Re: 15 with pulmonary fibrosis

[Guest guest]

Run to, not from, the doctors. Yes, the shortness of breath is common

and indicates a need for oxygen.

While it is rare at your age to have pulmonary fibrosis, if you're going

to Duke you are seeing the best. I also do know a girl who had it young

and had a transplant over five years ago when she was 21.

What medications are you on? How were you diagnosed?

>

> so, i'm 17, and have pulmonary fibrosis.

> i was just diagnosed with it.

>

>

> appearently my doctor says it usually happens with people 50+ and more

> in men...so my case is extremely rare. i'm currently in somewhat

stable

> condition, on 4 different medications, and a inhaler..i'm also being

> studied at duke university..

>

> they've determined its a terminal disease, which is scary..and i was

> given a physciatrist..because he didnt know how i would handle it..but

> i'm alive and kickin, and everyday i wake up breathing is a fresh,

> good, new day!

>

> but i've had shortness of breath really bad recently, to a point where

> i about pass out, and my hands turn blue...but i dont wanna go to the

> doctors in fear something else is wrong.....

>

> have you experienced this?

>

[Guest guest]

There are not adequate words to express my sadness that you have PF at such a young age! Previously, 23 was the youngest I knew about...

I'm sure you are in close care w/your drs but it sounds like you may need to be on oxygen now. Most of us here have sob (shortness of breath) and are on O2.

Please don't hesitate to go to drs...they will help you move through whatever you go through.

If it is a need for oxygen then that is very important for your other organs as well.

I'm glad you found our board...it's the best place you can be. Lots of info. and good support. Questions nearly always have answers here.

Look at the Files section on the web page. Lots of info there.

What is your name and in what State do you live?

Welcome... I know it is scary to be told you have a terminal disease but we say here on the board there is no expiration stamped on our fannies. You aren't going to die in a week!

Hugs to you.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

15 with pulmonary fibrosis

so, i'm 17, and have pulmonary fibrosis.i was just diagnosed with it.appearently my doctor says it usually happens with people 50+ and more in men...so my case is extremely rare. i'm currently in somewhat stable condition, on 4 different medications, and a inhaler..i'm also being studied at duke university..they've determined its a terminal disease, which is scary..and i was given a physciatrist..because he didnt know how i would handle it..but i'm alive and kickin, and everyday i wake up breathing is a fresh, good, new day! :)but i've had shortness of breath really bad recently, to a point where i about pass out, and my hands turn blue...but i dont wanna go to the doctors in fear something else is wrong.....have you experienced this?

[Guest guest]

Sorry to hear that you have this terrible disease. I was also

diagnosed at a young age. I am 28 years old now and have 2 very young

kids. When I was first diagnosed I shyed away from the doctors

because I was scared. I know now that I shouldnt have done that. I am

fighting to get on the transplant list and I am only using 24% of my

lungs. If I would have gone to the dr. way back then I might have

already had the transplant.

What is your name ? Where do you live ?

Miranda

Los Angeles / 28yrs old

IPF '05

> >

> > so, i'm 17, and have pulmonary fibrosis.

> > i was just diagnosed with it.

> >

> >

> > appearently my doctor says it usually happens with people 50+ and

more

> > in men...so my case is extremely rare. i'm currently in somewhat

> stable

> > condition, on 4 different medications, and a inhaler..i'm also

being

> > studied at duke university..

> >

> > they've determined its a terminal disease, which is scary..and i

was

> > given a physciatrist..because he didnt know how i would handle

it..but

> > i'm alive and kickin, and everyday i wake up breathing is a fresh,

> > good, new day!

> >

> > but i've had shortness of breath really bad recently, to a point

where

> > i about pass out, and my hands turn blue...but i dont wanna go to

the

> > doctors in fear something else is wrong.....

> >

> > have you experienced this?

> >

>

[Guest guest]

I am sorry you had to find us, but you're where you need tobe. We understand. Totally. You will find love, support,empathy, kinship and knowledge here. Please keep us posted.jon50, sarcoidosis 1/09

-- Two wrongs don't make a right,but two 's make an airplane.

[Guest guest]

I am sorry you had to find us, but you're where you need tobe. We understand. Totally. You will find love, support,empathy, kinship and knowledge here. Please keep us posted.jon50, sarcoidosis 1/09

-- Two wrongs don't make a right,but two 's make an airplane.

[Guest guest]

livykiller,

Hi and welcome. What is your name? You're right when you say most of us here are much older then you though we've had a few in their 20's and early 30's. I'm sure that to you that sounds ancient also.

If you are having shortness of breath and are experiencing your hands turning blue you need to report this to your doctor. It's a symptom that you are not getting sufficient oxygen. Please don't hide symptoms from your doctor, it can only do you harm.

By the way are you 15 as it says in your subject line or are you 17?

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"May you never take one single breath for granted"

To: Breathe-Support Sent: Wednesday, February 11, 2009 1:05:50 PMSubject: 15 with pulmonary fibrosis

so, i'm 17, and have pulmonary fibrosis.i was just diagnosed with it.appearently my doctor says it usually happens with people 50+ and more in men...so my case is extremely rare. i'm currently in somewhat stable condition, on 4 different medications, and a inhaler..i'm also being studied at duke university..they've determined its a terminal disease, which is scary..and i was given a physciatrist. .because he didnt know how i would handle it..but i'm alive and kickin, and everyday i wake up breathing is a fresh, good, new day! :)but i've had shortness of breath really bad recently, to a point where i about pass out, and my hands turn blue...but i dont wanna go to the doctors in fear something else is wrong.....have you experienced this?

