Hello

[Guest guest]

Hi Jackie,

I have had something since I was 33. First they said RA, then Mixed Connective Tissue disease, then Lupus, then Sjogren's.....I test positive for all. In early '90s I began having various chest wall pain, then coughing and shortness of breath over the next few years. I had been diagnosed with all sorts of things before the docs finally did a biopsy in 1997 and found Pulmonary Fibrosis. They told me 2-4 years. It has been 10 years. I am considered in end stage and am experiencing a greater need for 02, but I still enjoy life.

I live down near Louisville.

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

> > >> > > Hello, I have been a member for awhile now but don't post very> > > often. I have been living with this disease for a year and a half> > > and Lord knows it does not always want to play nice. I was > wondering> > > if anyone has taken cellcept and Imuran together. I had done 10> > > months of cytoxan and developed an allergic reaction, so I am no> > > longer able to take cytoxan. Since I have stoped in July I have > had> > > pnemonia 3 times and I am having decrease in my PFT's and my > last 6> > > min. walk was down with my O2 falling to 85.I started Imuran and> > > have been on steriods for 2 years, I take 60 mg. a day. My > pulmonary> > > doctor has now added cellcept along with all the other drugs. We > are> > > waiting to hear if insurance will pay for me to start Rituxan.> > > Needless to say I am not sure what is worse the disease or all > the> > > meds. I have got to go for another CT because of the mass they > found> > > in my bottom left lung. They found that a few months ago and > wanted> > > to do a open lung bx, but I said no I wanted to repeat the CT in > a> > > month to see if there were any changes. Then we would go from > there> > > and see what needed done. I know thru all of this I have learned > to> > > enjoy life much more. When I thought Lupus was bad little did I > know> > > how good I had it. I now have heart, lungs, and kidneys affected.> > > Thru all of this my faith and family keep me going. Thank you for> > > listening to me. I would love to hear from anyone who has tried> > > these medications. Thank you and god bless! Jackie> > >> >>

[Guest guest]

Hi Joyce,

I am so sorry that you have had all this trouble also. I hope you have a good support at home. I have been on oxygen for over a year know and in the last month they put me on 3 or 4 liters when I am walking. I don't like to be attached to a hose but in the long run it is there to help. Do you see a Pulmonary Dr. In Louisville ? I go to Cincinnati at the University hospital for the pulmonary and oncology, they happen to be husband and wife. Sometimes I am not so sure that is a good thing, but for the most part it works. The Pulmonary doctor works mostly with lung patients that has been caused by connective disease. Sorry I am so windy. Have a wonderful day and God Bless. Jackie

-- Re: Hello

Hi Jackie,

I have had something since I was 33. First they said RA, then Mixed Connective Tissue disease, then Lupus, then Sjogren's.....I test positive for all. In early '90s I began having various chest wall pain, then coughing and shortness of breath over the next few years. I had been diagnosed with all sorts of things before the docs finally did a biopsy in 1997 and found Pulmonary Fibrosis. They told me 2-4 years. It has been 10 years. I am considered in end stage and am experiencing a greater need for 02, but I still enjoy life.

I live down near Louisville.

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

> > >> > > Hello, I have been a member for awhile now but don't post very> > > often . I have been living with this disease for a year and a half> > > and Lord knows it does not always want to play nice. I was > wondering> > > if anyone has taken cellcept and Imuran together. I had done 10> > > months of cytoxan and developed an allergic reaction, so I am no> > > longer able to take cytoxan. Since I have stoped in July I have > had> > > pnemonia 3 times and I am having decrease in my PFT's and my > last 6> > > min. walk was down with my O2 falling to 85.I started Imuran and> > > have been on steriods for 2 years, I take 60 mg. a day. My > pulmonary> > > doctor has now added cellcept along with all the other drugs. We > are> > > waiting to hear if insurance will pay for me to start Rituxan.> > > Needless to say I am not sure what is worse the disease or all > the> > > meds. I have got to go for another CT because of the mass they > found> > > in my bottom left lung. They found that a few months ago and > wanted> > > to do a open lung bx, but I said no I wanted to repeat the CT in > a> > > month to see if there were any changes. Then we would go from > there> > > and see what needed done. I know thru all of this I have learned > to> > > enjoy life much more. When I thought Lupus was bad little did I > know> > > how good I had it. I now have heart, lungs, and kidneys affected.> > > Thru all of this my faith and family keep me going. Thank you for> > > listening to me. I would love to hear from anyone who has tried> > > these medications. Thank you and god bless! Jackie> > >> >>

[Guest guest]

Hi Joyce,

I am so sorry that you have had all this trouble also. I hope you have a good support at home. I have been on oxygen for over a year know and in the last month they put me on 3 or 4 liters when I am walking. I don't like to be attached to a hose but in the long run it is there to help. Do you see a Pulmonary Dr. In Louisville ? I go to Cincinnati at the University hospital for the pulmonary and oncology, they happen to be husband and wife. Sometimes I am not so sure that is a good thing, but for the most part it works. The Pulmonary doctor works mostly with lung patients that has been caused by connective disease. Sorry I am so windy. Have a wonderful day and God Bless. Jackie

-- Re: Hello

Hi Jackie,

I have had something since I was 33. First they said RA, then Mixed Connective Tissue disease, then Lupus, then Sjogren's.....I test positive for all. In early '90s I began having various chest wall pain, then coughing and shortness of breath over the next few years. I had been diagnosed with all sorts of things before the docs finally did a biopsy in 1997 and found Pulmonary Fibrosis. They told me 2-4 years. It has been 10 years. I am considered in end stage and am experiencing a greater need for 02, but I still enjoy life.

I live down near Louisville.

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

> > >> > > Hello, I have been a member for awhile now but don't post very> > > often . I have been living with this disease for a year and a half> > > and Lord knows it does not always want to play nice. I was > wondering> > > if anyone has taken cellcept and Imuran together. I had done 10> > > months of cytoxan and developed an allergic reaction, so I am no> > > longer able to take cytoxan. Since I have stoped in July I have > had> > > pnemonia 3 times and I am having decrease in my PFT's and my > last 6> > > min. walk was down with my O2 falling to 85.I started Imuran and> > > have been on steriods for 2 years, I take 60 mg. a day. My > pulmonary> > > doctor has now added cellcept along with all the other drugs. We > are> > > waiting to hear if insurance will pay for me to start Rituxan.> > > Needless to say I am not sure what is worse the disease or all > the> > > meds. I have got to go for another CT because of the mass they > found> > > in my bottom left lung. They found that a few months ago and > wanted> > > to do a open lung bx, but I said no I wanted to repeat the CT in > a> > > month to see if there were any changes. Then we would go from > there> > > and see what needed done. I know thru all of this I have learned > to> > > enjoy life much more. When I thought Lupus was bad little did I > know> > > how good I had it. I now have heart, lungs, and kidneys affected.> > > Thru all of this my faith and family keep me going. Thank you for> > > listening to me. I would love to hear from anyone who has tried> > > these medications. Thank you and god bless! Jackie> > >> >>

[Guest guest]

I am a new member of this group and am not familiar with the

abbreviations everyone is using... specifically the phrase you used

was end stage IPF... how do you know? I was diagnosed with

polymyositis/vasculitus in 2005 - rapid onset - paralyzed to my neck

before they figured out what it was.. Prednisone gave me back the

ability to walk that time. Had been shipped to the Twin Cities in MN

for treatment, when returned to Fargo, ND ended up in hospital again

this time with pulmonary emboli (about 7 clots - right lung)

Last year I broke both my feet due to osteoporis brought on by large

amounts of prednisone (I was also taking immuran and methatrexate).

