Guest guest Posted September 19, 2007 Report Share Posted September 19, 2007 Hello.. My name is Ann and I was diagnosed with pulmonary fibrosis 5-6 years ago. Had to give up golf a year and a half ago. Now it keeps getting worse to the point I cannot even go shopping. I am on oxygen 24/7. Moving from one room to another, my oxygen level goes down into the 70's. Then it takes a while to get my breath back into the 90's then just have to sit still. I am VERY depressed. I used to be so active and now am mostly homebound. I play computer games, read, watch TV.... that's about it. I was just recently put on a low dose... 5 mg. of Prednisone. Don't feel any difference except maybe it's helped me to stay a bit calmer. I would appreciate hearing from someone who is going through what I am experiencing. Sure is scary when you think you can't get another breath! Sincerely, Ann Alfie369@... -------------- Original message from Leanne Storch : -------------- Thanks, Richie.....you're right, it s*cks.......I hate this disease....thanks for your PMA, it is very much appreciated. Hope today is a good one. LeanneRichie <typokiing> wrote: Hey Leanne - I'd be doing great to simply be able tomake the bed! lol! I just wnat to say that you don'tneed to apologize because you breathe better thanothers. You have breathing problems and when you cantbreathe you just can't breathe! Doesn't matter if thestat is 88, 92, or 52 - it still s*cks!Keep on bed making!RRRichie in Memphis dx w/cancer in right lung 2002, ARDS followed by PF inthe left one 2006.May the words of my mouth and the meditations of my heart be ever pleasing to Thee, O L-RD, my Rock, and my Redeemer. Psalms 19:14__________________________________________________________Shape Yahoo! in your own image. Join our Network Research Panel today! http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7 Shape Yahoo! in your own image. Join our Network Research Panel today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2007 Report Share Posted September 19, 2007 Hey Ann, Welcome to our board. I was diagnosed 10 years ago and have had long periods of being stable. Right now, I am exactly where you are and I am not dealing with it well. Yes, it is scary and it hurts. This is the first time I ever had pain with the falling 02. It goes down so fast and I, too sit and wait for the numbers to come back up. Sometimes, when I realize they are so low....today 63....I sit down and the numbers go lower. Then they begin to climb. What liter flow are you on now. I hate sitting here looking at my dirty house. I really hate being stuck here. I am going to rehab twice a week....nothing strenuous....just to keep moving. I was not able to go Tuesday and am debating about tomorrow. I get on the computer, listen to music, watch a little t.v., read and do crosswords. My butt gets numb from sitting. (tmi) I am so glad that you are here, Ann. We moan and complain, but we have hope and a sense of humor. We need you as much as you need us. Together we can be stronger. This is also a great place to learn. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. > Hey Leanne - I'd be doing great to simply be able to> make the bed! lol! I just wnat to say that you don't> need to apologize because you breathe better than> others. You have breathing problems and when you cant> breathe you just can't breathe! Doesn't matter if the> stat is 88, 92, or 52 - it still s*cks!> > Keep on bed making!> > RR> > Richie in Memphis > > dx w/cancer in right lung 2002, ARDS followed by PF in> the left one 2006.> > May the words of my mouth and the meditations of my heart be ever pleasing to Thee, O L-RD, my Rock, and my Redeemer. Psalms 19:14> > __________________________________________________________> Shape Yahoo! in your own image. Join our Network Research Panel today! http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7 > > > > > > > Shape Yahoo! in your own image. Join our Network Research Panel today!> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Hi Richie Where is the ARDS website? I saw it once a while back and now I can't find it. Hope you're doing well! Thanks Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
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