New member here

Report post · February 3, 2008

Well, if in the six minute walk your oxygen dropped too low then that

shows you need supplemental oxygen. Thats what it will indicate.

> > >

> > > 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

> > >

> >

>

Report post · February 3, 2008

Oh thats so great that you two are so close. I'll tell you as great

as the board is, being close and able to share more specifics is

incredible. And, you have to meet sometime. The first time you meet

someone with PF, who you've gotten to know here and can relate to

each other. Well, you won't believe how special it can be until you

do. Just a simple lunch turns wonderful.

> > >

> > > 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/

> >

>

Report post · February 3, 2008

Hi Sher. Nice meeting you. I'm sorry to hear that you too have many

health problems that you're facing as well. It does get to be a

burden at times, doesn't it. However, you do learn to cope. I am

sorry to hear about Joyce. I pray that she will get through this.

Dawn

>

> 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 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

>

Report post · February 3, 2008

Yes, Dr. O'Leary has been amazing throughout all my health issues (and

there has been many over the years!) so that's what has me stumped

about this past dx. of PF. Very strange, to say the least! I am

going to tell her I would like to be referred to Dr. Bishop. Dr.

McMullin didn't know the first thing about the JO-1 antibody that I

carry and that alone has me concerned. He actually didn't even want

to order this CT Scan...it was ME that kept insisting!!! I couldn't

breathe for 5 months for Pete's sakes!! *sigh* These Dr's., I swear!

I know Dr. McLaughlin is a fabulous Dr. and is very thorough, from

when I've encountered him.

My husband has asked me to ask you if you've recently had some

plumbing done to your house? He's a plumber and says that your name

sounds familiar....and thinks he might have done some work for you.

Getting together sometime sounds great. We'll have to set that up

sometime soon. Do you work full-time? How does that work out for

you? Don't you find that difficult?

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/

> >

>

> ____________________________________________________

> Yahoo! Canada Toolbar: Search from anywhere on the web, and bookmark

your favourite sites. Download it now at

> http://ca.toolbar.yahoo.com.

>

Report post · February 3, 2008

Yes, I can't wait!!! I was on a list for PM for years and would often

get 'jealous' when some of the women in California would all get

together for lunch, etc. After forming such friendships on the list,

I often longed to meet these people in person. Now that dream gets to

come true. I'm especially happy because all this is new to me (PF)

and I can pick Diane's brain!!! LOL!

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/

> > >

> >

>

Report post · February 3, 2008

Hi,

As far as I know it is simply a blood test to determine the anticardiolipin/antiphosphate. Joyce has a similar diagnosis to me and she has the anticardio-blah-blah bit too. Dermatomyositis and Lupus are both connective tissue disorders, so that may be why they talk about Lupus-type symptoms.

I'm on O2 all the time. After being stable for years my PF took a nose dive last year. I had several bouts of pneumonia/bronchitis etc, they finally put me in hospital, discovered that my O2 sats would not stay up despite there being no trace of infection after being pumped full of antibiotics. I have various different levels depending on what I'm doing. I hate the tubes, I hate being attached to a machine, I hate having to work out how long I'm going to be out so I can have enough O2 with me, but Oxygen is my friend. I do feel better on it, and I do get more done during the day. As I have a 5yo daughter to run round after this makes a big difference

The six minute walk test is just that. You start walking, they start timing. They measure how far you manage to walk, how long it takes you to make that distance, at what point you need to stop, how long you need to rest for (the resting is included in the 6 mins) and at the same time they measure your O2 saturation levels. If you're like me and don't get out of breath until your sats are quite low you will be told to stop and rest even if you don't feel like you need to. They use this test to determine how much supplimentary O2 you need, but it's not really an accurate measurement as you do different things at home.

Feel free to ramble all you like, I wouldn't know if you qualify for any home help as I'm in England and things are done differently. I'm not entitled to home help here as I am able to look after my personal hygiene without help and can fix dinner. I can't get the hoover around the house, but apparently it's ok to live in a pigsty so long as I can fix a sandwich

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> > >> >>

Report post · February 3, 2008

Hey there,

here from the " Left " coast. My daughter-in-law hails from

Canterbury, NB. Small world ladies.

