Newbie

[Guest guest]

, Well, honey, we are here for you. Keep writing to the group for support, share with us what's

happening with you, and if we can help. Sending you good vibes, and lots of luck in the dx process.

Hugs, MM aka: Mike, one of the moderators

[Guest guest]

, Well, honey, we are here for you. Keep writing to the group for support, share with us what's

happening with you, and if we can help. Sending you good vibes, and lots of luck in the dx process.

Hugs, MM aka: Mike, one of the moderators

[Guest guest]

TO THE GROUP.......AND I WON'T TELL YOU NOT TO WORRY....THAT WOULD BE PATRONIZING.....JUST KNOW THAT YOU WILL FIND ALL THE SUPPORT AND INFORMATION YOU NEED HERE .......ALL YOU NEED TO DO IS ASK!!

C.

Newbie

Hi. I'm the new kid on the block at the moment. I haven't been diagnosed with Lupus, as of yet. It is just one of the many different DX's they're (docs) are looking at.They're looking at everything from lupus to MS to everthing inbetween. Today I had a MRI. My first ever. It sucked. I am 28 years old, married for the past 8 1\2 years, and I have three children (kevin 7 yrs has autism, and boy-girl twins,Jayden and Martha, who are three). It all started at the end of March as I was pouring a cup of coffee, of all things. I lost part of my vision in my left eye. Turns out my optic nerve is swollen, and my cardiolipins are all wrong(very high). My nerves are fried. I know it's pointless to over worry as what will be will be. I know that lesson very well. It just turns out that I am able to handle anyone elses problems better than my own, whether it's my parents, husband, children....I guess I just want to be somewhere where I can vent and find some humor, cuz right now I feel sort of bleak. You know how everybody tells you one thing but you know in your heart they're wrong? Everyone says by the end of all the testing I'll probably be the healthiest person they know who just needs blood thinners. I hope they're right, but I just have this feeling that it's something bigger. "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

[Guest guest]

TO THE GROUP.......AND I WON'T TELL YOU NOT TO WORRY....THAT WOULD BE PATRONIZING.....JUST KNOW THAT YOU WILL FIND ALL THE SUPPORT AND INFORMATION YOU NEED HERE .......ALL YOU NEED TO DO IS ASK!!

C.

Newbie

Hi. I'm the new kid on the block at the moment. I haven't been diagnosed with Lupus, as of yet. It is just one of the many different DX's they're (docs) are looking at.They're looking at everything from lupus to MS to everthing inbetween. Today I had a MRI. My first ever. It sucked. I am 28 years old, married for the past 8 1\2 years, and I have three children (kevin 7 yrs has autism, and boy-girl twins,Jayden and Martha, who are three). It all started at the end of March as I was pouring a cup of coffee, of all things. I lost part of my vision in my left eye. Turns out my optic nerve is swollen, and my cardiolipins are all wrong(very high). My nerves are fried. I know it's pointless to over worry as what will be will be. I know that lesson very well. It just turns out that I am able to handle anyone elses problems better than my own, whether it's my parents, husband, children....I guess I just want to be somewhere where I can vent and find some humor, cuz right now I feel sort of bleak. You know how everybody tells you one thing but you know in your heart they're wrong? Everyone says by the end of all the testing I'll probably be the healthiest person they know who just needs blood thinners. I hope they're right, but I just have this feeling that it's something bigger. "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

[Guest guest]

TO THE GROUP.......AND I WON'T TELL YOU NOT TO WORRY....THAT WOULD BE PATRONIZING.....JUST KNOW THAT YOU WILL FIND ALL THE SUPPORT AND INFORMATION YOU NEED HERE .......ALL YOU NEED TO DO IS ASK!!

C.

