New member here

[Guest guest]

Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on

Thursday...however have been experiencing strong symptoms and begging

the Dr's. to take me seriously for the past 5 months. I live in an

extremely small town in N.B., Canada, so to get scheduled for tests

and procedures, it seems like you have to wait an eternity! *sigh* I

have a very complicated medical history and so I at least know that my

PF is NOT the IPF variety, as I know mine is related to my autoimmune

disease. In 2001, when I was 28, I was diagnosed with the autoimmune

disease, Polymyositis and I also tested positive for the anti JO-1

antibody. Apparently this antibody means that you have a very high

chance at getting an ILD. I was also diagnosed with Sjogrens Syndrome

and Raynauds Phenomenon during this time. Immediately prior to

getting diagnosed with the above, I had 2 blood clots in my left leg

and 3 blood clots in my lungs, therefore, I am now taking Warfarin for

life. I've also had Asthma since childhood. That's my medical history

in a nutshell. Over the past 5 months, I haven't been able to breathe

doing the simplest of tasks, such as bathing (that's the worst!),

getting dressed or changed, and sometimes even brushing my teeth or

washing my face. I have this intense burning in my chest when I

inhale and it just about kills me to yawn, because of that burning

sensation (all my Dr.'s would do is lecture me about GERD when I

talked to them about this but I knew it had nothing to do with GERD

since my GERD is very well controlled. It was finally a CT Scan that

I had done 2 weeks ago that apparently confirmed my PF diagnosis and

apparently I am at the " early stage " . I have seen my Pulmonologist

once previous to having my CT Scan done and I will see him again but I

am waiting to have a 2nd set of Pulmonary Function test performed

(along with blood gases), as well as an Echocardiogram done. When my

GP told me my diagnosis on Thursday, she basically told me the news as

if she were diagnosing me with the common cold. It was very matter of

fact (and dare I say chipper?) and she sent me out the door. Of

course I didn't know what it was she was talking about so I was

absolutely fine then and there but once I got home and did some

research and let the news register, I got REALLY upset at the way she

told me. We've had an awesome relationship over the past 15 years and

I just can't believe that she wouldn't have more sympathy than that!!?

To be perfectly honest, I'm feeling quite hopeless. Is this as bad as

I think it is?? I know you all are in the same boat as I am and

probably have had to deal with all the ugliness this disease brings

for far too long and I'm so sorry I had to find you this way!!

However, I desperately need your support right now and all the advice

that you have to offer. Thankyou!

Dawn, 34, married, mother of 2 girls, ages 11 & 9

[Guest guest]

Welcome Dawn, although I'm sorry you have to be here. My name is . I'm also 34. I live in Kansas City and work as a journalist, although if I don't find a way to cut my medical expenses, I'm not sure how much longer I can do that. Long story. I have PF because of Hermansky-Pudlak Syndrome, a rare type of albinism that causes vision loss, a bleeding disorder and in some genes (like mine) Crohn's and PF. There is very likely an auto-immune connection, but it isn't well understood yet.

I am pretty lucky so far. I was diagnosed with HPS (for all practical purposes, again, long story) in 2002 and with PF in 2006. In 2002 they told me I had five years, maybe seven if I was really, really lucky. Today I'm in a drug trial for PF. I don't know if I'm getting the real stuff or not - but my FVC has gone up 20 points and DLCO has gone up 10 - so I'm doing way better than anyone could have ever predicted.

I only say that because five years ago it was all so gloom and doom and hopeless.

The frustrating thing with all the research underway is that it just can't happen soon enough or fast enough. I want it, and I want it NOW! Grin!

This is a very loving group and I'm sure you'll find lots of support here.

Hermansky-Pudlak Syndrome/PF 06

www.heatherkirkwood.blogspot.com

>> Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on> Thursday...however have been experiencing strong symptoms and begging> the Dr's. to take me seriously for the past 5 months. I live in an> extremely small town in N.B., Canada, so to get scheduled for tests> and procedures, it seems like you have to wait an eternity! *sigh* I> have a very complicated medical history and so I at least know that my> PF is NOT the IPF variety, as I know mine is related to my autoimmune> disease. In 2001, when I was 28, I was diagnosed with the autoimmune> disease, Polymyositis and I also tested positive for the anti JO-1> antibody. Apparently this antibody means that you have a very high> chance at getting an ILD. I was also diagnosed with Sjogrens Syndrome> and Raynauds Phenomenon during this time. Immediately prior to> getting diagnosed with the above, I had 2 blood clots in my left leg> and 3 blood clots in my lungs, therefore, I am now taking Warfarin for> life. I've also had Asthma since childhood. That's my medical history> in a nutshell. Over the past 5 months, I haven't been able to breathe> doing the simplest of tasks, such as bathing (that's the worst!),> getting dressed or changed, and sometimes even brushing my teeth or> washing my face. I have this intense burning in my chest when I> inhale and it just about kills me to yawn, because of that burning> sensation (all my Dr.'s would do is lecture me about GERD when I> talked to them about this but I knew it had nothing to do with GERD> since my GERD is very well controlled. It was finally a CT Scan that> I had done 2 weeks ago that apparently confirmed my PF diagnosis and> apparently I am at the "early stage". I have seen my Pulmonologist> once previous to having my CT Scan done and I will see him again but I> am waiting to have a 2nd set of Pulmonary Function test performed> (along with blood gases), as well as an Echocardiogram done. When my> GP told me my diagnosis on Thursday, she basically told me the news as> if she were diagnosing me with the common cold. It was very matter of> fact (and dare I say chipper?) and she sent me out the door. Of> course I didn't know what it was she was talking about so I was> absolutely fine then and there but once I got home and did some> research and let the news register, I got REALLY upset at the way she> told me. We've had an awesome relationship over the past 15 years and> I just can't believe that she wouldn't have more sympathy than that!!?> To be perfectly honest, I'm feeling quite hopeless. Is this as bad as> I think it is?? I know you all are in the same boat as I am and> probably have had to deal with all the ugliness this disease brings> for far too long and I'm so sorry I had to find you this way!! > However, I desperately need your support right now and all the advice> that you have to offer. Thankyou!> > Dawn, 34, married, mother of 2 girls, ages 11 & 9>

[Guest guest]

Dawn, Welcome to the group. Sorry that

you need us but glad you found us!

You are so young to be dealing with this mess and still in the midst of

raising your children as well.

There are several mommies here. They will chime in I'm certain

..

My 3 grown kids are married and my daughter is due anyday now!!!

We're waiting for grandchild #2.

This group is comprised of people of many ages. places and forms of PF.

We all "get it".

So, use us to vent, laugh and share.

Z fibriotic NSIP/05

Z

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

Potter,

reader,carousel lover and MomMom to

Darah

“I’m gonna

be iron like a lion in Zion” Bob Marley

pm_dawn73 wrote:

Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on

Thursday...however have been experiencing strong symptoms and begging

the Dr's. to take me seriously for the past 5 months. I live in an

extremely small town in N.B., Canada, so to get scheduled for tests

and procedures, it seems like you have to wait an eternity! *sigh* I

have a very complicated medical history and so I at least know that my

PF is NOT the IPF variety, as I know mine is related to my autoimmune

disease. In 2001, when I was 28, I was diagnosed with the autoimmune

disease, Polymyositis and I also tested positive for the anti JO-1

antibody. Apparently this antibody means that you have a very high

chance at getting an ILD. I was also diagnosed with Sjogrens Syndrome

and Raynauds Phenomenon during this time. Immediately prior to

getting diagnosed with the above, I had 2 blood clots in my left leg

and 3 blood clots in my lungs, therefore, I am now taking Warfarin for

life. I've also had Asthma since childhood. That's my medical history

in a nutshell. Over the past 5 months, I haven't been able to breathe

doing the simplest of tasks, such as bathing (that's the worst!),

getting dressed or changed, and sometimes even brushing my teeth or

washing my face. I have this intense burning in my chest when I

inhale and it just about kills me to yawn, because of that burning

sensation (all my Dr.'s would do is lecture me about GERD when I

talked to them about this but I knew it had nothing to do with GERD

since my GERD is very well controlled. It was finally a CT Scan that

I had done 2 weeks ago that apparently confirmed my PF diagnosis and

apparently I am at the "early stage". I have seen my Pulmonologist

once previous to having my CT Scan done and I will see him again but I

am waiting to have a 2nd set of Pulmonary Function test performed

(along with blood gases), as well as an Echocardiogram done. When my

GP told me my diagnosis on Thursday, she basically told me the news as

if she were diagnosing me with the common cold. It was very matter of

fact (and dare I say chipper?) and she sent me out the door. Of

course I didn't know what it was she was talking about so I was

absolutely fine then and there but once I got home and did some

research and let the news register, I got REALLY upset at the way she

told me. We've had an awesome relationship over the past 15 years and

I just can't believe that she wouldn't have more sympathy than that!!?

To be perfectly honest, I'm feeling quite hopeless. Is this as bad as

I think it is?? I know you all are in the same boat as I am and

probably have had to deal with all the ugliness this disease brings

for far too long and I'm so sorry I had to find you this way!!

However, I desperately need your support right now and all the advice

that you have to offer. Thankyou!

Dawn, 34, married, mother of 2 girls, ages 11 & 9

No virus found in this incoming message.

Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.18/1255 - Release Date: 2/1/2008 9:59 AM

[Guest guest]

Hi Dawn. You are SO YOUNG. Welcome. We are sorry you have to be

here but glad you found the group. I've only been a member for a few

weeks and have found a great amount of support and many questions

answered. A lot of us have other diseases. I have 4 different auto-

immune diseases and waiting for the other shoe to drop on another one.

You might research Celiac disease since your doctors have jumped so

easily on GERD. Some of the pain I blamed on my lungs was Celiac, a

gluten intolerance. Yet another auto-immune disease. But the

symptoms are easily blamed on GERD by doctors who jump to easy

conclusions and don't want to spend the time or effort to look beyond

easy answers.

I'm sorry your doctor just brushed off your diagnosis. One of the

things I have learned is that sometimes they show their humanity and

frailty. Maybe it was just hard for the doc to give you the

diagnosis especially if you have been a long-time patient. Sometimes

they shut off emotion when it is hard to deal with. Or possibly the

doctor is a jerk - also a possibility. They aren't perfect just

because they have an MD.

Are you on oxygen? Surely you are. Please take care of yourself and

make people listen to you, doing whatever that takes.

S, Lubbock, TX

NSIP w/PF 2006, Celiac, Type II diabetic

>

> Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on

> Thursday...however have been experiencing strong symptoms and

begging

> the Dr's. to take me seriously for the past 5 months. I live in an

> extremely small town in N.B., Canada, so to get scheduled for tests

> and procedures, it seems like you have to wait an eternity!