Best to you all.

Peace.

UIP/LCH 5.06 CA

> > > >

> > > > 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/

> > >

> >

> > ____________________________________________________

> > Yahoo! Canada Toolbar: Search from anywhere on the web, and bookmark

> your favourite sites. Download it now at

> > http://ca.toolbar.yahoo.com.

> >

>

Report post · February 3, 2008

Dearest Mama-Sher,

So sorry to hear you're feeling looby-lou right now...anxiety about the

cataract surgery could be in the 'mix'....I know I'd be feaking out at

the thought of eye surgery of ANY description...there's something soooo

precious & delicate about 'eyes' the very thought of surgery there

leaves me COLD! That's why I've never considered laser treatment for my

long-term short sight even though I'd LOVE to ditch my specs!

You ( & Peggy before you!) are very courageous!

I'm thinking of you & hope that your surgery went smoothly....I'll

be waiting anxiously for news...take care, special woman who sends out

so much support to all of us in this special Air Family!

lots of love, care & concern,

in Oz

> >> > 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 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> >>

Report post · February 3, 2008

Mama Sher

Best of luck for tomorrow

Sending you much love and strength

Love Ze xx> >> > 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 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> >>

Report post · February 3, 2008

Yes, my middle name is Dawn! Grin. No, I don't have family or

children. I was engaged when I was diagnosed about about to move to

Hong Kong. My boyfriend was also a journalist and took a job as the

foreign editor of a paper there. I was to follow, and then I got this

diagnosis. The only place in the world with a clinical trial for HPS

was in Washington, so I had to make a choice.

Since then I haven't really dated much. Even though I'm stable and

doing well, it's hard to explain in the dating world. Instead, I've

put my energies into advocacy work for HPS and PF research etc.

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

> > >

> >

>

Report post · February 3, 2008

Oh Sista,

That's bad news...yucky cataract...YUKKY Prednisone!

GIO> > >> > > 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 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: 269.19.19/1256 - Release Date: 2/2/2008 1:50 PM> > > >>

Report post · February 3, 2008

The link to http://www.lenorsjo urney.com/ is very encouraging and a testament of living life to its fullest. And another example of how all our paths are different. Keep the faith! gigi ILD 3/07

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

Report post · February 4, 2008

Dawn, this is Babs, in Texas. I've been gone from the board for a few

days and just now read your post, so please forgive my slow response.

Like you, I was diagnosed young with PF. I was 39. And also like you,

I have auto-immune diseases....Lupus, Scleroderma, Rheumatoid

Arthritis, Dermatamyositis, Raynauds, Sjogrens......maybe Crohn's.

I'm sorry your GP seemed so blase about your diagnosis. This is a

serious disease and needs to be treated as such. Unfortunately a lot

of doctors don't know a lot about this disease and tend to stay

uninformed.

Here is what I have been told by 3 of my 5 pulmonologists that I have

seen in the past 8 years. PF caused by auto-immune diseases is not as

severe as IPF, and the patient can live many years longer than those

diagnosed with IPF.

That said, this disease follows it's own path, and there are no

guarantees.

I was given the prognosis as death occuring 5 to 10 years after

onset. I have NO clue when my onset was, so I could possibly be

living 10 years past their timeline. OR, I could be 8 years into the

10 they gave me. I don't know, and I daresay they don't either.

I'm now 47, will be 48 next October, and am only on 2 lpm of oxygen.

I can't tell you my numbers from my PFTs because I don't pay any

attention to them. My next tests will be in March and I will try to

pay better attention this time because I know others may benefit from

knowing them.

Please forgive your GP for being so ignorant. Many pulmonologists

don't know much about this disease either. My first Pulmo was

incredibly rude to me while telling me I was dying. No concern or

care on his face whatsoever.

Dawn, it can take a while for this all to sink in. I'm so sorry you

had to find this group, but at least you found a great place to glean

information while being given support. We've all been in your shoes

and know how hard this blow can be. I was in shock for months and not

being told much made it all that much more difficult to understand.

My first suggestion to you would be to ask about oxygen, and to drink

a lot of fluids and then ask a lot more questions....and try to

maintain some type of exercise program, with your doctors guidance.