[Guest guest]

Hello, i'm 17. (old yahoo account when i had made one for myspace)

haha. I'm Bethany Olivia

I'm only on oxygen at night..but i think I need to start during the

day too.. Yeah, i'm at duke right now...I'm staying the night here,

because of dizzy spells i'm getting..i'm so far down on the

transplant list i dont think i'll ever make it to the top! they said

5 years minimum till they think i can get a donor..i'm so scared. I'm

actually begining to be scared because i'm in the pulmonary section

of the hospital and some of the kids here dont have a long time to

live...but nobody else in the pediatrics has pulmonary fibrosis..

>

> livykiller,

> Hi and welcome. What is your name?  You're right when you say most

of us here are much older then you though we've had a few in their

20's and early 30's. I'm sure that to you that sounds ancient also.

> If you are having shortness of breath and are experiencing your

hands turning blue you need to report this to your doctor. It's a

symptom that you are not getting sufficient oxygen. Please don't hide

symptoms from your doctor, it can only do you harm.

> By the way are you 15 as it says in your subject line or are you 17?

>  

> Beth in North Carolina

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>  

> " May you never take one single breath for granted "

>

>

>

>

> ________________________________

> From: livykiller

> To: Breathe-Support

> Sent: Wednesday, February 11, 2009 1:05:50 PM

> Subject: 15 with pulmonary fibrosis

>

>

> so, i'm 17, and have pulmonary fibrosis.

> i was just diagnosed with it.

>

> appearently my doctor says it usually happens with people 50+ and

more

> in men...so my case is extremely rare. i'm currently in somewhat

stable

> condition, on 4 different medications, and a inhaler..i'm also

being

> studied at duke university..

>

> they've determined its a terminal disease, which is scary..and i

was

> given a physciatrist. .because he didnt know how i would handle

it..but

> i'm alive and kickin, and everyday i wake up breathing is a fresh,

> good, new day!

>

> but i've had shortness of breath really bad recently, to a point

where

> i about pass out, and my hands turn blue...but i dont wanna go to

the

> doctors in fear something else is wrong.....

>

> have you experienced this?

>

[Guest guest]

Calcium Channel Blockers, Corticosteroids, Lasix, and muran.

It was one day it all came on, i couldnt walk up stairs without

breathing so hard, i thought my lungs would pop. And of course, my

family thought I was being way over dramatic, and sort of ignored it.

So, I kind of ignored it and i went on for about 2 weeks. Thats when

I was simply walking to a friends house and I just dropped. The

neighbor found me laying on the ground, my lips blue, and called 911.

At first, they believed i suffered a stroke. Then they thought I have

heart problems and did a whole bunch a tests on my heart. Then when

they didnt see anything wrong, they thought my lungs were leaking

oxygen and when I got a X-ray and a MRI, all their jaws literly

dropped. I remembered hearing a doctor saying " I sure didnt see that

coming.. " and I was admitted to the hospital. They told my parents I

was getting put onto a transplant list, and that if I didnt get a

donor within about 8 years, they said to take me and do everything i

ever wanted to do in life.

> >

> > so, i'm 17, and have pulmonary fibrosis.

> > i was just diagnosed with it.

> >

> >

> > appearently my doctor says it usually happens with people 50+ and

more

> > in men...so my case is extremely rare. i'm currently in somewhat

> stable

> > condition, on 4 different medications, and a inhaler..i'm also

being

> > studied at duke university..

> >

> > they've determined its a terminal disease, which is scary..and i

was

> > given a physciatrist..because he didnt know how i would handle

it..but

> > i'm alive and kickin, and everyday i wake up breathing is a fresh,

> > good, new day!

> >

> > but i've had shortness of breath really bad recently, to a point

where

> > i about pass out, and my hands turn blue...but i dont wanna go to

the

> > doctors in fear something else is wrong.....

> >

> > have you experienced this?

> >

>

[Guest guest]

I'm so sorry, that is horrible..

I was just automatically put on a transplant list because i'm in the

pediatric unit i think..I have been on for a year now, and no luck.

Its horrible hoping someone might die so you wont have to . But i'm

doing everything in life I want to just in case..

i'm Bethany Olivia, and i'm from Fall River, Massachusetts.

> > >

> > > so, i'm 17, and have pulmonary fibrosis.

> > > i was just diagnosed with it.

> > >

> > >

> > > appearently my doctor says it usually happens with people 50+

and

> more

> > > in men...so my case is extremely rare. i'm currently in somewhat

> > stable

> > > condition, on 4 different medications, and a inhaler..i'm also

> being

> > > studied at duke university..

> > >

> > > they've determined its a terminal disease, which is scary..and

i

> was

> > > given a physciatrist..because he didnt know how i would handle

> it..but

> > > i'm alive and kickin, and everyday i wake up breathing is a

fresh,

> > > good, new day!

> > >

> > > but i've had shortness of breath really bad recently, to a

point

> where

> > > i about pass out, and my hands turn blue...but i dont wanna go

to

> the

> > > doctors in fear something else is wrong.....

> > >

> > > have you experienced this?

> > >

> >

>

[Guest guest]

Bethany,

I'm so sorry that you are going through this. You are definitely in the right place. I live in Durham about 10 minutes from Duke so I know what a wonderful facility it is. Do you live in the area?

Try not to be too worried about the transplant process. It really is more dependent on how ill you are than anything else. You could zoom ahead of someone else who's been on the list longer if your condition was more critical. Obviously there's more to it than just that, they have to find the right match for you and all but one step at a time.

Right now just concentrate on getting things stablized and helping them figure out when you need to be using the oxygen and how much. I've been on oxygen full time for over 2 and a half years and I still go and do many things I was doing before.

