New to the Group

[Guest guest]

Thanks!

Um my Dr. Here in Santa Fe didnt send me to a specialist untill now,

I didnt know about casting I thought he would have to go through

surgery. No one here in Santa Fe works with things like that in

children, so Me and my boyfriend have to drive to ALb. Once they

told me about the casting I figure that would be better! Anywho

I cried the whole time they were putting on the casts haha. But he

seems to be getting used to them. The first night was the worst.

I just wonder what I can do to make him feel comfotable. Im up to

hearing any suggestions,

Thanks!

Tina

> >

> > Hello Everyone My Name Is and my son has clubfoot. I

hope

> > that I can learn from everyone here and get some tips to make me

feel

> > better! lol Anyway he is three and a half months and just got

casts on

> > his legs yesterday. I will try to get pics up soon. Thanks

> > Tina

> >

>

[Guest guest]

Tina,

First of all, welcome to the group!

Secondly, I was glancing through the photos section and saw the new

pictures you just put in there of your son, Che. He is adorable!

I'm sorry you had a bit of delay in getting treatment started, but

hopefully you're in with a good doctor now.

These are the 3 doctors who are in Alb. listed on Dr. Ponseti's

qualified physician's list- are you going to one of them by chance?

Brown, MD

University of New Mexico

Health Sciences Center

Department of Orthopaedics & Rehabget to

Albuquerque, NM 87131-5296

Tel:

Bosch, MD

Assistant Professor, UNM/HSC

Pediatric Orthopaedics

Tingley Hospital

1127 University NE

Albuquerque, NM 87102-1715

Tel:

PBosch@...

M. Schwend, MD

Tingley Hospital

1127 University NE

Albuquerque, NM 67102-1715

Here's a link to Dr. Ponseti's website:

http://www.uihealthcare.com/topics/medicaldepartments/orthopaedics/cl

ubfeet/index.html

Here's a link to another site that has a comprehensive listing of

many different sites (personal family sites, medical sites etc.)

regarding the Ponseti method:

http://members.tripod.com/ponseti_links-ivil

Are the casts up to his upper thighs? Make sure that there is

plenty of padding (cotton batting) around his casts so that the skin

isn't being irritated. Also around the toes. You can purchase

moleskin (kind of a brown felt with an adhesive backing) at any

department store/pharmacy to cut pieces yourself and pad areas if

need be. Did they tell you how to squeeze his toes to check for

circulation? You slightly squeeze the toe so that it pales and then

let go and it should turn pink again right away as the blood flows

back in. If it stays white for an extended period of time, then his

circulation is being compromised.

I have a few general hints and tips and such at my daughter's

website (I'll paste the link below) if that helps any.

Did the doctor tell you what the treatment plan will be? Did he

estimate the number of casts needed and what kind of bracing will be

used after he's corrected? How often will the casts be changed?

I hope this helps.

We're glad you're here!

& (3-16-00, left clubfoot)

http://ponseticlubfoot.freeservers.com/

>

> Thanks!

> Um my Dr. Here in Santa Fe didnt send me to a specialist untill

now,

> I didnt know about casting I thought he would have to go through

> surgery. No one here in Santa Fe works with things like that in

> children, so Me and my boyfriend have to drive to ALb. Once they

> told me about the casting I figure that would be better! Anywho

> I cried the whole time they were putting on the casts haha. But he

> seems to be getting used to them. The first night was the worst.

> I just wonder what I can do to make him feel comfotable. Im up to

> hearing any suggestions,

> Thanks!

> Tina

[Guest guest]

Hi, Tina,

Welcome to you & your little one. What's his name? We're from

Los Alamos & drive to ABQ to see Dr. Schwend at Tingely

for treatment for our daughter Lily (she's 14 months old now; born

with a left clubfoot that was corrected with the Ponseti casting method).

Are you going to Tingley too?

Lily didn't complain much about her casts (maybe because she

was so young when we started & wasn't used to moving that

leg for very long), but I did put a small pillow under the cast

to help support it when she slept. I'm sure other parents will

have helpful suggestions!

And you're not the only mom who cried during the first set of casts.

