New to the Group

[Guest guest]

Your philosophy is flawless Bruce, so you are at peace and I am sure it helps in

healing your ailing body.

'Anger' I too do not have.

Thanks and take care

Geeta

> > > >

> > > >

> > > > From: Beth mbmurtha@

> > > > Subject: Re: new to the group

> > > > To: Breathe-Support

> > > > Date: Wednesday, December 2, 2009, 8:26 AM

> > > >

> > > >

> > > > Â

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > Patti,

> > > > Welcome to Breathe Support!! It's lousy that you have reason

> to

> > > look for a group like this but I hope that you find it asÂ

> helpful

> > > as I have over the last 3 and a half years.

> > > > It sounds like you are doing all the right stuff. I'm so happy to

> hear

> > > you are going to the University of Chicago. They have a great

> reputation

> > > and I'm certain you will learn a ton regarding your own situation

> and

> > > how to approach the new realities.

> > > > Take things one step at a time and please don't panic about what

> you

> > > read on the internet. I was diagnosed 3 and a half years ago and I'm

> in

> > > EXACTLY the same condition I was at that time. I've been stable for

> 3

> > > and a half years. We have a member who is I think ten or twelve

> years

> > > out from diagnosis and is stable. So the moral of the story is,

> there is

> > > no expiration date tatooed on your fanny!

> > > > Please continue to read and ask whatever questions you have. We're

> > > here to help!

> > > >

> > > > Â

> > > > Beth

> > > > Moderator

> > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> > > > Â

> > > > Â

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > From: emma0850 napa73 (AT) comcast (DOT) net>

> > > > To: Breathe-Support@ yahoogroups. com

> > > > Sent: Tue, December 1, 2009 10:35:47 PM

> > > > Subject: new to the group

> > > >

> > > > Â

> > > >

> > > > Hello everyone.... .I just found this group today and I couldn't

> be

> > > happier to find all of you! My name is Patti.....I am 59 yrs old and

> was

> > > told three years ago that I had pulmonary fibrosis in my lung bases.

> I

> > > went through the entire ordeal of test after test and was told it

> was so

> > > mild that they thought it may have been there for years. I continued

> to

> > > do all the follow up tests each year and until now it had remained

> > > unchanged. This past month the tests showed it has now progressed to

> the

> > > entire lung area. My PFT had dropped from 79 to 60 in two years. I

> still

> > > feel just fine but the doctor says it is time for Prednisone. I have

> an

> > > appt in Chicago this month with a new doctor. I have read volumes of

> > > information on the internet and most of the info I read just scares

> me.

> > > They make it sound like a death sentence. Again I am so happy to

> find

> > > this group!!

> > > >

> > >

> >

>

[Guest guest]

Dyane...hilarious!! C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Wed, December 2, 2009 10:06:50 PMSubject: Re: new to the group

Sher, When you said that many have several years notched in our o2 tanks, all I could of was Pat Benetar singing Hit Me With Your Best Shot and singing 'put another notch in your o2 tank' instead of lipstick case ha haha. I took a xanax tonight and sure feel better. The ideas I get....Dyane, 54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis, Lipodermatosclerosi s, Diabetes, and now a RA like autoimmune component, yadda yadda yadda."Life is not a journey to the grave with intentions of arriving is a pretty, well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, chocolate in one hand, Margaritas in the other, loudly proclaiming "Holy **** What a

ride!"."> >> > Patti... a good friend, Geeta, in India, is past 13 years now. I think that is correct. She is in a wheelchair but remains so pleasant. do be sure and catch her posts. Her outlook is wonderful. > > There are many with a number of years notched on their o2 tanks (lol). I for sure, never thought I would see even 4 years! And yet, here I am. > > When I read your post of questions I could 'feel' how anxious you are to find answers. What works for one may not work for another. There are so many variables! You will learn to trust yourself. If it

works, don't fix it. > > I do avoid people who are ill...especially my little grandkids. They can bring stuff home from from school so easily. It's hard to catch them when they are all 'ok'.> > Just keep on keepin' on kiddo and try not to worry and fret about every move and encounter. It's easy to push ourselves over the edge of common sense if stay in high stress most of the time.> > > > > > MamaSher; 71, IPF 3-2006, OR.> > Don't fret about tomorrow, God is already there!> > Re: new to the group> > > > > > > > > > Thank you MamaSher for your comments.... ...I too scared my husband to death when I first started reading the internet on

IPF.....I immediately bust out in tears and had him in tears too!! I am just overwhelmed with the amount of people on this site that have had this for years....... that is so encouraging! !!> > Patti, 59, Indianapolis, IPF 2007> >>

[Guest guest]

, Can't ya just see it though! We need to write a parody, then we can go on uTubeBoobTube singing and danceing with our E tanks.Dyane,

54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis,

Lipodermatosclerosis, Diabetes, and now a RA like autoimmune component,

yadda yadda yadda."Life is not a journey to the grave with

intentions of arriving is a pretty, well-preserved body, but rather to

skid in broadside, thoroughly used up, totally worn out, chocolate in

one hand, Margaritas in the other, loudly proclaiming "Holy **** What a

ride!"."> > >> > > Patti... a good friend, Geeta, in India, is past 13 years now. I think that is correct. She is in a wheelchair but remains so pleasant. do be sure and catch her posts. Her outlook is wonderful. > > > There are many with a number of years notched on their o2 tanks (lol). I for sure, never thought I would see even 4 years! And yet, here I am. > > > When I read your post of questions I could 'feel' how anxious you are to find answers. What works for one may not work for another. There are so many variables! You will learn to trust yourself. If it works, don't fix it. > > > I do avoid people who are ill...especially my little grandkids. They can bring stuff home from from school so easily. It's hard to catch them when they are all 'ok'.> > > Just keep on keepin' on kiddo and try not to worry and fret about every move and encounter. It's easy to push ourselves over the edge of common sense if stay in high stress most of the time.> > > > > > > > > MamaSher; 71, IPF 3-2006, OR.> > > Don't fret about tomorrow, God is already there!> > > Re: new to the group> > > > > > > > > > > > > > > Thank you MamaSher for your comments.... ...I too scared my husband to death when I first started reading the internet on IPF......I immediately bust out in tears and had him in tears too!! I am just overwhelmed with the amount of people on this site that have had this for years........ that is so encouraging! !!> > > Patti, 59, Indianapolis, IPF 2007> > >> >>

[Guest guest]

Whatever the evil little voice it it ties my tubing in knots too.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: Re: new to the groupTo: Breathe-Support Date: Thursday, December 3, 2009, 6:20 PM

In the middle of the night I can hear it whispering, "I'm alive, I'm alive Mmmwwwaaaaaaha ha ah ah ha" in an evil little voice......What I want to know is how do I manage to tie it in knots? I'll suddenly realize I'm dragging a large clump behind me and there are always one or two slip knots in there that I can't get out without taking the hose off my face! Now I know I'm not jumping rope with the damn thing so what gives?Dyane,

