Re: Been lurking for awhile.

[Guest guest]

hi wayne i'm a newby too welcome. what is RA?? Kay R.52.ipf.09,PA

To: Breathe-Support Sent: Wednesday, March 25, 2009 10:15:16 AMSubject: Been lurking for awhile.

Hello,I found this site a couple months ago and have been just a lurker while I have been having test after test run. Finally, Monday, it was confirmed that I had RA-UIP. I don't know too much about it except the Last DR I saw was pretty good about explaining things. She indicated that the median life expectancy for this is about 2-3 years. That just seems stange to me because I have very little symptoms that anyhting is wrong (slight shortness of breath when exerting). Is this normal? Can I expect the symptoms to come quickly or gradually? I am a 55 year old male in otherwise great shape, so the docs have said I was an excellent lung transplant candidate. But I read on one of the RA web sites that it was hard for RA patients to get approved for transplant becase of the fear the RA would just damage the new lung. Real name is Wayne. I have been enjoying the posts. Glad this site is here.

[Guest guest]

hi wayne i'm a newby too welcome. what is RA?? Kay R.52.ipf.09,PA

To: Breathe-Support Sent: Wednesday, March 25, 2009 10:15:16 AMSubject: Been lurking for awhile.

Hello,I found this site a couple months ago and have been just a lurker while I have been having test after test run. Finally, Monday, it was confirmed that I had RA-UIP. I don't know too much about it except the Last DR I saw was pretty good about explaining things. She indicated that the median life expectancy for this is about 2-3 years. That just seems stange to me because I have very little symptoms that anyhting is wrong (slight shortness of breath when exerting). Is this normal? Can I expect the symptoms to come quickly or gradually? I am a 55 year old male in otherwise great shape, so the docs have said I was an excellent lung transplant candidate. But I read on one of the RA web sites that it was hard for RA patients to get approved for transplant becase of the fear the RA would just damage the new lung. Real name is Wayne. I have been enjoying the posts. Glad this site is here.

[Guest guest]

Hi, Wayne and Kay! Sorry that you need us, but glad you have found us. I was diagnosed with IPF in September 08, and am very much still learning stuff. I defer to those on the site that know whereof they speak - but I just wanted to welcome you. You will find answers here, and warm and caring people.

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Wednesday, March 25, 2009 10:23:42 AMSubject: Re: Been lurking for awhile.

hi wayne i'm a newby too welcome. what is RA?? Kay R.52.ipf.09, PA

From: spideyman55 <wlfurr55 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, March 25, 2009 10:15:16 AMSubject: Been lurking for awhile.

Hello,I found this site a couple months ago and have been just a lurker while I have been having test after test run. Finally, Monday, it was confirmed that I had RA-UIP. I don't know too much about it except the Last DR I saw was pretty good about explaining things. She indicated that the median life expectancy for this is about 2-3 years. That just seems stange to me because I have very little symptoms that anyhting is wrong (slight shortness of breath when exerting). Is this normal? Can I expect the symptoms to come quickly or gradually? I am a 55 year old male in otherwise great shape, so the docs have said I was an excellent lung transplant candidate. But I read on one of the RA web sites that it was hard for RA patients to get approved for transplant becase of the fear the RA would just damage the new lung. Real name is Wayne. I have been enjoying the posts. Glad this site is here.

[Guest guest]

Hi, Wayne and Kay! Sorry that you need us, but glad you have found us. I was diagnosed with IPF in September 08, and am very much still learning stuff. I defer to those on the site that know whereof they speak - but I just wanted to welcome you. You will find answers here, and warm and caring people.

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Wednesday, March 25, 2009 10:23:42 AMSubject: Re: Been lurking for awhile.

hi wayne i'm a newby too welcome. what is RA?? Kay R.52.ipf.09, PA

From: spideyman55 <wlfurr55 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, March 25, 2009 10:15:16 AMSubject: Been lurking for awhile.

