Newbie

October 9, 2007

Welcome Caro,

I"m one of the lurkers, occassional posters - but am always peeking in......my name is . I'm 34, from Kansas City and I have PF as a result of Hermansky-Pudlak Syndrome, a rare type of albinism. Welcome to the group. It sounds like you've got a go-getter attitude! Grin!

www.heatherkirkwood.blogspot.com

Hermansky-Pudlak Syndrome albinism/PF 06

>> Hi All,> > I am SOOO happy to have found this group!!! Just wanted to introduce > myself. I am 46 years old, single (divorced), mom of 3 grown children, > 3 grandsons, have had asthma since around the age of 14. Have had > chronic pneumonia for the last 8 or 9 years. Was diagnosed with COPD > about 2 months ago. Went for chest CT last month and was diagnosed > with pulmonary fibrosis, as well. Had colonoscopy yesterday, and they > gave me oxygen through the procedure and everything turned out ok, > other than the dehydration!!LOL!! I live in upstairs apartment and > some days it is really tough to make it up those stairs!! I have read > info that says life span is around 3 to 6 years if you are lucky. My > oldest grandson is only 9 and I am so determined to stay active, do > whatever it takes to see that I get to see him graduate high school!! > Maybe this an unreal dream, but I am going to give it all I got!!! > > I have read through a few of the posts, and I wanted to wish Fay a > Happy B-day!! I am really looking forward to being part of this group!!> > Have a good one, all!!> > Caro>

October 9, 2007

Welcome Caro,

I"m one of the lurkers, occassional posters - but am always peeking in......my name is . I'm 34, from Kansas City and I have PF as a result of Hermansky-Pudlak Syndrome, a rare type of albinism. Welcome to the group. It sounds like you've got a go-getter attitude! Grin!

www.heatherkirkwood.blogspot.com

Hermansky-Pudlak Syndrome albinism/PF 06

>> Hi All,> > I am SOOO happy to have found this group!!! Just wanted to introduce > myself. I am 46 years old, single (divorced), mom of 3 grown children, > 3 grandsons, have had asthma since around the age of 14. Have had > chronic pneumonia for the last 8 or 9 years. Was diagnosed with COPD > about 2 months ago. Went for chest CT last month and was diagnosed > with pulmonary fibrosis, as well. Had colonoscopy yesterday, and they > gave me oxygen through the procedure and everything turned out ok, > other than the dehydration!!LOL!! I live in upstairs apartment and > some days it is really tough to make it up those stairs!! I have read > info that says life span is around 3 to 6 years if you are lucky. My > oldest grandson is only 9 and I am so determined to stay active, do > whatever it takes to see that I get to see him graduate high school!! > Maybe this an unreal dream, but I am going to give it all I got!!! > > I have read through a few of the posts, and I wanted to wish Fay a > Happy B-day!! I am really looking forward to being part of this group!!> > Have a good one, all!!> > Caro>

October 9, 2007

Hi Caro,

When I was diagnosed and given the 2-4 year expiration date, my oldest grandson was 8. This year he is 18 and is a senior in high school. It can be done!

Welcome to our group!

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Hi All,> > I am SOOO happy to have found this group!!! Just wanted to introduce > myself. I am 46 years old, single (divorced), mom of 3 grown children, > 3 grandsons, have had asthma since around the age of 14. Have had > chronic pneumonia for the last 8 or 9 years. Was diagnosed with COPD > about 2 months ago. Went for chest CT last month and was diagnosed > with pulmonary fibrosis, as well. Had colonoscopy yesterday, and they > gave me oxygen through the procedure and everything turned out ok, > other than the dehydration!!LOL!! I live in upstairs apartment and > some days it is really tough to make it up those stairs!! I have read > info that says life span is around 3 to 6 years if you are lucky. My > oldest grandson is only 9 and I am so determined to stay active, do > whatever it takes to see that I get to see him graduate high school!! > Maybe this an unreal dream, but I am going to give it all I got!!! > > I have read through a few of the posts, and I wanted to wish Fay a > Happy B-day!! I am really looking forward to being part of this group!!> > Have a good one, all!!> > Caro>

October 9, 2007

Hi Caro,

When I was diagnosed and given the 2-4 year expiration date, my oldest grandson was 8. This year he is 18 and is a senior in high school. It can be done!

Welcome to our group!

