Re: Re: Tom Terrill / lung transplants

[Guest guest]

Bruce ... I've noticed you mentioning a Rheumatologist frequently. Will you share with me please the reasons you see such a DR. I thought they are primarily for arthritis and such....thanks

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

Re: Tom Terrill / lung transplants

LeanneYes, Unos is where I got my information and it definitely shows thepractices of the various centers. Just a reminder to everyone to notaccept no from anyone other than the transplant center and, even then,there are other centers to talk to.It's also a reminder than many doctors and many pulmonologists know verylittle about PF and transplants and related subjects. There are somegreat pulmonologists out there and great medical centers but they are inthe minority and you have to search. Second opinions are essential. Eventhird. Any doctor who has a problem with you getting a second opinionshould be changed. My pulmonologist encouraged my visit to a Center ofExcellence. My rheumatologist is almost obsessive but he picked the bestrheumatologist he knew and referred me for a second opinion to his andhe referred me to a second neurologist who is knowledgeable aboutconnective tissue diseases and to my oncologist over other readings.Now, thats a lot of doctors, but it's sure better than one who believeshe knows it all.If you leave a doctor's office feeling uncomfortable in the treatment,there is probably good reason for that. At best, there is a failure incommunication.Everyone is a transplant candidate until told no by one or perhaps morecenters. Now, you will know if their refusal makes sense or not.Leanne.....do you know anyone who has had a lung and heart transplant? Iknow they are occasionally done.>> Hi,> I just had to pipe in about Tom Terrill as he is on our Board of> Directors and is a friend of mine. He's doing pheonomenally well> after transplant. He came out to our support group and gave the> members hope. And as the discussion is going, different hospitals> have different criteria for lung transplantations. Just because you've> been turned down at one doesn't mean another hospital will accept you.> A good website to check out is www.unos.org. The website has a lot of> valuable information on lung transplantation. Another one of our> Board members had a transplant last year @ age 71 at the University of> land. He is also doing very very well. Keep the faith. Don't give> up.>> Leanne>

[Guest guest]

Bruce ... I've noticed you mentioning a Rheumatologist frequently. Will you share with me please the reasons you see such a DR. I thought they are primarily for arthritis and such....thanks

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

Re: Tom Terrill / lung transplants

LeanneYes, Unos is where I got my information and it definitely shows thepractices of the various centers. Just a reminder to everyone to notaccept no from anyone other than the transplant center and, even then,there are other centers to talk to.It's also a reminder than many doctors and many pulmonologists know verylittle about PF and transplants and related subjects. There are somegreat pulmonologists out there and great medical centers but they are inthe minority and you have to search. Second opinions are essential. Eventhird. Any doctor who has a problem with you getting a second opinionshould be changed. My pulmonologist encouraged my visit to a Center ofExcellence. My rheumatologist is almost obsessive but he picked the bestrheumatologist he knew and referred me for a second opinion to his andhe referred me to a second neurologist who is knowledgeable aboutconnective tissue diseases and to my oncologist over other readings.Now, thats a lot of doctors, but it's sure better than one who believeshe knows it all.If you leave a doctor's office feeling uncomfortable in the treatment,there is probably good reason for that. At best, there is a failure incommunication.Everyone is a transplant candidate until told no by one or perhaps morecenters. Now, you will know if their refusal makes sense or not.Leanne.....do you know anyone who has had a lung and heart transplant? Iknow they are occasionally done.>> Hi,> I just had to pipe in about Tom Terrill as he is on our Board of> Directors and is a friend of mine. He's doing pheonomenally well> after transplant. He came out to our support group and gave the> members hope. And as the discussion is going, different hospitals> have different criteria for lung transplantations. Just because you've> been turned down at one doesn't mean another hospital will accept you.> A good website to check out is www.unos.org. The website has a lot of> valuable information on lung transplantation. Another one of our> Board members had a transplant last year @ age 71 at the University of> land. He is also doing very very well. Keep the faith. Don't give> up.>> Leanne>

[Guest guest]

Bruce ... I've noticed you mentioning a Rheumatologist frequently. Will you share with me please the reasons you see such a DR. I thought they are primarily for arthritis and such....thanks