I can only imagine how frightening this is for you. Are your parents with you? Please depend on the people around you for the support you need. We're here for you whenever you need us!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"May you never take one single breath for granted"

To: Breathe-Support Sent: Wednesday, February 11, 2009 4:13:31 PMSubject: Re: 15 with pulmonary fibrosis

Hello, i'm 17. (old yahoo account when i had made one for myspace) haha. I'm Bethany Olivia I'm only on oxygen at night..but i think I need to start during the day too.. Yeah, i'm at duke right now...I'm staying the night here, because of dizzy spells i'm getting..i'm so far down on the transplant list i dont think i'll ever make it to the top! they said 5 years minimum till they think i can get a donor..i'm so scared. I'm actually begining to be scared because i'm in the pulmonary section of the hospital and some of the kids here dont have a long time to live...but nobody else in the pediatrics has pulmonary fibrosis..>> livykiller,> Hi and welcome. What is your

name? You're right when you say most of us here are much older then you though we've had a few in their 20's and early 30's. I'm sure that to you that sounds ancient also. > If you are having shortness of breath and are experiencing your hands turning blue you need to report this to your doctor. It's a symptom that you are not getting sufficient oxygen. Please don't hide symptoms from your doctor, it can only do you harm.> By the way are you 15 as it says in your subject line or are you 17?> > Beth in North Carolina> Moderator> Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > "May you never take one single breath for granted"> > > > > ____________ _________ _________ __> From: livykiller <livykiller@ ...>> To: Breathe-Support@ yahoogroups. com> Sent: Wednesday, February 11, 2009 1:05:50 PM> Subject: 15 with pulmonary fibrosis> > > so, i'm 17, and have pulmonary fibrosis.> i was just diagnosed with it.> > appearently my doctor says it usually happens with people 50+ and more > in men...so my case is extremely rare. i'm currently in somewhat stable > condition, on 4 different medications, and a inhaler..i'm also being > studied at duke university..> > they've determined its a terminal disease, which is scary..and i was > given a physciatrist. .because he didnt know how i would handle it..but > i'm alive and kickin, and everyday i wake up breathing is a fresh, > good, new day! > > but i've had shortness of breath really bad recently, to a point

where > i about pass out, and my hands turn blue...but i dont wanna go to the > doctors in fear something else is wrong.....> > have you experienced this?>

[Guest guest]

kinda! charlotte, but were staying at my famlies who live in durham

so we can have access to the hospital easier.

its so scary. and i know how selfish it sounded for asking to be put

ahead of people, but it's not what i really want. i just dont want to

die..and my mother is. she stays with me 24/7 and is probably the

strongest person i know..she has addisons, so she also sees the

endocrinologist here every now and then..

but for the most part, she does everything in her power to make me

not think about this. and it is sort of annoying having to ask the

doctors for a pass to leave the hospital for a little while, but when

we do we have so much fun. she promised me one day we can go to

california. (i've ALWAYS wanted to go there!)

> >

> > livykiller,

> > Hi and welcome. What is your name?  You're right when you say

most

> of us here are much older then you though we've had a few in their

> 20's and early 30's. I'm sure that to you that sounds ancient also.

> > If you are having shortness of breath and are experiencing your

> hands turning blue you need to report this to your doctor. It's a

> symptom that you are not getting sufficient oxygen. Please don't

hide

> symptoms from your doctor, it can only do you harm.

> > By the way are you 15 as it says in your subject line or are you

17?

> >  

> > Beth in North Carolina

> > Moderator

> > Fibrotic NSIP 06/06 Dermatomyositi s 11/08

> >  

> > " May you never take one single breath for granted "

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: livykiller

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Wednesday, February 11, 2009 1:05:50 PM

> > Subject: 15 with pulmonary fibrosis

> >

> >

> > so, i'm 17, and have pulmonary fibrosis.

> > i was just diagnosed with it.

> >

> > appearently my doctor says it usually happens with people 50+ and

> more

> > in men...so my case is extremely rare. i'm currently in somewhat

> stable

> > condition, on 4 different medications, and a inhaler..i'm also

> being

> > studied at duke university..

> >

> > they've determined its a terminal disease, which is scary..and i

> was

> > given a physciatrist. .because he didnt know how i would handle

> it..but

> > i'm alive and kickin, and everyday i wake up breathing is a

fresh,

> > good, new day!

> >

> > but i've had shortness of breath really bad recently, to a point

> where

> > i about pass out, and my hands turn blue...but i dont wanna go to

> the

> > doctors in fear something else is wrong.....

> >

> > have you experienced this?

> >

>

[Guest guest]

Bethany,

You're not selfish at all... you just want to live! We all do.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"May you never take one single breath for granted"

To: Breathe-Support Sent: Wednesday, February 11, 2009 4:56:04 PMSubject: Re: 15 with pulmonary fibrosis

kinda! charlotte, but were staying at my famlies who live in durham so we can have access to the hospital easier.its so scary. and i know how selfish it sounded for asking to be put ahead of people, but it's not what i really want. i just dont want to die..and my mother is. she stays with me 24/7 and is probably the strongest person i know..she has addisons, so she also sees the endocrinologist here every now and then..but for the most part, she does everything in her power to make me not think about this. and it is sort of annoying having to ask the doctors for a pass to leave the hospital for a little while, but when we do we have so much fun. she promised me one day we can go to california. (i've ALWAYS wanted to go there!)> >> > livykiller,> > Hi and welcome. What is your name? You're right when you say most > of us here are much older then you though we've had a few in their > 20's and early 30's. I'm sure that

to you that sounds ancient also. > > If you are having shortness of breath and are experiencing your > hands turning blue you need to report this to your doctor. It's a > symptom that you are not getting sufficient oxygen. Please don't hide > symptoms from your doctor, it can only do you harm.> > By the way are you 15 as it says in your subject line or are you 17?> > > > Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > > "May you never take one single breath for granted"> > > > > > > > > > ____________ _________ _________ __> > From: livykiller <livykiller@ ...>> > To: Breathe-Support@ yahoogroups. com> > Sent: Wednesday, February 11, 2009 1:05:50 PM> > Subject: 15 with

pulmonary fibrosis> > > > > > so, i'm 17, and have pulmonary fibrosis.> > i was just diagnosed with it.> > > > appearently my doctor says it usually happens with people 50+ and > more > > in men...so my case is extremely rare. i'm currently in somewhat > stable > > condition, on 4 different medications, and a inhaler..i'm also > being > > studied at duke university..> > > > they've determined its a terminal disease, which is scary..and i > was > > given a physciatrist. .because he didnt know how i would handle > it..but > > i'm alive and kickin, and everyday i wake up breathing is a fresh, > > good, new day! > > > > but i've had shortness of breath really bad recently, to a point > where > > i about pass out, and my hands turn blue...but i

dont wanna go to > the > > doctors in fear something else is wrong.....> > > > have you experienced this?> >>

[Guest guest]

yeah..

do you have pulmonary fibrosis?

let me know if you ever stop by duke okay?

