Re: Re: Been lurking for awhile.

[Guest guest]

Wayne,

Kudos to your doctor for wanting to send you to Medical University of SC. It sounds like a good idea to me too.

If however you end up at Duke I can give it high marks. I live in Durham NC and Duke is where I get my care. I'm extremely satisfied with the knowledge and expertise of the physicians I've used there.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, March 25, 2009 2:46:14 PMSubject: Re: Been lurking for awhile.

I live in upstate SC. My doc wants to send me to Medical University of SC in May. She said they have a specialist that works exclusivly with RA lung deseases. They are doing drug trials that look promising. If that doesn't do me any good, she said she will refer me to Duke in NC. >> 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> > > > > ____________ _________ _________ __> From: spideyman55 <wlfurr55@.. .>> To: Breathe-Support@ yahoogroups. com> Sent: Wednesday, March 25, 2009 10:15:16 AM> Subject: 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]

oh my gosh, they just sent me for for blood test for RA thanks for the info Kay R.52.ipf.09,PA

To: Breathe-Support Sent: Wednesday, March 25, 2009 2:32:29 PMSubject: Re: Been lurking for awhile.

RA is Rheumatoid Arthritis. I was diagnosed with RA 6 years ago. Doc told me about 10-20% of RA patients eventually develope UIP.- In Breathe-Support@ yahoogroups. com, Beverly Romich <kayromich@. ..> wrote:>> hi wayne i'm a newby too welcome. what is RA?? > Kay R.52.ipf.09, PA > > > > > ____________ _________ _________ __> From: spideyman55 <wlfurr55@.. .>> To: Breathe-Support@ yahoogroups. com> Sent: Wednesday, March 25, 2009 10:15:16 AM> Subject: 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]

oh my gosh, they just sent me for for blood test for RA thanks for the info Kay R.52.ipf.09,PA

To: Breathe-Support Sent: Wednesday, March 25, 2009 2:32:29 PMSubject: Re: Been lurking for awhile.

RA is Rheumatoid Arthritis. I was diagnosed with RA 6 years ago. Doc told me about 10-20% of RA patients eventually develope UIP.- In Breathe-Support@ yahoogroups. com, Beverly Romich <kayromich@. ..> wrote:>> hi wayne i'm a newby too welcome. what is RA?? > Kay R.52.ipf.09, PA > > > > > ____________ _________ _________ __> From: spideyman55 <wlfurr55@.. .>> To: Breathe-Support@ yahoogroups. com> Sent: Wednesday, March 25, 2009 10:15:16 AM> Subject: 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]

oh my gosh, they just sent me for for blood test for RA thanks for the info Kay R.52.ipf.09,PA

To: Breathe-Support Sent: Wednesday, March 25, 2009 2:32:29 PMSubject: Re: Been lurking for awhile.

RA is Rheumatoid Arthritis. I was diagnosed with RA 6 years ago. Doc told me about 10-20% of RA patients eventually develope UIP.- In Breathe-Support@ yahoogroups. com, Beverly Romich <kayromich@. ..> wrote:>> hi wayne i'm a newby too welcome. what is RA?? > Kay R.52.ipf.09, PA > > > > > ____________ _________ _________ __> From: spideyman55 <wlfurr55@.. .>> To: Breathe-Support@ yahoogroups. com> Sent: Wednesday, March 25, 2009 10:15:16 AM> Subject: 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.>