54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis,

Lipodermatosclerosi s, Diabetes, and now a RA like autoimmune component,

yadda yadda yadda."Life is not a journey to the grave with

intentions of arriving is a pretty, well-preserved body, but rather to

skid in broadside, thoroughly used up, totally worn out, chocolate in

one hand, Margaritas in the other, loudly proclaiming "Holy **** What a

ride!"."> >> >> > From: Beth mbmurtha@> > Subject: Re: new to the group> > To: Breathe-Support@> yahoogroups. com> > Date: Wednesday, December 2, 2009, 8:26 AM> >> >> > Â> >> >> >> >> >> >> > Patti,> > Welcome to Breathe Support!! It's lousy that you have reason to> look for a group like this but I hope that you find it as helpful> as I have over the last 3 and a half years.> > It

sounds like you are doing all the right stuff. I'm so happy to hear> you are going to the University of Chicago. They have a great reputation> and I'm certain you will learn a ton regarding your own situation and> how to approach the new realities.> > Take things one step at a time and please don't panic about what you> read on the internet. I was diagnosed 3 and a half years ago and I'm in> EXACTLY the same condition I was at that time. I've been stable for 3> and a half years. We have a member who is I think ten or twelve years> out from diagnosis and is stable. So the> moral of the story is, there is> no expiration date tatooed on your fanny!> > Please continue to read and ask whatever questions you have. We're> here to help!> >> > Â> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis

11/08> > Â> > Â> >> >> >> >> >> >> > From: emma0850 napa73 (AT) comcast (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tue, December 1, 2009 10:35:47 PM> > Subject: new to the group> >> > Â> >> > Hello everyone.... .I just found this group today and I couldn't be> happier to find all of you! My name is Patti.....I am 59 yrs old and was> told three years ago that I had pulmonary fibrosis in my lung bases. I> went through the entire ordeal of test after test and was told it was so> mild that they thought it may have been there for years. I continued to> do all the follow up> tests each year and until now it had remained> unchanged. This past month the tests showed it has now progressed to the> entire lung

area. My PFT had dropped from 79 to 60 in two years. I still> feel just fine but the doctor says it is time for Prednisone. I have an> appt in Chicago this month with a new doctor. I have read volumes of> information on the internet and most of the info I read just scares me.> They make it sound like a death sentence. Again I am so happy to find> this group!!> >>

[Guest guest]

dyanne

i sleep with the tubing under my t-shirt

it helps keep it in place

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: new to the groupTo: Breathe-Support Date: Thursday, December 3, 2009, 9:20 PM

In the middle of the night I can hear it whispering, "I'm alive, I'm alive Mmmwwwaaaaaaha ha ah ah ha" in an evil little voice......What I want to know is how do I manage to tie it in knots? I'll suddenly realize I'm dragging a large clump behind me and there are always one or two slip knots in there that I can't get out without taking the hose off my face! Now I know I'm not jumping rope with the damn thing so what gives?Dyane, 54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis, Lipodermatosclerosi s, Diabetes, and now a RA like autoimmune component, yadda yadda yadda."Life is not a journey to the grave with intentions of arriving is a pretty, well-preserved body, but rather to skid in broadside,

thoroughly used up, totally worn out, chocolate in one hand, Margaritas in the other, loudly proclaiming "Holy **** What a ride!"."

> >> >> > From: Beth mbmurtha@> > Subject: Re: new to the group> > To: Breathe-Support@> yahoogroups. com> > Date: Wednesday, December 2, 2009, 8:26 AM> >> >> > Â> >> >> >> >> >> >> > Patti,> > Welcome to Breathe Support!! It's lousy that you have reason to> look for a group like this but I hope that you find it as helpful> as I have over the last 3 and a half years.> > It sounds like you are doing all the right stuff. I'm so happy to hear> you are

going to the University of Chicago. They have a great reputation> and I'm certain you will learn a ton regarding your own situation and> how to approach the new realities.> > Take things one step at a time and please don't panic about what you> read on the internet. I was diagnosed 3 and a half years ago and I'm in> EXACTLY the same condition I was at that time. I've been stable for 3> and a half years. We have a member who is I think ten or twelve years> out from diagnosis and is stable. So the> moral of the story is, there is> no expiration date tatooed on your fanny!> > Please continue to read and ask whatever questions you have. We're> here to help!> >> > Â> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > Â> > Â> >> >> >>

>> >> >> > From: emma0850 napa73 (AT) comcast (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tue, December 1, 2009 10:35:47 PM> > Subject: new to the group> >> > Â> >> > Hello everyone.... .I just found this group today and I couldn't be> happier to find all of you! My name is Patti.....I am 59 yrs old and was> told three years ago that I had pulmonary fibrosis in my lung bases. I> went through the entire ordeal of test after test and was told it was so> mild that they thought it may have been there for years. I continued to> do all the follow up> tests each year and until now it had remained> unchanged. This past month the tests showed it has now progressed to the> entire lung area. My PFT had dropped from 79 to 60 in two years. I still> feel just fine but the

doctor says it is time for Prednisone. I have an> appt in Chicago this month with a new doctor. I have read volumes of> information on the internet and most of the info I read just scares me.> They make it sound like a death sentence. Again I am so happy to find> this group!!> >>

[Guest guest]

Geeta... well tap my fingers! I did not think to add you have traveled to the US. I so admired that trip and then forget to even mention it!

You're a sweetheart.

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Re: new to the group> > > > > Thank you MamaSher for your comments.......I too scared my husband to death when I first started reading the internet on IPF.....I immediately bust out in tears and had him in tears too!! I am just overwhelmed with the amount of people on this site that have had this for years.......that is so encouraging!!!> Patti, 59, Indianapolis, IPF 2007>

[Guest guest]

I live in NE Ohio. I spend limited amounts of time in the cold since I have Raynauds and IPF. The cold makes it harder to breathe. I try to avoid obviously sick people. I have grandchildren and I have told them for years to stay away when sick. Little kids with sickness seem to be more lethal than adults.I only take something for cough when I have to, since I already take a ton of medications. The cough med seems to help sometimes. It gives me a break anyway.I love tea! All kinds. Everyday. To me it's soothing my sore throat.I try to exercise everyday. Since I have a cold I don't seem to move as fast. So I just slow down and do what I can do.PJ in OH, 54, IPF, Sjogrens 95 Re: Re: new to the group

Being new to this IPF diagnosis I am wondering how many of you handle certain conditions:

---do you avoid the cold weather?

---do you avoid sick people (hard for me as I have 3 little grandsons and they always have something)?

---do you take cough medication every day to help with the cough and does it help?

---does exercise seem to help?

---anyone have any luck with herbs, tea or vitamins?

Patti, 59, Indianapolis, IPF 2007

[Guest guest]

I just got on..............I've had that hose for over a year. It's torn my ears off.tripped me and stalks me..........but it keeps me alive.