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Hi All,> > I am SOOO happy to have found this group!!! Just wanted to introduce > myself. I am 46 years old, single (divorced), mom of 3 grown children, > 3 grandsons, have had asthma since around the age of 14. Have had > chronic pneumonia for the last 8 or 9 years. Was diagnosed with COPD > about 2 months ago. Went for chest CT last month and was diagnosed > with pulmonary fibrosis, as well. Had colonoscopy yesterday, and they > gave me oxygen through the procedure and everything turned out ok, > other than the dehydration!!LOL!! I live in upstairs apartment and > some days it is really tough to make it up those stairs!! I have read > info that says life span is around 3 to 6 years if you are lucky. My > oldest grandson is only 9 and I am so determined to stay active, do > whatever it takes to see that I get to see him graduate high school!! > Maybe this an unreal dream, but I am going to give it all I got!!! > > I have read through a few of the posts, and I wanted to wish Fay a > Happy B-day!! I am really looking forward to being part of this group!!> > Have a good one, all!!> > Caro>

October 9, 2007

Hi Caro,

When I was diagnosed and given the 2-4 year expiration date, my oldest grandson was 8. This year he is 18 and is a senior in high school. It can be done!

Welcome to our group!

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Hi All,> > I am SOOO happy to have found this group!!! Just wanted to introduce > myself. I am 46 years old, single (divorced), mom of 3 grown children, > 3 grandsons, have had asthma since around the age of 14. Have had > chronic pneumonia for the last 8 or 9 years. Was diagnosed with COPD > about 2 months ago. Went for chest CT last month and was diagnosed > with pulmonary fibrosis, as well. Had colonoscopy yesterday, and they > gave me oxygen through the procedure and everything turned out ok, > other than the dehydration!!LOL!! I live in upstairs apartment and > some days it is really tough to make it up those stairs!! I have read > info that says life span is around 3 to 6 years if you are lucky. My > oldest grandson is only 9 and I am so determined to stay active, do > whatever it takes to see that I get to see him graduate high school!! > Maybe this an unreal dream, but I am going to give it all I got!!! > > I have read through a few of the posts, and I wanted to wish Fay a > Happy B-day!! I am really looking forward to being part of this group!!> > Have a good one, all!!> > Caro>

October 9, 2007

Welcome Caro!

Sorry you have to deal with the dreaded monster PF. We are all dealing

with it,plus maybe other things as well. (As you do). Personally I

have truly enjoyed reading all the posts to discover what others are

dealing with. As for the life span, no human can put a timetable on

this monster, only God! I have seen my only daughter graduate from high

school and college and now she is looking for a job. I went on the trip

to Chattanooga this past weekend and it was totally awesome to meet the

people I have been talking to. We all have a special bond. We are

going to have another trip next year. I hope lots of people on this

board will want to be there. It is an uplifting experience. Caro, I

will keep you in my thoughts and prayers!

Love & Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>

> Hi All,

>

> I am SOOO happy to have found this group!!! Just wanted to introduce

> myself. I am 46 years old, single (divorced), mom of 3 grown children,

> 3 grandsons, have had asthma since around the age of 14. Have had

> chronic pneumonia for the last 8 or 9 years. Was diagnosed with COPD

> about 2 months ago. Went for chest CT last month and was diagnosed

> with pulmonary fibrosis, as well. Had colonoscopy yesterday, and they

> gave me oxygen through the procedure and everything turned out ok,

> other than the dehydration!!LOL!! I live in upstairs apartment and

> some days it is really tough to make it up those stairs!! I have read

> info that says life span is around 3 to 6 years if you are lucky. My

> oldest grandson is only 9 and I am so determined to stay active, do

> whatever it takes to see that I get to see him graduate high school!!

> Maybe this an unreal dream, but I am going to give it all I got!!!

>

> I have read through a few of the posts, and I wanted to wish Fay a

> Happy B-day!! I am really looking forward to being part of this

group!!

>

> Have a good one, all!!

>

> Caro

>

October 9, 2007

Hi Caro,

Welcome to our group, sometimes we cry, sometimes we laugh but we're always here for each other.

Love,

Vicky81856 MI IPH/PF 4-06See what's new at AOL.com and Make AOL Your Homepage.

October 9, 2007

Hi Caro,

Welcome to our group, sometimes we cry, sometimes we laugh but we're always here for each other.

Love,

Vicky81856 MI IPH/PF 4-06See what's new at AOL.com and Make AOL Your Homepage.

October 9, 2007

Hi Caro,

Welcome to our group, sometimes we cry, sometimes we laugh but we're always here for each other.

Love,

Vicky81856 MI IPH/PF 4-06See what's new at AOL.com and Make AOL Your Homepage.