*sigh* I

> have a very complicated medical history and so I at least know that

my

> PF is NOT the IPF variety, as I know mine is related to my

autoimmune

> disease. In 2001, when I was 28, I was diagnosed with the

autoimmune

> disease, Polymyositis and I also tested positive for the anti JO-1

> antibody. Apparently this antibody means that you have a very high

> chance at getting an ILD. I was also diagnosed with Sjogrens

Syndrome

> and Raynauds Phenomenon during this time. Immediately prior to

> getting diagnosed with the above, I had 2 blood clots in my left leg

> and 3 blood clots in my lungs, therefore, I am now taking Warfarin

for

> life. I've also had Asthma since childhood. That's my medical

history

> in a nutshell. Over the past 5 months, I haven't been able to

breathe

> doing the simplest of tasks, such as bathing (that's the worst!),

> getting dressed or changed, and sometimes even brushing my teeth or

> washing my face. I have this intense burning in my chest when I

> inhale and it just about kills me to yawn, because of that burning

> sensation (all my Dr.'s would do is lecture me about GERD when I

> talked to them about this but I knew it had nothing to do with GERD

> since my GERD is very well controlled. It was finally a CT Scan

that

> I had done 2 weeks ago that apparently confirmed my PF diagnosis and

> apparently I am at the " early stage " . I have seen my Pulmonologist

> once previous to having my CT Scan done and I will see him again

but I

> am waiting to have a 2nd set of Pulmonary Function test performed

> (along with blood gases), as well as an Echocardiogram done. When

my

> GP told me my diagnosis on Thursday, she basically told me the news

as

> if she were diagnosing me with the common cold. It was very matter

of

> fact (and dare I say chipper?) and she sent me out the door. Of

> course I didn't know what it was she was talking about so I was

> absolutely fine then and there but once I got home and did some

> research and let the news register, I got REALLY upset at the way

she

> told me. We've had an awesome relationship over the past 15 years

and

> I just can't believe that she wouldn't have more sympathy than

that!!?

> To be perfectly honest, I'm feeling quite hopeless. Is this as bad

as

> I think it is?? I know you all are in the same boat as I am and

> probably have had to deal with all the ugliness this disease brings

> for far too long and I'm so sorry I had to find you this way!!

> However, I desperately need your support right now and all the

advice

> that you have to offer. Thankyou!

>

> Dawn, 34, married, mother of 2 girls, ages 11 & 9

>

[Guest guest]

Hi Dawn I am so sorry you had to find us also. My Dr.

also told me very coldly I had IPF, I also was stunned

and started reading on the internet about my decease.

Please dont believe everything you read.It really is

so scary what some sights say.You will find out from

this sight how we all are coping and we all are at

various stages. I have Raynauds and Sjogren also ,but

I plan to be around for a long time God willing .It

isnt hopeless they are looking for a cure and there

are lots of tests being done. Let just pray they find

it soon.Hug your girls and stay positive .

IPF 2/07 Il

--- pm_dawn73 wrote:

> Hello. My name is Dawn, I'm 34, and was just

> diagnosed with PF on

> Thursday...however have been experiencing strong

> symptoms and begging

> the Dr's. to take me seriously for the past 5

> months. I live in an

> extremely small town in N.B., Canada, so to get

> scheduled for tests

> and procedures, it seems like you have to wait an

> eternity! *sigh* I

> have a very complicated medical history and so I at

> least know that my

> PF is NOT the IPF variety, as I know mine is related

> to my autoimmune

> disease. In 2001, when I was 28, I was diagnosed

> with the autoimmune

> disease, Polymyositis and I also tested positive for

> the anti JO-1

> antibody. Apparently this antibody means that you

> have a very high

> chance at getting an ILD. I was also diagnosed with

> Sjogrens Syndrome

> and Raynauds Phenomenon during this time.

> Immediately prior to

> getting diagnosed with the above, I had 2 blood

> clots in my left leg

> and 3 blood clots in my lungs, therefore, I am now

> taking Warfarin for

> life. I've also had Asthma since childhood. That's

> my medical history

> in a nutshell. Over the past 5 months, I haven't

> been able to breathe

> doing the simplest of tasks, such as bathing (that's

> the worst!),

> getting dressed or changed, and sometimes even

> brushing my teeth or

> washing my face. I have this intense burning in my

> chest when I

> inhale and it just about kills me to yawn, because

> of that burning

> sensation (all my Dr.'s would do is lecture me about

> GERD when I

> talked to them about this but I knew it had nothing

> to do with GERD

> since my GERD is very well controlled. It was

> finally a CT Scan that

> I had done 2 weeks ago that apparently confirmed my

> PF diagnosis and

> apparently I am at the " early stage " . I have seen

> my Pulmonologist

> once previous to having my CT Scan done and I will

> see him again but I

> am waiting to have a 2nd set of Pulmonary Function

> test performed

> (along with blood gases), as well as an

> Echocardiogram done. When my

> GP told me my diagnosis on Thursday, she basically

> told me the news as

> if she were diagnosing me with the common cold. It

> was very matter of

> fact (and dare I say chipper?) and she sent me out

> the door. Of

> course I didn't know what it was she was talking

> about so I was

> absolutely fine then and there but once I got home

> and did some

> research and let the news register, I got REALLY

> upset at the way she

> told me. We've had an awesome relationship over the

> past 15 years and

> I just can't believe that she wouldn't have more

> sympathy than that!!?

> To be perfectly honest, I'm feeling quite hopeless.

> Is this as bad as

> I think it is?? I know you all are in the same boat

> as I am and

> probably have had to deal with all the ugliness this

> disease brings

> for far too long and I'm so sorry I had to find you

> this way!!

> However, I desperately need your support right now

> and all the advice

> that you have to offer. Thankyou!

>

> Dawn, 34, married, mother of 2 girls, ages 11 & 9

>

>

________________________________________________________________________________\

____

Never miss a thing. Make Yahoo your home page.

http://www.yahoo.com/r/hs

[Guest guest]

Dawn....meet Irene....boy way too many similarities in your two

stories. She's in Toronto but same doctor experiences, list of other

diseases, and PF as secondary. As to taking you seriously, that seems

common. She's not as active at the moment due to some of the medical

nightmares, but I think you'll find a lot of common experiences when

she's back at full speed. Shortness of breath you must have allergies

or sinuses or just be out of shape. And, a simple six minute walk

would tell them otherwise.

You'll certainly get all our support and feel free to ask questions,

to share experiences and to vent openly when you go through delays

and doctors who disappoint you. This is an anything goes, what we

feel, what we need to discuss kind of forum.

>

> Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on

> Thursday...however have been experiencing strong symptoms and

begging

> the Dr's. to take me seriously for the past 5 months. I live in an

> extremely small town in N.B., Canada, so to get scheduled for tests

> and procedures, it seems like you have to wait an eternity!

*sigh* I

> have a very complicated medical history and so I at least know that

my

> PF is NOT the IPF variety, as I know mine is related to my

autoimmune

> disease. In 2001, when I was 28, I was diagnosed with the

autoimmune

> disease, Polymyositis and I also tested positive for the anti JO-1

> antibody. Apparently this antibody means that you have a very high

> chance at getting an ILD. I was also diagnosed with Sjogrens

Syndrome

> and Raynauds Phenomenon during this time. Immediately prior to

> getting diagnosed with the above, I had 2 blood clots in my left leg

> and 3 blood clots in my lungs, therefore, I am now taking Warfarin

for

> life. I've also had Asthma since childhood. That's my medical

history

> in a nutshell. Over the past 5 months, I haven't been able to

breathe

> doing the simplest of tasks, such as bathing (that's the worst!),

> getting dressed or changed, and sometimes even brushing my teeth or

> washing my face. I have this intense burning in my chest when I

> inhale and it just about kills me to yawn, because of that burning

> sensation (all my Dr.'s would do is lecture me about GERD when I

> talked to them about this but I knew it had nothing to do with GERD

> since my GERD is very well controlled. It was finally a CT Scan

that

> I had done 2 weeks ago that apparently confirmed my PF diagnosis and

> apparently I am at the " early stage " . I have seen my Pulmonologist

> once previous to having my CT Scan done and I will see him again

but I

> am waiting to have a 2nd set of Pulmonary Function test performed

> (along with blood gases), as well as an Echocardiogram done. When

my

> GP told me my diagnosis on Thursday, she basically told me the news

as

> if she were diagnosing me with the common cold. It was very matter

of

> fact (and dare I say chipper?) and she sent me out the door. Of

> course I didn't know what it was she was talking about so I was

> absolutely fine then and there but once I got home and did some

> research and let the news register, I got REALLY upset at the way

she

> told me. We've had an awesome relationship over the past 15 years

and

> I just can't believe that she wouldn't have more sympathy than

that!!?

> To be perfectly honest, I'm feeling quite hopeless. Is this as bad

as

> I think it is?? I know you all are in the same boat as I am and

> probably have had to deal with all the ugliness this disease brings

> for far too long and I'm so sorry I had to find you this way!!

> However, I desperately need your support right now and all the

advice

> that you have to offer. Thankyou!

>

> Dawn, 34, married, mother of 2 girls, ages 11 & 9

>

[Guest guest]

Dawn

Also, I failed to mention that Diane is from N.B. and although I

have no idea if you are close, she has had good experiences with her

medical treatment so may be able to point you in the direction of

some doctors and facilities that have worked better for her.

> >

> > Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on

> > Thursday...however have been experiencing strong symptoms and

> begging

> > the Dr's. to take me seriously for the past 5 months. I live in

an

> > extremely small town in N.B., Canada, so to get scheduled for

tests

> > and procedures, it seems like you have to wait an eternity!

> *sigh* I

> > have a very complicated medical history and so I at least know

that

> my

> > PF is NOT the IPF variety, as I know mine is related to my

> autoimmune

> > disease. In 2001, when I was 28, I was diagnosed with the

> autoimmune

> > disease, Polymyositis and I also tested positive for the anti JO-1

> > antibody. Apparently this antibody means that you have a very

high

> > chance at getting an ILD. I was also diagnosed with Sjogrens

> Syndrome

> > and Raynauds Phenomenon during this time. Immediately prior to

> > getting diagnosed with the above, I had 2 blood clots in my left

leg

> > and 3 blood clots in my lungs, therefore, I am now taking

Warfarin

> for

> > life. I've also had Asthma since childhood. That's my medical

> history

> > in a nutshell. Over the past 5 months, I haven't been able to

> breathe

> > doing the simplest of tasks, such as bathing (that's the worst!),

> > getting dressed or changed, and sometimes even brushing my teeth

or

> > washing my face. I have this intense burning in my chest when I

> > inhale and it just about kills me to yawn, because of that burning

> > sensation (all my Dr.'s would do is lecture me about GERD when I

> > talked to them about this but I knew it had nothing to do with

GERD

> > since my GERD is very well controlled. It was finally a CT Scan

> that

> > I had done 2 weeks ago that apparently confirmed my PF diagnosis

and

> > apparently I am at the " early stage " . I have seen my

Pulmonologist

> > once previous to having my CT Scan done and I will see him again

> but I

> > am waiting to have a 2nd set of Pulmonary Function test performed

> > (along with blood gases), as well as an Echocardiogram done.