Hello,I found this site a couple months ago and have been just a lurker while I have been having test after test run. Finally, Monday, it was confirmed that I had RA-UIP. I don't know too much about it except the Last DR I saw was pretty good about explaining things. She indicated that the median life expectancy for this is about 2-3 years. That just seems stange to me because I have very little symptoms that anyhting is wrong (slight shortness of breath when exerting). Is this normal? Can I expect the symptoms to come quickly or gradually? I am a 55 year old male in otherwise great shape, so the docs have said I was an excellent lung transplant candidate. But I read on one of the RA web sites that it was hard for RA patients to get approved for transplant becase of the fear the RA would just damage the new lung. Real name is Wayne. I have been enjoying the posts. Glad this site is here.

[Guest guest]

Wayne,

Welcome to the board! We always say we're sorry you had reason to look for this type of resource but since you did, we're glad you found us.

I am sorry about your diagnosis. This disease stinks but I can tell you one thing, when a doctor quotes statistics and median life expectancy please take it with a grain of salt. You are not a statisic, you are yourself and no one knows how long you will live. I was diagnosed nearly 3 years ago at a more advanced level of disease than you. I was put on oxygen 24/7 at that time and have been on it since. I've also been stable since then.

One suggestion I would make is to get a second opinion. I don't know where you live but if you are in the states I would strongly recommend you get yourself to a university medical center with physicians who specialize in interstitial lung disease. If you tell us what part of the country you live in we can give you some ideas of where you might go. This group of diseases is fairly rare and the average pulmo does not see alot of it. It can help to get help from someone who sees this type of lung disease every day.

In the meantime, take excellent care of yourself, rest when you need to, eat well and be kind to you. Please ask any questions that come into your head. Don't feel that anything is silly or trivial. We've all been in your shoes! Welcome once again!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, March 25, 2009 10:15:16 AMSubject: Been lurking for awhile.

Hello,I found this site a couple months ago and have been just a lurker while I have been having test after test run. Finally, Monday, it was confirmed that I had RA-UIP. I don't know too much about it except the Last DR I saw was pretty good about explaining things. She indicated that the median life expectancy for this is about 2-3 years. That just seems stange to me because I have very little symptoms that anyhting is wrong (slight shortness of breath when exerting). Is this normal? Can I expect the symptoms to come quickly or gradually? I am a 55 year old male in otherwise great shape, so the docs have said I was an excellent lung transplant candidate. But I read on one of the RA web sites that it was hard for RA patients to get approved for transplant becase of the fear the RA would just damage the new lung. Real name is Wayne. I have been enjoying the posts. Glad this site is here.

[Guest guest]

Wayne,

Welcome to the board! We always say we're sorry you had reason to look for this type of resource but since you did, we're glad you found us.

I am sorry about your diagnosis. This disease stinks but I can tell you one thing, when a doctor quotes statistics and median life expectancy please take it with a grain of salt. You are not a statisic, you are yourself and no one knows how long you will live. I was diagnosed nearly 3 years ago at a more advanced level of disease than you. I was put on oxygen 24/7 at that time and have been on it since. I've also been stable since then.

One suggestion I would make is to get a second opinion. I don't know where you live but if you are in the states I would strongly recommend you get yourself to a university medical center with physicians who specialize in interstitial lung disease. If you tell us what part of the country you live in we can give you some ideas of where you might go. This group of diseases is fairly rare and the average pulmo does not see alot of it. It can help to get help from someone who sees this type of lung disease every day.

In the meantime, take excellent care of yourself, rest when you need to, eat well and be kind to you. Please ask any questions that come into your head. Don't feel that anything is silly or trivial. We've all been in your shoes! Welcome once again!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, March 25, 2009 10:15:16 AMSubject: Been lurking for awhile.

Hello,I found this site a couple months ago and have been just a lurker while I have been having test after test run. Finally, Monday, it was confirmed that I had RA-UIP. I don't know too much about it except the Last DR I saw was pretty good about explaining things. She indicated that the median life expectancy for this is about 2-3 years. That just seems stange to me because I have very little symptoms that anyhting is wrong (slight shortness of breath when exerting). Is this normal? Can I expect the symptoms to come quickly or gradually? I am a 55 year old male in otherwise great shape, so the docs have said I was an excellent lung transplant candidate. But I read on one of the RA web sites that it was hard for RA patients to get approved for transplant becase of the fear the RA would just damage the new lung. Real name is Wayne. I have been enjoying the posts. Glad this site is here.

