Re: New Requirement Proposed for Certification in Pulmonology

[Guest guest]

Great idea in theory Bruce but how would we get around the fact that at the moment we are quite free to mention Medicos/Hospitals. Research Centres etc by NAME.....if those same Medicos were LURKING on here we'd HAVE to edit our posts!

in Oz

IPF: Fibrotic NSIP/UIP???????

Reynauds'

May 2007

I find it > interesting to get a picture of our group and various > > issues we've faced. The polls or surveys show as we all know that > > there are no right answers and no absolutes or consistencies.> > > > Sleep Apnea> > > > Leanne ran a poll asking if we'd been tested for sleep apnea. 52% > > said yes and 48% no. Right down the middle. Does that mean the > other > > 48% have no problems or just they haven't been tested. Of those > > tested, how many are on CPAPS or just taking oxygen for sleep.> > > > Advil> > > > There was a poll as to what percent had used Advil for coughing or > > shortness of breath. The results were odd as all four who said they > > had tried it said it had been successful in helping. No one said > they > > had tried it unsuccessfully. The vast majority (15) hadn't tried it > > for those symptoms.> > > > Coke/Pepsi> > > > Ok, we knew going in this wouldn't be close....lol> > > > Prednisone> > > > 37% said they were on it and had seen a benefit. 11% on it with no > > benefit. 28% have come off it or were coming off at the time. 20% > > chose to not try it. Very mixed as we would have expected. I think > it > > shows why people need to learn and make their own decisions as it > > clearly shows whats right for one isn't for others. Still with all > > the negatives (and I'm among the haven't and won't group), 37% are > on > > it and feel its benefitting them.> > > > Diagnosis> > > > 52% here feel totally confident in their diagnosis as to > specifically > > which form of ILD they have. 31% have some confidence but not so > > sure. 17% are completely in the land of confusion and frustration. > > Tell me any other disease in which only half would feel confident > of > > their diagnosis. And this doesn't even account for what the > confident > > 52% had to go through to get there. Most diseases, you have a > simple > > test or two and have your answer. Here's the disease, here's the > > treatment. Come back in a year. A good percentage of those of us > > totally confident had to go through a very invasive surgery. > > > > When its easier to get a concensus on Coke versus Pepsi than > anything > > related to our disease, that tells you something. It just shows > that > > for everything we know about this disease there are hundreds of > > things we don't know. All the more reason we need each other. > > > > > > > > > > > > > > ---------------------------------> > Looking for last minute shopping deals? Find them fast with Yahoo! > Search.> >>

[Guest guest]

, I am pretty sure you can relax about Dr's ect. joining  us because this board is just for we who suffer from lung diseases. This is OUR support group and we are safe to vent or discus whatever without scrutiny.  That is my understanding anyhooo. Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Great idea in theory Bruce but how would we get around the fact that at the moment we are quite free to mention Medicos/Hospitals. Research Centres etc by NAME.....if those same Medicos were LURKING on here we'd HAVE to edit our posts! in OzIPF: Fibrotic NSIP/UIP???????Reynauds'May 2007 I find it > interesting to get a picture of our group and various > > issues we've faced. The polls or surveys show as we all know that > > there are no right answers and no absolutes or consistencies.> > > > Sleep Apnea> > > > Leanne ran a poll asking if we'd been tested for sleep apnea. 52% > > said yes and 48% no. Right down the middle. Does that mean the > other > > 48% have no problems or just they haven't been tested. Of those > > tested, how many are on CPAPS or just taking oxygen for sleep.> > > > Advil> > > > There was a poll as to what percent had used Advil for coughing or > > shortness of breath. The results were odd as all four who said they > > had tried it said it had been successful in helping. No one said > they > > had tried it unsuccessfully. The vast majority (15) hadn't tried it > > for those symptoms.> > > > Coke/Pepsi> > > > Ok, we knew going in this wouldn't be close....lol> > > > Prednisone> > > > 37% said they were on it and had seen a benefit. 11% on it with no > > benefit. 28% have come off it or were coming off at the time. 20% > > chose to not try it. Very mixed as we would have expected. I think > it > > shows why people need to learn and make their own decisions as it > > clearly shows whats right for one isn't for others. Still with all > > the negatives (and I'm among the haven't and won't group), 37% are > on > > it and feel its benefitting them.> > > > Diagnosis> > > > 52% here feel totally confident in their diagnosis as to > specifically > > which form of ILD they have. 31% have some confidence but not so > > sure. 17% are completely in the land of confusion and frustration. > > Tell me any other disease in which only half would feel confident > of > > their diagnosis. And this doesn't even account for what the > confident > > 52% had to go through to get there. Most diseases, you have a > simple > > test or two and have your answer. Here's the disease, here's the > > treatment. Come back in a year. A good percentage of those of us > > totally confident had to go through a very invasive surgery. > > > > When its easier to get a concensus on Coke versus Pepsi than > anything > > related to our disease, that tells you something. It just shows > that > > for everything we know about this disease there are hundreds of > > things we don't know. All the more reason we need each other. > > > > > > > > > > > > > > ---------------------------------> > Looking for last minute shopping deals? Find them fast with Yahoo! > Search.> >>

[Guest guest]

Peggy,

I posted this reply because there HAS been a serious suggestion that Medicos might benefit from being allowed to join the Board to help in their understanding of this disease & our experiences in dealing with it.

While I acknowledge that it COULD be of benefit to them & therefore to their patients I can also see the difficulty for the Board in staying the same 'free-to-vent' place that it currently is!

For that reason I would be against allowing Medicos to visit the Board for training purposes!

That's just my 2 cents worth....

in Oz

I find it> > interesting to get a picture of our group and various> > > issues we've faced. The polls or surveys show as we all know that> > > there are no right answers and no absolutes or consistencies.> > >> > > Sleep Apnea> > >> > > Leanne ran a poll asking if we'd been tested for sleep apnea. 52%> > > said yes and 48% no. Right down the middle. Does that mean the> > other> > > 48% have no problems or just they haven't been tested. Of those> > > tested, how many are on CPAPS or just taking oxygen for sleep.> > >> > > Advil> > >> > > There was a poll as to what percent had used Advil for coughing or> > > shortness of breath. The results were odd as all four who said they> > > had tried it said it had been successful in helping. No one said> > they> > > had tried it unsuccessfully. The vast majority (15) hadn't tried it> > > for those symptoms.> > >> > > Coke/Pepsi> > >> > > Ok, we knew going in this wouldn't be close....lol> > >> > > Prednisone> > >> > > 37% said they were on it and had seen a benefit. 11% on it with no> > > benefit. 28% have come off it or were coming off at the time. 20%> > > chose to not try it. Very mixed as we would have expected. I think> > it> > > shows why people need to learn and make their own decisions as it> > > clearly shows whats right for one isn't for others. Still with all> > > the negatives (and I'm among the haven't and won't group), 37% are> > on> > > it and feel its benefitting them.> > >> > > Diagnosis> > >> > > 52% here feel totally confident in their diagnosis as to> > specifically> > > which form of ILD they have. 31% have some confidence but not so> > > sure. 17% are completely in the land of confusion and frustration.> > > Tell me any other disease in which only half would feel confident> > of> > > their diagnosis. And this doesn't even account for what the> > confident> > > 52% had to go through to get there. Most diseases, you have a> > simple> > > test or two and have your answer. Here's the disease, here's the> > > treatment. Come back in a year. A good percentage of those of us> > > totally confident had to go through a very invasive surgery.> > >> > > When its easier to get a concensus on Coke versus Pepsi than> > anything> > > related to our disease, that tells you something. It just shows> > that> > > for everything we know about this disease there are hundreds of> > > things we don't know. All the more reason we need each other.> > >> > >> > >> > >> > >> > >> > > ---------------------------------> > > Looking for last minute shopping deals? Find them fast with Yahoo!> > Search.> > >> >>