I had tears streaming down my face the whole time. I knew it

was the best treatment for her. It was just hard to see my little

one in a cast (I was only 4 days postpartum, so the extra hormones

probably contributed too).

Anyway, we're so happy to have you here. Let us know what we

can do to help you on this journey!! Soon you'll have a perfect little

foot (feet? are both of his feet affected?).

Kim

wrote:

Thanks!

Um my Dr. Here in Santa Fe didnt send me to a specialist untill now,

I didnt know about casting I thought he would have to go through

surgery. No one here in Santa Fe works with things like that in

children, so Me and my boyfriend have to drive to ALb. Once they

told me about the casting I figure that would be better! Anywho

I cried the whole time they were putting on the casts haha. But he

seems to be getting used to them. The first night was the worst.

I just wonder what I can do to make him feel comfotable. Im up to

hearing any suggestions,

Thanks!

Tina

> >

> > Hello Everyone My Name Is and my son has clubfoot. I

hope

> > that I can learn from everyone here and get some tips to make me

feel

> > better! lol Anyway he is three and a half months and just got

casts on

> > his legs yesterday. I will try to get pics up soon. Thanks

> > Tina

> >

>

----------------------

New

new_kimberly@...

__________________________________________________

[Guest guest]

and

Thanks, I am going to a Dr. E Szalay at Tingley Hospital.

Thank you for the websites.Yea his casts are up to his thighs, His

circulation is good, that was the thing I was most concerned about

but it looks fine. The padding seems to be ok its not bugging the

skin on his legs and toes.The Dr. said I have to go in every week to

change the casts for at least 2-3 months than he will be put on the

brace for as long as 3 years. So I guess we will see how he handles

having those casts on for that long! I know he is going to hate it

lol but its for the best. Thanks for the tips and sites!!

Tina

> >

> > Thanks!

> > Um my Dr. Here in Santa Fe didnt send me to a specialist untill

> now,

> > I didnt know about casting I thought he would have to go through

> > surgery. No one here in Santa Fe works with things like that in

> > children, so Me and my boyfriend have to drive to ALb. Once they

> > told me about the casting I figure that would be better! Anywho

> > I cried the whole time they were putting on the casts haha. But

he

> > seems to be getting used to them. The first night was the worst.

> > I just wonder what I can do to make him feel comfotable. Im up

to

> > hearing any suggestions,

> > Thanks!

> > Tina

>

[Guest guest]

Hi Kim,

His name is Che (like shae) Yeah we see Dr. Szalay there at

Tingley. Yeah both of his feet are

I also put a pillow too, he likes that. I thought we had to drive

far but your drive is a little longer!! I wish New Mexico had more

doctors, haha. It nice meeting everyone here, Its nice having so

many that know what to do!!!

Tina

> > >

> > > Hello Everyone My Name Is and my son has clubfoot. I

> hope

> > > that I can learn from everyone here and get some tips to make

me

> feel

> > > better! lol Anyway he is three and a half months and just got

> casts on

> > > his legs yesterday. I will try to get pics up soon. Thanks

> > > Tina

> > >

> >

>

>

>

>

>

>

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

> New

> new_kimberly@...

> __________________________________________________

>

[Guest guest]

Dr. Szalay put on one of Lily's casts (Dr. Schwend was out of town).

She's very nice.

I think that in the standard Ponseti protocol, he should be out of

casts in roughly 2 months (or less). Did she think it might take

longer because his case was more severe or he was older? Anyway,

some of the more knowledgeable parents might be able to chime

in on that one (3 months just seems a bit long to me).

What a cute boy you have!

Kim

wrote:

Hi Kim,

His name is Che (like shae) Yeah we see Dr. Szalay there at

Tingley. Yeah both of his feet are

I also put a pillow too, he likes that. I thought we had to drive

far but your drive is a little longer!! I wish New Mexico had more

doctors, haha. It nice meeting everyone here, Its nice having so

many that know what to do!!!