This April I had cleaners in to tear out my basement carpet - sump

pump had failed in the rain, and after they were done blowing stuff

around wiTh big dryers I ended up in the hospital. (Happened Friday

Night and on a vent by Monday night). Got off the vent and went

home; then ended back in the hospital on a ventilator again for about

3-4 weeks, came off doing ok, kidneys failed -- back on ventilator

until end of June. Just got out of the hospital August 17 after

relearning how to walk and move. Lost all movement except right arm

from inactivity.

The second time I was on a vent they did a lung biopsy in my ICU room

as I was to ill to transport to the OR. They diagnosed the lung

issue as Pulmonary Fibrosis. I now use oxegen 24 x 7 , when I

exercise I have to exercise on 10-15 L of oxegen. When resting or

not standing I can go with 2.5 or a little more.

What test results (I've probably done them all) can give me a clue if

I have only a little time left or more than that? I go to Mayo again

next week to see pulmonary docs. Have one here, but like Mayo too...

Already have a rheumatoligist at Mayo.

Any information you folks could provide me would be helpful.. I'm

not trying to be morbid, but I'd like to have a better idea of when...

Thanks,

Kristal

> > > >

> > > > Hello, I have been a member for awhile now but don't post very

> > > > often. I have been living with this disease for a year and a

half

> > > > and Lord knows it does not always want to play nice. I was

> > wondering

> > > > if anyone has taken cellcept and Imuran together. I had done

10

> > > > months of cytoxan and developed an allergic reaction, so I am

no

> > > > longer able to take cytoxan. Since I have stoped in July I

have

> > had

> > > > pnemonia 3 times and I am having decrease in my PFT's and my

> > last 6

> > > > min. walk was down with my O2 falling to 85.I started Imuran

and

> > > > have been on steriods for 2 years, I take 60 mg. a day. My

> > pulmonary

> > > > doctor has now added cellcept along with all the other drugs.

We

> > are

> > > > waiting to hear if insurance will pay for me to start Rituxan.

> > > > Needless to say I am not sure what is worse the disease or all

> > the

> > > > meds. I have got to go for another CT because of the mass they

> > found

> > > > in my bottom left lung. They found that a few months ago and

> > wanted

> > > > to do a open lung bx, but I said no I wanted to repeat the CT

in

> > a

> > > > month to see if there were any changes. Then we would go from

> > there

> > > > and see what needed done. I know thru all of this I have

learned

> > to

> > > > enjoy life much more. When I thought Lupus was bad little did

I

> > know

> > > > how good I had it. I now have heart, lungs, and kidneys

affected.

> > > > Thru all of this my faith and family keep me going. Thank you

for

> > > > listening to me. I would love to hear from anyone who has

tried

> > > > these medications. Thank you and god bless! Jackie

> > > >

> > >

> >

>

[Guest guest]

I am a new member of this group and am not familiar with the

abbreviations everyone is using... specifically the phrase you used

was end stage IPF... how do you know? I was diagnosed with

polymyositis/vasculitus in 2005 - rapid onset - paralyzed to my neck

before they figured out what it was.. Prednisone gave me back the

ability to walk that time. Had been shipped to the Twin Cities in MN

for treatment, when returned to Fargo, ND ended up in hospital again

this time with pulmonary emboli (about 7 clots - right lung)

Last year I broke both my feet due to osteoporis brought on by large

amounts of prednisone (I was also taking immuran and methatrexate).

This April I had cleaners in to tear out my basement carpet - sump

pump had failed in the rain, and after they were done blowing stuff

around wiTh big dryers I ended up in the hospital. (Happened Friday

Night and on a vent by Monday night). Got off the vent and went

home; then ended back in the hospital on a ventilator again for about

3-4 weeks, came off doing ok, kidneys failed -- back on ventilator

until end of June. Just got out of the hospital August 17 after

relearning how to walk and move. Lost all movement except right arm

from inactivity.

The second time I was on a vent they did a lung biopsy in my ICU room

as I was to ill to transport to the OR. They diagnosed the lung

issue as Pulmonary Fibrosis. I now use oxegen 24 x 7 , when I

exercise I have to exercise on 10-15 L of oxegen. When resting or

not standing I can go with 2.5 or a little more.

What test results (I've probably done them all) can give me a clue if

I have only a little time left or more than that? I go to Mayo again

next week to see pulmonary docs. Have one here, but like Mayo too...

Already have a rheumatoligist at Mayo.

Any information you folks could provide me would be helpful.. I'm

not trying to be morbid, but I'd like to have a better idea of when...

Thanks,

Kristal

> > > >

> > > > Hello, I have been a member for awhile now but don't post very

> > > > often. I have been living with this disease for a year and a

half

> > > > and Lord knows it does not always want to play nice. I was

> > wondering

> > > > if anyone has taken cellcept and Imuran together. I had done

10

> > > > months of cytoxan and developed an allergic reaction, so I am

no

> > > > longer able to take cytoxan. Since I have stoped in July I

have

> > had

> > > > pnemonia 3 times and I am having decrease in my PFT's and my

> > last 6

> > > > min. walk was down with my O2 falling to 85.I started Imuran

and

> > > > have been on steriods for 2 years, I take 60 mg. a day. My

> > pulmonary

> > > > doctor has now added cellcept along with all the other drugs.

We

> > are

> > > > waiting to hear if insurance will pay for me to start Rituxan.

> > > > Needless to say I am not sure what is worse the disease or all

> > the

> > > > meds. I have got to go for another CT because of the mass they

> > found

> > > > in my bottom left lung. They found that a few months ago and

> > wanted

> > > > to do a open lung bx, but I said no I wanted to repeat the CT

in

> > a

> > > > month to see if there were any changes. Then we would go from

> > there

> > > > and see what needed done. I know thru all of this I have

learned

> > to

> > > > enjoy life much more. When I thought Lupus was bad little did

I

> > know

> > > > how good I had it. I now have heart, lungs, and kidneys

affected.

> > > > Thru all of this my faith and family keep me going. Thank you

for

> > > > listening to me. I would love to hear from anyone who has

tried

> > > > these medications. Thank you and god bless! Jackie

> > > >

> > >

> >

>

[Guest guest]

I am a new member of this group and am not familiar with the

abbreviations everyone is using... specifically the phrase you used

was end stage IPF... how do you know? I was diagnosed with

polymyositis/vasculitus in 2005 - rapid onset - paralyzed to my neck

before they figured out what it was.. Prednisone gave me back the

ability to walk that time. Had been shipped to the Twin Cities in MN

for treatment, when returned to Fargo, ND ended up in hospital again

this time with pulmonary emboli (about 7 clots - right lung)

Last year I broke both my feet due to osteoporis brought on by large

amounts of prednisone (I was also taking immuran and methatrexate).