> > >

> > > livykiller,

> > > Hi and welcome. What is your name?  You're right when you say

> most

> > of us here are much older then you though we've had a few in

their

> > 20's and early 30's. I'm sure that to you that sounds ancient

also.

> > > If you are having shortness of breath and are experiencing your

> > hands turning blue you need to report this to your doctor. It's a

> > symptom that you are not getting sufficient oxygen. Please don't

> hide

> > symptoms from your doctor, it can only do you harm.

> > > By the way are you 15 as it says in your subject line or are

you

> 17?

> > >  

> > > Beth in North Carolina

> > > Moderator

> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08

> > >  

> > > " May you never take one single breath for granted "

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ __

> > > From: livykiller

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

> > > Sent: Wednesday, February 11, 2009 1:05:50 PM

> > > Subject: 15 with pulmonary fibrosis

> > >

> > >

> > > so, i'm 17, and have pulmonary fibrosis.

> > > i was just diagnosed with it.

> > >

> > > appearently my doctor says it usually happens with people 50+

and

> > more

> > > in men...so my case is extremely rare. i'm currently in

somewhat

> > stable

> > > condition, on 4 different medications, and a inhaler..i'm also

> > being

> > > studied at duke university..

> > >

> > > they've determined its a terminal disease, which is scary..and

i

> > was

> > > given a physciatrist. .because he didnt know how i would handle

> > it..but

> > > i'm alive and kickin, and everyday i wake up breathing is a

> fresh,

> > > good, new day!

> > >

> > > but i've had shortness of breath really bad recently, to a

point

> > where

> > > i about pass out, and my hands turn blue...but i dont wanna go

to

> > the

> > > doctors in fear something else is wrong.....

> > >

> > > have you experienced this?

> > >

> >

>

[Guest guest]

Bethany,

I do have pulmonary fibrosis. I was diagnosed in June of 2006 with fibrotic NSIP which causes pulmonary fibrosis (scarring in the lungs). I've lost about 55-60% of my lung function and am on oxygen 24/7.

I'm about 10 minutes from Duke so if you want a visitor, just yell really loud and I'll hear you!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"May you never take one single breath for granted"

To: Breathe-Support Sent: Wednesday, February 11, 2009 5:13:09 PMSubject: Re: 15 with pulmonary fibrosis

yeah..do you have pulmonary fibrosis?let me know if you ever stop by duke okay? > >

>> > > livykiller,> > > Hi and welcome. What is your name? You're right when you say > most > > of us here are much older then you though we've had a few in their > > 20's and early 30's. I'm sure that to you that sounds ancient also. > > > If you are having shortness of breath and are experiencing your > > hands turning blue you need to report this to your doctor. It's a > > symptom that you are not getting sufficient oxygen. Please don't > hide > > symptoms from your doctor, it can only do you harm.> > > By the way are you 15 as it says in your subject line or are you > 17?> > > > > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > > > > "May you never take one single

breath for granted"> > > > > > > > > > > > > > > ____________ _________ _________ __> > > From: livykiller <livykiller@ ...>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Wednesday, February 11, 2009 1:05:50 PM> > > Subject: 15 with pulmonary fibrosis> > > > > > > > > so, i'm 17, and have pulmonary fibrosis.> > > i was just diagnosed with it.> > > > > > appearently my doctor says it usually happens with people 50+ and > > more > > > in men...so my case is extremely rare. i'm currently in somewhat > > stable > > > condition, on 4 different medications, and a inhaler..i'm also > > being > > > studied at duke university..> > > > > >

they've determined its a terminal disease, which is scary..and i > > was > > > given a physciatrist. .because he didnt know how i would handle > > it..but > > > i'm alive and kickin, and everyday i wake up breathing is a > fresh, > > > good, new day! > > > > > > but i've had shortness of breath really bad recently, to a point > > where > > > i about pass out, and my hands turn blue...but i dont wanna go to > > the > > > doctors in fear something else is wrong.....> > > > > > have you experienced this?> > >> >>

[Guest guest]

Bethany

I don't know if they use the same pulmonologists in your unit as in the

others. Who is your pulmonologist? Beth may be quite familiar with

him.

> > > >

> > > > livykiller,

> > > > Hi and welcome. What is your name? You're right when you say

> > most

> > > of us here are much older then you though we've had a few in

> their

> > > 20's and early 30's. I'm sure that to you that sounds ancient

> also.

> > > > If you are having shortness of breath and are experiencing your

> > > hands turning blue you need to report this to your doctor. It's a

> > > symptom that you are not getting sufficient oxygen. Please don't

> > hide

> > > symptoms from your doctor, it can only do you harm.

> > > > By the way are you 15 as it says in your subject line or are

> you

> > 17?

> > > >

> > > > Beth in North Carolina

> > > > Moderator

> > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08

> > > >

> > > > " May you never take one single breath for granted "

> > > >

> > > >

> > > >

> > > >

> > > > ____________ _________ _________ __

> > > > From: livykiller

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

> > > > Sent: Wednesday, February 11, 2009 1:05:50 PM

> > > > Subject: 15 with pulmonary fibrosis

> > > >

> > > >

> > > > so, i'm 17, and have pulmonary fibrosis.