Newbie

Hi. I'm the new kid on the block at the moment. I haven't been diagnosed with Lupus, as of yet. It is just one of the many different DX's they're (docs) are looking at.They're looking at everything from lupus to MS to everthing inbetween. Today I had a MRI. My first ever. It sucked. I am 28 years old, married for the past 8 1\2 years, and I have three children (kevin 7 yrs has autism, and boy-girl twins,Jayden and Martha, who are three). It all started at the end of March as I was pouring a cup of coffee, of all things. I lost part of my vision in my left eye. Turns out my optic nerve is swollen, and my cardiolipins are all wrong(very high). My nerves are fried. I know it's pointless to over worry as what will be will be. I know that lesson very well. It just turns out that I am able to handle anyone elses problems better than my own, whether it's my parents, husband, children....I guess I just want to be somewhere where I can vent and find some humor, cuz right now I feel sort of bleak. You know how everybody tells you one thing but you know in your heart they're wrong? Everyone says by the end of all the testing I'll probably be the healthiest person they know who just needs blood thinners. I hope they're right, but I just have this feeling that it's something bigger. "The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies

[Guest guest]

Welcome ,

I am sorry about how quickly things are progressing for Joe. I think you are right about getting a Joe transplant sooner than later. I will be praying that things go well for Joe and he regains his health.

Ian (52) PSC 89

Hello Everyone!I can't thank you all enough for this group and the excellent sharing of information that goes on here. My 41 year old husband Joe was diagnosed with PSC in June and told that it was time to be put on the transplant list at UCLA by his gastro Dr. His MELD is currently at

17 and he suffers from jaundice, fatigue, weight loss and SEVERE, all over body itching(which causes insomnia) but no other major problems. He is on Ursodiol & Cholestyramine. He has had a colonoscopy, ERCP & liver biopsy which all came back

good and we are going through the transplant eval process now. I have spent the last month learning everything I can about this disease and researching the best place to receive a liver transplant. We are looking at the MAYO clinic in ville, FL due to the

much shorter wait list than UCLA.(6-8 weeks average vs 1 year average) Joe has been an athlete all his life - playing college soccer to doing marathons and triathalons and cycling. Our thought was that he would be better off getting the transplant sooner rather than

later while his body is still somewhat strong and free of complications. I am not sure that we have all of the information for our options and I feel that I have only scratched the surface of this disease and the liver transplant process. I would truly appreciate any

feedback. Thank you again to all that keep this support group going - I finally feel like we've found an anchor to hold on to after living the last 6 weeks in chaos.Sincerely, BaeskensWife of Joe PSC June 08

-- Ian Cribb P.Eng.

[Guest guest]

Welcome ,

I am sorry about how quickly things are progressing for Joe. I think you are right about getting a Joe transplant sooner than later. I will be praying that things go well for Joe and he regains his health.

Ian (52) PSC 89

Hello Everyone!I can't thank you all enough for this group and the excellent sharing of information that goes on here. My 41 year old husband Joe was diagnosed with PSC in June and told that it was time to be put on the transplant list at UCLA by his gastro Dr. His MELD is currently at

17 and he suffers from jaundice, fatigue, weight loss and SEVERE, all over body itching(which causes insomnia) but no other major problems. He is on Ursodiol & Cholestyramine. He has had a colonoscopy, ERCP & liver biopsy which all came back

good and we are going through the transplant eval process now. I have spent the last month learning everything I can about this disease and researching the best place to receive a liver transplant. We are looking at the MAYO clinic in ville, FL due to the

much shorter wait list than UCLA.(6-8 weeks average vs 1 year average) Joe has been an athlete all his life - playing college soccer to doing marathons and triathalons and cycling. Our thought was that he would be better off getting the transplant sooner rather than

later while his body is still somewhat strong and free of complications. I am not sure that we have all of the information for our options and I feel that I have only scratched the surface of this disease and the liver transplant process. I would truly appreciate any

feedback. Thank you again to all that keep this support group going - I finally feel like we've found an anchor to hold on to after living the last 6 weeks in chaos.Sincerely, BaeskensWife of Joe PSC June 08

-- Ian Cribb P.Eng.

[Guest guest]

Welcome ,

I am sorry about how quickly things are progressing for Joe. I think you are right about getting a Joe transplant sooner than later. I will be praying that things go well for Joe and he regains his health.