October 9, 2007

The trip sounds like SOOO much fun!!! I hope I will be able to make it next year!! If you don't mind me asking, how long since your diagnosis? CaroJane wrote: Welcome Caro!Sorry you have to deal with the dreaded monster PF. We are all dealingwith it,plus maybe other things as well. (As you do). Personally Ihave truly enjoyed reading all the posts to discover what others aredealing with. As for the life span, no human can put a timetable onthis

monster, only God! I have seen my only daughter graduate from highschool and college and now she is looking for a job. I went on the tripto Chattanooga this past weekend and it was totally awesome to meet thepeople I have been talking to. We all have a special bond. We aregoing to have another trip next year. I hope lots of people on thisboard will want to be there. It is an uplifting experience. Caro, Iwill keep you in my thoughts and prayers!Love & Toodles!Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> Hi All,>> I am SOOO happy to have found this group!!! Just wanted to introduce> myself. I am 46 years old, single (divorced), mom of 3 grown children,> 3 grandsons, have had asthma since around the age of 14.

Have had> chronic pneumonia for the last 8 or 9 years. Was diagnosed with COPD> about 2 months ago. Went for chest CT last month and was diagnosed> with pulmonary fibrosis, as well. Had colonoscopy yesterday, and they> gave me oxygen through the procedure and everything turned out ok,> other than the dehydration!!LOL!! I live in upstairs apartment and> some days it is really tough to make it up those stairs!! I have read> info that says life span is around 3 to 6 years if you are lucky. My> oldest grandson is only 9 and I am so determined to stay active, do> whatever it takes to see that I get to see him graduate high school!!> Maybe this an unreal dream, but I am going to give it all I got!!!>> I have read through a few of the posts, and I wanted to wish Fay a> Happy B-day!! I am really looking forward to being part of thisgroup!!>> Have a good one,

all!!>> Caro>Love ya lots, Mama

Don't let your dream ride pass you by. Make it a reality with Yahoo! Autos.

October 9, 2007

The trip sounds like SOOO much fun!!! I hope I will be able to make it next year!! If you don't mind me asking, how long since your diagnosis? CaroJane wrote: Welcome Caro!Sorry you have to deal with the dreaded monster PF. We are all dealingwith it,plus maybe other things as well. (As you do). Personally Ihave truly enjoyed reading all the posts to discover what others aredealing with. As for the life span, no human can put a timetable onthis

monster, only God! I have seen my only daughter graduate from highschool and college and now she is looking for a job. I went on the tripto Chattanooga this past weekend and it was totally awesome to meet thepeople I have been talking to. We all have a special bond. We aregoing to have another trip next year. I hope lots of people on thisboard will want to be there. It is an uplifting experience. Caro, Iwill keep you in my thoughts and prayers!Love & Toodles!Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> Hi All,>> I am SOOO happy to have found this group!!! Just wanted to introduce> myself. I am 46 years old, single (divorced), mom of 3 grown children,> 3 grandsons, have had asthma since around the age of 14.

Have had> chronic pneumonia for the last 8 or 9 years. Was diagnosed with COPD> about 2 months ago. Went for chest CT last month and was diagnosed> with pulmonary fibrosis, as well. Had colonoscopy yesterday, and they> gave me oxygen through the procedure and everything turned out ok,> other than the dehydration!!LOL!! I live in upstairs apartment and> some days it is really tough to make it up those stairs!! I have read> info that says life span is around 3 to 6 years if you are lucky. My> oldest grandson is only 9 and I am so determined to stay active, do> whatever it takes to see that I get to see him graduate high school!!> Maybe this an unreal dream, but I am going to give it all I got!!!>> I have read through a few of the posts, and I wanted to wish Fay a> Happy B-day!! I am really looking forward to being part of thisgroup!!>> Have a good one,

all!!>> Caro>Love ya lots, Mama

Don't let your dream ride pass you by. Make it a reality with Yahoo! Autos.

October 9, 2007

The trip sounds like SOOO much fun!!! I hope I will be able to make it next year!! If you don't mind me asking, how long since your diagnosis? CaroJane wrote: Welcome Caro!Sorry you have to deal with the dreaded monster PF. We are all dealingwith it,plus maybe other things as well. (As you do). Personally Ihave truly enjoyed reading all the posts to discover what others aredealing with. As for the life span, no human can put a timetable onthis

monster, only God! I have seen my only daughter graduate from highschool and college and now she is looking for a job. I went on the tripto Chattanooga this past weekend and it was totally awesome to meet thepeople I have been talking to. We all have a special bond. We aregoing to have another trip next year. I hope lots of people on thisboard will want to be there. It is an uplifting experience. Caro, Iwill keep you in my thoughts and prayers!Love & Toodles!Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> Hi All,>> I am SOOO happy to have found this group!!! Just wanted to introduce> myself. I am 46 years old, single (divorced), mom of 3 grown children,> 3 grandsons, have had asthma since around the age of 14.

