Guest guest Posted August 2, 2009 Report Share Posted August 2, 2009 When I read the internet posting on IPF it was quite upsetting. Any encouragement is needed barb in South Bend barbara jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2009 Report Share Posted August 2, 2009 Barbara Jean, So glad you found us, but not so happy for your reasons for your joining the board. All of us are either going through that difficult time of finding out the worst, or we have discovered that life goes on and happy days even now are still ahead of us. Four years ago, I was where you are now. I had no idea who to turn to or where to go for the best medical treatment. I feel that I am now living so close to the day when modern medicine will have truly found viable treatments for IPF. In the meantime, I'll keep working every day to keep myself in the best possible health in anticipation of that coming day. I will also tell you that these have been the very best 4 years of my life. I am closer now to my friends and family. And "i love you," means so much more now than it ever did, and every day is precious. You will also notice as your read posts to the board that you can still have a very active life, and even still take vacations. I was where you are today, not able to see much past the next day, and I was afraid of what would come. I now walk every day and even ride a bicycle on occasion. There are those on this board who have lived up to 13 or more years after being diagnosed with IPF. I can take myself back to what you are feeling as though it were yesterday. But I can tell you that you may find the coming days and years to be the most meaningful of your life. To find these days, live each day one day at a time. Associate with happy people and take good care of yourself. We will be here for your down times and happy times. So glad you found this board, just as I recently did. Jerry/Mississippi/54/IPF dx April 05Who believes that hard times help us appreciate the good times even more. Subject: Newly diagnosed IPFTo: Breathe-Support Date: Sunday, August 2, 2009, 4:22 PM When I read the internet posting on IPF it was quite upsetting. Any encouragement is needed barb in South Bend barbara jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2009 Report Share Posted August 2, 2009 Barbara Jean, The first quote I heard from this board "glad you found us, sorry you had to".Second quote I heard"none of us comes with an expiration date stamped on our tush!"So true, so true Here you will find the most wonderful people in the world who actually understand what you are going through. I was a newbie to the board just a few short months ago and I have learned soooo much even though I have had IPF since 2002 (so there didn't die in the 3-5 neener neener neener LOL) MamaSher is our counselor, Beth our nurse, Bruce is a walking fount of information-better than Google:), Walt keeps us smiling, and those are just a few.me-my mother died of IPF in 1996 after 5 years of fighting..never heard of IPF before never thought I would need more info than I got back then..2002 went to the big house(hospital) on a Friday in late January short of breathe, put on 2 liters of o2.. on Sunday passed out on 10 liters as they wheeled me to the ICU, spent a week on a respirator (and missed the Superbowl that year, I was really anoyed about that:) and finally woke up in February! Went home on o2 and 60mgs of prednisone with a dx of Interstitial Pneumonitis. I asked all my docs, do I have IPF, am I gonna die like my mom. No no they said, pulmonary fibrosis simply means scarring of the lungs, yes you have scars but not the disease. Yeah right.After I was weaned from the o2 and the prednisone - 100 lbs later - I was stable for 5 years. But in late 2006/early 2007 I felt I was getting sob again and sure enough after a bout of pneumonia in March was sent home again with 02 and more prednisone and an official diagnosis of IPF. Used the o2 at night with my cpap but didn't feel I needed it during the day. Idiot that I am...finally got a oxymeter because my husband needed it and discovered I was walking around with saturation levels in the low 80's. Been on 02 ever since. Last January my PFT showed my diffusion rate was down to 38%, my 02 is up to 5-9 lpm and if I can lose 105 more lbs (Ive lost 25) I can then be evaluated for a lung transplant.After all that I know you are thinking OMG, but wait! I was widowed in 2008. I still work 40 hours a week as an accountant. I drive my Dodge-Fiat ha ha Truck, I take care of myself and my house and my dog. I have 3 children and 8 grandchildren that mean more to me than I can explain. I do not take one day for granted! I refuse to die before Jean Aul finishes the 6th and 7th Earth Childrens books:)-whole nother story -What I am trying to say in this crazy ramble is that I want you to have hope. Get the best doctor you can and go on with your life! God loves you and so do we.Dyane Phoenix IPF 02Madness Does Not Always Howl. Sometimes It Is The Quiet Voice at The End of The Day Saying, "Hey, Is There Room In Your Head For One More?">> When I read the internet posting on IPF it was quite upsetting. Any encouragement is needed barb in South Bend> > > barbara jean> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2009 Report Share Posted August 2, 2009 Dyanne are you talking about Clan of the Cavebear series? is she really writing more books? great books!! Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Newly diagnosed IPFTo: Breathe-Support Date: Sunday, August 2, 2009, 3:29 PM Barbara Jean, The first quote I heard from this board "glad you found us, sorry you had to".Second quote I heard"none of us comes with an expiration date stamped on our tush!"So true, so true Here you will find the most wonderful people in the world who actually understand what you are going through. I was a newbie to the board just a few short months ago and I have learned soooo much even though I have had IPF since 2002 (so there didn't die in the 3-5 neener neener neener LOL) MamaSher is our counselor, Beth our nurse, Bruce is a walking fount of information- better than Google:), Walt keeps us smiling, and those are just a few.me-my mother died of IPF in 1996 after 5 years of fighting..never heard of IPF before never thought I would need more info than I got back then..2002 went to the big house(hospital) on a Friday in late January short of breathe, put on 2 liters of o2.. on Sunday passed out on 10 liters as they wheeled me to the ICU, spent a week on a respirator (and missed the Superbowl that year, I was really anoyed about that:) and finally woke up in February! Went home on o2 and 60mgs of prednisone with a dx of Interstitial Pneumonitis. I asked all my docs, do I have IPF, am I gonna die like my mom. No no they said, pulmonary fibrosis simply means scarring of the lungs, yes you have scars but not the disease. Yeah right.After I was weaned from the o2 and the prednisone - 100 lbs later - I was stable for 5 years. But in late 2006/early 2007 I felt I was getting sob again and sure enough after a bout of pneumonia in March was sent home again with 02 and more prednisone and an official diagnosis of IPF. Used the o2 at night with my cpap but didn't feel I needed it during the day. Idiot that I am...finally got a oxymeter because my husband needed it and discovered I was walking around with saturation levels in the low 80's. Been on 02 ever since. Last January my PFT showed my diffusion rate was down to 38%, my 02 is up to 5-9 lpm and if I can lose 105 more lbs (Ive lost 25) I can then be evaluated for a lung transplant.After all that I know you are thinking OMG, but wait! I was widowed in 2008. I still work 40 hours a week as an accountant. I drive my Dodge-Fiat ha ha Truck, I take care of myself and my house and my dog. I have 3 children and 8 grandchildren that mean more to me than I can explain. I do not take one day for granted! I refuse to die before Jean Aul finishes the 6th and 7th Earth Childrens books:)-whole nother story -What I am trying to say in this crazy ramble is that I want you to have hope. Get the best doctor you can and go on with your life! God loves you and so do we.Dyane Phoenix IPF 02Madness Does Not Always Howl. Sometimes It Is The Quiet Voice at The End of The Day Saying, "Hey, Is There Room In Your Head For One More?">> When I read the internet posting on IPF it was quite upsetting. Any encouragement is needed barb in South Bend> > > barbara jean> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2009 Report Share Posted August 2, 2009 Joyce,Yes I am, do you realize that Clan of the Cave Bear came out in 1980?I get a newsletter from ECfans.com. Apparently the 6th, which I thought was the last, will be out sometime next year and she is doing research on the 7th and last (yea right) one now. Research is great but MAN she takes sooooooo loooooonnnnnggggg between them its beginning to worry me. Does heaven have a library? LOL Reading is my life ha ha. When King wasn't sure if he was gonna finish the gunslinger series I almost drove to Maine. I'll show you a number one fan.......ha haLOLDyane Phoenix IPF 02> >> > When I read the internet posting on IPF it was quite upsetting. Any encouragement is needed barb in South Bend> > > > > > barbara jean> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2009 Report Share Posted August 3, 2009 Dear Barbara Jean,I know how you feel. I think that's a common feeling when newly diagnosed. There's a lot of info out there. And, if your not feeling well and trying to digest all of it at once it is overwhelming.But know that you are not alone and that we're all in this together and pulling for one another. PJ, Ohio, 53, PF '09, Sjogren's '95 When I read the internet posting on IPF it was quite upsetting. Any encouragement is needed barb in South Bend barbara jean Quote Link to comment Share on other sites More sharing options...
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