Ian (52) PSC 89

Hello Everyone!I can't thank you all enough for this group and the excellent sharing of information that goes on here. My 41 year old husband Joe was diagnosed with PSC in June and told that it was time to be put on the transplant list at UCLA by his gastro Dr. His MELD is currently at

17 and he suffers from jaundice, fatigue, weight loss and SEVERE, all over body itching(which causes insomnia) but no other major problems. He is on Ursodiol & Cholestyramine. He has had a colonoscopy, ERCP & liver biopsy which all came back

good and we are going through the transplant eval process now. I have spent the last month learning everything I can about this disease and researching the best place to receive a liver transplant. We are looking at the MAYO clinic in ville, FL due to the

much shorter wait list than UCLA.(6-8 weeks average vs 1 year average) Joe has been an athlete all his life - playing college soccer to doing marathons and triathalons and cycling. Our thought was that he would be better off getting the transplant sooner rather than

later while his body is still somewhat strong and free of complications. I am not sure that we have all of the information for our options and I feel that I have only scratched the surface of this disease and the liver transplant process. I would truly appreciate any

feedback. Thank you again to all that keep this support group going - I finally feel like we've found an anchor to hold on to after living the last 6 weeks in chaos.Sincerely, BaeskensWife of Joe PSC June 08

-- Ian Cribb P.Eng.

[Guest guest]

Wlfurr55,

Welcome to Breathe Support! I'm sorry that you had reason to look for this group but since you did I'm happy you found us.

It does sound as though you are receiving good care from your doctors. Unfortunately with many of these diseases ( there are some 200 varieties of interstitial lung disease) there isn't any real treatment and this is especially true of UIP. Sometimes doctors will try a course of prednisone to see if the disease responds but most often it does not.

The one thing I think many of us might suggest is to get yourself evaluated at a university medical center with specialists in interstitial lung disease. The average pulmonologist doesn't see enough of this disease to be familiar with all the most up to date information. I don't know where you live but I live in NC and receive my care at Duke University. We have folks here in GA who are treated at Emory University and others in IL who go to University of Chicago etc etc. Even if you don't live close enough to one of these places to be seen there on a regular basis a one time evaluation of your records and a thorough physical can have tremendous value. Most doctors will support a patients desire for a second opinion especially in the face of such a serious diagnosis.

Please keep coming back to the board. We're glad you're here and hope we can be of help to you.

By the way, what is your name?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thursday, February 19, 2009 4:06:45 PMSubject: newbie

Hello, I'm new to this site. I joined so I could possibly get more info than my Pulmadude is giving me. Here is my background: I have had RA for quite some time now and got a respatory infection in Nov. 2008. I get these infections about every 3-4 months due to taking Prednisone and Orincia for my RA. My GP decided to do a chest x-ray and discovered what he told me was "pulmonary fibrosis". He sent me to the pulmadude in Dec and he had a hi-res CT done. He confermed the fibrosis but did not want to make a determination until he got another CT in February. We did that CT last week and he made his diagnosis of UIP. I have very few symptoms that anything is wrong(some shotnes of breath during heavy activity) and my pulminary tests show near normal. I don't know anything about this disease but was wondering should the pulmadude be more active than he is? All he has said is we discovered the desease at a

very early stage, that there was no treatment, and he would just "watch" it every 4-6 months. I asked what was the prognosis and all he said was "don't know...it looks stable for now". And he sent me on my way. The only info I have gotten beyond that is the internet. Why are these Dr.s so vague? Thanks for any response/support.

[Guest guest]

Wlfurr55,

Welcome to Breathe Support! I'm sorry that you had reason to look for this group but since you did I'm happy you found us.

It does sound as though you are receiving good care from your doctors. Unfortunately with many of these diseases ( there are some 200 varieties of interstitial lung disease) there isn't any real treatment and this is especially true of UIP. Sometimes doctors will try a course of prednisone to see if the disease responds but most often it does not.

The one thing I think many of us might suggest is to get yourself evaluated at a university medical center with specialists in interstitial lung disease. The average pulmonologist doesn't see enough of this disease to be familiar with all the most up to date information. I don't know where you live but I live in NC and receive my care at Duke University. We have folks here in GA who are treated at Emory University and others in IL who go to University of Chicago etc etc. Even if you don't live close enough to one of these places to be seen there on a regular basis a one time evaluation of your records and a thorough physical can have tremendous value. Most doctors will support a patients desire for a second opinion especially in the face of such a serious diagnosis.

Please keep coming back to the board. We're glad you're here and hope we can be of help to you.

