Guest guest Posted April 11, 2008 Report Share Posted April 11, 2008 MB...ye gads! Calgon.....No, Tasmania, take me AWAY!! As I said previously, I can really get preoccupied w/these acronyms and where one begins and another leaves off. Actually, it really doesn't matter much. The way it is is the way it is. There is no doubt I (you....all of us) have a lung disease from which we will not recover, unless the medical field comes up with a miracle. I need to get back to accepting the things I cannot change. I guess I can't "hurt myself" by using O2 even if my SATS are in low 90s. Correct?? BTW...I thought that was what I had a light bulb moment with....UIP, NSIP, IPF whatever with a slash / is a form of PF. I did use "IPF" instead of "PF" but I think I have it now. Thanks for hanging in there with me. I'm sure others learned along with me. Crikey, I 'av it now! Did you get your flowers planted for out front? I think I will hang planters that will attract the hummers this year. Rich and Hannah went to her Lacrosse game and I wussed out.... 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...
Guest guest Posted April 11, 2008 Report Share Posted April 11, 2008 Sher, I'm with you...it's so easy to get caught up in the technicalities of it all and drive ourselves crazy. The reality is as you state, there's something in our lungs that's trying to kill us. All we can do is take the best care of ourselves possible and find a way to be at peace with it all. I did get some flowers planted in the tub out by the front door. Our sod was finally installed this week, though it's Bermuda grass and still dormant so it's mostly brown. It will green up with water and warmer temps coming in the next couple of weeks. I've been working hard moving the sprinkler around the yard so that all areas get water, dragging my oxygen behind me. And I wonder why I'm tired. LOL I was also with my little old lady today for a few hours, so I am looking forward to a do nothing day tomorrow. The only thing I will do is go to my nieces soccer game tomorrow at noon. Other than that I intend to be lazy! Enjoy your evening dear friend! Love, 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> > >> >> 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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