New to group - my introduction

[Guest guest]

Hi, I'm a new member and wanted to introduce myself. I'm Pam, 37 years old. I

live in Pennsylvania with my husband, 10 year old daughter and 8 year old son.

I was diagnosed a few days ago with pulmonary fibrosis. I'll find out more at my

next appointment but as of right now the assumption we're going with is that

it's from fibrosing mediastinitis as a result of a histoplasmosis infection I

had back in 1998. Currently the upper and middle lobe branches of my right

pulmonary artery are blocked by calcified lymph nodes/granulomas with some

slight impingement on the lower lobe and some pressure on the bronchial tubes,

and there is a formation of what looks on CT to be new granulomatous tissue in

the upper lobe of my left lung that comes with some pleuritic-type pain.

The way it was discovered was that about a month ago now, I began noticing that

I would get out of breath doing things that I would usually be able to do -

hauling groceries or laundry upstairs, walking the 3/4 mile to school (I'm a

college student), running around with the kids, things like that. I didn't have

any weight change or recent illness or anything that would explain it. I went to

my GP and he ordered blood counts, thyroid tests, a CXR and a CT scan, and then

he had me do a " six-minute walk " test with his nurse. I lasted about two and a

half minutes before my O2 sats were at 72%, which bought me a trip directly to

the hospital, do not pass go, etc etc.

In the hospital they did the CT scan, which showed the masses I mentioned, and

also a VQ scan. The VQ showed that the left lung is ventilating and perfusing

normally, and the right lung is ventilating normally but the upper two lobes are

not perfusing. After a brief run-in with an idiot pulmonologist who said, " Well,

yes, I see all that but I don't think it has anything to do with your shortness

of breath, I think it's an exacerbation of asthma " , my GP sent me to UPMC

Passavant and I got looked over there by Dr. Landreneau and some of the

pulmonologists he works with. I'm a lot more reassured by their level of

knowledge vs. that of the local guy, but I'm still scared to death about what's

to come.

Um...haha, I guess I also tend to babble on. Thanks for opening your group to

me, I hope I can be some help to people here just as I hope I can find some help

in getting info and dealing with this.

Pam

[Guest guest]

Hi Pam and welcome.

I can not offer anything at this time, except the standard welcome, glad you

found the group and sorry that you needed to come here. You will find a lot of

knowledge to be found at this site, keep an eye out for posts from Bruce

Moreland (the braniac of the group) as I am sure he will post to your shortly.

My PF (NSIP) is related to an autoimmmune disease and I am in much better shape

than you right now due to keeping that under control with medication. However,

wishing you the best as you traverse this road with the rest of us.

I see that you must be located over in the west/central part of PA since you

were referred to UPMC Passavant near Pittsburgh. I am the SE are of PA about 40

miles west of Philly.

Tom AOSD 04 Asthma 06 NSIP 08

>

> Hi, I'm a new member and wanted to introduce myself. I'm Pam, 37 years old. I

live in Pennsylvania with my husband, 10 year old daughter and 8 year old son.

>

> I was diagnosed a few days ago with pulmonary fibrosis. I'll find out more at

my next appointment but as of right now the assumption we're going with is that

it's from fibrosing mediastinitis as a result of a histoplasmosis infection I

had back in 1998. Currently the upper and middle lobe branches of my right

pulmonary artery are blocked by calcified lymph nodes/granulomas with some

slight impingement on the lower lobe and some pressure on the bronchial tubes,

and there is a formation of what looks on CT to be new granulomatous tissue in

the upper lobe of my left lung that comes with some pleuritic-type pain.

>

> The way it was discovered was that about a month ago now, I began noticing

that I would get out of breath doing things that I would usually be able to do -

hauling groceries or laundry upstairs, walking the 3/4 mile to school (I'm a

college student), running around with the kids, things like that. I didn't have

any weight change or recent illness or anything that would explain it. I went to

my GP and he ordered blood counts, thyroid tests, a CXR and a CT scan, and then

he had me do a " six-minute walk " test with his nurse. I lasted about two and a

half minutes before my O2 sats were at 72%, which bought me a trip directly to

the hospital, do not pass go, etc etc.

>

> In the hospital they did the CT scan, which showed the masses I mentioned, and

also a VQ scan. The VQ showed that the left lung is ventilating and perfusing

normally, and the right lung is ventilating normally but the upper two lobes are

not perfusing. After a brief run-in with an idiot pulmonologist who said, " Well,

yes, I see all that but I don't think it has anything to do with your shortness

of breath, I think it's an exacerbation of asthma " , my GP sent me to UPMC

Passavant and I got looked over there by Dr. Landreneau and some of the

pulmonologists he works with. I'm a lot more reassured by their level of

knowledge vs. that of the local guy, but I'm still scared to death about what's

to come.