[Guest guest]

I agree. Joyce D and Leanne are the ones that admit or not and I am pretty sure they only allow patients. I think Bruce had that bright idea--- BAD idea Bruce..LOL We need to and like to talk behind their backs. LOLOh I am feeling ornery tonight.  Love and Prayers, Peggy  ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Peggy,           I posted this reply because there HAS been a serious suggestion that Medicos might benefit from being allowed to join the Board to help in their understanding of this disease & our experiences in dealing with it.         While I acknowledge that it COULD  be of benefit to them & therefore to their patients I can also see the difficulty for the Board in staying the same 'free-to-vent' place that it currently is!          For that reason I would be against allowing Medicos to visit the Board for training purposes!         That's just my 2 cents worth....         in Oz I find it> > interesting to get a picture of our group and various> > > issues we've faced. The polls or surveys show as we all know that> > > there are no right answers and no absolutes or consistencies.> > >> > > Sleep Apnea> > >> > > Leanne ran a poll asking if we'd been tested for sleep apnea. 52%> > > said yes and 48% no. Right down the middle. Does that mean the> > other> > > 48% have no problems or just they haven't been tested. Of those> > > tested, how many are on CPAPS or just taking oxygen for sleep.> > >> > > Advil> > >> > > There was a poll as to what percent had used Advil for coughing or> > > shortness of breath. The results were odd as all four who said they> > > had tried it said it had been successful in helping. No one said> > they> > > had tried it unsuccessfully. The vast majority (15) hadn't tried it> > > for those symptoms.> > >> > > Coke/Pepsi> > >> > > Ok, we knew going in this wouldn't be close....lol> > >> > > Prednisone> > >> > > 37% said they were on it and had seen a benefit. 11% on it with no> > > benefit. 28% have come off it or were coming off at the time. 20%> > > chose to not try it. Very mixed as we would have expected. I think> > it> > > shows why people need to learn and make their own decisions as it> > > clearly shows whats right for one isn't for others. Still with all> > > the negatives (and I'm among the haven't and won't group), 37% are> > on> > > it and feel its benefitting them.> > >> > > Diagnosis> > >> > > 52% here feel totally confident in their diagnosis as to> > specifically> > > which form of ILD they have. 31% have some confidence but not so> > > sure. 17% are completely in the land of confusion and frustration.> > > Tell me any other disease in which only half would feel confident> > of> > > their diagnosis. And this doesn't even account for what the> > confident> > > 52% had to go through to get there. Most diseases, you have a> > simple> > > test or two and have your answer. Here's the disease, here's the> > > treatment. Come back in a year. A good percentage of those of us> > > totally confident had to go through a very invasive surgery.> > >> > > When its easier to get a concensus on Coke versus Pepsi than> > anything> > > related to our disease, that tells you something. It just shows> > that> > > for everything we know about this disease there are hundreds of> > > things we don't know. All the more reason we need each other.> > >> > >> > >> > >> > >> > >> > > ---------------------------------> > > Looking for last minute shopping deals? Find them fast with Yahoo!> > Search.> > >> >>

[Guest guest]

, I don't think that Docs should be

members of this group...however occasionally I send a post to my

pulmonologist that

has information or a link to a publshed article that I think he might

find interesting. If you think that isn't a good idea,

I'll refrain from even doing that. This group is too vital and needs

to remain as a safe place for all of us.

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

wrote:

Peggy,

I posted this reply because there

HAS been a serious suggestion that Medicos might benefit from being

allowed to join the Board to help in their understanding of this

disease & our experiences in dealing with it.

While I acknowledge that it COULD

be of benefit to them & therefore to their patients I can also see

the difficulty for the Board in staying the same 'free-to-vent' place

that it currently is!

For that reason I would be against

allowing Medicos to visit the Board for training purposes!

That's just my 2

cents worth....

in Oz

I find it

> > interesting to get a picture of our group and various

> > > issues we've faced. The polls or surveys show as we all

know that

> > > there are no right answers and no absolutes or

consisencies.

> > >

> > > Sleep Apnea

> > >

> > > Leanne ran a poll asking if we'd been tested for sleep

apnea. 52%

> > > said yes and 48% no. Right down the middle. Does that

mean the

> > other

> > > 48% have no problems or just they haven't been tested.

Of those

> > > tested, how many are on CPAPS or just taking oxygen for

sleep.

> > >

> > > Advil

> > >

> > > There was a poll as to what percent had used Advil for

coughing or

> > > shortness of breath. The results were odd as all four

who said they

> > > had tried it said it had been successful in helping. No

one said

> > they

> > > had tried it unsuccessfully. The vast majority (15)

hadn't tried it

> > > for those symptoms.

> > >

> > > Coke/Pepsi

> > >

> > > Ok, we knew going in this wouldn't be close....lol

> > >

> > > Prednisone

> > >

> > > 37% said they were on it and had seen a benefit. 11% on

it with no

> > > benefit. 28% have come off it or were coming off at the

time. 20%

> > > chose to not try it. Very mixed as we would have

expected. I think

> > it

> > > shows why people need to learn and make their own

decisions as it

> > > clearly shows whats right for one isn't for others.

Still with all

> > > the negatives (and I'm among the haven't and won't

group), 37% are

> > on

> > > it and feel its benefitting them.

> > >

> > > Diagnosis

> > >

> > > 52% here feel totally confident in their diagnosis as to

> > specifically

> > > which form of ILD they have. 31% have some confidence

but not so

> > > sure. 17% are completely in the land of confusion and

frustration.

> > > Tell me any other disease n which only half would feel

confident

> > of

> > > their diagnosis. And this doesn't even account for what

the

> > confident

> > > 52% had to go through to get there. Most diseases, you

have a

> > simple

> > > test or two and have your answer. Here's the disease,

here's the

> > > treatment. Come back in a year. A good percentage of

those of us

> > > totally confident had to go through a very invasive

surgery.

> > >

> > > When its easier to get a concensus on Coke versus Pepsi

than

> > anything

> > > related to our disease, that tells you something. It

just shows

> > that

> > > for everything we know about this disease there are

hundreds of

> > > things we don't know. All the more reason we need each

other.

> > >

> > >

> > >

> > >

> > >

> > >

> > > ---------------------------------

> > > Looking for last minute shopping deals? Find them fast

with Yahoo!

> > Search.

> > >

> >

>

No virus found in this incoming message.

Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.1/1220 - Release Date: 1/11/2008 6:09 PM

[Guest guest]

There was never a suggestion they join although guess technically

they might have to in order to read but never any suggestion they

participate in any way. Also, the entire suggestion was knowing its

not going to happen. Actually, I have no authority to set the rules

for Certification in medical specialties. The statement was that they

would all benefit by reading some of what we go through, some of what

we need, what we encounter, where the medical profession lets us

down. That part of treating us is missing from their training. They

aren't fulfilling in many cases those paragraphs of their oath. I

don't want pulmonologists here as members by any means. But I would

love for those in school to read redacted (names removed) posts of

several days to just understand the patient they need to treat.

I find it

> > interesting to get a picture of our group and various

> > > issues we've faced. The polls or surveys show as we all know

that

> > > there are no right answers and no absolutes or consistencies.

> > >

> > > Sleep Apnea

> > >

> > > Leanne ran a poll asking if we'd been tested for sleep apnea.

52%

> > > said yes and 48% no. Right down the middle. Does that mean the

> > other

> > > 48% have no problems or just they haven't been tested. Of those

> > > tested, how many are on CPAPS or just taking oxygen for sleep.

> > >

> > > Advil

> > >

> > > There was a poll as to what percent had used Advil for

coughing or

> > > shortness of breath. The results were odd as all four who said

they

> > > had tried it said it had been successful in helping. No one

said

> > they

> > > had tried it unsuccessfully. The vast majority (15) hadn't

tried it

> > > for those symptoms.

