Re: Claire

[Guest guest]

there are lots of information out on the internet and some of

it is pretty scary. Not sure if you all talk a lot or not but you

could talk about what people are experiencing here that way by

referencing other people here doesnt put the focus so much on you yet

brings the subject up. Or int he Files part of our group here is a

link to the Patient informaiton Booklet that is a good resource to

get to know what it is, what to expect, information for family and

friends, etc.

I am glad you responded to Ken about the seminar in Boston, I think

that would be great for you!

Sandie

> >

> > Hi, am new at this. i was diagnosed with pf 1 year ago, also

> emphzema. has not progressed much as of July. Don't really know

what to

> expect. don't really like doc. I am supposed to use oxygen at 2 for

> exercise and I have resisted but i feel I need to. going to mailbox

or

> up stairs my level goes to about 77-78. I guess that is not good.

> considering moving downstairs to den but feel like i am giving in.

Know

> I am rambling but not sure what to ask. Is progression very

individual?

> Glad for some answers.

> >

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

> > Looking for last minute shopping deals? Find them fast with

Yahoo!

> Search.

> >

>

>

>

>

>

>

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

> Be a better friend, newshound, and know-it-all with Yahoo! Mobile.

Try it now.

>

[Guest guest]

, It's good to meet you. I'm a

potter with the messy clay!!!

I've posted a few pictures of my latest endeavor..a clay sculpture of a

carousel horse head.

I love carousels and clay so the project was very fulfilling.

I sign off with these interests.

It's also nice to have another person here from the North East...there

are many very nice Texans

here.. but.I feel out-numbered!!

I stopped teaching at the community college at the end of the May 2005

semester due to my Dad's passing.

I became ill a few months later so I never went back to work. I missed

it the following September term but no longer.

I'm too busy battling this NSIP each day .

Z fibriotic NSIP/05

Z

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

Potter,

reader,carousel lover and MomMom to

Darah

“I’m gonna

be iron like a lion in Zion” Bob Marley

claire smith wrote:

Hi, Thanks for the support. I live in Tiverton, Rhode Island so am

pretty close to Boston. Maybe it would be a good choice to go there. I

am 66,married, newly retired, love reading, poetry, dabbling in polymer

clay. This e-mail is pretty unusual for me. I am usually pretty private

but I feel pretty alone with this. I am not sure how bad I am. I just

know it is getting harder to get my breath and I have no energy.

Diagnosed June 06' with ipf and emphzema. right now have a cold and it

went right to my lungs. Again thanks for support.

Joyce <janne5303> wrote:

,

You will get

about 1,000 responses telling you to use your 02! It is the best

medicine for what ails you! Never push yourself when your 02 has

dropped solow. Sit, immediatly, and slump. Breathe with mouth open

until you bring your numbers up into the nineties. Trust me on this.

Do not keep

seeing a doc that you don't like. Your very life depends on your

medical care. If you live in an area where it is possible, seek out a

hospital and physician that specializes in interstitial lung diseases.

Teaching hospitals are usually better.

Yes, progression

is very individual. There no absolutes with this mess.

And,

lastly.....you landed in a good place. You will love us!

Hugs, Joyce D.

PULMONARY FIBROSIS/LUPUS 1997

BRONCHIECTASIS 2004 INDIANA

2 COR. 12:10 ....when I am weak,

then I am strong.

>

> Hi, am new at this. i was diagnosed with pf 1 year ago, also

emphzema. has not progressed much as of July. Don't really know what to

expect. don't really like doc. I am supposed to use oxygen at 2 for

exercise and I have resisted but i feel I need to. going to mailbox or

up stairs my level goes to about 77-78. I guess that is not good.

considering moving downstairs to den but feel like i am giving in. Know

I am rambling but not sure what to ask. Is progression very individual?

Glad for some answers.

>

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

> Looking for last minute shopping deals? Find them fast with Yahoo!

Search.

>

Looking for last minute shopping deals?

Find them fast with Yahoo! Search.

No virus found in this incoming message.

Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.0/1216 - Release Date: 1/9/2008 10:16 AM

[Guest guest]

Hello ,

Let me give you a welcome from not so sunny England. I will echo the others and say that O2 is definitely your friend, I've only been on it since November and it has definitely made a difference to my days. I am on it full time which is a pain, but being able to do things and say awake properly is ample compensation. I would also recommend getting an oximeter so that you can learn what puts a strain on your system and what doesn't. My sats often drop low, but I don't get out of breath until they're into the low 70's, and then I feel ok to get going again while my sats are in the low 80's, so now I use the oximeter to make sure they don't go that low and that they are up high enough before I get going again. Some things have surprised me. Driving drops them down a bit more than I would have expected, but at least now I know.