> > > > i was just diagnosed with it.

> > > >

> > > > appearently my doctor says it usually happens with people 50+

> and

> > > more

> > > > in men...so my case is extremely rare. i'm currently in

> somewhat

> > > stable

> > > > condition, on 4 different medications, and a inhaler..i'm also

> > > being

> > > > studied at duke university..

> > > >

> > > > they've determined its a terminal disease, which is scary..and

> i

> > > was

> > > > given a physciatrist. .because he didnt know how i would handle

> > > it..but

> > > > i'm alive and kickin, and everyday i wake up breathing is a

> > fresh,

> > > > good, new day!

> > > >

> > > > but i've had shortness of breath really bad recently, to a

> point

> > > where

> > > > i about pass out, and my hands turn blue...but i dont wanna go

> to

> > > the

> > > > doctors in fear something else is wrong.....

> > > >

> > > > have you experienced this?

> > > >

> > >

> >

>

[Guest guest]

Mostly, I see Dr. Voynow.

I see a couple of others too sometimes..

> > > > >

> > > > > livykiller,

> > > > > Hi and welcome. What is your name? You're right when you

say

> > > most

> > > > of us here are much older then you though we've had a few in

> > their

> > > > 20's and early 30's. I'm sure that to you that sounds ancient

> > also.

> > > > > If you are having shortness of breath and are experiencing

your

> > > > hands turning blue you need to report this to your doctor.

It's a

> > > > symptom that you are not getting sufficient oxygen. Please

don't

> > > hide

> > > > symptoms from your doctor, it can only do you harm.

> > > > > By the way are you 15 as it says in your subject line or are

> > you

> > > 17?

> > > > >

> > > > > Beth in North Carolina

> > > > > Moderator

> > > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08

> > > > >

> > > > > " May you never take one single breath for granted "

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > ____________ _________ _________ __

> > > > > From: livykiller

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

> > > > > Sent: Wednesday, February 11, 2009 1:05:50 PM

> > > > > Subject: 15 with pulmonary fibrosis

> > > > >

> > > > >

> > > > > so, i'm 17, and have pulmonary fibrosis.

> > > > > i was just diagnosed with it.

> > > > >

> > > > > appearently my doctor says it usually happens with people

50+

> > and

> > > > more

> > > > > in men...so my case is extremely rare. i'm currently in

> > somewhat

> > > > stable

> > > > > condition, on 4 different medications, and a inhaler..i'm

also

> > > > being

> > > > > studied at duke university..

> > > > >

> > > > > they've determined its a terminal disease, which is

scary..and

> > i

> > > > was

> > > > > given a physciatrist. .because he didnt know how i would

handle

> > > > it..but

> > > > > i'm alive and kickin, and everyday i wake up breathing is a

> > > fresh,

> > > > > good, new day!

> > > > >

> > > > > but i've had shortness of breath really bad recently, to a

> > point

> > > > where

> > > > > i about pass out, and my hands turn blue...but i dont wanna

go

> > to

> > > > the

> > > > > doctors in fear something else is wrong.....

> > > > >

> > > > > have you experienced this?

> > > > >

> > > >

> > >

> >

>

[Guest guest]

okay, will do!

i'm in the pediatric center, i see dr. voynow..

> > > >

> > > > livykiller,

> > > > Hi and welcome. What is your name?  You're right when you say

> > most

> > > of us here are much older then you though we've had a few in

> their

> > > 20's and early 30's. I'm sure that to you that sounds ancient

> also.

> > > > If you are having shortness of breath and are experiencing

your

> > > hands turning blue you need to report this to your doctor. It's

a

> > > symptom that you are not getting sufficient oxygen. Please

don't

> > hide

> > > symptoms from your doctor, it can only do you harm.

> > > > By the way are you 15 as it says in your subject line or are

> you

> > 17?

> > > >  

> > > > Beth in North Carolina

> > > > Moderator

> > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08

> > > >  

> > > > " May you never take one single breath for granted "

> > > >

> > > >

> > > >

> > > >

> > > > ____________ _________ _________ __

> > > > From: livykiller

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

> > > > Sent: Wednesday, February 11, 2009 1:05:50 PM

> > > > Subject: 15 with pulmonary fibrosis

> > > >

> > > >

> > > > so, i'm 17, and have pulmonary fibrosis.

> > > > i was just diagnosed with it.

> > > >

> > > > appearently my doctor says it usually happens with people 50+

> and

> > > more

> > > > in men...so my case is extremely rare. i'm currently in

> somewhat

> > > stable

> > > > condition, on 4 different medications, and a inhaler..i'm

also

> > > being

> > > > studied at duke university..

> > > >

> > > > they've determined its a terminal disease, which is

scary..and

> i

> > > was

> > > > given a physciatrist. .because he didnt know how i would

handle

> > > it..but

> > > > i'm alive and kickin, and everyday i wake up breathing is a

> > fresh,

> > > > good, new day!

> > > >

> > > > but i've had shortness of breath really bad recently, to a

> point

> > > where

> > > > i about pass out, and my hands turn blue...but i dont wanna

go

> to

> > > the

> > > > doctors in fear something else is wrong.....

> > > >

> > > > have you experienced this?

> > > >

> > >

> >

>

[Guest guest]

Wow, you are indeed so very young to have pulmonary fibrosis.

While I probably seem like an old lady to you, I'm also pretty young for the PF world. I was diagnosed with PF at 33 years old.

I know it's not easy being sick at any age, but I think there are issues associated with being ill at a young age that are different too. I have a genetic disorder called Hermansky-Pudlak Syndrome that causes my PF. It is a type of albinism. While our average age of onset is in the 30s, we have had some in their late teens and early 20s.

I know when I was diagnosed it was hard because my life was suddenly so different from the people around me. They were getting married, having babies, building their careers and buying their first houses. I was trying to figure out how to fight this monster.