Tina

> > >

> > > Hello Everyone My Name Is and my son has clubfoot. I

> hope

> > > that I can learn from everyone here and get some tips to make

me

> feel

> > > better! lol Anyway he is three and a half months and just got

> casts on

> > > his legs yesterday. I will try to get pics up soon. Thanks

> > > Tina

> > >

> >

>

>

>

>

>

>

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

> New

> new_kimberly@...

> __________________________________________________

>

[Guest guest]

Tina,

you may want to note that the Ponseti Method does not take 2-3 months

for casting. Standard time in casts is 5-7 weeks (weekly casts,

changed every 5-7 days) with 9 being the most needed in extremely

severe cases. The last cast stays on for 3w, so it's possible to be

in them for 3 months but typical is around 10 weeks total. Doc may

just be telling you 2-3 months to make sure he's given you enough

information to know that it may be that long but that's not

typical. Most kids are done by the time they are 12w old at the

oldest. My daughter was done by 5-1/2 weeks old although that could

be considered a bit early (and they only left the last cast on for

just over 2w which was not what was supposed to

happen). Additionally, the information we have now is that it's an

absolute minimum of 3y in the brace, and actually all kids should be

braced till 4yo at least if not 5y if they can tolerate it. Right

now, we're at 3+y, expecting to go to 4 and as long after that as

possible. The chance of relapse is reduced to less than 5% if you

can get to 5yo with bracing. Severity is not a factor in determining

how long to brace, all CF children should be shooting for 4yo at minimum.

Casts are actually the easy part, your little man will be fine and

casting will be over before you know it. Enjoy him!

Just make sure you know as much about this as possible so that you

can spot any red flags when and if they arise. Research and education

is your key to success and it looks like you're doing just that! Good MAMA!!!

Welcome!

Kori

At 10:38 AM 6/8/2006, you wrote:

>and

>Thanks, I am going to a Dr. E Szalay at Tingley Hospital.

>Thank you for the websites.Yea his casts are up to his thighs, His

>circulation is good, that was the thing I was most concerned about

>but it looks fine. The padding seems to be ok its not bugging the

>skin on his legs and toes.The Dr. said I have to go in every week to

>change the casts for at least 2-3 months than he will be put on the

>brace for as long as 3 years. So I guess we will see how he handles

>having those casts on for that long! I know he is going to hate it

>lol but its for the best. Thanks for the tips and sites!!

>Tina

>

>

> > >

> > > Thanks!

> > > Um my Dr. Here in Santa Fe didnt send me to a specialist untill

> > now,

> > > I didnt know about casting I thought he would have to go through

> > > surgery. No one here in Santa Fe works with things like that in

> > > children, so Me and my boyfriend have to drive to ALb. Once they

> > > told me about the casting I figure that would be better! Anywho

> > > I cried the whole time they were putting on the casts haha. But

>he

> > > seems to be getting used to them. The first night was the worst.

> > > I just wonder what I can do to make him feel comfotable. Im up

>to

> > > hearing any suggestions,

> > > Thanks!

> > > Tina

> >

>

>

[Guest guest]

Hi Kori,

Thnks for the info!Yeah they were prob just telling me that to give

me the idea of how long this takes. His feet are not that bad I

think the casting wont take as long as they told me.But I will do

whatever it takes no matter how long to help him get better. Thanks

to all of you for the info I am glad there you guys to help me get

all the info I need. Thank you very much!!

> > > >

> > > > Thanks!

> > > > Um my Dr. Here in Santa Fe didnt send me to a specialist

untill

> > > now,

> > > > I didnt know about casting I thought he would have to go

through

> > > > surgery. No one here in Santa Fe works with things like that

in

> > > > children, so Me and my boyfriend have to drive to ALb. Once

they

> > > > told me about the casting I figure that would be better!

Anywho

> > > > I cried the whole time they were putting on the casts haha.

But

> >he

> > > > seems to be getting used to them. The first night was the

worst.

> > > > I just wonder what I can do to make him feel comfotable. Im

up

> >to

> > > > hearing any suggestions,

> > > > Thanks!