Have had> chronic pneumonia for the last 8 or 9 years. Was diagnosed with COPD> about 2 months ago. Went for chest CT last month and was diagnosed> with pulmonary fibrosis, as well. Had colonoscopy yesterday, and they> gave me oxygen through the procedure and everything turned out ok,> other than the dehydration!!LOL!! I live in upstairs apartment and> some days it is really tough to make it up those stairs!! I have read> info that says life span is around 3 to 6 years if you are lucky. My> oldest grandson is only 9 and I am so determined to stay active, do> whatever it takes to see that I get to see him graduate high school!!> Maybe this an unreal dream, but I am going to give it all I got!!!>> I have read through a few of the posts, and I wanted to wish Fay a> Happy B-day!! I am really looking forward to being part of thisgroup!!>> Have a good one,

all!!>> Caro>Love ya lots, Mama

Don't let your dream ride pass you by. Make it a reality with Yahoo! Autos.

October 9, 2007

Thanks so much for the encouragement!! Just reading some of the posts, so many of you are so further advanced in the disease process than me. I feel fortunate just being a part of the group. For me, I do fairly well, with the nebulizer and the inhalers (I haven't reached the oxygen stage yet, but they say it is coming soon). I hate the panic attacks, though, when I can't get a breath. I am so glad to hear so many of you are making beyond the death sentence!!LOL!! I know I have the willpower mentally, just some days the old body doesn't agree!! Please let me know if I can help anyone or if you all just want to chat!! CaroJoyce wrote: Hi Caro, When I was diagnosed and given the 2-4 year expiration date, my oldest grandson was 8. This year he is 18 and is a senior in high school. It can be done! Welcome to our group! Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Hi All,> > I am SOOO happy to have found this group!!! Just wanted to introduce > myself. I am 46 years old, single (divorced), mom of 3 grown children, > 3 grandsons, have had asthma since around the age of 14. Have had > chronic pneumonia for the last 8 or 9 years. Was diagnosed with COPD > about 2 months ago. Went for chest CT last month and was diagnosed > with pulmonary fibrosis, as well. Had colonoscopy yesterday, and they > gave me oxygen through the procedure and everything turned out ok, > other than the dehydration!!LOL!! I live in upstairs apartment and > some days it is really tough to make it up those stairs!! I have read > info that says life span is around 3 to 6 years if you are lucky. My > oldest grandson is only 9 and I am so determined to stay active, do

> whatever it takes to see that I get to see him graduate high school!! > Maybe this an unreal dream, but I am going to give it all I got!!! > > I have read through a few of the posts, and I wanted to wish Fay a > Happy B-day!! I am really looking forward to being part of this group!!> > Have a good one, all!!> > Caro> Love ya lots, Mama

Yahoo! oneSearch: Finally, mobile search that gives answers, not web links.

October 9, 2007

Thanks so much for the encouragement!! Just reading some of the posts, so many of you are so further advanced in the disease process than me. I feel fortunate just being a part of the group. For me, I do fairly well, with the nebulizer and the inhalers (I haven't reached the oxygen stage yet, but they say it is coming soon). I hate the panic attacks, though, when I can't get a breath. I am so glad to hear so many of you are making beyond the death sentence!!LOL!! I know I have the willpower mentally, just some days the old body doesn't agree!! Please let me know if I can help anyone or if you all just want to chat!! CaroJoyce wrote: Hi Caro, When I was diagnosed and given the 2-4 year expiration date, my oldest grandson was 8. This year he is 18 and is a senior in high school. It can be done! Welcome to our group! Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Hi All,> > I am SOOO happy to have found this group!!! Just wanted to introduce > myself. I am 46 years old, single (divorced), mom of 3 grown children, > 3 grandsons, have had asthma since around the age of 14. Have had > chronic pneumonia for the last 8 or 9 years. Was diagnosed with COPD > about 2 months ago. Went for chest CT last month and was diagnosed > with pulmonary fibrosis, as well. Had colonoscopy yesterday, and they > gave me oxygen through the procedure and everything turned out ok, > other than the dehydration!!LOL!! I live in upstairs apartment and > some days it is really tough to make it up those stairs!! I have read > info that says life span is around 3 to 6 years if you are lucky. My > oldest grandson is only 9 and I am so determined to stay active, do

> whatever it takes to see that I get to see him graduate high school!! > Maybe this an unreal dream, but I am going to give it all I got!!! > > I have read through a few of the posts, and I wanted to wish Fay a > Happy B-day!! I am really looking forward to being part of this group!!> > Have a good one, all!!> > Caro> Love ya lots, Mama

Yahoo! oneSearch: Finally, mobile search that gives answers, not web links.

