Re: Re: New Requirement Proposed for Certification in Pulmonology

[Guest guest]

Bruce, I often forward an informative post

from this group to my pulmonologist.

He sends me his thanks for the information. Should I ask him to

join? He's rather open to my being here

and had encouraged me to find support, even though no PF only groups

were around.

Maybe we should run your idea by our doctors and see what happens.

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:

Leanne

Ok, its just proposed by me, but every future pulmonologist (and for

that matter the existing ones) should have to come read posts here

for a while. Just lurking is fine. They would learn more about

helping PF patients than any course they take. This is life with PF.

Choices, challenges, ups, downs. I'd love to do some surveys of

practicing pulmonologists and see how close their guesses come to

reality. Do they all mention depression? One way or another the

majority of us have it. Do they ask if you feel comfortable with your

diagnosis? Almost half don't. Do they discuss all the aspects of

prednisone and make sure their patients are properly monitored for

the side effects. Do they discuss all the varying views we, the

patients, have on VATS and biopsies? Do those with little PF

experience quickly refer you to someone with more? Do they comprehend

the agony of not getting time with them to learn or not being able to

reach them for just five minutes of questions on the phone? Are they

treating the disease or the patient? How many of them even know of

boards such as this and recommend them to their patients? Other than

as a speaker, if even then, have you ever had a pulmonologist come to

a meeting of your local support group? Do they remember these

paragraphs of their oath as follows in the modern version?

I will remember that there is art to medicine as well as science, and

that warmth, sympathy, and understanding may outweigh the surgeon's

knife or the chemist's drug.

I will not be ashamed to say "I know not," nor will I fail to call in

my colleagues when the skills of another are needed for a patient's

recovery.

I will remember that I do not treat a fever chart, a cancerous

growth, but a sick human being, whose illness may affect the person's

family and economic stability. My responsibility includes these

related problems, if I am to care adequately for the sick.

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.

>

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[Guest guest]

/Peggy....let's not forget, Leanne has the final word and I'm confident she will not allow any "outsider" to contaminate our precious board.

That's my 2 cents worth.

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

Re: New Requirement Proposed for Certification in Pulmonology

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]

Bruce... by golly she did! All of us. lol

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

Re: New Requirement Proposed for Certification in Pulmonology

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.> > > >> > >> >>