Re: new to the group

[Guest guest]

Hi Dawn welcome to the bunch. Everyone here are good people. hugs marg

[Guest guest]

wtg amy hugs marg

[Guest guest]

Dear Dawn (and other newbies!)

My whole story is online at OnHealth.com as " Amy's Story " . Here is a link:

http://onhealth.com/women/in-depth/item/item,91744_1_1.asp

I am very pleased with my results so far (54 lbs. lost since surgery May 22,

2000) and I feel great. Good luck to all of you!

~Amy.

[Guest guest]

> Hello all of you out there,

> Hi. My name is dawn and I have just joined the group about 1

> week ago. All of you sound so nice and supportive to each other. I

> was

> wondering if any of you post op people who like to share there

story

> with me. Partly due to the fact that I need contacts but mostly

> because my husband and I would like to know how life really is

after

> surgery. If you sent me your email I could ask you questions or you

> could just tell me your story. I am 23 and a mother of a great 2

year

> old daughter. I am over weight (as if you did not know) The main

> reason why I would like to get the surgery done is because I have a

> ruptured disk in my back and the weight really puts me in alot of

> pain. Anyway I would love to get to know all of you better. I am

just

> sending in my insurence letter so that is what point I am at. Hope

to

> hear from some of you soon.

> Dawn

> drashwand99@y...

Hi Dawn,

I had the MGB on 7/17/00 and I'm doing great. I can eat most things

and I've had no dumping or vomiting so far. If you have a list of

specific questions you would like to ask, e-mail me at slrc @

excite.com.

Suzanne in NC

mgb 7/17/00

254/221

[Guest guest]

I am new to the group also. I'm a 22 yr. old college senior, which I

will be graduating in May (hopefully), and would like to start my

life off with re-newed hope that I don't have to be fat the rest of

my life just because my jeans tell me so. Anyway, I was curious if

there are any of you post-ops out there that have had the surgery

before they had children, which would be my situation. I want to have

children in the future, and am very interested in how life was/is

like being pregnant and having had this surgery.

thanks:)

devonne

stddrp26@...

[Guest guest]

Welcome Dawn,

You are in the right place. I am a preop, so I have no story to tell you.

But I know you will get lots of responses and support from the post ops here.

Ruqayya

[Guest guest]

Tamar,

This is a great group for support and information. I know that I

can ask any question without fear of being criticized. And your right

about needing the support. Sometimes it is the only thing that gets me

through.

Lori Owen - Denton, Texas

SRVG 7/16/01

Dr. Ritter/Dr. Bryce

On Wed, 15 Oct 2003 15:05:46 -0000 " puppycat1818 "

writes:

> Hello Everyone,

>

> My name is Tamar and I had the rny on January 31, 2001. I am 5'1 "

> and weighed 245 pounds going in. I got down to 150 for a couple of

> months but over the summer gained back about 12 pounds. I am now

> working on losing it and getting myself back on track so I thought

> that it would make it easier if I had a great support group. Since I

>

> had such a positive experience with ossg support groups pre-op and

> directly post-op, I thought I would come and find a group of people

>

> who are where I'm at, and it looks like I've found you!

>

> I would love any input into how I can re-motivate. I read some back

>

> postings and I agree with the fake it til you make it and the just

> do it. But I have found that there is really nothing like a good

> support group.

>

> Looking forward to hearing from you!

>

> Tamar

>

>

>

> Homepage: http://groups.yahoo.com/group/Graduate-OSSG

>

> Unsubscribe: mailto:Graduate-OSSG-unsubscribe

>

>

>

>

>

[Guest guest]

WELCOME TO THE LIST. the FOLKS HERE ARE REALLY SUPPORTIVE. many ARE AWAY

FROM COMPUTERS AS THE HOLIDAYS ARE VERY BUSY & THE KIDS HOME FROM SCHOOL IN

MANY CASES.

You will see more activity soon. best to you & yours for a great new year.