By the way, what is your name?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thursday, February 19, 2009 4:06:45 PMSubject: newbie

Hello, I'm new to this site. I joined so I could possibly get more info than my Pulmadude is giving me. Here is my background: I have had RA for quite some time now and got a respatory infection in Nov. 2008. I get these infections about every 3-4 months due to taking Prednisone and Orincia for my RA. My GP decided to do a chest x-ray and discovered what he told me was "pulmonary fibrosis". He sent me to the pulmadude in Dec and he had a hi-res CT done. He confermed the fibrosis but did not want to make a determination until he got another CT in February. We did that CT last week and he made his diagnosis of UIP. I have very few symptoms that anything is wrong(some shotnes of breath during heavy activity) and my pulminary tests show near normal. I don't know anything about this disease but was wondering should the pulmadude be more active than he is? All he has said is we discovered the desease at a

very early stage, that there was no treatment, and he would just "watch" it every 4-6 months. I asked what was the prognosis and all he said was "don't know...it looks stable for now". And he sent me on my way. The only info I have gotten beyond that is the internet. Why are these Dr.s so vague? Thanks for any response/support.

[Guest guest]

I too am a lurker that lives in Minnesota!!

Where do you live? I am in Burnsville--near the Mall of America?

I see 2 different pulmodudettes--U of MN and in Edina, MN

If you would like --email me at jltitus@...

I will be leaving on vacation on Sunday for a week--so if I don't get

back to right away that is why.

Maybe we can meet somewhere.

>

> Hi, I'm and after this post I will probably slink into

the

> shadows of lurkerdom. (Yes, that's really a word...now. )

>

> I'm 32, I live in Minnesota and was just given the diagnosis last

week.

> Things aren't too bad yet and I guess I still have some tests to go

through,

> but I have gone through all my other life crises by joining yahoo

groups,

> why the heck not this one too? So, here I am.

>

> I am not on any medications yet, but that will be changing soon I'm

sure. I

> " get " to see a specialist next week and have more tests, and have an

> appointment with a team of doctors the following week to go

over " treatment

> options " .

>

> Don't be surprised if I am quiet. This is all so new to me I have

no idea

> what to think right now. I am just going to sit back and get the

feel for

> the group, and gather information about what I have to look forward

to on

> this lovely new journey /sarcasm. I'll pipe in if I get some news,

or have

> something to add, but I will probably be a lurker .

>

> Thanks for having this group. It's hard to get information about

the

> realities of things from the doctors. I have found sometimes the

nurses are

> willing to talk realities with you, but nothing beats talking to

someone

> living it daily.

>

> Laters,

> Chris

>

[Guest guest]

Minnesotans everywhere.I was born and raised on the Mesabi Range. My first wife was asultry Ukrainian girl from " nordeast " Mpls. Left Minnesota some28 years ago and never looked back.jon

50, sarcoidosis 1/9-- A little nonsense now and then is relished by the wisest men.

[Guest guest]

Minnesotans everywhere.I was born and raised on the Mesabi Range. My first wife was asultry Ukrainian girl from " nordeast " Mpls. Left Minnesota some28 years ago and never looked back.jon

50, sarcoidosis 1/9-- A little nonsense now and then is relished by the wisest men.

[Guest guest]

Minnesotans everywhere.I was born and raised on the Mesabi Range. My first wife was asultry Ukrainian girl from " nordeast " Mpls. Left Minnesota some28 years ago and never looked back.jon

50, sarcoidosis 1/9-- A little nonsense now and then is relished by the wisest men.

[Guest guest]

Chris...welcome to our "Air Family". You are in the best place you can be since you must deal with our common disease. This is a great board full of greater people...

I've been on the board nearly 3 years (Mar.) and have remained fairly stable except for 1 dip in progression.

Many here on the board were dx (diagnosed) YEARS ago so try not to get any certain mind set.

I take no PF related meds. I am on O2 w/ exertion and at night.

Check out the Files section and Photos on the webpage and you'll soon know and see what we know and see!

Keep us posted...

