New poll for Breathe-Support

[Guest guest]

Enter your vote today! A new poll has been created for the

Breathe-Support group:

What were you told by your pulmonologists to help you live with your disease?

Select as many of the following as are true. You may select multiple answers.

o I was told about this or another online support group by my doctor.

o I was told about PFF or CPF by my doctor.

o I was told places to go online for additional information by my doctor.

o I was given literature about the disease by my doctor.

o I was told about a local PF support group by my doctor (not general Lung) by

my doctor.

o I was given information about how to live with PF by my doctor.

To vote, please visit the following web page:

http://groups.yahoo.com/group/Breathe-Support/surveys?id=1979905

Note: Please do not reply to this message. Poll votes are

not collected via email. To vote, you must go to the Yahoo! Groups

web site listed above.

Thanks!

[Guest guest]

there's some answers that are missing.

If you were told absolutely nothing from your Pulmonologist

If you were left on your own to research and find all info you can on PF

What if you had to diagnose & self treat symptoms

---- Original Message ----

From: Breathe-Support

To: Breathe-Support

Sent: Sun, 13 Jan 2008 12:47 am

Subject: New poll for Breathe-Support

Enter your vote today! A new poll has been created for the

Breathe-Support group:

What were you told by your pulmonologists to help you live with your disease?

Select as many of the following as are true. You may select multiple answers.

o I was told about this or another online support group by my doctor.

o I was told about PFF or CPF by my doctor.

o I was told places to go online for additional information by my doctor.

o I was given literature about the disease by my doctor.

o I was told about a local PF support group by my doctor (not general Lung) by my doctor.

o I was given information about how to live with PF by my doctor.

To vote, please visit the following web page:

http://groups.yahoo.com/group/Breathe-Support/surveys?id=1979905

Note: Please do not reply to this message. Poll votes are

not collected via email. To vote, you must go to the Yahoo! Groups

web site listed above.

Thanks!

Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective.

[Guest guest]

You just check nothing and vote but I'm adding " nothing "

>

> there's?some answers that are missing.

>

> If you were told absolutely nothing from your Pulmonologist

> If you were left on your own to research and find all info you can

on PF

> What if you had to diagnose & ?self treat symptoms

>

> ---- Original Message ----

> From: Breathe-Support

> To: Breathe-Support

> Sent: Sun, 13 Jan 2008 12:47 am

> Subject: New poll for Breathe-Support

>

>

>

>

>

>

>

> Enter your vote today! A new poll has been created for the

> Breathe-Support group:

>

> What were you told by your pulmonologists to help you live with

your disease?

>

> Select as many of the following as are true. You may select

multiple answers.

>

> o I was told about this or another online support group by my

doctor.

> o I was told about PFF or CPF by my doctor.

> o I was told places to go online for additional information by my

doctor.

> o I was given literature about the disease by my doctor.

> o I was told about a local PF support group by my doctor (not

general Lung) by my doctor.

> o I was given information about how to live with PF by my doctor.

>

> To vote, please visit the following web page:

> http://groups.yahoo.com/group/Breathe-Support/surveys?id=1979905

>

> Note: Please do not reply to this message. Poll votes are

> not collected via email. To vote, you must go to the Yahoo! Groups

> web site listed above.

>

> Thanks!

>

>

>

>

>

>

______________________________________________________________________

__

> Meet the new AOL.ca. Free radio, music, videos, news &

entertainment ? with a Canadian perspective.

>

[Guest guest]

I took the poll . Wish there had been yes/no options.

None of the posted questions could be answered yes by me...

Now HERE is a real opportunity! Get brochures from Leanne and plaster hospitals and Dr. offices with them. Leave them 'wherever'! Word will get out.

Speaking of which, Leanne, I need more brochures....thanks

Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there!

New poll for Breathe-Support

Enter your vote today! A new poll has been created for the Breathe-Support group:What were you told by your pulmonologists to help you live with your disease?Select as many of the following as are true. You may select multiple answers. o I was told about this or another online support group by my doctor. o I was told about PFF or CPF by my doctor. o I was told places to go online for additional information by my doctor. o I was given literature about the disease by my doctor. o I was told about a local PF support group by my doctor (not general Lung) by my doctor. o I was given information about how to live with PF by my doctor. To vote, please visit the following web page:http://groups.yahoo.com/group/Breathe-Support/surveys?id=1979905 Note: Please do not reply to this message. Poll votes are not collected via email. To vote, you must go to the Yahoo! Groups web site listed above.Thanks!

[Guest guest]

Bruce, When I first became ill my primary

sent me to a pulmonologist at the local very good hospital.

He is the one who initially did all the blood work, PFT's and HRCT and

6 minute walk. After many weeks of bloodwork etc, he recommended

the VATS ( which turned into the OLB) and gave me information about the

procedure and sent me to a surgeon for a consultation. He never really

said PF.

After taking to the surgeon and reading on the web...I decided to have

the VATS. I woke to find that complications with intubation led to the

OLB.

The pulmonologist came into my hospital room and

after a brief exam said" I think you should go to University of

Pennsylvania Lung Center,

they do experimental work there" That's what he said, no DX, no

treatment options except for O2. So there I was assuming that I was

dying because he couldn't do anything for me. His office got me the

appointment in 4 days and I've never been back to him again! The Doc

I have now at Penn needs to be better about his people skills but he's

improving!

Z fibriotic NSIP/05

Z

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

Potter,

reader,carousel lover and MomMom to

Darah

“I’m gonna

be iron like a lion in Zion” Bob Marley

Bruce Moreland wrote:

So far I would say the poll results are a rather strong

condemnation.

The doctors "just don't get it." Treat the human, not the disease.

Take the oath you took seriously...all of it.

I hope everyone participates as this poll is one that I would love to

see everyone's response. I may even write down the results and carry

them with me to some pulmonologists or at least to my primary for him

to share with some colleagues.

Let's see.....you've got a terminal disease. I might give you some

drugs. You might get a transplant. Ok, I've done my job of diagnosis.

Next.

Some think their job ended with diagnosis. Do they realize they are

treating us like our life ended there too? Well, mine didn't. It's

full and vital thanks to me finding a place to get help. Here and my

counselor.

>

> I took the poll . Wish there had been yes/no options.

> None of the posted questions could be answered yes by me...

> Now HERE is a real opportunity! Get brochures from Leanne and

plaster hospitals and Dr. offices with them. Leave them 'wherever'!

Word will get out.

>

> Speaking of which, Leanne, I need more brochures....thanks

> Mama-Sher, 69; IPF, 3-06, OR.

> Don't fret about tomorrow, God is already there!

> New poll for Breathe-Support

>

>

>

> Enter your vote today! A new poll has been created for the

> Breathe-Support group:

>

> What were you told by your pulmonologists to help you live with

your disease?

>

> Select as many of the following as are true. You may select

multiple answers.

>

> o I was told about this or another online support group by my

doctor.

> o I was told about PFF or CPF by my doctor.

> o I was told places to go online for additional information by my

doctor.

> o I was given literature about the disease by my doctor.

> o I was told about a local PF support group by my doctor (not

general Lung) by my doctor.

> o I was given information about how to live with PF by my doctor.

>

> To vote, please visit the following web page:

> http://groups.yahoo.com/group/Breathe-Support/surveys?id=1979905

>

> Note: Please do not reply to this message. Poll votes are

> not collected via email. To vote, you must go to the Yahoo!

Groups

> web site listed above.

>

> Thanks!

>

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