those quiet times when your alonethat our minds take a wild run and have means to send us either

tothe "Why me?" or its ok, I'll be just fine! I am to begin pulmonaryrehab this morning and hope they can help as changes are occuringphysicially. I have decided a different way of treatment, to stop allmeds that have I adverse reactions to and also decided not to have alung bisopy because of what changes to benefit me would there be orwill it prolong my life. Anyway do take care, remain upbeat,positive, enjoy the small things of life! stay well as possible andbe safe! > > >> > > In March 2007 I was diagnosed with ILD. This was found througha> > > routine physical - no symptoms on my part and no knowledge byme> > that> > > this disease even existed. The doctors still have some question> on> > > the cause, most likely connective tissue related. I am now on> > > prednisone, slowly decreasing the dosage in an effort to get it> > under> > > control. Unfortunately, my last appointment indicated abnormal> > > diffusing capacity, and we are now trying a different med toturn> > > that around. I am participating in local pulmonary rehab, and> have> > > regular pulmonary visits at Mayo Clinic, as well as with mylocal>

> > physician.> > >> > > So much of what I have read on the internet has been very> negative,> > > but now I've found a couple of chatrooms like this where I can> > > connect with people who have experience and optimism, and give> > > support. I'm starting to realize what to expect with this> disease,> > > and I don't like it. The doctors tell me that all cases are> > > different, and symptoms vary as well.> > >> > > Since acknowledgement of this disease is just starting to sinkin> > to> > > me, I'm really scared about the future. I know most of you have> > > probably experienced this too. There are just so many unknowns.> > > Most days I feel "normal" and my hopes are high that I canfight> > > this. I've been noticing slight changes in how I

feelphysically,> > and> > > that makes me even more nervous. I think these physical changes> can> > > sometimes be intensified by my anxiety, but then maybe I'm just> > > hoping that is the case. I've been wondering why this has> happened> > to> > > me. Those days of depression are hard to fight. I don't want to> be> > on> > > oxygen, in a wheelchair, or not be on earth to enjoy my> > grandchildren> > > or be a companion for my husband and children. This is not howmy> > > life at 55 was suppose to be!> > >> > > Does anyone know of any natural or herbal help available? Iwant> to> > > pursue all avenues available and come to my next doctor's> > appointment> > > with more knowledge. At this point, I'm willing to

tryanything.> I> > > started taking cellcept about a month ago. Prior to that, I was> on> > > aziathioprine but when my diffusing capacity went into the> abnormal> > > range, the Mayo dr. thought we should change that medication to> see> > > if a change would make a difference. I'm scheduled to revisit> there> > > in January, and may undergo a lung biopsy along with newtesting> to> > > see if there is a specific reason as to why this is happening.In> > the> > > meantime, I wait. And worry. I know my life won't be "normal"> > again.> > > I'm just hoping that you with experience can give me some hope.> > >> > > gigi> > >> >>__________________________________________________

[Guest guest]

Peggy good afternoon! My doc told me to cut the P(SP) in half for 5 days then stop!!!! So much for comming off slow! YES? I did the therpy thing this morning and believe they might help more than the docs! strange world these days! Well, trying some new interests today, building a model railroad for me, love creating stuff. stay safe & as well as possible!!!!

Re: Re: new subscriber - similar problems

Hi Buddy, You are weaning off under your dr.s direction right??? Prednison will most defiantly makeyou so sick. You need to talk to your Dr about that for sure.I am not on any medication either. My tx Dr. told me to take NAC for the mucus if I get it. other that thatI am doin my thing. I would love to tell you what that is but today I'm not to sure...Ox D..LOLTake care of you and y'all remember you aren't dyeing today so go do something.Go make some good memories.Love and Prayers, Peggyipf 6/04 Florida"Worry looks around,Sorry looks back,Faith looks up."gigi How well I know what your experiencing as I was told that Ihave Pulmonary Fibrosis in August this year. Its great you have theMayo clinic to help you. Still its those quiet times when your alonethat our minds take a wild run and have means to send us either

tothe "Why me?" or its ok, I'll be just fine! I am to begin pulmonaryrehab this morning and hope they can help as changes are occuringphysicially. I have decided a different way of treatment, to stop allmeds that have I adverse reactions to and also decided not to have alung bisopy because of what changes to benefit me would there be orwill it prolong my life. Anyway do take care, remain upbeat,positive, enjoy the small things of life! stay well as possible andbe safe! > > >> > > In March 2007 I was diagnosed with ILD. This was found througha> > > routine physical - no symptoms on my part and no knowledge byme> > that> > > this disease even existed. The doctors still have some question> on> > > the cause, most likely connective tissue related. I am now on> > > prednisone, slowly decreasing the dosage in an effort to get it> > under> > > control. Unfortunately, my last appointment indicated abnormal> > > diffusing capacity, and we are now trying a different med toturn> > > that around. I am participating in local pulmonary rehab, and> have> > > regular pulmonary visits at Mayo Clinic, as well as with mylocal>

> > physician.> > >> > > So much of what I have read on the internet has been very> negative,> > > but now I've found a couple of chatrooms like this where I can> > > connect with people who have experience and optimism, and give> > > support. I'm starting to realize what to expect with this> disease,> > > and I don't like it. The doctors tell me that all cases are> > > different, and symptoms vary as well.> > >> > > Since acknowledgement of this disease is just starting to sinkin> > to> > > me, I'm really scared about the future. I know most of you have> > > probably experienced this too. There are just so many unknowns.> > > Most days I feel "normal" and my hopes are high that I canfight> > > this. I've been noticing slight changes in how I

feelphysically,> > and> > > that makes me even more nervous. I think these physical changes> can> > > sometimes be intensified by my anxiety, but then maybe I'm just> > > hoping that is the case. I've been wondering why this has> happened> > to> > > me. Those days of depression are hard to fight. I don't want to> be> > on> > > oxygen, in a wheelchair, or not be on earth to enjoy my> > grandchildren> > > or be a companion for my husband and children. This is not howmy> > > life at 55 was suppose to be!> > >> > > Does anyone know of any natural or herbal help available? Iwant> to> > > pursue all avenues available and come to my next doctor's> > appointment> > > with more knowledge. At this point, I'm willing to

tryanything.> I> > > started taking cellcept about a month ago. Prior to that, I was> on> > > aziathioprine but when my diffusing capacity went into the> abnormal> > > range, the Mayo dr. thought we should change that medication to> see> > > if a change would make a difference. I'm scheduled to revisit> there> > > in January, and may undergo a lung biopsy along with newtesting> to> > > see if there is a specific reason as to why this is happening.In> > the> > > meantime, I wait. And worry. I know my life won't be "normal"> > again.> > > I'm just hoping that you with experience can give me some hope.> > >> > > gigi> > >> >>__________________________________________________

