Re: Hello! My introduction

[Guest guest]

Jen, My goodness you've been through hell

and back already and you're only 37!

In comparison to most of us you are really a trooper!

I was just checking last minute to see if any other people had posted

since I had last read

emails and here you are!

Please be aware that you are not alone in any of your battles now that

you've found us.

There is at least one other person who has battles ARDS here and others

with multiple

serious medical conditions that may be due to PF or caused PF.

So know that we "get it". We are all ill to one degree or another.

What we have in common is PF in its many forms.

If you've been reading for a while you are aware that our ages go from

the 20's to almost 80.

Many women and a few very wonderful men, from all over the world.

This is a very safe place to write anything, rant, cry. and yes..laugh.

Laughter has gotten most of us through many ordeals.

So, welcome aboard the "air family".

It's now time for me ( twice you age) to get off this stupid computer

and get some sleep.

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

prettypinkpuffers wrote:

Hello. My name is Jen and I'm 37y/o. I was diagnosed w/ IPF in

08/06

likely due to chemo/radiation from my allogeneic stem cell

transplants in 08/98 and 10/98 secondary to Acute Myelogenous

Leukemia. My brother was my donor who was a perfect match 6/6

antigens. In 09/99 I developed PCP pneumonia 11 months s/p STC txp

and was intubated for 11 days. I was dx'd with ARDS etc. which

could've also lead to to IPF. Not to mention chronic GVHD (graft vs

host disease) that could or could not be in my lungs. So...with all

that info we are calling it IPF. I am currently listed for double

lung txp (pretty pink puffers) and have been waiting since 01/23/08.

It seems like such a long journey, however in the big scheme of

things it has not been all that long ago that I was diagnosed. I have

been on oxygen since 04/07, but didn't start to really wear it 24/7

until 05/07 then I just had to buck up and do it.

Kim - I saw your posting and although I don't wish IPF on anyone but

I am pleased to see that there is another person like me on this

group. I would love to hear more. Over the years I have met many BMT

survivors and organ txp survivors but never someone who has had both.

It is nice to know that I'm not alone.

I have been following the board for a few days and I'm impressed with

all of the knowledge and support. Thanks for being available.

I use liquid o2. I wear my canula down, but wore it up for a long

time until I found the softech canulas which fit me the best.

Much regard.

Jen

AML 04/08, SCtxp 08/98 & 10/98, IPF 08/06.

STL, MO waiting for txp. Reside in Houston, TX

No virus found in this incoming message.

Checked by AVG - http://www.avg.com

Version: 8.0.138 / Virus Database: 270.4.10/1551 - Release Date: 7/14/2008 6:49 AM

[Guest guest]

Jen, My goodness you've been through hell

and back already and you're only 37!

In comparison to most of us you are really a trooper!

I was just checking last minute to see if any other people had posted

since I had last read

emails and here you are!

Please be aware that you are not alone in any of your battles now that

you've found us.

There is at least one other person who has battles ARDS here and others

with multiple

serious medical conditions that may be due to PF or caused PF.

So know that we "get it". We are all ill to one degree or another.

What we have in common is PF in its many forms.

If you've been reading for a while you are aware that our ages go from

the 20's to almost 80.

Many women and a few very wonderful men, from all over the world.

This is a very safe place to write anything, rant, cry. and yes..laugh.

Laughter has gotten most of us through many ordeals.

So, welcome aboard the "air family".

It's now time for me ( twice you age) to get off this stupid computer

and get some sleep.

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

prettypinkpuffers wrote:

Hello. My name is Jen and I'm 37y/o. I was diagnosed w/ IPF in

08/06

likely due to chemo/radiation from my allogeneic stem cell

transplants in 08/98 and 10/98 secondary to Acute Myelogenous

Leukemia. My brother was my donor who was a perfect match 6/6

antigens. In 09/99 I developed PCP pneumonia 11 months s/p STC txp

and was intubated for 11 days. I was dx'd with ARDS etc. which

could've also lead to to IPF. Not to mention chronic GVHD (graft vs

host disease) that could or could not be in my lungs. So...with all

that info we are calling it IPF. I am currently listed for double

lung txp (pretty pink puffers) and have been waiting since 01/23/08.

It seems like such a long journey, however in the big scheme of

things it has not been all that long ago that I was diagnosed. I have

been on oxygen since 04/07, but didn't start to really wear it 24/7

until 05/07 then I just had to buck up and do it.