This April I had cleaners in to tear out my basement carpet - sump

pump had failed in the rain, and after they were done blowing stuff

around wiTh big dryers I ended up in the hospital. (Happened Friday

Night and on a vent by Monday night). Got off the vent and went

home; then ended back in the hospital on a ventilator again for about

3-4 weeks, came off doing ok, kidneys failed -- back on ventilator

until end of June. Just got out of the hospital August 17 after

relearning how to walk and move. Lost all movement except right arm

from inactivity.

The second time I was on a vent they did a lung biopsy in my ICU room

as I was to ill to transport to the OR. They diagnosed the lung

issue as Pulmonary Fibrosis. I now use oxegen 24 x 7 , when I

exercise I have to exercise on 10-15 L of oxegen. When resting or

not standing I can go with 2.5 or a little more.

What test results (I've probably done them all) can give me a clue if

I have only a little time left or more than that? I go to Mayo again

next week to see pulmonary docs. Have one here, but like Mayo too...

Already have a rheumatoligist at Mayo.

Any information you folks could provide me would be helpful.. I'm

not trying to be morbid, but I'd like to have a better idea of when...

Thanks,

Kristal

> > > >

> > > > Hello, I have been a member for awhile now but don't post very

> > > > often. I have been living with this disease for a year and a

half

> > > > and Lord knows it does not always want to play nice. I was

> > wondering

> > > > if anyone has taken cellcept and Imuran together. I had done

10

> > > > months of cytoxan and developed an allergic reaction, so I am

no

> > > > longer able to take cytoxan. Since I have stoped in July I

have

> > had

> > > > pnemonia 3 times and I am having decrease in my PFT's and my

> > last 6

> > > > min. walk was down with my O2 falling to 85.I started Imuran

and

> > > > have been on steriods for 2 years, I take 60 mg. a day. My

> > pulmonary

> > > > doctor has now added cellcept along with all the other drugs.

We

> > are

> > > > waiting to hear if insurance will pay for me to start Rituxan.

> > > > Needless to say I am not sure what is worse the disease or all

> > the

> > > > meds. I have got to go for another CT because of the mass they

> > found

> > > > in my bottom left lung. They found that a few months ago and

> > wanted

> > > > to do a open lung bx, but I said no I wanted to repeat the CT

in

> > a

> > > > month to see if there were any changes. Then we would go from

> > there

> > > > and see what needed done. I know thru all of this I have

learned

> > to

> > > > enjoy life much more. When I thought Lupus was bad little did

I

> > know

> > > > how good I had it. I now have heart, lungs, and kidneys

affected.

> > > > Thru all of this my faith and family keep me going. Thank you

for

> > > > listening to me. I would love to hear from anyone who has

tried

> > > > these medications. Thank you and god bless! Jackie

> > > >

> > >

> >

>

[Guest guest]

Kristal,

It is certainly o.k. to speak of dying here. This is a place to get real, to be able to let it out and know for certain that your thoughts are understood. We get it! We all question "when?" It is not for us to know. God is in control and in his time we will all, even those who are not sick now, will face death.

I am 10 years from biopsy when I was told 2-4. Like you I had other health issues and this was the frosting on the cake....not!

We have another member who has Polymyositis. His name is . Perhaps he will respond to your post. If not watch for his posts. He also has other health issues.

I used the term end stage because my doctors use that term. About 15 months ago after an HRCT they said that it showed extensive honeycombing. But even end stage can stabalize. I stayed the same for a year, then the last few months have had a downward slide. I went from 4-5L 02 to 7-8L in 4 months. That has been the course of this disease for me. Stable then downward slide. So, I may remain stable at the point. Who knows? This disease is so unpredictable.

It sounds like you have excellent care.

I'm glad you came to our group. We learn so much from each other. We hold each other up when times are bad and rejoice together when the good times come.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > > > >> > > > > Hello, I have been a member for awhile now but don't post very> > > > > often. I have been living with this disease for a year and a > half> > > > > and Lord knows it does not always want to play nice. I was> > > wondering> > > > > if anyone has taken cellcept and Imuran together. I had done > 10> > > > > months of cytoxan and developed an allergic reaction, so I am > no> > > > > longer able to take cytoxan. Since I have stoped in July I > have> > > had> > > > > pnemonia 3 times and I am having decrease in my PFT's and my> > > last 6> > > > > min. walk was down with my O2 falling to 85.I started Imuran > and> > > > > have been on steriods for 2 years, I take 60 mg. a day. My> > > pulmonary> > > > > doctor has now added cellcept along with all the other drugs. > We> > > are> > > > > waiting to hear if insurance will pay for me to start Rituxan.> > > > > Needless to say I am not sure what is worse the disease or all> > > the> > > > > meds. I have got to go for another CT because of the mass they> > > found> > > > > in my bottom left lung. They found that a few months ago and> > > wanted> > > > > to do a open lung bx, but I said no I wanted to repeat the CT > in> > > a> > > > > month to see if there were any changes. Then we would go from> > > there> > > > > and see what needed done. I know thru all of this I have > learned> > > to> > > > > enjoy life much more. When I thought Lupus was bad little did > I> > > know> > > > > how good I had it. I now have heart, lungs, and kidneys > affected.> > > > > Thru all of this my faith and family keep me going. Thank you > for> > > > > listening to me. I would love to hear from anyone who has > tried> > > > > these medications. Thank you and god bless! Jackie> > > > >> > > >> > >> >>

[Guest guest]

Kristal,

It is certainly o.k. to speak of dying here. This is a place to get real, to be able to let it out and know for certain that your thoughts are understood. We get it! We all question "when?" It is not for us to know. God is in control and in his time we will all, even those who are not sick now, will face death.

I am 10 years from biopsy when I was told 2-4. Like you I had other health issues and this was the frosting on the cake....not!

We have another member who has Polymyositis. His name is . Perhaps he will respond to your post. If not watch for his posts. He also has other health issues.

I used the term end stage because my doctors use that term. About 15 months ago after an HRCT they said that it showed extensive honeycombing. But even end stage can stabalize. I stayed the same for a year, then the last few months have had a downward slide. I went from 4-5L 02 to 7-8L in 4 months. That has been the course of this disease for me. Stable then downward slide. So, I may remain stable at the point. Who knows? This disease is so unpredictable.

It sounds like you have excellent care.

