Re: Re: New member here

[Guest guest]

Hi , wow long time no see..post.. How are you doing? Good to hear from you. Love and Prayers, Peggyipf 6/04Worry looks around.Sorry looks back,Faith looks up. Welcome Dawn, although I'm sorry you have to be here. My name is . I'm also 34. I live in Kansas City and work as a journalist, although if I don't find a way to cut my medical expenses, I'm not sure how much longer I can do that. Long story. I have PF because of Hermansky-Pudlak Syndrome, a rare type of albinism that causes vision loss, a bleeding disorder and in some genes (like mine) Crohn's and PF. There is very likely an auto-immune connection, but it isn't well understood yet.I am pretty lucky so far. I was diagnosed with HPS (for all practical purposes, again, long story) in 2002 and with PF in 2006. In 2002 they told me I had five years, maybe seven if I was really, really lucky. Today I'm in a drug trial for PF. I don't know if I'm getting the real stuff or not - but my FVC  has gone up 20 points and DLCO has gone up 10 - so I'm doing way better than anyone could have ever predicted.I only say that because five years ago it was all so gloom and doom and hopeless.The frustrating thing with all the research underway is that it just can't happen soon enough or fast enough. I want it, and I want it NOW! Grin!This is a very loving group and I'm sure you'll find lots of support here.Hermansky-Pudlak Syndrome/PF 06www.heatherkirkwood.blogspot.com>> Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on> Thursday...however have been experiencing strong symptoms and begging> the Dr's. to take me seriously for the past 5 months. I live in an> extremely small town in N.B., Canada, so to get scheduled for tests> and procedures, it seems like you have to wait an eternity! *sigh* I> have a very complicated medical history and so I at least know that my> PF is NOT the IPF variety, as I know mine is related to my autoimmune> disease. In 2001, when I was 28, I was diagnosed with the autoimmune> disease, Polymyositis and I also tested positive for the anti JO-1> antibody. Apparently this antibody means that you have a very high> chance at getting an ILD. I was also diagnosed with Sjogrens Syndrome> and Raynauds Phenomenon during this time. Immediately prior to> getting diagnosed with the above, I had 2 blood clots in my left leg> and 3 blood clots in my lungs, therefore, I am now taking Warfarin for> life. I've also had Asthma since childhood. That's my medical history> in a nutshell. Over the past 5 months, I haven't been able to breathe> doing the simplest of tasks, such as bathing (that's the worst!),> getting dressed or changed, and sometimes even brushing my teeth or> washing my face. I have this intense burning in my chest when I> inhale and it just about kills me to yawn, because of that burning> sensation (all my Dr.'s would do is lecture me about GERD when I> talked to them about this but I knew it had nothing to do with GERD> since my GERD is very well controlled. It was finally a CT Scan that> I had done 2 weeks ago that apparently confirmed my PF diagnosis and> apparently I am at the "early stage". I have seen my Pulmonologist> once previous to having my CT Scan done and I will see him again but I> am waiting to have a 2nd set of Pulmonary Function test performed> (along with blood gases), as well as an Echocardiogram done. When my> GP told me my diagnosis on Thursday, she basically told me the news as> if she were diagnosing me with the common cold. It was very matter of> fact (and dare I say chipper?) and she sent me out the door. Of> course I didn't know what it was she was talking about so I was> absolutely fine then and there but once I got home and did some> research and let the news register, I got REALLY upset at the way she> told me. We've had an awesome relationship over the past 15 years and> I just can't believe that she wouldn't have more sympathy than that!!?> To be perfectly honest, I'm feeling quite hopeless. Is this as bad as> I think it is?? I know you all are in the same boat as I am and> probably have had to deal with all the ugliness this disease brings> for far too long and I'm so sorry I had to find you this way!! > However, I desperately need your support right now and all the advice> that you have to offer. Thankyou!> > Dawn, 34, married, mother of 2 girls, ages 11 & 9>

[Guest guest]

Hi Dawn:

I am from Woodstock. How about you?I hope that we are close to one another. It would be great to have someone close by who can relate. My daughter lives in Shediac and I do go there fairly often to visit. I am just transitioning out of work now so will have lots of free time in the future. I have worked for McCain Foods for the last 15 years in Florenceville. I think my Dr. was thinking heart instead of lungs because of the shortness of breath. I see Dr. Bishop in Saint for pulmo. How was your first set of PFT's? I am going for my 3 round on the 11th. Really looking forward to that! Diane IPF June 07New 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/>