[Guest guest]

Peggy good afternoon! My doc told me to cut the P(SP) in half for 5 days then stop!!!! So much for comming off slow! YES? I did the therpy thing this morning and believe they might help more than the docs! strange world these days! Well, trying some new interests today, building a model railroad for me, love creating stuff. stay safe & as well as possible!!!!

Re: Re: new subscriber - similar problems

Hi Buddy, You are weaning off under your dr.s direction right??? Prednison will most defiantly makeyou so sick. You need to talk to your Dr about that for sure.I am not on any medication either. My tx Dr. told me to take NAC for the mucus if I get it. other that thatI am doin my thing. I would love to tell you what that is but today I'm not to sure...Ox D..LOLTake care of you and y'all remember you aren't dyeing today so go do something.Go make some good memories.Love and Prayers, Peggyipf 6/04 Florida"Worry looks around,Sorry looks back,Faith looks up."gigi How well I know what your experiencing as I was told that Ihave Pulmonary Fibrosis in August this year. Its great you have theMayo clinic to help you. Still its those quiet times when your alonethat our minds take a wild run and have means to send us either

tothe "Why me?" or its ok, I'll be just fine! I am to begin pulmonaryrehab this morning and hope they can help as changes are occuringphysicially. I have decided a different way of treatment, to stop allmeds that have I adverse reactions to and also decided not to have alung bisopy because of what changes to benefit me would there be orwill it prolong my life. Anyway do take care, remain upbeat,positive, enjoy the small things of life! stay well as possible andbe safe! > > >> > > In March 2007 I was diagnosed with ILD. This was found througha> > > routine physical - no symptoms on my part and no knowledge byme> > that> > > this disease even existed. The doctors still have some question> on> > > the cause, most likely connective tissue related. I am now on> > > prednisone, slowly decreasing the dosage in an effort to get it> > under> > > control. Unfortunately, my last appointment indicated abnormal> > > diffusing capacity, and we are now trying a different med toturn> > > that around. I am participating in local pulmonary rehab, and> have> > > regular pulmonary visits at Mayo Clinic, as well as with mylocal>

> > physician.> > >> > > So much of what I have read on the internet has been very> negative,> > > but now I've found a couple of chatrooms like this where I can> > > connect with people who have experience and optimism, and give> > > support. I'm starting to realize what to expect with this> disease,> > > and I don't like it. The doctors tell me that all cases are> > > different, and symptoms vary as well.> > >> > > Since acknowledgement of this disease is just starting to sinkin> > to> > > me, I'm really scared about the future. I know most of you have> > > probably experienced this too. There are just so many unknowns.> > > Most days I feel "normal" and my hopes are high that I canfight> > > this. I've been noticing slight changes in how I

feelphysically,> > and> > > that makes me even more nervous. I think these physical changes> can> > > sometimes be intensified by my anxiety, but then maybe I'm just> > > hoping that is the case. I've been wondering why this has> happened> > to> > > me. Those days of depression are hard to fight. I don't want to> be> > on> > > oxygen, in a wheelchair, or not be on earth to enjoy my> > grandchildren> > > or be a companion for my husband and children. This is not howmy> > > life at 55 was suppose to be!> > >> > > Does anyone know of any natural or herbal help available? Iwant> to> > > pursue all avenues available and come to my next doctor's> > appointment> > > with more knowledge. At this point, I'm willing to

tryanything.> I> > > started taking cellcept about a month ago. Prior to that, I was> on> > > aziathioprine but when my diffusing capacity went into the> abnormal> > > range, the Mayo dr. thought we should change that medication to> see> > > if a change would make a difference. I'm scheduled to revisit> there> > > in January, and may undergo a lung biopsy along with newtesting> to> > > see if there is a specific reason as to why this is happening.In> > the> > > meantime, I wait. And worry. I know my life won't be "normal"> > again.> > > I'm just hoping that you with experience can give me some hope.> > >> > > gigi> > >> >>__________________________________________________

[Guest guest]