I'm glad you came to our group. We learn so much from each other. We hold each other up when times are bad and rejoice together when the good times come.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > > > >> > > > > Hello, I have been a member for awhile now but don't post very> > > > > often. I have been living with this disease for a year and a > half> > > > > and Lord knows it does not always want to play nice. I was> > > wondering> > > > > if anyone has taken cellcept and Imuran together. I had done > 10> > > > > months of cytoxan and developed an allergic reaction, so I am > no> > > > > longer able to take cytoxan. Since I have stoped in July I > have> > > had> > > > > pnemonia 3 times and I am having decrease in my PFT's and my> > > last 6> > > > > min. walk was down with my O2 falling to 85.I started Imuran > and> > > > > have been on steriods for 2 years, I take 60 mg. a day. My> > > pulmonary> > > > > doctor has now added cellcept along with all the other drugs. > We> > > are> > > > > waiting to hear if insurance will pay for me to start Rituxan.> > > > > Needless to say I am not sure what is worse the disease or all> > > the> > > > > meds. I have got to go for another CT because of the mass they> > > found> > > > > in my bottom left lung. They found that a few months ago and> > > wanted> > > > > to do a open lung bx, but I said no I wanted to repeat the CT > in> > > a> > > > > month to see if there were any changes. Then we would go from> > > there> > > > > and see what needed done. I know thru all of this I have > learned> > > to> > > > > enjoy life much more. When I thought Lupus was bad little did > I> > > know> > > > > how good I had it. I now have heart, lungs, and kidneys > affected.> > > > > Thru all of this my faith and family keep me going. Thank you > for> > > > > listening to me. I would love to hear from anyone who has > tried> > > > > these medications. Thank you and god bless! Jackie> > > > >> > > >> > >> >>

[Guest guest]

Kristal,

It is certainly o.k. to speak of dying here. This is a place to get real, to be able to let it out and know for certain that your thoughts are understood. We get it! We all question "when?" It is not for us to know. God is in control and in his time we will all, even those who are not sick now, will face death.

I am 10 years from biopsy when I was told 2-4. Like you I had other health issues and this was the frosting on the cake....not!

We have another member who has Polymyositis. His name is . Perhaps he will respond to your post. If not watch for his posts. He also has other health issues.

I used the term end stage because my doctors use that term. About 15 months ago after an HRCT they said that it showed extensive honeycombing. But even end stage can stabalize. I stayed the same for a year, then the last few months have had a downward slide. I went from 4-5L 02 to 7-8L in 4 months. That has been the course of this disease for me. Stable then downward slide. So, I may remain stable at the point. Who knows? This disease is so unpredictable.

It sounds like you have excellent care.

I'm glad you came to our group. We learn so much from each other. We hold each other up when times are bad and rejoice together when the good times come.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > > > >> > > > > Hello, I have been a member for awhile now but don't post very> > > > > often. I have been living with this disease for a year and a > half> > > > > and Lord knows it does not always want to play nice. I was> > > wondering> > > > > if anyone has taken cellcept and Imuran together. I had done > 10> > > > > months of cytoxan and developed an allergic reaction, so I am > no> > > > > longer able to take cytoxan. Since I have stoped in July I > have> > > had> > > > > pnemonia 3 times and I am having decrease in my PFT's and my> > > last 6> > > > > min. walk was down with my O2 falling to 85.I started Imuran > and> > > > > have been on steriods for 2 years, I take 60 mg. a day. My> > > pulmonary> > > > > doctor has now added cellcept along with all the other drugs. > We> > > are> > > > > waiting to hear if insurance will pay for me to start Rituxan.> > > > > Needless to say I am not sure what is worse the disease or all> > > the> > > > > meds. I have got to go for another CT because of the mass they> > > found> > > > > in my bottom left lung. They found that a few months ago and> > > wanted> > > > > to do a open lung bx, but I said no I wanted to repeat the CT > in> > > a> > > > > month to see if there were any changes. Then we would go from> > > there> > > > > and see what needed done. I know thru all of this I have > learned> > > to> > > > > enjoy life much more. When I thought Lupus was bad little did > I> > > know> > > > > how good I had it. I now have heart, lungs, and kidneys > affected.> > > > > Thru all of this my faith and family keep me going. Thank you > for> > > > > listening to me. I would love to hear from anyone who has > tried> > > > > these medications. Thank you and god bless! Jackie> > > > >> > > >> > >> >>

[Guest guest]

Dear Kristal,

Sorry to hear that you have gone through so much . Having a illness is never what anyone every wants. The one thing that I have realized that any disease try's so hard to take control and leave us stranded in the wind. But I do try to fight all the way, and yes some days I am so tried of fighting all of it, but I refuse to let my spirt get broke. I have had lupus for 17 years and had done pretty good with most of it. Little did I know both of my kids would develop Arthritis, our son has systemic JRA and our daughter developed pauci JRA and has tested positive for Lupus. After years of watching our son go through so much and he went into remission I become very ill. I have pulmonary fibrosis and pulmonary hypertension along with Lupus and diabetes and HP. The doctors said I have only 2 to 10 years left of my life and all it would take would be just getting a cold. The funny part of all of this is they are not God only he knows when my earthly time is over. If these illness's have taught me anything it is what does not break you will make you a stronger person. I don't look for the end only the beauty of each day. And am truly thankful for each day I wake up and am still able to spend time with my family and friends. My heart breaks because I am unable to do the things I used to but just maybe my life is meant to find other meanings. Have a wonderful day and God Bless. Jackie

-- Re: Hello

I am a new member of this group and am not familiar with the

abbreviations everyone is using... specifically the phrase you used

was end stage IPF... how do you know? I was diagnosed with

polymyositis/vasculitus in 2005 - rapid onset - paralyzed to my neck

before they figured out what it was.. Prednisone gave me back the

ability to walk that time. Had been shipped to the Twin Cities in MN

For treatment, when returned to Fargo, ND ended up in hospital again

this time with pulmonary emboli (about 7 clots - right lung)

Last year I broke both my feet due to osteoporis brought on by large

amounts of prednisone (I was also taking immuran and methatrexate).

This April I had cleaners in to tear out my basement carpet - sump

pump had failed in the rain, and after they were done blowing stuff

around wiTh big dryers I ended up in the hospital. (Happened Friday

Night and on a vent by Monday night). Got off the vent and went

home; then ended back in the hospital on a ventilator again for about

3-4 weeks, came off doing ok, kidneys failed -- back on ventilator

until end of June. Just got out of the hospital August 17 after

relearning how to walk and move. Lost all movement except right arm

from inactivity.

The second time I was on a vent they did a lung biopsy in my ICU room

as I was to ill to transport to the OR. They diagnosed the lung

issue as Pulmonary Fibrosis. I now use oxegen 24 x 7 , when I

exercise I have to exercise on 10-15 L of oxegen. When resting or

not standing I can go with 2.5 or a little more.

What test results (I've probably done them all) can give me a clue if

I have only a little time left or more than that? I go to Mayo again

next week to see pulmonary docs. Have one here, but like Mayo too...

Already have a rheumatoligist at Mayo.

Any information you folks could provide me would be helpful.. I'm

not trying to be morbid, but I'd like to have a better idea of when...

