Guest guest Posted February 2, 2008 Report Share Posted February 2, 2008 Hi Ann, Welcome to the group. I am fairly new to the group, as well, and you have definitely come to the right place to get information. If you have any doubts as to the diagnosis, I would suggest definitely go for a second opinion and tell them exactly what you just wrote. Wish you all the best of luck and if you need an ear, I am here. Caroonecarolinagirl wrote: 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.CaroAsthma 1976,Osteoarthritis 2002, COPD 02/06, IPF 08/06, UIP 01/08Mississippi Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2008 Report Share Posted February 2, 2008 Thanks. I appreciate that. > 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. > > > > > > > Caro > Asthma 1976,Osteoarthritis 2002, COPD 02/06, IPF 08/06, UIP 01/08 > Mississippi > > --------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2008 Report Share Posted February 2, 2008 Hello and Welcome Ann Firstly the only thing typical about PF is that no one is typical. We all have different, sometimes even opposite, symptoms. Also, I'm sorry to say that unless your doc was particularly bad at his job he wouldn't confuse scar tissue in your lungs (under your ribcage) with scar tissue due to breast surgery (above your ribcage) It's always worth getting a second opinion if you can anyway. We are here, we will listen and we do 'get it'. Love Ze xx (38) Dermatomyositis '94 Pulmonary Fibrosis, '98 etc, > 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.> > > > > > > Caro> Asthma 1976,Osteoarthritis 2002, COPD 02/06, IPF 08/06, UIP 01/08> Mississippi> > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2008 Report Share Posted February 2, 2008 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 2, 2008 Report Share Posted February 2, 2008 Hi Ann... I've been popping in and out checking on one of our members (Joyce) who is very ill and currently in the hospital. I see your post and want to welcome you. We have about 500 members now and it is sad when another joins in although we are glad to be here for each other. Between most of us we do have significant knowledge of IPF. I was dx (diagnosed) 3-06 and have been fairly stable since. I as well, do not have many of the symptoms and I am currently not on O2. You will find us in all stages of IPF and the majority with other chronic health problems as well. By all means, seek a second opinion before making any decisions as to Tx (treatment). I was shocked too when I was Dx. I found out it is a fatal lung disease online! Where do you live? Are you married? Your age? Tell us a little about yourself. It's helpful to list behind your name, your disease, date Dx. and state...age if you choose. Stay close to the board, there are answers here for you. I'm on and off for the next few days. God bless you Ann Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! 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 2, 2008 Report Share Posted February 2, 2008 Its great and horrible to have you here. We welcome you with open arms but wish no one had to visit. Nothin' could be finer than to be in Carolina in the Mornin'....oh sorry, got distracted, but we do have some members in the Carolinas and I am originally from there. Now, we all found out about our diseases and were shocked. As to PF most of us had never heard of it. You come away at first so confused. The key now is to comprehend what you do know but to play for your next doctor visit with lots and lots of questions, prepared, written and don't stop until they are covered. Were you seen by your primary or a pulmonologist? If not a pulmonologist, it sounds like its time, regardless. What about a six minute walk to check your oxygen levels with an oximeter? We'll ask questions you can't answer only so you'll seek the answers. Some scarring on the bottom of the lungs could be so many things. Was that from a CT? If so it should be more definitive. So, it will take some time to figure out what you have. Don't assume the worst, but do get attention. You will have to manage your medical care. Thats something you'll learn. To ask, insist, get copies of results. Have them to review at home. Did you have PFT's (Pulmonary Function Tests). You'll be overwhelmed by all the different things you read here too. But just know you can express or ask anything and right now our primary function may well be to just prepare you for your next doctor visit and to gather knowledge there. We're all different. We have different forms of Pulmonary Fibrosis and other diseases. We deal with it differently. There are no absolutes in the answers. It's all about learning and making the decisions right for you. But first, just learn what you can here and from your doctors. > > 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 2, 2008 Report Share Posted February 2, 2008 Sher I know you're just bouncing in and out a bit right now, but wanted to let you know that I and all my bears are thinking of you. It's good sometimes to alter our routine a bit. I've been out most of today, our first day of nice weather, and will be tomorrow too. Rosebud: Give Sher a huge hug please. > > Hi Ann... I've been popping in and out checking on one of our members (Joyce) who is very ill and currently in the hospital. > I see your post and want to welcome you. We have about 500 members now and it is sad when another joins in although we are glad to be here for each other. Between most of us we do have significant knowledge of IPF. > I was dx (diagnosed) 3-06 and have been fairly stable since. I as well, do not have many of the symptoms and I am currently not on O2. > You will find us in all stages of IPF and the majority with other chronic