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Thu, December 3, 2009 9:20:03 PMSubject: Re: new to the group

In the middle of the night I can hear it whispering, "I'm alive, I'm alive Mmmwwwaaaaaaha ha ah ah ha" in an evil little voice......What I want to know is how do I manage to tie it in knots? I'll suddenly realize I'm dragging a large clump behind me and there are always one or two slip knots in there that I can't get out without taking the hose off my face! Now I know I'm not jumping rope with the damn thing so what gives?Dyane, 54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis, Lipodermatosclerosi s, Diabetes, and now a RA like autoimmune component, yadda yadda yadda."Life is not a journey to the grave with intentions of arriving is a pretty, well-preserved body, but rather to skid in broadside,

thoroughly used up, totally worn out, chocolate in one hand, Margaritas in the other, loudly proclaiming "Holy **** What a ride!"."

> >> >> > From: Beth mbmurtha@> > Subject: Re: new to the group> > To: Breathe-Support@> yahoogroups. com> > Date: Wednesday, December 2, 2009, 8:26 AM> >> >> > Â> >> >> >> >> >> >> > Patti,> > Welcome to Breathe Support!! It's lousy that you have reason to> look for a group like this but I hope that you find it as helpful> as I have over the last 3 and a half years.> > It sounds like you are doing all the right stuff.

I'm so happy to hear> you are going to the University of Chicago. They have a great reputation> and I'm certain you will learn a ton regarding your own situation and> how to approach the new realities.> > Take things one step at a time and please don't panic about what you> read on the internet. I was diagnosed 3 and a half years ago and I'm in> EXACTLY the same condition I was at that time. I've been stable for 3> and a half years. We have a member who is I think ten or twelve years> out from diagnosis and is stable. So the> moral of the story is, there is> no expiration date tatooed on your fanny!> > Please continue to read and ask whatever questions you have. We're> here to help!> >> > Â> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > Â> > Â>

>> >> >> >> >> >> > From: emma0850 napa73 (AT) comcast (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tue, December 1, 2009 10:35:47 PM> > Subject: new to the group> >> > Â> >> > Hello everyone.... .I just found this group today and I couldn't be> happier to find all of you! My name is Patti.....I am 59 yrs old and was> told three years ago that I had pulmonary fibrosis in my lung bases. I> went through the entire ordeal of test after test and was told it was so> mild that they thought it may have been there for years. I continued to> do all the follow up> tests each year and until now it had remained> unchanged. This past month the tests showed it has now progressed to the> entire lung area. My PFT had dropped from 79 to 60 in two years.

I still> feel just fine but the doctor says it is time for Prednisone. I have an> appt in Chicago this month with a new doctor. I have read volumes of> information on the internet and most of the info I read just scares me.> They make it sound like a death sentence. Again I am so happy to find> this group!!> >>

[Guest guest]

I agree but I am going to try a shorter hose.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: Re: Re: new to the groupTo: Breathe-Support Date: Friday, December 4, 2009, 12:13 PM

I just got on.......... ....I've had that hose for over a year. It's torn my ears off.tripped me and stalks me.......... but it keeps me alive.

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT>

From: DyaneB <dyanebillings@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, December 3, 2009 9:20:03 PMSubject: Re: new to the group

In the middle of the night I can hear it whispering, "I'm alive, I'm alive Mmmwwwaaaaaaha ha ah ah ha" in an evil little voice......What I want to know is how do I manage to tie it in knots? I'll suddenly realize I'm dragging a large clump behind me and there are always one or two slip knots in there that I can't get out without taking the hose off my face! Now I know I'm not jumping rope with the damn thing so what gives?Dyane, 54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis, Lipodermatosclerosi s, Diabetes, and now a RA like autoimmune component, yadda yadda yadda."Life is not a journey to the grave with intentions of arriving is a pretty, well-preserved body, but rather to skid in broadside,

thoroughly used up, totally worn out, chocolate in one hand, Margaritas in the other, loudly proclaiming "Holy **** What a ride!"."

> >> >> > From: Beth mbmurtha@> > Subject: Re: new to the group> > To: Breathe-Support@> yahoogroups. com> > Date: Wednesday, December 2, 2009, 8:26 AM> >> >> > Â> >> >> >> >> >> >> > Patti,> > Welcome to Breathe Support!! It's lousy that you have reason to> look for a group like this but I hope that you find it as helpful> as I have over the last 3 and a half years.> > It sounds like you are doing all the right stuff.

I'm so happy to hear> you are going to the University of Chicago. They have a great reputation> and I'm certain you will learn a ton regarding your own situation and> how to approach the new realities.> > Take things one step at a time and please don't panic about what you> read on the internet. I was diagnosed 3 and a half years ago and I'm in> EXACTLY the same condition I was at that time. I've been stable for 3> and a half years. We have a member who is I think ten or twelve years> out from diagnosis and is stable. So the> moral of the story is, there is> no expiration date tatooed on your fanny!> > Please continue to read and ask whatever questions you have. We're> here to help!> >> > Â> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > Â> > Â>

>> >> >> >> >> >> > From: emma0850 napa73 (AT) comcast (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tue, December 1, 2009 10:35:47 PM> > Subject: new to the group> >> > Â> >> > Hello everyone.... .I just found this group today and I couldn't be> happier to find all of you! My name is Patti.....I am 59 yrs old and was> told three years ago that I had pulmonary fibrosis in my lung bases. I> went through the entire ordeal of test after test and was told it was so> mild that they thought it may have been there for years. I continued to> do all the follow up> tests each year and until now it had remained> unchanged. This past month the tests showed it has now progressed to the> entire lung area. My PFT had dropped from 79 to 60 in two years.

I still> feel just fine but the doctor says it is time for Prednisone. I have an> appt in Chicago this month with a new doctor. I have read volumes of> information on the internet and most of the info I read just scares me.> They make it sound like a death sentence. Again I am so happy to find> this group!!> >>

[Guest guest]

I need to watch myself............or sell a lot of furniture.......I keep forgetting about the hose

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Fri, December 4, 2009 4:47:34 PMSubject: Re: Re: new to the group

I agree but I am going to try a shorter hose.Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho

From: Soulliere <johnsbatik (AT) yahoo (DOT) com>Subject: Re: Re: new to the groupTo: Breathe-Support@ yahoogroups. comDate: Friday, December 4, 2009, 12:13 PM

I just got on.......... ....I've had that hose for over a year. It's torn my ears off.tripped me and stalks me.......... but it keeps me alive.

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT>

From: DyaneB <dyanebillings@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, December 3, 2009 9:20:03 PMSubject: Re: new to the group

In the middle of the night I can hear it whispering, "I'm alive, I'm alive Mmmwwwaaaaaaha ha ah ah ha" in an evil little voice......What I want to know is how do I manage to tie it in knots? I'll suddenly realize I'm dragging a large clump behind me and there are always one or two slip knots in there that I can't get out without taking the hose off my face! Now I know I'm not jumping rope with the damn thing so what gives?Dyane, 54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis, Lipodermatosclerosi s, Diabetes, and now a RA like autoimmune component, yadda yadda yadda."Life is not a journey to the grave with intentions of arriving is a pretty, well-preserved body, but rather to skid in broadside,

thoroughly used up, totally worn out, chocolate in one hand, Margaritas in the other, loudly proclaiming "Holy **** What a ride!"."