LOVE & HUGS< GRANDMOMBEV

New to the group

Hello everyone,

I just joined the group- just found it- and I think I'll like it! My

daughter is 11 months old and has CF, and I have a son as well without

CF. I am so grateful we live in CO where newborn screening for CF is

mandatory- we can thank insurance companies for not having it in every

state. Anyhow, we found out when she was about a month old that she had

CF, and since then, she has been doing great. She's been on oral

antibiotics 4-5 times, but our Children's Hospital here is more

aggressive than some and put the kids on them whenever they have a

cough. She hasn't been in the hospital at all, and in fact is in the

50th percentile for weight, which I'm told is pretty good for a CF kid.

Anyhow, thanks to whomever created this group- support is the best

medicine with something like this.

Elias- dad to Uriah, 4, w/o CF and Soley, 11 mon, w/CF.

_____ ACG_____

Alumni Consulting Group

Elias Cobb

Senior Technical Recruiter

ecobb@...

[Guest guest]

Welcome, Elias! You have found one of the best places for CF support and

information. Great to have another dad around here too!

Mom of 5 with CF and one on the way

visit our family group to read our story at http://groups.msn.com/TeamJane

New to the group

Hello everyone,

I just joined the group- just found it- and I think I'll like it! My

daughter is 11 months old and has CF, and I have a son as well without

CF. I am so grateful we live in CO where newborn screening for CF is

mandatory- we can thank insurance companies for not having it in every

state. Anyhow, we found out when she was about a month old that she had

CF, and since then, she has been doing great. She's been on oral

antibiotics 4-5 times, but our Children's Hospital here is more

aggressive than some and put the kids on them whenever they have a

cough. She hasn't been in the hospital at all, and in fact is in the

50th percentile for weight, which I'm told is pretty good for a CF kid.

Anyhow, thanks to whomever created this group- support is the best

medicine with something like this.

Elias- dad to Uriah, 4, w/o CF and Soley, 11 mon, w/CF.

_____ ACG_____

Alumni Consulting Group

Elias Cobb

Senior Technical Recruiter

ecobb@...

[Guest guest]

Welcome, I'm glad to have another person's viewpoint.

Patty, mom toTyler,8,wcf and 2 lil ones wocf in the Sunshine State

> Hello everyone,

>

> I just joined the group- just found it- and I think I'll like it!

My

> daughter is 11 months old and has CF, and I have a son as well

without

> CF. I am so grateful we live in CO where newborn screening for CF

is

> mandatory- we can thank insurance companies for not having it in

every

> state. Anyhow, we found out when she was about a month old that

she had

> CF, and since then, she has been doing great. She's been on oral

> antibiotics 4-5 times, but our Children's Hospital here is more

> aggressive than some and put the kids on them whenever they have a

> cough. She hasn't been in the hospital at all, and in fact is in

the

> 50th percentile for weight, which I'm told is pretty good for a CF

kid.

>

> Anyhow, thanks to whomever created this group- support is the best

> medicine with something like this.

>

> Elias- dad to Uriah, 4, w/o CF and Soley, 11 mon, w/CF.

>

> _____ ACG_____

> Alumni Consulting Group

>

> Elias Cobb

> Senior Technical Recruiter

>

> ecobb@a...

>

>

>

>

>

[Guest guest]

Elias,

Welcome to our wonderful group. I have two girls. A 26year old no CF and

who is 18 years old w/cf. was diagnosed at age 5. She

has been fairly healthy with the mild colds and such. This past summer was

the first time that she has been in the hospital for a tune-up. Her main

problem then was her asthma. Hope you enjoy our group.

Tina W.

New to the group

Hello everyone,

I just joined the group- just found it- and I think I'll like it! My

daughter is 11 months old and has CF, and I have a son as well without

CF. I am so grateful we live in CO where newborn screening for CF is

mandatory- we can thank insurance companies for not having it in every

state. Anyhow, we found out when she was about a month old that she had

CF, and since then, she has been doing great. She's been on oral

antibiotics 4-5 times, but our Children's Hospital here is more

aggressive than some and put the kids on them whenever they have a

cough. She hasn't been in the hospital at all, and in fact is in the

50th percentile for weight, which I'm told is pretty good for a CF kid.