>

> Um...haha, I guess I also tend to babble on. Thanks for opening your group to

me, I hope I can be some help to people here just as I hope I can find some help

in getting info and dealing with this.

>

> Pam

>

[Guest guest]

Hi Pam,Welcome to the group! Sorry to hear you have this terrible disease and more sorry that you are only 37 years old! C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Sunday, August 23, 2009 8:48:39 AMSubject: New to group - my introduction

Hi, I'm a new member and wanted to introduce myself. I'm Pam, 37 years old. I live in Pennsylvania with my husband, 10 year old daughter and 8 year old son.

I was diagnosed a few days ago with pulmonary fibrosis. I'll find out more at my next appointment but as of right now the assumption we're going with is that it's from fibrosing mediastinitis as a result of a histoplasmosis infection I had back in 1998. Currently the upper and middle lobe branches of my right pulmonary artery are blocked by calcified lymph nodes/granulomas with some slight impingement on the lower lobe and some pressure on the bronchial tubes, and there is a formation of what looks on CT to be new granulomatous tissue in the upper lobe of my left lung that comes with some pleuritic-type pain.

The way it was discovered was that about a month ago now, I began noticing that I would get out of breath doing things that I would usually be able to do - hauling groceries or laundry upstairs, walking the 3/4 mile to school (I'm a college student), running around with the kids, things like that. I didn't have any weight change or recent illness or anything that would explain it. I went to my GP and he ordered blood counts, thyroid tests, a CXR and a CT scan, and then he had me do a "six-minute walk" test with his nurse. I lasted about two and a half minutes before my O2 sats were at 72%, which bought me a trip directly to the hospital, do not pass go, etc etc.

In the hospital they did the CT scan, which showed the masses I mentioned, and also a VQ scan. The VQ showed that the left lung is ventilating and perfusing normally, and the right lung is ventilating normally but the upper two lobes are not perfusing. After a brief run-in with an idiot pulmonologist who said, "Well, yes, I see all that but I don't think it has anything to do with your shortness of breath, I think it's an exacerbation of asthma", my GP sent me to UPMC Passavant and I got looked over there by Dr. Landreneau and some of the pulmonologists he works with. I'm a lot more reassured by their level of knowledge vs. that of the local guy, but I'm still scared to death about what's to come.

Um...haha, I guess I also tend to babble on. Thanks for opening your group to me, I hope I can be some help to people here just as I hope I can find some help in getting info and dealing with this.

Pam

[Guest guest]

Pam,

Welcome to the board!! I'm so sorry that you had reason to find your way here but since you did I'm glad you found us.

I'll be honest, I had never heard of fibrosing mediastinitis until I got your membership request. I had to do some quick Googling to get a teeny handle on what it is. Seems like you are in the midst of a nightmare. I wish I could offer you some specific information or help but what I can offer is the support and friendship of this truly amazing group of people.

I am 50 years old and was diagnosed a little over 3 years ago with fibrotic NSIP. I live in Durham, NC and have a 24 year old son who lives in the mountains in the western part of NC. My fibrosis was caused by a connective tissue disease called dermatomyositis.

We have all ages and stages and diagnosis here in this group but we share a spirit of support and compassion for each other. I learn something almost every day from some one here, sometimes it's tiny and sometimes it's something mind boggling but it all helps me learn how to live with this disease.

Welcome once again, I hope you find the support and friendship here that I have!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, August 23, 2009 11:48:39 AMSubject: New to group - my introduction

Hi, I'm a new member and wanted to introduce myself. I'm Pam, 37 years old. I live in Pennsylvania with my husband, 10 year old daughter and 8 year old son. I was diagnosed a few days ago with pulmonary fibrosis. I'll find out more at my next appointment but as of right now the assumption we're going with is that it's from fibrosing mediastinitis as a result of a histoplasmosis infection I had back in 1998. Currently the upper and middle lobe branches of my right pulmonary artery are blocked by calcified lymph nodes/granulomas with some slight impingement on the lower lobe and some pressure on the bronchial tubes, and there is a formation of what looks on CT to be new granulomatous tissue in the upper lobe of my left lung that comes with some pleuritic-type pain. The way it was discovered was that about a month ago now, I began noticing that I would get out of breath doing things that I would usually be able to do - hauling groceries