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[Guest guest]

Dawn:

That is amazing! I go to Dr. McLaughlin. He has been my doctor for 30 years. He admits that he doesn't know much about PF but he did manage to get me in to see Dr. Bishop. He is supposed to be the top authority on PF in the Atlantic Provinces. When you have your PFT's done, they will give you a copy. You may have to ask for it but you are entitled. I keep them so I can keep track of the results. I have always heard good things about Dr. O'Leary. Perhaps she thought she was being kind? I usually don't post a lot - just watch and learn. I hope that we can get together soon for coffee or a chat. I am 56 and a bit older than you but we do have a major commonality. Diane IPF June 07New 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/>

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[Guest guest]

Dawn:

I bought a house 2 years ago in Hartland and completely renovated it. There were lots of plummers coming and going. After I found out about the PF, I sold the house and moved in with my brother in the family home. We had it divided into two apartments so that we have our own space but he is close by if I need him. He can also do all the snow shovelling! I am still working full time but actually only managed to go 2 days last week. I know I should be done but I can't seem to take that final step. I am going to work tomorrow but I am already wondering how I will be feeling when the morning comes. Diane IPF June 07New 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 andbegging> > > 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 knowthat my> > > PF is NOT the IPF variety, as I know mine is related to myautoimmune> > > 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 SjogrensSyndrome> > > 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 takingWarfarin for> > > life. I've also had Asthma since childhood. That's my medicalhistory> > > in a nutshell. Over the past 5 months, I haven't been able tobreathe> > > 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 againbut 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 thenews as> > > if she were diagnosing me with the common cold. It was verymatter 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 theway she> > > told me. We've had an awesome relationship over the past 15years and> > > I just can't believe that she wouldn't have more sympathy thanthat!!?> > > To be perfectly honest, I'm feeling quite hopeless. Is this asbad 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 theadvice> > > 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 bookmarkyour favourite sites. Download it now at> http://ca.toolbar. yahoo.com.>

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[Guest guest]

:

It is a small world indeed. My brother was a forest ranger in Canterbury for 35 years. It is only 25 minutes from where I live. Diane IPF June 07New 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 fortests> > > > 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 theautoimmune> > > > 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 myleft 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 myteeth 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 withGERD> > > > since my GERD is very well controlled. It was finally a CTScan that> > > > I had done 2 weeks ago that apparently confirmed my PFdiagnosis 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 diseasebrings> > > > 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.> >>

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[Guest guest]

Dawn... watch the board, as we all are , for updates about Joyce. Peggy usually posts about her. Peggy and Joyce have become very close through the board here. Great friendships are formed here and people get together and meet when they can. I've personally met R. when she was in Oregon visiting a daughter. We had a great visit. Talked until I had to beg off...couldn't talk anymore. lol

Be sure and check out the photo albums...most of us have albums there. Put one on for you too.

Yes, my multiple health issues have me a bit down right now. Always something to deal with, another Dr. to see. We here on the board 'get it'. I'm sure my age plays a part too and some of the meds I take affect me.

But I'm no different from most of us here. It's just my turn to be down I guess.

Having cataract surgery in the morning and I'll bet that will give me a 'brighter' outlook!

Nice you are already active on the board.

Also watch for 'chats' that take place. Leanne will post when, how and what time.

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>

[Guest guest]

This group is so loving and concerned for each other that after just a short time we have become an AIR FAMILY.Being able to meet some in Chattanooga was just awesome.Sher, I will be praying for you tomorrow. You will do fine. Post when you can.I have NEVER seen a bear like Rosebud she is HUGE, but beautiful. I am surprised she fit in the car to get her home..LOLEnjoy her. Love ya bunches.Love and Prayers, Peggyipf 6/04Worry looks around.Sorry looks back,Faith looks up. Dawn...  watch the board, as we all are , for updates about Joyce. Peggy usually posts about her. Peggy and Joyce have become very close through the board here. Great friendships are formed here and people get together and meet when they can. I've personally met R. when she was in Oregon visiting a daughter. We had a great visit. Talked until I had to beg off...couldn't talk anymore. lolBe sure and check out the photo albums...most of us have albums there. Put one on for you too.Yes, my multiple health issues have me a bit down right now. Always something to deal with, another Dr. to see. We here on the board 'get it'. I'm sure my age plays a part too and some of the meds I take affect me.But I'm no different from most of us here. It's just my turn to be down I guess.Having cataract surgery in the morning and I'll bet that will give me a 'brighter' outlook!Nice you are already active on the board.Also watch for 'chats' that take place. Leanne will post when, how and what time. 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>

[Guest guest]

Dawn, Your husband's response is very

normal for a man. They really just want to "fix" what's wrong.