> > > > Tina

> > >

> >

> >

>

>

>

[Guest guest]

Hi again Tina,

Glad to see you are getting a lot of good information. I just wanted

to chime in on the length of time in casts issue - you mentioned that

you'll " do whatever it takes no matter how long to help him get

better " . I understand what you are saying, but I just wanted to take

it a step further and tell you to just keep an eye on this -- if it

does get to be 7 or 8 casts (2 months) and you are not seeing any

further improvement, this is a red flag signifying that Dr. Szalay

could be either having trouble or making some errors in the

manipulation process. At that point you may want to get a second

opinion - maybe from Dr. Schwend that Kim sees there. The

manipulation of the bones of the foot is key in making the correction

and if it is taking a long time or if correction has stalled that

usually signifies that there is a problem. Not to worry you or

anything, just so you know what to look for and how to know if things

are progressing the way they should be.

Best wishes,

Mom to Jenna (4/7/01) & Sam (9/25/04, RCF, Dobbs brace 12-14hrs/day)

> > > > >

> > > > > Thanks!

> > > > > Um my Dr. Here in Santa Fe didnt send me to a specialist

> untill

> > > > now,

> > > > > I didnt know about casting I thought he would have to go

> through

> > > > > surgery. No one here in Santa Fe works with things like that

> in

> > > > > children, so Me and my boyfriend have to drive to ALb. Once

> they

> > > > > told me about the casting I figure that would be better!

> Anywho

> > > > > I cried the whole time they were putting on the casts haha.

> But

> > >he

> > > > > seems to be getting used to them. The first night was the

> worst.

> > > > > I just wonder what I can do to make him feel comfotable. Im

> up

> > >to

> > > > > hearing any suggestions,

> > > > > Thanks!

> > > > > Tina

> > > >

> > >

> > >

> >

> >

> >

[Guest guest]

Hello! Welcome to the group and congratulations on your son!

The good news is that it is definitely not too late to get started

with the Ponseti method, the rule of thumb for still being able to

achieve excellent results with the method is 18 months so you are well

within that time frame. There actually are children who are much

older than this who are being treated with the method. I'm sure

you'll hear from Joyce, a mom here who adopted a little girl from

China, her daughter was older, I think about 3 when they brought her

home and she had been walking on her untreated feet. The Ponseti

method has been a huge help to them, while they haven't been able to

entirely avoid surgery, the results have just been amazing. But

anyway, I'll leave the rest of the story for Joyce to tell.

Even though you are coming in to treatment a little later, you are

also coming in with the best of circumstances. The fact that his feet

have not been treated at all yet is actually a plus for you -- if they

had been treated in China, but improperly it could have made it more

difficult to correct once he got here.

There is one doctor in Colorado on Dr. Ponseti's qualified physician

list, here is his contact info:

J. Hatch, DPM

Foot and Ankle Center

1931 65th Avenue, Ste. A

Greeley CO 80631

Phone

dhatch@...

I don't know a lot about Dr. Hatch, but you can search the archives of

the group to see if you can find any other references to him and

other's experiences.

At 8 months you will want to be sure you select a doctor who has

experience treating " older " babies. Also, the good news is that you

are not terribly far from Iowa City, so if needed you might be able to

swing a trip to see Dr. Ponseti himself.

One other really great resource you should check out for lots and lots

of info regarding clubfoot and the Ponseti treatment process:

http://members.tripod.com/ponseti_links-ivil/index.html

Hope this is helpful,

Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12hrs/day)

>

> Hello, Im new to this group it was recomended to me by someone in the

> surgical group. I am adopting a little boy from Chin who was born

> with bilateral clubfeet. He is now 8 months old and we are hoping to

> have him home near his first bithday. He has received no treatment.

> I am trying to get organized so I can hit the ground running when we

> get him home. I have done lots of reading on all methods and now am

> trying to figure out how to find Dr's in my area that are good at

> treating a child around a year. We are hoping to avoid surgery, but I

> do relize we are getting a late start. Im located near Denver

> Colorado. Does any one have any suggestions as to where I might start.