> > >

> > > Coke/Pepsi

> > >

> > > Ok, we knew going in this wouldn't be close....lol

> > >

> > > Prednisone

> > >

> > > 37% said they were on it and had seen a benefit. 11% on it

with no

> > > benefit. 28% have come off it or were coming off at the time.

20%

> > > chose to not try it. Very mixed as we would have expected. I

think

> > it

> > > shows why people need to learn and make their own decisions as

it

> > > clearly shows whats right for one isn't for others. Still with

all

> > > the negatives (and I'm among the haven't and won't group), 37%

are

> > on

> > > it and feel its benefitting them.

> > >

> > > Diagnosis

> > >

> > > 52% here feel totally confident in their diagnosis as to

> > specifically

> > > which form of ILD they have. 31% have some confidence but not

so

> > > sure. 17% are completely in the land of confusion and

frustration.

> > > Tell me any other disease in which only half would feel

confident

> > of

> > > their diagnosis. And this doesn't even account for what the

> > confident

> > > 52% had to go through to get there. Most diseases, you have a

> > simple

> > > test or two and have your answer. Here's the disease, here's

the

> > > treatment. Come back in a year. A good percentage of those of

us

> > > totally confident had to go through a very invasive surgery.

> > >

> > > When its easier to get a concensus on Coke versus Pepsi than

> > anything

> > > related to our disease, that tells you something. It just shows

> > that

> > > for everything we know about this disease there are hundreds of

> > > things we don't know. All the more reason we need each other.

> > >

> > >

> > >

> > >

> > >

> > >

> > > ---------------------------------

> > > Looking for last minute shopping deals? Find them fast with

Yahoo!

> > Search.

> > >

> >

>

[Guest guest]

Well, not expecting them here...I can't make requirements for

certification. I'm saying that if somehow they were to see the posts

though, without the identification, although the hospitals criticized

deserve it, they might realize they are treating humans. No, I'm not

proposing inviting all our doctors to join the board. But I would

love to make a class in medical school have to read a few days of it

with the names removed. The point is that they could learn more about

treating the patient, the human, in three days of posts here than

many learn in their career.

It was venting.

It was also a statement that they overlook a very important part of

their oath. You know, in fact, that there are major movements by

doctors to get the hypocritic oath changed?

Besides the one's who need it would never take the time anyway.

I find it

> > interesting to get a picture of our group and various

> > > issues we've faced. The polls or surveys show as we all know

that

> > > there are no right answers and no absolutes or consistencies.

> > >

> > > Sleep Apnea

> > >

> > > Leanne ran a poll asking if we'd been tested for sleep apnea.

52%

> > > said yes and 48% no. Right down the middle. Does that mean the

> > other

> > > 48% have no problems or just they haven't been tested. Of those

> > > tested, how many are on CPAPS or just taking oxygen for sleep.

> > >

> > > Advil

> > >

> > > There was a poll as to what percent had used Advil for coughing

or

> > > shortness of breath. The results were odd as all four who said

they

> > > had tried it said it had been successful in helping. No one said

> > they

> > > had tried it unsuccessfully. The vast majority (15) hadn't

tried it

> > > for those symptoms.

> > >

> > > Coke/Pepsi

> > >

> > > Ok, we knew going in this wouldn't be close....lol

> > >

> > > Prednisone

> > >

> > > 37% said they were on it and had seen a benefit. 11% on it with

no

> > > benefit. 28% have come off it or were coming off at the time.

20%

> > > chose to not try it. Very mixed as we would have expected. I

think

> > it

> > > shows why people need to learn and make their own decisions as

it

> > > clearly shows whats right for one isn't for others. Still with

all

> > > the negatives (and I'm among the haven't and won't group), 37%

are

> > on

> > > it and feel its benefitting them.

> > >

> > > Diagnosis

> > >

> > > 52% here feel totally confident in their diagnosis as to

> > specifically

> > > which form of ILD they have. 31% have some confidence but not so

> > > sure. 17% are completely in the land of confusion and

frustration.

> > > Tell me any other disease in which only half would feel

confident

> > of

> > > their diagnosis. And this doesn't even account for what the

> > confident

> > > 52% had to go through to get there. Most diseases, you have a

> > simple

> > > test or two and have your answer. Here's the disease, here's the

> > > treatment. Come back in a year. A good percentage of those of us

> > > totally confident had to go through a very invasive surgery.

> > >

> > > When its easier to get a concensus on Coke versus Pepsi than

> > anything

> > > related to our disease, that tells you something. It just shows

> > that

> > > for everything we know about this disease there are hundreds of

> > > things we don't know. All the more reason we need each other.

> > >

> > >

> > >

> > >

> > >

> > >

> > > ---------------------------------

> > > Looking for last minute shopping deals? Find them fast with

Yahoo!

> > Search.

> > >

> >

>

[Guest guest]

Sorry....suggestion not serious. You really think I can set the

requirements for certification in pulmonary medicine?

I find it

> > > interesting to get a picture of our group and various

> > > > issues we've faced. The polls or surveys show as we all know

that

> > > > there are no right answers and no absolutes or consistencies.

> > > >

> > > > Sleep Apnea

> > > >

> > > > Leanne ran a poll asking if we'd been tested for sleep apnea.

52%

> > > > said yes and 48% no. Right down the middle. Does that mean the

> > > other

> > > > 48% have no problems or just they haven't been tested. Of

those

> > > > tested, how many are on CPAPS or just taking oxygen for sleep.

> > > >

> > > > Advil

> > > >

> > > > There was a poll as to what percent had used Advil for

coughing or

> > > > shortness of breath. The results were odd as all four who said

> they

> > > > had tried it said it had been successful in helping. No one

said

> > > they

> > > > had tried it unsuccessfully. The vast majority (15) hadn't

tried

> it

> > > > for those symptoms.

> > > >

> > > > Coke/Pepsi

> > > >

> > > > Ok, we knew going in this wouldn't be close....lol

> > > >

> > > > Prednisone

> > > >

> > > > 37% said they were on it and had seen a benefit. 11% on it

with no

> > > > benefit. 28% have come off it or were coming off at the time.

20%

> > > > chose to not try it. Very mixed as we would have expected. I

think

> > > it

> > > > shows why people need to learn and make their own decisions

as it

> > > > clearly shows whats right for one isn't for others. Still

with all

> > > > the negatives (and I'm among the haven't and won't group),

37% are

> > > on

> > > > it and feel its benefitting them.

> > > >

> > > > Diagnosis

> > > >

> > > > 52% here feel totally confident in their diagnosis as to

> > > specifically

> > > > which form of ILD they have. 31% have some confidence but not

so

> > > > sure. 17% are completely in the land of confusion and

frustration.

> > > > Tell me any other disease in which only half would feel

confident

> > > of

> > > > their diagnosis. And this doesn't even account for what the

> > > confident

> > > > 52% had to go through to get there. Most diseases, you have a

> > > simple

> > > > test or two and have your answer. Here's the disease, here's

the

> > > > treatment. Come back in a year. A good percentage of those of

us

> > > > totally confident had to go through a very invasive surgery.

> > > >

> > > > When its easier to get a concensus on Coke versus Pepsi than

> > > anything

> > > > related to our disease, that tells you something. It just

shows

> > > that

> > > > for everything we know about this disease there are hundreds

of

> > > > things we don't know. All the more reason we need each other.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > ---------------------------------

> > > > Looking for last minute shopping deals? Find them fast with

Yahoo!

> > > Search.

> > > >

> > >

> >

>

[Guest guest]

Wake up people. I have no input into proposing any requirement for

certification in medical specialties. Venting point was the doctors

are missing a huge part of their education and their oath to

practice. Now, would they benefit by reading a few days of posts,

with names removed, obviously. But do I want them as members? No. And

do I have the authority to make the requirements for their

certification? Oh, come on now.

