Re: Tom Terrill / lung transplants

[Guest guest]

Leanne

Yes, Unos is where I got my information and it definitely shows the

practices of the various centers. Just a reminder to everyone to not

accept 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 very

little about PF and transplants and related subjects. There are some

great pulmonologists out there and great medical centers but they are in

the minority and you have to search. Second opinions are essential. Even

third. Any doctor who has a problem with you getting a second opinion

should be changed. My pulmonologist encouraged my visit to a Center of

Excellence. My rheumatologist is almost obsessive but he picked the best

rheumatologist he knew and referred me for a second opinion to his and

he referred me to a second neurologist who is knowledgeable about

connective tissue diseases and to my oncologist over other readings.

Now, thats a lot of doctors, but it's sure better than one who believes

he 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 in

communication.

Everyone is a transplant candidate until told no by one or perhaps more

centers. Now, you will know if their refusal makes sense or not.

Leanne.....do you know anyone who has had a lung and heart transplant? I

know 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]

Sher

The doctor at the University of Chicago felt I probably had an

underlying connective tissue disease such as Undifferentiated Connective

Tissue Disease or Polymyositis. Earlier doctors had not felt so. So, I

went to a rheumatologist. I have many indications of a connective tissue

disease but so far he doesn't feel it warrants him making such a

diagnosis. Neither does the second opinion rheumatologist he referred me

to. So, so far, no connective tissue disease diagnosed but who knows if

one 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 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]

Leanne

Glad to hear the two transplant recipients that you know are doing well.

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: Tom Terrill / lung transplantsTo: Breathe-Support Date: Friday, December 12, 2008, 1:19 PM

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]

Sher

The others aren't experts in the field. Many times Pulmonologists do

first determine you might have a connective tissue disease but then

refer 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 the

University

> of

> > > land. He is also doing very very well. Keep the faith. Don't

> give

> > > up.

> > >

> > > Leanne

> > >

> >

>

[Guest guest]

Sher

Deserting us at 4:20 in the afternoon?.....we'll miss you until

tomorrow...bye

> > > >

> > > > 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

> > > >

> > >

> >

>