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Newbie

Hi, I'm and after this post I will probably slink into the shadows of lurkerdom. (Yes, that's really a word...now. )I'm 32, I live in Minnesota and was just given the diagnosis last week. Things aren't too bad yet and I guess I still have some tests to go through, but I have gone through all my other life crises by joining yahoo groups, why the heck not this one too? So, here I am.I am not on any medications yet, but that will be changing soon I'm sure. I "get" to see a specialist next week and have more tests, and have an appointment with a team of doctors the following week to go over "treatment options".Don't be surprised if I am quiet. This is all so new to me I have no idea what to think right now. I am just going to sit back and get the feel for the group, and gather information about what I have to look forward to on this lovely new journey /sarcasm. I'll pipe in if I get some news, or have something to add, but I will probably be a lurker .Thanks for having this group. It's hard to get information about the realities of things from the doctors. I have found sometimes the nurses are willing to talk realities with you, but nothing beats talking to someone living it daily.Laters,Chris

[Guest guest]

Chris...welcome to our "Air Family". You are in the best place you can be since you must deal with our common disease. This is a great board full of greater people...

I've been on the board nearly 3 years (Mar.) and have remained fairly stable except for 1 dip in progression.

Many here on the board were dx (diagnosed) YEARS ago so try not to get any certain mind set.

I take no PF related meds. I am on O2 w/ exertion and at night.

Check out the Files section and Photos on the webpage and you'll soon know and see what we know and see!

Keep us posted...

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Newbie

Hi, I'm and after this post I will probably slink into the shadows of lurkerdom. (Yes, that's really a word...now. )I'm 32, I live in Minnesota and was just given the diagnosis last week. Things aren't too bad yet and I guess I still have some tests to go through, but I have gone through all my other life crises by joining yahoo groups, why the heck not this one too? So, here I am.I am not on any medications yet, but that will be changing soon I'm sure. I "get" to see a specialist next week and have more tests, and have an appointment with a team of doctors the following week to go over "treatment options".Don't be surprised if I am quiet. This is all so new to me I have no idea what to think right now. I am just going to sit back and get the feel for the group, and gather information about what I have to look forward to on this lovely new journey /sarcasm. I'll pipe in if I get some news, or have something to add, but I will probably be a lurker .Thanks for having this group. It's hard to get information about the realities of things from the doctors. I have found sometimes the nurses are willing to talk realities with you, but nothing beats talking to someone living it daily.Laters,Chris

[Guest guest]

Chris...welcome to our "Air Family". You are in the best place you can be since you must deal with our common disease. This is a great board full of greater people...

I've been on the board nearly 3 years (Mar.) and have remained fairly stable except for 1 dip in progression.

Many here on the board were dx (diagnosed) YEARS ago so try not to get any certain mind set.

I take no PF related meds. I am on O2 w/ exertion and at night.

Check out the Files section and Photos on the webpage and you'll soon know and see what we know and see!

Keep us posted...

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Newbie

Hi, I'm and after this post I will probably slink into the shadows of lurkerdom. (Yes, that's really a word...now. )I'm 32, I live in Minnesota and was just given the diagnosis last week. Things aren't too bad yet and I guess I still have some tests to go through, but I have gone through all my other life crises by joining yahoo groups, why the heck not this one too? So, here I am.I am not on any medications yet, but that will be changing soon I'm sure. I "get" to see a specialist next week and have more tests, and have an appointment with a team of doctors the following week to go over "treatment options".Don't be surprised if I am quiet. This is all so new to me I have no idea what to think right now. I am just going to sit back and get the feel for the group, and gather information about what I have to look forward to on this lovely new journey /sarcasm. I'll pipe in if I get some news, or have something to add, but I will probably be a lurker .Thanks for having this group. It's hard to get information about the realities of things from the doctors. I have found sometimes the nurses are willing to talk realities with you, but nothing beats talking to someone living it daily.Laters,Chris

[Guest guest]

Hi Chris! I am glad that you have found us! I was diagnosed in December, 1998. I was wondering what type of symptoms have you been having. Many of us have had the dry cough. Please let us know if you have a question and many will jump on here and answer. Also, if you read the previous messges on the board your knowlege of IPF will be greatly enriched!

Toodles!

