Need someone to talk to...

[Guest guest]

Hi My name is Miranda. I am 28 years old and a mother of 2 young kids.

I was diagnosed back in '03. I did'nt want to believe it so I went for

second opinions and kept working and kind of ignoring it. Until I

recently got very ill. The doctors say I need to get on the list fast

and get a transplant because I have waited too long and dont have much

time left. I am here at the hospital waiting for another hospital to

except me as a transfer. I am having a hard time because of my

insurance. I am waiting to hear from one last hospital. If they

say " No " then I am going to check mysself out of here and just walk

into the other hospitals ER. If I do that they have to see me. They

cant turn me away.

I have been on prednisone for over a year now. They were trying to wean

me off of it and I got down to 20mg when I got sick. I need the to

steroids to feel " good " .

It is real herd dealing with the reality of the whole thing. I am so

scared and being away from my kids is the worst.

It sucks that there are other people with this but it is good to have

found this group.

[Guest guest]

Oh Miranda I'm very sad to read your post... you are way too young to be dealing with this... how on earth did it happen?????

I'm answering you from Australia...I'm 58 & my kids are grown-up & I have 3 grandchildren.I so hate to see you young ones affected. There are other young ones on this Board... Ze has a 6 year old daughter... she's in England & would be asleep right now! There's another youngin' from Oz but she hasn't been posting just recently.

Your feelings are totally understandable.... I do hope you get the help you need. I don't understand the US Health system.. it's very different in Australia. Beth, the Moderator of this Forum may be able to help with that.

This is a very supportive group & sopmebody will be here for you whenever you post...

Thinking of you,

in Oz

IPF: Fibrotic NSIP/ UIP

Reyanuds'

>> Hi My name is Miranda. I am 28 years old and a mother of 2 young kids. > I was diagnosed back in '03. I did'nt want to believe it so I went for > second opinions and kept working and kind of ignoring it. Until I > recently got very ill. The doctors say I need to get on the list fast > and get a transplant because I have waited too long and dont have much > time left. I am here at the hospital waiting for another hospital to > except me as a transfer. I am having a hard time because of my > insurance. I am waiting to hear from one last hospital. If they > say "No" then I am going to check mysself out of here and just walk > into the other hospitals ER. If I do that they have to see me. They > cant turn me away. > I have been on prednisone for over a year now. They were trying to wean > me off of it and I got down to 20mg when I got sick. I need the to > steroids to feel "good". > It is real herd dealing with the reality of the whole thing. I am so > scared and being away from my kids is the worst. > It sucks that there are other people with this but it is good to have > found this group.>

[Guest guest]

Miranda,

Welcome. I am so sorry that you have reason to find us but I'm glad you did. It does sound as though you're in a very difficult predicament. Where in the US are you? If you have a choice to get to one of the major university medical centers, do that asap. I don't know what the issues with your insurance are but you will get the best care for this condition and get the best transplant options at a university medical center.

Please keep in touch with us as you are able and if there's anything at all we can do to help we will.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

To: Breathe-Support Sent: Tuesday, December 9, 2008 11:16:38 PMSubject: Need someone to talk to...

Hi My name is Miranda. I am 28 years old and a mother of 2 young kids. I was diagnosed back in '03. I did'nt want to believe it so I went for second opinions and kept working and kind of ignoring it. Until I recently got very ill. The doctors say I need to get on the list fast and get a transplant because I have waited too long and dont have much time left. I am here at the hospital waiting for another hospital to except me as a transfer. I am having a hard time because of my insurance. I am waiting to hear from one last hospital. If they say "No" then I am going to check mysself out of here and just walk into the other hospitals ER. If I do that they have to see me. They cant turn me away. I have been on prednisone for over a year now. They were trying to wean me off of it and I got down to 20mg when I got sick. I need the to steroids to feel "good". It is real herd dealing with the reality of

the whole thing. I am so scared and being away from my kids is the worst. It sucks that there are other people with this but it is good to have found this group.

[Guest guest]

Miranda

Sorry you need us but glad you found us.

