Re: Were any of you told about this or any other online support forums by doctor

[Guest guest]

I'm serious about the need, not the expectation.

So, you mention doctors knowing about this board. Ah.

Was anyone here told about this or any other online support forum by

your pulmonologist?

Were any of you told about PFF or CPF?

Were any of you given any places online to go for information?

If there are local support groups in your area for PF, were you told

about them?

Were any of you given any information on how to live with PF?

>

>

> Now Bruce,

>

> This was a perfectly GOOD discussion to get going...the

idea

> had MERIT...no I didn't think you'd be able to influence Medico

training

> but that didn't mean we shouldn't consider the ramifications of

Doctors

> on this Board.

>

> For instance it's quite likely some Doctors out there ARE

> aware of the existence of this Board...as you say they wouldn't

have the

> time & most likely never have the inclination to read through ALL

our

> stuff.

>

> I was just trying to raise the point that even IF a

Medico were

> interested enough I don't think it would be advisable to allow them

> access, either as an active participant OR as a lurker....

>

> I agree ENTIRELY that they would learn a great deal from our

> Board....if there's a way that some of our material could be used I

> would think that could be WONDERFUL! How on earth that could happen

I've

> got no suggestions at this stage!!!!

>

> Your message DID sound like a serious idea Bruce & a good

one at

> that....in fact I think I can remember you SAYING within it that it

WAS

> a serious idea.....now how on earth can I tell if you are

being 'scilly'

> when you yourself state you're being serious !!!!!!!!!

>

> in Oz

>

[Guest guest]

Maybe food for another POLL!

GIO> >> > > > Now Bruce,> > > > This was a perfectly GOOD discussion to get going...the > idea> > had MERIT...no I didn't think you'd be able to influence Medico > training> > but that didn't mean we shouldn't consider the ramifications of > Doctors> > on this Board.> > > > For instance it's quite likely some Doctors out there ARE> > aware of the existence of this Board...as you say they wouldn't > have the> > time & most likely never have the inclination to read through ALL > our> > stuff.> > > > I was just trying to raise the point that even IF a > Medico were> > interested enough I don't think it would be advisable to allow them> > access, either as an active participant OR as a lurker....> > > > I agree ENTIRELY that they would learn a great deal from our> > Board....if there's a way that some of our material could be used I> > would think that could be WONDERFUL! How on earth that could happen > I've> > got no suggestions at this stage!!!!> > > > Your message DID sound like a serious idea Bruce & a good > one at> > that....in fact I think I can remember you SAYING within it that it > WAS> > a serious idea.....now how on earth can I tell if you are > being 'scilly'> > when you yourself state you're being serious !!!!!!!!!> > > > in Oz> >>

[Guest guest]

Bruce, I can answer "No" to all of your

posted questions. I found this group by " Googling PF" and then

support groups. My doctors had no printed information about NSIP,

IPF,or PFF until I brought the pamphlets into the office. My

rehabilitation

therapist had not heard of PFF either.

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'm serious about the need, not the expectation.

So, you mention doctors knowing about this board. Ah.

Was anyone here told about this or any other online support forum by

your pulmonologist?

Were any of you told about PFF or CPF?

Were any of you given any places online to go for information?

If there are local support groups in your area for PF, were you told

about them?

Were any of you given any information on how to live with PF?

>

>

> Now Bruce,

>

> This was a perfectly GOOD discussion to get going...the

idea

> had MERIT...no I didn't think you'd be able to influence Medico

training

> but that didn't mean we shouldn't consider the ramifications of

Doctors

> on this Board.

>

> For instance it's quite likely some Doctors out there ARE

> aware of the existence of this Board...as you say they wouldn't

have the

> time & most likely never have the inclination to read through

ALL

our

> stuff.

>

> I was just trying to raise the point that even IF a

Medico were

> interested enough I don't think it would be advisable to allow them

> access, either as an active participant OR as a lurker....