Jane UIP/IPF 12/1998 Dalton Georgia aka pianolady_musicgirl

>> Chris...welcome to our "Air Family". You are in the best place you can be since you must deal with our common disease. This is a great board full of greater people...> I've been on the board nearly 3 years (Mar.) and have remained fairly stable except for 1 dip in progression.> Many here on the board were dx (diagnosed) YEARS ago so try not to get any certain mind set.> I take no PF related meds. I am on O2 w/ exertion and at night.> Check out the Files section and Photos on the webpage and you'll soon know and see what we know and see!> Keep us posted...> MamaSher; 70, IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > Newbie> > > Hi, I'm and after this post I will probably slink into the shadows of lurkerdom. (Yes, that's really a word...now. )> > I'm 32, I live in Minnesota and was just given the diagnosis last week. Things aren't too bad yet and I guess I still have some tests to go through, but I have gone through all my other life crises by joining yahoo groups, why the heck not this one too? So, here I am.> > I am not on any medications yet, but that will be changing soon I'm sure. I "get" to see a specialist next week and have more tests, and have an appointment with a team of doctors the following week to go over "treatment options".> > Don't be surprised if I am quiet. This is all so new to me I have no idea what to think right now. I am just going to sit back and get the feel for the group, and gather information about what I have to look forward to on this lovely new journey /sarcasm. I'll pipe in if I get some news, or have something to add, but I will probably be a lurker .> > Thanks for having this group. It's hard to get information about the realities of things from the doctors. I have found sometimes the nurses are willing to talk realities with you, but nothing beats talking to someone living it daily.> > Laters,> Chris>

[Guest guest]

Hi Chris! I am glad that you have found us! I was diagnosed in December, 1998. I was wondering what type of symptoms have you been having. Many of us have had the dry cough. Please let us know if you have a question and many will jump on here and answer. Also, if you read the previous messges on the board your knowlege of IPF will be greatly enriched!

Toodles!

Jane UIP/IPF 12/1998 Dalton Georgia aka pianolady_musicgirl

>> Chris...welcome to our "Air Family". You are in the best place you can be since you must deal with our common disease. This is a great board full of greater people...> I've been on the board nearly 3 years (Mar.) and have remained fairly stable except for 1 dip in progression.> Many here on the board were dx (diagnosed) YEARS ago so try not to get any certain mind set.> I take no PF related meds. I am on O2 w/ exertion and at night.> Check out the Files section and Photos on the webpage and you'll soon know and see what we know and see!> Keep us posted...> MamaSher; 70, IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > Newbie> > > Hi, I'm and after this post I will probably slink into the shadows of lurkerdom. (Yes, that's really a word...now. )> > I'm 32, I live in Minnesota and was just given the diagnosis last week. Things aren't too bad yet and I guess I still have some tests to go through, but I have gone through all my other life crises by joining yahoo groups, why the heck not this one too? So, here I am.> > I am not on any medications yet, but that will be changing soon I'm sure. I "get" to see a specialist next week and have more tests, and have an appointment with a team of doctors the following week to go over "treatment options".> > Don't be surprised if I am quiet. This is all so new to me I have no idea what to think right now. I am just going to sit back and get the feel for the group, and gather information about what I have to look forward to on this lovely new journey /sarcasm. I'll pipe in if I get some news, or have something to add, but I will probably be a lurker .> > Thanks for having this group. It's hard to get information about the realities of things from the doctors. I have found sometimes the nurses are willing to talk realities with you, but nothing beats talking to someone living it daily.> > Laters,> Chris>

[Guest guest]

Hi Chris! I am glad that you have found us! I was diagnosed in December, 1998. I was wondering what type of symptoms have you been having. Many of us have had the dry cough. Please let us know if you have a question and many will jump on here and answer. Also, if you read the previous messges on the board your knowlege of IPF will be greatly enriched!

Toodles!

Jane UIP/IPF 12/1998 Dalton Georgia aka pianolady_musicgirl

>> Chris...welcome to our "Air Family". You are in the best place you can be since you must deal with our common disease. This is a great board full of greater people...> I've been on the board nearly 3 years (Mar.) and have remained fairly stable except for 1 dip in progression.> Many here on the board were dx (diagnosed) YEARS ago so try not to get any certain mind set.> I take no PF related meds. I am on O2 w/ exertion and at night.> Check out the Files section and Photos on the webpage and you'll soon know and see what we know and see!> Keep us posted...> MamaSher; 70, IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > Newbie> > > Hi, I'm and after this post I will probably slink into the shadows of lurkerdom. (Yes, that's really a word...now. )> > I'm 32, I live in Minnesota and was just given the diagnosis last week. Things aren't too bad yet and I guess I still have some tests to go through, but I have gone through all my other life crises by joining yahoo groups, why the heck not this one too? So, here I am.> > I am not on any medications yet, but that will be changing soon I'm sure. I "get" to see a specialist next week and have more tests, and have an appointment with a team of doctors the following week to go over "treatment options".> > Don't be surprised if I am quiet. This is all so new to me I have no idea what to think right now. I am just going to sit back and get the feel for the group, and gather information about what I have to look forward to on this lovely new journey /sarcasm. I'll pipe in if I get some news, or have something to add, but I will probably be a lurker .> > Thanks for having this group. It's hard to get information about the realities of things from the doctors. I have found sometimes the nurses are willing to talk realities with you, but nothing beats talking to someone living it daily.> > Laters,> Chris>