Often younger peers just don't get being sick because they've never really been sick. I've lost a lot of friends in recent years who just can't cope with me or can't be understanding of my needs.

This is a great group for resoruces.

Hang in there - just curious - do they think they know why you have developed PF at such an early age?

I know you're not a kid, but there is a pediatric group for PF in kids. Some kids get it from genetic disorders and others from long-term cancer therapies etc. Wonder if they'd be any help for your parents.

Hermansky-Pudlak Syndrome albinism 02/PF 06

>> so, i'm 17, and have pulmonary fibrosis.> i was just diagnosed with it.> > > appearently my doctor says it usually happens with people 50+ and more > in men...so my case is extremely rare. i'm currently in somewhat stable > condition, on 4 different medications, and a inhaler..i'm also being > studied at duke university..> > they've determined its a terminal disease, which is scary..and i was > given a physciatrist..because he didnt know how i would handle it..but > i'm alive and kickin, and everyday i wake up breathing is a fresh, > good, new day! > > but i've had shortness of breath really bad recently, to a point where > i about pass out, and my hands turn blue...but i dont wanna go to the > doctors in fear something else is wrong.....> > have you experienced this?>

[Guest guest]

You're not selfish at all!!!! And I love to hear that you're making plans for California - you know there was a study several years ago of people who were older than 100 years old. Do you know what they all had in common? They all had long-term plans - even at 100 years old!

When I was first diagnosed I found it scary to make long term plans. I was afraid I'd be disappointed - now I make it a point.

You go!

Hermansky-Pudlak Syndrome 02 / PF 06

> > >> > > livykiller,> > > Hi and welcome. What is your name? You're right when you say > most > > of us here are much older then you though we've had a few in their > > 20's and early 30's. I'm sure that to you that sounds ancient also. > > > If you are having shortness of breath and are experiencing your > > hands turning blue you need to report this to your doctor. It's a > > symptom that you are not getting sufficient oxygen. Please don't > hide > > symptoms from your doctor, it can only do you harm.> > > By the way are you 15 as it says in your subject line or are you > 17?> > > > > > Beth in North Carolina> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > > > > "May you never take one single breath for granted"> > > > > > > > > > > > > > > ____________ _________ _________ __> > > From: livykiller <livykiller@ ...>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Wednesday, February 11, 2009 1:05:50 PM> > > Subject: 15 with pulmonary fibrosis> > > > > > > > > so, i'm 17, and have pulmonary fibrosis.> > > i was just diagnosed with it.> > > > > > appearently my doctor says it usually happens with people 50+ and > > more > > > in men...so my case is extremely rare. i'm currently in somewhat > > stable > > > condition, on 4 different medications, and a inhaler..i'm also > > being > > > studied at duke university..> > > > > > they've determined its a terminal disease, which is scary..and i > > was > > > given a physciatrist. .because he didnt know how i would handle > > it..but > > > i'm alive and kickin, and everyday i wake up breathing is a > fresh, > > > good, new day! > > > > > > but i've had shortness of breath really bad recently, to a point > > where > > > i about pass out, and my hands turn blue...but i dont wanna go to > > the > > > doctors in fear something else is wrong.....> > > > > > have you experienced this?> > >> >>

[Guest guest]

Bethany,

Just jumping in here. First of all I am so sorry you have this disease. Most of us on the board are grandparents ( or old enough to be grandparents) and it is heartbreaking when someone so young has to deal with the same issues we are dealing with. The good news is we "get it" and this site has lots of caring souls, and lots of good advice. There are even a lot of former teachers so if you need help with school work or an editor for your English papers let me know:)

Second I live in California, close to Disneyland, Legoland, Knotts and THE BEACH!!!! If you decide to come with your mom I have an extra room and free Legoland tickets ( so sorry but I have no Disneyland connection!). Take care of yourself Bethany. I am keeping you in my prayers- R. (52) Sarcoid/PF 3/2006 Carlsbad, California

Subject: Re: 15 with pulmonary fibrosisTo: Breathe-Support Date: Wednesday, February 11, 2009, 1:56 PM

kinda! charlotte, but were staying at my famlies who live in durham so we can have access to the hospital easier.its so scary. and i know how selfish it sounded for asking to be put ahead of people, but it's not what i really want. i just dont want to die..and my mother is. she stays with me 24/7 and is probably the strongest person i know..she has addisons, so she also sees the endocrinologist here every now and then..but for the most part, she does everything in her power to make me not think about this. and it is sort of annoying having to ask the doctors for a pass to leave the hospital for a little while, but when we do we have so much fun. she promised me one day we can go to california. (i've ALWAYS wanted to go there!)> >> > livykiller,> > Hi and welcome. What is your name? You're right when you say most > of us here are much older then you though we've had a few in their > 20's and early 30's. I'm sure that to you that sounds ancient also. > > If you are having shortness of breath and

are experiencing your > hands turning blue you need to report this to your doctor. It's a > symptom that you are not getting sufficient oxygen. Please don't hide > symptoms from your doctor, it can only do you harm.> > By the way are you 15 as it says in your subject line or are you 17?> > > > Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > > "May you never take one single breath for granted"> > > > > > > > > > ____________ _________ _________ __> > From: livykiller <livykiller@ ...>> > To: Breathe-Support@ yahoogroups. com> > Sent: Wednesday, February 11, 2009 1:05:50 PM> > Subject: 15 with pulmonary fibrosis> > > > > > so, i'm 17, and have pulmonary

fibrosis.> > i was just diagnosed with it.> > > > appearently my doctor says it usually happens with people 50+ and > more > > in men...so my case is extremely rare. i'm currently in somewhat > stable > > condition, on 4 different medications, and a inhaler..i'm also > being > > studied at duke university..> > > > they've determined its a terminal disease, which is scary..and i > was > > given a physciatrist. .because he didnt know how i would handle > it..but > > i'm alive and kickin, and everyday i wake up breathing is a fresh, > > good, new day! > > > > but i've had shortness of breath really bad recently, to a point > where > > i about pass out, and my hands turn blue...but i dont wanna go to > the > > doctors in fear something else is

wrong.....> > > > have you experienced this?> >>

[Guest guest]