The members here can tell you more about cutting back than the Dr's I think.How many Mg are you on and how long have you been on "P" ? Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Peggy good afternoon! My doc told me to cut the P(SP) in half for 5 days then stop!!!! So much for comming off slow! YES? I did the therpy thing this morning and believe they might help more than the docs!  strange world these days! Well, trying some new interests today, building a model railroad for me, love creating stuff. stay safe & as well as possible!!!!   Re: Re: new subscriber - similar problemsHi Buddy, You are weaning off under your dr.s direction right??? Prednison will most defiantly makeyou so sick. You need to talk to your Dr about that for sure.I am not on any medication either. My tx Dr. told me to take NAC for the mucus if I get it. other that thatI am doin my thing. I would love to tell you what that is but today I'm not to sure...Ox D..LOLTake care of you and y'all remember you aren't dyeing today so go do something.Go make some good memories.Love and Prayers, Peggyipf 6/04 Florida"Worry looks around,Sorry looks back,Faith looks up."gigi How well I know what your experiencing as I was told that Ihave Pulmonary Fibrosis in August this year. Its great you have theMayo clinic to help you. Still its those quiet times when your alonethat our minds take a wild run and have means to send us either tothe "Why me?" or its ok, I'll be just fine! I am to begin pulmonaryrehab this morning and hope they can help as changes are occuringphysicially. I have decided a different way of treatment, to stop allmeds that have I adverse reactions to and also decided not to have alung bisopy because of what changes to benefit me would there be orwill it prolong my life. Anyway do take care, remain upbeat,positive, enjoy the small things of life! stay well as possible andbe safe! > > >> > > In March 2007 I was diagnosed with ILD. This was found througha> > > routine physical - no symptoms on my part and no knowledge byme> > that> > > this disease even existed. The doctors still have some question> on> > > the cause, most likely connective tissue related. I am now on> > > prednisone, slowly decreasing the dosage in an effort to get it> > under> > > control. Unfortunately, my last appointment indicated abnormal> > > diffusing capacity, and we are now trying a different med toturn> > > that around. I am participating in local pulmonary rehab, and> have> > > regular pulmonary visits at Mayo Clinic, as well as with mylocal> > > physician.> > >> > > So much of what I have read on the internet has been very> negative,> > > but now I've found a couple of chatrooms like this where I can> > > connect with people who have experience and optimism, and give> > > support. I'm starting to realize what to expect with this> disease,> > > and I don't like it. The doctors tell me that all cases are> > > different, and symptoms vary as well.> > >> > > Since acknowledgement of this disease is just starting to sinkin> > to> > > me, I'm really scared about the future. I know most of you have> > > probably experienced this too. There are just so many unknowns.> > > Most days I feel "normal" and my hopes are high that I canfight> > > this. I've been noticing slight changes in how I feelphysically,> > and> > > that makes me even more nervous. I think these physical changes> can> > > sometimes be intensified by my anxiety, but then maybe I'm just> > > hoping that is the case. I've been wondering why this has> happened> > to> > > me. Those days of depression are hard to fight. I don't want to> be> > on> > > oxygen, in a wheelchair, or not be on earth to enjoy my> > grandchildren> > > or be a companion for my husband and children. This is not howmy> > > life at 55 was suppose to be!> > >> > > Does anyone know of any natural or herbal help available? Iwant> to> > > pursue all avenues available and come to my next doctor's> > appointment> > > with more knowledge. At this point, I'm willing to tryanything.> I> > > started taking cellcept about a month ago. Prior to that, I was> on> > > aziathioprine but when my diffusing capacity went into the> abnormal> > > range, the Mayo dr. thought we should change that medication to> see> > > if a change would make a difference. I'm scheduled to revisit> there> > > in January, and may undergo a lung biopsy along with newtesting> to> > > see if there is a specific reason as to why this is happening.In> > the> > > meantime, I wait. And worry. I know my life won't be "normal"> > again.> > > I'm just hoping that you with experience can give me some hope.> > >> > > gigi> > >> >>__________________________________________________

[Guest guest]

The members here can tell you more about cutting back than the Dr's I think.How many Mg are you on and how long have you been on "P" ? Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Peggy good afternoon! My doc told me to cut the P(SP) in half for 5 days then stop!!!! So much for comming off slow! YES? I did the therpy thing this morning and believe they might help more than the docs!  strange world these days! Well, trying some new interests today, building a model railroad for me, love creating stuff. stay safe & as well as possible!!!!   Re: Re: new subscriber - similar problemsHi Buddy, You are weaning off under your dr.s direction right??? Prednison will most defiantly makeyou so sick. You need to talk to your Dr about that for sure.I am not on any medication either. My tx Dr. told me to take NAC for the mucus if I get it. other that thatI am doin my thing. I would love to tell you what that is but today I'm not to sure...Ox D..LOLTake care of you and y'all remember you aren't dyeing today so go do something.Go make some good memories.Love and Prayers, Peggyipf 6/04 Florida"Worry looks around,Sorry looks back,Faith looks up."gigi How well I know what your experiencing as I was told that Ihave Pulmonary Fibrosis in August this year. Its great you have theMayo clinic to help you. Still its those quiet times when your alonethat our minds take a wild run and have means to send us either tothe "Why me?" or its ok, I'll be just fine! I am to begin pulmonaryrehab this morning and hope they can help as changes are occuringphysicially. I have decided a different way of treatment, to stop allmeds that have I adverse reactions to and also decided not to have alung bisopy because of what changes to benefit me would there be orwill it prolong my life. Anyway do take care, remain upbeat,positive, enjoy the small things of life! stay well as possible andbe safe! > > >> > > In March 2007 I was diagnosed with ILD. This was found througha> > > routine physical - no symptoms on my part and no knowledge byme> > that> > > this disease even existed. The doctors still have some question> on> > > the cause, most likely connective tissue related. I am now on> > > prednisone, slowly decreasing the dosage in an effort to get it> > under> > > control. Unfortunately, my last appointment indicated abnormal> > > diffusing capacity, and we are now trying a different med toturn> > > that around. I am participating in local pulmonary rehab, and> have> > > regular pulmonary visits at Mayo Clinic, as well as with mylocal> > > physician.> > >> > > So much of what I have read on the internet has been very> negative,> > > but now I've found a couple of chatrooms like this where I can> > > connect with people who have experience and optimism, and give> > > support. I'm starting to realize what to expect with this> disease,> > > and I don't like it. The doctors tell me that all cases are> > > different, and symptoms vary as well.> > >> > > Since acknowledgement of this disease is just starting to sinkin> > to> > > me, I'm really scared about the future. I know most of you have> > > probably experienced this too. There are just so many unknowns.> > > Most days I feel "normal" and my hopes are high that I canfight> > > this. I've been noticing slight changes in how I feelphysically,> > and> > > that makes me even more nervous. I think these physical changes> can> > > sometimes be intensified by my anxiety, but then maybe I'm just> > > hoping that is the case. I've been wondering why this has> happened> > to> > > me. Those days of depression are hard to fight. I don't want to> be> > on> > > oxygen, in a wheelchair, or not be on earth to enjoy my> > grandchildren> > > or be a companion for my husband and children. This is not howmy> > > life at 55 was suppose to be!> > >> > > Does anyone know of any natural or herbal help available? Iwant> to> > > pursue all avenues available and come to my next doctor's> > appointment> > > with more knowledge. At this point, I'm willing to tryanything.> I> > > started taking cellcept about a month ago. Prior to that, I was> on> > > aziathioprine but when my diffusing capacity went into the> abnormal> > > range, the Mayo dr. thought we should change that medication to> see> > > if a change would make a difference. I'm scheduled to revisit> there> > > in January, and may undergo a lung biopsy along with newtesting> to> > > see if there is a specific reason as to why this is happening.In> > the> > > meantime, I wait. And worry. I know my life won't be "normal"> > again.> > > I'm just hoping that you with experience can give me some hope.> > >> > > gigi> > >> >>__________________________________________________