> >> >> > From: Beth mbmurtha@> > Subject: Re: new to the group> > To: Breathe-Support@> yahoogroups. com> > Date: Wednesday, December 2, 2009, 8:26 AM> >> >> > Â> >> >> >> >> >> >> > Patti,> > Welcome to Breathe Support!! It's lousy that you have reason to> look for a group like this but I hope that you find it as helpful> as I have over the last 3 and a half years.> > It sounds like you are

doing all the right stuff. I'm so happy to hear> you are going to the University of Chicago. They have a great reputation> and I'm certain you will learn a ton regarding your own situation and> how to approach the new realities.> > Take things one step at a time and please don't panic about what you> read on the internet. I was diagnosed 3 and a half years ago and I'm in> EXACTLY the same condition I was at that time. I've been stable for 3> and a half years. We have a member who is I think ten or twelve years> out from diagnosis and is stable. So the> moral of the story is, there is> no expiration date tatooed on your fanny!> > Please continue to read and ask whatever questions you have. We're> here to help!> >> > Â> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >

Â> > Â> >> >> >> >> >> >> > From: emma0850 napa73 (AT) comcast (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tue, December 1, 2009 10:35:47 PM> > Subject: new to the group> >> > Â> >> > Hello everyone.... .I just found this group today and I couldn't be> happier to find all of you! My name is Patti.....I am 59 yrs old and was> told three years ago that I had pulmonary fibrosis in my lung bases. I> went through the entire ordeal of test after test and was told it was so> mild that they thought it may have been there for years. I continued to> do all the follow up> tests each year and until now it had remained> unchanged. This past month the tests showed it has now progressed to the> entire lung area. My PFT had

dropped from 79 to 60 in two years. I still> feel just fine but the doctor says it is time for Prednisone. I have an> appt in Chicago this month with a new doctor. I have read volumes of> information on the internet and most of the info I read just scares me.> They make it sound like a death sentence. Again I am so happy to find> this group!!> >>

[Guest guest]

,

I keep trying to figure out how I can string in on the ceiling like

those zippy sheet thingys at the hospital....If you had a track on the

ceiling you would just have the 5 feet or so hanging down and nobody

would trip and we could keep all our furniture (I have Spanish Metal

curlicues on my dining room set, the hose hangs on tight to those let me

tell you....

Dyane

> >> >

> >> >

> >> > From: Beth mbmurtha@

> >> > Subject: Re: new to the group

> >> > To: Breathe-Support@

> >> yahoogroups. com

> >> > Date: Wednesday, December 2, 2009, 8:26 AM

> >> >

> >> >

> >> > Â

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> > Patti,

> >> > Welcome to Breathe Support!! It's lousy that you have

reason to

> >> look for a group like this but I hope that you find it

as helpful

> >> as I have over the last 3 and a half years.

> >> > It sounds like you are doing all the right stuff. I'm so happy to

hear

> >> you are going to the University of Chicago. They have a great

reputation

> >> and I'm certain you will learn a ton regarding your own situation

and

> >> how to approach the new realities.

> >> > Take things one step at a time and please don't panic about what

you

> >> read on the internet. I was diagnosed 3 and a half years ago and

I'm in

> >> EXACTLY the same condition I was at that time. I've been stable for

3

> >> and a half years. We have a member who is I think ten or twelve

years

> >> out from diagnosis and is stable. So the

> >> moral of the story is, there is

> >> no expiration date tatooed on your fanny!

> >> > Please continue to read and ask whatever questions you have.

We're

> >> here to help!

> >> >

> >> > Â

> >> > Beth

> >> > Moderator

> >> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> >> > Â

> >> > Â

> >> >

> >> >

> >> >

> >> >

> >> >

> >> >

> >> > From: emma0850 napa73 (AT) comcast (DOT) net>

> >> > To: Breathe-Support@ yahoogroups. com

> >> > Sent: Tue, December 1, 2009 10:35:47 PM

> >> > Subject: new to the group

> >> >

> >> > Â

> >> >

> >> > Hello everyone.... .I just found this group today and I couldn't

be

> >> happier to find all of you! My name is Patti.....I am 59 yrs old

and was

> >> told three years ago that I had pulmonary fibrosis in my lung

bases. I

> >> went through the entire ordeal of test after test and was told it

was so

> >> mild that they thought it may have been there for years. I

continued to

> >> do all the follow up

> >> tests each year and until now it had remained

> >> unchanged. This past month the tests showed it has now progressed

to the

> >> entire lung area. My PFT had dropped from 79 to 60 in two years. I

still

> >> feel just fine but the doctor says it is time for Prednisone. I

have an

> >> appt in Chicago this month with a new doctor. I have read volumes

of

> >> information on the internet and most of the info I read just scares

me.

> >> They make it sound like a death sentence. Again I am so happy to

find

> >> this group!!

> >> >

> >>

> >

> >

>

[Guest guest]

john

do you mean you are using the same tube for over a year

i change tubes every two weeks, when i get the o2 delivered

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: new to the groupTo: Breathe-Support Date: Friday, December 4, 2009, 4:47 PM

I agree but I am going to try a shorter hose.Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho

From: Soulliere <johnsbatik (AT) yahoo (DOT) com>Subject: Re: Re: new to the groupTo: Breathe-Support@ yahoogroups. comDate: Friday, December 4, 2009, 12:13 PM

I just got on.......... ....I've had that hose for over a year. It's torn my ears off.tripped me and stalks me.......... but it keeps me alive.

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT>

From: DyaneB <dyanebillings@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, December 3, 2009 9:20:03 PMSubject: Re: new to the group

In the middle of the night I can hear it whispering, "I'm alive, I'm alive Mmmwwwaaaaaaha ha ah ah ha" in an evil little voice......What I want to know is how do I manage to tie it in knots? I'll suddenly realize I'm dragging a large clump behind me and there are always one or two slip knots in there that I can't get out without taking the hose off my face! Now I know I'm not jumping rope with the damn thing so what gives?Dyane, 54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis, Lipodermatosclerosi s, Diabetes, and now a RA like autoimmune component, yadda yadda yadda."Life is not a journey to the grave with intentions of arriving is a pretty, well-preserved body, but rather to skid in broadside,

thoroughly used up, totally worn out, chocolate in one hand, Margaritas in the other, loudly proclaiming "Holy **** What a ride!"."