October 9, 2007

Thanks so much for the encouragement!! Just reading some of the posts, so many of you are so further advanced in the disease process than me. I feel fortunate just being a part of the group. For me, I do fairly well, with the nebulizer and the inhalers (I haven't reached the oxygen stage yet, but they say it is coming soon). I hate the panic attacks, though, when I can't get a breath. I am so glad to hear so many of you are making beyond the death sentence!!LOL!! I know I have the willpower mentally, just some days the old body doesn't agree!! Please let me know if I can help anyone or if you all just want to chat!! CaroJoyce wrote: Hi Caro, When I was diagnosed and given the 2-4 year expiration date, my oldest grandson was 8. This year he is 18 and is a senior in high school. It can be done! Welcome to our group! Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Hi All,> > I am SOOO happy to have found this group!!! Just wanted to introduce > myself. I am 46 years old, single (divorced), mom of 3 grown children, > 3 grandsons, have had asthma since around the age of 14. Have had > chronic pneumonia for the last 8 or 9 years. Was diagnosed with COPD > about 2 months ago. Went for chest CT last month and was diagnosed > with pulmonary fibrosis, as well. Had colonoscopy yesterday, and they > gave me oxygen through the procedure and everything turned out ok, > other than the dehydration!!LOL!! I live in upstairs apartment and > some days it is really tough to make it up those stairs!! I have read > info that says life span is around 3 to 6 years if you are lucky. My > oldest grandson is only 9 and I am so determined to stay active, do

> whatever it takes to see that I get to see him graduate high school!! > Maybe this an unreal dream, but I am going to give it all I got!!! > > I have read through a few of the posts, and I wanted to wish Fay a > Happy B-day!! I am really looking forward to being part of this group!!> > Have a good one, all!!> > Caro> Love ya lots, Mama

Yahoo! oneSearch: Finally, mobile search that gives answers, not web links.

October 9, 2007

Caro,

December, 1998 Jane UIP/IPF

> >

> > Hi All,

> >

> > I am SOOO happy to have found this group!!! Just wanted to introduce

> > myself. I am 46 years old, single (divorced), mom of 3 grown

children,

> > 3 grandsons, have had asthma since around the age of 14. Have had

> > chronic pneumonia for the last 8 or 9 years. Was diagnosed with COPD

> > about 2 months ago. Went for chest CT last month and was diagnosed

> > with pulmonary fibrosis, as well. Had colonoscopy yesterday, and

they

> > gave me oxygen through the procedure and everything turned out ok,

> > other than the dehydration!!LOL!! I live in upstairs apartment and

> > some days it is really tough to make it up those stairs!! I have

read

> > info that says life span is around 3 to 6 years if you are lucky. My

> > oldest grandson is only 9 and I am so determined to stay active, do

> > whatever it takes to see that I get to see him graduate high

school!!

> > Maybe this an unreal dream, but I am going to give it all I got!!!

> >

> > I have read through a few of the posts, and I wanted to wish Fay a

> > Happy B-day!! I am really looking forward to being part of this

> group!!

> >

> > Have a good one, all!!

> >

> > Caro

> >

>

> Love ya lots,

> Mama

>

> ---------------------------------

> Don't let your dream ride pass you by. Make it a reality with Yahoo!

Autos.

>

October 9, 2007

Caro, when I was diagnosed in early 2005 my pulmonologist gave me what information he could. Last thing he said as I walked out the door was "do not go home and look it (IPF) up on the internet, it will just scare the crap out of you". So, of course, that's just what I did..........and it did!! Now.....this is me, thankfully everyone is not like me, but it took me over a year to get it in my head that my death was not imminent. Oh, it's out there somewhere, but I've stopped living my life as if it were tomorrow. I will see my daughter graduate high school in the Spring of 2009. Heck, I may even be around when she marries and has kids, and that's after college. My pulmonologist is the best, because he is not afraid to say "I don't know". Some patients may find that troubling, I have worked around M.D.s my whole adult life and I found that very refreshing. I recently heard that there are over 200 lung conditions related to

disease. I personally believe, based on what I've learned right here on this site, that the whole "2 to 6 years" thing is inaccurate and misleading. That's only my opinion.Your years of chronic pneumonia...my goodness, you've been through it. You sound like you have an excellent attitude and, as you know, that is so important. Keep writing !! jimcarowade4444 wrote: Hi All,I am SOOO happy to have found this group!!! Just wanted to introduce myself. I am 46 years old, single

(divorced), mom of 3 grown children, 3 grandsons, have had asthma since around the age of 14. Have had chronic pneumonia for the last 8 or 9 years. Was diagnosed with COPD about 2 months ago. Went for chest CT last month and was diagnosed with pulmonary fibrosis, as well. Had colonoscopy yesterday, and they gave me oxygen through the procedure and everything turned out ok, other than the dehydration!!LOL!! I live in upstairs apartment and some days it is really tough to make it up those stairs!! I have read info that says life span is around 3 to 6 years if you are lucky. My oldest grandson is only 9 and I am so determined to stay active, do whatever it takes to see that I get to see him graduate high school!! Maybe this an unreal dream, but I am going to give it all I got!!! I have read through a few of the posts, and I wanted to wish Fay a Happy B-day!! I am really looking forward to being part of this

group!!Have a good one, all!!Caro

Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase.