I know others have already replied to your post, but being a fellow

AI disease sufferer I thought you might like to hear my

perspective....and I would like to say to you, take heart...you're no

longer alone.

Hugs and hugs!

Babs in Texas

>

> 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

>

Report post · February 4, 2008

I just haveta jump in here....my Chaz was devastated when I told him

the bad news. He wouldn't believe it until he heard it from my Pulmo.

She explained it all to him, and he told her that he would scour the

black market if he had to in order to find a lung for me!!! LOL!!!

OMG!!! The look on the Doc's face!!! She was speechless. She said

that was the first time a spouse had admitted in her presence that

they would try to illegally obtain an organ....oh gosh y'all, it was

just too much! Hilarity in the face of such sadness.

She then had to explain to him that I'm not eligible for a transplant

(and also wanted to know just HOW he thought he was going to go about

finding a lung on the black market). He left her office so, so mad.

Once we got home he disappeared. When I found him, he was in our

bathroom, sitting on the edge of the tub just bawling his eyes out.

He couldn't stop. He grabbed me around the waist and cried and cried,

and told me how he couldn't and wouldn't live without me.

You would have to know my Chaz to understand this. The only other

time I had seen him cry was when his Dad died. So I knew this was

going to be terribly hard on us both. I know what it's like being on

the other side of this coin, having watched both of my parents die

and not being able to do a damn thing to help them....so I " get " what

Chaz is feeling.

Dawn, and all of you PF'ers, please remember to talk to your spouses,

or significant others, or friends, and know that they are hurting for

you too. Sometimes I get so wrapped up in " my " disease that I forget

how much it affects those around me too.

And Dawn, I'm so sorry that you're enduring this at such a young age.

As I said in my other post to you, keep the faith, and know

you're " home " when you come to this board.

Big Texas Hugs!

Babs

> > >

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

> > >

> >

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

-----

> >

> >No virus found in this incoming message.

> >Checked by AVG Free Edition.

> >Version: 7.5.516 / Virus Database: 269.19.19/1256 - Release Date:

2/2/2008 1:50 PM

> >

>

Report post · February 4, 2008

Yes, you are the Diane that my husband is thinking of. He even

said the house he was thinking of was in the Hartland area. It's such

a small world. My husband works for Dickinson's Plumbing (

Dickinson). I know what you mean about working. It's as if you're

giving up a huge part of your independence when you have to stop. Do

you at least have a desk job or do you work in the factory? We will

definitely have to get together soon for coffee. I've been telling

everyone about 'meeting' you. I just can't believe my good luck! )

Dawn in Centreville

> > > >

> > > > 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/

> > >

> >

> > ____________ _________ _________ _________ _________ ____

> > Yahoo! Canada Toolbar: Search from anywhere on the web, and bookmark

> your favourite sites. Download it now at

> > http://ca.toolbar. yahoo.com.

> >

>

> Ask a question on any topic and get answers from real people.

Go to Yahoo! Answers and share what you know at

http://ca.answers.yahoo.com

>

Report post · February 4, 2008

What's her name, ?? That's where my extended family lives (and

my mother was born and raised!), believe it or not, and I lived there

for about 5 years, myself. Isn't this a small world?? I love it!

Dawn in N.B.

> > > > >

> > > > > 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/

> > > >

> > >

> > > ____________________________________________________

> > > Yahoo! Canada Toolbar: Search from anywhere on the web, and bookmark

> > your favourite sites. Download it now at

> > > http://ca.toolbar.yahoo.com.

> > >

> >

>

Report post · February 4, 2008

Thanks " Mama " . LOL! I think these boards are a great place for

encouragement and friendship when people all have one MAJOR thing in

common....yet we're all so different too! And it's so great that so

many members are meeting outside the list and making these close

personal friendships....just as I hope to do with Diane.

Best of luck with your cataract surgery! I pray it goes well and

you're seeing better before you know it! )

Dawn in N.B.

> >

> > 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 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

> >

>

Report post · February 4, 2008

Well, that's definitely understandable, . Your health is the

most important thing and you should make that the #1 priority. If the

right man does come along, he will embrace ALL of you...through

sickness OR health, right? )

Dawn in N.B.