> >> >> > From: Beth mbmurtha@> > Subject: Re: new to the group> > To: Breathe-Support@> yahoogroups. com> > Date: Wednesday, December 2, 2009, 8:26 AM> >> >> > Â> >> >> >> >> >> >> > Patti,> > Welcome to Breathe Support!! It's lousy that you have reason to> look for a group like this but I hope that you find it as helpful> as I have over the last 3 and a half years.> > It sounds like you are

doing all the right stuff. I'm so happy to hear> you are going to the University of Chicago. They have a great reputation> and I'm certain you will learn a ton regarding your own situation and> how to approach the new realities.> > Take things one step at a time and please don't panic about what you> read on the internet. I was diagnosed 3 and a half years ago and I'm in> EXACTLY the same condition I was at that time. I've been stable for 3> and a half years. We have a member who is I think ten or twelve years> out from diagnosis and is stable. So the> moral of the story is, there is> no expiration date tatooed on your fanny!> > Please continue to read and ask whatever questions you have. We're> here to help!> >> > Â> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >

Â> > Â> >> >> >> >> >> >> > From: emma0850 napa73 (AT) comcast (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tue, December 1, 2009 10:35:47 PM> > Subject: new to the group> >> > Â> >> > Hello everyone.... .I just found this group today and I couldn't be> happier to find all of you! My name is Patti.....I am 59 yrs old and was> told three years ago that I had pulmonary fibrosis in my lung bases. I> went through the entire ordeal of test after test and was told it was so> mild that they thought it may have been there for years. I continued to> do all the follow up> tests each year and until now it had remained> unchanged. This past month the tests showed it has now progressed to the> entire lung area. My PFT had

dropped from 79 to 60 in two years. I still> feel just fine but the doctor says it is time for Prednisone. I have an> appt in Chicago this month with a new doctor. I have read volumes of> information on the internet and most of the info I read just scares me.> They make it sound like a death sentence. Again I am so happy to find> this group!!> >>

[Guest guest]

I forget it too. I have been living with it for 11 months.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia Idaho

From: Soulliere <johnsbatik (AT) yahoo (DOT) com>Subject: Re: Re: new to the groupTo: Breathe-Support@ yahoogroups. comDate: Friday, December 4, 2009, 12:13 PM

I just got on.......... ....I've had that hose for over a year. It's torn my ears off.tripped me and stalks me.......... but it keeps me alive.

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT>

From: DyaneB <dyanebillings@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, December 3, 2009 9:20:03 PMSubject: Re: new to the group

In the middle of the night I can hear it whispering, "I'm alive, I'm alive Mmmwwwaaaaaaha ha ah ah ha" in an evil little voice......What I want to know is how do I manage to tie it in knots? I'll suddenly realize I'm dragging a large clump behind me and there are always one or two slip knots in there that I can't get out without taking the hose off my face! Now I know I'm not jumping rope with the damn thing so what gives?Dyane, 54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis, Lipodermatosclerosi s, Diabetes, and now a RA like autoimmune component, yadda yadda yadda."Life is not a journey to the grave with intentions of arriving is a pretty, well-preserved body, but rather to skid in broadside,

thoroughly used up, totally worn out, chocolate in one hand, Margaritas in the other, loudly proclaiming "Holy **** What a ride!"."

> >> >> > From: Beth mbmurtha@> > Subject: Re: new to the group> > To: Breathe-Support@> yahoogroups. com> > Date: Wednesday, December 2, 2009, 8:26 AM> >> >> > Â> >> >> >> >> >> >> > Patti,> > Welcome to Breathe Support!! It's lousy that you have reason to> look for a group like this but I hope that you find it as helpful> as I have over the last 3 and a half years.> > It sounds like you are

doing all the right stuff. I'm so happy to hear> you are going to the University of Chicago. They have a great reputation> and I'm certain you will learn a ton regarding your own situation and> how to approach the new realities.> > Take things one step at a time and please don't panic about what you> read on the internet. I was diagnosed 3 and a half years ago and I'm in> EXACTLY the same condition I was at that time. I've been stable for 3> and a half years. We have a member who is I think ten or twelve years> out from diagnosis and is stable. So the> moral of the story is, there is> no expiration date tatooed on your fanny!> > Please continue to read and ask whatever questions you have. We're> here to help!> >> > Â> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >

Â> > Â> >> >> >> >> >> >> > From: emma0850 napa73 (AT) comcast (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tue, December 1, 2009 10:35:47 PM> > Subject: new to the group> >> > Â> >> > Hello everyone.... .I just found this group today and I couldn't be> happier to find all of you! My name is Patti.....I am 59 yrs old and was> told three years ago that I had pulmonary fibrosis in my lung bases. I> went through the entire ordeal of test after test and was told it was so> mild that they thought it may have been there for years. I continued to> do all the follow up> tests each year and until now it had remained> unchanged. This past month the tests showed it has now progressed to the> entire lung area. My PFT had

dropped from 79 to 60 in two years. I still> feel just fine but the doctor says it is time for Prednisone. I have an> appt in Chicago this month with a new doctor. I have read volumes of> information on the internet and most of the info I read just scares me.> They make it sound like a death sentence. Again I am so happy to find> this group!!> >>

[Guest guest]

No joyce.............I have tons of tubes.............change ti thing up my nose often...............I have lots of the long hose, but nobody ever said to change it.....guess it could cause problems...........They see me and think I should know these things.........I reily too much on medical people....I'm right brained and trusting,.

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Fri, December 4, 2009 6:25:28 PMSubject: Re: Re: new to the group

john

do you mean you are using the same tube for over a year

i change tubes every two weeks, when i get the o2 delivered

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Soulliere <johnsbatik (AT) yahoo (DOT) com>Subject: Re: Re: new to the groupTo: Breathe-Support@ yahoogroups. comDate: Friday, December 4, 2009, 12:13 PM

I just got on.......... ....I've had that hose for over a year. It's torn my ears off.tripped me and stalks me.......... but it keeps me alive.

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT>

From: DyaneB <dyanebillings@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, December 3, 2009 9:20:03 PMSubject: Re: new to the group

In the middle of the night I can hear it whispering, "I'm alive, I'm alive Mmmwwwaaaaaaha ha ah ah ha" in an evil little voice......What I want to know is how do I manage to tie it in knots? I'll suddenly realize I'm dragging a large clump behind me and there are always one or two slip knots in there that I can't get out without taking the hose off my face! Now I know I'm not jumping rope with the damn thing so what gives?Dyane, 54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis, Lipodermatosclerosi s, Diabetes, and now a RA like autoimmune component, yadda yadda yadda."Life is not a journey to the grave with intentions of arriving is a pretty, well-preserved body, but rather to skid in broadside,

thoroughly used up, totally worn out, chocolate in one hand, Margaritas in the other, loudly proclaiming "Holy **** What a ride!"."