[Guest guest]

Rpennington, Do you have a name we came

use?Where are you?

Welcome to the "air family". Information is here and so are a group of

wonderfully caring people who are just like you. There are youngsters

like you too.

Read the old posts and get to know us. We'll learn about you over time

as well.

The best part of this Breathe-support group is that we all"get it"

No explanations needed, ranting is encouraged, humor is appreciated and

we get serious

when ever necessary.

So, again...WELCOME

Z fibriotic NSIP/05

Z 65,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

rpennington71 wrote:

I am 31 years old and just recently diagnosed with pulmonary

fibrosis.

I started having trouble breathing whenever I did the slightest thing.

I also keep getting lung infections. I have a chronic cough. I was

just wondering about others with pulmonary fibrosis.

No virus found in this incoming message.

Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.1/1961 - Release Date: 02/19/09 18:45:00

[Guest guest]

Rpennington, Do you have a name we came

use?Where are you?

Welcome to the "air family". Information is here and so are a group of

wonderfully caring people who are just like you. There are youngsters

like you too.

Read the old posts and get to know us. We'll learn about you over time

as well.

The best part of this Breathe-support group is that we all"get it"

No explanations needed, ranting is encouraged, humor is appreciated and

we get serious

when ever necessary.

So, again...WELCOME

Z fibriotic NSIP/05

Z 65,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

rpennington71 wrote:

I am 31 years old and just recently diagnosed with pulmonary

fibrosis.

I started having trouble breathing whenever I did the slightest thing.

I also keep getting lung infections. I have a chronic cough. I was

just wondering about others with pulmonary fibrosis.

No virus found in this incoming message.

Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.1/1961 - Release Date: 02/19/09 18:45:00

[Guest guest]

Rpennington, Do you have a name we came

use?Where are you?

Welcome to the "air family". Information is here and so are a group of

wonderfully caring people who are just like you. There are youngsters

like you too.

Read the old posts and get to know us. We'll learn about you over time

as well.

The best part of this Breathe-support group is that we all"get it"

No explanations needed, ranting is encouraged, humor is appreciated and

we get serious

when ever necessary.

So, again...WELCOME

Z fibriotic NSIP/05

Z 65,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

rpennington71 wrote:

I am 31 years old and just recently diagnosed with pulmonary

fibrosis.

I started having trouble breathing whenever I did the slightest thing.

I also keep getting lung infections. I have a chronic cough. I was

just wondering about others with pulmonary fibrosis.

No virus found in this incoming message.

Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.1/1961 - Release Date: 02/19/09 18:45:00

[Guest guest]

Hi Rpennington,

Welcome to Breathe Support. I'm so sorry to hear of you diagnosis especially at your age. You are definitely among friends here. We have people of all ages though most of us are older than you are. I am 49 and was diagnosed in June of 06. I had had a chronic cough and shortness of breath for a long time prior to my diagnosis.

Feel free to stay around and ask whatever questions come to your mind. There is no such thing as a silly question. You will find that the people here will 'get it' in a way that no one else in your life can because we are all struggling with the same disease.

What is your name? Please make yourself at home, we'd like to get to know you!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Friday, February 20, 2009 7:08:22 PMSubject: Newbie

I am 31 years old and just recently diagnosed with pulmonary fibrosis.I started having trouble breathing whenever I did the slightest thing.I also keep getting lung infections. I have a chronic cough. I wasjust wondering about others with pulmonary fibrosis.

[Guest guest]

I've just come across the web site, and ordered Dr. Gottschall's

book. I printed out the legal/illegal foods list, but didn't

see whey. I know this is derived from milk, but is it acceptable?

Thanks.

Rose in NJ