Ms. Gwynne

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Gwynne, I love you girl. Wish I could make those blues go away for you. Please know that you are cared for and thought of daily. You must be exhausted after those pfts. Glad you enjoyed "Now is the time". I so often feel like I'm just treading water and just not going anywhere and my life is yet to be lived. Shoot. I'm living it. I might as well give it my best shot ever! Whatever that is day by day. moment by moment. Inch by inch..... Love from balmy Chi-town (we're in the 30's) LeanneGwynne Keyland wrote: My PFTs were today, but no DLCO (my last was 26%).My FEV 1 was 1.56 out of a Predicted 3.06. I walked ameasly 646 feet on my 6 minute walk (worst ever), mysats dropped to 82%, and I finished at 10 liters but couldhave used more.My doc took me off the CellCept after 2 years, as we'veALL decided it isn't working. The kicker is that (I canalmost hear the moans and groans) he actually wantsto increase my Prednisone from 10 to 40 mg. for twoweeks. He's not insistent, because he knows I havetoo many reservations. Truth is, I haven't decided aboutthis yet, although I probably won't do it. Tack on 30 moremg to current depression? Probably isn't a great idea.They finally did get my chart information to San ,and I have an appointment there Feb. 1. All they're goingto require of me is an x-ray, blood work, social

workerconsult, and to meet the doctors, thank goodness.Judy,You are warmly welcomed to this group of caring andknowledgeable people. I'm sorry you also have IPF(me too) - when were you diagnosed? I was also beingmistreated for asthma. Thank you for the informationabout yourself. Know that you're not alone.FYI,we have another Judy who was transplanted recently.Leanne,Amen to "Now Is The Time". It says it perfectly. Thank you,I'll keep this one.Todd,Great photos of the Tetons!! I'm a mountain girl at heart.You have a lovely family. I'll bet that trip was a good one.Your headaches could also be cluster headaches...just athought. I got a headache immediately today upon doingmy PFTs. Blow, blow, blow usually means a headache forme, as can coughing (especially in the temples).Nausea that improves with eating is sometimes a sign ofan ulcer.I agree that your symptoms sound much

like IPF. But itdoes seem premature to recommend transplant evenbefore testing your lung volumes or having a biopsy.Transplant evaluation is about a 6-day process thatincludes a LOT of tests: CTs, MRIs, heart cath, and manymore. Bruce answered your question about VATS. That'swhat I had, and I was in the hospital 2 nights and 3 days.I HAD to know, although I didn't fully realize how muchof a non-answer IPF is - i.e., all the lack of concrete answers,lack of knowledge about the causes or disease process,lack of treatment, etc.,I adore your post about this site. You have never even comeclose to offending me, and I can't see it ever happening.Big hugs to you when you're scilly or serious - I'll take youeither way... in fact I need you both ways!You don't mention the Russians - do you like Rachmaninoff?I DO. Your page-turning experience is thrilling. I have aRussian cousin-by-marriage who competed

in our prestigiousVan Cliburn International Piano Competition here in FortWorth, and then went on to win the Leeds in London. Cool,huh? I could listen to him play for days on end!!! Ilya Itinis his name.Sher,Awwwwww- the photos of you and Rosebud areabsolutely heart-warming. I'm glad she gives youso much comfort. I have to admit my daughter gave mea stuffed dog that looks very much like my Misha, whichI set on my bed the 3 nights that she was in the hospital.It actually helped a tiny bit to give it an occasional squeeze.Misha's going back for a re-check in a week - we've ruledout some bad things, but we don't have the full story yet.At least she's doing better.Joyce,Terrific SERMON #!. I'd hate the hospital bed too, butprobably not for long if it led to better, more restfulsleep (yeah, I know, another one of those "acceptanceplateaus" that we experience). That's what I'm hopinghappens

right away for you. I don't want you to have tochange docs, but if you have to consult with the new MD,at least he comes highly qualified. You'll be the perfectjudge of if he's also a good healer and compassionateperson.You surely have a lot of beautiful grandchildren! Thanks forthe photos of YOU and Lucian especially. Yeay, jammies!Peggy,Wonderful story. I do try to live my life in seasons insteadof by years. It was good advice from my sweet pulmonologist.Still depressed here. Ridin' it out as best I can.Hugs and blessings,Gwynne IPF 7/04 listed for transplant 3/07 Texas

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