Taking the O2 isn't giving in, it's giving you more power to fight.

Love Ze xx>> ,> Dropping to 77-78 is definitely NOT good. I often> fall that low, but when it happens to me I'm usually> on 15 liters of oxygen. It sounds like your life would> definitely improve if you used your 02. Also, don't> forget the damage you do to the rest of your body> when it's starved for air. Oxygen is your friend.> Using it or accommodating your life to it is not> "giving in", it is taking care of yourself in order to> prolong your life. You're doing battle with a bully,> and you have to try to stay ahead of it.> > You say you don't like your doc. Is he a pulmonologist?> How were you diagnosed? You need to find a doctor> that you like and trust, preferably at one of the larger> teaching hospitals that has a department for> interstitial lung diseases (like PF). Also, ask lots of> questions (take a list with you to the doc) and keep> records of your healthcare. You can't manage your> disease, but you can manage your healthcare. Most> of us could write books about how that has been a> full-time job for us since diagnosis, sorry to say.> > Progression is very individual. It can move slowly or> quite rapidly. What often happens to people is that> their disease will progress somewhat (e.g., they have> less energy, cough & wheeze more, their sats drop> farther and more often, etc.), then they'll plauteau> out and stabilize. How long each plateau lasts is> totally variable and even varies within the same> person. I've been at end stage IPF for over a year,> with high 02 flows, little energy, poor test results,> etc. I've been waiting for new lungs since March 2007;> however, I've never fainted, never been to the ER,> still have a healthy heart, and am relatively stable.> I still get out and go places away from home with> friends and family... not as often, but I still go.> > This disease has a way of sneaking up on us.> Don't wait until you are in a panic situation to do> something. You're better off to anticipate problems,> do some research, prepare for changes in breathing> and mobility, and make the lifestyle changes that you> need in order to facilitate your life and keep active.> Keep moving as long as you can, preferably at a> Pulmonary Rehab program, which can improve exercise> tolerance if started early enough. It sounds like you> already have a pulse oximeter, which is also a must for> most of us.> > I'm sorry you have to deal with PF along with emphysema,> but this site is a great place with honest, caring people> to help you learn how to LIVE with your disease. We'd> love to hear more about you. We usually close with our> name, diagnosis (dx) date, and place of residence. Welcome.> > Hugs,> Gwynne IPF 7/04 listed for transplant 3/07 Texas>

[Guest guest]

Hi Zen, Thats for the imput.I guess I have ochoice but to use it. I do use when I am on the .startionary bike, I could not do it without the 02. I love your country. I have interersy in early England. Queen etc. My mother and sister's name is Mercia, a kingdow in ancient England. If I truly believe in reincarnation I would say I live there in another life. Thanks again. ipf 06'Zena wrote: Hello , Let me give you a welcome from not so sunny England. I will echo the others and say that O2 is definitely your friend, I've only been on it since November and it has definitely made a difference to my days. I am on it full time which is a pain, but being able to do things and say awake properly is ample compensation. I would also recommend getting an oximeter so that you can learn what puts a strain on your system and what doesn't. My sats often drop low, but I don't get out of breath until they're into the low 70's, and then I feel ok to get going again while my sats are in the low 80's, so now I use the oximeter to make sure they don't go that low and that they are up high enough before I get going again. Some things have surprised me. Driving drops them down a bit more than I would have expected, but at least now I know. Taking the O2 isn't giving in, it's giving you more power to fight. Love Ze xx>> ,> Dropping to 77-78 is definitely NOT good. I often> fall that low, but when it happens to me I'm usually> on 15 liters of oxygen. It sounds like your life would> definitely improve if you used your 02. Also, don't> forget the damage you do to the rest of your body> when it's starved for air. Oxygen is your friend.> Using it or accommodating your life to it is not> "giving in", it is taking care of yourself in order to> prolong your life. You're doing battle with a bully,> and you have to try to stay ahead of it.> > You say you don't like your doc. Is he a