or laundry upstairs, walking the 3/4 mile to school (I'm a college student), running around with the kids, things like that. I didn't have any weight change or recent illness or anything that would explain it. I went to my GP and he ordered blood counts, thyroid tests, a CXR and a CT scan, and then he had me do a "six-minute walk" test with his nurse. I lasted about two and a half minutes before my O2 sats were at 72%, which bought me a trip directly to the hospital, do not pass go, etc etc. In the hospital they did the CT scan, which showed the masses I mentioned, and also a VQ scan. The VQ showed that the left lung is ventilating and perfusing normally, and the right lung is ventilating normally but the upper two lobes are not perfusing. After a brief run-in with an idiot pulmonologist who said, "Well, yes, I see all that but I don't think it has anything to do with your shortness of breath, I think it's an exacerbation of asthma", my GP sent

me to UPMC Passavant and I got looked over there by Dr. Landreneau and some of the pulmonologists he works with. I'm a lot more reassured by their level of knowledge vs. that of the local guy, but I'm still scared to death about what's to come. Um...haha, I guess I also tend to babble on. Thanks for opening your group to me, I hope I can be some help to people here just as I hope I can find some help in getting info and dealing with this.Pam

[Guest guest]

Hi Pam,

Welcome to the group. What part of PA do you live in? There are quite a few of us which is a support in itself so we don't feel so alone. Hope you find information that is helpful and I'm certain you will share information that will help others.

Welcome again,

Adrienne

Subject: New to group - my introductionTo: Breathe-Support Date: Sunday, August 23, 2009, 3:48 PM

Hi, I'm a new member and wanted to introduce myself. I'm Pam, 37 years old. I live in Pennsylvania with my husband, 10 year old daughter and 8 year old son. I was diagnosed a few days ago with pulmonary fibrosis. I'll find out more at my next appointment but as of right now the assumption we're going with is that it's from fibrosing mediastinitis as a result of a histoplasmosis infection I had back in 1998. Currently the upper and middle lobe branches of my right pulmonary artery are blocked by calcified lymph nodes/granulomas with some slight impingement on the lower lobe and some pressure on the bronchial tubes, and there is a formation of what looks on CT to be new granulomatous tissue in the upper lobe of my left lung that comes with some pleuritic-type pain. The way it was discovered was that about a month ago now, I began noticing that I would get out of breath doing things that I would usually be able to do - hauling groceries

or laundry upstairs, walking the 3/4 mile to school (I'm a college student), running around with the kids, things like that. I didn't have any weight change or recent illness or anything that would explain it. I went to my GP and he ordered blood counts, thyroid tests, a CXR and a CT scan, and then he had me do a "six-minute walk" test with his nurse. I lasted about two and a half minutes before my O2 sats were at 72%, which bought me a trip directly to the hospital, do not pass go, etc etc. In the hospital they did the CT scan, which showed the masses I mentioned, and also a VQ scan. The VQ showed that the left lung is ventilating and perfusing normally, and the right lung is ventilating normally but the upper two lobes are not perfusing. After a brief run-in with an idiot pulmonologist who said, "Well, yes, I see all that but I don't think it has anything to do with your shortness of breath, I think it's an exacerbation of asthma", my GP sent

me to UPMC Passavant and I got looked over there by Dr. Landreneau and some of the pulmonologists he works with. I'm a lot more reassured by their level of knowledge vs. that of the local guy, but I'm still scared to death about what's to come. Um...haha, I guess I also tend to babble on. Thanks for opening your group to me, I hope I can be some help to people here just as I hope I can find some help in getting info and dealing with this.Pam

[Guest guest]

Pam, welcome to our group. At the same time, I am sorry that you have to be here. You'lll find lots of

friendly folks who have lots of experience with PF and lots of other diseases that are associated with it.

We understand the frustations of dealing with such a disturbing disease, so every one who feels the need

for a shoulder to cry upon or to just vent and wail is in the right place. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Sunday, August 23, 2009 11:48:39 AMSubject: New to group - my introduction

Hi, I'm a new member and wanted to introduce myself. I'm Pam, 37 years old. I live in Pennsylvania with my husband, 10 year old daughter and 8 year old son. I was diagnosed a few days ago with pulmonary fibrosis. I'll find out more at my next appointment but as of right now the assumption we're going with is that it's from fibrosing mediastinitis as a result of a histoplasmosis infection I had back in 1998. Currently the upper and middle lobe branches of my right pulmonary artery are blocked by calcified lymph nodes/granulomas with some slight impingement on the lower lobe and some pressure on the bronchial tubes, and there is a formation of what looks on CT to be new granulomatous tissue in the upper lobe of my left lung that comes with some pleuritic-type pain. The way it was discovered was that about a month ago now, I began noticing that I would get out of breath doing things that I would usually be able to do - hauling groceries