>

> Thanks

>

[Guest guest]

Hello and welcome. It is great you are researching ahead of time. Like

said, it isn't too late to begin the Ponseti method. I wanted to add though I

think you should really look into going to Dr. Ponseti himself. Because of his

age, you want the absolute best treatment you can come by. This will assure a

smoother road with less stress for you. There is a Mc House in

Iowa to stay in and I believe Angel Flights is out that way as well.

You could also email Dr. Ponseti himself to get his opinion.

HTH. Congrats on your new baby!

dhills6boy wrote:

Hello, Im new to this group it was recomended to me by someone in the

surgical group. I am adopting a little boy from Chin who was born

with bilateral clubfeet. He is now 8 months old and we are hoping to

have him home near his first bithday. He has received no treatment.

I am trying to get organized so I can hit the ground running when we

get him home. I have done lots of reading on all methods and now am

trying to figure out how to find Dr's in my area that are good at

treating a child around a year. We are hoping to avoid surgery, but I

do relize we are getting a late start. Im located near Denver

Colorado. Does any one have any suggestions as to where I might start.

Thanks

---------------------------------

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

[Guest guest]

Congratulations on your adoption! Sounds like you are doing a great

job getting prepared for your son's arrival in every way. We also

adopted a son with bilateral clubfeet, from the island of Samoa.

Although he came home at 6 months, he also was starting from the

beginning as far as treatment. 12 months old is still well within

the age Dr. Ponseti recommends for best correction, so don't worry,

you have quite a bit of wiggle room as far as time. The process may

be slower, with a little more time in between cast changes, or an

extra cast or two. But you should still see an amazing change from

cast to cast, and experience a good outcome.

Dr. Ponseti and Dr. Morcuende both felt our son's feet responded to

casting like a child who was much older than 6 months (less

flexible, less movement of the foot from cast to cast), yet today at

3 yrs. old he has flexible, sturdy feet which even doctors do not

realize were clubbed.

I'd recommend you obtain as much information as you can before you

begin with treatment, including photos of feet in the process of

treatment so that you can be confident that your doctor is correctly

performing the Ponseti method. Especially with a child who is

starting treatment later, you want the doctor to do things correctly

the first time. Some doctors say they are practicing the Ponseti

method, yet have revised it despite its proven track record, and

families find themselves starting again with a second doctor due to

poor correction. Also, I wouldn't hesitate to meet with doctors

prior to your trip to China. Iowa City is a long trip for you, so

treatment by the doctor himself may not be possible, but

perhaps you could take a trip there prior to your child's homecoming

to see the master himself at work? Once you meet with him and see

how he deals children and their family, it could give you that much

more information before you begin. He often has visiting doctors

studying his method, perhaps he wouldn't mind a visiting parent as

well. He's an amazing man, and his staff is wonderful too. We

drove from Omaha weekly for treatment, and the love, kindness and

skill we received always made the drive seem inconsequential.

All the best, we'll be thinking of you as you complete the process

for your wonderful boy!

Caroline

>

> Hello, Im new to this group it was recomended to me by someone in

the

> surgical group. I am adopting a little boy from Chin who was born

> with bilateral clubfeet. He is now 8 months old and we are hoping

to

> have him home near his first bithday. He has received no

treatment.

> I am trying to get organized so I can hit the ground running when

we

> get him home. I have done lots of reading on all methods and now

am

> trying to figure out how to find Dr's in my area that are good at

> treating a child around a year. We are hoping to avoid surgery,

but I

> do relize we are getting a late start. Im located near Denver

> Colorado. Does any one have any suggestions as to where I might

start.

>

> Thanks

>

[Guest guest]

Dana-

I'm just sending you a hug and a prayer. I don't know what all you are

dealing with , but it is so challenging when your child has multiple issues.

Take a deep breath, and hang on! My husband and I sometimes break down our

day into minutes- " if we get through the next minute we''ll be ok " it helps

not to try and solve it all at once.

Teena

Ben ASD Dyspraxia SID multiple allergies

SCD 4 weeks

[Guest guest]

Dyane,

Nothing better then a little zanax. And making fun of songs and changing the

words is great. Me and my friends can do it for hours and laugh so hard I cant

breathe, I guess not a good idea, LOL. Especially some of those corny 80's

tunes.