[Guest guest]

Hi Wayne and Kay, from me too. Do we now have two Kays??

I was dx (diagnosed) March '06 and remained fairly stable until just recently.

I started out thinking I was out of shape and overweight, causing the sob (shortness of breath).

There are over 200 strains of PF, IPF being most common if dr doesn't know what type we have. An open lung bio is the only way to be sure and even then it's sometimes unclear...I opt out of lung bio...I'm too old.

I was recently changed to NSIP but it's all in the same basket.

You are both in a good place now. Lots of info. and support.

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

Been lurking for awhile.

Hello,I found this site a couple months ago and have been just a lurker while I have been having test after test run. Finally, Monday, it was confirmed that I had RA-UIP. I don't know too much about it except the Last DR I saw was pretty good about explaining things. She indicated that the median life expectancy for this is about 2-3 years. That just seems stange to me because I have very little symptoms that anyhting is wrong (slight shortness of breath when exerting). Is this normal? Can I expect the symptoms to come quickly or gradually? I am a 55 year old male in otherwise great shape, so the docs have said I was an excellent lung transplant candidate. But I read on one of the RA web sites that it was hard for RA patients to get approved for transplant becase of the fear the RA would just damage the new lung. Real name is Wayne. I have been enjoying the posts. Glad this site is here.

[Guest guest]

Sher

there are 2 beverly's -- Beverly Joy and Beverly R

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: Been lurking for awhile.To: Breathe-Support Date: Wednesday, March 25, 2009, 2:49 PM

Hi Wayne and Kay, from me too. Do we now have two Kays??

I was dx (diagnosed) March '06 and remained fairly stable until just recently.

I started out thinking I was out of shape and overweight, causing the sob (shortness of breath).

There are over 200 strains of PF, IPF being most common if dr doesn't know what type we have. An open lung bio is the only way to be sure and even then it's sometimes unclear...I opt out of lung bio...I'm too old.

I was recently changed to NSIP but it's all in the same basket.

You are both in a good place now. Lots of info. and support.

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

Been lurking for awhile.

Hello,I found this site a couple months ago and have been just a lurker while I have been having test after test run. Finally, Monday, it was confirmed that I had RA-UIP. I don't know too much about it except the Last DR I saw was pretty good about explaining things. She indicated that the median life expectancy for this is about 2-3 years. That just seems stange to me because I have very little symptoms that anyhting is wrong (slight shortness of breath when exerting). Is this normal? Can I expect the symptoms to come quickly or gradually? I am a 55 year old male in otherwise great shape, so the docs have said I was an excellent lung transplant candidate. But I read on one of the RA web sites that it was hard for RA patients to get approved for transplant becase of the fear the RA would just damage the new lung. Real name is Wayne. I have been enjoying the posts. Glad this site is here.

[Guest guest]

Sher

there are 2 beverly's -- Beverly Joy and Beverly R

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: Been lurking for awhile.To: Breathe-Support Date: Wednesday, March 25, 2009, 2:49 PM

Hi Wayne and Kay, from me too. Do we now have two Kays??

I was dx (diagnosed) March '06 and remained fairly stable until just recently.

I started out thinking I was out of shape and overweight, causing the sob (shortness of breath).

There are over 200 strains of PF, IPF being most common if dr doesn't know what type we have. An open lung bio is the only way to be sure and even then it's sometimes unclear...I opt out of lung bio...I'm too old.

I was recently changed to NSIP but it's all in the same basket.

You are both in a good place now. Lots of info. and support.

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

Been lurking for awhile.