Bethany

so sorry you need us, but glad you found us, welcome

I was listed for a single lung transplant last week, yes, it is very scary

my diagnosis was March 2006

there were syptoms, especially shortness of breath - SOB - for many years

just thought I was out of shape or heart issues

Went to ER twice for SOB, ruled out heart disease, maybe bronchitis, asthma???

my cardioligist met me at second ER, referred me to pulmonary doc

after 3 visits with pulmonary doc, the diagnosis was made

pulmonary doc couldn't treat my disease, so he suggested going to teaching hospitals with departments that specialize in this disease

glad you go to Duke, it has a wonderful reputation

used to use O2 for exertion, gradually increased to 24/7

I live near Philadelphia PA, and go to the University of Pennsylvania for pulmonary doc and transplant doc

not far from Sesame Place, but you might be too old for that

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: Re: 15 with pulmonary fibrosisTo: Breathe-Support Date: Wednesday, February 11, 2009, 5:43 PM

okay, will do!i'm in the pediatric center, i see dr. voynow..> > > >> > > > livykiller,> > > > Hi and welcome. What is your name? You're right when you say > > most > > > of us here are much older then you though we've had a few in > their > > > 20's and early 30's. I'm sure that to you that sounds ancient > also. > > > > If you are having shortness of

breath and are experiencing your > > > hands turning blue you need to report this to your doctor. It's a > > > symptom that you are not getting sufficient oxygen. Please don't > > hide > > > symptoms from your doctor, it can only do you harm.> > > > By the way are you 15 as it says in your subject line or are > you > > 17?> > > > > > > > Beth in North Carolina> > > > Moderator> > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > > > > > > "May you never take one single breath for granted"> > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __> > > > From: livykiller <livykiller@ ...>> > > > To:

Breathe-Support@ yahoogroups. com> > > > Sent: Wednesday, February 11, 2009 1:05:50 PM> > > > Subject: 15 with pulmonary fibrosis> > > > > > > > > > > > so, i'm 17, and have pulmonary fibrosis.> > > > i was just diagnosed with it.> > > > > > > > appearently my doctor says it usually happens with people 50+ > and > > > more > > > > in men...so my case is extremely rare. i'm currently in > somewhat > > > stable > > > > condition, on 4 different medications, and a inhaler..i'm also > > > being > > > > studied at duke university..> > > > > > > > they've determined its a terminal disease, which is scary..and > i > > > was > > > > given a

physciatrist. .because he didnt know how i would handle > > > it..but > > > > i'm alive and kickin, and everyday i wake up breathing is a > > fresh, > > > > good, new day! > > > > > > > > but i've had shortness of breath really bad recently, to a > point > > > where > > > > i about pass out, and my hands turn blue...but i dont wanna go > to > > > the > > > > doctors in fear something else is wrong.....> > > > > > > > have you experienced this?> > > >> > >> >>

[Guest guest]

Bethany,

I don't know Dr.Voynow, but she specializes in pediatric pulmonology so being 49 I wouldn't know her. lol Seriously though, I'm confident that you are in the best hands you can possibly be. Feel free to email me at mbmurtha@... if you need to for any reason. I know you mentioned you are staying overnight at Duke tonight. Are you headed back to Charlotte tomorrow? Please stay in touch and let me know if I can help you in any way.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"May you never take one single breath for granted"

To: Breathe-Support Sent: Wednesday, February 11, 2009 5:43:46 PMSubject: Re: 15 with pulmonary fibrosis

okay, will do!i'm in the pediatric center, i see dr. voynow..> > > >> > > > livykiller,> > > > Hi and welcome. What is your name? You're right when you say > > most > > > of us here are much older then you though we've had a few in > their > > > 20's and early 30's. I'm sure that to you that

sounds ancient > also. > > > > If you are having shortness of breath and are experiencing your > > > hands turning blue you need to report this to your doctor. It's a > > > symptom that you are not getting sufficient oxygen. Please don't > > hide > > > symptoms from your doctor, it can only do you harm.> > > > By the way are you 15 as it says in your subject line or are > you > > 17?> > > > > > > > Beth in North Carolina> > > > Moderator> > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > > > > > > "May you never take one single breath for granted"> > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __> > >

> From: livykiller <livykiller@ ...>> > > > To: Breathe-Support@ yahoogroups. com> > > > Sent: Wednesday, February 11, 2009 1:05:50 PM> > > > Subject: 15 with pulmonary fibrosis> > > > > > > > > > > > so, i'm 17, and have pulmonary fibrosis.> > > > i was just diagnosed with it.> > > > > > > > appearently my doctor says it usually happens with people 50+ > and > > > more > > > > in men...so my case is extremely rare. i'm currently in > somewhat > > > stable > > > > condition, on 4 different medications, and a inhaler..i'm also > > > being > > > > studied at duke university..> > > > > > > > they've determined its a terminal disease, which is

scary..and > i > > > was > > > > given a physciatrist. .because he didnt know how i would handle > > > it..but > > > > i'm alive and kickin, and everyday i wake up breathing is a > > fresh, > > > > good, new day! > > > > > > > > but i've had shortness of breath really bad recently, to a > point > > > where > > > > i about pass out, and my hands turn blue...but i dont wanna go > to > > > the > > > > doctors in fear something else is wrong.....> > > > > > > > have you experienced this?> > > >> > >> >>

[Guest guest]

Bethany,

I'm sorry to hear about your situation, but it is not as bleak as it

may seem. I see that you said you are from Fall River, MA...I used

to live in Melrose, MA and now live up in New Hampshire. I have just

completed the pre-transplant evaluation process at Brigham and

Women's Hospital in Boston. They have a wonderful Lung Transplant

Program and it might be worth considering to contact them and see

about getting listed there as well. You are allowed to be listed in

multiple places and it could help increase your chances, or allow you

to be back home in Fall River. I have been going to them for almost a

year now. They have a wonderful support group that meets once a

month. It's so nice to be able to talk to other people with the same

disease...people that are waiting for transplant and people who have

already had transplants. At our January meeting there was a young

girl around 13 or 14, who had a transplant less than a year ago - you

couldn't tell that anything had ever been wrong with her!!!