I find it

> > > interesting to get a picture of our group and various

> > > > issues we've faced. The polls or surveys show as we all know

that

> > > > there are no right answers and no absolutes or consistencies.

> > > >

> > > > Sleep Apnea

> > > >

> > > > Leanne ran a poll asking if we'd been tested for sleep

apnea. 52%

> > > > said yes and 48% no. Right down the middle. Does that mean

the

> > > other

> > > > 48% have no problems or just they haven't been tested. Of

those

> > > > tested, how many are on CPAPS or just taking oxygen for

sleep.

> > > >

> > > > Advil

> > > >

> > > > There was a poll as to what percent had used Advil for

> coughing or

> > > > shortness of breath. The results were odd as all four who

said

> they

> > > > had tried it said it had been successful in helping. No one

said

> > > they

> > > > had tried it unsuccessfully. The vast majority (15) hadn't

> tried it

> > > > for those symptoms.

> > > >

> > > > Coke/Pepsi

> > > >

> > > > Ok, we knew going in this wouldn't be close....lol

> > > >

> > > > Prednisone

> > > >

> > > > 37% said they were on it and had seen a benefit. 11% on it

> with no

> > > > benefit. 28% have come off it or were coming off at the

time. 20%

> > > > chose to not try it. Very mixed as we would have expected.

I

> think

> > > it

> > > > shows why people need to learn and make their own decisions

as it

> > > > clearly shows whats right for one isn't for others. Still

with

> all

> > > > the negatives (and I'm among the haven't and won't group),

37%

> are

> > > on

> > > > it and feel its benefitting them.

> > > >

> > > > Diagnosis

> > > >

> > > > 52% here feel totally confident in their diagnosis as to

> > > specifically

> > > > which form of ILD they have. 31% have some confidence but

not so

> > > > sure. 17% are completely in the land of confusion and

> frustration.

> > > > Tell me any other disease in which only half would feel

confident

> > > of

> > > > their diagnosis. And this doesn't even account for what the

> > > confident

> > > > 52% had to go through to get there. Most diseases, you have a

> > > simple

> > > > test or two and have your answer. Here's the disease, here's

the

> > > > treatment. Come back in a year. A good percentage of those

of us

> > > > totally confident had to go through a very invasive surgery.

> > > >

> > > > When its easier to get a concensus on Coke versus Pepsi than

> > > anything

> > > > related to our disease, that tells you something. It just

shows

> > > that

> > > > for everything we know about this disease there are hundreds

of

> > > > things we don't know. All the more reason we need each other.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > ---------------------------------

> > > > Looking for last minute shopping deals? Find them fast with

> Yahoo!

> > > Search.

> > > >

> > >

> >

>

[Guest guest]

I think its fine to send them information, not for them to become

active members and under no illusion any would if they could.

Now, they do all need to be taught their responsibilities to treat

the patient, not just the disease and reminded of their oath to

practice.

Medical schools in this area recently have talked about increasing

courses on " bedside manner " as they state 40% of medicine is

listening to the patient. Do your doctors give 40% of their time to

doing so?

Again, guess I need a translator like does, but I would have

hoped the very fact I was even suggesting that I had the ability to

influence the requirements for certification would have said it

wasn't a plan I intended as real.

It was simply pointing out the parts of their education and practice

that are missing. That they aren't learning our needs as they are

clearly expressed every day here.

Sorry to get people stirred up somehow thinking I was going to

require all doctors to join, participate, and change the board. Oh,

if I had that power, I'd use it to teach them a few other

things....lol

I find it

> > > > interesting to get a picture of our group and various

> > > > > issues we've faced. The polls or surveys show as we all

know that

> > > > > there are no right answers and no absolutes or consisencies.

> > > > >

> > > > > Sleep Apnea

> > > > >

> > > > > Leanne ran a poll asking if we'd been tested for sleep

apnea. 52%

> > > > > said yes and 48% no. Right down the middle. Does that mean

the

> > > > other

> > > > > 48% have no problems or just they haven't been tested. Of

those

> > > > > tested, how many are on CPAPS or just taking oxygen for

sleep.

> > > > >

> > > > > Advil

> > > > >

> > > > > There was a poll as to what percent had used Advil for

coughing or

> > > > > shortness of breath. The results were odd as all four who

said they

> > > > > had tried it said it had been successful in helping. No one

said

> > > > they

> > > > > had tried it unsuccessfully. The vast majority (15) hadn't

tried it

> > > > > for those symptoms.

> > > > >

> > > > > Coke/Pepsi

> > > > >

> > > > > Ok, we knew going in this wouldn't be close....lol

> > > > >

> > > > > Prednisone

> > > > >

> > > > > 37% said they were on it and had seen a benefit. 11% on it

with no

> > > > > benefit. 28% have come off it or were coming off at the

time. 20%

> > > > > chose to not try it. Very mixed as we would have expected.

I think

> > > > it

> > > > > shows why people need to learn and make their own decisions

as it

> > > > > clearly shows whats right for one isn't for others. Still

with all

> > > > > the negatives (and I'm among the haven't and won't group),

37% are

> > > > on

> > > > > it and feel its benefitting them.

> > > > >

> > > > > Diagnosis

> > > > >

> > > > > 52% here feel totally confident in their diagnosis as to

> > > > specifically

> > > > > which form of ILD they have. 31% have some confidence but

not so

> > > > > sure. 17% are completely in the land of confusion and

frustration.

> > > > > Tell me any other disease n which only half would feel

confident

> > > > of

> > > > > their diagnosis. And this doesn't even account for what the

> > > > confident

> > > > > 52% had to go through to get there. Most diseases, you have

a

> > > > simple

> > > > > test or two and have your answer. Here's the disease,

here's the

> > > > > treatment. Come back in a year. A good percentage of those

of us

> > > > > totally confident had to go through a very invasive surgery.

> > > > >

> > > > > When its easier to get a concensus on Coke versus Pepsi than

> > > > anything

> > > > > related to our disease, that tells you something. It just

shows

> > > > that

> > > > > for everything we know about this disease there are

hundreds of

> > > > > things we don't know. All the more reason we need each

other.

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > ---------------------------------

> > > > > Looking for last minute shopping deals? Find them fast with

Yahoo!

> > > > Search.

> > > > >

> > > >

> > >

> > *

> >

> > * *

> > * *

> >

> >*

> >*

> >-------------------------------------------------------------------

-----

> >*

> >No virus found in this incoming message.

> >Checked by AVG Free Edition.

> >Version: 7.5.516 / Virus Database: 269.19.1/1220 - Release Date:

1/11/2008 6:09 PM

> >*

> >

>

[Guest guest]

Dear ,

I can see the value in merely forwarding a particular post (But perhaps with the Postees permission!) ...... what does everyone else think ????

Really when all is said & done, I guess Leanne & Joyce D are dependant on those asking to join the group are telling the full story about who they are. There's always the chance that a really keen, determined Medico could POSE as a patient to gain access!