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: Need someone to talk to...To: Breathe-Support Date: Tuesday, December 9, 2008, 11:16 PM

Hi My name is Miranda. I am 28 years old and a mother of 2 young kids. I was diagnosed back in '03. I did'nt want to believe it so I went for second opinions and kept working and kind of ignoring it. Until I recently got very ill. The doctors say I need to get on the list fast and get a transplant because I have waited too long and dont have much time left. I am here at the hospital waiting for another hospital to except me as a transfer. I am having a hard time because of my insurance. I am waiting to hear from one last hospital. If they say "No" then I am going to check mysself out of here and just walk into the other hospitals ER. If I do that they have to see me. They cant turn me away. I have been on prednisone for over a year now. They were trying to wean me off of it and I got down to 20mg when I got sick. I need the to steroids to feel "good". It is real herd dealing with the reality of

the whole thing. I am so scared and being away from my kids is the worst. It sucks that there are other people with this but it is good to have found this group.

[Guest guest]

Miranda

Sorry you need us but glad you found us.

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: Need someone to talk to...To: Breathe-Support Date: Tuesday, December 9, 2008, 11:16 PM

Hi My name is Miranda. I am 28 years old and a mother of 2 young kids. I was diagnosed back in '03. I did'nt want to believe it so I went for second opinions and kept working and kind of ignoring it. Until I recently got very ill. The doctors say I need to get on the list fast and get a transplant because I have waited too long and dont have much time left. I am here at the hospital waiting for another hospital to except me as a transfer. I am having a hard time because of my insurance. I am waiting to hear from one last hospital. If they say "No" then I am going to check mysself out of here and just walk into the other hospitals ER. If I do that they have to see me. They cant turn me away. I have been on prednisone for over a year now. They were trying to wean me off of it and I got down to 20mg when I got sick. I need the to steroids to feel "good". It is real herd dealing with the reality of

the whole thing. I am so scared and being away from my kids is the worst. It sucks that there are other people with this but it is good to have found this group.

[Guest guest]

>

> Hi My name is Miranda. I am 28 years old and a mother of 2 young

kids.

> I was diagnosed back in '03. I did'nt want to believe it so I went

for

> second opinions and kept working and kind of ignoring it. Until I

> recently got very ill. The doctors say I need to get on the list

fast

> and get a transplant because I have waited too long and dont have

much

> time left. I am here at the hospital waiting for another hospital

to

> except me as a transfer. I am having a hard time because of my

> insurance. I am waiting to hear from one last hospital. If they

> say " No " then I am going to check mysself out of here and just walk

> into the other hospitals ER. If I do that they have to see me. They

> cant turn me away.

> I have been on prednisone for over a year now. They were trying to

wean

> me off of it and I got down to 20mg when I got sick. I need the to

> steroids to feel " good " .

> It is real herd dealing with the reality of the whole thing. I am

so

> scared and being away from my kids is the worst.

> It sucks that there are other people with this but it is good to

have

> found this group.

>

Miranda, It breaks my heart to see this monster attack someone so

young.But you can find love and support here, so glad you found the

group.Because like so many can't understand, in here " We get it " I

hope to hear you got those hospitals straightened out and they start

treating you properly.

KathyS54/04/tx

[Guest guest]

>

> Hi My name is Miranda. I am 28 years old and a mother of 2 young

kids.

> I was diagnosed back in '03. I did'nt want to believe it so I went

for

> second opinions and kept working and kind of ignoring it. Until I

> recently got very ill. The doctors say I need to get on the list

fast

> and get a transplant because I have waited too long and dont have

much

> time left. I am here at the hospital waiting for another hospital

to

> except me as a transfer. I am having a hard time because of my

> insurance. I am waiting to hear from one last hospital. If they

> say " No " then I am going to check mysself out of here and just walk

> into the other hospitals ER. If I do that they have to see me. They

> cant turn me away.

> I have been on prednisone for over a year now. They were trying to

wean

> me off of it and I got down to 20mg when I got sick. I need the to

> steroids to feel " good " .

> It is real herd dealing with the reality of the whole thing. I am

so

> scared and being away from my kids is the worst.

> It sucks that there are other people with this but it is good to

have

> found this group.

