Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 Gwynne Your PFT's remind me how dangerous any one indicator can be. I'm early and mine is so mild today compared to yours but yet my FEV1 is actually worse. I still say the mouthpiece was too big for me. lol. If you do the Prednisone please make sure someone who will see you regularly is aware so they'll recognize signs that it is causing too much depression. Wouldn't a try of a smaller increase like to 20 make more sense. I know he's trying to hit hard, but it just seems to me high side effect drugs should be increased gradually, not quadrupled. So glad they aren't putting you through the ringer in San . Thank goodness they actually will trust that the doctors at UTSW knew how to run tests. > > > 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 a > measly 646 feet on my 6 minute walk (worst ever), my > sats dropped to 82%, and I finished at 10 liters but could > have used more. > My doc took me off the CellCept after 2 years, as we've > ALL decided it isn't working. The kicker is that (I can > almost hear the moans and groans) he actually wants > to increase my Prednisone from 10 to 40 mg. for two > weeks. He's not insistent, because he knows I have > too many reservations. Truth is, I haven't decided about > this yet, although I probably won't do it. Tack on 30 more > mg 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 going > to require of me is an x-ray, blood work, social worker > consult, and to meet the doctors, thank goodness. > > Judy, > You are warmly welcomed to this group of caring and > knowledgeable people. I'm sorry you also have IPF > (me too) - when were you diagnosed? I was also being > mistreated for asthma. Thank you for the information > about 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 a > thought. I got a headache immediately today upon doing > my PFTs. Blow, blow, blow usually means a headache for > me, as can coughing (especially in the temples). > Nausea that improves with eating is sometimes a sign of > an ulcer. > I agree that your symptoms sound much like IPF. But it > does seem premature to recommend transplant even > before testing your lung volumes or having a biopsy. > Transplant evaluation is about a 6-day process that > includes a LOT of tests: CTs, MRIs, heart cath, and many > more. Bruce answered your question about VATS. That's > what I had, and I was in the hospital 2 nights and 3 days. > I HAD to know, although I didn't fully realize how much > of 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 come > close to offending me, and I can't see it ever happening. > Big hugs to you when you're scilly or serious - I'll take you > either 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 a > Russian cousin-by-marriage who competed in our prestigious > Van Cliburn International Piano Competition here in Fort > Worth, and then went on to win the Leeds in London. Cool, > huh? I could listen to him play for days on end!!! Ilya Itin > is his name. > > Sher, > Awwwwww- the photos of you and Rosebud are > absolutely heart-warming. I'm glad she gives you > so much comfort. I have to admit my daughter gave me > a stuffed dog that looks very much like my Misha, which > I 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 ruled > out 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, but > probably not for long if it led to better, more restful > sleep (yeah, I know, another one of those " acceptance > plateaus " that we experience). That's what I'm hoping > happens right away for you. I don't want you to have to > change docs, but if you have to consult with the new MD, > at least he comes highly qualified. You'll be the perfect > judge of if he's also a good healer and compassionate > person. > You surely have a lot of beautiful grandchildren! Thanks for > the photos of YOU and Lucian especially. Yeay, jammies! > > Peggy, > Wonderful story. I do try to live my life in seasons instead > of 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 > Quote Link to comment Share on other sites More sharing options...
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