Dave, 43, Miami, UIP 11/09

> > >

> > > 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]

Well said Bruce!

Patti, 59, Indianapolis, IPF 2007

[Guest guest]

Dyane

Well, did actually do some industrial engineering....but still not by

education an engineer.

> > > > >

> > > > >

> > > > > 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]

LOL! This was funny about the Pat benetar song! Made me laff!! hehe!Donna(Iowa)To: Breathe-Support Sent: Thu, December 3, 2009 12:06:50 AMSubject: 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]

Bruce,

Wow didn't know you a)were in Texas and were an Accountant like me

but then you are more like a CPA type guy. I love my job but I'm not a

boss type person. My middle daughter lives in Midlothian so put me in

for Texas if I can make it.

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 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]

Dave,

Thanks, nice to know someone else has my weird sense of humor LOL

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]

Bruce,

In a sense, you have created the "stages" fro yourself in your own way.....that's good, I have pretty much done the same. I know there will come a time that I will have to change my life based on my overall health and O2 levels. I cannot predict things like pneumonia, bronchitis etc but,.... bar the unforeseen, I KNOW my O2 levels will change at some point and affect my life. As you and Beth have suggested I am enjoying life, and I will continue to do so through all Stages of O2 needs but I know I will have to change my life more than once, based on my needs for O2. Life is good!...I began saying that waaay before it became popular and on T shirts and bumper stickers all over the place. My wife is sick of it! LOL Thank you for your responses,,,,

From: Bruce <brucemoreland@ gmail.com>Subject: Re: new to the groupTo: Breathe-Support@ yahoogroups. comDate: 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!!>

[Guest guest]

You can't predict things like pneumonia and bronchitis but you can

control your actions. I've been exceedingly fortunate to avoid such

things. However, I don't attribute that all to luck.

I have avoided unnecessary exposure to germs and taken every precaution

I can. When I pick up a prescription, I don't go inside to the counter

and stand with sick people. I also don't use their pen at the window and

I wear gloves at the drive through. I consider pharmacies and general

practitioner offices scary. lol. But, I don't let this avoidance keep me

from enjoying life and doing things. When got the flu we avoided

being in the same room of the house for the entire period. I also took

Tamiflu as a precaution. Result, no flu.

But the other thing I've learned from here, from both those who followed

this rule and those who didn't, is if anything comes up get immediate

treatment. There is no such thing as a simple cold for any of us. Even

the simplest could turn into an infection and pneumonia. That doesn't

mean live in fear, but it means respect the risk. It means get over the

hate of hospitals even because if you get hit hard that may be where you

need to be to get back on the good path. They can hit you with more

drugs, faster, and can watch you. It means don't come on here asking if

you need to go to the doctor, because the answer to that always is that

if that is even a question, you need to go. On another forum we told

someone who was debating whether to wait for her son the next day to

call an ambulance right then. They told her at the hospital she wouldn't

have survived until the next day but five days later she was released

and in good shape. I told someone here on Wednesday to go immediately.

They waited for their already scheduled Friday doctor's appointment.

They were admitted but never recovered completely and died. I don't know

if it could have been different and never will, but will always wish I

could have found a way to be more insistent.

We also face other conditions and diseases that are treatable from

hypothyroidism to kidney infections to Vitamin D deficiencies to GERD to

sleep disorders to sore knees or ankles to headaches to diabetes. We

have to be vigilant in taking care of anything else so we feel the best

we can.

I can't change my disease. But I can make the most of life and I can try

to make sure that nothing else takes me first so at the very least I get

the full run of life that my lungs possibly have in them. I'm committed

to no complications or other diseases (such as PH) taking me first.

> >

> >

> > 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 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]

Bruce,

Once again, you explain these things so well. Early on, when I was merely a "lurker" on this site, I saw advise you gave to someone else, don't wait..Go now! If you feel sick get help now....not later! Later may be too late.

So , when I started coughing, like I do most mornings, but I saw Yellow instead of clear, I immediately called the plum and he called in a prescription for a kit that cured me. Thanks again, I dodged a bullet, and you showed me how to do it. Thanks to you and this board I have lived better and enjoyed more. Thanks to you all.