October 10, 2007

Thank you so much, Jim, for the encouragement. I appreciate everything you wrote!! I am still so confused about this disease. Like you, I have worked around medical professionals all my adult life. I do medical transcription, so I am somewhat privy to the realm of this disease, but not nearly enough until I was actually diagnosed, and like you, I went straight to the Internet!! And it SCARED ME TO DEATH!! I am just like I said, trying to focus on the positive but it is so hard when some days you just wake up and you cannot go. I have always been a "hit the floor running" type of person and to wake up short of breath one day and not want to get up is totally beyond me. I have read so far so many people have far advanced stages of this disease than me, and I am so fortunate to be only as far as I am. It is really hard to know sometimes you have a grim future to look forward to, but I guess a grim future is better

than no future at all and that is what I am focusing on. This is really hard but I feel like with the help of people like you, Jim, and the help of this group, I can get through it. Hope you all have a good night. Carojames wallman wrote: Caro, when I was diagnosed in early 2005 my pulmonologist gave me what information he could. Last thing he said as I walked out the door was "do not go home and look it (IPF) up on the internet, it

will just scare the crap out of you". So, of course, that's just what I did..........and it did!! Now.....this is me, thankfully everyone is not like me, but it took me over a year to get it in my head that my death was not imminent. Oh, it's out there somewhere, but I've stopped living my life as if it were tomorrow. I will see my daughter graduate high school in the Spring of 2009. Heck, I may even be around when she marries and has kids, and that's after college. My pulmonologist is the best, because he is not afraid to say "I don't know". Some patients may find that troubling, I have worked around M.D.s my whole adult life and I found that very refreshing. I recently heard that there are over 200 lung conditions related to disease. I personally believe, based on what I've learned right here on this site, that the whole "2 to 6 years" thing is inaccurate and misleading. That's only my opinion.Your years of chronic

pneumonia...my goodness, you've been through it. You sound like you have an excellent attitude and, as you know, that is so important. Keep writing !! jimcarowade4444 <carowade4444> wrote: Hi All,I am SOOO happy to have found this group!!! Just wanted to introduce myself. I am 46 years old, single (divorced), mom of 3 grown children, 3 grandsons, have had asthma since around the age of 14. Have had chronic pneumonia for the last 8 or 9 years. Was diagnosed with COPD about 2 months ago. Went for chest CT last month and was diagnosed with pulmonary fibrosis, as well. Had colonoscopy yesterday, and they gave me oxygen through the procedure and everything turned out ok, other than the dehydration!!LOL!! I live in upstairs apartment and some days it is really

tough to make it up those stairs!! I have read info that says life span is around 3 to 6 years if you are lucky. My oldest grandson is only 9 and I am so determined to stay active, do whatever it takes to see that I get to see him graduate high school!! Maybe this an unreal dream, but I am going to give it all I got!!! I have read through a few of the posts, and I wanted to wish Fay a Happy B-day!! I am really looking forward to being part of this group!!Have a good one, all!!Caro Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase. Love ya lots, Mama

Need a vacation? Get great deals to amazing places on Yahoo! Travel.

October 10, 2007

Glad to "meet" you, Vicky. I hope we will laugh and cry together for a long time to come. CaroLadyvic1@... wrote: Hi Caro, Welcome to our group, sometimes we cry, sometimes we laugh but we're always here for each other. Love, Vicky81856 MI IPH/PF 4-06 See what's new at AOL.com and Make AOL Your Homepage. Love ya lots, Mama

Check out the hottest 2008 models today at Yahoo! Autos.

October 10, 2007

We all have to deal with this in the way best for us. Jim wrote as to

being told not to look on the internet. First, like him, I wouldn't

have listened. Second, glad I didn't.

I am a planner, even with a disease that the plan is unpredictable.

However, I do best when I know the best cases, worst cases, and

norms. I feel more in control with knowledge. I want to know the

options. I want to understand what the likely stages are and what

I'll be capable of at each stage. Even if things go nothing like my

plan, I'm happier with a plan. For instance, I've been looking at a

train trip from Texas to Vancouver, British Columbia that I never

would have before. Thats based on knowledge that the time I have

feeling as good as I do today may be limited so if I want to go there

better get myself in gear and enjoy it. Now, others are more

comfortable just going forward day to day and not thinking of whats

ahead.

