Support Groups at Penn or Temple Lung Center

[Guest guest]

I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person?

Thank you

[Guest guest]

>

>  I was curious if anyone knows if Penn or Temple has any support groups that

meet on any type of regular basis (i.e. Monthly, Quarterly)?  And if so is there

a contact person?

> Thank you

>

Temple has a meeting almost every month I went to my 1st one in March.

The are on 4th Tuesday from 2:30pm to 4:00pm classroom C&D.

The next on 6/23/09 will have Fox talking on the Gift of life.

Also " organ donation, procuremnet, regulations " will be presented.

I know of no offical contact but Gwendolan B. Vance at vancegb@...

could help with questions.

[Guest guest]

Adrienne

Penn has a lung transplant support group that meets the second monday of the month

contact the social worker -- Jeannie

Temple has a support group, don't know details,

you can get more details about both support groups on line

do you live in Philly?

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support Date: Sunday, May 31, 2009, 2:47 PM

I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person?

Thank you

[Guest guest]

Adrienne

Penn has a lung transplant support group that meets the second monday of the month

contact the social worker -- Jeannie

Temple has a support group, don't know details,

you can get more details about both support groups on line

do you live in Philly?

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support Date: Sunday, May 31, 2009, 2:47 PM

I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person?

Thank you

[Guest guest]

Hi Joyce,

Thanks for the information. Do you know if the group is specifically for people who have been recently diagnosed with IPF or just transplant members.? I do live in Philly.

Adrienne

From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com>Subject: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support@ yahoogroups.. comDate: Sunday, May 31, 2009, 2:47 PM

I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person?

Thank you

[Guest guest]

Thanks Luke,

I went to a group at Temple back in September or October which was to meet quarterly, but was told the funding was discontinued. Is the group you are referring to for IPF folks or any breathing problem?

Adrienne

Subject: Re: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support Date: Monday, June 1, 2009, 1:20 AM

>> I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person?> Thank you>Temple has a meeting almost every month I went to my 1st one in March.The are on 4th Tuesday from 2:30pm to 4:00pm classroom C & D.The next on 6/23/09 will have Fox talking on the Gift of life.Also "organ donation, procuremnet, regulations" will be presented.I know of no offical contact but Gwendolan B. Vance at vancegb (AT) tuhs (DOT) temple.edu could help with questions.

[Guest guest]

Thanks Luke,

I went to a group at Temple back in September or October which was to meet quarterly, but was told the funding was discontinued. Is the group you are referring to for IPF folks or any breathing problem?

Adrienne

Subject: Re: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support Date: Monday, June 1, 2009, 1:20 AM

>> I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person?> Thank you>Temple has a meeting almost every month I went to my 1st one in March.The are on 4th Tuesday from 2:30pm to 4:00pm classroom C & D.The next on 6/23/09 will have Fox talking on the Gift of life.Also "organ donation, procuremnet, regulations" will be presented.I know of no offical contact but Gwendolan B. Vance at vancegb (AT) tuhs (DOT) temple.edu could help with questions.

[Guest guest]

Hi ,

Thanks for the info.

Adrienne

I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person?

Thank you

[Guest guest]

AdrienneI'm guessing this one is the one you are already talking about:Philadelphia, PA

In partnership with Temple University Hospital

Meets: 2008 Meetings March 3 and June 6 confirmed

Schedule: All meetings from 2:00 PM - 3:30 PM

Location: Temple University Hospital, 3401 N. Broad St (Temple Lung Center); Parkinson Pavilion 9th Floor Conference Room

Contact: For more information or to register, please contact Steinke at or by email at karen.steinke@...Neither PFF or CPF list any others in Philadelphia. As to general lung support groups then thats a matter of the specific group and opinion. Some go to betterbreathers and find it helpful. You just have to be careful because much of what is said is not right for you. I personally don't have any desire to go where I'm the only PF'er among a group of COPD'ers. > >> > I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person?> > Thank you> >> Temple has a meeting almost every month I went to my 1st one in March.> The are on 4th Tuesday from 2:30pm to 4:00pm classroom C & D.> The next on 6/23/09 will have Fox talking on the Gift of life.> Also "organ donation, procuremnet, regulations" will be presented.> I know of no offical contact but Gwendolan B. Vance at vancegb (AT) tuhs (DOT) temple.edu could help with questions.>

[Guest guest]

Adrienne, Where in Philadelphia?