NOW I'm being paranoid & I'm not even taking the dreaded Prednisone!!!!

in Oz I find it> > > > interesting to get a picture of our group and various> > > > > issues we've faced. The polls or surveys show as we all know that> > > > > there are no right answers and no absolutes or consisencies.> > > > >> > > > > Sleep Apnea> > > > >> > > > > Leanne ran a poll asking if we'd been tested for sleep apnea. 52%> > > > > said yes and 48% no. Right down the middle. Does that mean the> > > > other> > > > > 48% have no problems or just they haven't been tested. Of those> > > > > tested, how many are on CPAPS or just taking oxygen for sleep.> > > > >> > > > > Advil> > > > >> > > > > There was a poll as to what percent had used Advil for coughing or> > > > > shortness of breath. The results were odd as all four who said they> > > > > had tried it said it had been successful in helping. No one said> > > > they> > > > > had tried it unsuccessfully. The vast majority (15) hadn't tried it> > > > > for those symptoms.> > > > >> > > > > Coke/Pepsi> > > > >> > > > > Ok, we knew going in this wouldn't be close....lol> > > > >> > > > > Prednisone> > > > >> > > > > 37% said they were on it and had seen a benefit. 11% on it with no> > > > > benefit. 28% have come off it or were coming off at the time. 20%> > > > > chose to not try it. Very mixed as we would have expected. I think> > > > it> > > > > shows why people need to learn and make their own decisions as it> > > > > clearly shows whats right for one isn't for others. Still with all> > > > > the negatives (and I'm among the haven't and won't group), 37% are> > > > on> > > > > it and feel its benefitting them.> > > > >> > > > > Diagnosis> > > > >> > > > > 52% here feel totally confident in their diagnosis as to> > > > specifically> > > > > which form of ILD they have. 31% have some confidence but not so> > > > > sure. 17% are completely in the land of confusion and frustration.> > > > > Tell me any other disease n which only half would feel confident> > > > of> > > > > their diagnosis. And this doesn't even account for what the> > > > confident> > > > > 52% had to go through to get there. Most diseases, you have a> > > > simple> > > > > test or two and have your answer. Here's the disease, here's the> > > > > treatment. Come back in a year. A good percentage of those of us> > > > > totally confident had to go through a very invasive surgery.> > > > >> > > > > When its easier to get a concensus on Coke versus Pepsi than> > > > anything> > > > > related to our disease, that tells you something. It just shows> > > > that> > > > > for everything we know about this disease there are hundreds of> > > > > things we don't know. All the more reason we need each other.> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > > ---------------------------------> > > > > Looking for last minute shopping deals? Find them fast with Yahoo!> > > > Search.> > > > >> > > >> > >> > *> >> > * *> > * *> >> >*> >*> >------------------------------------------------------------------------> >*> >No virus found in this incoming message.> >Checked by AVG Free Edition. > >Version: 7.5.516 / Virus Database: 269.19.1/1220 - Release Date: 1/11/2008 6:09 PM> >*> >>

[Guest guest]

Dear Bruce,

Yes, the problem with LURKING is that even that would give them ACCESS to the whole history of the Posts on the Board. There is no distinction in that for Active Board Members or the people who only READ Posts.

Hey, I'm don't want to cause a big Kerfuffle here...I'm just sounding a NOTE of CAUTION'....I had in fact mooted the same THOUGHT ages ago but instantly dismissed it because of the 'Editing' Problem!

Yours in the Spirit of frank & open discussion...

in Oz

I find it> > > interesting to get a picture of our group and various> > > > issues we've faced. The polls or surveys show as we all know > that> > > > there are no right answers and no absolutes or consistencies.> > > >> > > > Sleep Apnea> > > >> > > > Leanne ran a poll asking if we'd been tested for sleep apnea. > 52%> > > > said yes and 48% no. Right down the middle. Does that mean the> > > other> > > > 48% have no problems or just they haven't been tested. Of those> > > > tested, how many are on CPAPS or just taking oxygen for sleep.> > > >> > > > Advil> > > >> > > > There was a poll as to what percent had used Advil for > coughing or> > > > shortness of breath. The results were odd as all four who said > they> > > > had tried it said it had been successful in helping. No one > said> > > they> > > > had tried it unsuccessfully. The vast majority (15) hadn't > tried it> > > > for those symptoms.> > > >> > > > Coke/Pepsi> > > >> > > > Ok, we knew going in this wouldn't be close....lol> > > >> > > > Prednisone> > > >> > > > 37% said they were on it and had seen a benefit. 11% on it > with no> > > > benefit. 28% have come off it or were coming off at the time. > 20%> > > > chose to not try it. Very mixed as we would have expected. I > think> > > it> > > > shows why people need to learn and make their own decisions as > it> > > > clearly shows whats right for one isn't for others. Still with > all> > > > the negatives (and I'm among the haven't and won't group), 37% > are> > > on> > > > it and feel its benefitting them.> > > >> > > > Diagnosis> > > >> > > > 52% here feel totally confident in their diagnosis as to> > > specifically> > > > which form of ILD they have. 31% have some confidence but not > so> > > > sure. 17% are completely in the land of confusion and > frustration.> > > > Tell me any other disease in which only half would feel > confident> > > of> > > > their diagnosis. And this doesn't even account for what the> > > confident> > > > 52% had to go through to get there. Most diseases, you have a> > > simple> > > > test or two and have your answer. Here's the disease, here's > the> > > > treatment. Come back in a year. A good percentage of those of > us> > > > totally confident had to go through a very invasive surgery.> > > >> > > > When its easier to get a concensus on Coke versus Pepsi than> > > anything> > > > related to our disease, that tells you something. It just shows> > > that> > > > for everything we know about this disease there are hundreds of> > > > things we don't know. All the more reason we need each other.> > > >> > > >> > > >> > > >> > > >> > > >> > > > ---------------------------------> > > > Looking for last minute shopping deals? Find them fast with > Yahoo!> > > Search.> > > >> > >> >>

[Guest guest]

I think people are fully able to exercise good judgement of what to

forward and not to so no rules necessary. Rules wouldn't help those

with poor judgement anyway, but I don't think we have those so not

worried.

I find it

> > > > > interesting to get a picture of our group and various

> > > > > > issues we've faced. The polls or surveys show as we all

know

> that

> > > > > > there are no right answers and no absolutes or

consisencies.

> > > > > >

> > > > > > Sleep Apnea

> > > > > >

> > > > > > Leanne ran a poll asking if we'd been tested for sleep

apnea.

> 52%

> > > > > > said yes and 48% no. Right down the middle. Does that

mean the

> > > > > other

> > > > > > 48% have no problems or just they haven't been tested. Of

> those

> > > > > > tested, how many are on CPAPS or just taking oxygen for

sleep.

> > > > > >

> > > > > > Advil

> > > > > >

> > > > > > There was a poll as to what percent had used Advil for

> coughing or

> > > > > > shortness of breath. The results were odd as all four who

said

> they

> > > > > > had tried it said it had been successful in helping. No

one

> said

> > > > > they

> > > > > > had tried it unsuccessfully. The vast majority (15) hadn't

> tried it

> > > > > > for those symptoms.

> > > > > >

> > > > > > Coke/Pepsi

> > > > > >

> > > > > > Ok, we knew going in this wouldn't be close....lol

> > > > > >

> > > > > > Prednisone

> > > > > >

> > > > > > 37% said they were on it and had seen a benefit. 11% on it

> with no

> > > > > > benefit. 28% have come off it or were coming off at the

time.

> 20%

> > > > > > chose to not try it. Very mixed as we would have

expected. I

> think

> > > > > it

> > > > > > shows why people need to learn and make their own

decisions as

> it

> > > > > > clearly shows whats right for one isn't for others. Still

with

> all

> > > > > > the negatives (and I'm among the haven't and won't

group), 37%

> are

> > > > > on

> > > > > > it and feel its benefitting them.

> > > > > >

> > > > > > Diagnosis

> > > > > >

> > > > > > 52% here feel totally confident in their diagnosis as to

> > > > > specifically

> > > > > > which form of ILD they have. 31% have some confidence but

not

> so

> > > > > > sure. 17% are completely in the land of confusion and

> frustration.

> > > > > > Tell me any other disease n which only half would feel

> confident

> > > > > of

> > > > > > their diagnosis. And this doesn't even account for what

the

> > > > > confident

> > > > > > 52% had to go through to get there. Most diseases, you

have a

> > > > > simple

> > > > > > test or two and have your answer. Here's the disease,

here's

> the

> > > > > > treatment. Come back in a year. A good percentage of

those of

> us

> > > > > > totally confident had to go through a very invasive

surgery.