> >> >> > From: Beth mbmurtha@> > Subject: Re: new to the group> > To: Breathe-Support@> yahoogroups. com> > Date: Wednesday, December 2, 2009, 8:26 AM> >> >> > Â> >> >> >> >> >> >> > Patti,> > Welcome to Breathe Support!! It's lousy that you have reason to> look for a group like this but I hope that you find it as helpful> as I have over the last 3 and a half years.> > It sounds like you are

doing all the right stuff. I'm so happy to hear> you are going to the University of Chicago. They have a great reputation> and I'm certain you will learn a ton regarding your own situation and> how to approach the new realities.> > Take things one step at a time and please don't panic about what you> read on the internet. I was diagnosed 3 and a half years ago and I'm in> EXACTLY the same condition I was at that time. I've been stable for 3> and a half years. We have a member who is I think ten or twelve years> out from diagnosis and is stable. So the> moral of the story is, there is> no expiration date tatooed on your fanny!> > Please continue to read and ask whatever questions you have. We're> here to help!> >> > Â> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >

Â> > Â> >> >> >> >> >> >> > From: emma0850 napa73 (AT) comcast (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tue, December 1, 2009 10:35:47 PM> > Subject: new to the group> >> > Â> >> > Hello everyone.... .I just found this group today and I couldn't be> happier to find all of you! My name is Patti.....I am 59 yrs old and was> told three years ago that I had pulmonary fibrosis in my lung bases. I> went through the entire ordeal of test after test and was told it was so> mild that they thought it may have been there for years. I continued to> do all the follow up> tests each year and until now it had remained> unchanged. This past month the tests showed it has now progressed to the> entire lung area. My PFT had

dropped from 79 to 60 in two years. I still> feel just fine but the doctor says it is time for Prednisone. I have an> appt in Chicago this month with a new doctor. I have read volumes of> information on the internet and most of the info I read just scares me.> They make it sound like a death sentence. Again I am so happy to find> this group!!> >>

[Guest guest]

john

several months ago, maybe last year, we had a discussion on line about changing the canulas and the tubing and keeping them clean

remember, the o2 goes from them into your lungs

i happen to use tubing that has the cannula attached, so every 2 weeks, i change it

i change both the concentrator and the marathon at the same time

it seems like a shame to waste all of the plastic, but maybe the plastic is a breeding ground for some bacteria or virus

new topic:

a couple of months ago, i spoke with a few people who didn't know that they can wear the oxygen into the shower

yes you do need to wear the o2 in the shower, because of the exertion that takes place

yes the tubing can get wet

i can remember Joyce Dalton talking about how her o2 SAT dropped in the shower even with the o2 turned up, and the shower chair, etc

i vaguely remember some discussion, before i was using o2, about how people get it to reach into the shower

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: new to the groupTo: Breathe-Support Date: Friday, December 4, 2009, 8:07 PM

No joyce....... ......I have tons of tubes....... ......change ti thing up my nose often....... ........I have lots of the long hose, but nobody ever said to change it.....guess it could cause problems.... .......They see me and think I should know these things...... ...I reily too much on medical people....I' m right brained and trusting,.

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT>

From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Fri, December 4, 2009 6:25:28 PMSubject: Re: Re: new to the group

john

do you mean you are using the same tube for over a year

i change tubes every two weeks, when i get the o2 delivered

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Soulliere <johnsbatik (AT) yahoo (DOT) com>Subject: Re: Re: new to the groupTo: Breathe-Support@ yahoogroups. comDate: Friday, December 4, 2009, 12:13 PM

I just got on.......... ....I've had that hose for over a year. It's torn my ears off.tripped me and stalks me.......... but it keeps me alive.

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT>

From: DyaneB <dyanebillings@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thu, December 3, 2009 9:20:03 PMSubject: Re: new to the group

In the middle of the night I can hear it whispering, "I'm alive, I'm alive Mmmwwwaaaaaaha ha ah ah ha" in an evil little voice......What I want to know is how do I manage to tie it in knots? I'll suddenly realize I'm dragging a large clump behind me and there are always one or two slip knots in there that I can't get out without taking the hose off my face! Now I know I'm not jumping rope with the damn thing so what gives?Dyane, 54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis, Lipodermatosclerosi s, Diabetes, and now a RA like autoimmune component, yadda yadda yadda."Life is not a journey to the grave with intentions of arriving is a pretty, well-preserved body, but rather to skid in broadside,

thoroughly used up, totally worn out, chocolate in one hand, Margaritas in the other, loudly proclaiming "Holy **** What a ride!"."

> >> >> > From: Beth mbmurtha@> > Subject: Re: new to the group> > To: Breathe-Support@> yahoogroups. com> > Date: Wednesday, December 2, 2009, 8:26 AM> >> >> > Â> >> >> >> >> >> >> > Patti,> > Welcome to Breathe Support!! It's lousy that you have reason to> look for a group like this but I hope that you find it as helpful> as I have over the last 3 and a half years.> > It sounds like you are

doing all the right stuff. I'm so happy to hear> you are going to the University of Chicago. They have a great reputation> and I'm certain you will learn a ton regarding your own situation and> how to approach the new realities.> > Take things one step at a time and please don't panic about what you> read on the internet. I was diagnosed 3 and a half years ago and I'm in> EXACTLY the same condition I was at that time. I've been stable for 3> and a half years. We have a member who is I think ten or twelve years> out from diagnosis and is stable. So the> moral of the story is, there is> no expiration date tatooed on your fanny!> > Please continue to read and ask whatever questions you have. We're> here to help!> >> > Â> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >

Â> > Â> >> >> >> >> >> >> > From: emma0850 napa73 (AT) comcast (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tue, December 1, 2009 10:35:47 PM> > Subject: new to the group> >> > Â> >> > Hello everyone.... .I just found this group today and I couldn't be> happier to find all of you! My name is Patti.....I am 59 yrs old and was> told three years ago that I had pulmonary fibrosis in my lung bases. I> went through the entire ordeal of test after test and was told it was so> mild that they thought it may have been there for years. I continued to> do all the follow up> tests each year and until now it had remained> unchanged. This past month the tests showed it has now progressed to the> entire lung area. My PFT had

dropped from 79 to 60 in two years. I still> feel just fine but the doctor says it is time for Prednisone. I have an> appt in Chicago this month with a new doctor. I have read volumes of> information on the internet and most of the info I read just scares me.> They make it sound like a death sentence. Again I am so happy to find> this group!!> >>

[Guest guest]

To use the oxygen in the shower, take the oxygen off and toss the cannula tubing over the shower door or shower curtin pole. Put the oxygen back on and step into the shower.

The best thing to lessen the oxygen knotting up is ask for a SWIVEL connector that connects the tubing to the cannula. That helps somewhat, but better yet if you can also get a swivel connection that connects the tubing to the concentrator. I believe it is called either a male connector, or a female connector. I am sure someone on here knows the proper name. It is about 3 inches long and connects a swivel end to the tubbing and has a tubbing type connector on the other end to connect to the concentrator. Some oxygen suppliers don't seem to know about this. I had a site that showed a picture of it, but I can't find it. Someone on here probably can find it. Marcia

[Guest guest]

Thanks Marcia I bet that will help with the evil knots!

Dyane

>

> To use the oxygen in the shower, take the oxygen off and toss the

cannula tubing over the shower door or shower curtin pole. Put the

oxygen back on and step into the shower.

>

> The best thing to lessen the oxygen knotting up is ask for a SWIVEL

connector that connects the tubing to the cannula. That helps somewhat,

but better yet if you can also get a swivel connection that connects the

tubing to the concentrator. I believe it is called either a male

connector, or a female connector. I am sure someone on here knows the

proper name. It is about 3 inches long and connects a swivel end to the

tubbing and has a tubbing type connector on the other end to connect to

the concentrator. Some oxygen suppliers don't seem to know about this.