Thanks,

Kristal

---

[Guest guest]

Dear Kristal,

Sorry to hear that you have gone through so much . Having a illness is never what anyone every wants. The one thing that I have realized that any disease try's so hard to take control and leave us stranded in the wind. But I do try to fight all the way, and yes some days I am so tried of fighting all of it, but I refuse to let my spirt get broke. I have had lupus for 17 years and had done pretty good with most of it. Little did I know both of my kids would develop Arthritis, our son has systemic JRA and our daughter developed pauci JRA and has tested positive for Lupus. After years of watching our son go through so much and he went into remission I become very ill. I have pulmonary fibrosis and pulmonary hypertension along with Lupus and diabetes and HP. The doctors said I have only 2 to 10 years left of my life and all it would take would be just getting a cold. The funny part of all of this is they are not God only he knows when my earthly time is over. If these illness's have taught me anything it is what does not break you will make you a stronger person. I don't look for the end only the beauty of each day. And am truly thankful for each day I wake up and am still able to spend time with my family and friends. My heart breaks because I am unable to do the things I used to but just maybe my life is meant to find other meanings. Have a wonderful day and God Bless. Jackie

-- Re: Hello

I am a new member of this group and am not familiar with the

abbreviations everyone is using... specifically the phrase you used

was end stage IPF... how do you know? I was diagnosed with

polymyositis/vasculitus in 2005 - rapid onset - paralyzed to my neck

before they figured out what it was.. Prednisone gave me back the

ability to walk that time. Had been shipped to the Twin Cities in MN

For treatment, when returned to Fargo, ND ended up in hospital again

this time with pulmonary emboli (about 7 clots - right lung)

Last year I broke both my feet due to osteoporis brought on by large

amounts of prednisone (I was also taking immuran and methatrexate).

This April I had cleaners in to tear out my basement carpet - sump

pump had failed in the rain, and after they were done blowing stuff

around wiTh big dryers I ended up in the hospital. (Happened Friday

Night and on a vent by Monday night). Got off the vent and went

home; then ended back in the hospital on a ventilator again for about

3-4 weeks, came off doing ok, kidneys failed -- back on ventilator

until end of June. Just got out of the hospital August 17 after

relearning how to walk and move. Lost all movement except right arm

from inactivity.

The second time I was on a vent they did a lung biopsy in my ICU room

as I was to ill to transport to the OR. They diagnosed the lung

issue as Pulmonary Fibrosis. I now use oxegen 24 x 7 , when I

exercise I have to exercise on 10-15 L of oxegen. When resting or

not standing I can go with 2.5 or a little more.

What test results (I've probably done them all) can give me a clue if

I have only a little time left or more than that? I go to Mayo again

next week to see pulmonary docs. Have one here, but like Mayo too...

Already have a rheumatoligist at Mayo.

Any information you folks could provide me would be helpful.. I'm

not trying to be morbid, but I'd like to have a better idea of when...

Thanks,

Kristal

---

[Guest guest]

Dear Kristal,

Sorry to hear that you have gone through so much . Having a illness is never what anyone every wants. The one thing that I have realized that any disease try's so hard to take control and leave us stranded in the wind. But I do try to fight all the way, and yes some days I am so tried of fighting all of it, but I refuse to let my spirt get broke. I have had lupus for 17 years and had done pretty good with most of it. Little did I know both of my kids would develop Arthritis, our son has systemic JRA and our daughter developed pauci JRA and has tested positive for Lupus. After years of watching our son go through so much and he went into remission I become very ill. I have pulmonary fibrosis and pulmonary hypertension along with Lupus and diabetes and HP. The doctors said I have only 2 to 10 years left of my life and all it would take would be just getting a cold. The funny part of all of this is they are not God only he knows when my earthly time is over. If these illness's have taught me anything it is what does not break you will make you a stronger person. I don't look for the end only the beauty of each day. And am truly thankful for each day I wake up and am still able to spend time with my family and friends. My heart breaks because I am unable to do the things I used to but just maybe my life is meant to find other meanings. Have a wonderful day and God Bless. Jackie

-- Re: Hello

I am a new member of this group and am not familiar with the

abbreviations everyone is using... specifically the phrase you used

was end stage IPF... how do you know? I was diagnosed with

polymyositis/vasculitus in 2005 - rapid onset - paralyzed to my neck

before they figured out what it was.. Prednisone gave me back the

ability to walk that time. Had been shipped to the Twin Cities in MN

For treatment, when returned to Fargo, ND ended up in hospital again

this time with pulmonary emboli (about 7 clots - right lung)

Last year I broke both my feet due to osteoporis brought on by large

amounts of prednisone (I was also taking immuran and methatrexate).

This April I had cleaners in to tear out my basement carpet - sump

pump had failed in the rain, and after they were done blowing stuff

around wiTh big dryers I ended up in the hospital. (Happened Friday

Night and on a vent by Monday night). Got off the vent and went

home; then ended back in the hospital on a ventilator again for about

3-4 weeks, came off doing ok, kidneys failed -- back on ventilator

until end of June. Just got out of the hospital August 17 after

relearning how to walk and move. Lost all movement except right arm

from inactivity.

The second time I was on a vent they did a lung biopsy in my ICU room

as I was to ill to transport to the OR. They diagnosed the lung

issue as Pulmonary Fibrosis. I now use oxegen 24 x 7 , when I

exercise I have to exercise on 10-15 L of oxegen. When resting or

not standing I can go with 2.5 or a little more.

What test results (I've probably done them all) can give me a clue if

I have only a little time left or more than that? I go to Mayo again

next week to see pulmonary docs. Have one here, but like Mayo too...

Already have a rheumatoligist at Mayo.

Any information you folks could provide me would be helpful.. I'm

not trying to be morbid, but I'd like to have a better idea of when...

Thanks,

Kristal

---

[Guest guest]

Hello Kristal,

There is not way to know " when " . My heart goes out to you but you

sound as if you are a very, very strong person. You have to live each

day to it's fullest and let the " when " take care of itself. You do

what you need to do to be content and at peace. Don't lay down for

the " when " . Live in the here and now. Each day is a blessing. Keep

being strong and reaching out. You are in my prayers.

ette

Hi jacevans " ,

I read your response to Kristal and thought my God, someone else is

carrying a lot of chronic illnesses and conditions. When I go for a

test or procedure, I sometimes forget what is going on. I was first

diagnosed with lupus in '99, had a heart attack in '01, then

diagnosed with MS and automimmune hepatitis/overlap PBC. My breathing

got almost impossible in December '05. That Fall was the pits. I

thought I was having an anxiety attack when I tried to snorkel - not

anxiety - could not breath! I was diagnosed with bronchitis - okay.

However, in February '06, I was rushed to the hospital - pulmonary

hypertension with prognosis of 2 - 5 years. I was not made aware of

the pulmonary fibrosis from the mouth of a clinician until September

('07)! The PF was first. I know so because of xray reports I have and

have been reviewing.

It's a mess, just a mess. But God! I have started a PH support group

in my area and try to be as active as possible with CPF. There isn't

much being said over the airways and in magazines but thousands

suffer in the US alone with these problems.

My mission is awareness and earlier detection. I've rambled enough.

It's nice to meet all of you here!

ette

>

>

> Dear Kristal,

> Sorry to hear that you have gone through so much . Having a illness

is never

> what anyone every wants. The one thing that I have realized that

any disease

> try's so hard to take control and leave us stranded in the wind.