Hello,I found this site a couple months ago and have been just a lurker while I have been having test after test run. Finally, Monday, it was confirmed that I had RA-UIP. I don't know too much about it except the Last DR I saw was pretty good about explaining things. She indicated that the median life expectancy for this is about 2-3 years. That just seems stange to me because I have very little symptoms that anyhting is wrong (slight shortness of breath when exerting). Is this normal? Can I expect the symptoms to come quickly or gradually? I am a 55 year old male in otherwise great shape, so the docs have said I was an excellent lung transplant candidate. But I read on one of the RA web sites that it was hard for RA patients to get approved for transplant becase of the fear the RA would just damage the new lung. Real name is Wayne. I have been enjoying the posts. Glad this site is here.

[Guest guest]

Sher

there are 2 beverly's -- Beverly Joy and Beverly R

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: Been lurking for awhile.To: Breathe-Support Date: Wednesday, March 25, 2009, 2:49 PM

Hi Wayne and Kay, from me too. Do we now have two Kays??

I was dx (diagnosed) March '06 and remained fairly stable until just recently.

I started out thinking I was out of shape and overweight, causing the sob (shortness of breath).

There are over 200 strains of PF, IPF being most common if dr doesn't know what type we have. An open lung bio is the only way to be sure and even then it's sometimes unclear...I opt out of lung bio...I'm too old.

I was recently changed to NSIP but it's all in the same basket.

You are both in a good place now. Lots of info. and support.

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

Been lurking for awhile.

Hello,I found this site a couple months ago and have been just a lurker while I have been having test after test run. Finally, Monday, it was confirmed that I had RA-UIP. I don't know too much about it except the Last DR I saw was pretty good about explaining things. She indicated that the median life expectancy for this is about 2-3 years. That just seems stange to me because I have very little symptoms that anyhting is wrong (slight shortness of breath when exerting). Is this normal? Can I expect the symptoms to come quickly or gradually? I am a 55 year old male in otherwise great shape, so the docs have said I was an excellent lung transplant candidate. But I read on one of the RA web sites that it was hard for RA patients to get approved for transplant becase of the fear the RA would just damage the new lung. Real name is Wayne. I have been enjoying the posts. Glad this site is here.

[Guest guest]

hi sher im from pa , i don't know if theres more then one kay i don't think so,,, any way i am so glad to be on this board and have new driends to talk to .my family is in denial .

Kay R.52.ipf.09,PA

To: Breathe-Support Sent: Wednesday, March 25, 2009 2:49:22 PMSubject: Re: Been lurking for awhile.

Hi Wayne and Kay, from me too.. Do we now have two Kays??

I was dx (diagnosed) March '06 and remained fairly stable until just recently.

I started out thinking I was out of shape and overweight, causing the sob (shortness of breath).

There are over 200 strains of PF, IPF being most common if dr doesn't know what type we have. An open lung bio is the only way to be sure and even then it's sometimes unclear...I opt out of lung bio...I'm too old.

I was recently changed to NSIP but it's all in the same basket.

You are both in a good place now. Lots of info. and support.

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

Been lurking for awhile.

Hello,I found this site a couple months ago and have been just a lurker while I have been having test after test run. Finally, Monday, it was confirmed that I had RA-UIP. I don't know too much about it except the Last DR I saw was pretty good about explaining things. She indicated that the median life expectancy for this is about 2-3 years. That just seems stange to me because I have very little symptoms that anyhting is wrong (slight shortness of breath when exerting). Is this normal? Can I expect the symptoms to come quickly or gradually? I am a 55 year old male in otherwise great shape, so the docs have said I was an excellent lung transplant candidate. But I read on one of the RA web sites that it was hard for RA patients to get approved for transplant becase of the fear the RA would just damage the new lung. Real name is Wayne. I have been enjoying the posts. Glad this site is here.

[Guest guest]

hi sher im from pa , i don't know if theres more then one kay i don't think so,,, any way i am so glad to be on this board and have new driends to talk to .my family is in denial .

Kay R.52.ipf.09,PA

To: Breathe-Support Sent: Wednesday, March 25, 2009 2:49:22 PMSubject: Re: Been lurking for awhile.

Hi Wayne and Kay, from me too.. Do we now have two Kays??

I was dx (diagnosed) March '06 and remained fairly stable until just recently.

I started out thinking I was out of shape and overweight, causing the sob (shortness of breath).