pulmonologist?> How were you diagnosed? You need to find a doctor> that you like and trust, preferably at one of the larger> teaching hospitals that has a department for> interstitial lung diseases (like PF). Also, ask lots of> questions (take a list with you to the doc) and keep> records of your healthcare. You can't manage your> disease, but you can manage your healthcare. Most> of us could write books about how that has been a> full-time job for us since diagnosis, sorry to say.> > Progression is very individual. It can move slowly or> quite rapidly. What often happens to people is that> their disease will progress somewhat (e.g., they have> less energy, cough & wheeze more, their sats drop> farther and more often, etc.), then they'll plauteau> out and stabilize. How long each plateau lasts is> totally variable and even varies within the

same> person. I've been at end stage IPF for over a year,> with high 02 flows, little energy, poor test results,> etc. I've been waiting for new lungs since March 2007;> however, I've never fainted, never been to the ER,> still have a healthy heart, and am relatively stable.> I still get out and go places away from home with> friends and family... not as often, but I still go.> > This disease has a way of sneaking up on us.> Don't wait until you are in a panic situation to do> something. You're better off to anticipate problems,> do some research, prepare for changes in breathing> and mobility, and make the lifestyle changes that you> need in order to facilitate your life and keep active.> Keep moving as long as you can, preferably at a> Pulmonary Rehab program, which can improve exercise> tolerance if started early enough. It sounds like you>

already have a pulse oximeter, which is also a must for> most of us.> > I'm sorry you have to deal with PF along with emphysema,> but this site is a great place with honest, caring people> to help you learn how to LIVE with your disease. We'd> love to hear more about you. We usually close with our> name, diagnosis (dx) date, and place of residence. Welcome.> > Hugs,> Gwynne IPF 7/04 listed for transplant 3/07 Texas>

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

I'm an East Saxon myself! I do 17th Century re-enacting, but I can't do so much now that I'm on the O2, I'm trying to find out if I can have an authentic costume with some sort of veil to hide the cannulas! Otherwise I'll just have to stay in the beer tent! That's a pity

Love Ze

> >> > ,> > Dropping to 77-78 is definitely NOT good. I often> > fall that low, but when it happens to me I'm usually> > on 15 liters of oxygen. It sounds like your life would> > definitely improve if you used your 02. Also, don't> > forget the damage you do to the rest of your body> > when it's starved for air. Oxygen is your friend.> > Using it or accommodating your life to it is not> > "giving in", it is taking care of yourself in order to> > prolong your life. You're doing battle with a bully,> > and you have to try to stay ahead of it.> > > > You say you don't like your doc. Is he a pulmonologist?> > How were you diagnosed? You need to find a doctor> > that you like and trust, preferably at one of the larger> > teaching hospitals that has a department for> > interstitial lung diseases (like PF). Also, ask lots of> > questions (take a list with you to the doc) and keep> > records of your healthcare. You can't manage your> > disease, but you can manage your healthcare. Most> > of us could write books about how that has been a> > full-time job for us since diagnosis, sorry to say.> > > > Progression is very individual. It can move slowly or> > quite rapidly. What often happens to people is that> > their disease will progress somewhat (e.g., they have> > less energy, cough & wheeze more, their sats drop> > farther and more often, etc.), then they'll plauteau> > out and stabilize. How long each plateau lasts is> > totally variable and even varies within the same> > person. I've been at end stage IPF for over a year,> > with high 02 flows, little energy, poor test results,> > etc. I've been waiting for new lungs since March 2007;> > however, I've never fainted, never been to the ER,> > still have a healthy heart, and am relatively stable.> > I still get out and go places away from home with> > friends and family... not as often, but I still go.> > > > This disease has a way of sneaking up on us.> > Don't wait until you are in a panic situation to do> > something. You're better off to anticipate problems,> > do some research, prepare for changes in breathing> > and mobility, and make the lifestyle changes that you> > need in order to facilitate your life and keep active.> > Keep moving as long as you can, preferably at a> > Pulmonary Rehab program, which can improve exercise> > tolerance if started early enough. It sounds like you> > already have a pulse oximeter, which is also a must for> > most of us.> > > > I'm sorry you have to deal with PF along with emphysema,> > but this site is a great place with honest, caring people> > to help you learn how to LIVE with your disease. We'd> > love to hear more about you. We usually close with our> > name, diagnosis (dx) date, and place of residence. Welcome.> > > > Hugs,> > Gwynne IPF 7/04 listed for transplant 3/07 Texas> >> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.>

[Guest guest]

Zena, Sometimes we learn so much from others posts. I have never checked my oximeter when I am driving and have no idea if I drop low but after reading your post I am betting that it is why I feel so tired when I go for long drives. I never use my oxygen until I get out of the car because I don't usually need it when I am sitting. I am going to check today and see if I drop also. Thanks- Sarcoid/PF 3/2006 California Re:

Hello ,

Let me give you a welcome from not so sunny England. I will echo the others and say that O2 is definitely your friend, I've only been on it since November and it has definitely made a difference to my days. I am on it full time which is a pain, but being able to do things and say awake properly is ample compensation. I would also recommend getting an oximeter so that you can learn what puts a strain on your system and what doesn't. My sats often drop low, but I don't get out of breath until they're into the low 70's, and then I feel ok to get going again while my sats are in the low 80's, so now I use the oximeter to make sure they don't go that low and that they are up high enough before I get going again. Some things have surprised me. Driving drops them down a bit more than I would have expected, but at least now I

know.

Taking the O2 isn't giving in, it's giving you more power to fight.

Love Ze xx>> ,> Dropping to 77-78 is definitely NOT good. I often> fall that low, but when it happens to me I'm usually> on 15 liters of oxygen. It sounds like your life would> definitely improve if you used your 02. Also, don't> forget the damage you do to the rest of your body> when it's starved for air. Oxygen is your friend.> Using it or accommodating your life to it is not> "giving in", it is taking care of yourself in order to> prolong your life. You're doing battle with a bully,> and you have to try to stay ahead of it.> > You say you don't like your doc. Is he a pulmonologist?> How were you diagnosed? You need to find a doctor> that you like and trust, preferably at one of the larger>

teaching hospitals that has a department for> interstitial lung diseases (like PF). Also, ask lots of> questions (take a list with you to the doc) and keep> records of your healthcare. You can't manage your> disease, but you can manage your healthcare. Most> of us could write books about how that has been a> full-time job for us since diagnosis, sorry to say.> > Progression is very individual. It can move slowly or> quite rapidly. What often happens to people is that> their disease will progress somewhat (e.g., they have> less energy, cough & wheeze more, their sats drop> farther and more often, etc.), then they'll plauteau> out and stabilize. How long each plateau lasts is> totally variable and even varies within the same> person. I've been at end stage IPF for over a year,> with high 02 flows, little energy, poor test results,>

etc. I've been waiting for new lungs since March 2007;> however, I've never fainted, never been to the ER,> still have a healthy heart, and am relatively stable.> I still get out and go places away from home with> friends and family... not as often, but I still go.> > This disease has a way of sneaking up on us.> Don't wait until you are in a panic situation to do> something. You're better off to anticipate problems,> do some research, prepare for changes in breathing> and mobility, and make the lifestyle changes that you> need in order to facilitate your life and keep active.> Keep moving as long as you can, preferably at a> Pulmonary Rehab program, which can improve exercise> tolerance if started early enough. It sounds like you> already have a pulse oximeter, which is also a must for> most of us.> > I'm sorry you have to deal

with PF along with emphysema,> but this site is a great place with honest, caring people> to help you learn how to LIVE with your disease. We'd> love to hear more about you. We usually close with our> name, diagnosis (dx) date, and place of residence. Welcome.> > Hugs,> Gwynne IPF 7/04 listed for transplant 3/07 Texas>

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

For further confusion, sometimes I need it and sometimes I don't.

Going to Tulsa, I needed it on a very low flow. Coming home, once I

got settled in, not at all. Generally do need it at least at first.

Could it be uphill versus downhill or pneumonia better or weather or

that I was more rested or less worried. I sure don't know.

> >

> > ,

> > Dropping to 77-78 is definitely NOT good. I often

> > fall that low, but when it happens to me I'm usually

> > on 15 liters of oxygen. It sounds like your life would

> > definitely improve if you used your 02. Also, don't

> > forget the damage you do to the rest of your body

> > when it's starved for air. Oxygen is your friend.

> > Using it or accommodating your life to it is not

> > " giving in " , it is taking care of yourself in order to

> > prolong your life. You're doing battle with a bully,

> > and you have to try to stay ahead of it.

> >

> > You say you don't like your doc. Is he a pulmonologist?

> > How were you diagnosed? You need to find a doctor

> > that you like and trust, preferably at one of the larger

> > teaching hospitals that has a department for

> > interstitial lung diseases (like PF). Also, ask lots of

> > questions (take a list with you to the doc) and keep

> > records of your healthcare. You can't manage your

> > disease, but you can manage your healthcare. Most

> > of us could write books about how that has been a

> > full-time job for us since diagnosis, sorry to say.