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

Re: Tom Terrill / lung transplants

LeanneYes, Unos is where I got my information and it definitely shows thepractices of the various centers. Just a reminder to everyone to notaccept no from anyone other than the transplant center and, even then,there are other centers to talk to.It's also a reminder than many doctors and many pulmonologists know verylittle about PF and transplants and related subjects. There are somegreat pulmonologists out there and great medical centers but they are inthe minority and you have to search. Second opinions are essential. Eventhird. Any doctor who has a problem with you getting a second opinionshould be changed. My pulmonologist encouraged my visit to a Center ofExcellence. My rheumatologist is almost obsessive but he picked the bestrheumatologist he knew and referred me for a second opinion to his andhe referred me to a second neurologist who is knowledgeable aboutconnective tissue diseases and to my oncologist over other readings.Now, thats a lot of doctors, but it's sure better than one who believeshe knows it all.If you leave a doctor's office feeling uncomfortable in the treatment,there is probably good reason for that. At best, there is a failure incommunication.Everyone is a transplant candidate until told no by one or perhaps morecenters. Now, you will know if their refusal makes sense or not.Leanne.....do you know anyone who has had a lung and heart transplant? Iknow they are occasionally done.>> Hi,> I just had to pipe in about Tom Terrill as he is on our Board of> Directors and is a friend of mine. He's doing pheonomenally well> after transplant. He came out to our support group and gave the> members hope. And as the discussion is going, different hospitals> have different criteria for lung transplantations. Just because you've> been turned down at one doesn't mean another hospital will accept you.> A good website to check out is www.unos.org. The website has a lot of> valuable information on lung transplantation. Another one of our> Board members had a transplant last year @ age 71 at the University of> land. He is also doing very very well. Keep the faith. Don't give> up.>> Leanne>

[Guest guest]

Bruce... so a Rheumatologist is the one to dx a connective tissue disease? Wonder why a pulmodude or dudette could not do that as well, or a pcp?

Reason I ask: I'm seeing a Rheumy re: my arthritis/fibromyalgia. Thought of you (and others) who go for different reasons. Hence the question.

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

Re: Tom Terrill / lung transplants

SherThe doctor at the University of Chicago felt I probably had anunderlying connective tissue disease such as Undifferentiated ConnectiveTissue Disease or Polymyositis. Earlier doctors had not felt so. So, Iwent to a rheumatologist. I have many indications of a connective tissuedisease but so far he doesn't feel it warrants him making such adiagnosis. Neither does the second opinion rheumatologist he referred meto. So, so far, no connective tissue disease diagnosed but who knows ifone will surface at some point.> >> > Hi,> > I just had to pipe in about Tom Terrill as he is on our Board of> > Directors and is a friend of mine. He's doing pheonomenally well> > after transplant. He came out to our support group and gave the> > members hope. And as the discussion is going, different hospitals> > have different criteria for lung transplantations. Just becauseyou've> > been turned down at one doesn't mean another hospital will acceptyou.> > A good website to check out is www.unos.org. The website has a lotof> > valuable information on lung transplantation. Another one of our> > Board members had a transplant last year @ age 71 at the Universityof> > land. He is also doing very very well. Keep the faith. Don'tgive> > up.> >> > Leanne> >>

[Guest guest]

Bruce... so a Rheumatologist is the one to dx a connective tissue disease? Wonder why a pulmodude or dudette could not do that as well, or a pcp?

Reason I ask: I'm seeing a Rheumy re: my arthritis/fibromyalgia. Thought of you (and others) who go for different reasons. Hence the question.

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

Re: Tom Terrill / lung transplants

SherThe doctor at the University of Chicago felt I probably had anunderlying connective tissue disease such as Undifferentiated ConnectiveTissue Disease or Polymyositis. Earlier doctors had not felt so. So, Iwent to a rheumatologist. I have many indications of a connective tissuedisease but so far he doesn't feel it warrants him making such adiagnosis. Neither does the second opinion rheumatologist he referred meto. So, so far, no connective tissue disease diagnosed but who knows ifone will surface at some point.> >> > Hi,> > I just had to pipe in about Tom Terrill as he is on our Board of> > Directors and is a friend of mine. He's doing pheonomenally well> > after transplant. He came out to our support group and gave the> > members hope. And as the discussion is going, different hospitals> > have different criteria for lung transplantations. Just becauseyou've> > been turned down at one doesn't mean another hospital will acceptyou.> > A good website to check out is www.unos.org. The website has a lotof> > valuable information on lung transplantation. Another one of our> > Board members had a transplant last year @ age 71 at the Universityof> > land. He is also doing very very well. Keep the faith. Don'tgive> > up.> >> > Leanne> >>

[Guest guest]

OK Bruce, thanks for the info.

I'm signing off for today....bye all.