When

> my

> > GP told me my diagnosis on Thursday, she basically told me the

news

> as

> > if she were diagnosing me with the common cold. It was very

matter

> of

> > fact (and dare I say chipper?) and she sent me out the door. Of

> > course I didn't know what it was she was talking about so I was

> > absolutely fine then and there but once I got home and did some

> > research and let the news register, I got REALLY upset at the way

> she

> > told me. We've had an awesome relationship over the past 15

years

> and

> > I just can't believe that she wouldn't have more sympathy than

> that!!?

> > To be perfectly honest, I'm feeling quite hopeless. Is this as

bad

> as

> > I think it is?? I know you all are in the same boat as I am and

> > probably have had to deal with all the ugliness this disease

brings

> > for far too long and I'm so sorry I had to find you this way!!

> > However, I desperately need your support right now and all the

> advice

> > that you have to offer. Thankyou!

> >

> > Dawn, 34, married, mother of 2 girls, ages 11 & 9

> >

>

[Guest guest]

Hello Dawn

Have a welcome from across the pond, but I'm sorry that you had to find us. I'm 38 and I also have the Jo1 antibody, with dermatomyositis. I was diagnosed when I was 25 after being rushed into hospital with pulmonary embolism. I was diagnosed with PF 10 or so years ago. Only in the last year have I got into a position where I need oxygen at home, and I am about to undergo tests to see if I am viable for a transplant. I am also on warfarin as I have anticardio-lipid/antiphospho-lipins which led to the embolisms.

This is a wonderful bunch, we all 'get it' we all have down days as well as up days. Feel free to rant and rave, and please don't feel like you have to hold back your own feelings incase you upset one of us. We GET IT . And boy, do they catch you when you do fall!

Love Ze xx>> Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on> Thursday...however have been experiencing strong symptoms and begging> the Dr's. to take me seriously for the past 5 months. I live in an> extremely small town in N.B., Canada, so to get scheduled for tests> and procedures, it seems like you have to wait an eternity! *sigh* I> have a very complicated medical history and so I at least know that my> PF is NOT the IPF variety, as I know mine is related to my autoimmune> disease. In 2001, when I was 28, I was diagnosed with the autoimmune> disease, Polymyositis and I also tested positive for the anti JO-1> antibody. Apparently this antibody means that you have a very high> chance at getting an ILD. I was also diagnosed with Sjogrens Syndrome> and Raynauds Phenomenon during this time. Immediately prior to> getting diagnosed with the above, I had 2 blood clots in my left leg> and 3 blood clots in my lungs, therefore, I am now taking Warfarin for> life. I've also had Asthma since childhood. That's my medical history> in a nutshell. Over the past 5 months, I haven't been able to breathe> doing the simplest of tasks, such as bathing (that's the worst!),> getting dressed or changed, and sometimes even brushing my teeth or> washing my face. I have this intense burning in my chest when I> inhale and it just about kills me to yawn, because of that burning> sensation (all my Dr.'s would do is lecture me about GERD when I> talked to them about this but I knew it had nothing to do with GERD> since my GERD is very well controlled. It was finally a CT Scan that> I had done 2 weeks ago that apparently confirmed my PF diagnosis and> apparently I am at the "early stage". I have seen my Pulmonologist> once previous to having my CT Scan done and I will see him again but I> am waiting to have a 2nd set of Pulmonary Function test performed> (along with blood gases), as well as an Echocardiogram done. When my> GP told me my diagnosis on Thursday, she basically told me the news as> if she were diagnosing me with the common cold. It was very matter of> fact (and dare I say chipper?) and she sent me out the door. Of> course I didn't know what it was she was talking about so I was> absolutely fine then and there but once I got home and did some> research and let the news register, I got REALLY upset at the way she> told me. We've had an awesome relationship over the past 15 years and> I just can't believe that she wouldn't have more sympathy than that!!?> To be perfectly honest, I'm feeling quite hopeless. Is this as bad as> I think it is?? I know you all are in the same boat as I am and> probably have had to deal with all the ugliness this disease brings> for far too long and I'm so sorry I had to find you this way!! > However, I desperately need your support right now and all the advice> that you have to offer. Thankyou!> > Dawn, 34, married, mother of 2 girls, ages 11 & 9>

[Guest guest]

Dawn,

Reading your post immediately brings to mind a link I received from

a wonderful member of this group, . The link is to a website

detailing the journey of a woman who's has a lot in common w/ you.

Check it out. http://www.lenorsjourney.com/

Kerry

IPF '01

S. IN

>

> Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on

> Thursday...however have been experiencing strong symptoms and

begging

> the Dr's. to take me seriously for the past 5 months. I live in an

> extremely small town in N.B., Canada, so to get scheduled for tests

> and procedures, it seems like you have to wait an eternity!

*sigh* I

> have a very complicated medical history and so I at least know

that my

> PF is NOT the IPF variety, as I know mine is related to my

autoimmune

> disease. In 2001, when I was 28, I was diagnosed with the

autoimmune

> disease, Polymyositis and I also tested positive for the anti JO-1

> antibody. Apparently this antibody means that you have a very high

> chance at getting an ILD. I was also diagnosed with Sjogrens

Syndrome

> and Raynauds Phenomenon during this time. Immediately prior to

> getting diagnosed with the above, I had 2 blood clots in my left

leg

> and 3 blood clots in my lungs, therefore, I am now taking Warfarin

for

> life. I've also had Asthma since childhood. That's my medical

history

> in a nutshell. Over the past 5 months, I haven't been able to

breathe

> doing the simplest of tasks, such as bathing (that's the worst!),

> getting dressed or changed, and sometimes even brushing my teeth or

> washing my face. I have this intense burning in my chest when I

> inhale and it just about kills me to yawn, because of that burning

> sensation (all my Dr.'s would do is lecture me about GERD when I

> talked to them about this but I knew it had nothing to do with GERD

> since my GERD is very well controlled. It was finally a CT Scan

that

> I had done 2 weeks ago that apparently confirmed my PF diagnosis

and

> apparently I am at the " early stage " . I have seen my Pulmonologist

> once previous to having my CT Scan done and I will see him again

but I

> am waiting to have a 2nd set of Pulmonary Function test performed

> (along with blood gases), as well as an Echocardiogram done. When

my

> GP told me my diagnosis on Thursday, she basically told me the

news as

> if she were diagnosing me with the common cold. It was very

matter of

> fact (and dare I say chipper?) and she sent me out the door. Of

> course I didn't know what it was she was talking about so I was

> absolutely fine then and there but once I got home and did some

> research and let the news register, I got REALLY upset at the way

she

> told me. We've had an awesome relationship over the past 15 years

and

> I just can't believe that she wouldn't have more sympathy than

that!!?

> To be perfectly honest, I'm feeling quite hopeless. Is this as

bad as

> I think it is?? I know you all are in the same boat as I am and

> probably have had to deal with all the ugliness this disease brings

> for far too long and I'm so sorry I had to find you this way!!

> However, I desperately need your support right now and all the

advice

> that you have to offer. Thankyou!

>

> Dawn, 34, married, mother of 2 girls, ages 11 & 9

>

[Guest guest]

Hi . Nice " meeting " you. I'm sure I'll be saying that a lot

over the next several days. ) So, we're the same age, eh? Do you

have a family? Kids? I used to work as an Insurance Agent, however,

have been on Disability since getting diagnosed with my Polymyositis

in 2001 (well, didn't actually get approved for the Disability until

Aug./2003....lots of red tape to go through. LOL!) Thankyou for

sharing your story with me, however, I'm sorry to say I didn't

understand most of your abbreviations. This is all so new to me, I'm

afraid. I just knew the abbreviation for PF and that's about it!

LOL! However, it sure sounds like you have your fair share of health

concerns, as well....as I'm sure most others do in this group as well

(or else they wouldn't be here, right?) I look forward to getting to

know you more.

Dawn

P.S. Would your middle name happen to be Dawn, btw? )

> >

> > Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on

> > Thursday...however have been experiencing strong symptoms and begging

> > the Dr's. to take me seriously for the past 5 months. I live in an

> > extremely small town in N.B., Canada, so to get scheduled for tests

> > and procedures, it seems like you have to wait an eternity! *sigh* I

> > have a very complicated medical history and so I at least know that my

> > PF is NOT the IPF variety, as I know mine is related to my autoimmune

> > disease. In 2001, when I was 28, I was diagnosed with the autoimmune

> > disease, Polymyositis and I also tested positive for the anti JO-1

> > antibody. Apparently this antibody means that you have a very high

> > chance at getting an ILD. I was also diagnosed with Sjogrens Syndrome

> > and Raynauds Phenomenon during this time. Immediately prior to

> > getting diagnosed with the above, I had 2 blood clots in my left leg

> > and 3 blood clots in my lungs, therefore, I am now taking Warfarin for

> > life. I've also had Asthma since childhood. That's my medical history

> > in a nutshell. Over the past 5 months, I haven't been able to breathe

> > doing the simplest of tasks, such as bathing (that's the worst!),

> > getting dressed or changed, and sometimes even brushing my teeth or

> > washing my face. I have this intense burning in my chest when I

> > inhale and it just about kills me to yawn, because of that burning

> > sensation (all my Dr.'s would do is lecture me about GERD when I

> > talked to them about this but I knew it had nothing to do with GERD

> > since my GERD is very well controlled. It was finally a CT Scan that

> > I had done 2 weeks ago that apparently confirmed my PF diagnosis and

> > apparently I am at the " early stage " . I have seen my Pulmonologist

> > once previous to having my CT Scan done and I will see him again but I

> > am waiting to have a 2nd set of Pulmonary Function test performed

> > (along with blood gases), as well as an Echocardiogram done. When my

> > GP told me my diagnosis on Thursday, she basically told me the news as

> > if she were diagnosing me with the common cold. It was very matter of

> > fact (and dare I say chipper?) and she sent me out the door. Of

> > course I didn't know what it was she was talking about so I was

> > absolutely fine then and there but once I got home and did some

> > research and let the news register, I got REALLY upset at the way she

> > told me. We've had an awesome relationship over the past 15 years and

> > I just can't believe that she wouldn't have more sympathy than that!!?