[Guest guest]

I forgot to add " I hate prednisone.  lol Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Peggy good afternoon! My doc told me to cut the P(SP) in half for 5 days then stop!!!! So much for comming off slow! YES? I did the therpy thing this morning and believe they might help more than the docs!  strange world these days! Well, trying some new interests today, building a model railroad for me, love creating stuff. stay safe & as well as possible!!!!   Re: Re: new subscriber - similar problemsHi Buddy, You are weaning off under your dr.s direction right??? Prednison will most defiantly makeyou so sick. You need to talk to your Dr about that for sure.I am not on any medication either. My tx Dr. told me to take NAC for the mucus if I get it. other that thatI am doin my thing. I would love to tell you what that is but today I'm not to sure...Ox D..LOLTake care of you and y'all remember you aren't dyeing today so go do something.Go make some good memories.Love and Prayers, Peggyipf 6/04 Florida"Worry looks around,Sorry looks back,Faith looks up."gigi How well I know what your experiencing as I was told that Ihave Pulmonary Fibrosis in August this year. Its great you have theMayo clinic to help you. Still its those quiet times when your alonethat our minds take a wild run and have means to send us either tothe "Why me?" or its ok, I'll be just fine! I am to begin pulmonaryrehab this morning and hope they can help as changes are occuringphysicially. I have decided a different way of treatment, to stop allmeds that have I adverse reactions to and also decided not to have alung bisopy because of what changes to benefit me would there be orwill it prolong my life. Anyway do take care, remain upbeat,positive, enjoy the small things of life! stay well as possible andbe safe! > > >> > > In March 2007 I was diagnosed with ILD. This was found througha> > > routine physical - no symptoms on my part and no knowledge byme> > that> > > this disease even existed. The doctors still have some question> on> > > the cause, most likely connective tissue related. I am now on> > > prednisone, slowly decreasing the dosage in an effort to get it> > under> > > control. Unfortunately, my last appointment indicated abnormal> > > diffusing capacity, and we are now trying a different med toturn> > > that around. I am participating in local pulmonary rehab, and> have> > > regular pulmonary visits at Mayo Clinic, as well as with mylocal> > > physician.> > >> > > So much of what I have read on the internet has been very> negative,> > > but now I've found a couple of chatrooms like this where I can> > > connect with people who have experience and optimism, and give> > > support. I'm starting to realize what to expect with this> disease,> > > and I don't like it. The doctors tell me that all cases are> > > different, and symptoms vary as well.> > >> > > Since acknowledgement of this disease is just starting to sinkin> > to> > > me, I'm really scared about the future. I know most of you have> > > probably experienced this too. There are just so many unknowns.> > > Most days I feel "normal" and my hopes are high that I canfight> > > this. I've been noticing slight changes in how I feelphysically,> > and> > > that makes me even more nervous. I think these physical changes> can> > > sometimes be intensified by my anxiety, but then maybe I'm just> > > hoping that is the case. I've been wondering why this has> happened> > to> > > me. Those days of depression are hard to fight. I don't want to> be> > on> > > oxygen, in a wheelchair, or not be on earth to enjoy my> > grandchildren> > > or be a companion for my husband and children. This is not howmy> > > life at 55 was suppose to be!> > >> > > Does anyone know of any natural or herbal help available? Iwant> to> > > pursue all avenues available and come to my next doctor's> > appointment> > > with more knowledge. At this point, I'm willing to tryanything.> I> > > started taking cellcept about a month ago. Prior to that, I was> on> > > aziathioprine but when my diffusing capacity went into the> abnormal> > > range, the Mayo dr. thought we should change that medication to> see> > > if a change would make a difference. I'm scheduled to revisit> there> > > in January, and may undergo a lung biopsy along with newtesting> to> > > see if there is a specific reason as to why this is happening.In> > the> > > meantime, I wait. And worry. I know my life won't be "normal"> > again.> > > I'm just hoping that you with experience can give me some hope.> > >> > > gigi> > >> >>__________________________________________________

[Guest guest]

I forgot to add " I hate prednisone.  lol Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Peggy good afternoon! My doc told me to cut the P(SP) in half for 5 days then stop!!!! So much for comming off slow! YES? I did the therpy thing this morning and believe they might help more than the docs!  strange world these days! Well, trying some new interests today, building a model railroad for me, love creating stuff. stay safe & as well as possible!!!!   Re: Re: new subscriber - similar problemsHi Buddy, You are weaning off under your dr.s direction right??? Prednison will most defiantly makeyou so sick. You need to talk to your Dr about that for sure.I am not on any medication either. My tx Dr. told me to take NAC for the mucus if I get it. other that thatI am doin my thing. I would love to tell you what that is but today I'm not to sure...Ox D..LOLTake care of you and y'all remember you aren't dyeing today so go do something.Go make some good memories.Love and Prayers, Peggyipf 6/04 Florida"Worry looks around,Sorry looks back,Faith looks up."gigi How well I know what your experiencing as I was told that Ihave Pulmonary Fibrosis in August this year. Its great you have theMayo clinic to help you. Still its those quiet times when your alonethat our minds take a wild run and have means to send us either tothe "Why me?" or its ok, I'll be just fine! I am to begin pulmonaryrehab this morning and hope they can help as changes are occuringphysicially. I have decided a different way of treatment, to stop allmeds that have I adverse reactions to and also decided not to have alung bisopy because of what changes to benefit me would there be orwill it prolong my life. Anyway do take care, remain upbeat,positive, enjoy the small things of life! stay well as possible andbe safe! > > >> > > In March 2007 I was diagnosed with ILD. This was found througha> > > routine physical - no symptoms on my part and no knowledge byme> > that> > > this disease even existed. The doctors still have some question> on> > > the cause, most likely connective tissue related. I am now on> > > prednisone, slowly decreasing the dosage in an effort to get it> > under> > > control. Unfortunately, my last appointment indicated abnormal> > > diffusing capacity, and we are now trying a different med toturn> > > that around. I am participating in local pulmonary rehab, and> have> > > regular pulmonary visits at Mayo Clinic, as well as with mylocal> > > physician.> > >> > > So much of what I have read on the internet has been very> negative,> > > but now I've found a couple of chatrooms like this where I can> > > connect with people who have experience and optimism, and give> > > support. I'm starting to realize what to expect with this> disease,> > > and I don't like it. The doctors tell me that all cases are> > > different, and symptoms vary as well.> > >> > > Since acknowledgement of this disease is just starting to sinkin> > to> > > me, I'm really scared about the future. I know most of you have> > > probably experienced this too. There are just so many unknowns.> > > Most days I feel "normal" and my hopes are high that I canfight> > > this. I've been noticing slight changes in how I feelphysically,> > and> > > that makes me even more nervous. I think these physical changes> can> > > sometimes be intensified by my anxiety, but then maybe I'm just> > > hoping that is the case. I've been wondering why this has> happened> > to> > > me. Those days of depression are hard to fight. I don't want to> be> > on> > > oxygen, in a wheelchair, or not be on earth to enjoy my> > grandchildren> > > or be a companion for my husband and children. This is not howmy> > > life at 55 was suppose to be!> > >> > > Does anyone know of any natural or herbal help available? Iwant> to> > > pursue all avenues available and come to my next doctor's> > appointment> > > with more knowledge. At this point, I'm willing to tryanything.> I> > > started taking cellcept about a month ago. Prior to that, I was> on> > > aziathioprine but when my diffusing capacity went into the> abnormal> > > range, the Mayo dr. thought we should change that medication to> see> > > if a change would make a difference. I'm scheduled to revisit> there> > > in January, and may undergo a lung biopsy along with newtesting> to> > > see if there is a specific reason as to why this is happening.In> > the> > > meantime, I wait. And worry. I know my life won't be "normal"> > again.> > > I'm just hoping that you with experience can give me some hope.> > >> > > gigi> > >> >>__________________________________________________