> > > > > >

> > > > > > When its easier to get a concensus on Coke versus Pepsi

than

> > > > > anything

> > > > > > related to our disease, that tells you something. It just

> shows

> > > > > that

> > > > > > for everything we know about this disease there are

hundreds

> of

> > > > > > things we don't know. All the more reason we need each

other.

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > > ---------------------------------

> > > > > > Looking for last minute shopping deals? Find them fast

with

> Yahoo!

> > > > > Search.

> > > > > >

> > > > >

> > > >

> > > *

> > >

> > > * *

> > > * *

> > >

> > >*

> > >*

> >

> >-------------------------------------------------------------------

----\

> -

> > >*

> > >No virus found in this incoming message.

> > >Checked by AVG Free Edition.

> > >Version: 7.5.516 / Virus Database: 269.19.1/1220 - Release Date:

> 1/11/2008 6:09 PM

> > >*

> > >

> >

>

[Guest guest]

Bruce, When I first met my pulmonologist

I was very impressed by his knowledge of my disease NSIP.

What I did not like was his lack of people skills. He was willing to

listen and answer my many

questions but I felt that " something" was missing. . I felt that he

was more aware of my lungs than of me. I have made it my goal to get

him to become aware that these sick lungs come with a person . He

spends most of his days at NIH in Washington, DC doing research on

NSIP and teaching at Penn. He only sees patients on Mondays but has

changed his schedule to see me when I have been troubled. He is

accessible by email..it's the face-to- face that he has trouble with

I keep mentioning family matters to him, show him pictures of my grand

daughter, I even brought him a piece of my pottery. He now smiles

more, calls me "" and has asked to be called "Horace" ( poor

guy..what a name!). I seem to be making progress!

I'm teaching him his own " bedside manner" course!

..

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:

I think its fine to send them information, not for them to become

active members and under no illusion any would if they could.

Now, they do all need to be taught their responsibilities to treat

the patient, not just the disease and reminded of their oath to

practice.

Medical schools in this area recently have talked about increasing

courses on "bedside manner" as they state 40% of medicine is

listening to the patient. Do your doctors give 40% of their time to

doing so?

Again, guess I need a translator like does, but I would have

hoped the very fact I was even suggesting that I had the ability to

influence the requirements for certification would have said it

wasn't a plan I intended as real.

It was simply pointing out the parts of their education and practice

that are missing. That they aren't learning our needs as they are

clearly expressed every day here.

Sorry to get people stirred up somehow thinking I was going to

require all doctors to join, participate, and change the board. Oh,

if I had that power, I'd use it to teach them a few other

things....lol

I find it

> > > > interesting to get a picture of our group and

various

> > > > > issues we've faced. The polls or surveys show

as we all

know that

> > > > > there are no right answers and no absolutes or

consisencies.

> > > > >

> > > > > Sleep Apnea

> > > > >

> > > > > Leanne ran a poll asking if we'd been tested

for sleep

apnea. 52%

> > > > > said yes and 48% no. Right down the middle.

Does that mean

the

> > > > other

> > > > > 48% have no problems or just they haven't been

tested. Of

those

> > > > > tested, how many are on CPAPS or just taking

oxygen for

sleep.

> > > > >

> > > > > Advil

> > > > >

> > > > > There was a poll as to what percent had used

Advil for

coughing or

> > > > > shortness of breath. The results were odd as

all four who

said they

> > > > > had tried it said it had been successful in

helping. No one

said

> > > > they

> > > > > had tried it unsuccessfully. The vast majority

(15) hadn't

tried it

> > > > > for those symptoms.

> > > > >

> > > > > Coke/Pepsi

> > > > >

> > > > > Ok, we knew going in this wouldn't be

close....lol

> > > > >

> > > > > Prednisone

> > > > >

> > > > > 37% said they were on it and had seen a

benefit. 11% on it

with no

> > > > > benefit. 28% have come off it or were coming

off at the

time. 20%

> > > > > chose to not try it. Very mixed as we would

have expected.

I think

> > > > it

> > > > > shows why people need to learn and make their

own decisions

as it

> > > > > clearly shows whats right for one isn't for

others. Still

with all

> > > > > the negatives (and I'm among the haven't and

won't group),

37% are

> > > > on

> > > > > it and feel its benefitting them.

> > > > >

> > > > > Diagnosis

> > > > >

> > > > > 52% here feel totally confident in their

diagnosis as to

> > > > specifically

> > > > > which form of ILD they have. 31% have some

confidence but

not so

> > > > > sure. 17% are completely in the land of

confusion and

frustration.

> > > > > Tell me any other disease n which only half

would feel

confident

> > > > of

> > > > > their diagnosis. And this doesn't even account

for what the

> > > > confident

> > > > > 52% had to go through to get there. Most

diseases, you have

a

> > > > simple

> > > > > test or two and have your answer. Here's the

disease,

here's the

> > > > > treatment. Come back in a year. A good

percentage of those

of us

> > > > > totally confident had to go through a very

invasive surgery.

> > > > >

> > > > > When its easier to get a concensus on Coke

versus Pepsi than

> > > > anything

> > > > > related to our disease, that tells you

something. It just

shows

> > > > that

> > > > > for everything we know about this disease

there are

hundreds of

> > > > > things we don't know. All the more reason we

need each

other.

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > ---------------------------------

> > > > > Looking for last minute shopping deals? Find

them fast with

Yahoo!

> > > > Search.

> > > > >

> > > >

> > >

> > *

> >

> > * *

> > * *

> >

> >*

> >*

> >----------------------------------------------------------

-----

> >*

> >No virus found in this incoming message.

> >Checked by AVG Free Edition.

> >Version: 7.5.516 / Virus Database: 269.19.1/1220 - Release

Date:

1/11/2008 6:09 PM

> >*

> >

>

No virus found in this incoming message.

Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.1/1220 - Release Date: 1/11/2008 6:09 PM

[Guest guest]

Z, In my opinion sending your pulmonologist petinant threads is completely different to having them on here looking at what we're writing.

Love Ze xx I find it> > > > interesting to get a picture of our group and various> > > > > issues we've faced. The polls or surveys show as we all know that> > > > > there are no right answers and no absolutes or consisencies.> > > > >> > > > > Sleep Apnea> > > > >> > > > > Leanne ran a poll asking if we'd been tested for sleep apnea. 52%> > > > > said yes and 48% no. Right down the middle. Does that mean the> > > > other> > > > > 48% have no problems or just they haven't been tested. Of those> > > > > tested, how many are on CPAPS or just taking oxygen for sleep.> > > > >> > > > > Advil> > > > >> > > > > There was a poll as to what percent had used Advil for coughing or> > > > > shortness of breath. The results were odd as all four who said they> > > > > had tried it said it had been successful in helping. No one said> > > > they> > > > > had tried it unsuccessfully. The vast majority (15) hadn't tried it> > > > > for those symptoms.> > > > >> > > > > Coke/Pepsi> > > > >> > > > > Ok, we knew going in this wouldn't be close....lol> > > > >> > > > > Prednisone> > > > >> > > > > 37% said they were on it and had seen a benefit. 11% on it with no> > > > > benefit. 28% have come off it or were coming off at the time. 20%> > > > > chose to not try it. Very mixed as we would have expected. I think> > > > it> > > > > shows why people need to learn and make their own decisions as it> > > > > clearly shows whats right for one isn't for others. Still with all> > > > > the negatives (and I'm among the haven't and won't group), 37% are> > > > on> > > > > it and feel its benefitting them.> > > > >> > > > > Diagnosis> > > > >> > > > > 52% here feel totally confident in their diagnosis as to> > > > specifically> > > > > which form of ILD they have. 31% have some confidence but not so> > > > > sure. 17% are completely in the land of confusion and frustration.> > > > > Tell me any other disease n which only half would feel confident> > > > of> > > > > their diagnosis. And this doesn't even account for what the> > > > confident> > > > > 52% had to go through to get there. Most diseases, you have a> > > > simple> > > > > test or two and have your answer. Here's the disease, here's the> > > > > treatment. Come back in a year. A good percentage of those of us> > > > > totally confident had to go through a very invasive surgery.> > > > >> > > > > When its easier to get a concensus on Coke versus Pepsi than> > > > anything> > > > > related to our disease, that tells you something. It just shows> > > > that> > > > > for everything we know about this disease there are hundreds of> > > > > things we don't know. All the more reason we need each other.> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > > ---------------------------------> > > > > Looking for last minute shopping deals? Find them fast with Yahoo!> > > > Search.> > > > >> > > >> > >> > *> >> > * *> > * *> >> >*> >*> >------------------------------------------------------------------------> >*> >No virus found in this incoming message.> >Checked by AVG Free Edition. > >Version: 7.5.516 / Virus Database: 269.19.1/1220 - Release Date: 1/11/2008 6:09 PM> >*> >>

