Diane

[Guest guest]

Diane,

Welcome to Breathe Support! As we always say around here, we're sorry that you had reason to look for a group like this but since you did we're glad you found us.

Where in NY are you? I lived most of my life in Rockland County, just up the Hudson River a few miles from the city. I moved to North Carolina about a year and a half ago but when I lived in NY I went to Cornell/Columbia in Manhattan to Dr. Simonelli. He's excellent and very very kind.

I do understand how you are feeling. I was 46, just a couple of years older than you when I was diagnosed and it was very scary. But here I am 3 years later and I'm in exactly the same shape I was 3 years ago. I've stayed stable and for that I am profoundly grateful.

If you do have Lupus that is likely something they will want to evaluate and treat. The good news about that is treating an underlying auto-immune disease can often arrest or dramatically slow the progress of the lung disease. I have dermatomyositis and am being treated for that for the same reasons.

If you are not in the NY metro area, check out www.ipfnet.org. You will find there a map with links to 22 different medical centers with interstitial lung disease programs. There are many other excellent programs throughout the country but this can be a helpful place to start. There is a center in Rochester, NY. There is Yale in Hartford CT. There are places where you can receive a full evaluation and get much more information on what is going on with your lungs.

Please stick around, read older posts and ask lots of questions. I hope we can be helpful to you!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Monday, June 29, 2009 5:23:49 PMSubject: Re: Peggy C

HELLO,

MY NAME IS DIANE AND I LIVE IN NEW YORK. I RECENTLY HAVE BEEN DIAGNOSED WITH PULMONARY FIBROSIS, I'M TRYING TO FIND INFORMATION ON THIS DISEASE AS WELL AS A DOCTOR WHO SPECIALIZES IN THIS. I DO NOT KNOW WHICH TYPE, I WAS TOLD I WOULD NEED A BIOPSY TO GET FURTHER DETAILS. I AM 43 AND VERY ACTIVE WITH MY 6 CHILDREN. I AM VERY FRIGHTENED TO HEAR HOW SERIOUS AND PROBABLY FATAL THIS MAY BE. IS ANYONE FROM THE NY AREA AND/OR IS THERE A PLACE THAT I SHOULD GO TO GET THE BEST OR MOST UP TO DATE CARE OR TREATMENT? MY DOCTOR ALSO BELIEVES THAT I MAY HAVE LUPUS AND I KNOW I HAVE THYROID DISEASE AND RENAUDS.

I AM LOOKING FORWARD TO ANY ADVICE OR IMPUT. THANK YOU, /DIANE

Subject: Peggy CTo: Breathe-Support Date: Monday, June 29, 2009, 4:58 PM

Peggy,

Wow...I've been thinking of you all day today wondering how it was going but I didn't want to bother you in the middle of all that fun.

I'm so glad you did this trip and had a great time. I'm also glad that Bill pushed you down close to the falls and even more glad that he didn't just push you over the falls. I notice it was Bill doing the pushing and not . might have been too tempted to send you swimming huh? LOL You know I'm kidding, just so happy you got to do this. Sounds like soooo much fun! I missed you!

Hugs,

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Monday, June 29, 2009 4:37:37 PMSubject: Hello Group, WE MADE IT.. We got in last night about 10:PM and went to bed pretty quickly. Then I slept most of the day. I had a good good time. My goodness I was waited on hand and foot... what else cold a person ask.. T & Bill pushed me down close to the falls and it was very pretty and SOOO NICE TO SEE ANYTHING BUT GREEN WALLS.. LOL I walked a short distance to the cable in front of the falls so I thoroughly enjoyed myself.

I made the trip real well. I used 7 or 8 E tanks going up and about the same coming back. We took my concentrator for

night use. So it all worked out well. They had a concentrator and 24 E tanks there for me so all went well.

Thats is about it for this min. I am soooo sleepy. I can hardly keep my eyes open. Think I just may go back to bed..

Missed all of you so much.

Love and Prayers, Peggy

IPF 2004, Florida

Worry looks around,

Sorry looks back,

Faith looks up.