-Speed bump

[Guest guest]

,

I actually think it's funny as heck but when my sister first said it...("Without your oxygen you'd turn into a speed bump") it just slipped out of her mouth (we're all smart aleks), there was a horrified silence in the room and then she and I looked at each other and got completely hysterical laughing. To the point where I ended up coughing my head off and had to turn my oxygen up but it was worth it. I was newly diagnosed at the time probably only home from the hospital a couple of weeks but Amy says that's when she knew I was in it for the long haul, that I hadn't lost my sense of humor and was going to fight.

I thank God for my siblings who don't treat me as though I'm made out of fine crystal now. I'm still me, still a smart ass (scuse me folks) and intend to hang around for awhile yet. As Peggy says, there is no expiration date tatooed on my bum so I'll just keep breathing in and out!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Re: Sher-NSIP

, I read that you are confused about what type of IPF you have--IPF, NSIP, etc. plus honeycombing. I had the same issue. For about 4 years, mine was diagnosed NSIP. then I took my biopsy slides to a major ILD center (this year) and then I was diagnosed UIP(honeycombing) IPF. My doctor told me that there have been newer advances for the pathlogist in reading the biopsy slides. I am going to try and qualify for the STEP Trial in two weeks and the nurse mentioned to me that my biopsy slides would have to be looked at AGAIN for other characteristics that have been determined by the Trial. Whew! I know it is confusing. Maybe different parts of our lungs can have different kinds of pulmonary fibrosis! (This statement came from me!) Toodles! Jane UIP/IPF formerly NSIP 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > >> > > Sher,> > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > is definitely preferable to IPF, the life expectancy is much longer> > and as a bonus, it does not always progress. As a matter of fact,> > Dr. on at Duke just told me last month that he's seen patients> > with NSIP who have been "stable for decades." I mean I know that my> > experience may be different

but anything that gives us hope is> > helpful!> > > Have they switched your dx based on the behavior of the disease or> > also on the ct scan results? NSIP is usually very identifiable by CT> > scan. To identify the type of NSIP (fibrotic, cellular or mixed) you> > would need a biopsy. But at this point it probably doesn't matter as> > long as your stable. I understand why you wouldn't put yourself> > through that. I don't regret my biopsy but I totally get why you've> > chosen not to go down that road.> > > In the meantime, celebrate stability!! Stable is my happy word!!> > > Beth> > > Age 48 Fibrotic NSIP 06/06> > >> > > Change everything. Love and Forgive> > >> >>

____________ _________ _________ _________ _________ __