[Guest guest]

.... I think information or a link is never out of line. Heavens know our Docs need educating too!

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

Re: Re: New Requirement Proposed for Certification in Pulmonology

, I don't think that Docs should be members of this group...however occasionally I send a post to my pulmonologist that has information or a link to a publshed article that I think he might find interesting. If you think that isn't a good idea, I'll refrain from even doing that. This group is too vital and needs to remain as a safe place for all of us.

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 wrote:

Peggy,

I posted this reply because there HAS been a serious suggestion that Medicos might benefit from being allowed to join the Board to help in their understanding of this disease & our experiences in dealing with it.

While I acknowledge that it COULD be of benefit to them & therefore to their patients I can also see the difficulty for the Board in staying the same 'free-to-vent' place that it currently is!

For that reason I would be against allowing Medicos to visit the Board for training purposes!

That's just my 2 cents worth....

in Oz

I find it> > interesting to get a picture of our group and various> > > issues we've faced. The polls or surveys show as we all know that> > > there are no right answers and no absolutes or consisencies.> > >> > > Sleep Apnea> > >> > > Leanne ran a poll asking if we'd been tested for sleep apnea. 52%> > > said yes and 48% no. Right down the middle. Does that mean the> > other> > > 48% have no problems or just they haven't been tested. Of those> > > tested, how many are on CPAPS or just taking oxygen for sleep.> > >> > > Advil> > >> > > There was a poll as to what percent had used Advil for coughing or> > > shortness of breath. The results were odd as all four who said they> > > had tried it said it had been successful in helping. No one said> > they> > > had tried it unsuccessfully. The vast majority (15) hadn't tried it> > > for those symptoms.> > >> > > Coke/Pepsi> > >> > > Ok, we knew going in this wouldn't be close....lol> > >> > > Prednisone> > >> > > 37% said they were on it and had seen a benefit. 11% on it with no> > > benefit. 28% have come off it or were coming off at the time. 20%> > > chose to not try it. Very mixed as we would have expected. I think> > it> > > shows why people need to learn and make their own decisions as it> > > clearly shows whats right for one isn't for others. Still with all> > > the negatives (and I'm among the haven't and won't group), 37% are> > on> > > it and feel its benefitting them.> > >> > > Diagnosis> > >> > > 52% here feel totally confident in their diagnosis as to> > specifically> > > which form of ILD they have. 31% have some confidence but not so> > > sure. 17% are completely in the land of confusion and frustration.> > > Tell me any other disease n which only half would feel confident> > of> > > their diagnosis. And this doesn't even account for what the> > confident> > > 52% had to go through to get there. Most diseases, you have a> > simple> > > test or two and have your answer. Here's the disease, here's the> > > treatment. Come back in a year. A good percentage of those of us> > > totally confident had to go through a very invasive surgery.> > >> > > When its easier to get a concensus on Coke versus Pepsi than> > anything> > > related to our disease, that tells you something. It just shows> > that> > > for everything we know about this disease there are hundreds of> > > things we don't know. All the more reason we need each other.> > >> > >> > >> > >> > >> > >> > > ---------------------------------> > > Looking for last minute shopping deals? Find them fast with Yahoo!> > Search.> > >> >>

No virus found in this incoming message.

Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.1/1220 - Release Date: 1/11/2008 6:09 PM

[Guest guest]

Ummmm....she let you and me in....lol

I find it

> > > interesting to get a picture of our group and various

> > > > issues we've faced. The polls or surveys show as we all

know that

> > > > there are no right answers and no absolutes or

consistencies.

> > > >

> > > > Sleep Apnea

> > > >

> > > > Leanne ran a poll asking if we'd been tested for sleep

apnea. 52%

> > > > said yes and 48% no. Right down the middle. Does that mean

the

> > > other

> > > > 48% have no problems or just they haven't been tested. Of

those

> > > > tested, how many are on CPAPS or just taking oxygen for

sleep.

> > > >

> > > > Advil

> > > >

> > > > There was a poll as to what percent had used Advil for

coughing or

> > > > shortness of breath. The results were odd as all four who

said they

> > > > had tried it said it had been successful in helping. No one

said

> > > they

> > > > had tried it unsuccessfully. The vast majority (15) hadn't

tried it

> > > > for those symptoms.

> > > >

> > > > Coke/Pepsi

> > > >

> > > > Ok, we knew going in this wouldn't be close....lol

> > > >

> > > > Prednisone

> > > >

> > > > 37% said they were on it and had seen a benefit. 11% on it

with no

> > > > benefit. 28% have come off it or were coming off at the

time. 20%

> > > > chose to not try it. Very mixed as we would have expected.

I think

> > > it

> > > > shows why people need to learn and make their own decisions

as it

> > > > clearly shows whats right for one isn't for others. Still

with all

> > > > the negatives (and I'm among the haven't and won't group),

37% are

> > > on

> > > > it and feel its benefitting them.

> > > >

> > > > Diagnosis

> > > >

> > > > 52% here feel totally confident in their diagnosis as to

> > > specifically

> > > > which form of ILD they have. 31% have some confidence but

not so

> > > > sure. 17% are completely in the land of confusion and

frustration.

> > > > Tell me any other disease in which only half would feel

confident

> > > of

> > > > their diagnosis. And this doesn't even account for what the

> > > confident

> > > > 52% had to go through to get there. Most diseases, you have

a

> > > simple

> > > > test or two and have your answer. Here's the disease,

here's the

> > > > treatment. Come back in a year. A good percentage of those

of us

> > > > totally confident had to go through a very invasive surgery.

> > > >

> > > > When its easier to get a concensus on Coke versus Pepsi than

> > > anything

> > > > related to our disease, that tells you something. It just

shows

> > > that

> > > > for everything we know about this disease there are

hundreds of

> > > > things we don't know. All the more reason we need each

other.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > ---------------------------------

> > > > Looking for last minute shopping deals? Find them fast with

Yahoo!

> > > Search.

> > > >

> > >

> >

>

[Guest guest]

Good for you ! You can bet his 'manner' will be enjoyed by others too.

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

Re: Re: New Requirement Proposed for Certification in Pulmonology

Bruce, When I first met my pulmonologist I was very impressed by his knowledge of my disease NSIP.What I did not like was his lack of people skills. He was willing to listen and answer my many questions but I felt that " something" was missing. . I felt that he was more aware of my lungs than of me. I have made it my goal to get him to become aware that these sick lungs come with a person . He spends most of his days at NIH in Washington, DC doing research on NSIP and teaching at Penn. He only sees patients on Mondays but has changed his schedule to see me when I have been troubled. He is accessible by email..it's the face-to- face that he has trouble withI keep mentioning family matters to him, show him pictures of my grand daughter, I even brought him a piece of my pottery. He now smiles more, calls me "" and has asked to be called "Horace" ( poor guy..what a name!). I seem to be making progress!I'm teaching him his own " bedside manner" course!.