Dealing with the emotional stuff is usually very difficult. It's good

that he'e able to tell you. You will need him be a good listener

on many days too.

Yes, he's hurting as are you...you're both so young!!

Z fibriotic NSIP/05

Z

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

Potter,

reader,carousel lover and MomMom to

Darah

“I’m gonna

be iron like a lion in Zion” Bob Marley

pm_dawn73 wrote:

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

believe

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

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

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

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

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

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

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

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

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

forward to getting to know you better! )

DAwn

>

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

> > diagnosed with PF on

> > Thursday...however have been experiencing strong

> > symptoms and begging

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

> > months. I live in an

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

> > scheduled for tests

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

> > eternity! *sigh* I

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

> > least know that my

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

> > to my autoimmune

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

> > with the autoimmune

> > disease, Polymyositis and I also tested positive for

> > the anti JO-1

> > antibody. Apparently this antibody means that you

> > have a very high

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

> > Sjogrens Syndrome

> > and Raynauds Phenomenon during this time.

> > Immediately prior to

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

> > clots in my left leg

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

> > taking Warfarin for

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

> > my medical history

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

> > been able to breathe

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

> > the worst!),

> > getting dressed or changed, and sometimes even

> > brushing my teeth or

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

> > chest when I

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

> > of that burning

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

> > GERD when I

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

> > to do with GERD

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

> > finally a CT Scan that

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

> > PF diagnosis and

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

> > my Pulmonologist

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

> > see him again but I

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

> > test performed

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

> > Echocardiogram done. When my

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

> > told me the news as

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

> > was very matter of

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

> > the door. Of

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

> > about so I was

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

> > and did some

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

> > upset at the way she

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

> > past 15 years and

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

> > sympathy than that!!?

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

> > Is this as bad as

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

> > as I am and

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

> > disease brings

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

> > this way!!

> > However, I desperately need your support right now

> > and all the advice

> > that you have to offer. Thankyou!

> >

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

> >

> >

>

>

>

>

__________________________________________________________

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

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

>

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

[Guest guest]

Sher, I hope that all goes well with the

cataract surgery today. Mike had both eyes done in the Fall 4 weeks

apart.

His vision is so much better. And he had no trouble after the

procedures at all.

I've developed a cataract in my right eye( thanks to the Prednisone)

There was no sign of one just 9 months ago.

and the Doc will let me know when he feels it should be removed.

Z fibriotic NSIP/05

Z

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

Potter,

reader,carousel lover and MomMom to

Darah

“I’m gonna

be iron like a lion in Zion” Bob Marley

Sher Bauman wrote:

Dawn...

watch the board, as we all are , for updates about Joyce. Peggy usually

posts about her. Peggy and Joyce have become very close through the

board here. Great friendships are formed here and people get together

and meet when they can. I've personally met R. when she was in

Oregon visiting a daughter. We had a great visit. Talked until I had to

beg off...couldn't talk anymore. lol

Be

sure and check out the photo albums...most of us have albums there. Put

one on for you too.

Yes,

my multiple health issues have me a bit down right now. Always

something to deal with, another Dr. to see. We here on the board 'get

it'. I'm sure my age plays a part too and some of the meds I take

affect me.

But

I'm no different from most of us here. It's just my turn to be down I

guess.

Having

cataract surgery in the morning and I'll bet that will give me a

'brighter' outlook!

Nice

you are already active on the board.

Also

watch for 'chats' that take place. Leanne will post when, how and what

time.

Mama-Sher, 69; IPF, 3-06, OR.

Don't fret about tomorrow, God is already there!

-----

Original Message -----

From:

pm_dawn73

To:

Breathe-Support

Sent:

Sunday, February 03, 2008 1:08 PM

Subject:

Re: New member here

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

>

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