New topic..Philadelphia member get together?

[Guest guest]

Pink..King of Prussia is just as

close as the Country Club diner for me.

Adrienne lives in East Mount Airy ..near me...Adrienne

email me at jz1@...

We can meet and go where ever...together!

Anyone else the the Philadelphia area...just post and we'll figure it

all out for a week-end afternoon

lunch...spouses welcome!!!

Patti, Tom, and everyone else I have missed....Let's make this happen

soon!

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

Joyce T Rosenberg wrote:

yes it is all helping my disease

last year they wanted me on the transplant list, i was

listed for a couple of months and now i am on the inactive list

Langhorne PA, past Neshaminy Mall, near Oxford Valley Mall

and Sesame Place

Last November, three of us met at a restaurant near

Neshaminy Mall

i was thinking that maybe we could all meet at County Club

Diner on Cottman Avenue near Northeast High School

it's sort of in the middle

if you, patti, and linda agree, we just need to set a date

and time

of course if some of the other Pennsylvania folk would

like to join us, maybe we can meet at King of Prussia

what do you all think?

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

Pennsylvania

Donate Life

Listed 1/09 Inactive

4/09

www.transplantfund.org

From: pikpobedy <pikpobedy (AT) yahoo (DOT) com>

Subject: 55 year old male Montreal idiopathic

pulmonary fibrosis

To: Breathe-Support@ yahoogroups. com

Date: Sunday, June 14, 2009, 8:17 PM

As I expected I was diagnosed

with IPF last week. The first clues were x-rays last January during and

1 month following what was said to be flu / pneumonia. I vacationed in

the tropics and SCUBA dove once in March. The xrays after this were

"abnormal" and fibrosis was said by my family doctor.

After I went thru: Pulmonlogist, ct-scan, exercise test, breathing

test, pulmonlogist, cardiologist, pulmonlogist and a diagnosis of IPF.

I have to do 8 minute walk test and a cardia echography exercise tes

Pulmonologist said no effective treatments exist, 5-10% possibility

with antiinflamatory drugs with lots oof side effects. Need to get me

on transplant list quickly and see if I should get oxygen.

I`ve been suspecting I had breathing problems since 2006 with the

stairs at work. Prior to that in 2000 at high altitude when climbing

inclines and my problems with summer heat. I had restarted SCUBA diving

then.

Last summer was especially worrying. I had discomfort in my chest.

I feel better in buildings with airconditioning. Outside today or with

windows open I feel a warmth in my chest.

Prior to all this

I was using antihistamines & decongestants in 2007, I stopped. I

was prescribed Nasonex, this gave me a cough and hurt my chest. Later

Rhinocort & lozec. The Rhinocort gave me a cough. I stopped taking

it in April and my coughing subsided 90%. I cough sometimes when I eat

and clear post nasal drip caught in my nasal passage or throat.