Anyhow, thanks to whomever created this group- support is the best

medicine with something like this.

Elias- dad to Uriah, 4, w/o CF and Soley, 11 mon, w/CF.

_____ ACG_____

Alumni Consulting Group

Elias Cobb

Senior Technical Recruiter

ecobb@...

[Guest guest]

And had you been on line with us yesterday, you might have wondered whether

this was Comedy Central CF--this is the greatest place in cyberspace because

people like you join us. Welcome aboard and dive right in--the water is always

fine on this list, despite the Crazy Cruise toward a Cure! Love to you and to

yours,

n Rojas, wcf, mom of 3 ADULTS, the youngest of whom has cystic fibrosis

also--all still kicking!

New to the group

Hello everyone,

I just joined the group- just found it- and I think I'll like it! My

daughter is 11 months old and has CF, and I have a son as well without

CF. I am so grateful we live in CO where newborn screening for CF is

mandatory- we can thank insurance companies for not having it in every

state. Anyhow, we found out when she was about a month old that she had

CF, and since then, she has been doing great. She's been on oral

antibiotics 4-5 times, but our Children's Hospital here is more

aggressive than some and put the kids on them whenever they have a

cough. She hasn't been in the hospital at all, and in fact is in the

50th percentile for weight, which I'm told is pretty good for a CF kid.

Anyhow, thanks to whomever created this group- support is the best

medicine with something like this.

Elias- dad to Uriah, 4, w/o CF and Soley, 11 mon, w/CF.

_____ ACG_____

Alumni Consulting Group

Elias Cobb

Senior Technical Recruiter

ecobb@...

[Guest guest]

Hello!

Saw the reply from someone in Colorado. do you live in town or in rural area.

WE have been looking for other families that live the rural life and not much

luck. Found this board and really like it.

We live in CA on a ranch and sometimes doctors don't understand our way of life.

We were initially told that we should move closer to cf center as air quality in

our area would be bad due to pesticides. Yeah right, like the bay area is such

a joy to live in. We live the rural life and would not change our lifesytle for

anything. You just have to learn to adapt.

Best to all in new year.

[Guest guest]

Welcome Elias, Uriah, and Soley. You are right, this is a great site for new

parents. please feel free to jump in at anytime with questions or comments. I

am and I have a 19 year old daughter w/cf. she was diagnosed at 8

months after being sick for about 2 or 3 months.

She is doing very well now and is in college. I'm also married to for

almost 25 years and we have a 21 year old son Nick who is a senior in college

and he is also doing very well.

Welcome again,

love,

M

[Guest guest]

How do you do that sher....I need someone here to lead me thru it............puter stupid

<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: Wed, December 2, 2009 1:30:30 PMSubject: Re: Re: new to the group

Tammy....a reminder to add your name to the bottom of your mail so we are sure who it is from...most of us have a 'signature' set up with name, dx(s), date of dx (diagnosis), age (if you choose) and where you live... These little one liners really help remember a person.

I've been helped by our group as you have and chose to have (or not have) testing or whatever just by what I've learned here. I've never regretted my decisions.

I think too that the number one thing in importance is to gather all the information you can before making a decision.

Sounds like you are planning on a permanent move to the LA area.

I'm sure you'll keep in touch.

Happy Holidays to you.

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

Re: new to the group

I am sorry to hear that your test are getting worse. My name is Tammy and I am 35yo from Omaha Ne and I was also just diagnosed with UIP this past week. I have read lots on the internet and I agree it is terrifying. This support group has been a live saver for me so far. Everyone is very nice and they answer all your questions without prejudice. I feel blessed that I was lead to this group of what I now consider friends. I will pray that you find the same comfort in the words of our friends here. God Bless and keep in touch.

[Guest guest]

Emma... I too found this group the same day I was dx (diagnosed). That was soon to be 4 years ago now. I was so scared and I just knew I was going to die the next coming month.

I had no idea what 'IPF' meant so I went to the internet of course. When I found it I let out such a gasp that my husband came running, wanting to know what was wrong with me. I yelled at him, "My God, I'm going to die!" We learn here that we have no expiration date stamped on our butts...that's thanks to our Peggy.