>

> I agree ENTIRELY that they would learn a great deal from our

> Board....if there's a way that some of our material could be used I

> would think that could be WONDERFUL! How on earth that could

happen

I've

> got no suggestions at this stage!!!!

>

> Your message DID sound like a serious idea Bruce & a good

one at

> that....in fact I think I can remember you SAYING within it that

it

WAS

> a serious idea.....now how on earth can I tell if you are

being 'scilly'

> when you yourself state you're being serious !!!!!!!!!

>

> in Oz

>

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[Guest guest]

I found this site via google. I'd tried a couple of others, but they weren't for me, they were either overly demanding, or rarely used. I wasn't given any support info from my chest physician, and some of the advice I'd been given by her registrar has turned out to be plain wrong, like putting petroleum jelly up my nose to alleviate the soreness. I haven't found a PF support group based in the UK, so that may be why I wasn't given that kind of info. For the last 8-10 years, whatever it was since my PF diagnosis the docs always had such a laid back attitude to me having PF, that I really didn't think it was that big a deal, so it was a traumatic shock to find out just how ill I'd suddenly become. I had thought that I was going to be given some antibiotics, get over the latest bought of chest infection and be sent home again. Not find out that my lungs were pretty much useless and that they think I should have some new ones. I think it would have been much less of a shock and that I would have badgered my gp's more for better treatment if I'd been more aware of what MIGHT happen to me.

Love Ze xx> >> > > > Now Bruce,> > > > This was a perfectly GOOD discussion to get going...the > idea> > had MERIT...no I didn't think you'd be able to influence Medico > training> > but that didn't mean we shouldn't consider the ramifications of > Doctors> > on this Board.> > > > For instance it's quite likely some Doctors out there ARE> > aware of the existence of this Board...as you say they wouldn't > have the> > time & most likely never have the inclination to read through ALL > our> > stuff.> > > > I was just trying to raise the point that even IF a > Medico were> > interested enough I don't think it would be advisable to allow them> > access, either as an active participant OR as a lurker....> > > > I agree ENTIRELY that they would learn a great deal from our> > Board....if there's a way that some of our material could be used I> > would think that could be WONDERFUL! How on earth that could happen > I've> > got no suggestions at this stage!!!!> > > > Your message DID sound like a serious idea Bruce & a good > one at> > that....in fact I think I can remember you SAYING within it that it > WAS> > a serious idea.....now how on earth can I tell if you are > being 'scilly'> > when you yourself state you're being serious !!!!!!!!!> > > > in Oz> >>

[Guest guest]

Well, I was given none of the information. Everything I found was

through searching online.

> > >

> > >

> > > Now Bruce,

> > >

> > > This was a perfectly GOOD discussion to get going...the

> > idea

> > > had MERIT...no I didn't think you'd be able to influence Medico

> > training

> > > but that didn't mean we shouldn't consider the ramifications of

> > Doctors

> > > on this Board.

> > >

> > > For instance it's quite likely some Doctors out there ARE

> > > aware of the existence of this Board...as you say they wouldn't

> > have the

> > > time & most likely never have the inclination to read through

ALL

> > our

> > > stuff.

> > >

> > > I was just trying to raise the point that even IF a

> > Medico were

> > > interested enough I don't think it would be advisable to allow

them

> > > access, either as an active participant OR as a lurker....

> > >

> > > I agree ENTIRELY that they would learn a great deal from our

> > > Board....if there's a way that some of our material could be

used I

> > > would think that could be WONDERFUL! How on earth that could

happen

> > I've

> > > got no suggestions at this stage!!!!

> > >

> > > Your message DID sound like a serious idea Bruce & a good

> > one at

> > > that....in fact I think I can remember you SAYING within it

that it

> > WAS

> > > a serious idea.....now how on earth can I tell if you are

> > being 'scilly'

> > > when you yourself state you're being serious !!!!!!!!!

> > >

> > > in Oz

> > >

> >

>