> >

> > Progression is very individual. It can move slowly or

> > quite rapidly. What often happens to people is that

> > their disease will progress somewhat (e.g., they have

> > less energy, cough & wheeze more, their sats drop

> > farther and more often, etc.), then they'll plauteau

> > out and stabilize. How long each plateau lasts is

> > totally variable and even varies within the same

> > person. I've been at end stage IPF for over a year,

> > with high 02 flows, little energy, poor test results,

> > etc. I've been waiting for new lungs since March 2007;

> > however, I've never fainted, never been to the ER,

> > still have a healthy heart, and am relatively stable.

> > I still get out and go places away from home with

> > friends and family... not as often, but I still go.

> >

> > This disease has a way of sneaking up on us.

> > Don't wait until you are in a panic situation to do

> > something. You're better off to anticipate problems,

> > do some research, prepare for changes in breathing

> > and mobility, and make the lifestyle changes that you

> > need in order to facilitate your life and keep active.

> > Keep moving as long as you can, preferably at a

> > Pulmonary Rehab program, which can improve exercise

> > tolerance if started early enough. It sounds like you

> > already have a pulse oximeter, which is also a must for

> > most of us.

> >

> > I'm sorry you have to deal with PF along with emphysema,

> > but this site is a great place with honest, caring people

> > to help you learn how to LIVE with your disease. We'd

> > love to hear more about you. We usually close with our

> > name, diagnosis (dx) date, and place of residence. Welcome.

> >

> > Hugs,

> > Gwynne IPF 7/04 listed for transplant 3/07 Texas

> >

>

>

>

>

>

>

>

>

>

>

>

>

> <!--

>

> #ygrp-mkp{

> border:1px solid #d8d8d8;font-family:Arial;margin:14px

0px;padding:0px 14px;}

> #ygrp-mkp hr{

> border:1px solid #d8d8d8;}

> #ygrp-mkp #hd{

> color:#628c2a;font-size:85%;font-weight:bold;line-

height:122%;margin:10px 0px;}

> #ygrp-mkp #ads{

> margin-bottom:10px;}

> #ygrp-mkp .ad{

> padding:0 0;}

> #ygrp-mkp .ad a{

> color:#0000ff;text-decoration:none;}

> -->

>

>

>

> <!--

>

> #ygrp-sponsor #ygrp-lc{

> font-family:Arial;}

> #ygrp-sponsor #ygrp-lc #hd{

> margin:10px 0px;font-weight:bold;font-size:78%;line-height:122%;}

> #ygrp-sponsor #ygrp-lc .ad{

> margin-bottom:10px;padding:0 0;}

> -->

>

>

>

> <!--

>

> #ygrp-mlmsg {font-size:13px;font-family:arial, helvetica, clean,

sans-serif;}

> #ygrp-mlmsg table {font-size:inherit;font:100%;}

> #ygrp-mlmsg select, input, textarea {font:99% arial, helvetica,

clean, sans-serif;}

> #ygrp-mlmsg pre, code {font:115% monospace;}

> #ygrp-mlmsg * {line-height:1.22em;}

> #ygrp-text{

> font-family:Georgia;

> }

> #ygrp-text p{

> margin:0 0 1em 0;}

> #ygrp-tpmsgs{

> font-family:Arial;

> clear:both;}

> #ygrp-vitnav{

> padding-top:10px;font-family:Verdana;font-size:77%;margin:0;}

> #ygrp-vitnav a{

> padding:0 1px;}

> #ygrp-actbar{

> clear:both;margin:25px 0;white-space:nowrap;color:#666;text-

align:right;}

> #ygrp-actbar .left{

> float:left;white-space:nowrap;}

> .bld{font-weight:bold;}

> #ygrp-grft{

> font-family:Verdana;font-size:77%;padding:15px 0;}

> #ygrp-ft{

> font-family:verdana;font-size:77%;border-top:1px solid #666;

> padding:5px 0;

> }

> #ygrp-mlmsg #logo{

> padding-bottom:10px;}

>

> #ygrp-vital{

> background-color:#e0ecee;margin-bottom:20px;padding:2px 0 8px 8px;}

> #ygrp-vital #vithd{

> font-size:77%;font-family:Verdana;font-weight:bold;color:#333;text-

transform:uppercase;}

> #ygrp-vital ul{

> padding:0;margin:2px 0;}

> #ygrp-vital ul li{

> list-style-type:none;clear:both;border:1px solid #e0ecee;