>

Miranda, It breaks my heart to see this monster attack someone so

young.But you can find love and support here, so glad you found the

group.Because like so many can't understand, in here " We get it " I

hope to hear you got those hospitals straightened out and they start

treating you properly.

KathyS54/04/tx

[Guest guest]

>

> Hi My name is Miranda. I am 28 years old and a mother of 2 young

kids.

> I was diagnosed back in '03. I did'nt want to believe it so I went

for

> second opinions and kept working and kind of ignoring it. Until I

> recently got very ill. The doctors say I need to get on the list

fast

> and get a transplant because I have waited too long and dont have

much

> time left. I am here at the hospital waiting for another hospital

to

> except me as a transfer. I am having a hard time because of my

> insurance. I am waiting to hear from one last hospital. If they

> say " No " then I am going to check mysself out of here and just walk

> into the other hospitals ER. If I do that they have to see me. They

> cant turn me away.

> I have been on prednisone for over a year now. They were trying to

wean

> me off of it and I got down to 20mg when I got sick. I need the to

> steroids to feel " good " .

> It is real herd dealing with the reality of the whole thing. I am

so

> scared and being away from my kids is the worst.

> It sucks that there are other people with this but it is good to

have

> found this group.

>

Miranda, It breaks my heart to see this monster attack someone so

young.But you can find love and support here, so glad you found the

group.Because like so many can't understand, in here " We get it " I

hope to hear you got those hospitals straightened out and they start

treating you properly.

KathyS54/04/tx

[Guest guest]

Hi Miranda,

Jumping in to welcome you and to tell you I am so sorry for your health problems. I live in Carlsbad. Where are you in California? R. (52) Sarcoid/PF 3/2006 Carlsbad, California

Subject: Re: Need someone to talk to...To: Breathe-Support Date: Tuesday, December 9, 2008, 9:56 PM

Thank you. I have never smoked a cig in my life. However second hand smoke was everywhere I went as a child. The doctors are unsure what the cause is. I am at the point now that a biopsy is to risky to do. They are doing all the testing they can and think I may have Lupus. Still not 100% sure. Yes the U.S. healthcare and insurance system needs alot of work. I am in California. My son is 6 years old and my daughter is 3 months. It is so hard to be away from them. They are with my mom and she brings them to see me every day. My daughter looks bigger and bigger every day and I am so scared she is gonna forget me. My son is old enough to understand alot. Before I came to the hospital he was such a big help. He did all of the things I couldnt do. Like carry the grocries in from the car and help me get the clothes out of the drier, etc. I miss them so much !Thank you all for listening. If you

believe in prayer...please pray for me and my family. Thank you.> >> > Hi My name is Miranda. I am 28 years old and a mother of 2 young kids.> > I was diagnosed back in '03. I did'nt want to believe it so I went for> > second opinions and kept working and kind of ignoring it. Until I> > recently got very ill. The doctors say I

need to get on the list fast> > and get a transplant because I have waited too long and dont have much> > time left. I am here at the hospital waiting for another hospital to> > except me as a transfer. I am having a hard time because of my> > insurance. I am waiting to hear from one last hospital. If they> > say "No" then I am going to check mysself out of here and just walk> > into the other hospitals ER. If I do that they have to see me. They> > cant turn me away.> > I have been on prednisone for over a year now. They were trying to> wean> > me off of it and I got down to 20mg when I got sick. I need the to> > steroids to feel "good".> > It is real herd dealing with the reality of the whole thing. I am so> > scared and being away from my kids is the worst.> > It sucks that there are other

people with this but it is good to have> > found this group.> >>

[Guest guest]

Hi Miranda,

Jumping in to welcome you and to tell you I am so sorry for your health problems. I live in Carlsbad. Where are you in California? R. (52) Sarcoid/PF 3/2006 Carlsbad, California

Subject: Re: Need someone to talk to...To: Breathe-Support Date: Tuesday, December 9, 2008, 9:56 PM