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 MarleyBruce Moreland wrote:

I think its fine to send them information, not for them to become active members and under no illusion any would if they could. Now, they do all need to be taught their responsibilities to treat the patient, not just the disease and reminded of their oath to practice. Medical schools in this area recently have talked about increasing courses on "bedside manner" as they state 40% of medicine is listening to the patient. Do your doctors give 40% of their time to doing so? Again, guess I need a translator like does, but I would have hoped the very fact I was even suggesting that I had the ability to influence the requirements for certification would have said it wasn't a plan I intended as real. It was simply pointing out the parts of their education and practice that are missing. That they aren't learning our needs as they are clearly expressed every day here. Sorry to get people stirred up somehow thinking I was going to require all doctors to join, participate, and change the board. Oh, if I had that power, I'd use it to teach them a few other things....lol I find it> > > > interesting to get a picture of our group and various> > > > > issues we've faced. The polls or surveys show as we all know that> > > > > there are no right answers and no absolutes or consisencies.> > > > >> > > > > Sleep Apnea> > > > >> > > > > Leanne ran a poll asking if we'd been tested for sleep apnea. 52%> > > > > said yes and 48% no. Right down the middle. Does that mean the> > > > other> > > > > 48% have no problems or just they haven't been tested. Of those> > > > > tested, how many are on CPAPS or just taking oxygen for sleep.> > > > >> > > > > Advil> > > > >> > > > > There was a poll as to what percent had used Advil for coughing or> > > > > shortness of breath. The results were odd as all four who said they> > > > > had tried it said it had been successful in helping. No one said> > > > they> > > > > had tried it unsuccessfully. The vast majority (15) hadn't tried it> > > > > for those symptoms.> > > > >> > > > > Coke/Pepsi> > > > >> > > > > Ok, we knew going in this wouldn't be close....lol> > > > >> > > > > Prednisone> > > > >> > > > > 37% said they were on it and had seen a benefit. 11% on it with no> > > > > benefit. 28% have come off it or were coming off at the time. 20%> > > > > chose to not try it. Very mixed as we would have expected. I think> > > > it> > > > > shows why people need to learn and make their own decisions as it> > > > > clearly shows whats right for one isn't for others. Still with all> > > > > the negatives (and I'm among the haven't and won't group), 37% are> > > > on> > > > > it and feel its benefitting them.> > > > >> > > > > Diagnosis> > > > >> > > > > 52% here feel totally confident in their diagnosis as to> > > > specifically> > > > > which form of ILD they have. 31% have some confidence but not so> > > > > sure. 17% are completely in the land of confusion and frustration.> > > > > Tell me any other disease n which only half would feel confident> > > > of> > > > > their diagnosis. And this doesn't even account for what the> > > > confident> > > > > 52% had to go through to get there. Most diseases, you have a> > > > simple> > > > > test or two and have your answer. Here's the disease, here's the> > > > > treatment. Come back in a year. A good percentage of those of us> > > > > totally confident had to go through a very invasive surgery.> > > > >> > > > > When its easier to get a concensus on Coke versus Pepsi than> > > > anything> > > > > related to our disease, that tells you something. It just shows> > > > that> > > > > for everything we know about this disease there are hundreds of> > > > > things we don't know. All the more reason we need each other.> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > > ---------------------------------> > > > > Looking for last minute shopping deals? Find them fast with Yahoo!> > > > Search.> > > > >> > > >> > >> > *> >> > * *> > * *> >> >*> >*> >---------------------------------------------------------------> >*> >No virus found in this incoming message.> >Checked by AVG Free Edition. > >Version: 7.5.516 / Virus Database: 269.19.1/1220 - Release Date: 1/11/2008 6:09 PM> >*> >>

No virus found in this incoming message.

Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.1/1220 - Release Date: 1/11/2008 6:09 PM

[Guest guest]

Well done & I bet you forget to charge him Tuition Fees!

GIO I find it> > > > > > interesting to get a picture of our group and various> > > > > > > issues we've faced. The polls or surveys show as we all> > know that> > > > > > > there are no right answers and no absolutes or consisencies.> > > > > > >> > > > > > > Sleep Apnea> > > > > > >> > > > > > > Leanne ran a poll asking if we'd been tested for sleep> > apnea. 52%> > > > > > > said yes and 48% no. Right down the middle. Does that mean> > the> > > > > > other> > > > > > > 48% have no problems or just they haven't been tested. Of> > those> > > > > > > tested, how many are on CPAPS or just taking oxygen for> > sleep.> > > > > > >> > > > > > > Advil> > > > > > >> > > > > > > There was a poll as to what percent had used Advil for> > coughing or> > > > > > > shortness of breath. The results were odd as all four who> > said they> > > > > > > had tried it said it had been successful in helping. No one> > said> > > > > > they> > > > > > > had tried it unsuccessfully. The vast majority (15) hadn't> > tried it> > > > > > > for those symptoms.> > > > > > >> > > > > > > Coke/Pepsi> > > > > > >> > > > > > > Ok, we knew going in this wouldn't be close....lol> > > > > > >> > > > > > > Prednisone> > > > > > >> > > > > > > 37% said they were on it and had seen a benefit. 11% on it> > with no> > > > > > > benefit. 28% have come off it or were coming off at the> > time. 20%> > > > > > > chose to not try it. Very mixed as we would have expected.> > I think> > > > > > it> > > > > > > shows why people need to learn and make their own decisions> > as it> > > > > > > clearly shows whats right for one isn't for others. Still> > with all> > > > > > > the negatives (and I'm among the haven't and won't group),> > 37% are> > > > > > on> > > > > > > it and feel its benefitting them.> > > > > > >> > > > > > > Diagnosis> > > > > > >> > > > > > > 52% here feel totally confident in their diagnosis as to> > > > > > specifically> > > > > > > which form of ILD they have. 31% have some confidence but> > not so> > > > > > > sure. 17% are completely in the land of confusion and> > frustration.> > > > > > > Tell me any other disease n which only half would feel> > confident> > > > > > of> > > > > > > their diagnosis. And this doesn't even account for what the> > > > > > confident> > > > > > > 52% had to go through to get there. Most diseases, you have> > a> > > > > > simple> > > > > > > test or two and have your answer. Here's the disease,> > here's the> > > > > > > treatment. Come back in a year. A good percentage of those> > of us> > > > > > > totally confident had to go through a very invasive surgery.> > > > > > >> > > > > > > When its easier to get a concensus on Coke versus Pepsi than> > > > > > anything> > > > > > > related to our disease, that tells you something. It just> > shows> > > > > > that> > > > > > > for everything we know about this disease there are> > hundreds of> > > > > > > things we don't know. All the more reason we need each> > other.> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > > ---------------------------------> > > > > > > Looking for last minute shopping deals? Find them fast with> > Yahoo!> > > > > > Search.> > > > > > >> > > > > >> > > > >> > > > *> > > >> > > > * *> > > > * *> > > >> > > >*> > > >*> > > >----------------------------------------------------------> > -----> > > >*> > > >No virus found in this incoming message.> > > >Checked by AVG Free Edition.> > > >Version: 7.5.516 / Virus Database: 269.19.1/1220 - Release Date:> > 1/11/2008 6:09 PM> > > >*> > > >> > >> >> > > >> >------------------------------------------------------------------------> >> >No virus found in this incoming message.> >Checked by AVG Free Edition. > >Version: 7.5.516 / Virus Database: 269.19.1/1220 - Release Date: 1/11/2008 6:09 PM> > > >>