But I do

> try to fight all the way, and yes some days I am so tried of

fighting all of

> it, but I refuse to let my spirt get broke. I have had lupus for 17

years

> and had done pretty good with most of it. Little did I know both of

my kids

> would develop Arthritis, our son has systemic JRA and our daughter

developed

> pauci JRA and has tested positive for Lupus. After years of

watching our son

> go through so much and he went into remission I become very ill. I

have

> pulmonary fibrosis and pulmonary hypertension along with Lupus and

diabetes

> and HP. The doctors said I have only 2 to 10 years left of my life

and all

> it would take would be just getting a cold. The funny part of all

of this is

> they are not God only he knows when my earthly time is over. If

these

> illness's have taught me anything it is what does not break you

will make

> you a stronger person. I don't look for the end only the beauty of

each day.

> And am truly thankful for each day I wake up and am still able to

spend time

> with my family and friends. My heart breaks because I am unable to

do the

> things I used to but just maybe my life is meant to find other

meanings.

> Have a wonderful day and God Bless. Jackie

> -- Re: Hello

>

> I am a new member of this group and am not familiar with the

> abbreviations everyone is using... specifically the phrase you used

> was end stage IPF... how do you know? I was diagnosed with

> polymyositis/vasculitus in 2005 - rapid onset - paralyzed to my neck

> before they figured out what it was.. Prednisone gave me back the

> ability to walk that time. Had been shipped to the Twin Cities in

MN

> For treatment, when returned to Fargo, ND ended up in hospital again

> this time with pulmonary emboli (about 7 clots - right lung)

>

> Last year I broke both my feet due to osteoporis brought on by large

> amounts of prednisone (I was also taking immuran and methatrexate).

> This April I had cleaners in to tear out my basement carpet - sump

> pump had failed in the rain, and after they were done blowing stuff

> around wiTh big dryers I ended up in the hospital. (Happened Friday

> Night and on a vent by Monday night). Got off the vent and went

> home; then ended back in the hospital on a ventilator again for

about

> 3-4 weeks, came off doing ok, kidneys failed -- back on ventilator

> until end of June. Just got out of the hospital August 17 after

> relearning how to walk and move. Lost all movement except right arm

> from inactivity.

>

> The second time I was on a vent they did a lung biopsy in my ICU

room

> as I was to ill to transport to the OR. They diagnosed the lung

> issue as Pulmonary Fibrosis. I now use oxegen 24 x 7 , when I

> exercise I have to exercise on 10-15 L of oxegen. When resting or

> not standing I can go with 2.5 or a little more.

>

> What test results (I've probably done them all) can give me a clue

if

> I have only a little time left or more than that? I go to Mayo

again

> next week to see pulmonary docs. Have one here, but like Mayo

too...

> Already have a rheumatoligist at Mayo.

>

> Any information you folks could provide me would be helpful.. I'm

> not trying to be morbid, but I'd like to have a better idea of

when...

>

> Thanks,

> Kristal

>

>

>

>

>

>

>

>

>

>

> ---

>

[Guest guest]

Hello Kristal,

There is not way to know " when " . My heart goes out to you but you

sound as if you are a very, very strong person. You have to live each

day to it's fullest and let the " when " take care of itself. You do

what you need to do to be content and at peace. Don't lay down for

the " when " . Live in the here and now. Each day is a blessing. Keep

being strong and reaching out. You are in my prayers.

ette

Hi jacevans " ,

I read your response to Kristal and thought my God, someone else is

carrying a lot of chronic illnesses and conditions. When I go for a

test or procedure, I sometimes forget what is going on. I was first

diagnosed with lupus in '99, had a heart attack in '01, then

diagnosed with MS and automimmune hepatitis/overlap PBC. My breathing

got almost impossible in December '05. That Fall was the pits. I

thought I was having an anxiety attack when I tried to snorkel - not

anxiety - could not breath! I was diagnosed with bronchitis - okay.

However, in February '06, I was rushed to the hospital - pulmonary

hypertension with prognosis of 2 - 5 years. I was not made aware of

the pulmonary fibrosis from the mouth of a clinician until September

('07)! The PF was first. I know so because of xray reports I have and

have been reviewing.

It's a mess, just a mess. But God! I have started a PH support group

in my area and try to be as active as possible with CPF. There isn't

much being said over the airways and in magazines but thousands

suffer in the US alone with these problems.

My mission is awareness and earlier detection. I've rambled enough.

It's nice to meet all of you here!

ette

>

>

> Dear Kristal,

> Sorry to hear that you have gone through so much . Having a illness

is never

> what anyone every wants. The one thing that I have realized that

any disease

> try's so hard to take control and leave us stranded in the wind.

But I do

> try to fight all the way, and yes some days I am so tried of

fighting all of

> it, but I refuse to let my spirt get broke. I have had lupus for 17

years

> and had done pretty good with most of it. Little did I know both of

my kids

> would develop Arthritis, our son has systemic JRA and our daughter

developed

> pauci JRA and has tested positive for Lupus. After years of

watching our son

> go through so much and he went into remission I become very ill. I

have

> pulmonary fibrosis and pulmonary hypertension along with Lupus and

diabetes

> and HP. The doctors said I have only 2 to 10 years left of my life

and all

> it would take would be just getting a cold. The funny part of all

of this is

> they are not God only he knows when my earthly time is over. If

these

> illness's have taught me anything it is what does not break you

will make

> you a stronger person. I don't look for the end only the beauty of

each day.

> And am truly thankful for each day I wake up and am still able to

spend time

> with my family and friends. My heart breaks because I am unable to

do the

> things I used to but just maybe my life is meant to find other

meanings.

> Have a wonderful day and God Bless. Jackie

> -- Re: Hello

>

> I am a new member of this group and am not familiar with the

> abbreviations everyone is using... specifically the phrase you used

> was end stage IPF... how do you know? I was diagnosed with

> polymyositis/vasculitus in 2005 - rapid onset - paralyzed to my neck

> before they figured out what it was.. Prednisone gave me back the

> ability to walk that time. Had been shipped to the Twin Cities in

MN

> For treatment, when returned to Fargo, ND ended up in hospital again

> this time with pulmonary emboli (about 7 clots - right lung)

>

> Last year I broke both my feet due to osteoporis brought on by large

> amounts of prednisone (I was also taking immuran and methatrexate).

> This April I had cleaners in to tear out my basement carpet - sump

> pump had failed in the rain, and after they were done blowing stuff

> around wiTh big dryers I ended up in the hospital. (Happened Friday

> Night and on a vent by Monday night). Got off the vent and went

> home; then ended back in the hospital on a ventilator again for

about

> 3-4 weeks, came off doing ok, kidneys failed -- back on ventilator

> until end of June. Just got out of the hospital August 17 after

> relearning how to walk and move. Lost all movement except right arm

> from inactivity.

>

> The second time I was on a vent they did a lung biopsy in my ICU

room

> as I was to ill to transport to the OR. They diagnosed the lung

> issue as Pulmonary Fibrosis. I now use oxegen 24 x 7 , when I

> exercise I have to exercise on 10-15 L of oxegen. When resting or

> not standing I can go with 2.5 or a little more.