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

Re: Tom Terrill / lung transplants

SherThe others aren't experts in the field. Many times Pulmonologists dofirst determine you might have a connective tissue disease but thenrefer you to the Rheumatologist.> > >> > > Hi,> > > I just had to pipe in about Tom Terrill as he is on our Board of> > > Directors and is a friend of mine. He's doing pheonomenally well> > > after transplant. He came out to our support group and gave the> > > members hope. And as the discussion is going, different hospitals> > > have different criteria for lung transplantations. Just because> you've> > > been turned down at one doesn't mean another hospital will accept> you.> > > A good website to check out is www.unos.org. The website has a lot> of> > > valuable information on lung transplantation. Another one of our> > > Board members had a transplant last year @ age 71 at theUniversity> of> > > land. He is also doing very very well. Keep the faith. Don't> give> > > up.> > >> > > Leanne> > >> >>

[Guest guest]

Sher,

A rheumatologist treats many diseases and disorders. Arthritis and fibromyalgia are two of them and various other conditions of the joints, muscles and bones. They treat many auto-immune disorders, including lupus, polymyositis and dermatomysitis among them. At Duke the pulmonary clinic and rheumatology clinic are side by side and the doctors work very closely together. This is because so many of the diseases that a rheumatologist treats are implicated in causing long term lung damage such as various interstitial lung diseases like mine.

The answer to your other question is a pulmonologist can indeed diagnose these conditions but a rheumatologist specializes in them. I wouldn't go to just my pcp to be diagnosed and treated for my lung disease. (As a matter of fact my pcp in NY misdiagnosed my lung problems for over a year) I want a specialist for my connective tissue disease also.

Hope that helps clarify things a bit!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

To: Breathe-Support Sent: Friday, December 12, 2008 7:11:03 PMSubject: Re: Re: Tom Terrill / lung transplants

Bruce... so a Rheumatologist is the one to dx a connective tissue disease? Wonder why a pulmodude or dudette could not do that as well, or a pcp?

Reason I ask: I'm seeing a Rheumy re: my arthritis/fibromyal gia. Thought of you (and others) who go for different reasons. Hence the question.

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

Re: Tom Terrill / lung transplants

SherThe doctor at the University of Chicago felt I probably had anunderlying connective tissue disease such as Undifferentiated ConnectiveTissue Disease or Polymyositis. Earlier doctors had not felt so. So, Iwent to a rheumatologist. I have many indications of a connective tissuedisease but so far he doesn't feel it warrants him making such adiagnosis. Neither does the second opinion rheumatologist he referred meto. So, so far, no connective tissue disease diagnosed but who knows ifone will surface at some point.> >> > Hi,> > I just had to pipe in about Tom Terrill as he is on our Board of> > Directors and is a friend of mine. He's doing pheonomenally well> > after transplant. He came out to our support group and gave the> > members hope. And as the discussion is going, different hospitals> > have different criteria for lung transplantations.

Just becauseyou've> > been turned down at one doesn't mean another hospital will acceptyou.> > A good website to check out is www.unos.org. The website has a lotof> > valuable information on lung transplantation. Another one of our> > Board members had a transplant last year @ age 71 at the Universityof> > land. He is also doing very very well. Keep the faith. Don'tgive> > up.> >> > Leanne> >>

[Guest guest]

Thanks MB...you clarified it nicely.

I never thought of my rheumadude in the way you describe. Well then, never needed too either!

Thanks.

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

Re: Tom Terrill / lung transplants

SherThe doctor at the University of Chicago felt I probably had anunderlying connective tissue disease such as Undifferentiated ConnectiveTissue Disease or Polymyositis. Earlier doctors had not felt so. So, Iwent to a rheumatologist. I have many indications of a connective tissuedisease but so far he doesn't feel it warrants him making such adiagnosis. Neither does the second opinion rheumatologist he referred meto. So, so far, no connective tissue disease diagnosed but who knows ifone will surface at some point.> >> > Hi,> > I just had to pipe in about Tom Terrill as he is on our Board of> > Directors and is a friend of mine. He's doing pheonomenally well> > after transplant. He came out to our support group and gave the> > members hope. And as the discussion is going, different hospitals> > have different criteria for lung transplantations. Just becauseyou've> > been turned down at one doesn't mean another hospital will acceptyou.> > A good website to check out is www.unos.org. The website has a lotof> > valuable information on lung transplantation. Another one of our> > Board members had a transplant last year @ age 71 at the Universityof> > land. He is also doing very very well. Keep the faith. Don'tgive> > up.> >> > Leanne> >>