I've lived in the Philadelphia my entire life (except for 1965-1966)

I now live in Blue Bell...right outside the city. I grew up in West Oak

Lane, My husband Mike is from Oxford Circle!

Do you go to Penn or Temple for Lung" pulmodudes?"

What high school? Girls High 1961 for me!

Sorry I'm being nosy...just that you are another Philly girl..there

is Joyce Rosenberg and Patti Friend( She's now in Cherry Hill)

but that's really Philly too! I lived there for 8 years.

We will have to meet...put faces to names.

Yo...Pink Joyce and Patti chime in here!!!

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07 and Reynaud’s too!

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara

“I’m

gonna be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

Adrienne Bishop wrote:

Hi Joyce,

Thanks for the information. Do you know if the group is

specifically for people who have been recently diagnosed with IPF or

just transplant members.? I do live in Philly.

Adrienne

From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com>

Subject: Support Groups at Penn or Temple Lung Center

To: Breathe-Support@ yahoogroups.. com

Date: Sunday, May 31, 2009, 2:47 PM

I was curious if anyone knows if Penn or

Temple has any support groups that meet on any type of regular basis

(i.e. Monthly, Quarterly)? And if so is there a contact person?

Thank you

[Guest guest]

Adrienne, Where in Philadelphia?

I've lived in the Philadelphia my entire life (except for 1965-1966)

I now live in Blue Bell...right outside the city. I grew up in West Oak

Lane, My husband Mike is from Oxford Circle!

Do you go to Penn or Temple for Lung" pulmodudes?"

What high school? Girls High 1961 for me!

Sorry I'm being nosy...just that you are another Philly girl..there

is Joyce Rosenberg and Patti Friend( She's now in Cherry Hill)

but that's really Philly too! I lived there for 8 years.

We will have to meet...put faces to names.

Yo...Pink Joyce and Patti chime in here!!!

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07 and Reynaud’s too!

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara

“I’m

gonna be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

Adrienne Bishop wrote:

Hi Joyce,

Thanks for the information. Do you know if the group is

specifically for people who have been recently diagnosed with IPF or

just transplant members.? I do live in Philly.

Adrienne

From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com>

Subject: Support Groups at Penn or Temple Lung Center

To: Breathe-Support@ yahoogroups.. com

Date: Sunday, May 31, 2009, 2:47 PM

I was curious if anyone knows if Penn or

Temple has any support groups that meet on any type of regular basis

(i.e. Monthly, Quarterly)? And if so is there a contact person?

Thank you

[Guest guest]

Adrienne, Where in Philadelphia?

I've lived in the Philadelphia my entire life (except for 1965-1966)

I now live in Blue Bell...right outside the city. I grew up in West Oak

Lane, My husband Mike is from Oxford Circle!

Do you go to Penn or Temple for Lung" pulmodudes?"

What high school? Girls High 1961 for me!

Sorry I'm being nosy...just that you are another Philly girl..there

is Joyce Rosenberg and Patti Friend( She's now in Cherry Hill)

but that's really Philly too! I lived there for 8 years.

We will have to meet...put faces to names.

Yo...Pink Joyce and Patti chime in here!!!

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07 and Reynaud’s too!

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara

“I’m

gonna be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

Adrienne Bishop wrote:

Hi Joyce,

Thanks for the information. Do you know if the group is

specifically for people who have been recently diagnosed with IPF or

just transplant members.? I do live in Philly.

Adrienne

From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com>

Subject: Support Groups at Penn or Temple Lung Center

To: Breathe-Support@ yahoogroups.. com

Date: Sunday, May 31, 2009, 2:47 PM

I was curious if anyone knows if Penn or

Temple has any support groups that meet on any type of regular basis

(i.e. Monthly, Quarterly)? And if so is there a contact person?

Thank you

[Guest guest]

I wish there was a way to find out who in our areas might have PF. Doctors, hospitals, or therapy places aren't allowed to say because of privacy laws, but just through the nine weeks I spent in pulmonary therapy in town, I became aware of two others right there. So there must be more. Finding them and establishing our own support/lunch group would be nice, if only to call each other and see how the other is doing.