or laundry upstairs, walking the 3/4 mile to school (I'm a college student), running around with the kids, things like that. I didn't have any weight change or recent illness or anything that would explain it. I went to my GP and he ordered blood counts, thyroid tests, a CXR and a CT scan, and then he had me do a "six-minute walk" test with his nurse. I lasted about two and a half minutes before my O2 sats were at 72%, which bought me a trip directly to the hospital, do not pass go, etc etc. In the hospital they did the CT scan, which showed the masses I mentioned, and also a VQ scan. The VQ showed that the left lung is ventilating and perfusing normally, and the right lung is ventilating normally but the upper two lobes are not perfusing. After a brief run-in with an idiot pulmonologist who said, "Well, yes, I see all that but I don't think it has anything to do with your shortness of breath, I think it's an exacerbation of asthma", my GP sent

me to UPMC Passavant and I got looked over there by Dr. Landreneau and some of the pulmonologists he works with. I'm a lot more reassured by their level of knowledge vs. that of the local guy, but I'm still scared to death about what's to come. Um...haha, I guess I also tend to babble on. Thanks for opening your group to me, I hope I can be some help to people here just as I hope I can find some help in getting info and dealing with this..Pam

[Guest guest]

Pam. Welcome to yet another

Pennsylvanian!!!

I'm Z. and I live in the NW suburbs of Philadelphia.

I go to the University of Pennsylvania Lung Center.

There are several of us in PA!!

We've had a few lunch dates and are planning others.

You are so young for this mess!!! I can only guess how you feel

having two small grand daughters of my own. They are only here weekly.

They sap my energy! In a good way!

My kids are almost 39,36 and 30!

There are many younger people on this board. I hope

they will reach out to you too.

Welcome and know that we are here and we"get it"

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07

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

cessna62foxtrot wrote:

Hi, I'm a new member and wanted to introduce myself. I'm Pam, 37

years old. I live in Pennsylvania with my husband, 10 year old daughter

and 8 year old son.

I was diagnosed a few days ago with pulmonary fibrosis. I'll find out

more at my next appointment but as of right now the assumption we're

going with is that it's from fibrosing mediastinitis as a result of a

histoplasmosis infection I had back in 1998. Currently the upper and

middle lobe branches of my right pulmonary artery are blocked by

calcified lymph nodes/granulomas with some slight impingement on the

lower lobe and some pressure on the bronchial tubes, and there is a

formation of what looks on CT to be new granulomatous tissue in the

upper lobe of my left lung that comes with some pleuritic-type pain.

The way it was discovered was that about a month ago now, I began

noticing that I would get out of breath doing things that I would

usually be able to do - hauling groceries or laundry upstairs, walking

the 3/4 mile to school (I'm a college student), running around with the

kids, things like that. I didn't have any weight change or recent

illness or anything that would explain it. I went to my GP and he

ordered blood counts, thyroid tests, a CXR and a CT scan, and then he

had me do a "six-minute walk" test with his nurse. I lasted about two

and a half minutes before my O2 sats were at 72%, which bought me a

trip directly to the hospital, do not pass go, etc etc.

In the hospital they did the CT scan, which showed the masses I

mentioned, and also a VQ scan. The VQ showed that the left lung is

ventilating and perfusing normally, and the right lung is ventilating

normally but the upper two lobes are not perfusing. After a brief

run-in with an idiot pulmonologist who said, "Well, yes, I see all that

but I don't think it has anything to do with your shortness of breath,

I think it's an exacerbation of asthma", my GP sent me to UPMC

Passavant and I got looked over there by Dr. Landreneau and some of the

pulmonologists he works with. I'm a lot more reassured by their level

of knowledge vs. that of the local guy, but I'm still scared to death

about what's to come.

Um...haha, I guess I also tend to babble on. Thanks for opening your

group to me, I hope I can be some help to people here just as I hope I

can find some help in getting info and dealing with this.

Pam

[Guest guest]

Hi Pam. Welcome to our group. I hope you can find answers as well as peace as

companionship in this group. I know I have.

S, Lubbock, TX

NSIP w/PF 12/2006

>

> Hi, I'm a new member and wanted to introduce myself. I'm Pam, 37 years old. I

live in Pennsylvania with my husband, 10 year old daughter and 8 year old son.