> > To be perfectly honest, I'm feeling quite hopeless. Is this as bad as

> > I think it is?? I know you all are in the same boat as I am and

> > probably have had to deal with all the ugliness this disease brings

> > for far too long and I'm so sorry I had to find you this way!!

> > However, I desperately need your support right now and all the advice

> > that you have to offer. Thankyou!

> >

> > Dawn, 34, married, mother of 2 girls, ages 11 & 9

> >

>

[Guest guest]

Hi . Thankyou for the warm welcome. Congratulations on your

soon-to-be new grandbaby. How exciting for you! Again, I'm sorry to

say that I don't understand the abbreviations. I feel stupid! LOL! I

know I'll soon learn, I'm sure! I too am sorry that I had to meet you

all this way, but knew that I needed a support group of some kind.

What better way to learn than from others experiencing the same things

that we are, right??

Dawn

>

> > Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on

> > Thursday...however have been experiencing strong symptoms and begging

> > the Dr's. to take me seriously for the past 5 months. I live in an

> > extremely small town in N.B., Canada, so to get scheduled for tests

> > and procedures, it seems like you have to wait an eternity! *sigh* I

> > have a very complicated medical history and so I at least know that my

> > PF is NOT the IPF variety, as I know mine is related to my autoimmune

> > disease. In 2001, when I was 28, I was diagnosed with the autoimmune

> > disease, Polymyositis and I also tested positive for the anti JO-1

> > antibody. Apparently this antibody means that you have a very high

> > chance at getting an ILD. I was also diagnosed with Sjogrens Syndrome

> > and Raynauds Phenomenon during this time. Immediately prior to

> > getting diagnosed with the above, I had 2 blood clots in my left leg

> > and 3 blood clots in my lungs, therefore, I am now taking Warfarin for

> > life. I've also had Asthma since childhood. That's my medical history

> > in a nutshell. Over the past 5 months, I haven't been able to breathe

> > doing the simplest of tasks, such as bathing (that's the worst!),

> > getting dressed or changed, and sometimes even brushing my teeth or

> > washing my face. I have this intense burning in my chest when I

> > inhale and it just about kills me to yawn, because of that burning

> > sensation (all my Dr.'s would do is lecture me about GERD when I

> > talked to them about this but I knew it had nothing to do with GERD

> > since my GERD is very well controlled. It was finally a CT Scan that

> > I had done 2 weeks ago that apparently confirmed my PF diagnosis and

> > apparently I am at the " early stage " . I have seen my Pulmonologist

> > once previous to having my CT Scan done and I will see him again but I

> > am waiting to have a 2nd set of Pulmonary Function test performed

> > (along with blood gases), as well as an Echocardiogram done. When my

> > GP told me my diagnosis on Thursday, she basically told me the news as

> > if she were diagnosing me with the common cold. It was very matter of

> > fact (and dare I say chipper?) and she sent me out the door. Of

> > course I didn't know what it was she was talking about so I was

> > absolutely fine then and there but once I got home and did some

> > research and let the news register, I got REALLY upset at the way she

> > told me. We've had an awesome relationship over the past 15 years and

> > I just can't believe that she wouldn't have more sympathy than that!!?

> > To be perfectly honest, I'm feeling quite hopeless. Is this as bad as

> > I think it is?? I know you all are in the same boat as I am and

> > probably have had to deal with all the ugliness this disease brings

> > for far too long and I'm so sorry I had to find you this way!!

> > However, I desperately need your support right now and all the advice

> > that you have to offer. Thankyou!

> >

> > Dawn, 34, married, mother of 2 girls, ages 11 & 9

> >

> >

> >

>

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

> >

> >No virus found in this incoming message.

> >Checked by AVG Free Edition.

> >Version: 7.5.516 / Virus Database: 269.19.18/1255 - Release Date:

2/1/2008 9:59 AM

> >

> >

>

[Guest guest]

Hi Dawn and welcome! I'm so sorry you had reason to seek us out but I'm happy you're here nonetheless. I'm older than you at 48 but you'll find all ages here including mom's caring for small children just like you.

It is all overwhelming but I hope the genuine support and caring you'll find here will ease your way. It has mine! These people are just the best bunch on the planet! They are like another family to me!

Beth in NC age 48 Fibrotic NSIP 06/06

"For as long as I shall live, I will testify to Love."

New member here

Hello. My name is Dawn, I'm 34, and was just diagnosed with PF onThursday...however have been experiencing strong symptoms and beggingthe Dr's. to take me seriously for the past 5 months. I live in anextremely small town in N.B., Canada, so to get scheduled for testsand procedures, it seems like you have to wait an eternity! *sigh* Ihave a very complicated medical history and so I at least know that myPF is NOT the IPF variety, as I know mine is related to my autoimmunedisease. In 2001, when I was 28, I was diagnosed with the autoimmunedisease, Polymyositis and I also tested positive for the anti JO-1antibody. Apparently this antibody means that you have a very highchance at getting an ILD. I was also diagnosed with Sjogrens Syndromeand Raynauds Phenomenon during this time. Immediately prior togetting diagnosed with the above, I had 2 blood clots in my left legand 3 blood clots in my lungs,

therefore, I am now taking Warfarin forlife. I've also had Asthma since childhood. That's my medical historyin a nutshell. Over the past 5 months, I haven't been able to breathedoing the simplest of tasks, such as bathing (that's the worst!),getting dressed or changed, and sometimes even brushing my teeth orwashing my face. I have this intense burning in my chest when Iinhale and it just about kills me to yawn, because of that burningsensation (all my Dr.'s would do is lecture me about GERD when Italked to them about this but I knew it had nothing to do with GERDsince my GERD is very well controlled. It was finally a CT Scan thatI had done 2 weeks ago that apparently confirmed my PF diagnosis andapparently I am at the "early stage". I have seen my Pulmonologistonce previous to having my CT Scan done and I will see him again but Iam waiting to have a 2nd set of Pulmonary Function test

performed(along with blood gases), as well as an Echocardiogram done. When myGP told me my diagnosis on Thursday, she basically told me the news asif she were diagnosing me with the common cold. It was very matter offact (and dare I say chipper?) and she sent me out the door. Ofcourse I didn't know what it was she was talking about so I wasabsolutely fine then and there but once I got home and did someresearch and let the news register, I got REALLY upset at the way shetold me. We've had an awesome relationship over the past 15 years andI just can't believe that she wouldn't have more sympathy than that!!?To be perfectly honest, I'm feeling quite hopeless. Is this as bad asI think it is?? I know you all are in the same boat as I am andprobably have had to deal with all the ugliness this disease bringsfor far too long and I'm so sorry I had to find you this way!! However, I desperately need your

support right now and all the advicethat you have to offer. Thankyou!Dawn, 34, married, mother of 2 girls, ages 11 & 9

[Guest guest]

Dawn:

I am so sorry that you have found it necessary to seek out this site but I am happy to see a fellow New Brunswicker. I was diagnosed in June of 2007 and found out my diagnosis when I was having a heart catheter performed. The cardiologist mentioned it and I had no idea what he was talking about. Imagine my surprise when I did the research. The folks on this board are a wealth of information. You just have to pick through and do what is best for you and your own situation. If you have any questions at all, don't hestitate to ask and you will receive many answers. Welcome.

Diane

IPF June 07New Brunswick, Canada

New member here

Hello. My name is Dawn, I'm 34, and was just diagnosed with PF onThursday...however have been experiencing strong symptoms and beggingthe Dr's. to take me seriously for the past 5 months. I live in anextremely small town in N.B., Canada, so to get scheduled for testsand procedures, it seems like you have to wait an eternity! *sigh* Ihave a very complicated medical history and so I at least know that myPF is NOT the IPF variety, as I know mine is related to my autoimmunedisease. In 2001, when I was 28, I was diagnosed with the autoimmunedisease, Polymyositis and I also tested positive for the anti JO-1antibody. Apparently this antibody means that you have a very highchance at getting an ILD. I was also diagnosed with Sjogrens Syndromeand Raynauds Phenomenon during this time. Immediately prior togetting diagnosed with the above, I had 2 blood clots in my left legand 3 blood clots in my lungs,

therefore, I am now taking Warfarin forlife. I've also had Asthma since childhood. That's my medical historyin a nutshell. Over the past 5 months, I haven't been able to breathedoing the simplest of tasks, such as bathing (that's the worst!),getting dressed or changed, and sometimes even brushing my teeth orwashing my face. I have this intense burning in my chest when Iinhale and it just about kills me to yawn, because of that burningsensation (all my Dr.'s would do is lecture me about GERD when Italked to them about this but I knew it had nothing to do with GERDsince my GERD is very well controlled. It was finally a CT Scan thatI had done 2 weeks ago that apparently confirmed my PF diagnosis andapparently I am at the "early stage". I have seen my Pulmonologistonce previous to having my CT Scan done and I will see him again but Iam waiting to have a 2nd set of Pulmonary Function test

performed(along with blood gases), as well as an Echocardiogram done. When myGP told me my diagnosis on Thursday, she basically told me the news asif she were diagnosing me with the common cold. It was very matter offact (and dare I say chipper?) and she sent me out the door. Ofcourse I didn't know what it was she was talking about so I wasabsolutely fine then and there but once I got home and did someresearch and let the news register, I got REALLY upset at the way shetold me. We've had an awesome relationship over the past 15 years andI just can't believe that she wouldn't have more sympathy than that!!?To be perfectly honest, I'm feeling quite hopeless. Is this as bad asI think it is?? I know you all are in the same boat as I am andprobably have had to deal with all the ugliness this disease bringsfor far too long and I'm so sorry I had to find you this way!! However, I desperately need your

support right now and all the advicethat you have to offer. Thankyou!Dawn, 34, married, mother of 2 girls, ages 11 & 9

Looking for the perfect gift? Give the gift of Flickr!

[Guest guest]

Hi S. ) No, I am not on oxygen. I was just diagnosed this

past Thursday, so I'm sure there will be lots of testing to determine

whether or not I will require it yet. I haven't even spoken to my

Pulmonary Dr. yet to find out the severity of my PF....just that it's

at the early stage, according to what my GP told me. So, I guess

that's good news! I had one PF test done a couple months ago and I'm

just waiting to get a call (hopefully this week) to have another one

done where I think they will have me walking around and they will also

take my blood gases (ouch! I always hated that!!), as well as an

Echocardiogram to determine if there is any damage to my heart. He

feels there might be, but I'm not going to worry about that until I

need to! I have never been tested for celiac disease, however, do

know that I suffer from GERD. That's something to consider, I guess.