Bill IPF 10/08

N. of town, PA We found the real 'Hotel California' and the 'Seinfeld' diner. What will you find? Explore WhereItsAt.com.

[Guest guest]

Joyce,

I just approved Patti's membership under a new email address so she should be back on today. Her old one was still there and appeared to be working so I'm not sure what the problem was but whatever it was she should be able to log in without difficulty now.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, June 2, 2009 8:25:12 AMSubject: Re: Support Groups at Penn or Temple Lung Center

I agree, it's time for another luncheon or dinner or brunch

Spoke to Patti Sunday nite

she doesn't remember how to get into this site

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com>Subject: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support@ yahoogroups. . comDate: Sunday, May 31, 2009, 2:47 PM

I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person?

Thank you

[Guest guest]

Joyce,

I just approved Patti's membership under a new email address so she should be back on today. Her old one was still there and appeared to be working so I'm not sure what the problem was but whatever it was she should be able to log in without difficulty now.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, June 2, 2009 8:25:12 AMSubject: Re: Support Groups at Penn or Temple Lung Center

I agree, it's time for another luncheon or dinner or brunch

Spoke to Patti Sunday nite

she doesn't remember how to get into this site

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com>Subject: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support@ yahoogroups. . comDate: Sunday, May 31, 2009, 2:47 PM

I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person?

Thank you

[Guest guest]

Adrienne

it includes people prior to transplant too

call jeannie miller, social worker at penn for more info

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support Date: Monday, June 1, 2009, 5:17 PM

Hi Joyce,

Thanks for the information. Do you know if the group is specifically for people who have been recently diagnosed with IPF or just transplant members.? I do live in Philly.

Adrienne

From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com>Subject: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support@ yahoogroups. . comDate: Sunday, May 31, 2009, 2:47 PM

I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person?

Thank you

[Guest guest]

Adrienne

it includes people prior to transplant too

call jeannie miller, social worker at penn for more info

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support Date: Monday, June 1, 2009, 5:17 PM

Hi Joyce,

Thanks for the information. Do you know if the group is specifically for people who have been recently diagnosed with IPF or just transplant members.? I do live in Philly.

Adrienne

From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com>Subject: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support@ yahoogroups. . comDate: Sunday, May 31, 2009, 2:47 PM

I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person?

Thank you

[Guest guest]

st mary has a group -- better breathers -- i went a few times but of course most members are copd-- for more info on that group call Hartman or (i forget her last name) both are respiratory therapists at St

i did go there for pulmonary rehab and it was an excellent program

they even asked a man who has ipf to come so I could meet him

after the second time i met him, he got his transplant

did your doc give you a prescription for a pulmonary rehab program?

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support Date: Monday, June 1, 2009, 5:20 PM

Thanks Luke,

I went to a group at Temple back in September or October which was to meet quarterly, but was told the funding was discontinued. Is the group you are referring to for IPF folks or any breathing problem?

Adrienne

From: Luke J. Nester <ljnester (AT) yahoo (DOT) com>Subject: Re: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support@ yahoogroups. comDate: Monday, June 1, 2009, 1:20 AM

>> I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person?> Thank you>Temple has a meeting almost every month I went to my 1st one in March.The are on 4th Tuesday from 2:30pm to 4:00pm classroom C & D.The next on 6/23/09 will have Fox talking on the Gift of life.Also "organ donation, procuremnet, regulations" will be presented.I know of no offical contact but Gwendolan B. Vance at vancegb (AT) tuhs (DOT) temple.edu could help with

questions.

[Guest guest]

Thanks Beth

i just cut and pasted what you wrote and sent it to patti in my other email

hope she can figure it out

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support Date: Tuesday, June 2, 2009, 8:34 AM

Joyce,

I just approved Patti's membership under a new email address so she should be back on today. Her old one was still there and appeared to be working so I'm not sure what the problem was but whatever it was she should be able to log in without difficulty now.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, June 2, 2009 8:25:12 AMSubject: Re: Support Groups at Penn or Temple Lung Center

I agree, it's time for another luncheon or dinner or brunch

Spoke to Patti Sunday nite

she doesn't remember how to get into this site

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com>Subject: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support@ yahoogroups. . comDate: Sunday, May 31, 2009, 2:47 PM

I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person?