[Guest guest]

just 10 days at 30mg, and I was without sleep the entire time and my bp was high for me. I'm sure thats correct!

Re: Re: new subscriber - similar problems

Hi Buddy, You are weaning off under your dr.s direction right??? Prednison will most defiantly makeyou so sick. You need to talk to your Dr about that for sure.I am not on any medication either. My tx Dr. told me to take NAC for the mucus if I get it. other that thatI am doin my thing. I would love to tell you what that is but today I'm not to sure...Ox D..LOLTake care of you and y'all remember you aren't dyeing today so go do something.Go make some good memories.Love and Prayers, Peggyipf 6/04 Florida"Worry looks around,Sorry looks back,Faith looks up."gigi How well I know what your experiencing as I was told that Ihave Pulmonary Fibrosis in August this year. Its great you have theMayo clinic to help you. Still its those quiet times when your alonethat our minds take a wild run and have means to send us either tothe "Why me?" or its ok, I'll be just fine! I am to begin pulmonaryrehab this morning and hope they can help as changes are occuringphysicially. I have decided a different way of treatment, to stop allmeds that have I adverse reactions to and also decided not to have alung bisopy because of what changes to benefit me would there be orwill it prolong my life. Anyway do take care,

remain upbeat,positive, enjoy the small things of life! stay well as possible andbe safe! > > >> > > In March 2007 I was diagnosed with ILD.

This was found througha> > > routine physical - no symptoms on my part and no knowledge byme> > that> > > this disease even existed. The doctors still have some question> on> > > the cause, most likely connective tissue related. I am now on> > > prednisone, slowly decreasing the dosage in an effort to get it> > under> > > control. Unfortunately, my last appointment indicated abnormal> > > diffusing

capacity, and we are now trying a different med toturn> > > that around. I am participating in local pulmonary rehab, and> have> > > regular pulmonary visits at Mayo Clinic, as well as with mylocal> > > physician.> > >> > > So much of what I have read on the internet has been very> negative,> > > but now I've found a couple of chatrooms like this where I can> > > connect with people who have experience and

optimism, and give> > > support. I'm starting to realize what to expect with this> disease,> > > and I don't like it. The doctors tell me that all cases are> > > different, and symptoms vary as well.> > >> > > Since acknowledgement of this disease is just starting to sinkin> > to> > > me, I'm really scared about the future. I know most of you have> > > probably experienced this too. There are just so many unknowns.> > > Most days I feel "normal" and my hopes are high that I canfight> > > this. I've been noticing slight changes in how I feelphysically,> > and> > > that makes me even more nervous. I think these physical changes> can> > > sometimes be intensified by my anxiety, but then maybe I'm just> > > hoping that is the case. I've been wondering why this has> happened> > to> > > me. Those days of

depression are hard to fight. I don't want to> be> > on> > > oxygen, in a wheelchair, or not be on earth to enjoy my> > grandchildren> > > or be a companion for my husband and children. This is not howmy> > > life at 55 was suppose to be!> > >> > > Does anyone know of any natural or herbal help available? Iwant> to> > > pursue all avenues available and come to my next doctor's> > appointment> > > with more knowledge. At this point, I'm willing to tryanything.> I> > > started taking cellcept about a month ago. Prior to that, I

was> on> > > aziathioprine but when my diffusing capacity went into the> abnormal> > > range, the Mayo dr. thought we should change that medication to> see> > > if a change would make a difference. I'm scheduled to revisit> there> > > in January, and may undergo a lung biopsy along with newtesting> to> > > see if there is a specific reason as to why this is happening.In> > the> > > meantime, I wait. And worry. I know my life won't be "normal"> > again.> > > I'm just hoping that you with experience can give me some hope.> > >> > > gigi> > >> >>__________________________________________________

[Guest guest]

just 10 days at 30mg, and I was without sleep the entire time and my bp was high for me. I'm sure thats correct!