Thanks for the info.! I appreciate your warm welcome and look

forward to getting to know you.

Thanks,

Dawn

> >

> > Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on

> > Thursday...however have been experiencing strong symptoms and

> begging

> > the Dr's. to take me seriously for the past 5 months. I live in an

> > extremely small town in N.B., Canada, so to get scheduled for tests

> > and procedures, it seems like you have to wait an eternity!

> *sigh* I

> > have a very complicated medical history and so I at least know that

> my

> > PF is NOT the IPF variety, as I know mine is related to my

> autoimmune

> > disease. In 2001, when I was 28, I was diagnosed with the

> autoimmune

> > disease, Polymyositis and I also tested positive for the anti JO-1

> > antibody. Apparently this antibody means that you have a very high

> > chance at getting an ILD. I was also diagnosed with Sjogrens

> Syndrome

> > and Raynauds Phenomenon during this time. Immediately prior to

> > getting diagnosed with the above, I had 2 blood clots in my left leg

> > and 3 blood clots in my lungs, therefore, I am now taking Warfarin

> for

> > life. I've also had Asthma since childhood. That's my medical

> history

> > in a nutshell. Over the past 5 months, I haven't been able to

> breathe

> > doing the simplest of tasks, such as bathing (that's the worst!),

> > getting dressed or changed, and sometimes even brushing my teeth or

> > washing my face. I have this intense burning in my chest when I

> > inhale and it just about kills me to yawn, because of that burning

> > sensation (all my Dr.'s would do is lecture me about GERD when I

> > talked to them about this but I knew it had nothing to do with GERD

> > since my GERD is very well controlled. It was finally a CT Scan

> that

> > I had done 2 weeks ago that apparently confirmed my PF diagnosis and

> > apparently I am at the " early stage " . I have seen my Pulmonologist

> > once previous to having my CT Scan done and I will see him again

> but I

> > am waiting to have a 2nd set of Pulmonary Function test performed

> > (along with blood gases), as well as an Echocardiogram done. When

> my

> > GP told me my diagnosis on Thursday, she basically told me the news

> as

> > if she were diagnosing me with the common cold. It was very matter

> of

> > fact (and dare I say chipper?) and she sent me out the door. Of

> > course I didn't know what it was she was talking about so I was

> > absolutely fine then and there but once I got home and did some

> > research and let the news register, I got REALLY upset at the way

> she

> > told me. We've had an awesome relationship over the past 15 years

> and

> > I just can't believe that she wouldn't have more sympathy than

> that!!?

> > To be perfectly honest, I'm feeling quite hopeless. Is this as bad

> as

> > I think it is?? I know you all are in the same boat as I am and

> > probably have had to deal with all the ugliness this disease brings

> > for far too long and I'm so sorry I had to find you this way!!

> > However, I desperately need your support right now and all the

> advice

> > that you have to offer. Thankyou!

> >

> > Dawn, 34, married, mother of 2 girls, ages 11 & 9

> >

>

[Guest guest]

Hi ! Yes, I do plan on doing lots of praying, you better believe

that! LOL! However, I just can't help but wondering how much longer

I will be here for my family, as well. My mind just can't help but

wander sometimes. My husband, who always stays so strong for my

benefit, actually held me and cried with me in bed the other night

because in his words, he " can't do anything to fix this " . I felt so

badly but on the other hand, it comforted me to know that he could

finally express his feelings to me without thinking he had to keep

them all bottled up inside. I know he's hurting too!

I will keep everyone on this list in my prayers, as well. Looking

forward to getting to know you better! )

DAwn

>

> > Hello. My name is Dawn, I'm 34, and was just

> > diagnosed with PF on

> > Thursday...however have been experiencing strong

> > symptoms and begging

> > the Dr's. to take me seriously for the past 5

> > months. I live in an

> > extremely small town in N.B., Canada, so to get

> > scheduled for tests

> > and procedures, it seems like you have to wait an

> > eternity! *sigh* I

> > have a very complicated medical history and so I at

> > least know that my

> > PF is NOT the IPF variety, as I know mine is related

> > to my autoimmune

> > disease. In 2001, when I was 28, I was diagnosed

> > with the autoimmune

> > disease, Polymyositis and I also tested positive for

> > the anti JO-1

> > antibody. Apparently this antibody means that you

> > have a very high

> > chance at getting an ILD. I was also diagnosed with

> > Sjogrens Syndrome

> > and Raynauds Phenomenon during this time.

> > Immediately prior to

> > getting diagnosed with the above, I had 2 blood

> > clots in my left leg

> > and 3 blood clots in my lungs, therefore, I am now

> > taking Warfarin for

> > life. I've also had Asthma since childhood. That's

> > my medical history

> > in a nutshell. Over the past 5 months, I haven't

> > been able to breathe

> > doing the simplest of tasks, such as bathing (that's

> > the worst!),

> > getting dressed or changed, and sometimes even

> > brushing my teeth or

> > washing my face. I have this intense burning in my

> > chest when I

> > inhale and it just about kills me to yawn, because

> > of that burning

> > sensation (all my Dr.'s would do is lecture me about

> > GERD when I

> > talked to them about this but I knew it had nothing

> > to do with GERD

> > since my GERD is very well controlled. It was

> > finally a CT Scan that

> > I had done 2 weeks ago that apparently confirmed my

> > PF diagnosis and

> > apparently I am at the " early stage " . I have seen

> > my Pulmonologist

> > once previous to having my CT Scan done and I will

> > see him again but I

> > am waiting to have a 2nd set of Pulmonary Function

> > test performed

> > (along with blood gases), as well as an

> > Echocardiogram done. When my

> > GP told me my diagnosis on Thursday, she basically

> > told me the news as

> > if she were diagnosing me with the common cold. It

> > was very matter of

> > fact (and dare I say chipper?) and she sent me out

> > the door. Of

> > course I didn't know what it was she was talking

> > about so I was

> > absolutely fine then and there but once I got home

> > and did some

> > research and let the news register, I got REALLY

> > upset at the way she

> > told me. We've had an awesome relationship over the

> > past 15 years and

> > I just can't believe that she wouldn't have more

> > sympathy than that!!?

> > To be perfectly honest, I'm feeling quite hopeless.

> > Is this as bad as

> > I think it is?? I know you all are in the same boat

> > as I am and

> > probably have had to deal with all the ugliness this

> > disease brings

> > for far too long and I'm so sorry I had to find you

> > this way!!

> > However, I desperately need your support right now

> > and all the advice

> > that you have to offer. Thankyou!

> >

> > Dawn, 34, married, mother of 2 girls, ages 11 & 9

> >

> >

>

>

>

>

________________________________________________________________________________\

____

> Never miss a thing. Make Yahoo your home page.

> http://www.yahoo.com/r/hs

>

[Guest guest]

Hi Dawn

I am new too and got my bad news one day before you got yours, so I

won't be much help to you now, except to be a friend. I have always

been the care giver and now I am realizing how important it is to

have someone to hold your hand. While the doctor that told me was

very 'factual' he was a new doctor to me and I can very well see how

you would have expected more from a long term doctor. I think they

should never tell you when you are alone. It is horrible not to have

a family member to hold on to when you receive such news.

Welcome and wish you didn't need to be here.

Ann,65;IFP 01-08 NC

>

> Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on

> Thursday...however have been experiencing strong symptoms and

begging

> the Dr's. to take me seriously for the past 5 months. I live in an

> extremely small town in N.B., Canada, so to get scheduled for tests

> and procedures, it seems like you have to wait an eternity!

*sigh* I

> have a very complicated medical history and so I at least know that

my

> PF is NOT the IPF variety, as I know mine is related to my

autoimmune

> disease. In 2001, when I was 28, I was diagnosed with the

autoimmune

> disease, Polymyositis and I also tested positive for the anti JO-1

> antibody. Apparently this antibody means that you have a very high

> chance at getting an ILD. I was also diagnosed with Sjogrens

Syndrome

> and Raynauds Phenomenon during this time. Immediately prior to

> getting diagnosed with the above, I had 2 blood clots in my left leg

> and 3 blood clots in my lungs, therefore, I am now taking Warfarin

for

> life. I've also had Asthma since childhood. That's my medical

history

> in a nutshell. Over the past 5 months, I haven't been able to

breathe

> doing the simplest of tasks, such as bathing (that's the worst!),

> getting dressed or changed, and sometimes even brushing my teeth or

> washing my face. I have this intense burning in my chest when I

> inhale and it just about kills me to yawn, because of that burning

> sensation (all my Dr.'s would do is lecture me about GERD when I

> talked to them about this but I knew it had nothing to do with GERD

> since my GERD is very well controlled. It was finally a CT Scan

that

> I had done 2 weeks ago that apparently confirmed my PF diagnosis and

> apparently I am at the " early stage " . I have seen my Pulmonologist

> once previous to having my CT Scan done and I will see him again

but I

> am waiting to have a 2nd set of Pulmonary Function test performed

> (along with blood gases), as well as an Echocardiogram done. When

my

> GP told me my diagnosis on Thursday, she basically told me the news

as

> if she were diagnosing me with the common cold. It was very matter

of

> fact (and dare I say chipper?) and she sent me out the door. Of

> course I didn't know what it was she was talking about so I was

> absolutely fine then and there but once I got home and did some

> research and let the news register, I got REALLY upset at the way

she

> told me. We've had an awesome relationship over the past 15 years

and

> I just can't believe that she wouldn't have more sympathy than

that!!?

> To be perfectly honest, I'm feeling quite hopeless. Is this as bad

as

> I think it is?? I know you all are in the same boat as I am and

> probably have had to deal with all the ugliness this disease brings

> for far too long and I'm so sorry I had to find you this way!!

> However, I desperately need your support right now and all the

advice

> that you have to offer. Thankyou!

>

> Dawn, 34, married, mother of 2 girls, ages 11 & 9

>

[Guest guest]

Hi Bruce. Thanks...I look forward to " meeting " Irene when she gets

back on the boards. Man, a 6 minute walk would just about kill me.