As to the internet, its a lot better than the cold, hard facts of you

have this disease with an average lifespan of this many years and

there is no treatment. Here, I get to hear from people who are much

further along than I am and enjoying life and I get to talk to those

who defy all those statistics. Here, I find out how others travel

with the disease and with oxygen.

Yes, I would prefer to come here and find out that I have 40 years to

live and will be in perfect health all of those. What I have found

out is that I don't know how long I'll live, that my condition will

deteriorate as time goes on, and that I can make the most out of all

that time. While I'm healthy enough for long trips, then they may be

part of my plan. When its just short overnighters, then so be it.

When traveling is more of a burden that the pleasure derived then

I'll travel virtually.

Every piece of information, even the negative, helps me because I

just feel more knowledgeable. I then try to figure out how to use

that knowledge or if its information to just accept but not let

impact my life day to day.

In some ways this is scary. But in other ways it sort of wakes me up.

I always knew death was inevitable. That hasn't changed. Now I know

my actuarial tables may be wrong, but I never was convinced that I

would live to be exactly 72.4, plus the numbers changed every year

much like the Soup De Jour changes daily. What I've been reminded of

is to make the most of each day whatever your condition. Before the

news, most of us are more inclined to take things for granted and put

things off. Well, I'm not going to do that now.

When we were younger we had these discussions of what we'd do if we

were told we had one year to live or others of us made a list of

things we wanted to do in our lives. Most of us weren't real smart

though. Those things on our lists, are largely still there undone.

Maybe its time to remake those lists within reason based on our

diseases. Then, we should get to work on them and it doesn't really

matter how many we get done as long as we're doing all along.

I challenge myself right now and everyone else here to make a list

based on your current condition of the five things that you'd love to

do that today you're capable of, then get to it. If you do them, make

another list. If your health declines to where some are no longer

possible make a new one.

Today, it might be a long trip that tops your list. At a future date

your most aggressive might be spending the weekend at a spa two hours

away. Later it might be to make sure I spend some time chatting with

a certain group of people or to get myself a large flat screen tv as

I'm less mobile.

Omg, I must get busy. There are so many things I've never done. I've

got to sort through them......never camped out or slept under the

stars......never been to a bed and breakfast.........never been to a

nice spa.......never taken a cross country trip by car or train (oh

been everywhere on business but that doesn't count).....never been

sky diving and not about to......lol.......oh, and the musicals that

come here that I've never been to and the concerts......never been to

a horse race.......

That was with 5 minutes worth of thought. We need to all get and stay

busy living.

> Hi All,

>

> I am SOOO happy to have found this group!!! Just wanted to

introduce

> myself. I am 46 years old, single (divorced), mom of 3 grown

children,

> 3 grandsons, have had asthma since around the age of 14. Have had

> chronic pneumonia for the last 8 or 9 years. Was diagnosed with

COPD

> about 2 months ago. Went for chest CT last month and was diagnosed

> with pulmonary fibrosis, as well. Had colonoscopy yesterday, and

they

> gave me oxygen through the procedure and everything turned out ok,

> other than the dehydration!!LOL!! I live in upstairs apartment and

> some days it is really tough to make it up those stairs!! I have

read

> info that says life span is around 3 to 6 years if you are lucky.

My

> oldest grandson is only 9 and I am so determined to stay active, do

> whatever it takes to see that I get to see him graduate high

school!!

> Maybe this an unreal dream, but I am going to give it all I got!!!

>

> I have read through a few of the posts, and I wanted to wish Fay a

> Happy B-day!! I am really looking forward to being part of this

group!!

>

> Have a good one, all!!

>

> Caro

>

> ---------------------------------

> Looking for a deal? Find great prices on flights and hotels with

Yahoo! FareChase.

>

> Love ya lots,

> Mama

>

> ---------------------------------

> Need a vacation? Get great deals to amazing places on Yahoo! Travel.