I had a site that showed a picture of it, but I can't find it. Someone

on here probably can find it. Marcia

>

[Guest guest]

Hi Patti!

The cold weather is very uncomfortable for me to breath, but I can't really avoid it. The temp here this morning was 28 degrees and probably won't warm up much today. This cold blast is supposed to last for several days. But I still like to get out and walk my dog, so I'll bundle up this afternoon and brave the cold at least the sun is shining.

I haven't experienced any sick people yet that I've had to avoid. I did get my Seasonal and H1N1 flu shots..

I do take Guiafensen-Codeine cough syrup as needed, it definitely helps.

I suppose exercise helps us, but when I get back from my walks, I'm pooped. I will be starting a pulmo rehab class soon.

I take a multivitamin, extra calcium and a banana daily to keep foot cramps to a minimum. C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Wed, December 2, 2009 10:48:56 AMSubject: Re: Re: new to the group

Being new to this IPF diagnosis I am wondering how many of you handle certain conditions:

---do you avoid the cold weather?

---do you avoid sick people (hard for me as I have 3 little grandsons and they always have something)?

---do you take cough medication every day to help with the cough and does it help?

---does exercise seem to help?

---anyone have any luck with herbs, tea or vitamins?

Patti, 59, Indianapolis, IPF 2007

[Guest guest]

Hi Patti!

I don't think I said welcome to the group! Sorry you have been stricken with this dreadful disease. But thank goodness we're not alone in this! I'm sure you will find as I do the comfort, encouragement, knowledge, and humor from the wonderful people in this support group.

I'm on 15mg of prednisone along with N-AC and Azathioprine. All of which seemed to improve my PFTs the first three months, but recently I think my breathing has gotten worse, I've had to turn up the O2. I go back for another test on the 21st of this month, so we'll see.

My diagnosis is IPF which has basically no treatment other than a lung transplant when it gets to that stage.

It is a frightening disease when you read the stats, but like everyone here will tell you, we don't have an expiration date stamped on us. Though I try not to dwell on the 3-5 year sentence, I do see my time as precious and believe in living out my life doing what's really important to me now. It took time for me to come to terms with the plans I had before diagnosis as they now no longer exist. But I have set new goals and dreams and now look forward to those.

C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Tue, December 1, 2009 7:35:47 PMSubject: new to the group

Hello everyone..... .I just found this group today and I couldn't be happier to find all of you! My name is Patti.....I am 59 yrs old and was told three years ago that I had pulmonary fibrosis in my lung bases. I went through the entire ordeal of test after test and was told it was so mild that they thought it may have been there for years. I continued to do all the follow up tests each year and until now it had remained unchanged. This past month the tests showed it has now progressed to the entire lung area. My PFT had dropped from 79 to 60 in two years. I still feel just fine but the doctor says it is time for Prednisone. I have an appt in Chicago this month with a new doctor. I have read volumes of information on the internet and most of the info I read just scares me. They make it sound like a death sentence. Again I am so happy to find this group!!

[Guest guest]

.....thank you so much for your gracious welcome to the group.....I agree the encouragement in this group is beyond belief. At this point I am not on O2 or any meds but because my stats appear to be changing I leave Tues morning for University of Chicago for another complete set of tests.......then I meet with the doctor on the 16th. I shall keep everyone posted.

Patti, 59, Indianapolis, IPF 2007

[Guest guest]

I got one of those swivels when I went to my daughters house. I didn't know what it was for. Thanks for telling me. I got it from Lincare.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: Re: new to the groupTo: Breathe-Support Date: Saturday, December 5, 2009, 10:36 AM

To use the oxygen in the shower, take the oxygen off and toss the cannula tubing over the shower door or shower curtin pole. Put the oxygen back on and step into the shower.

The best thing to lessen the oxygen knotting up is ask for a SWIVEL connector that connects the tubing to the cannula. That helps somewhat, but better yet if you can also get a swivel connection that connects the tubing to the concentrator. I believe it is called either a male connector, or a female connector. I am sure someone on here knows the proper name. It is about 3 inches long and connects a swivel end to the tubbing and has a tubbing type connector on the other end to connect to the concentrator. Some oxygen suppliers don't seem to know about this. I had a site that showed a picture of it, but I can't find it. Someone on here probably can find it. Marcia

[Guest guest]

Hi, All

Sometimes complain that my dog has a bigger longer than mine…… I would love to make a picture someday my oxygen hose and vacuum electrical hose knotted up together and the dog having a ball playing around my tangle of cords.

So thank you for the suggestions about the male and female cord since sometimes I a web of cords. here is a pdf file with the female swivel I saw them at Amazon.com also.

I also was thinking for anyone who is good at little mechanical projects… Do you know the retractable electrical vacuum cleaner cords? Would it not be wonderful if they had something like this with oxygen cords… Or something like this with oxygen tubing

Talk to you later, Erna ---it is a beutifual day and needs to be enjoyed.....

Erna

1992 bird fanciers syndrome

CAD & MI 2004

ILD 2008 NSIP 2009

Washington State

From: Chatty_katt3@ yahoo.com <chatty_katt3@ yahoo.com>Subject: Re: new to the groupTo: Breathe-Support@ yahoogroups. comDate: Saturday, December 5, 2009, 10:36 AM

To use the oxygen in the shower, take the oxygen off and toss the cannula tubing over the shower door or shower curtin pole. Put the oxygen back on and step into the shower.

The best thing to lessen the oxygen knotting up is ask for a SWIVEL connector that connects the tubing to the cannula. That helps somewhat, but better yet if you can also get a swivel connection that connects the tubing to the concentrator. I believe it is called either a male connector, or a female connector. I am sure someone on here knows the proper name. It is about 3 inches long and connects a swivel end to the tubbing and has a tubbing type connector on the other end to connect to the concentrator. Some oxygen suppliers don't seem to know about this. I had a site that showed a picture of it, but I can't find it. Someone on here probably can find it. Marcia

[Guest guest]

I like your idea Erna.........hmmmmmmmm interesting

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Sun, December 6, 2009 4:18:09 PMSubject: Re: Re: new to the group

Hi, All Sometimes complain that my dog has a bigger longer than mine…… I would love to make a picture someday my oxygen hose and vacuum electrical hose knotted up together and the dog having a ball playing around my tangle of cords. So thank you for the suggestions about the male and female cord since sometimes I a web of cords. here is a pdf file with the female swivel I saw them at Amazon.com also. I also was thinking for anyone who is good at little mechanical projects… Do you know the retractable electrical vacuum cleaner cords? Would it not be wonderful if they had something like this with oxygen cords… Or something like this with oxygen tubing Talk to you later, Erna ---it is a beutifual day and needs to be enjoyed.....