Phew! The funny thing is with my GP, I've had this amazing

relationship with her these past 15 years and she's been a Godsend to

me, so the way she broke the news to me really has me stumped! She

was almost chipper in the way she said it and just kinda glossed over

it like it was no big deal. If I didn't know any better, it was

almost as if she didn't have a clue what it meant, but I know that

wasn't the case. I mean, I know lung conditions aren't her specialty,

but she IS Dr., for crying out loud. So, now my thinking is, she

MUST have been just trying to keep me calm and make it sound like it

was no big deal for my benefit. However....I've made up my mind that

when I go see her next, I'm going to come right out and ask her why

she didn't explain the PF diagnosis to me more and how she could be so

flippant when telling me I had it. This is MY life we're talking

about here!!! Thanks for listening to me vent....and sorry! I just

don't understand. It would have been the last thing I would have

expected from her...that's all!

Dawn

P.S....Not to mention....she never even called me into see her when

she got the results of my CT Scan showing the PF. I called and booked

an appointment with her because my breathing was getting progressively

worse and I wanted to see where we were going from here. It was when

she opened up my file that she saw the results of my CT Scan and THEN

told me my diagnosis!!!! ARGH!!!!! (

> >

> > Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on

> > Thursday...however have been experiencing strong symptoms and

> begging

> > the Dr's. to take me seriously for the past 5 months. I live in an

> > extremely small town in N.B., Canada, so to get scheduled for tests

> > and procedures, it seems like you have to wait an eternity!

> *sigh* I

> > have a very complicated medical history and so I at least know that

> my

> > PF is NOT the IPF variety, as I know mine is related to my

> autoimmune

> > disease. In 2001, when I was 28, I was diagnosed with the

> autoimmune

> > disease, Polymyositis and I also tested positive for the anti JO-1

> > antibody. Apparently this antibody means that you have a very high

> > chance at getting an ILD. I was also diagnosed with Sjogrens

> Syndrome

> > and Raynauds Phenomenon during this time. Immediately prior to

> > getting diagnosed with the above, I had 2 blood clots in my left leg

> > and 3 blood clots in my lungs, therefore, I am now taking Warfarin

> for

> > life. I've also had Asthma since childhood. That's my medical

> history

> > in a nutshell. Over the past 5 months, I haven't been able to

> breathe

> > doing the simplest of tasks, such as bathing (that's the worst!),

> > getting dressed or changed, and sometimes even brushing my teeth or

> > washing my face. I have this intense burning in my chest when I

> > inhale and it just about kills me to yawn, because of that burning

> > sensation (all my Dr.'s would do is lecture me about GERD when I

> > talked to them about this but I knew it had nothing to do with GERD

> > since my GERD is very well controlled. It was finally a CT Scan

> that

> > I had done 2 weeks ago that apparently confirmed my PF diagnosis and

> > apparently I am at the " early stage " . I have seen my Pulmonologist

> > once previous to having my CT Scan done and I will see him again

> but I

> > am waiting to have a 2nd set of Pulmonary Function test performed

> > (along with blood gases), as well as an Echocardiogram done. When

> my

> > GP told me my diagnosis on Thursday, she basically told me the news

> as

> > if she were diagnosing me with the common cold. It was very matter

> of

> > fact (and dare I say chipper?) and she sent me out the door. Of

> > course I didn't know what it was she was talking about so I was

> > absolutely fine then and there but once I got home and did some

> > research and let the news register, I got REALLY upset at the way

> she

> > told me. We've had an awesome relationship over the past 15 years

> and

> > I just can't believe that she wouldn't have more sympathy than

> that!!?

> > To be perfectly honest, I'm feeling quite hopeless. Is this as bad

> as

> > I think it is?? I know you all are in the same boat as I am and

> > probably have had to deal with all the ugliness this disease brings

> > for far too long and I'm so sorry I had to find you this way!!

> > However, I desperately need your support right now and all the

> advice

> > that you have to offer. Thankyou!

> >

> > Dawn, 34, married, mother of 2 girls, ages 11 & 9

> >

>

[Guest guest]

Ohhhh...interesting!!! I look forward to finding out where exactly in

N.B. she lives. Thankyou so much!

DAwn

> > >

> > > Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on

> > > Thursday...however have been experiencing strong symptoms and

> > begging

> > > the Dr's. to take me seriously for the past 5 months. I live in

> an

> > > extremely small town in N.B., Canada, so to get scheduled for

> tests

> > > and procedures, it seems like you have to wait an eternity!

> > *sigh* I

> > > have a very complicated medical history and so I at least know

> that

> > my

> > > PF is NOT the IPF variety, as I know mine is related to my

> > autoimmune

> > > disease. In 2001, when I was 28, I was diagnosed with the

> > autoimmune

> > > disease, Polymyositis and I also tested positive for the anti JO-1

> > > antibody. Apparently this antibody means that you have a very

> high

> > > chance at getting an ILD. I was also diagnosed with Sjogrens

> > Syndrome

> > > and Raynauds Phenomenon during this time. Immediately prior to

> > > getting diagnosed with the above, I had 2 blood clots in my left

> leg

> > > and 3 blood clots in my lungs, therefore, I am now taking

> Warfarin

> > for

> > > life. I've also had Asthma since childhood. That's my medical

> > history

> > > in a nutshell. Over the past 5 months, I haven't been able to

> > breathe

> > > doing the simplest of tasks, such as bathing (that's the worst!),

> > > getting dressed or changed, and sometimes even brushing my teeth

> or

> > > washing my face. I have this intense burning in my chest when I

> > > inhale and it just about kills me to yawn, because of that burning

> > > sensation (all my Dr.'s would do is lecture me about GERD when I

> > > talked to them about this but I knew it had nothing to do with

> GERD

> > > since my GERD is very well controlled. It was finally a CT Scan

> > that

> > > I had done 2 weeks ago that apparently confirmed my PF diagnosis

> and

> > > apparently I am at the " early stage " . I have seen my

> Pulmonologist

> > > once previous to having my CT Scan done and I will see him again

> > but I

> > > am waiting to have a 2nd set of Pulmonary Function test performed

> > > (along with blood gases), as well as an Echocardiogram done.

> When

> > my

> > > GP told me my diagnosis on Thursday, she basically told me the

> news

> > as

> > > if she were diagnosing me with the common cold. It was very

> matter

> > of

> > > fact (and dare I say chipper?) and she sent me out the door. Of

> > > course I didn't know what it was she was talking about so I was

> > > absolutely fine then and there but once I got home and did some

> > > research and let the news register, I got REALLY upset at the way

> > she

> > > told me. We've had an awesome relationship over the past 15

> years

> > and

> > > I just can't believe that she wouldn't have more sympathy than

> > that!!?

> > > To be perfectly honest, I'm feeling quite hopeless. Is this as

> bad

> > as

> > > I think it is?? I know you all are in the same boat as I am and

> > > probably have had to deal with all the ugliness this disease

> brings

> > > for far too long and I'm so sorry I had to find you this way!!

> > > However, I desperately need your support right now and all the

> > advice

> > > that you have to offer. Thankyou!

> > >

> > > Dawn, 34, married, mother of 2 girls, ages 11 & 9

> > >

> >

>

[Guest guest]

Hi Ze. Wow, our stories sure sound similar, don't they??! You could

be my medical twin! LOL! Only you were 3 years younger than I was

when you had your Pulmonary Embolism (and here I thought I was just a

baby! Ha!) My Dr's. have yet to determine the cause of all my blood

clots (personally, I don't think they tried very hard, if you ask me!)

but a Neurologist that I saw at McGill University in Montreal

basically summed it up that I have Lupus-type symptoms (although I

tested negative for Lupus) which caused the blood clots. That's about

as close as they came. Frustrating to say the least! You mentioned

yours were due to " anticardio-lipid/antiphospho-lipins " ....can you

tell me how this was determined? Is it found be a blood test?? I'm

just curious because I was thinking that I could request that I be

tested for that, as well. I even saw a Hematologist and he couldn't

come up with anything. Hmmmm! Do you just use your oxygen at home or

do you also require it when you go out? I have great difficulty at

night when I go to bed (but I'm fine once I get settled....after about

10-15 minutes) and after bathing, mainly. I can no longer do

housework either, but am soooooo fortunately that I have such a

wonderful husband that does so much for me around the house. I wonder

if I would qualify for someone to come in and help with the housework

though?? Sorry again for my ramblings. Thanks for listening though!

Dawn )

> >

> > Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on

> > Thursday...however have been experiencing strong symptoms and begging

> > the Dr's. to take me seriously for the past 5 months. I live in an

> > extremely small town in N.B., Canada, so to get scheduled for tests

> > and procedures, it seems like you have to wait an eternity! *sigh* I

> > have a very complicated medical history and so I at least know that my

> > PF is NOT the IPF variety, as I know mine is related to my autoimmune

> > disease. In 2001, when I was 28, I was diagnosed with the autoimmune

> > disease, Polymyositis and I also tested positive for the anti JO-1

> > antibody. Apparently this antibody means that you have a very high

> > chance at getting an ILD. I was also diagnosed with Sjogrens Syndrome

> > and Raynauds Phenomenon during this time. Immediately prior to

> > getting diagnosed with the above, I had 2 blood clots in my left leg

> > and 3 blood clots in my lungs, therefore, I am now taking Warfarin for

> > life. I've also had Asthma since childhood. That's my medical history

> > in a nutshell. Over the past 5 months, I haven't been able to breathe

> > doing the simplest of tasks, such as bathing (that's the worst!),

> > getting dressed or changed, and sometimes even brushing my teeth or

> > washing my face. I have this intense burning in my chest when I

> > inhale and it just about kills me to yawn, because of that burning

> > sensation (all my Dr.'s would do is lecture me about GERD when I

> > talked to them about this but I knew it had nothing to do with GERD

> > since my GERD is very well controlled. It was finally a CT Scan that

> > I had done 2 weeks ago that apparently confirmed my PF diagnosis and

> > apparently I am at the " early stage " . I have seen my Pulmonologist

> > once previous to having my CT Scan done and I will see him again but I

> > am waiting to have a 2nd set of Pulmonary Function test performed

> > (along with blood gases), as well as an Echocardiogram done. When my

> > GP told me my diagnosis on Thursday, she basically told me the news as

> > if she were diagnosing me with the common cold. It was very matter of

> > fact (and dare I say chipper?) and she sent me out the door. Of

> > course I didn't know what it was she was talking about so I was

> > absolutely fine then and there but once I got home and did some

> > research and let the news register, I got REALLY upset at the way she

> > told me. We've had an awesome relationship over the past 15 years and

> > I just can't believe that she wouldn't have more sympathy than that!!?

> > To be perfectly honest, I'm feeling quite hopeless. Is this as bad as

> > I think it is?? I know you all are in the same boat as I am and

> > probably have had to deal with all the ugliness this disease brings

> > for far too long and I'm so sorry I had to find you this way!!

> > However, I desperately need your support right now and all the advice

> > that you have to offer. Thankyou!