>

> What test results (I've probably done them all) can give me a clue

if

> I have only a little time left or more than that? I go to Mayo

again

> next week to see pulmonary docs. Have one here, but like Mayo

too...

> Already have a rheumatoligist at Mayo.

>

> Any information you folks could provide me would be helpful.. I'm

> not trying to be morbid, but I'd like to have a better idea of

when...

>

> Thanks,

> Kristal

>

>

>

>

>

>

>

>

>

>

> ---

>

[Guest guest]

Hello Kristal,

There is not way to know " when " . My heart goes out to you but you

sound as if you are a very, very strong person. You have to live each

day to it's fullest and let the " when " take care of itself. You do

what you need to do to be content and at peace. Don't lay down for

the " when " . Live in the here and now. Each day is a blessing. Keep

being strong and reaching out. You are in my prayers.

ette

Hi jacevans " ,

I read your response to Kristal and thought my God, someone else is

carrying a lot of chronic illnesses and conditions. When I go for a

test or procedure, I sometimes forget what is going on. I was first

diagnosed with lupus in '99, had a heart attack in '01, then

diagnosed with MS and automimmune hepatitis/overlap PBC. My breathing

got almost impossible in December '05. That Fall was the pits. I

thought I was having an anxiety attack when I tried to snorkel - not

anxiety - could not breath! I was diagnosed with bronchitis - okay.

However, in February '06, I was rushed to the hospital - pulmonary

hypertension with prognosis of 2 - 5 years. I was not made aware of

the pulmonary fibrosis from the mouth of a clinician until September

('07)! The PF was first. I know so because of xray reports I have and

have been reviewing.

It's a mess, just a mess. But God! I have started a PH support group

in my area and try to be as active as possible with CPF. There isn't

much being said over the airways and in magazines but thousands

suffer in the US alone with these problems.

My mission is awareness and earlier detection. I've rambled enough.

It's nice to meet all of you here!

ette

>

>

> Dear Kristal,

> Sorry to hear that you have gone through so much . Having a illness

is never

> what anyone every wants. The one thing that I have realized that

any disease

> try's so hard to take control and leave us stranded in the wind.

But I do

> try to fight all the way, and yes some days I am so tried of

fighting all of

> it, but I refuse to let my spirt get broke. I have had lupus for 17

years

> and had done pretty good with most of it. Little did I know both of

my kids

> would develop Arthritis, our son has systemic JRA and our daughter

developed

> pauci JRA and has tested positive for Lupus. After years of

watching our son

> go through so much and he went into remission I become very ill. I

have

> pulmonary fibrosis and pulmonary hypertension along with Lupus and

diabetes

> and HP. The doctors said I have only 2 to 10 years left of my life

and all

> it would take would be just getting a cold. The funny part of all

of this is

> they are not God only he knows when my earthly time is over. If

these

> illness's have taught me anything it is what does not break you

will make

> you a stronger person. I don't look for the end only the beauty of

each day.

> And am truly thankful for each day I wake up and am still able to

spend time

> with my family and friends. My heart breaks because I am unable to

do the

> things I used to but just maybe my life is meant to find other

meanings.

> Have a wonderful day and God Bless. Jackie

> -- Re: Hello

>

> I am a new member of this group and am not familiar with the

> abbreviations everyone is using... specifically the phrase you used

> was end stage IPF... how do you know? I was diagnosed with

> polymyositis/vasculitus in 2005 - rapid onset - paralyzed to my neck

> before they figured out what it was.. Prednisone gave me back the

> ability to walk that time. Had been shipped to the Twin Cities in

MN

> For treatment, when returned to Fargo, ND ended up in hospital again

> this time with pulmonary emboli (about 7 clots - right lung)

>

> Last year I broke both my feet due to osteoporis brought on by large

> amounts of prednisone (I was also taking immuran and methatrexate).

> This April I had cleaners in to tear out my basement carpet - sump

> pump had failed in the rain, and after they were done blowing stuff

> around wiTh big dryers I ended up in the hospital. (Happened Friday

> Night and on a vent by Monday night). Got off the vent and went

> home; then ended back in the hospital on a ventilator again for

about

> 3-4 weeks, came off doing ok, kidneys failed -- back on ventilator

> until end of June. Just got out of the hospital August 17 after

> relearning how to walk and move. Lost all movement except right arm

> from inactivity.

>

> The second time I was on a vent they did a lung biopsy in my ICU

room

> as I was to ill to transport to the OR. They diagnosed the lung

> issue as Pulmonary Fibrosis. I now use oxegen 24 x 7 , when I

> exercise I have to exercise on 10-15 L of oxegen. When resting or

> not standing I can go with 2.5 or a little more.

>

> What test results (I've probably done them all) can give me a clue

if

> I have only a little time left or more than that? I go to Mayo

again

> next week to see pulmonary docs. Have one here, but like Mayo

too...

> Already have a rheumatoligist at Mayo.

>

> Any information you folks could provide me would be helpful.. I'm

> not trying to be morbid, but I'd like to have a better idea of

when...

>

> Thanks,

> Kristal

>

>

>

>

>

>

>

>

>

>

> ---

>

[Guest guest]

Welcome to both ette and Kristal! You both sound like very

strong people and both seem to be handling it well. I am glad of

that. Kristal I cant imagine all that you have been through and

bravo to you for being so strong and continuing to move forward, what

a great battle warrior you are. You will be a welcome addition to

the group I am sure!

ette, I am sorry for the tough times you and your family have had

to go through. it isnt enough to put ourselves through this but to

have to watch our children in pain is a whole nother ball field so

bravo to you as well!

Sandie

> >

> >

> > Dear Kristal,

> > Sorry to hear that you have gone through so much . Having a

illness

> is never

> > what anyone every wants. The one thing that I have realized that

> any disease

> > try's so hard to take control and leave us stranded in the wind.

> But I do

> > try to fight all the way, and yes some days I am so tried of

> fighting all of

> > it, but I refuse to let my spirt get broke. I have had lupus for

17

> years

> > and had done pretty good with most of it. Little did I know both

of

> my kids

> > would develop Arthritis, our son has systemic JRA and our

daughter

> developed

> > pauci JRA and has tested positive for Lupus. After years of

> watching our son

> > go through so much and he went into remission I become very ill.

I

> have

> > pulmonary fibrosis and pulmonary hypertension along with Lupus

and

> diabetes

> > and HP. The doctors said I have only 2 to 10 years left of my

life

> and all

> > it would take would be just getting a cold. The funny part of all

> of this is

> > they are not God only he knows when my earthly time is over. If

> these

> > illness's have taught me anything it is what does not break you

> will make

> > you a stronger person. I don't look for the end only the beauty

of

> each day.

> > And am truly thankful for each day I wake up and am still able to

> spend time

> > with my family and friends. My heart breaks because I am unable

to

> do the

> > things I used to but just maybe my life is meant to find other

> meanings.