Kim - I saw your posting and although I don't wish IPF on anyone but

I am pleased to see that there is another person like me on this

group. I would love to hear more. Over the years I have met many BMT

survivors and organ txp survivors but never someone who has had both.

It is nice to know that I'm not alone.

I have been following the board for a few days and I'm impressed with

all of the knowledge and support. Thanks for being available.

I use liquid o2. I wear my canula down, but wore it up for a long

time until I found the softech canulas which fit me the best.

Much regard.

Jen

AML 04/08, SCtxp 08/98 & 10/98, IPF 08/06.

STL, MO waiting for txp. Reside in Houston, TX

No virus found in this incoming message.

Checked by AVG - http://www.avg.com

Version: 8.0.138 / Virus Database: 270.4.10/1551 - Release Date: 7/14/2008 6:49 AM

[Guest guest]

Hello Jen,

Welcome to our corner of the internet. I'm 39 and I live in england. I have dermatomyositis, PF (probably nsip) and mild PH. I've been on 24/7 O2 since november. It's tedious but it has made a difference.

You've been through a lot. I hope you find the support on here that I have and I love 'prettypinkpuffers'

I look forward to seeing you post

Love Ze xx>> Hello. My name is Jen and I'm 37y/o. I was diagnosed w/ IPF in 08/06 > likely due to chemo/radiation from my allogeneic stem cell > transplants in 08/98 and 10/98 secondary to Acute Myelogenous > Leukemia. My brother was my donor who was a perfect match 6/6 > antigens. In 09/99 I developed PCP pneumonia 11 months s/p STC txp > and was intubated for 11 days. I was dx'd with ARDS etc. which > could've also lead to to IPF. Not to mention chronic GVHD (graft vs > host disease) that could or could not be in my lungs. So...with all > that info we are calling it IPF. I am currently listed for double > lung txp (pretty pink puffers) and have been waiting since 01/23/08. > It seems like such a long journey, however in the big scheme of > things it has not been all that long ago that I was diagnosed. I have > been on oxygen since 04/07, but didn't start to really wear it 24/7 > until 05/07 then I just had to buck up and do it. > > Kim - I saw your posting and although I don't wish IPF on anyone but > I am pleased to see that there is another person like me on this > group. I would love to hear more. Over the years I have met many BMT > survivors and organ txp survivors but never someone who has had both. > It is nice to know that I'm not alone.> > I have been following the board for a few days and I'm impressed with > all of the knowledge and support. Thanks for being available.> > I use liquid o2. I wear my canula down, but wore it up for a long > time until I found the softech canulas which fit me the best. > > > Much regard.> Jen> AML 04/08, SCtxp 08/98 & 10/98, IPF 08/06.> STL, MO waiting for txp. Reside in Houston, TX>

[Guest guest]

Hi Jen,

Welcome to the group though I'm sorry you have reason to be here. It sounds like you've had more than enough to cope with over the last few years. I'm glad we're here to be whatever help we can!

Welcome!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Hello! My introduction

Hello. My name is Jen and I'm 37y/o. I was diagnosed w/ IPF in 08/06 likely due to chemo/radiation from my allogeneic stem cell transplants in 08/98 and 10/98 secondary to Acute Myelogenous Leukemia. My brother was my donor who was a perfect match 6/6 antigens. In 09/99 I developed PCP pneumonia 11 months s/p STC txp and was intubated for 11 days. I was dx'd with ARDS etc. which could've also lead to to IPF. Not to mention chronic GVHD (graft vs host disease) that could or could not be in my lungs. So...with all that info we are calling it IPF. I am currently listed for double lung txp (pretty pink puffers) and have been waiting since 01/23/08. It seems like such a long journey, however in the big scheme of things it has not been all that long ago that I was diagnosed. I have been on oxygen since 04/07, but didn't start to really wear it 24/7 until 05/07 then I just had to buck up and do it.

Kim - I saw your posting and although I don't wish IPF on anyone but I am pleased to see that there is another person like me on this group. I would love to hear more. Over the years I have met many BMT survivors and organ txp survivors but never someone who has had both. It is nice to know that I'm not alone.I have been following the board for a few days and I'm impressed with all of the knowledge and support. Thanks for being available.I use liquid o2. I wear my canula down, but wore it up for a long time until I found the softech canulas which fit me the best. Much regard.JenAML 04/08, SCtxp 08/98 & 10/98, IPF 08/06.STL, MO waiting for txp. Reside in Houston, TX