Re: Re: new subscriber - similar problems

Hi Buddy, You are weaning off under your dr.s direction right??? Prednison will most defiantly makeyou so sick. You need to talk to your Dr about that for sure.I am not on any medication either. My tx Dr. told me to take NAC for the mucus if I get it. other that thatI am doin my thing. I would love to tell you what that is but today I'm not to sure...Ox D..LOLTake care of you and y'all remember you aren't dyeing today so go do something.Go make some good memories.Love and Prayers, Peggyipf 6/04 Florida"Worry looks around,Sorry looks back,Faith looks up."gigi How well I know what your experiencing as I was told that Ihave Pulmonary Fibrosis in August this year. Its great you have theMayo clinic to help you. Still its those quiet times when your alonethat our minds take a wild run and have means to send us either tothe "Why me?" or its ok, I'll be just fine! I am to begin pulmonaryrehab this morning and hope they can help as changes are occuringphysicially. I have decided a different way of treatment, to stop allmeds that have I adverse reactions to and also decided not to have alung bisopy because of what changes to benefit me would there be orwill it prolong my life. Anyway do take care,

remain upbeat,positive, enjoy the small things of life! stay well as possible andbe safe! > > >> > > In March 2007 I was diagnosed with ILD.

This was found througha> > > routine physical - no symptoms on my part and no knowledge byme> > that> > > this disease even existed. The doctors still have some question> on> > > the cause, most likely connective tissue related. I am now on> > > prednisone, slowly decreasing the dosage in an effort to get it> > under> > > control. Unfortunately, my last appointment indicated abnormal> > > diffusing

capacity, and we are now trying a different med toturn> > > that around. I am participating in local pulmonary rehab, and> have> > > regular pulmonary visits at Mayo Clinic, as well as with mylocal> > > physician.> > >> > > So much of what I have read on the internet has been very> negative,> > > but now I've found a couple of chatrooms like this where I can> > > connect with people who have experience and

optimism, and give> > > support. I'm starting to realize what to expect with this> disease,> > > and I don't like it. The doctors tell me that all cases are> > > different, and symptoms vary as well.> > >> > > Since acknowledgement of this disease is just starting to sinkin> > to> > > me, I'm really scared about the future. I know most of you have> > > probably experienced this too. There are just so many unknowns.> > > Most days I feel "normal" and my hopes are high that I canfight> > > this. I've been noticing slight changes in how I feelphysically,> > and> > > that makes me even more nervous. I think these physical changes> can> > > sometimes be intensified by my anxiety, but then maybe I'm just> > > hoping that is the case. I've been wondering why this has> happened> > to> > > me. Those days of

depression are hard to fight. I don't want to> be> > on> > > oxygen, in a wheelchair, or not be on earth to enjoy my> > grandchildren> > > or be a companion for my husband and children. This is not howmy> > > life at 55 was suppose to be!> > >> > > Does anyone know of any natural or herbal help available? Iwant> to> > > pursue all avenues available and come to my next doctor's> > appointment> > > with more knowledge. At this point, I'm willing to tryanything.> I> > > started taking cellcept about a month ago. Prior to that, I

was> on> > > aziathioprine but when my diffusing capacity went into the> abnormal> > > range, the Mayo dr. thought we should change that medication to> see> > > if a change would make a difference. I'm scheduled to revisit> there> > > in January, and may undergo a lung biopsy along with newtesting> to> > > see if there is a specific reason as to why this is happening.In> > the> > > meantime, I wait. And worry. I know my life won't be "normal"> > again.> > > I'm just hoping that you with experience can give me some hope.> > >> > > gigi> > >> >>__________________________________________________

[Guest guest]

Hi ...just want to tell you (not that it matters a lot) that my husband is a model rr. HO scale...keeps him busy!

Arthritis took my hobbies....

Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there!

[Guest guest]

Hi ...just want to tell you (not that it matters a lot) that my husband is a model rr. HO scale...keeps him busy!

Arthritis took my hobbies....

Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there!

[Guest guest]

Sher It does matter at least to me as a model HO rr. Glad to hear of others such as I. Well, yesterday was my 1st visit to the hospital's Pulmonary therapy lab. I took their 6 1/2 min walking test, not sure what all the numbers meant. Ask them if they could help improve my quality of life, they said yes. We'll see! My wife & I meet with my PF doctor this pm. I'll state my way and am sure he will do the same. My oldest daughter( a RN) also has asked to be present. I have many questions and hope he has his listening ears turned on! HA! Had a couple scary minutes with my portable oxygen twice in the last few days. Seems I was ok till I sat down and then couldn't get my breath, of course being scared didn't help!! Have quite a bit of work to do on that. Glad to have this group to hear

& listen to, helps so much. This thing we have to deal with isn't much fun thats for sure. If I sound weird on my thoughts, sorry, but I refuse to allow this illness to take me down! I know(as well as we all do) what the final result is, but we all need to make the best of each minute we have, Yes? Stay well, stay safe, do something kind for you today!!!! (Buddy)

Re: Re: new subscriber - similar problems

Hi ...just want to tell you (not that it matters a lot) that my husband is a model rr. HO scale...keeps him busy!

Arthritis took my hobbies....

Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there!__________________________________________________

[Guest guest]

Sher It does matter at least to me as a model HO rr. Glad to hear of others such as I. Well, yesterday was my 1st visit to the hospital's Pulmonary therapy lab. I took their 6 1/2 min walking test, not sure what all the numbers meant. Ask them if they could help improve my quality of life, they said yes. We'll see! My wife & I meet with my PF doctor this pm. I'll state my way and am sure he will do the same. My oldest daughter( a RN) also has asked to be present. I have many questions and hope he has his listening ears turned on! HA! Had a couple scary minutes with my portable oxygen twice in the last few days. Seems I was ok till I sat down and then couldn't get my breath, of course being scared didn't help!! Have quite a bit of work to do on that. Glad to have this group to hear

& listen to, helps so much. This thing we have to deal with isn't much fun thats for sure. If I sound weird on my thoughts, sorry, but I refuse to allow this illness to take me down! I know(as well as we all do) what the final result is, but we all need to make the best of each minute we have, Yes? Stay well, stay safe, do something kind for you today!!!! (Buddy)

Re: Re: new subscriber - similar problems

Hi ...just want to tell you (not that it matters a lot) that my husband is a model rr. HO scale...keeps him busy!

Arthritis took my hobbies....

Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there!__________________________________________________

[Guest guest]

Sher It does matter at least to me as a model HO rr. Glad to hear of others such as I. Well, yesterday was my 1st visit to the hospital's Pulmonary therapy lab. I took their 6 1/2 min walking test, not sure what all the numbers meant. Ask them if they could help improve my quality of life, they said yes. We'll see! My wife & I meet with my PF doctor this pm. I'll state my way and am sure he will do the same. My oldest daughter( a RN) also has asked to be present. I have many questions and hope he has his listening ears turned on! HA! Had a couple scary minutes with my portable oxygen twice in the last few days. Seems I was ok till I sat down and then couldn't get my breath, of course being scared didn't help!! Have quite a bit of work to do on that. Glad to have this group to hear

& listen to, helps so much. This thing we have to deal with isn't much fun thats for sure. If I sound weird on my thoughts, sorry, but I refuse to allow this illness to take me down! I know(as well as we all do) what the final result is, but we all need to make the best of each minute we have, Yes? Stay well, stay safe, do something kind for you today!!!! (Buddy)

Re: Re: new subscriber - similar problems

Hi ...just want to tell you (not that it matters a lot) that my husband is a model rr. HO scale...keeps him busy!

Arthritis took my hobbies....

Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there!__________________________________________________

[Guest guest]

, My husband of 42 years and

counting is a HO railroad nut too!!!

He has a huge layout in the basement with several of his hand made

engines...now he justs have to figure out how to get the entire thing

out of this basement and into the next one in January when we move to a

ranch style house!

Z fibriotic NSIP/05

Z

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

Potter,

reader,carousel lover and MomMom to

Darah

“I’m gonna

be iron like a lion in Zion” Bob Marley

george mathews wrote:

Sher

It does matter at least to me as a model HO rr. Glad to hear of others

such as I. Well, yesterday was my 1st visit to the hospital's Pulmonary

therapy lab. I took their 6 1/2 min walking test, not sure what all the

numbers meant. Ask them if they could help improve my quality of life,

they said yes. We'll see! My wife & I meet with my PF doctor this

pm. I'll state my way and am sure he will do the same. My oldest

daughter( a RN) also has asked to be present. I have many questions and

hope he has his listening ears turned on! HA! Had a couple scary

minutes with my portable oxygen twice in the last few days. Seems I was

ok till I sat down and then couldn't get my breath, of course being

scared didn't help!! Have quite a bit of work to do on that. Glad to

have this group to hear & listen to, helps so much. This thing we

have to deal with isn't much fun thats for sure. If I sound weird on my

thoughts, sorry, but I refuse to allow this illness to take me down! I

know(as well as we all do) what the final result is, but we all need to

make the best of each minute we have, Yes? Stay well, stay safe, do

something kind for you today!!!! (Buddy)

-----

Original Message ----

From: Sher Bauman <bofuswbcable (DOT) net>

To: Breathe-Support

Sent: Tuesday, November 6, 2007 2:24:17 PM

Subject: Re: Re: new subscriber - similar problems

Hi

...just want to tell you (not that it matters a lot) that my

husband is a model rr. HO scale...keeps him busy!

Arthritis

took my hobbies....

Sher;

ipf 3-06; OR.

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

__________________________________________________

[Guest guest]

,

It is not unusual for patients with restrictive lung disease (such as PF) to have a drop in saturation rate upon stopping activity to rest. Mine always does. If I feel my 02 dropping, I snap on the oximeter and sit. It will always drop a few points before starting to go back up.

My doc told the last week that every time my 02 sat. dropped that I should rest for 1/2 hour. I wander how many hours are in his day. ??????

You are so blessed to have a daughter who is an RN. Maybe this can be the pay back for her college costs, huh? Hope she takes good care of you. Most of us here get copies of records and tests. It is very good to take charge and manage your own healthcare.

God's Blessings,

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Sher It does matter at least to me as a model HO rr. Glad to hear of others such as I. Well, yesterday was my 1st visit to the hospital's Pulmonary therapy lab. I took their 6 1/2 min walking test, not sure what all the numbers meant. Ask them if they could help improve my quality of life, they said yes. We'll see! My wife & I meet with my PF doctor this pm. I'll state my way and am sure he will do the same. My oldest daughter( a RN) also has asked to be present. I have many questions and hope he has his listening ears turned on! HA! Had a couple scary minutes with my portable oxygen twice in the last few days. Seems I was ok till I sat down and then couldn't get my breath, of course being scared didn't help!! Have quite a bit of work to do on that. Glad to have this group to hear & listen to, helps so much. This thing we have to deal with isn't much fun thats for sure. If I sound weird on my thoughts, sorry, but I refuse to allow this illness to take> me down! I know(as well as we all do) what the final result is, but we all need to make the best of each minute we have, Yes? Stay well, stay safe, do something kind for you today!!!! (Buddy)> > > > Re: Re: new subscriber - similar problems> > Hi ...just want to tell you (not that it matters a lot) that my husband is a model rr. HO scale...keeps him busy!> Arthritis took my hobbies....> Sher; ipf 3-06; OR.> Don't fret about tomorrow, God is already there!> > > __________________________________________________>

[Guest guest]

,

It is not unusual for patients with restrictive lung disease (such as PF) to have a drop in saturation rate upon stopping activity to rest. Mine always does. If I feel my 02 dropping, I snap on the oximeter and sit. It will always drop a few points before starting to go back up.

My doc told the last week that every time my 02 sat. dropped that I should rest for 1/2 hour. I wander how many hours are in his day. ??????

You are so blessed to have a daughter who is an RN. Maybe this can be the pay back for her college costs, huh? Hope she takes good care of you. Most of us here get copies of records and tests. It is very good to take charge and manage your own healthcare.