> }

> #ygrp-vital ul li .ct{

> font-weight:bold;color:#ff7900;float:right;width:2em;text-

align:right;padding-right:.5em;}

> #ygrp-vital ul li .cat{

> font-weight:bold;}

> #ygrp-vital a{

> text-decoration:none;}

>

> #ygrp-vital a:hover{

> text-decoration:underline;}

>

> #ygrp-sponsor #hd{

> color:#999;font-size:77%;}

> #ygrp-sponsor #ov{

> padding:6px 13px;background-color:#e0ecee;margin-bottom:20px;}

> #ygrp-sponsor #ov ul{

> padding:0 0 0 8px;margin:0;}

> #ygrp-sponsor #ov li{

> list-style-type:square;padding:6px 0;font-size:77%;}

> #ygrp-sponsor #ov li a{

> text-decoration:none;font-size:130%;}

> #ygrp-sponsor #nc{

> background-color:#eee;margin-bottom:20px;padding:0 8px;}

> #ygrp-sponsor .ad{

> padding:8px 0;}

> #ygrp-sponsor .ad #hd1{

> font-family:Arial;font-weight:bold;color:#628c2a;font-

size:100%;line-height:122%;}

> #ygrp-sponsor .ad a{

> text-decoration:none;}

> #ygrp-sponsor .ad a:hover{

> text-decoration:underline;}

> #ygrp-sponsor .ad p{

> margin:0;}

> o{font-size:0;}

> .MsoNormal{

> margin:0 0 0 0;}

> #ygrp-text tt{

> font-size:120%;}

> blockquote{margin:0 0 0 4px;}

> .replbq{margin:4;}

> -->

>

>

>

>

>

>

>

>

>

______________________________________________________________________

______________

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

[Guest guest]

hi, at least your heart is there. Zena wrote: I'm an East Saxon myself! I do 17th Century re-enacting, but I can't do so much now that I'm on the O2, I'm trying to find out if I can have an authentic costume with some sort of veil to hide the cannulas! Otherwise I'll just have to stay in the beer tent! That's a pity Love Ze > >> > ,> > Dropping to 77-78 is definitely NOT good. I often> > fall that low, but when it happens to me I'm usually> > on 15 liters of oxygen. It sounds like your life would> > definitely

improve if you used your 02. Also, don't> > forget the damage you do to the rest of your body> > when it's starved for air. Oxygen is your friend.> > Using it or accommodating your life to it is not> > "giving in", it is taking care of yourself in order to> > prolong your life. You're doing battle with a bully,> > and you have to try to stay ahead of it.> > > > You say you don't like your doc. Is he a pulmonologist?> > How were you diagnosed? You need to find a doctor> > that you like and trust, preferably at one of the larger> > teaching hospitals that has a department for> > interstitial lung diseases (like PF). Also, ask lots of> > questions (take a list with you to the doc) and keep> > records of your healthcare. You can't manage your> > disease, but you can manage your healthcare. Most> > of us could write

books about how that has been a> > full-time job for us since diagnosis, sorry to say.> > > > Progression is very individual. It can move slowly or> > quite rapidly. What often happens to people is that> > their disease will progress somewhat (e.g., they have> > less energy, cough & wheeze more, their sats drop> > farther and more often, etc.), then they'll plauteau> > out and stabilize. How long each plateau lasts is> > totally variable and even varies within the same> > person. I've been at end stage IPF for over a year,> > with high 02 flows, little energy, poor test results,> > etc. I've been waiting for new lungs since March 2007;> > however, I've never fainted, never been to the ER,> > still have a healthy heart, and am relatively stable.> > I still get out and go places away from home with> > friends and

family... not as often, but I still go.> > > > This disease has a way of sneaking up on us.> > Don't wait until you are in a panic situation to do> > something. You're better off to anticipate problems,> > do some research, prepare for changes in breathing> > and mobility, and make the lifestyle changes that you> > need in order to facilitate your life and keep active.> > Keep moving as long as you can, preferably at a> > Pulmonary Rehab program, which can improve exercise> > tolerance if started early enough. It sounds like you> > already have a pulse oximeter, which is also a must for> > most of us.> > > > I'm sorry you have to deal with PF along with emphysema,> > but this site is a great place with honest, caring people> > to help you learn how to LIVE with your disease. We'd> > love to hear more about

you. We usually close with our> > name, diagnosis (dx) date, and place of residence. Welcome.> > > > Hugs,> > Gwynne IPF 7/04 listed for transplant 3/07 Texas> >> > > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.>

Never miss a thing. Make Yahoo your homepage.