>

> I was diagnosed a few days ago with pulmonary fibrosis. I'll find out more at

my next appointment but as of right now the assumption we're going with is that

it's from fibrosing mediastinitis as a result of a histoplasmosis infection I

had back in 1998. Currently the upper and middle lobe branches of my right

pulmonary artery are blocked by calcified lymph nodes/granulomas with some

slight impingement on the lower lobe and some pressure on the bronchial tubes,

and there is a formation of what looks on CT to be new granulomatous tissue in

the upper lobe of my left lung that comes with some pleuritic-type pain.

>

> The way it was discovered was that about a month ago now, I began noticing

that I would get out of breath doing things that I would usually be able to do -

hauling groceries or laundry upstairs, walking the 3/4 mile to school (I'm a

college student), running around with the kids, things like that. I didn't have

any weight change or recent illness or anything that would explain it. I went to

my GP and he ordered blood counts, thyroid tests, a CXR and a CT scan, and then

he had me do a " six-minute walk " test with his nurse. I lasted about two and a

half minutes before my O2 sats were at 72%, which bought me a trip directly to

the hospital, do not pass go, etc etc.

>

> In the hospital they did the CT scan, which showed the masses I mentioned, and

also a VQ scan. The VQ showed that the left lung is ventilating and perfusing

normally, and the right lung is ventilating normally but the upper two lobes are

not perfusing. After a brief run-in with an idiot pulmonologist who said, " Well,

yes, I see all that but I don't think it has anything to do with your shortness

of breath, I think it's an exacerbation of asthma " , my GP sent me to UPMC

Passavant and I got looked over there by Dr. Landreneau and some of the

pulmonologists he works with. I'm a lot more reassured by their level of

knowledge vs. that of the local guy, but I'm still scared to death about what's

to come.

>

> Um...haha, I guess I also tend to babble on. Thanks for opening your group to

me, I hope I can be some help to people here just as I hope I can find some help

in getting info and dealing with this.

>

> Pam

>

[Guest guest]

Welcome Pam, Although as others say 'Sorry you NEEDED to find us!

You have a most unusual story....many of us have no idea of the cause of our PF....many of us are a 'Work In Progress' (myself included & I was first Diagnosed in 2007)

The 'unknowing' is really hard & must be particulalry difficult for one as young as you with young children. Sadly you're not alone in that either on this Forum. I'm sure the other younger members will reach out to you.

Here you will find understanding, experiences, lots of 'cyberspace hand-holding & zillions of HUGS.....

Just don't forget to 'Smell the Roses'....

Regards,

in Oz (Australia)

IPF; Fibrotic NSIP/UIP????

May 2007

Raynaud's

may 2007

Ro52 Antibody

May 2008

SSNHL

July 2009

??????Autoimmune/CTD/CVD Disease (SS/SLE/MS)

July 2009

>> Hi, I'm a new member and wanted to introduce myself. I'm Pam, 37 years old. I live in Pennsylvania with my husband, 10 year old daughter and 8 year old son. > > I was diagnosed a few days ago with pulmonary fibrosis. I'll find out more at my next appointment but as of right now the assumption we're going with is that it's from fibrosing mediastinitis as a result of a histoplasmosis infection I had back in 1998. Currently the upper and middle lobe branches of my right pulmonary artery are blocked by calcified lymph nodes/granulomas with some slight impingement on the lower lobe and some pressure on the bronchial tubes, and there is a formation of what looks on CT to be new granulomatous tissue in the upper lobe of my left lung that comes with some pleuritic-type pain. > > The way it was discovered was that about a month ago now, I began noticing that I would get out of breath doing things that I would usually be able to do - hauling groceries or laundry upstairs, walking the 3/4 mile to school (I'm a college student), running around with the kids, things like that. I didn't have any weight change or recent illness or anything that would explain it. I went to my GP and he ordered blood counts, thyroid tests, a CXR and a CT scan, and then he had me do a "six-minute walk" test with his nurse. I lasted about two and a half minutes before my O2 sats were at 72%, which bought me a trip directly to the hospital, do not pass go, etc etc. > > In the hospital they did the CT scan, which showed the masses I mentioned, and also a VQ scan. The VQ showed that the left lung is ventilating and perfusing normally, and the right lung is ventilating normally but the upper two lobes are not perfusing. After a brief run-in with an idiot pulmonologist who said, "Well, yes, I see all that but I don't think it has anything to do with your shortness of breath, I think it's an exacerbation of asthma", my GP sent me to UPMC Passavant and I got looked over there by Dr. Landreneau and some of the pulmonologists he works with. I'm a lot more reassured by their level of knowledge vs. that of the local guy, but I'm still scared to death about what's to come. > > Um...haha, I guess I also tend to babble on. Thanks for opening your group to me, I hope I can be some help to people here just as I hope I can find some help in getting info and dealing with this.> > Pam>