> >

> > Dawn, 34, married, mother of 2 girls, ages 11 & 9

> >

>

[Guest guest]

Thanks Kerry. For some reason, I'm unable to open it. I'll try again

later. Thanks for thinking of me though.......

Dawn

> >

> > Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on

> > Thursday...however have been experiencing strong symptoms and

> begging

> > the Dr's. to take me seriously for the past 5 months. I live in an

> > extremely small town in N.B., Canada, so to get scheduled for tests

> > and procedures, it seems like you have to wait an eternity!

> *sigh* I

> > have a very complicated medical history and so I at least know

> that my

> > PF is NOT the IPF variety, as I know mine is related to my

> autoimmune

> > disease. In 2001, when I was 28, I was diagnosed with the

> autoimmune

> > disease, Polymyositis and I also tested positive for the anti JO-1

> > antibody. Apparently this antibody means that you have a very high

> > chance at getting an ILD. I was also diagnosed with Sjogrens

> Syndrome

> > and Raynauds Phenomenon during this time. Immediately prior to

> > getting diagnosed with the above, I had 2 blood clots in my left

> leg

> > and 3 blood clots in my lungs, therefore, I am now taking Warfarin

> for

> > life. I've also had Asthma since childhood. That's my medical

> history

> > in a nutshell. Over the past 5 months, I haven't been able to

> breathe

> > doing the simplest of tasks, such as bathing (that's the worst!),

> > getting dressed or changed, and sometimes even brushing my teeth or

> > washing my face. I have this intense burning in my chest when I

> > inhale and it just about kills me to yawn, because of that burning

> > sensation (all my Dr.'s would do is lecture me about GERD when I

> > talked to them about this but I knew it had nothing to do with GERD

> > since my GERD is very well controlled. It was finally a CT Scan

> that

> > I had done 2 weeks ago that apparently confirmed my PF diagnosis

> and

> > apparently I am at the " early stage " . I have seen my Pulmonologist

> > once previous to having my CT Scan done and I will see him again

> but I

> > am waiting to have a 2nd set of Pulmonary Function test performed

> > (along with blood gases), as well as an Echocardiogram done. When

> my

> > GP told me my diagnosis on Thursday, she basically told me the

> news as

> > if she were diagnosing me with the common cold. It was very

> matter of

> > fact (and dare I say chipper?) and she sent me out the door. Of

> > course I didn't know what it was she was talking about so I was

> > absolutely fine then and there but once I got home and did some

> > research and let the news register, I got REALLY upset at the way

> she

> > told me. We've had an awesome relationship over the past 15 years

> and

> > I just can't believe that she wouldn't have more sympathy than

> that!!?

> > To be perfectly honest, I'm feeling quite hopeless. Is this as

> bad as

> > I think it is?? I know you all are in the same boat as I am and

> > probably have had to deal with all the ugliness this disease brings

> > for far too long and I'm so sorry I had to find you this way!!

> > However, I desperately need your support right now and all the

> advice

> > that you have to offer. Thankyou!

> >

> > Dawn, 34, married, mother of 2 girls, ages 11 & 9

> >

>

[Guest guest]

Hi Beth. I can tell already what a great bunch of people this is!

I appreciate all the warm welcomes and look forward to getting to

know you all better. Thanks so much!

Dawn

>

> Hi Dawn and welcome! I'm so sorry you had reason to seek us out but

I'm happy you're here nonetheless. I'm older than you at 48 but you'll

find all ages here including mom's caring for small children just like

you.

> It is all overwhelming but I hope the genuine support and caring

you'll find here will ease your way. It has mine! These people are

just the best bunch on the planet! They are like another family to me!

>

>

> Beth in NC age 48 Fibrotic NSIP 06/06

>

> " For as long as I shall live, I will testify to Love. "

>

>

>

>

>

> New member here

>

> Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on

> Thursday...however have been experiencing strong symptoms and begging

> the Dr's. to take me seriously for the past 5 months. I live in an

> extremely small town in N.B., Canada, so to get scheduled for tests

> and procedures, it seems like you have to wait an eternity! *sigh* I

> have a very complicated medical history and so I at least know that my

> PF is NOT the IPF variety, as I know mine is related to my autoimmune

> disease. In 2001, when I was 28, I was diagnosed with the autoimmune

> disease, Polymyositis and I also tested positive for the anti JO-1

> antibody. Apparently this antibody means that you have a very high

> chance at getting an ILD. I was also diagnosed with Sjogrens Syndrome

> and Raynauds Phenomenon during this time. Immediately prior to

> getting diagnosed with the above, I had 2 blood clots in my left leg

> and 3 blood clots in my lungs, therefore, I am now taking Warfarin for

> life. I've also had Asthma since childhood. That's my medical history

> in a nutshell. Over the past 5 months, I haven't been able to breathe

> doing the simplest of tasks, such as bathing (that's the worst!),

> getting dressed or changed, and sometimes even brushing my teeth or

> washing my face. I have this intense burning in my chest when I

> inhale and it just about kills me to yawn, because of that burning

> sensation (all my Dr.'s would do is lecture me about GERD when I

> talked to them about this but I knew it had nothing to do with GERD

> since my GERD is very well controlled. It was finally a CT Scan that

> I had done 2 weeks ago that apparently confirmed my PF diagnosis and

> apparently I am at the " early stage " . I have seen my Pulmonologist

> once previous to having my CT Scan done and I will see him again but I

> am waiting to have a 2nd set of Pulmonary Function test performed

> (along with blood gases), as well as an Echocardiogram done. When my

> GP told me my diagnosis on Thursday, she basically told me the news as

> if she were diagnosing me with the common cold. It was very matter of

> fact (and dare I say chipper?) and she sent me out the door. Of

> course I didn't know what it was she was talking about so I was

> absolutely fine then and there but once I got home and did some

> research and let the news register, I got REALLY upset at the way she

> told me. We've had an awesome relationship over the past 15 years and

> I just can't believe that she wouldn't have more sympathy than that!!?

> To be perfectly honest, I'm feeling quite hopeless. Is this as bad as

> I think it is?? I know you all are in the same boat as I am and

> probably have had to deal with all the ugliness this disease brings

> for far too long and I'm so sorry I had to find you this way!!

> However, I desperately need your support right now and all the advice

> that you have to offer. Thankyou!

>

> Dawn, 34, married, mother of 2 girls, ages 11 & 9

>

[Guest guest]

Ahhhhh....there's my fellow New Brunswicker! LOL! Where abouts in

N.B. are you, Diane? If you'd rather not say on the list, you

certainly can feel free to email me privately (and I will

reciprocate). I live in such a small area that I am worried that my

health care and follow up is not what it should be and that really

concerns me. I would love to know if we live close to each other at

all and if so, who your Dr. is because I have heard that you have had

good results with your health care.

It is, however, very unfortunate the way you found out about your IPF!

You must have been stunned to say the very least!! Was your heart

troubles related to your IPF?

Thanks again for the warm welcome!

Dawn

>

> Dawn:

>

> I am so sorry that you have found it necessary to seek out this site

but I am happy to see a fellow New Brunswicker. I was diagnosed in

June of 2007 and found out my diagnosis when I was having a heart

catheter performed. The cardiologist mentioned it and I had no idea

what he was talking about. Imagine my surprise when I did the

research. The folks on this board are a wealth of information. You

just have to pick through and do what is best for you and your own

situation. If you have any questions at all, don't hestitate to ask

and you will receive many answers. Welcome.

>

> Diane

> IPF June 07

> New Brunswick, Canada

>

>

>

> New member here

>

> Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on

> Thursday...however have been experiencing strong symptoms and begging

> the Dr's. to take me seriously for the past 5 months. I live in an

> extremely small town in N.B., Canada, so to get scheduled for tests

> and procedures, it seems like you have to wait an eternity! *sigh* I

> have a very complicated medical history and so I at least know that my

> PF is NOT the IPF variety, as I know mine is related to my autoimmune

> disease. In 2001, when I was 28, I was diagnosed with the autoimmune

> disease, Polymyositis and I also tested positive for the anti JO-1

> antibody. Apparently this antibody means that you have a very high

> chance at getting an ILD. I was also diagnosed with Sjogrens Syndrome

> and Raynauds Phenomenon during this time. Immediately prior to

> getting diagnosed with the above, I had 2 blood clots in my left leg

> and 3 blood clots in my lungs, therefore, I am now taking Warfarin for

> life. I've also had Asthma since childhood. That's my medical history

> in a nutshell. Over the past 5 months, I haven't been able to breathe

> doing the simplest of tasks, such as bathing (that's the worst!),

> getting dressed or changed, and sometimes even brushing my teeth or

> washing my face. I have this intense burning in my chest when I

> inhale and it just about kills me to yawn, because of that burning

> sensation (all my Dr.'s would do is lecture me about GERD when I

> talked to them about this but I knew it had nothing to do with GERD

> since my GERD is very well controlled. It was finally a CT Scan that

> I had done 2 weeks ago that apparently confirmed my PF diagnosis and

> apparently I am at the " early stage " . I have seen my Pulmonologist

> once previous to having my CT Scan done and I will see him again but I

> am waiting to have a 2nd set of Pulmonary Function test performed

> (along with blood gases), as well as an Echocardiogram done. When my

> GP told me my diagnosis on Thursday, she basically told me the news as

> if she were diagnosing me with the common cold. It was very matter of

> fact (and dare I say chipper?) and she sent me out the door. Of

> course I didn't know what it was she was talking about so I was

> absolutely fine then and there but once I got home and did some

> research and let the news register, I got REALLY upset at the way she

> told me. We've had an awesome relationship over the past 15 years and

> I just can't believe that she wouldn't have more sympathy than that!!?

> To be perfectly honest, I'm feeling quite hopeless. Is this as bad as

> I think it is?? I know you all are in the same boat as I am and

> probably have had to deal with all the ugliness this disease brings

> for far too long and I'm so sorry I had to find you this way!!

> However, I desperately need your support right now and all the advice

> that you have to offer. Thankyou!

>

> Dawn, 34, married, mother of 2 girls, ages 11 & 9

>

>

>

>

>

> Looking for the perfect gift? Give the gift of Flickr!

>

> http://www.flickr.com/gift/

>

[Guest guest]

Hi Ann. Well, I sure can use friends right about now, so I'll

take your offer! ) I tend to be an emotional person, so she was

probably doing what she thought was best, I guess. However...it

wasn't what I thought was best. I always go to my Dr's. appointments

alone, however, the truly ironic thing is that the week prior, my

husband ended up surprising me and showing up at my appointment

because he was so concerned about me and wanted to make sure that WE

as a unit got our point across to her about how much worse my

breathing was becoming. Little did I know, it was this last

appointment that I would have really needed him there with me.

