Re: How to find local area IPFers

[Guest guest]

Bill

Perhaps if you wanted to hold a meeting or start a support group

gathering the easy way would be to post notices in the Pulmonologists

offices or put flyers on display there.

Privacy does pretty much prevent any more active way, so a passive

method like this would probably be the best shot.

>

> I know privacy laws are a big deal with health workers but I'm

wondering

> how I could find other people with IPF here in the Lehigh Valley

(town,

> PA) area where I live. I've found one, but I know there are more.

And

> I've found one single-lung transplant recipient, which I will have,

and he's a

> big help. I feel there must be more of us here, and the support we

could

> give each other could help a lot. But the doctors and hospitals aren't

> allowed to tell me. There are people in Philadelphia on the list

who get

> together, but driving two hours each way is a little tough for me with

the

> oxygen and I hate to leave my dog alone all day. Any ideas?

>

> Bill IPF 10/08

> N. E. PA

> **************A Good Credit Score is 700 or Above. See yours in just 2

easy

> steps!

>

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[Guest guest]

I feel the same way you do. I live in San ,TX & one would think there would be a support group here, but there isn't. So i spoke to the "Jan" the leader for Houston Support Group & I suggested maybe i could start one here & she says they've been looking for someone to start one here. Anyway, i asked her how will people since i have yet to meet a single person PF.. & up until i called her she's the first person that i even speak to that has PF, she said don't worry they will find you. So it's maybe something to consider. I am.

Dot/42/UIP/10/08/SA,TX

Subject: How to find local area IPFersTo: Breathe-Support Date: Wednesday, September 9, 2009, 8:39 AM

I know privacy laws are a big deal with health workers but I'm wondering how I could find other people with IPF here in the Lehigh Valley (town, PA) area where I live. I've found one, but I know there are more. And I've found one single-lung transplant recipient, which I will have, and he's a big help. I feel there must be more of us here, and the support we could give each other could help a lot. But the doctors and hospitals aren't allowed to tell me. There are people in Philadelphia on the list who get together, but driving two hours each way is a little tough for me with the oxygen and I hate to leave my dog alone all day. Any ideas?

Bill IPF 10/08

N. E. PA

[Guest guest]

Bill,

Do you think the hospitals would let you post a flyer informing folks with IPF that if they are interested in a support group they could contact you? Maybe you could put a little ad in the local paper asking for folks. I think it's great that you want to do this. As big as Philly is I don't think there is a support group here either. Temple had one for awhile, but lost the funding so needless to say they stopped so I was told.

Good Luck,

AB

Subject: How to find local area IPFersTo: Breathe-Support Date: Wednesday, September 9, 2009, 9:39 AM

I know privacy laws are a big deal with health workers but I'm wondering how I could find other people with IPF here in the Lehigh Valley (town, PA) area where I live. I've found one, but I know there are more. And I've found one single-lung transplant recipient, which I will have, and he's a big help. I feel there must be more of us here, and the support we could give each other could help a lot. But the doctors and hospitals aren't allowed to tell me. There are people in Philadelphia on the list who get together, but driving two hours each way is a little tough for me with the oxygen and I hate to leave my dog alone all day. Any ideas?

Bill IPF 10/08

N. E. PA

[Guest guest]

I will be happy to help anyone who wants to start a support group get started, I

know the Foundation & Coalition would be happy to help as well. It is all about

helping other patients with this disease. It isn't that hard to start, however,

keeping up as it grows, becomes time consuming. It becomes like your

child....it has to be fed, grown, dressed to impress (lol), and no matter what

time of the day or night someone needs to be able to talk to new members if they

need help or just need to talk. You can never give medical advice and have to

be very, very careful about that. It is a lot to do, but ohhhhh so worth it if

you have the energy to get through most days.

If I can help in anyway I am looking forward to hearing from you

Jan

Jan3145@...

>

> I know privacy laws are a big deal with health workers but I'm wondering

> how I could find other people with IPF here in the Lehigh Valley (town,

> PA) area where I live. I've found one, but I know there are more. And

> I've found one single-lung transplant recipient, which I will have, and he's a

> big help. I feel there must be more of us here, and the support we could

> give each other could help a lot. But the doctors and hospitals aren't

> allowed to tell me. There are people in Philadelphia on the list who get

> together, but driving two hours each way is a little tough for me with the

> oxygen and I hate to leave my dog alone all day. Any ideas?

>

> Bill IPF 10/08

> N. E. PA

> **************A Good Credit Score is 700 or Above. See yours in just 2 easy

> steps!

>

(http://pr.atwola.com/promoclk/100126575x1222846709x1201493018/aol?redir=http://\

www.freecreditreport.com/pm/default.aspx?sc=668072 & hmpgID=115 & bcd

> =JulystepsfooterNO115)

>

[Guest guest]

Hi Bill,

If I read you right you are just wanting to meet other IPFers.

If you go to www.lungusa.org which I think is the American Lung Association's

web site, you can enter your zip code and a list of places near you will come

up. Most of them have meetings for people with lung diseases. Not all with IPF.

But, if you can go to a local meeting or more than one site near you, you might

begin to meet people with IPF at those meetings.

Hope that helps.

Terre, IPF 6/08, FL

> >

> > I know privacy laws are a big deal with health workers but I'm wondering

> > how I could find other people with IPF here in the Lehigh Valley (town,

> > PA) area where I live. I've found one, but I know there are more. And

> > I've found one single-lung transplant recipient, which I will have, and he's

a

> > big help. I feel there must be more of us here, and the support we could

> > give each other could help a lot. But the doctors and hospitals aren't

> > allowed to tell me. There are people in Philadelphia on the list who get

> > together, but driving two hours each way is a little tough for me with the

> > oxygen and I hate to leave my dog alone all day. Any ideas?

> >

> > Bill IPF 10/08

> > N. E. PA

> > **************A Good Credit Score is 700 or Above. See yours in just 2 easy

> > steps!

> >

(http://pr.atwola.com/promoclk/100126575x1222846709x1201493018/aol?redir=http://\

www.freecreditreport.com/pm/default.aspx?sc=668072 & hmpgID=115 & bcd

> > =JulystepsfooterNO115)

> >

>

[Guest guest]

Terre

In most of those groups you'll never see another PF patient or at most

one. Much of the information discussed will be wrong for PF'ers. There

are listings of groups for pf on both PPF's site and CPF's.

> > >

> > > I know privacy laws are a big deal with health workers but I'm

wondering

> > > how I could find other people with IPF here in the Lehigh Valley

(town,

> > > PA) area where I live. I've found one, but I know there are

more. And

> > > I've found one single-lung transplant recipient, which I will

have, and he's a

> > > big help. I feel there must be more of us here, and the support

we could

> > > give each other could help a lot. But the doctors and hospitals

aren't

> > > allowed to tell me. There are people in Philadelphia on the

list who get

> > > together, but driving two hours each way is a little tough for me

with the

> > > oxygen and I hate to leave my dog alone all day. Any ideas?

> > >

> > > Bill IPF 10/08

> > > N. E. PA

> > > **************A Good Credit Score is 700 or Above. See yours in

just 2 easy

> > > steps!

> > >

(http://pr.atwola.com/promoclk/100126575x1222846709x1201493018/aol?redir\

=http://www.freecreditreport.com/pm/default.aspx?sc=668072 & hmpgID=115 & bc\

d

> > > =JulystepsfooterNO115)

> > >

> >

>