>

October 11, 2007

, I love your attitude! I have had a plan and a list since I first got the diagnosis and it has helped so much -plus I have had so much fun. So far, I've done the bed and breakfast ( in Laguna Beach), the musical ( Wicked), rented a beach house with all my kids, traveled to see everyone I wanted to and I am taking a cruise in January. My new list is to repeat all of the above for next year. Good luck with your list. I vote for sleeping under the stars first-it's cheap and an unforgettable experience. God bless you- Sarcoid/PF 3/2006 wrote: We all have to deal with this in the way best for us. Jim wrote as to being told not to look on the internet. First, like him, I wouldn't have listened. Second, glad I didn't. I am a planner, even with a disease that the plan is unpredictable. However, I do best when I know the best cases, worst cases, and norms. I feel more in control with knowledge. I want to know the options. I want to understand what the likely stages are and what I'll be capable of at each stage. Even if things go nothing like my plan, I'm happier with a plan. For instance, I've been looking at a train trip from Texas to Vancouver, British Columbia that I never would have before. Thats based on knowledge that the time I have feeling as good as I do today may be limited so if I want to go there better get myself in gear and enjoy it. Now, others are more

comfortable just going forward day to day and not thinking of whats ahead. As to the internet, its a lot better than the cold, hard facts of you have this disease with an average lifespan of this many years and there is no treatment. Here, I get to hear from people who are much further along than I am and enjoying life and I get to talk to those who defy all those statistics. Here, I find out how others travel with the disease and with oxygen. Yes, I would prefer to come here and find out that I have 40 years to live and will be in perfect health all of those. What I have found out is that I don't know how long I'll live, that my condition will deteriorate as time goes on, and that I can make the most out of all that time. While I'm healthy enough for long trips, then they may be part of my plan. When its just short overnighters, then so be it. When traveling is more of a burden that the

pleasure derived then I'll travel virtually. Every piece of information, even the negative, helps me because I just feel more knowledgeable. I then try to figure out how to use that knowledge or if its information to just accept but not let impact my life day to day. In some ways this is scary. But in other ways it sort of wakes me up. I always knew death was inevitable. That hasn't changed. Now I know my actuarial tables may be wrong, but I never was convinced that I would live to be exactly 72.4, plus the numbers changed every year much like the Soup De Jour changes daily. What I've been reminded of is to make the most of each day whatever your condition. Before the news, most of us are more inclined to take things for granted and put things off. Well, I'm not going to do that now. When we were younger we had these discussions of what we'd do if we were told we had one year to live

or others of us made a list of things we wanted to do in our lives. Most of us weren't real smart though. Those things on our lists, are largely still there undone. Maybe its time to remake those lists within reason based on our diseases. Then, we should get to work on them and it doesn't really matter how many we get done as long as we're doing all along. I challenge myself right now and everyone else here to make a list based on your current condition of the five things that you'd love to do that today you're capable of, then get to it. If you do them, make another list. If your health declines to where some are no longer possible make a new one. Today, it might be a long trip that tops your list. At a future date your most aggressive might be spending the weekend at a spa two hours away. Later it might be to make sure I spend some time chatting with a certain group of people or to get myself

a large flat screen tv as I'm less mobile. Omg, I must get busy. There are so many things I've never done. I've got to sort through them......never camped out or slept under the stars......never been to a bed and breakfast.........never been to a nice spa.......never taken a cross country trip by car or train (oh been everywhere on business but that doesn't count).....never been sky diving and not about to......lol.......oh, and the musicals that come here that I've never been to and the concerts......never been to a horse race....... That was with 5 minutes worth of thought. We need to all get and stay busy living. > Hi All, > > I am SOOO happy to have found this group!!! Just wanted to introduce > myself. I am 46 years old, single (divorced), mom of 3 grown

children, > 3 grandsons, have had asthma since around the age of 14. Have had > chronic pneumonia for the last 8 or 9 years. Was diagnosed with COPD > about 2 months ago. Went for chest CT last month and was diagnosed > with pulmonary fibrosis, as well. Had colonoscopy yesterday, and they > gave me oxygen through the procedure and everything turned out ok, > other than the dehydration!!LOL!! I live in upstairs apartment and > some days it is really tough to make it up those stairs!! I have read > info that says life span is around 3 to 6 years if you are lucky. My > oldest grandson is only 9 and I am so determined to stay active, do > whatever it takes to see that I get to see him graduate high school!! > Maybe this an unreal dream, but I am going to give it all I got!!! > > I have read through a few of the posts, and I wanted to wish

Fay a > Happy B-day!! I am really looking forward to being part of this group!! > > Have a good one, all!! > > Caro > > > > > > --------------------------------- > Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase. > > > > > Love ya lots, > Mama > > --------------------------------- > Need a vacation? Get great deals to amazing places on Yahoo! Travel. > Sarcoid/PF 3/2006

Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online.

October 11, 2007

Well , I do believe you GOT it.. we Do have life to live " Just

do It " that comes through on this board,

Don't let fear and dread paralyze you. God is with us and through him

all things are possible. I went to the top of

Look Out Mountain for heavens sake. I fee like I won the Olympics.

God Bless you as you learn to live with this monster.

I think that is one of the main things

Love and Prayers, Peggy

ipf 6/04 Florida

" Worry looks around,

Sorry looks back,

Faith looks up. "