There are over 200 strains of PF, IPF being most common if dr doesn't know what type we have. An open lung bio is the only way to be sure and even then it's sometimes unclear...I opt out of lung bio...I'm too old.

I was recently changed to NSIP but it's all in the same basket.

You are both in a good place now. Lots of info. and support.

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

Been lurking for awhile.

Hello,I found this site a couple months ago and have been just a lurker while I have been having test after test run. Finally, Monday, it was confirmed that I had RA-UIP. I don't know too much about it except the Last DR I saw was pretty good about explaining things. She indicated that the median life expectancy for this is about 2-3 years. That just seems stange to me because I have very little symptoms that anyhting is wrong (slight shortness of breath when exerting). Is this normal? Can I expect the symptoms to come quickly or gradually? I am a 55 year old male in otherwise great shape, so the docs have said I was an excellent lung transplant candidate. But I read on one of the RA web sites that it was hard for RA patients to get approved for transplant becase of the fear the RA would just damage the new lung. Real name is Wayne. I have been enjoying the posts. Glad this site is here.

[Guest guest]

hi sher im from pa , i don't know if theres more then one kay i don't think so,,, any way i am so glad to be on this board and have new driends to talk to .my family is in denial .

Kay R.52.ipf.09,PA

To: Breathe-Support Sent: Wednesday, March 25, 2009 2:49:22 PMSubject: Re: Been lurking for awhile.

Hi Wayne and Kay, from me too.. Do we now have two Kays??

I was dx (diagnosed) March '06 and remained fairly stable until just recently.

I started out thinking I was out of shape and overweight, causing the sob (shortness of breath).

There are over 200 strains of PF, IPF being most common if dr doesn't know what type we have. An open lung bio is the only way to be sure and even then it's sometimes unclear...I opt out of lung bio...I'm too old.

I was recently changed to NSIP but it's all in the same basket.

You are both in a good place now. Lots of info. and support.

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

Been lurking for awhile.

Hello,I found this site a couple months ago and have been just a lurker while I have been having test after test run. Finally, Monday, it was confirmed that I had RA-UIP. I don't know too much about it except the Last DR I saw was pretty good about explaining things. She indicated that the median life expectancy for this is about 2-3 years. That just seems stange to me because I have very little symptoms that anyhting is wrong (slight shortness of breath when exerting). Is this normal? Can I expect the symptoms to come quickly or gradually? I am a 55 year old male in otherwise great shape, so the docs have said I was an excellent lung transplant candidate. But I read on one of the RA web sites that it was hard for RA patients to get approved for transplant becase of the fear the RA would just damage the new lung. Real name is Wayne. I have been enjoying the posts. Glad this site is here.

[Guest guest]

Kay,

There's only one Kay around here so that will work fine! I'm glad you are finding support and friendship here. Many of us have family members and friends who can't seem to get their minds around our illness. They don't understand it, it makes them uncomfortable so they often choose to just pretend it isn't there. Frustrating isn't it?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thursday, March 26, 2009 8:36:32 AMSubject: Re: Been lurking for awhile.

hi sher im from pa , i don't know if theres more then one kay i don't think so,,, any way i am so glad to be on this board and have new driends to talk to .my family is in denial .

Kay R.52.ipf.09, PA

From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Wednesday, March 25, 2009 2:49:22 PMSubject: Re: Been lurking for awhile.

Hi Wayne and Kay, from me too.. Do we now have two Kays??

I was dx (diagnosed) March '06 and remained fairly stable until just recently.

I started out thinking I was out of shape and overweight, causing the sob (shortness of breath).

There are over 200 strains of PF, IPF being most common if dr doesn't know what type we have. An open lung bio is the only way to be sure and even then it's sometimes unclear...I opt out of lung bio...I'm too old.

I was recently changed to NSIP but it's all in the same basket.

You are both in a good place now. Lots of info. and support.

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

Been lurking for awhile.

