Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 Peggy...I do deep breathing on my CPAP too. Obviously, I didn't pay attention after a RT told me PF pt doesn't benefit from it............thanks. Bruce...I'm learning something useful here. Thanks so much. I do know I breathe very shallow, not thinking about breathing. When I realize it, I take a few deep breaths. (Something good here for newbies too). .....I just tried what you said/oximeter....sats went up one but heart beat came up 4. Heart beat has been very low and skipping beats. Surely I will hear the results of the Echo tomorrow!! grrrr. "That breathing" is a bit hard to do....surprised me... .......Do you have any word about Gwynnie?????? Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! 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> > >> >> CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi ____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
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