Thank you. I have never smoked a cig in my life. However second hand smoke was everywhere I went as a child. The doctors are unsure what the cause is. I am at the point now that a biopsy is to risky to do. They are doing all the testing they can and think I may have Lupus. Still not 100% sure. Yes the U.S. healthcare and insurance system needs alot of work. I am in California. My son is 6 years old and my daughter is 3 months. It is so hard to be away from them. They are with my mom and she brings them to see me every day. My daughter looks bigger and bigger every day and I am so scared she is gonna forget me. My son is old enough to understand alot. Before I came to the hospital he was such a big help. He did all of the things I couldnt do. Like carry the grocries in from the car and help me get the clothes out of the drier, etc. I miss them so much !Thank you all for listening. If you

believe in prayer...please pray for me and my family. Thank you.> >> > Hi My name is Miranda. I am 28 years old and a mother of 2 young kids.> > I was diagnosed back in '03. I did'nt want to believe it so I went for> > second opinions and kept working and kind of ignoring it. Until I> > recently got very ill. The doctors say I

need to get on the list fast> > and get a transplant because I have waited too long and dont have much> > time left. I am here at the hospital waiting for another hospital to> > except me as a transfer. I am having a hard time because of my> > insurance. I am waiting to hear from one last hospital. If they> > say "No" then I am going to check mysself out of here and just walk> > into the other hospitals ER. If I do that they have to see me. They> > cant turn me away.> > I have been on prednisone for over a year now. They were trying to> wean> > me off of it and I got down to 20mg when I got sick. I need the to> > steroids to feel "good".> > It is real herd dealing with the reality of the whole thing. I am so> > scared and being away from my kids is the worst.> > It sucks that there are other

people with this but it is good to have> > found this group.> >>

[Guest guest]

Hi Miranda,

Jumping in to welcome you and to tell you I am so sorry for your health problems. I live in Carlsbad. Where are you in California? R. (52) Sarcoid/PF 3/2006 Carlsbad, California

Subject: Re: Need someone to talk to...To: Breathe-Support Date: Tuesday, December 9, 2008, 9:56 PM

Thank you. I have never smoked a cig in my life. However second hand smoke was everywhere I went as a child. The doctors are unsure what the cause is. I am at the point now that a biopsy is to risky to do. They are doing all the testing they can and think I may have Lupus. Still not 100% sure. Yes the U.S. healthcare and insurance system needs alot of work. I am in California. My son is 6 years old and my daughter is 3 months. It is so hard to be away from them. They are with my mom and she brings them to see me every day. My daughter looks bigger and bigger every day and I am so scared she is gonna forget me. My son is old enough to understand alot. Before I came to the hospital he was such a big help. He did all of the things I couldnt do. Like carry the grocries in from the car and help me get the clothes out of the drier, etc. I miss them so much !Thank you all for listening. If you

believe in prayer...please pray for me and my family. Thank you.> >> > Hi My name is Miranda. I am 28 years old and a mother of 2 young kids.> > I was diagnosed back in '03. I did'nt want to believe it so I went for> > second opinions and kept working and kind of ignoring it. Until I> > recently got very ill. The doctors say I

need to get on the list fast> > and get a transplant because I have waited too long and dont have much> > time left. I am here at the hospital waiting for another hospital to> > except me as a transfer. I am having a hard time because of my> > insurance. I am waiting to hear from one last hospital. If they> > say "No" then I am going to check mysself out of here and just walk> > into the other hospitals ER. If I do that they have to see me. They> > cant turn me away.> > I have been on prednisone for over a year now. They were trying to> wean> > me off of it and I got down to 20mg when I got sick. I need the to> > steroids to feel "good".> > It is real herd dealing with the reality of the whole thing. I am so> > scared and being away from my kids is the worst.> > It sucks that there are other

people with this but it is good to have> > found this group.> >>

[Guest guest]

Hello, I am in the Pasadena area.

To: Breathe-Support Sent: Wednesday, December 10, 2008 12:34:59 PMSubject: Re: Re: Need someone to talk to...