Dawn

> >

> > Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on

> > Thursday...however have been experiencing strong symptoms and

> begging

> > the Dr's. to take me seriously for the past 5 months. I live in an

> > extremely small town in N.B., Canada, so to get scheduled for tests

> > and procedures, it seems like you have to wait an eternity!

> *sigh* I

> > have a very complicated medical history and so I at least know that

> my

> > PF is NOT the IPF variety, as I know mine is related to my

> autoimmune

> > disease. In 2001, when I was 28, I was diagnosed with the

> autoimmune

> > disease, Polymyositis and I also tested positive for the anti JO-1

> > antibody. Apparently this antibody means that you have a very high

> > chance at getting an ILD. I was also diagnosed with Sjogrens

> Syndrome

> > and Raynauds Phenomenon during this time. Immediately prior to

> > getting diagnosed with the above, I had 2 blood clots in my left leg

> > and 3 blood clots in my lungs, therefore, I am now taking Warfarin

> for

> > life. I've also had Asthma since childhood. That's my medical

> history

> > in a nutshell. Over the past 5 months, I haven't been able to

> breathe

> > doing the simplest of tasks, such as bathing (that's the worst!),

> > getting dressed or changed, and sometimes even brushing my teeth or

> > washing my face. I have this intense burning in my chest when I

> > inhale and it just about kills me to yawn, because of that burning

> > sensation (all my Dr.'s would do is lecture me about GERD when I

> > talked to them about this but I knew it had nothing to do with GERD

> > since my GERD is very well controlled. It was finally a CT Scan

> that

> > I had done 2 weeks ago that apparently confirmed my PF diagnosis and

> > apparently I am at the " early stage " . I have seen my Pulmonologist

> > once previous to having my CT Scan done and I will see him again

> but I

> > am waiting to have a 2nd set of Pulmonary Function test performed

> > (along with blood gases), as well as an Echocardiogram done. When

> my

> > GP told me my diagnosis on Thursday, she basically told me the news

> as

> > if she were diagnosing me with the common cold. It was very matter

> of

> > fact (and dare I say chipper?) and she sent me out the door. Of

> > course I didn't know what it was she was talking about so I was

> > absolutely fine then and there but once I got home and did some

> > research and let the news register, I got REALLY upset at the way

> she

> > told me. We've had an awesome relationship over the past 15 years

> and

> > I just can't believe that she wouldn't have more sympathy than

> that!!?

> > To be perfectly honest, I'm feeling quite hopeless. Is this as bad

> as

> > I think it is?? I know you all are in the same boat as I am and

> > probably have had to deal with all the ugliness this disease brings

> > for far too long and I'm so sorry I had to find you this way!!

> > However, I desperately need your support right now and all the

> advice

> > that you have to offer. Thankyou!

> >

> > Dawn, 34, married, mother of 2 girls, ages 11 & 9

> >

>

[Guest guest]

Diane....you're not going to believe this but I live in Centreville!!

We used to live in Woodstock and just moved to Centreville in Nov/05.

Can you believe what a small world this is??? For those that don't

know what we're talking about, Diane and I live about 25 minutes away

from each other and she works about 10 minutes away from where I live!

LOL! Who is your GP? Mine is Dr. O'Leary. My Pulmonary Dr. is Dr.

McMullin in F'ton but so far, I must say that I am NOT impressed!!!

He is also thinking there is heart involvement along with the PF and

is ordering a Echocardiogram ASAP. However, I'm not worrying about

that until the time comes. I don't know what the results of my PFT's

were like....just that they want to have them repeated....urgently

(hopefully this week).

Dawn

> >

> > Dawn:

> >

> > I am so sorry that you have found it necessary to seek out this site

> but I am happy to see a fellow New Brunswicker. I was diagnosed in

> June of 2007 and found out my diagnosis when I was having a heart

> catheter performed. The cardiologist mentioned it and I had no idea

> what he was talking about. Imagine my surprise when I did the

> research. The folks on this board are a wealth of information. You

> just have to pick through and do what is best for you and your own

> situation. If you have any questions at all, don't hestitate to ask

> and you will receive many answers. Welcome.

> >

> > Diane

> > IPF June 07

> > New Brunswick, Canada

> >

> >

> >

> > New member here

> >

> > Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on

> > Thursday...however have been experiencing strong symptoms and begging

> > the Dr's. to take me seriously for the past 5 months. I live in an

> > extremely small town in N.B., Canada, so to get scheduled for tests

> > and procedures, it seems like you have to wait an eternity! *sigh* I

> > have a very complicated medical history and so I at least know that my

> > PF is NOT the IPF variety, as I know mine is related to my autoimmune

> > disease. In 2001, when I was 28, I was diagnosed with the autoimmune

> > disease, Polymyositis and I also tested positive for the anti JO-1

> > antibody. Apparently this antibody means that you have a very high

> > chance at getting an ILD. I was also diagnosed with Sjogrens Syndrome

> > and Raynauds Phenomenon during this time. Immediately prior to

> > getting diagnosed with the above, I had 2 blood clots in my left leg

> > and 3 blood clots in my lungs, therefore, I am now taking Warfarin for

> > life. I've also had Asthma since childhood. That's my medical history

> > in a nutshell. Over the past 5 months, I haven't been able to breathe

> > doing the simplest of tasks, such as bathing (that's the worst!),

> > getting dressed or changed, and sometimes even brushing my teeth or

> > washing my face. I have this intense burning in my chest when I

> > inhale and it just about kills me to yawn, because of that burning

> > sensation (all my Dr.'s would do is lecture me about GERD when I

> > talked to them about this but I knew it had nothing to do with GERD

> > since my GERD is very well controlled. It was finally a CT Scan that

> > I had done 2 weeks ago that apparently confirmed my PF diagnosis and

> > apparently I am at the " early stage " . I have seen my Pulmonologist

> > once previous to having my CT Scan done and I will see him again but I

> > am waiting to have a 2nd set of Pulmonary Function test performed

> > (along with blood gases), as well as an Echocardiogram done. When my

> > GP told me my diagnosis on Thursday, she basically told me the news as

> > if she were diagnosing me with the common cold. It was very matter of

> > fact (and dare I say chipper?) and she sent me out the door. Of

> > course I didn't know what it was she was talking about so I was

> > absolutely fine then and there but once I got home and did some

> > research and let the news register, I got REALLY upset at the way she

> > told me. We've had an awesome relationship over the past 15 years and

> > I just can't believe that she wouldn't have more sympathy than that!!?

> > To be perfectly honest, I'm feeling quite hopeless. Is this as bad as

> > I think it is?? I know you all are in the same boat as I am and

> > probably have had to deal with all the ugliness this disease brings

> > for far too long and I'm so sorry I had to find you this way!!

> > However, I desperately need your support right now and all the advice

> > that you have to offer. Thankyou!

> >

> > Dawn, 34, married, mother of 2 girls, ages 11 & 9

> >

> >

> >

> >

> >

> > Looking for the perfect gift? Give the gift of Flickr!

> >

> > http://www.flickr. com/gift/

> >

>

>

>

>

>

> Looking for the perfect gift? Give the gift of Flickr!

>

> http://www.flickr.com/gift/

>

[Guest guest]

Dawn.... I haven't been posting for a small while and pop in to check on members who are "dealing" with heavy health issues. One of our members (Joyce) is currently in the hospital and very ill...

I have to take a wee break from the sadness of what we can face here on this board.

I was Dx (diagnosed) IPF 3-06 and have remained fairly stable. I'll be 70 this year and deal w/other chronic health problems like most of us.

You have been through a lot and you are quickly getting an education about our disease. You will learn more from this board.

We're all sorry to meet "this way" but it isn't long until we wonder how we could manage without each other!

I read your disappointment about your long-standing Dr. Is there a chance she was dealing with her own feelings? It has to be hard to tell a patient with which one has had "an awesome relationship" such staggering news. Don't throw the baby out with the bath water. Talk to her. I know you will be glad you did. You two have a history together but you will no doubt be seeing a pulmonologist regularly.

There are many other younger moms on the board, they will be posting you.

God bless.

Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there!

New member here

Hello. My name is Dawn, I'm 34, and was just diagnosed with PF onThursday...however have been experiencing strong symptoms and beggingthe Dr's. to take me seriously for the past 5 months. I live in anextremely small town in N.B., Canada, so to get scheduled for testsand procedures, it seems like you have to wait an eternity! *sigh* Ihave a very complicated medical history and so I at least know that myPF is NOT the IPF variety, as I know mine is related to my autoimmunedisease. In 2001, when I was 28, I was diagnosed with the autoimmunedisease, Polymyositis and I also tested positive for the anti JO-1antibody. Apparently this antibody means that you have a very highchance at getting an ILD. I was also diagnosed with Sjogrens Syndromeand Raynauds Phenomenon during this time. Immediately prior togetting diagnosed with the above, I had 2 blood clots in my left legand 3 blood clots in my lungs, therefore, I am now taking Warfarin forlife. I've also had Asthma since childhood. That's my medical historyin a nutshell. Over the past 5 months, I haven't been able to breathedoing the simplest of tasks, such as bathing (that's the worst!),getting dressed or changed, and sometimes even brushing my teeth orwashing my face. I have this intense burning in my chest when Iinhale and it just about kills me to yawn, because of that burningsensation (all my Dr.'s would do is lecture me about GERD when Italked to them about this but I knew it had nothing to do with GERDsince my GERD is very well controlled. It was finally a CT Scan thatI had done 2 weeks ago that apparently confirmed my PF diagnosis andapparently I am at the "early stage". I have seen my Pulmonologistonce previous to having my CT Scan done and I will see him again but Iam waiting to have a 2nd set of Pulmonary Function test performed(along with blood gases), as well as an Echocardiogram done. When myGP told me my diagnosis on Thursday, she basically told me the news asif she were diagnosing me with the common cold. It was very matter offact (and dare I say chipper?) and she sent me out the door. Ofcourse I didn't know what it was she was talking about so I wasabsolutely fine then and there but once I got home and did someresearch and let the news register, I got REALLY upset at the way shetold me. We've had an awesome relationship over the past 15 years andI just can't believe that she wouldn't have more sympathy than that!!?To be perfectly honest, I'm feeling quite hopeless. Is this as bad asI think it is?? I know you all are in the same boat as I am andprobably have had to deal with all the ugliness this disease bringsfor far too long and I'm so sorry I had to find you this way!! However, I desperately need your support right now and all the advicethat you have to offer. Thankyou!Dawn, 34, married, mother of 2 girls, ages 11 & 9