Hello,I found this site a couple months ago and have been just a lurker while I have been having test after test run. Finally, Monday, it was confirmed that I had RA-UIP. I don't know too much about it except the Last DR I saw was pretty good about explaining things. She indicated that the median life expectancy for this is about 2-3 years. That just seems stange to me because I have very little symptoms that anyhting is wrong (slight shortness of breath when exerting). Is this normal? Can I expect the symptoms to come quickly or gradually? I am a 55 year old male in otherwise great shape, so the docs have said I was an excellent lung transplant candidate. But I read on one of the RA web sites that it was hard for RA patients to get approved for transplant becase of the fear the RA would just damage the new lung. Real name is Wayne. I have been enjoying the posts. Glad this site is here.

[Guest guest]

Kay: Sometimes, even I don't think I'm sick, so I can't blame anybody if they think I seem perfectly healthy. It does feel bad, though, when you don't get the validation and support you need from others. But we are here, and we understand!

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Thursday, March 26, 2009 8:42:30 AMSubject: Re: Been lurking for awhile.

Kay,

There's only one Kay around here so that will work fine! I'm glad you are finding support and friendship here. Many of us have family members and friends who can't seem to get their minds around our illness. They don't understand it, it makes them uncomfortable so they often choose to just pretend it isn't there. Frustrating isn't it?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Beverly Romich <kayromich (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, March 26, 2009 8:36:32 AMSubject: Re: Been lurking for awhile.

hi sher im from pa , i don't know if theres more then one kay i don't think so,,, any way i am so glad to be on this board and have new driends to talk to .my family is in denial .

Kay R.52.ipf.09, PA

From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Wednesday, March 25, 2009 2:49:22 PMSubject: Re: Been lurking for awhile.

Hi Wayne and Kay, from me too.. Do we now have two Kays??

I was dx (diagnosed) March '06 and remained fairly stable until just recently.

I started out thinking I was out of shape and overweight, causing the sob (shortness of breath).

There are over 200 strains of PF, IPF being most common if dr doesn't know what type we have. An open lung bio is the only way to be sure and even then it's sometimes unclear...I opt out of lung bio...I'm too old.

I was recently changed to NSIP but it's all in the same basket.

You are both in a good place now. Lots of info. and support.

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

Been lurking for awhile.

Hello,I found this site a couple months ago and have been just a lurker while I have been having test after test run. Finally, Monday, it was confirmed that I had RA-UIP. I don't know too much about it except the Last DR I saw was pretty good about explaining things. She indicated that the median life expectancy for this is about 2-3 years. That just seems stange to me because I have very little symptoms that anyhting is wrong (slight shortness of breath when exerting). Is this normal? Can I expect the symptoms to come quickly or gradually? I am a 55 year old male in otherwise great shape, so the docs have said I was an excellent lung transplant candidate. But I read on one of the RA web sites that it was hard for RA patients to get approved for transplant becase of the fear the RA would just damage the new lung. Real name is Wayne. I have been enjoying the posts. Glad this site is here.

[Guest guest]

thanks joyce , There are so many things to explore . My doctor just did blood work for lupus and RA. Is there a link to these diseases and ipf?

KAY R.52.ipf.09,PA

To: Breathe-Support Sent: Wednesday, March 25, 2009 7:37:20 PMSubject: Re: Been lurking for awhile.

i think RA is rheumatoid arthritis, an auto immune disease

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund. org

From: Beverly Romich <kayromich (AT) yahoo (DOT) com>Subject: Re: Been lurking for awhile.To: Breathe-Support@ yahoogroups. comDate: Wednesday, March 25, 2009, 10:23 AM

hi wayne i'm a newby too welcome. what is RA?? Kay R.52.ipf.09, PA

From: spideyman55 <wlfurr55 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, March 25, 2009 10:15:16 AMSubject: Been lurking for awhile.

Hello,I found this site a couple months ago and have been just a lurker while I have been having test after test run. Finally, Monday, it was confirmed that I had RA-UIP. I don't know too much about it except the Last DR I saw was pretty good about explaining things. She indicated that the median life expectancy for this is about 2-3 years. That just seems stange to me because I have very little symptoms that anyhting is wrong (slight shortness of breath when exerting). Is this normal? Can I expect the symptoms to come quickly or gradually? I am a 55 year old male in otherwise great shape, so the docs have said I was an excellent lung transplant candidate. But I read on one of the RA web sites that it was hard for RA patients to get approved for transplant becase of the fear the RA would just damage the new lung. Real name is Wayne. I have been enjoying the posts. Glad this site is here.