I was diagnosed with Pulmonary Fibrosis in September of 2007. I have

been on oxygen since January 2008 and although I was very self-

concious at first, I quickly got over it. I have found that if

anything, the tank and tubes make other people more helpful and

understanding. Truth be told, I have totally gotten over worrying

about it - besides, without it I wouldn't be able to go out of the

house!! In December, my wife and daughter and I all went to Disney

World. Everyone there was extremely nice!!!

If you would like contact information for the program at Brigham and

Women's let me know. You can also check them out at

http://www.chestsurg.org/treatment/lung-transplant/ Also, please

feel free to ask any questions you want here...everyone on this group

is wonderful!! It really is a caring and supportive community...a

family, if you will!!!!!

Steve aka...Knip IPF 9/07 confirmed via VATS 12/08

57 New Hampshire

> > > >

> > > > so, i'm 17, and have pulmonary fibrosis.

> > > > i was just diagnosed with it.

> > > >

> > > >

> > > > appearently my doctor says it usually happens with people 50+

> and

> > more

> > > > in men...so my case is extremely rare. i'm currently in

somewhat

> > > stable

> > > > condition, on 4 different medications, and a inhaler..i'm

also

> > being

> > > > studied at duke university..

> > > >

> > > > they've determined its a terminal disease, which is

scary..and

> i

> > was

> > > > given a physciatrist..because he didnt know how i would

handle

> > it..but

> > > > i'm alive and kickin, and everyday i wake up breathing is a

> fresh,

> > > > good, new day!

> > > >

> > > > but i've had shortness of breath really bad recently, to a

> point

> > where

> > > > i about pass out, and my hands turn blue...but i dont wanna

go

> to

> > the

> > > > doctors in fear something else is wrong.....

> > > >

> > > > have you experienced this?

> > > >

> > >

> >

>

[Guest guest]

PinkJ....I notice here that we were dx the same time...March, 2006...

Me too, I thought the sob, coughing, couldn't climb stairs and so on was just out of shape and overweight.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

15 with pulmonary fibrosis> > > > > > > > > > > > so, i'm 17, and have pulmonary fibrosis.> > > > i was just diagnosed with it.> > > > > > > > appearently my doctor says it usually happens with people 50+ > and > > > more > > > > in men...so my case is extremely rare. i'm currently in > somewhat > > > stable > > > > condition, on 4 different medications, and a inhaler..i'm also > > > being > > > > studied at duke university..> > > > > > > > they've determined its a terminal disease, which is scary..and > i > > > was > > > > given a physciatrist. .because he didnt know how i would handle > > > it..but > > > > i'm alive and kickin, and everyday i wake up breathing is a > > fresh, > > > > good, new day! > > > > > > > > but i've had shortness of breath really bad recently, to a > point > > > where > > > > i about pass out, and my hands turn blue...but i dont wanna go > to > > > the > > > > doctors in fear something else is wrong.....> > > > > > > > have you experienced this?> > > >> > >> >>

[Guest guest]

That's what I thought, too!

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

From: livykiller <livykiller (AT) yahoo (DOT) com>Subject: Re: 15 with pulmonary fibrosisTo: Breathe-Support@ yahoogroups. comDate: Wednesday, February 11, 2009, 5:43 PM

okay, will do!i'm in the pediatric center, i see dr. voynow..> > > >> > > > livykiller,> > > > Hi and welcome. What is your name? You're right when you say > > most > > > of us here are much older then you though we've had a few in

> their > > > 20's and early 30's. I'm sure that to you that sounds ancient > also. > > > > If you are having shortness of breath and are experiencing your > > > hands turning blue you need to report this to your doctor. It's a > > > symptom that you are not getting sufficient oxygen. Please don't > > hide > > > symptoms from your doctor, it can only do you harm.> > > > By the way are you 15 as it says in your subject line or are > you > > 17?> > > > > > > > Beth in North Carolina> > > > Moderator> > > > Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > > > > > > "May you never take one single breath for granted"> > > > > > > > > > > > > > >

> > > > > ____________ _________ _________ __> > > > From: livykiller <livykiller@ ...>> > > > To: Breathe-Support@ yahoogroups. com> > > > Sent: Wednesday, February 11, 2009 1:05:50 PM> > > > Subject: 15 with pulmonary fibrosis> > > > > > > > > > > > so, i'm 17, and have pulmonary fibrosis.> > > > i was just diagnosed with it.> > > > > > > > appearently my doctor says it usually happens with people 50+ > and > > > more > > > > in men...so my case is extremely rare. i'm currently in > somewhat > > > stable > > > > condition, on 4 different medications, and a inhaler..i'm also > > > being > > > > studied at duke university..> > > >

> > > > they've determined its a terminal disease, which is scary..and > i > > > was > > > > given a physciatrist. .because he didnt know how i would handle > > > it..but > > > > i'm alive and kickin, and everyday i wake up breathing is a > > fresh, > > > > good, new day! > > > > > > > > but i've had shortness of breath really bad recently, to a > point > > > where > > > > i about pass out, and my hands turn blue...but i dont wanna go > to > > > the > > > > doctors in fear something else is wrong.....> > > > > > > > have you experienced this?> > > >> > >>

>>