Re: transplant/antigens

[Guest guest]

Gwynne...how is Misha?

Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there!

transplant/antigens

Jim P,I was thinking of you today and wondering how youfared at the doctor. I know how beaten down and wearyand fed up this disease can make you feel, although I'venever had cancer. I'll be glad for you that your canceris in remission. Maybe tomorrow that will seem morelike one less burden for you to bear. Thank you forbeing so real with us, my friend. Prayers are with you.Jim in Alaska,What you wrote to was so eloquent...really such a spot-on description of one person'sreactions to getting this diagnosis (which isprobably mirrored by many of us). Thanks foryour honest sharing.Peggy,WELL, miss famous person, I'm so proud of youfor doing the interview today. It's such an importantway to help, and something that is do-able. You didremember to take the toilet paper off your head, right?I'm glad was there for you. :-DBruce,WELCOME HOME! It's good to hear everything went well.I think it's possible we need to have another lunch todiscuss the particulars before you go traipsing off onany other trips!Joyce,I'm hoping that the new bed will make all the difference,and that you are having a restful night's sleep. Heavenonly knows how much you deserve it. Lou,I've been on Prednisone for 2 years, but I don'ttake Bactrim (although I've heard of it, maybe haveeven taken it before sometime or other). I do takeAzithromycin on M-W-F, though.GOOD move wearing the masks!!!! You can't be too carefulwith something that scary in the house. Hope yourhubby feels better soon!Ken,What GREAT NEWS about your PFTs! I'm so hopefulthat the concensus on Pirfenidone in 2009 will beas promising as your case seems to demonstrate.I'm excited for you!!!! Yeay!!! Thank you so muchfor participating in the trial and for sharing the news.It gives us hope.,Yes, everything is experimental for IPF. Wish wecould tell you there's something that has been provento be effective in halting progression, at least. Hangin there. You'll learn a lot more about how to livewith this brute of a disease.,I never heard of anyone going from continuous topulse vs. the other way around. Surely you shoulduse continuous for sure when you're exercising orexerting yourself.Is your Carlsbad weather as perfect as it usually is?I love it there so much!!! I'd visit you in a heartbeatif I could! I can almost hear the surf....Babs,YOU are a genuine inspiration. I wish Driftwood werecloser to Fort Worth so we could hang out together.I think we could have a blast!Tina,I'm glad your CT and PFTs were basically the same. I hopeyou'll go for getting listed anyway! What do you have tolose? My antigen count is 44% (used to be 73% twoyears ago), and I've been waiting for a transplantsince March. My doctor assures me that at my centerI would have been transplanted by now if it weren't formy antigens, even with my B-Pos blood. (I'm at the top ofthe list for B-Positives.)But IPF will kill me some day, unless something else getsme first. I'd really love to live long enough to see my firstgrandchildren, to hear and play more music, enjoy andcreate more art, spend time with friends and family, seegreat movies, eat good food (sometimes), cuddle more withmy sweet Misha, and travel to more wonderful places. SinceI am blessed to be a transplant candidate at age 56, it's freefor me to hope that I WILL still do those things one day,however unlikely, with one or two new lungs, and withoutoxygen. Even though that will involve doing a cross-match,therefore limiting my donor pool and extending my wait, Ichoose to have hope. Much of how we do in dealing withthis disease is a choice, I'm certain.I love this life, even with my bouts of depression and thefear and anxiety that come with IPF and waiting for "thecall". I have joy and humor in my life. I fully understandthat everything happens in God's time, but my prayer isthat he still has plans for me in this life. If that isn't to be,I'll accept it (part of me already has), but in the meantimeI absolutely won't give up without a fight.Hugs and blessings,Gwynne IPF 7/04 listed for transplant 3/07 Texas