Hi Miranda,

Jumping in to welcome you and to tell you I am so sorry for your health problems. I live in Carlsbad. Where are you in California? R. (52) Sarcoid/PF 3/2006 Carlsbad, California

From: tazluvzraz <tazluvzraz (AT) yahoo (DOT) com>Subject: Re: Need someone to talk to...To: Breathe-Support@ yahoogroups. comDate: Tuesday, December 9, 2008, 9:56 PM

Thank you. I have never smoked a cig in my life. However second hand smoke was everywhere I went as a child. The doctors are unsure what the cause is. I am at the point now that a biopsy is to risky to do. They are doing all the testing they can and think I may have Lupus. Still not 100% sure. Yes the U.S. healthcare and insurance system needs alot of work. I am in California. My son is 6 years old and my daughter is 3 months. It is so hard to be away from them. They are with my mom and she brings them to see me every day. My daughter looks bigger and bigger every day and I am so scared she is gonna forget me. My son is old enough to understand alot. Before I came to the hospital he was such a big help. He did all of the things I couldnt do. Like carry the grocries in from the car and help me get the clothes out of the drier, etc. I miss them so much !Thank you all for listening. If you

believe in prayer...please pray for me and my family. Thank you.> >> > Hi My name is Miranda. I am 28 years old and a mother of 2 young kids.> > I was diagnosed back in '03. I did'nt want to believe it so I went for> > second opinions

and kept working and kind of ignoring it. Until I> > recently got very ill. The doctors say I need to get on the list fast> > and get a transplant because I have waited too long and dont have much> > time left. I am here at the hospital waiting for another hospital to> > except me as a transfer. I am having a hard time because of my> > insurance. I am waiting to hear from one last hospital. If they> > say "No" then I am going to check mysself out of here and just walk> > into the other hospitals ER. If I do that they have to see me. They> > cant turn me away.> > I have been on prednisone for over a year now. They were trying to> wean> > me off of it and I got down to 20mg when I got sick. I need the to> > steroids to feel "good".> > It is real herd dealing with the reality of the whole thing. I am

so> > scared and being away from my kids is the worst.> > It sucks that there are other people with this but it is good to have> > found this group.> >>

[Guest guest]

Hi Miranda,

We're only about an hour away from each other! Are you doing any better? Home from the hospital yet? Thank goodness you have your mom close by. I can't imagine having this disease and a small baby. Your pregnancy must have been really hard. If you ever need to vent feel free to call me . God bless you- R. (52) Sarcoid/PF 3/2006 Carlsbad, California

From: tazluvzraz <tazluvzraz (AT) yahoo (DOT) com>Subject: Re: Need someone to talk to...To: Breathe-Support@ yahoogroups. comDate: Tuesday, December 9, 2008, 9:56 PM

Thank you. I have never smoked a cig in my life. However second hand smoke was everywhere I went as a child. The doctors are unsure what the cause is. I am at the point now that a biopsy is to risky to do. They are doing all the testing they can and think I may have Lupus. Still not 100% sure. Yes the U.S. healthcare and insurance system needs alot of work. I am in California. My son is 6 years old and my daughter is 3 months. It is so hard to be away from them. They are with my mom and she brings them to see me every day. My daughter looks bigger and bigger every day and I am so scared she is gonna forget me. My son is old enough to understand alot. Before I came to the hospital he was such a big help. He did all of the things I couldnt do. Like carry the grocries in from the car and help me get the clothes out of the drier, etc. I miss them so much !Thank you all for listening. If you

believe in prayer...please pray for me and my family. Thank you.> >> > Hi My name is Miranda. I am 28 years old and a mother of 2 young kids.> > I was diagnosed back in '03. I did'nt want to believe it so I went for> > second opinions and kept working and kind of ignoring it. Until I> > recently got very ill. The doctors say I

need to get on the list fast> > and get a transplant because I have waited too long and dont have much> > time left. I am here at the hospital waiting for another hospital to> > except me as a transfer. I am having a hard time because of my> > insurance. I am waiting to hear from one last hospital. If they> > say "No" then I am going to check mysself out of here and just walk> > into the other hospitals ER. If I do that they have to see me. They> > cant turn me away.> > I have been on prednisone for over a year now. They were trying to> wean> > me off of it and I got down to 20mg when I got sick. I need the to> > steroids to feel "good".> > It is real herd dealing with the reality of the whole thing. I am so> > scared and being away from my kids is the worst.> > It sucks that there are other

people with this but it is good to have> > found this group.> >>