[Guest guest]

thank you mary beth , I am going for HIGH RESOLUTION CAT SCAN NEXT WEEK , then pft's with a blood gas check.

Kay R.52.ipf.09,PA

To: Breathe-Support Sent: Thursday, March 26, 2009 8:42:30 AMSubject: Re: Been lurking for awhile.

Kay,

There's only one Kay around here so that will work fine! I'm glad you are finding support and friendship here. Many of us have family members and friends who can't seem to get their minds around our illness. They don't understand it, it makes them uncomfortable so they often choose to just pretend it isn't there. Frustrating isn't it?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Beverly Romich <kayromich (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, March 26, 2009 8:36:32 AMSubject: Re: Been lurking for awhile.

hi sher im from pa , i don't know if theres more then one kay i don't think so,,, any way i am so glad to be on this board and have new driends to talk to .my family is in denial .

Kay R.52.ipf.09, PA

From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Wednesday, March 25, 2009 2:49:22 PMSubject: Re: Been lurking for awhile.

Hi Wayne and Kay, from me too.. Do we now have two Kays??

I was dx (diagnosed) March '06 and remained fairly stable until just recently.

I started out thinking I was out of shape and overweight, causing the sob (shortness of breath).

There are over 200 strains of PF, IPF being most common if dr doesn't know what type we have. An open lung bio is the only way to be sure and even then it's sometimes unclear...I opt out of lung bio...I'm too old.

I was recently changed to NSIP but it's all in the same basket.

You are both in a good place now. Lots of info. and support.

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

Been lurking for awhile.

Hello,I found this site a couple months ago and have been just a lurker while I have been having test after test run. Finally, Monday, it was confirmed that I had RA-UIP. I don't know too much about it except the Last DR I saw was pretty good about explaining things. She indicated that the median life expectancy for this is about 2-3 years. That just seems stange to me because I have very little symptoms that anyhting is wrong (slight shortness of breath when exerting). Is this normal? Can I expect the symptoms to come quickly or gradually? I am a 55 year old male in otherwise great shape, so the docs have said I was an excellent lung transplant candidate. But I read on one of the RA web sites that it was hard for RA patients to get approved for transplant becase of the fear the RA would just damage the new lung. Real name is Wayne. I have been enjoying the posts. Glad this site is here.

[Guest guest]

Thanks Barbara, I'm gladto be on this board with people to talk to about this disease. I do feel alone alot and afraid of what is next.I still can't believe this is real and I worry about my kids,,,can I pass this disease on to my kids.?? Is it in my genetic makeup, how did i get this??

God bless everyone and give us courage .

Kay R.52.ipf.09,PA

To: Breathe-Support Sent: Thursday, March 26, 2009 8:58:05 AMSubject: Re: Been lurking for awhile.

Kay: Sometimes, even I don't think I'm sick, so I can't blame anybody if they think I seem perfectly healthy. It does feel bad, though, when you don't get the validation and support you need from others. But we are here, and we understand!

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, March 26, 2009 8:42:30 AMSubject: Re: Been lurking for awhile.

Kay,

There's only one Kay around here so that will work fine! I'm glad you are finding support and friendship here. Many of us have family members and friends who can't seem to get their minds around our illness. They don't understand it, it makes them uncomfortable so they often choose to just pretend it isn't there. Frustrating isn't it?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Beverly Romich <kayromich (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, March 26, 2009 8:36:32 AMSubject: Re: Been lurking for awhile.

hi sher im from pa , i don't know if theres more then one kay i don't think so,,, any way i am so glad to be on this board and have new driends to talk to .my family is in denial .

Kay R.52.ipf.09, PA

From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Wednesday, March 25, 2009 2:49:22 PMSubject: Re: Been lurking for awhile.

Hi Wayne and Kay, from me too.. Do we now have two Kays??

I was dx (diagnosed) March '06 and remained fairly stable until just recently.

