Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Well, sounds like another person I need to meet if I make my trip to North Carolina. I really must put together a stick pin map. Was trying to find one online or electronic in some way. We have people everywhere. > > > > > > > > > > Hi Ann, > > > > > I'm happy to welcome you hear but as everyone says, I'm sorry > > you > > > > have reason to seek this group out. You don't say specifically > > how > > > > your doctor made this diagnosis was it based on a chest x- ray, > a > > ct > > > > scan, a pulmonary function test? I would think it is doubtful > > that > > > > your doctor could be mistaking surgical scarring in the breast > > > tissue > > > > for fibrosis (lung scarring) in the lower portion of both > lungs. > > > > However anything is possible so I would ask that question of > your > > > > doctor asap. > > > > > Did he tell you anything else other than IPF? Has he > mentioned > > > any > > > > further testing or a referral to a specialist? If you're > > someplace > > > > where you have access to a teaching hospital, I'd suggest > > starting > > > > there. > > > > > Good luck and please keep in touch with us. We've all been > down > > > > this road and there is no greater support than this board! > > > > > > > > > > Beth in NC age 48 Fibrotic NSIP 06/06 > > > > > > > > > > " For as long as I shall live, I will testify to Love. " > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > New Member question > > > > > > > > > > Hi everyone. I am new to the group and my name is Ann. I > am > > > > still > > > > > in a state of shock from the diagnosis last Wednesday and > > perhaps > > > a > > > > > little in denial. Yet, I would like to draw on your > significant > > > > > knowledge of Idiopathic Pulmonary Fibrosis to try to get an > > > answer > > > > to a > > > > > question I have. > > > > > > > > > > I do not have some of the symptoms that I have read on the > > > > internet, > > > > > but the doctor said I had some scarring at the bottom of each > > > lung. > > > > He > > > > > asked if I'd had pneumonia other than when I was a child and > I > > > said > > > > not > > > > > to my knowledge. Since I came home I remembered that I had > > breast > > > > > surgery some years ago (10-12) and I am wondering if the > > scarring > > > > from > > > > > that would be showing up on the images. I know this is > > something > > > > that > > > > > you may not be qualified to answer, but since the scars from > > that > > > > > surgery are very close to what I perceive as the lower > portion > > of > > > > my > > > > > lungs, it seemed possible to me. I haven't gone for my second > > > > opinion > > > > > yet, but of course I will do that too. Your responses will be > > > > greatly > > > > > appreciated. Thanks. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Frapper has a map such as you are describing. www.frapper.com http://www.frappr.com/?a=myfrappr If it won't let you in to see the map, I can give you the password or something. We used it during the campaign. It has a little stick pin (blue for men and pink for women) that shows the town and you can even add a pop-up photo if you want. BTW, I have become suddenly paranoid about going shopping lest I pick up a virus or something. Is that normal and how do you handle it. You can't just stay in the house all the time, can you? Ann,65,ipf 01-08 NC > > > > > > > > > > > > Hi Ann, > > > > > > I'm happy to welcome you hear but as everyone says, I'm > sorry > > > you > > > > > have reason to seek this group out. You don't say > specifically > > > how > > > > > your doctor made this diagnosis was it based on a chest x- > ray, > > a > > > ct > > > > > scan, a pulmonary function test? I would think it is doubtful > > > that > > > > > your doctor could be mistaking surgical scarring in the > breast > > > > tissue > > > > > for fibrosis (lung scarring) in the lower portion of both > > lungs. > > > > > However anything is possible so I would ask that question of > > your > > > > > doctor asap. > > > > > > Did he tell you anything else other than IPF? Has he > > mentioned > > > > any > > > > > further testing or a referral to a specialist? If you're > > > someplace > > > > > where you have access to a teaching hospital, I'd suggest > > > starting > > > > > there. > > > > > > Good luck and please keep in touch with us. We've all been > > down > > > > > this road and there is no greater support than this board! > > > > > > > > > > > > Beth in NC age 48 Fibrotic NSIP 06/06 > > > > > > > > > > > > " For as long as I shall live, I will testify to Love. " > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > New Member question > > > > > > > > > > > > Hi everyone. I am new to the group and my name is Ann. > I > > am > > > > > still > > > > > > in a state of shock from the diagnosis last Wednesday and > > > perhaps > > > > a > > > > > > little in denial. Yet, I would like to draw on your > > significant > > > > > > knowledge of Idiopathic Pulmonary Fibrosis to try to get an > > > > answer > > > > > to a > > > > > > question I have. > > > > > > > > > > > > I do not have some of the symptoms that I have read on the > > > > > internet, > > > > > > but the doctor said I had some scarring at the bottom of > each > > > > lung. > > > > > He > > > > > > asked if I'd had pneumonia other than when I was a child > and > > I > > > > said > > > > > not > > > > > > to my knowledge. Since I came home I remembered that I had > > > breast > > > > > > surgery some years ago (10-12) and I am wondering if the > > > scarring > > > > > from > > > > > > that would be showing up on the images. I know this is > > > something > > > > > that > > > > > > you may not be qualified to answer, but since the scars > from > > > that > > > > > > surgery are very close to what I perceive as the lower > > portion > > > of > > > > > my > > > > > > lungs, it seemed possible to me. I haven't gone for my > second > > > > > opinion > > > > > > yet, but of course I will do that too. Your responses will > be > > > > > greatly > > > > > > appreciated. Thanks. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Beth....I find myself feeling the same exact way (with the germs, etc.) I may have just found out about my PF diagnosis, however, I haven't been able to breathe now for 5 months and to get a cold....well, that would just be tragic to my system! I've had asthma all my life and when I get colds, they just about kill me anyway (usually get bronchitis, if not pneumonia), so I figure if I get a cold NOW, I will definitely end up in the hospital on oxygen! However, not getting a cold is easier said than done, with 2 kids in school bringing home every virus imaginable! LOL! Dawn > > > > > > > > > > > > > > Hi Ann, > > > > > > > I'm happy to welcome you hear but as everyone says, I'm > > sorry > > > > you > > > > > > have reason to seek this group out. You don't say > > specifically > > > > how > > > > > > your doctor made this diagnosis was it based on a chest x- > > ray, > > > a > > > > ct > > > > > > scan, a pulmonary function test? I would think it is > doubtful > > > > that > > > > > > your doctor could be mistaking surgical scarring in the > > breast > > > > > tissue > > > > > > for fibrosis (lung scarring) in the lower portion of both > > > lungs. > > > > > > However anything is possible so I would ask that question > of > > > your > > > > > > doctor asap. > > > > > > > Did he tell you anything else other than IPF? Has he > > > mentioned > > > > > any > > > > > > further testing or a referral to a specialist? If you're > > > > someplace > > > > > > where you have access to a teaching hospital, I'd suggest > > > > starting > > > > > > there. > > > > > > > Good luck and please keep in touch with us. We've all > been > > > down > > > > > > this road and there is no greater support than this board! > > > > > > > > > > > > > > Beth in NC age 48 Fibrotic NSIP 06/06 > > > > > > > > > > > > > > " For as long as I shall live, I will testify to Love. " > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > New Member question > > > > > > > > > > > > > > Hi everyone. I am new to the group and my name is > Ann. > > I > > > am > > > > > > still > > > > > > > in a state of shock from the diagnosis last Wednesday and > > > > perhaps > > > > > a > > > > > > > little in denial. Yet, I would like to draw on your > > > significant > > > > > > > knowledge of Idiopathic Pulmonary Fibrosis to try to get > an > > > > > answer > > > > > > to a > > > > > > > question I have. > > > > > > > > > > > > > > I do not have some of the symptoms that I have read on > the > > > > > > internet, > > > > > > > but the doctor said I had some scarring at the bottom of > > each > > > > > lung. > > > > > > He > > > > > > > asked if I'd had pneumonia other than when I was a child > > and > > > I > > > > > said > > > > > > not > > > > > > > to my knowledge. Since I came home I remembered that I > had > > > > breast > > > > > > > surgery some years ago (10-12) and I am wondering if the > > > > scarring > > > > > > from > > > > > > > that would be showing up on the images. I know this is > > > > something > > > > > > that > > > > > > > you may not be qualified to answer, but since the scars > > from > > > > that > > > > > > > surgery are very close to what I perceive as the lower > > > portion > > > > of > > > > > > my > > > > > > > lungs, it seemed possible to me. I haven't gone for my > > second > > > > > > opinion > > > > > > > yet, but of course I will do that too. Your responses > will > > be > > > > > > greatly > > > > > > > appreciated. Thanks. > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Thank you....going to look there. Paranoia no....but care, yes. I get out and around....avoid sick people like the plague though. But one has to live as much as they can with just controlling the risks. > > > > > > > > > > > > > > Hi Ann, > > > > > > > I'm happy to welcome you hear but as everyone says, I'm > > sorry > > > > you > > > > > > have reason to seek this group out. You don't say > > specifically > > > > how > > > > > > your doctor made this diagnosis was it based on a chest x- > > ray, > > > a > > > > ct > > > > > > scan, a pulmonary function test? I would think it is > doubtful > > > > that > > > > > > your doctor could be mistaking surgical scarring in the > > breast > > > > > tissue > > > > > > for fibrosis (lung scarring) in the lower portion of both > > > lungs. > > > > > > However anything is possible so I would ask that question > of > > > your > > > > > > doctor asap. > > > > > > > Did he tell you anything else other than IPF? Has he > > > mentioned > > > > > any > > > > > > further testing or a referral to a specialist? If you're > > > > someplace > > > > > > where you have access to a teaching hospital, I'd suggest > > > > starting > > > > > > there. > > > > > > > Good luck and please keep in touch with us. We've all > been > > > down > > > > > > this road and there is no greater support than this board! > > > > > > > > > > > > > > Beth in NC age 48 Fibrotic NSIP 06/06 > > > > > > > > > > > > > > " For as long as I shall live, I will testify to Love. " > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > New Member question > > > > > > > > > > > > > > Hi everyone. I am new to the group and my name is > Ann. > > I > > > am > > > > > > still > > > > > > > in a state of shock from the diagnosis last Wednesday and > > > > perhaps > > > > > a > > > > > > > little in denial. Yet, I would like to draw on your > > > significant > > > > > > > knowledge of Idiopathic Pulmonary Fibrosis to try to get > an > > > > > answer > > > > > > to a > > > > > > > question I have. > > > > > > > > > > > > > > I do not have some of the symptoms that I have read on > the > > > > > > internet, > > > > > > > but the doctor said I had some scarring at the bottom of > > each > > > > > lung. > > > > > > He > > > > > > > asked if I'd had pneumonia other than when I was a child > > and > > > I > > > > > said > > > > > > not > > > > > > > to my knowledge. Since I came home I remembered that I > had > > > > breast > > > > > > > surgery some years ago (10-12) and I am wondering if the > > > > scarring > > > > > > from > > > > > > > that would be showing up on the images. I know this is > > > > something > > > > > > that > > > > > > > you may not be qualified to answer, but since the scars > > from > > > > that > > > > > > > surgery are very close to what I perceive as the lower > > > portion > > > > of > > > > > > my > > > > > > > lungs, it seemed possible to me. I haven't gone for my > > second > > > > > > opinion > > > > > > > yet, but of course I will do that too. Your responses > will > > be > > > > > > greatly > > > > > > > appreciated. Thanks. > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Ann, That's quite normal but you're right, being housebound is to be avoided until you no longer have am option. My good friend who is a senior Infection Control Nurse responsible for many Hospitals across our regions told me that paper Masks are useless in the Public Domain. She advised me to buy some high grade cotton hankerchiefs & keep them handy at ALL times...use them to quickly cover your nose & mouth when you're aware of someone passing by that is coughing or sneezing. They are really great for plane travel as well. She said it's a myth that AIr Conditioning Units on planes cause bugs to infect people. Apparently Air Con on planes (at least in Oz) are extremely well maintained & are designed to filter out air-borne bugs. The danger comes from people passing by in the aisles & floating bugged droplets downwards towards the unsuspecting person sitting in the seats downwind of the passing person. My young grandchildren are the ones most likely to pass on infection to me & they're so swet about it. They're very careful when they have a cold & refuse to sit on my lap or kiss me! That's what I find the hardest! It's a fast learning curve that's for sure! Regards, in Oz > > > > > > >> > > > > > > Hi Ann,> > > > > > > I'm happy to welcome you hear but as everyone says, I'm > > sorry > > > > you > > > > > > have reason to seek this group out. You don't say > > specifically > > > > how > > > > > > your doctor made this diagnosis was it based on a chest x-> > ray, > > > a > > > > ct > > > > > > scan, a pulmonary function test? I would think it is > doubtful > > > > that > > > > > > your doctor could be mistaking surgical scarring in the > > breast > > > > > tissue > > > > > > for fibrosis (lung scarring) in the lower portion of both > > > lungs. > > > > > > However anything is possible so I would ask that question > of > > > your > > > > > > doctor asap. > > > > > > > Did he tell you anything else other than IPF? Has he > > > mentioned > > > > > any > > > > > > further testing or a referral to a specialist? If you're > > > > someplace > > > > > > where you have access to a teaching hospital, I'd suggest > > > > starting > > > > > > there. > > > > > > > Good luck and please keep in touch with us. We've all > been > > > down > > > > > > this road and there is no greater support than this board!> > > > > > > > > > > > > > Beth in NC age 48 Fibrotic NSIP 06/06> > > > > > > > > > > > > > "For as long as I shall live, I will testify to Love."> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > New Member question> > > > > > > > > > > > > > Hi everyone. I am new to the group and my name is > Ann. > > I > > > am > > > > > > still > > > > > > > in a state of shock from the diagnosis last Wednesday and > > > > perhaps > > > > > a > > > > > > > little in denial. Yet, I would like to draw on your > > > significant > > > > > > > knowledge of Idiopathic Pulmonary Fibrosis to try to get > an > > > > > answer > > > > > > to a > > > > > > > question I have.> > > > > > > > > > > > > > I do not have some of the symptoms that I have read on > the > > > > > > internet, > > > > > > > but the doctor said I had some scarring at the bottom of > > each > > > > > lung. > > > > > > He > > > > > > > asked if I'd had pneumonia other than when I was a child > > and > > > I > > > > > said > > > > > > not > > > > > > > to my knowledge. Since I came home I remembered that I > had > > > > breast > > > > > > > surgery some years ago (10-12) and I am wondering if the > > > > scarring > > > > > > from > > > > > > > that would be showing up on the images. I know this is > > > > something > > > > > > that > > > > > > > you may not be qualified to answer, but since the scars > > from > > > > that > > > > > > > surgery are very close to what I perceive as the lower > > > portion > > > > of > > > > > > my > > > > > > > lungs, it seemed possible to me. I haven't gone for my > > second > > > > > > opinion > > > > > > > yet, but of course I will do that too. Your responses > will > > be > > > > > > greatly > > > > > > > appreciated. Thanks.> > > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
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