Keep reading Emma, don't allow yourself to get overwhelmed. There is always someone here to answer a question or give support.

Be especially careful of Prednisone... some of us opt to take it and some, like me, opt not to. I WILL take it for short periods but long term brings the side effects that I do not want. Mainly wt. gain and it's hard to wean ourselves off the medication. You will get lots of answers on Prednisone; read the Files on the web page.

I'm sorry you have progressed, that's always scary.

I've recently had some progression myself. Through an echo and left and right heart cath, mild to moderate Pulmonary Hypertension is now found. I'm going to have to read up on this again.

You are in the best place you can be as we fight our common disease!

Welcome.

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

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]

,

The prognosis of IPF (keep in mind I'm only talking about IPF) takes a course that can’t necessarily be pre-determined. It could be progressively slow growing or could be slow for a time and then hit a rapid decline. Therefore, Stage 1 could be years and Stage 2 be a couple of months or vice-versa and the Stage 3 might be several months or several weeks....

We can get a diagnosis of mild, moderate, or severe stage from our pulmonary function tests. But sometimes those tests can show improvement temporarily by starting medication and then begin to decline or stablize.

It's just the nature of the beast.

I do what I have to do to manage my disease and health and the rest of the time I want to focus on what's really important. C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Wed, December 2, 2009 7:45:51 AMSubject: Re: new to the group

Beth, Bruce,

I remember when I was first diagnosed I wondered how far advanced I was. I noticed many others wonder the same so, they ask what stage there at? and we are told its not like cancer there are no stages etc, Maybe I am out in left field but It seems to me we should create "stages and it would help us all in how to live our lives and be prepared for the next stage. For instance stage 1. No O2 needed

stage, 2. No O2 needed at rest but 2-5 liters with activity or exercise,

stage, 3. O2 needed at rest and with activity ie. 24/7,

stage 4. High liter Oxygen needed at rest 4+ and activity somewhat restricted due to high amounts of O2 needs.

Then, as time goes on we could study progression from one stage to another, average time at stage one before moving to stage 2 etc. maybe we'd realize stage one and there are much longer etc. It could help us know a little better what to expect.

I realize we are all different and progress different based on many variances, type of ILD etc. but we still could look at averages and know a little more of what to expect. I know four example stages are not what we would want and need to be tweeked but, What do you think?

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: new to the groupTo: Breathe-Support@ yahoogroups. comDate: Wednesday, December 2, 2009, 8:26 AM

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!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: emma0850 <napa73 (AT) comcast (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Tue, December 1, 2009 10:35:47 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]

Bruce,

What you have written to makes so much sense. I had not given so much

thought to the details of what my future entails but you have made things so

clear .i feel more confident and less uncertain

Thanks

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 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]

Hello All,

I have a comment about stages. When I finished my exercise test at NJH, they

asked me, " On a scale of one to ten, how close were you to having no reserve

breath left? " I said nine point five!

It seems to me that one could apply that scale to the progress of any disease.

For instance, each point would represent a change for the worse. Nobody knows

how fast that change may come and the next point would be reached; but most

pulmos probably have some idea at which point any patient would be in the

progress of their disease. A one would be very early and 10 would be hospice.

I plan to ask my pulmo next time I speak with her to give me one of those points

to go by. I'll let you know what, if anything, happens.

ann

> >

> >

> > 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]

Sher,

Thats right , and dont forget to tell them that I have travelled all the way

from India to US.

Thanks friend

Geeta

>

> 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]

Geeta/Bruce,Yes Bruce as always you are to articulate. You seem to reach into my brain and put all the jumble into a coherent scheme. Did you say you were an engineer? Geeta, I really enjoyed your tales of your life and day. Different cultures have always enthralled me.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!"."> > >> > >> > > 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 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]

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,

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]