Subject: Re: new to the groupTo: Breathe-Support Date: Thursday, December 3, 2009, 1:33 PM

You can't predict things like pneumonia and bronchitis but you cancontrol your actions. I've been exceedingly fortunate to avoid suchthings. However, I don't attribute that all to luck.I have avoided unnecessary exposure to germs and taken every precautionI can. When I pick up a prescription, I don't go inside to the counterand stand with sick people. I also don't use their pen at the window andI wear gloves at the drive through. I consider pharmacies and generalpractitioner offices scary. lol. But, I don't let this avoidance keep mefrom enjoying life and doing things. When got the flu we avoidedbeing in the same room of the house for the entire period. I also tookTamiflu as a precaution. Result, no flu.But the other thing I've learned from here, from both those who followedthis rule and those who didn't, is if anything comes up get immediatetreatment.

There is no such thing as a simple cold for any of us. Eventhe simplest could turn into an infection and pneumonia. That doesn'tmean live in fear, but it means respect the risk. It means get over thehate of hospitals even because if you get hit hard that may be where youneed to be to get back on the good path. They can hit you with moredrugs, faster, and can watch you. It means don't come on here asking ifyou need to go to the doctor, because the answer to that always is thatif that is even a question, you need to go. On another forum we toldsomeone who was debating whether to wait for her son the next day tocall an ambulance right then. They told her at the hospital she wouldn'thave survived until the next day but five days later she was releasedand in good shape. I told someone here on Wednesday to go immediately.They waited for their already scheduled Friday doctor's appointment.They were admitted

but never recovered completely and died. I don't knowif it could have been different and never will, but will always wish Icould have found a way to be more insistent.We also face other conditions and diseases that are treatable fromhypothyroidism to kidney infections to Vitamin D deficiencies to GERD tosleep disorders to sore knees or ankles to headaches to diabetes. Wehave to be vigilant in taking care of anything else so we feel the bestwe can.I can't change my disease. But I can make the most of life and I can tryto make sure that nothing else takes me first so at the very least I getthe full run of life that my lungs possibly have in them. I'm committedto no complications or other diseases (such as PH) taking me first.> >> >> > 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 reasonto> look for a group like this but I hope that you find it asÂhelpful> 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 tohear> you are going to the University of Chicago. They have a greatreputation> 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'min> 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, thereis> 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 andwas> 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 wasso> mild that they thought it may have been there for years. I continuedto> 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 tothe> entire lung area. My PFT had dropped from 79 to 60 in two years. Istill> feel just fine but the doctor says it is time for Prednisone. I havean> 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 scaresme.> They make it sound like a death sentence. Again I am so happy to find> this group!!> >>

[Guest guest]

I think the hose gods are after us.........I have to check each day to see if my ears are there

<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 10:30:53 AMSubject: Re: Re: new to the group

i'm not paralyzed and i get tangled up in the hoses

about a month ago i fell flat on my face when i tripped on the hose

had a bad case of whiplash the following day

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: Wednesday, December 2, 2009, 1:34 PM

Thanks for that bruce....... .....I don't know what stage I'm in been several years since dx..I only know I need o2 when I'm mobile...... ..4 usually up 6 6 on inclines..usually 0 to 2 when rested

Since I'm partially paralyzed I get tangled up in the hoses......big mess

<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: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Wed, December 2, 2009 1:21:33 PMSubject: Re: new to the group

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!!>

[Guest guest]

That's scary. I think my tubing is alive and it wraps itself around my legs. I haven't fallen yet but I think it is just a matter of time.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: Wednesday, December 2, 2009, 1:34 PM

Thanks for that bruce....... .....I don't know what stage I'm in been several years since dx..I only know I need o2 when I'm mobile...... ..4 usually up 6 6 on inclines..usually 0 to 2 when rested

Since I'm partially paralyzed I get tangled up in the hoses......big mess

<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: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Wed, December 2, 2009 1:21:33 PMSubject: Re: new to the group

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!!>

[Guest guest]

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,

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@> 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!!> >>