Thank you

[Guest guest]

Hi ,

I live in the West Mt. Airy section of Philly and go to Temple. I have lived here all my life other than my college years. I have many friends who went to Girls High School, but I went to the other GHS (Germantown High School). It is a shame that there are not more support groups for IPF. Maybe if we complain enough there will be more.

Take care!!

From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com>Subject: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support@ yahoogroups. . comDate: Sunday, May 31, 2009, 2:47 PM

I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person?

Thank you

[Guest guest]

Hi Bruce,

Thanks for the info. I emailed that awhile back and never heard from her but didn't have a phone number. I believe that group has lost its funding, but I'll continue to search.

Subject: Re: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support Date: Monday, June 1, 2009, 9:28 PM

AdrienneI'm guessing this one is the one you are already talking about:Philadelphia, PAIn partnership with Temple University HospitalMeets: 2008 Meetings March 3 and June 6 confirmed Schedule: All meetings from 2:00 PM - 3:30 PMLocation: Temple University Hospital, 3401 N. Broad St (Temple Lung Center); Parkinson Pavilion 9th Floor Conference RoomContact: For more information or to register, please contact Steinke at or by email at karen.steinke@ tuhs.temple. eduNeither PFF or CPF list any others in Philadelphia. As to general lung support groups then thats a matter of the specific group and opinion. Some go to betterbreathers and find it helpful. You just have to be careful because much of what is said is not

right for you. I personally don't have any desire to go where I'm the only PF'er among a group of COPD'ers. >

>> > I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person?> > Thank you> >> Temple has a meeting almost every month I went to my 1st one in March.> The are on 4th Tuesday from 2:30pm to 4:00pm classroom C & D.> The next on 6/23/09 will have Fox talking on the Gift of life.> Also "organ donation, procuremnet, regulations" will be presented.> I know of no offical contact but Gwendolan B. Vance at vancegb (AT) tuhs (DOT) temple.edu could help with questions.>

[Guest guest]

Hi Bruce,

Thanks for the info. I emailed that awhile back and never heard from her but didn't have a phone number. I believe that group has lost its funding, but I'll continue to search.

Subject: Re: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support Date: Monday, June 1, 2009, 9:28 PM

AdrienneI'm guessing this one is the one you are already talking about:Philadelphia, PAIn partnership with Temple University HospitalMeets: 2008 Meetings March 3 and June 6 confirmed Schedule: All meetings from 2:00 PM - 3:30 PMLocation: Temple University Hospital, 3401 N. Broad St (Temple Lung Center); Parkinson Pavilion 9th Floor Conference RoomContact: For more information or to register, please contact Steinke at or by email at karen.steinke@ tuhs.temple. eduNeither PFF or CPF list any others in Philadelphia. As to general lung support groups then thats a matter of the specific group and opinion. Some go to betterbreathers and find it helpful. You just have to be careful because much of what is said is not

right for you. I personally don't have any desire to go where I'm the only PF'er among a group of COPD'ers. >

>> > I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person?> > Thank you> >> Temple has a meeting almost every month I went to my 1st one in March.> The are on 4th Tuesday from 2:30pm to 4:00pm classroom C & D.> The next on 6/23/09 will have Fox talking on the Gift of life.> Also "organ donation, procuremnet, regulations" will be presented.> I know of no offical contact but Gwendolan B. Vance at vancegb (AT) tuhs (DOT) temple.edu could help with questions.>

[Guest guest]

Adrienne, Go OWLS

My son and d-i-l live  in West Mount Airy...right on Lincoln Drive

and Mt Pleasant !

I grew up in West Oak Lane at Fayette and Vernon road!

About three blocks from what used to be Temple Stadium!

I graduated from Temple a very long time

ago...1965!

We could start our own support group....there are 4 of us living not

too far away from each other.

Joyce lives in Langhorn, Patti lives in Cherry Hill, I live in Blue

Bell and you live in Mt Airy.

We're really only 45 minutes at the most from any one of us!

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild†PH/10/07 and Reynaud’s too!!