Patti

living in the northeast the cold weather can't be avoided

some people wear a mask when they go outside

Beth has a good resource for a cold weather mask from when she lived in New York

i did get a cold weather mask from some organization in Pittsburgh, it's just a thin piece of foam, shaped to cover your nose and mouth with cutouts for around the ears

it was advertised in the Pulmonary Paper last year

i dislike the hot humid summer more than the cold winter

avoiding sick people can be difficult unless you quarentine yourself

if I know that my grandson is sick, i usually try not to see him, because the contact with him is close

i do not take cough medicine at all, the only thing it did for me in the beginning was make me sleep

things that bring on my cough are drinking something cold, talking too much without using oxygen, changing position -- bending, lying down, getting up

when i don't exercise, i tend to get sluggish

there is a reason for exercise, i understand it, but difficult for me to explain

keeping your muscles in good condition means they need less oxygen, this enables your lungs to use the oxygen better

Beth can explain it better

the transplant team told me that a lot of the otc stuff interfers with the immunos after transplant, so i stopped taking the one herb that i had been on and make sure your docs know about the herbs, teas and vitamins that you are taking

i even stopped eating grapefruit, i forget why, but it interfers with something

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: Wednesday, December 2, 2009, 1:48 PM

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]

Thank you Pink Joyce for you comments......it is so helpful getting everyone's take on different conditions and what works for them.

Patti, 59, Indianapolis, IPF 2007

[Guest guest]

my transplant doc describe the progression in 3 ways using his arms, it's tough to duplicate on line but i will try

stable for a long time -- a flat line ..................................

gradual decline -- a sloping line ....

.......

.......

stable for a long time with a sudden drop ............................

..

..

..

..

..

at this time there is no way to predict the progression

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: Wednesday, December 2, 2009, 1:21 PM

Stages still wouldn't tell you because the diseases are sounpredictable. Plus we'd need different for all the different forms. Ithink just live the best you can and take nothing for granted at all.Because you could spend forever in whatever you'd call stage 2 or youcould go straight from stage 1 to the end. Biggest thing is avoidingcomplications so that you do make sure you go the complete path.Now, personally, I do sort of have my own mental concept and have usedit in planning my future.First, I think of how I've been since diagnosis. I was immediately onoxygen so no pre-oxygen period for me. Low to moderate oxygen and ableto be pretty functional. 0-5 lpm depending on what I'm doing.Next, I think of the period in which my oxygen needs are considerablyhigher and I'm requiring 6-10 lpm when active. At that point I picturemyself far less able to do certain things but still

able to do many withoxygen.Then, I think of the period of 10 lpm and more when I've lost mostmobility. I try to surround myself at home with my favorite things. Ibring in hospice at the right time as the oxygen requirements increaseand their effectiveness decrease.But I have no idea how long any stage or if I'll see them all. I've justthought ahead of how I want to be at the various levels of the diseaseI've seen many reach.There are studies underway trying to find the keys to predictingprogression but thats still research. Meanwhile we all need to live. Youwere an excellent example with your trip. I personally missed a lot ofstages by not being diagnosed when I should have been. My FVC was 44%and my DLCO was 38% the first time either was ever measured and I wasput on oxygen that same day.>>> 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 tolook for a group like this but I hope that you find it as helpfulas 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 hearyou are going to the University of Chicago. They have a great reputationand I'm certain you will learn a ton regarding your own situation andhow to approach the new realities.> Take things one step at a time and please don't panic about what youread on the internet. I was diagnosed 3 and a half years ago and I'm inEXACTLY the same condition I was at that time. I've been stable for 3and a half years. We have a member who is I think ten or twelve yearsout from diagnosis and is stable. So the

moral of the story is, there isno expiration date tatooed on your fanny!> Please continue to read and ask whatever questions you have. We'rehere 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 behappier to find all of you! My name is Patti.....I am 59 yrs old and wastold three years ago that I had pulmonary fibrosis in my lung bases. Iwent through the entire ordeal of test after test and was told it was somild that they thought it may have been there for years. I continued todo all the follow up

tests each year and until now it had remainedunchanged. This past month the tests showed it has now progressed to theentire lung area. My PFT had dropped from 79 to 60 in two years. I stillfeel just fine but the doctor says it is time for Prednisone. I have anappt in Chicago this month with a new doctor. I have read volumes ofinformation 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 findthis group!!>