God's Blessings,

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Sher It does matter at least to me as a model HO rr. Glad to hear of others such as I. Well, yesterday was my 1st visit to the hospital's Pulmonary therapy lab. I took their 6 1/2 min walking test, not sure what all the numbers meant. Ask them if they could help improve my quality of life, they said yes. We'll see! My wife & I meet with my PF doctor this pm. I'll state my way and am sure he will do the same. My oldest daughter( a RN) also has asked to be present. I have many questions and hope he has his listening ears turned on! HA! Had a couple scary minutes with my portable oxygen twice in the last few days. Seems I was ok till I sat down and then couldn't get my breath, of course being scared didn't help!! Have quite a bit of work to do on that. Glad to have this group to hear & listen to, helps so much. This thing we have to deal with isn't much fun thats for sure. If I sound weird on my thoughts, sorry, but I refuse to allow this illness to take> me down! I know(as well as we all do) what the final result is, but we all need to make the best of each minute we have, Yes? Stay well, stay safe, do something kind for you today!!!! (Buddy)> > > > Re: Re: new subscriber - similar problems> > Hi ...just want to tell you (not that it matters a lot) that my husband is a model rr. HO scale...keeps him busy!> Arthritis took my hobbies....> Sher; ipf 3-06; OR.> Don't fret about tomorrow, God is already there!> > > __________________________________________________>

[Guest guest]

...right now I'm not on any O2. Keep posting and those who are can give you endless help and suggestions.

It's good you have support from your wife and daughter. It takes awhile to mow through all the questions and then more questions about the answers you get. For me, denial was difficult to break through. I finally "settled in" to this disease but not until I asked tons of questions. It's a good thing questions are limited to a number! hehe

God be with you today.

Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there!

[Guest guest]

...right now I'm not on any O2. Keep posting and those who are can give you endless help and suggestions.

It's good you have support from your wife and daughter. It takes awhile to mow through all the questions and then more questions about the answers you get. For me, denial was difficult to break through. I finally "settled in" to this disease but not until I asked tons of questions. It's a good thing questions are limited to a number! hehe

God be with you today.

Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there!

[Guest guest]

...right now I'm not on any O2. Keep posting and those who are can give you endless help and suggestions.

It's good you have support from your wife and daughter. It takes awhile to mow through all the questions and then more questions about the answers you get. For me, denial was difficult to break through. I finally "settled in" to this disease but not until I asked tons of questions. It's a good thing questions are limited to a number! hehe

God be with you today.

Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there!

[Guest guest]

Just another reason I wouldn't be without my oximeter. Have been

shocked sometimes it drops or doesn't. I remember first times I would

come in from activity, walk, head to the sofa (all the time on oxygen

with 95% or so), then sit and think now I can remove it for a bit,

but shockingly saw it drop still on the oxygen. So, I learned, a few

minutes more of oxygen so it would build back up before the

possibility of sitting without.

I think some of it is breathing habits too I'm still working on. I

find I take good breaths walking in and its like when I first sit i

forget I need deep breaths. I have pulled out my oximeter and watched

how just by changing the way I'm breathing I can push the numbers up.

Bruce Moreland 58 IPF 08/07 Dallas/Plano

> >

> > Sher It does matter at least to me as a model HO rr. Glad to hear

of

> others such as I. Well, yesterday was my 1st visit to the hospital's

> Pulmonary therapy lab. I took their 6 1/2 min walking test, not sure

> what all the numbers meant. Ask them if they could help improve my

> quality of life, they said yes. We'll see! My wife & I meet with my

PF

> doctor this pm. I'll state my way and am sure he will do the same.

My

> oldest daughter( a RN) also has asked to be present. I have many

> questions and hope he has his listening ears turned on! HA! Had a

couple

> scary minutes with my portable oxygen twice in the last few days.

Seems

> I was ok till I sat down and then couldn't get my breath, of course

> being scared didn't help!! Have quite a bit of work to do on that.

Glad

> to have this group to hear & listen to, helps so much. This thing we

> have to deal with isn't much fun thats for sure. If I sound weird

on my

> thoughts, sorry, but I refuse to allow this illness to take

> > me down! I know(as well as we all do) what the final result is,

but we

> all need to make the best of each minute we have, Yes? Stay well,

stay

> safe, do something kind for you today!!!! (Buddy)

> >

> >

> >

> > Re: Re: new subscriber - similar

problems

> >

> > Hi ...just want to tell you (not that it matters a lot)

that my

> husband is a model rr. HO scale...keeps him busy!

> > Arthritis took my hobbies....

> > Sher; ipf 3-06; OR.

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

> >

> >

> > __________________________________________________

> >

[Guest guest]

Just another reason I wouldn't be without my oximeter. Have been

shocked sometimes it drops or doesn't. I remember first times I would

come in from activity, walk, head to the sofa (all the time on oxygen

with 95% or so), then sit and think now I can remove it for a bit,

but shockingly saw it drop still on the oxygen. So, I learned, a few

minutes more of oxygen so it would build back up before the

possibility of sitting without.

I think some of it is breathing habits too I'm still working on. I

find I take good breaths walking in and its like when I first sit i

forget I need deep breaths. I have pulled out my oximeter and watched

how just by changing the way I'm breathing I can push the numbers up.

Bruce Moreland 58 IPF 08/07 Dallas/Plano

> >

> > Sher It does matter at least to me as a model HO rr. Glad to hear

of

> others such as I. Well, yesterday was my 1st visit to the hospital's

> Pulmonary therapy lab. I took their 6 1/2 min walking test, not sure

> what all the numbers meant. Ask them if they could help improve my

> quality of life, they said yes. We'll see! My wife & I meet with my

PF

> doctor this pm. I'll state my way and am sure he will do the same.

My

> oldest daughter( a RN) also has asked to be present. I have many

> questions and hope he has his listening ears turned on! HA! Had a

couple

> scary minutes with my portable oxygen twice in the last few days.

Seems

> I was ok till I sat down and then couldn't get my breath, of course

> being scared didn't help!! Have quite a bit of work to do on that.

Glad

> to have this group to hear & listen to, helps so much. This thing we

> have to deal with isn't much fun thats for sure. If I sound weird

on my

> thoughts, sorry, but I refuse to allow this illness to take

> > me down! I know(as well as we all do) what the final result is,

but we

> all need to make the best of each minute we have, Yes? Stay well,

stay

> safe, do something kind for you today!!!! (Buddy)

> >

> >

> >

> > Re: Re: new subscriber - similar

problems

> >

> > Hi ...just want to tell you (not that it matters a lot)

that my

> husband is a model rr. HO scale...keeps him busy!

> > Arthritis took my hobbies....

> > Sher; ipf 3-06; OR.

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

> >

> >

> > __________________________________________________

> >