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara      

“I’m

gonna be iron like a lion in Zionâ€Â  Bob Marley

Vinca

Minor-periwinkle is my flower

 

 

Adrienne Bishop wrote:

Hi ,

I live in the West Mt. Airy section of Philly and go to

Temple.  I have lived here all my life other than my college years.  I

have many friends who went to Girls High School, but I went to the

other GHS (Germantown High School).  It is a shame that there are not

more support groups for IPF.  Maybe if we complain enough there will be

more.

Take care!!

From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT)

com>

Subject: Support Groups at Penn or Temple Lung Center

To: Breathe-Support@ yahoogroups. . com

Date: Sunday, May 31, 2009, 2:47 PM

 I was curious if anyone knows

if Penn or Temple has any support groups that meet on any type of

regular basis (i.e. Monthly, Quarterly)?  And if so is there a contact

person?

Thank you

[Guest guest]

Adrienne, I go to The U of P Lung

Center...Dr. Horace Delisser MD,

I am not a candidate for transplant because he says that I'm not sick

enough and I'm 65+

I'll take the " not sick enough" reason !!!!  the 65+ I can't do

anything about anyway.

I have been stable  with my form of PF ( NSIP) since diagnosis Summer

of 2005..Prednisone

and Imuran, Mepron and so-o-o-o many more drugs to counteract the side

effects of them.

But I am stable !!!!

I also use a more local pulmonologist at Montgomery Hospital because I

can get to him faster( 10 MINUTES)

and he's more available if I need attention quickly...Dr. Delisser

teaches, does research at NIH and

only sees patients twice monthly on Mondays!!! I email him and call his

clinical nurse with questions and

have all my major testing ( PFT's, HRCT. and echo-cardiogram and 6

minute walk) done at Penn. The local

doc keeps me healthy..sort of!  I did spend 3 miserable days in the

hospital in March with acute bronchitis that

no one( my GP and the local pulmo) could get under control without mega

doses of steroids and anti-biotics!

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild†PH/10/07 and Reynaud’s too!!

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara      

“I’m

gonna be iron like a lion in Zionâ€Â  Bob Marley

Vinca

Minor-periwinkle is my flower

 

 

Zion wrote:

Adrienne, Go OWLS

My son and d-i-l live  in West Mount Airy...right on Lincoln Drive

and Mt Pleasant !

I grew up in West Oak Lane at Fayette and Vernon road!

About three blocks from what used to be Temple Stadium!

I graduated from Temple a very long time

ago...1965!

We could start our own support group....there are 4 of us living not

too far away from each other.

Joyce lives in Langhorn, Patti lives in Cherry Hill, I live in Blue

Bell and you live in Mt Airy.

We're really only 45 minutes at the most from any one of us!

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild†PH/10/07 and Reynaud’s too!!

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara      

“I’m

gonna be iron like a lion in Zionâ€Â  Bob Marley

Vinca

Minor-periwinkle is my flower

 

 

Adrienne Bishop wrote:

Hi ,

I live in the West Mt. Airy section of Philly and go to

Temple.  I have lived here all my life other than my college years.  I

have many friends who went to Girls High School, but I went to the

other GHS (Germantown High School).  It is a shame that there are not

more support groups for IPF.  Maybe if we complain enough there will be

more.

Take care!!

From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT)

com>

Subject: Support Groups at Penn or Temple Lung Center

To: Breathe-Support@ yahoogroups. . com

Date: Sunday, May 31, 2009, 2:47 PM

 I was curious if anyone knows

if Penn or Temple has any support groups that meet on any type of

regular basis (i.e. Monthly, Quarterly)?  And if so is there a contact

person?

Thank you

[Guest guest]

Adrienne

we need to find other people in this area with this disease and form our own support group

just curious, are you a college age student going to Temple or an adult who has returned to college?

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support Date: Tuesday, June 2, 2009, 10:03 PM

Hi ,

I live in the West Mt. Airy section of Philly and go to Temple. I have lived here all my life other than my college years. I have many friends who went to Girls High School, but I went to the other GHS (Germantown High School). It is a shame that there are not more support groups for IPF. Maybe if we complain enough there will be more.

Take care!!

From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com>Subject: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support@ yahoogroups. . comDate: Sunday, May 31, 2009, 2:47 PM

I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person?

Thank you