> > Have a wonderful day and God Bless. Jackie

> > -- Re: Hello

> >

> > I am a new member of this group and am not familiar with the

> > abbreviations everyone is using... specifically the phrase you

used

> > was end stage IPF... how do you know? I was diagnosed with

> > polymyositis/vasculitus in 2005 - rapid onset - paralyzed to my

neck

> > before they figured out what it was.. Prednisone gave me back the

> > ability to walk that time. Had been shipped to the Twin Cities

in

> MN

> > For treatment, when returned to Fargo, ND ended up in hospital

again

> > this time with pulmonary emboli (about 7 clots - right lung)

> >

> > Last year I broke both my feet due to osteoporis brought on by

large

> > amounts of prednisone (I was also taking immuran and

methatrexate).

> > This April I had cleaners in to tear out my basement carpet - sump

> > pump had failed in the rain, and after they were done blowing

stuff

> > around wiTh big dryers I ended up in the hospital. (Happened

Friday

> > Night and on a vent by Monday night). Got off the vent and went

> > home; then ended back in the hospital on a ventilator again for

> about

> > 3-4 weeks, came off doing ok, kidneys failed -- back on ventilator

> > until end of June. Just got out of the hospital August 17 after

> > relearning how to walk and move. Lost all movement except right

arm

> > from inactivity.

> >

> > The second time I was on a vent they did a lung biopsy in my ICU

> room

> > as I was to ill to transport to the OR. They diagnosed the lung

> > issue as Pulmonary Fibrosis. I now use oxegen 24 x 7 , when I

> > exercise I have to exercise on 10-15 L of oxegen. When resting or

> > not standing I can go with 2.5 or a little more.

> >

> > What test results (I've probably done them all) can give me a

clue

> if

> > I have only a little time left or more than that? I go to Mayo

> again

> > next week to see pulmonary docs. Have one here, but like Mayo

> too...

> > Already have a rheumatoligist at Mayo.

> >

> > Any information you folks could provide me would be helpful..

I'm

> > not trying to be morbid, but I'd like to have a better idea of

> when...

> >

> > Thanks,

> > Kristal

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > ---

> >

>

[Guest guest]

Welcome to both ette and Kristal! You both sound like very

strong people and both seem to be handling it well. I am glad of

that. Kristal I cant imagine all that you have been through and

bravo to you for being so strong and continuing to move forward, what

a great battle warrior you are. You will be a welcome addition to

the group I am sure!

ette, I am sorry for the tough times you and your family have had

to go through. it isnt enough to put ourselves through this but to

have to watch our children in pain is a whole nother ball field so

bravo to you as well!

Sandie

> >

> >

> > Dear Kristal,

> > Sorry to hear that you have gone through so much . Having a

illness

> is never

> > what anyone every wants. The one thing that I have realized that

> any disease

> > try's so hard to take control and leave us stranded in the wind.

> But I do

> > try to fight all the way, and yes some days I am so tried of

> fighting all of

> > it, but I refuse to let my spirt get broke. I have had lupus for

17

> years

> > and had done pretty good with most of it. Little did I know both

of

> my kids

> > would develop Arthritis, our son has systemic JRA and our

daughter

> developed

> > pauci JRA and has tested positive for Lupus. After years of

> watching our son

> > go through so much and he went into remission I become very ill.

I

> have

> > pulmonary fibrosis and pulmonary hypertension along with Lupus

and

> diabetes

> > and HP. The doctors said I have only 2 to 10 years left of my

life

> and all

> > it would take would be just getting a cold. The funny part of all

> of this is

> > they are not God only he knows when my earthly time is over. If

> these

> > illness's have taught me anything it is what does not break you

> will make

> > you a stronger person. I don't look for the end only the beauty

of

> each day.

> > And am truly thankful for each day I wake up and am still able to

> spend time

> > with my family and friends. My heart breaks because I am unable

to

> do the

> > things I used to but just maybe my life is meant to find other

> meanings.

> > Have a wonderful day and God Bless. Jackie

> > -- Re: Hello

> >

> > I am a new member of this group and am not familiar with the

> > abbreviations everyone is using... specifically the phrase you

used

> > was end stage IPF... how do you know? I was diagnosed with

> > polymyositis/vasculitus in 2005 - rapid onset - paralyzed to my

neck

> > before they figured out what it was.. Prednisone gave me back the

> > ability to walk that time. Had been shipped to the Twin Cities

in

> MN

> > For treatment, when returned to Fargo, ND ended up in hospital

again

> > this time with pulmonary emboli (about 7 clots - right lung)

> >

> > Last year I broke both my feet due to osteoporis brought on by

large

> > amounts of prednisone (I was also taking immuran and

methatrexate).

> > This April I had cleaners in to tear out my basement carpet - sump

> > pump had failed in the rain, and after they were done blowing

stuff

> > around wiTh big dryers I ended up in the hospital. (Happened

Friday

> > Night and on a vent by Monday night). Got off the vent and went

> > home; then ended back in the hospital on a ventilator again for

> about

> > 3-4 weeks, came off doing ok, kidneys failed -- back on ventilator

> > until end of June. Just got out of the hospital August 17 after

> > relearning how to walk and move. Lost all movement except right

arm

> > from inactivity.

> >

> > The second time I was on a vent they did a lung biopsy in my ICU

> room

> > as I was to ill to transport to the OR. They diagnosed the lung

> > issue as Pulmonary Fibrosis. I now use oxegen 24 x 7 , when I

> > exercise I have to exercise on 10-15 L of oxegen. When resting or

> > not standing I can go with 2.5 or a little more.

> >

> > What test results (I've probably done them all) can give me a

clue

> if

> > I have only a little time left or more than that? I go to Mayo

> again

> > next week to see pulmonary docs. Have one here, but like Mayo

> too...

> > Already have a rheumatoligist at Mayo.

> >

> > Any information you folks could provide me would be helpful..

I'm

> > not trying to be morbid, but I'd like to have a better idea of

> when...

> >

> > Thanks,

> > Kristal

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > ---

> >

>

[Guest guest]

I have been reading the posts here.....I found a very special group...I am so

happy I found you.....there is a wealth of information here...

I do eat well, but I still have IBS.....could be stress. I am of Italian

descent so I eat more or less the mediterranean way. My downfall, I think, is I

love bread and Pasta and eat a lot of it...

Divalee

[Guest guest]

Welcome to the group Divalee! We're very happy you found us too.

I have been reading the posts here.....I found a very special group...I am so happy I found you.....there is a wealth of information here...

I do eat well, but I still have IBS.....could be stress. I am of Italian descent so I eat more or less the mediterranean way. My downfall, I think, is I love bread and Pasta and eat a lot of it...

Divalee

[Guest guest]

Welcome to the group Divalee! We're very happy you found us too.

I have been reading the posts here.....I found a very special group...I am so happy I found you.....there is a wealth of information here...

I do eat well, but I still have IBS.....could be stress. I am of Italian descent so I eat more or less the mediterranean way. My downfall, I think, is I love bread and Pasta and eat a lot of it...

Divalee

[Guest guest]

Welcome to the group Divalee! We're very happy you found us too.

I have been reading the posts here.....I found a very special group...I am so happy I found you.....there is a wealth of information here...

I do eat well, but I still have IBS.....could be stress. I am of Italian descent so I eat more or less the mediterranean way. My downfall, I think, is I love bread and Pasta and eat a lot of it...

Divalee