I started out thinking I was out of shape and overweight, causing the sob (shortness of breath).

There are over 200 strains of PF, IPF being most common if dr doesn't know what type we have. An open lung bio is the only way to be sure and even then it's sometimes unclear...I opt out of lung bio...I'm too old.

I was recently changed to NSIP but it's all in the same basket.

You are both in a good place now. Lots of info. and support.

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

Been lurking for awhile.

Hello,I found this site a couple months ago and have been just a lurker while I have been having test after test run. Finally, Monday, it was confirmed that I had RA-UIP. I don't know too much about it except the Last DR I saw was pretty good about explaining things. She indicated that the median life expectancy for this is about 2-3 years. That just seems stange to me because I have very little symptoms that anyhting is wrong (slight shortness of breath when exerting). Is this normal? Can I expect the symptoms to come quickly or gradually? I am a 55 year old male in otherwise great shape, so the docs have said I was an excellent lung transplant candidate. But I read on one of the RA web sites that it was hard for RA patients to get approved for transplant becase of the fear the RA would just damage the new lung. Real name is Wayne. I have been enjoying the posts. Glad this site is here.

[Guest guest]

Hi Wayne and Kay,

I haven't posted in awhile, have been going through lots of tests, too. Just wanted to say welcome to the group. There is no better place you could be right now!! CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Thursday, March 26, 2009 8:31:52 AMSubject: Re: Been lurking for awhile.

Thanks Barbara, I'm gladto be on this board with people to talk to about this disease. I do feel alone alot and afraid of what is next.I still can't believe this is real and I worry about my kids,,,can I pass this disease on to my kids.?? Is it in my genetic makeup, how did i get this??

God bless everyone and give us courage .

Kay R.52.ipf.09, PA

From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, March 26, 2009 8:58:05 AMSubject: Re: Been lurking for awhile.

Kay: Sometimes, even I don't think I'm sick, so I can't blame anybody if they think I seem perfectly healthy. It does feel bad, though, when you don't get the validation and support you need from others. But we are here, and we understand!

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, March 26, 2009 8:42:30 AMSubject: Re: Been lurking for awhile.

Kay,

There's only one Kay around here so that will work fine! I'm glad you are finding support and friendship here. Many of us have family members and friends who can't seem to get their minds around our illness. They don't understand it, it makes them uncomfortable so they often choose to just pretend it isn't there. Frustrating isn't it?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Beverly Romich <kayromich (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, March 26, 2009 8:36:32 AMSubject: Re: Been lurking for awhile.

hi sher im from pa , i don't know if theres more then one kay i don't think so,,, any way i am so glad to be on this board and have new driends to talk to .my family is in denial .

Kay R.52.ipf.09, PA

From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Wednesday, March 25, 2009 2:49:22 PMSubject: Re: Been lurking for awhile.

Hi Wayne and Kay, from me too.. Do we now have two Kays??

I was dx (diagnosed) March '06 and remained fairly stable until just recently.

I started out thinking I was out of shape and overweight, causing the sob (shortness of breath).

There are over 200 strains of PF, IPF being most common if dr doesn't know what type we have. An open lung bio is the only way to be sure and even then it's sometimes unclear...I opt out of lung bio...I'm too old.

I was recently changed to NSIP but it's all in the same basket.

You are both in a good place now. Lots of info. and support.

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

Been lurking for awhile.

Hello,I found this site a couple months ago and have been just a lurker while I have been having test after test run. Finally, Monday, it was confirmed that I had RA-UIP. I don't know too much about it except the Last DR I saw was pretty good about explaining things. She indicated that the median life expectancy for this is about 2-3 years. That just seems stange to me because I have very little symptoms that anyhting is wrong (slight shortness of breath when exerting). Is this normal? Can I expect the symptoms to come quickly or gradually? I am a 55 year old male in otherwise great shape, so the docs have said I was an excellent lung transplant candidate. But I read on one of the RA web sites that it was hard for RA patients to get approved for transplant becase of the fear the RA would just damage the new lung. Real name is Wayne. I have been enjoying the posts. Glad this site is here.