> > > >

> > > > 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

> > > >

> > >

> >

>

Report post · February 4, 2008

Yes, I knew he was hurting, but I guess it was just nice to actually

see him express it (not that I WANT him to hurt or WANT him to cry,

mind you...but you know what I mean!) The only other time I had seen

him cry was at his father's funeral, so this was a pretty big deal!

My husband is 48....14 years older than me. Still young though, yes. )

I actually put a little note in his lunch box last night so that he

would find it today telling him how much I love him and thanking him

for being my " rock " . That is truly the best word to describe him

right now.

Dawn in N.B.

> > >

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

> > >

> >

>

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

> >

> >No virus found in this incoming message.

> >Checked by AVG Free Edition.

> >Version: 7.5.516 / Virus Database: 269.19.19/1256 - Release Date:

2/2/2008 1:50 PM

> >

>

Report post · February 4, 2008

I was finally able to access the website and once seeing it, I

recognized it immediately. I have visited it several times before and

yes, it is a beautiful and encouraging website. Thank you though for

recommending it to me. Now that I've been DX with PF, our stories and

very similar....unfortunately.

Dawn in N.B.

>

> The link to http://www.lenorsjo urney.com/ is very encouraging and a

testament of living life to its fullest. And another example of how

all our paths are different. Keep the faith!

>

> gigi

> ILD 3/07

>

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

> Be a better friend, newshound, and know-it-all with Yahoo! Mobile.

Try it now.

>

Report post · February 4, 2008

Thanks so much for your post, Babs. I do appreciate all your advice!

Wow, you sure do have your fair share of AI diseases too, don't

you?!! Phew! Did you also test positive for the JO-1 antibody? I'm

also curious if you were DX with your PF right when you got sick with

your AI diseases or if that came later (or perhaps before??) I know

this is all so individual. Can you explain what the benefit of

drinking lots of fluids is? Unfortunately, I am one of those that

hates drinking water (I know I am going to get lectured on this one!)

and tend to drink lots of coffee, tea, and diet Pepsi. Okay, okay...I

am preparing myself for LOTS of cyber tomatoes to be thrown at me! LOL!

Also, you mention exercise. I have read this and have wanted to ask,

how exactly does one exercise to build up your lungs when you can

barely get around the house or get dressed without gasping for breath,

yet they expect you to exercise??? I just don't understand that one!

Thanks,

Dawn in N.B.

> >

> > 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

> >

>

Report post · February 4, 2008

Thanks Babs. Your poor hubby! Bless his heart. ( Isn't it nice

to know, though, that he'll comb the world over to find you a lung,

need be??? Now that's true love!! LOL, LOL!! What a sweet man,

you've got there! )

Dawn in N.B.

> > > >

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

> > > >

> > >

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

> -----

> > >

> > >No virus found in this incoming message.

> > >Checked by AVG Free Edition.

> > >Version: 7.5.516 / Virus Database: 269.19.19/1256 - Release Date:

> 2/2/2008 1:50 PM

> > >

> >

>

Report post · February 4, 2008

One thing you ultimately hope to accomplish with loved ones and one

that is impossible.

Open communication and everyone expressing their honest feelings is

so valuable if you're able to achieve it. It's difficult for spouses,

children, and friends. They are all different. I have friends with

various reactions still and at least one in denial. Fortunately, the

person closest to me has accepted the facts of the disease and I can

talk completely honestly in terms of planning and decisions and whats

ahead.

The one thing that you can't accomplish is for family or friends to

ever fully comprehend how you feel. They try. They may come very

close. They may even say " I understand. " But, the reality is no one

else can completely understand. That's a lot of the benefit of this

board is talking to those who are in the same place you are. However,

even there no two of us are identical. But, the best spouse in the

world can never completely understand nor can you completely

understand how it is to be in their position. So, its communicate as

openly and honestly as you can and accept and respect the feelings of

each other.

> > > >

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

> > > >

> > >

> >

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

-----

> > >

> > >No virus found in this incoming message.

> > >Checked by AVG Free Edition.

> > >Version: 7.5.516 / Virus Database: 269.19.19/1256 - Release Date:

> 2/2/2008 1:50 PM

> > >

> >

>

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