Erna

1992 bird fanciers syndrome CAD & MI 2004

ILD 2008 NSIP 2009 Washington State

From: Chatty_katt3@ yahoo.com <chatty_katt3@ yahoo.com>Subject: Re: new to the groupTo: Breathe-Support@ yahoogroups. comDate: Saturday, December 5, 2009, 10:36 AM

To use the oxygen in the shower, take the oxygen off and toss the cannula tubing over the shower door or shower curtin pole. Put the oxygen back on and step into the shower.

The best thing to lessen the oxygen knotting up is ask for a SWIVEL connector that connects the tubing to the cannula. That helps somewhat, but better yet if you can also get a swivel connection that connects the tubing to the concentrator. I believe it is called either a male connector, or a female connector. I am sure someone on here knows the proper name. It is about 3 inches long and connects a swivel end to the tubbing and has a tubbing type connector on the other end to connect to the concentrator. Some oxygen suppliers don't seem to know about this. I had a site that showed a picture of it, but I can't find it. Someone on here probably can find it.

Marcia

[Guest guest]

Welcome, Maggie! It's the best thing possible that you found this group and the precious people involved. You will find friendship and people who understand every detail of what you are going through. I'm so sorry you've had it so rough! One of our members, a lady named Gwynne, had a transplant in San . Please do a search in the database for her story. Again, glad to have you among caring, knowledgable folks!Elisa Sjogrens, Raynaud's, NSIP April ' 08Age 52 Mansfield, TXSent from my iPhone

Hi all,

I have been lurking now for a few weeks and reading the posts which are very informative, so it's time to get involved.

My name is Maggie , I am 64 y/o and live close to San , TX.

I have been diagnosed with ILD, IPF in early 2007. I actually had been doing OK (I thought) until I got sick this Oct & took a sudden turn for the worse. I am now on oxygen 24/7, NAC, prednisone & using a C-PAP with oxygen & got the dreaded prognosis of 2-5 yrs.

My pulmonologist referred me to UTHSC in San for a biopsy 10/08, but because of no insurance & I was stable with no significant problems, we decided to hold off for awhile. This past summer I started experiencing shortness of breath (SOB) especially with exertion & I contributed it to the horrendous heat we had. In October, I was exposed & caught a virus & I was really sick. My SATS were in the 60s & 70s I was treated with antibiotics & prednisone upped to 20mg & oxygen. My x-rays & CTs showed marked progression of this disease and I was referred back to the San docs to again schedule the biopsy.

Well I never got to see the surgeon, Dr. , he sent in Dr. L. Angel who is one of the dept heads and on the lung transplant team to talk to me. They decided not to do the biopsy since the scans gave a great picture of the IPF, was told I would eventually need a lung transplant-maybe!!! but my age & wt is against it; oxygen 24/7; wt loss; possible cellsept, pulmo rehab, and the dreaded 2-5 yr expiration date, and I had to quit my job because of the exposure to illnesses that would compromise my lungs further. He knows my pulmodoc well & sent his recommendations.

My response was you can't get rid of me that fast, I have too much to do in life. My first thought was: "I moved to Tx 3 yrs ago and already got a death sentence". I have already lost 11 lbs toward my goal, I got over the bug and feel much better. I applied for SSD & was approved in 6 days, but that won't start for a few months. I really didn't know about NSIP/UIP until I read about this from the group & I am researching everything. My hubby Brad is wonderful & is a great support to me.

I have a few questions for the group. Has anyone been to the San Health Science Center & what is your opinion? I'm not unhappy with them, but I don't hear to much about them. Does Houston have a good program/transplant team? Is anyone in any of the clinical trials that I read about? I have lots of family in Colorado & have consider going to NJH for further F/U and other opinions.

That's it in a nutshell & thank you for all the info that is provided.

I intend to be an active member & contribute to the group also.

Maggie

[Guest guest]

Maggie

It sounds like you did get good advice and consultation there. Now, as

to your questions regarding UTSA. We have a forum member here who was

very successfully transplanted there. She was quite impressed. The major

transplant program in Houston is at Methodist. Their program had some

issues and would not have ranked as high as UTSA. However, it appears

they may have worked through them and they are doing a lot of

transplants.

As to National Jewish. I respect it as much as any center in the

country. I would always want a second opinion on a disease like this and

I'd want it from the best I could find. So, personally, with family in

Colorado, I'd make the trip for a thorough look. This isn't being

critical of the care you've gotten in San but something I would

say regardless of where you'd been.

Now, as to non-transplant treatment in San , we've had some

members pleased and some members or former members whose treatment

didn't make me comfortable at all. You'll have to decide for yourself

how you feel. But the second opinion might help you with that as well.

>

> Hi all,

> I have been lurking now for a few weeks and reading the posts which

are very informative, so it's time to get involved.

>

> My name is Maggie , I am 64 y/o and live close to San ,

TX.

>

> I have been diagnosed with ILD, IPF in early 2007. I actually had

been doing OK (I thought) until I got sick this Oct & took a sudden turn

for the worse. I am now on oxygen 24/7, NAC, prednisone & using a C-PAP

with oxygen & got the dreaded prognosis of 2-5 yrs.

>

> My pulmonologist referred me to UTHSC in San for a biopsy

10/08, but because of no insurance & I was stable with no significant

problems, we decided to hold off for awhile. This past summer I

started experiencing shortness of breath (SOB) especially with exertion

& I contributed it to the horrendous heat we had. In October, I was

exposed & caught a virus & I was really sick. My SATS were in the 60s &

70s I was treated with antibiotics & prednisone upped to 20mg &

oxygen. My x-rays & CTs showed marked progression of this disease and

I was referred back to the San docs to again schedule the

biopsy.

>

> Well I never got to see the surgeon, Dr. , he sent in Dr.

L. Angel who is one of the dept heads and on the lung transplant team

to talk to me. They decided not to do the biopsy since the scans gave a

great picture of the IPF, was told I would eventually need a lung

transplant-maybe!!! but my age & wt is against it; oxygen 24/7; wt

loss; possible cellsept, pulmo rehab, and the dreaded 2-5 yr expiration

date, and I had to quit my job because of the exposure to illnesses that

would compromise my lungs further. He knows my pulmodoc well & sent his

recommendations.

>

> My response was you can't get rid of me that fast, I have too much to

do in life. My first thought was: " I moved to Tx 3 yrs ago and already

got a death sentence " . I have already lost 11 lbs toward my goal, I

got over the bug and feel much better. I applied for SSD & was

approved in 6 days, but that won't start for a few months. I really

didn't know about NSIP/UIP until I read about this from the group & I am

researching everything. My hubby Brad is wonderful & is a great support

to me.

>

> I have a few questions for the group. Has anyone been to the San

Health Science Center & what is your opinion? I'm not unhappy

with them, but I don't hear to much about them. Does Houston have a

good program/transplant team? Is anyone in any of the clinical trials

that I read about? I have lots of family in Colorado & have consider

going to NJH for further F/U and other opinions.

>

> That's it in a nutshell & thank you for all the info that is provided.

> I intend to be an active member & contribute to the group also.

>

> Maggie

>