health problems as well. > By all means, seek a second opinion before making any decisions as to Tx (treatment). > I was shocked too when I was Dx. I found out it is a fatal lung disease online! > Where do you live? Are you married? Your age? Tell us a little about yourself. > It's helpful to list behind your name, your disease, date Dx. and state...age if you choose. > Stay close to the board, there are answers here for you. > I'm on and off for the next few days. > God bless you Ann > Mama-Sher, 69; IPF, 3-06, OR. > Don't fret about tomorrow, God is already there! > 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 2, 2008 Report Share Posted February 2, 2008 Yes, I had the CT angio high resolution,treadmill stress echo,Stress echo,lung volumes,etc. He mentioned a couple of times that that he believed it was just in the beginning stages and we had caught it very early. The oxygen level was in the 80-something percent which he said was about average for my age. I have had my cough for years and consider it a sinus cough since I have a terrible sinus condition. I am not tired and haven't lost weight. In fact until last week I was going 24/7 in the campaign and traveling all over many states to video his speeches. I'm sure everyone says the same thing, but this just doesn't add up IMO and I do hope I'm right. > > 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 2, 2008 Report Share Posted February 2, 2008 I forgot to add that I am going on the 19th for a second opinion and he also wants me to do the lung biopsy but that sounds so dangerous. I will be 66 years old in three weeks and most of what I read says people normally have IPF before that age too. He didn't mention my having anything else. He is a specialist, but he is referring me for a second opinion and to get further info on the lung biopsy. > > 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 2, 2008 Report Share Posted February 2, 2008 Hi Mama-Sher Thanks to you and everyone for your warm welcome under such difficult circumstances. I live in NC. I am married and will be 66 in 3 weeks. If I am sort of rambling right now, please forgive. I'm sure you all know what I am going through right now. Ann, 65; IPF 01-08, NC. > > Hi Ann... I've been popping in and out checking on one of our members (Joyce) who is very ill and currently in the hospital. > I see your post and want to welcome you. We have about 500 members now and it is sad when another joins in although we are glad to be here for each other. Between most of us we do have significant knowledge of IPF. > I was dx (diagnosed) 3-06 and have been fairly stable since. I as well, do not have many of the symptoms and I am currently not on O2. > You will find us in all stages of IPF and the majority with other chronic health problems as well. > By all means, seek a second opinion before making any decisions as to Tx (treatment). > I was shocked too when I was Dx. I found out it is a fatal lung disease online! > Where do you live? Are you married? Your age? Tell us a little about yourself. > It's helpful to list behind your name, your disease, date Dx. and state...age if you choose. > Stay close to the board, there are answers here for you. > I'm on and off for the next few days. > God bless you Ann > Mama-Sher, 69; IPF, 3-06, OR. > Don't fret about tomorrow, God is already there! > 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 2, 2008 Report Share Posted February 2, 2008 Dear Ann, Welcome to our group & sympathy for finding yourself needing to! I remember well being in a state of shock when first being investigated last year. It's a scarey, confusing time...well on & off that never changes really, BUT, here you've found a group of incredibly caring, supportive folk. Many of us have had the Lung Biopsy & for each of us it was a different experience. I think you can search via subject line in this Forum from the Web-site section.. There has been quite a lot of recent discussion. You are very wise to go for a 2nd Opinion - YOU have to feel certain that you know what is going on. All the very best & do keep us up to date. from Oz (Australia) IPF: Fibrotic NSIP/UIP????? Reynauds' May 2007 > >> > Hi Ann... I've been popping in and out checking on one of our > members (Joyce) who is very ill and currently in the hospital.> > I see your post and want to welcome you. We have about 500 members > now and it is sad when another joins in although we are glad to be > here for each other. Between most of us we do have significant > knowledge of IPF.> > I was dx (diagnosed) 3-06 and have been fairly stable since. I as > well, do not have many of the symptoms and I am currently not on O2.> > You will find us in all stages of IPF and the majority with other > chronic health problems as well.> > By all means, seek a second opinion before making any decisions as > to Tx (treatment).> > I was shocked too when I was Dx. I found out it is a fatal lung > disease online!> > Where do you live? Are you married? Your age? Tell us a little > about yourself.> > It's helpful to list behind your name, your disease, date Dx. and > state...age if you choose.> > Stay close to the board, there are answers here for you.> > I'm on and off for the next few days.> > God bless you Ann> > Mama-Sher, 69; IPF, 3-06, OR.> > Don't fret about tomorrow, God is already there!> > 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 2, 2008 Report Share Posted February 2, 2008 You came out of first time like most of us do. You heard part of what he said and remember part of what you heard and it was scary and shocking and you didn't grasp it all. Oxygen in 80-something is an example. If during a six minute walk it dropped to 88 or 89, then that might be considered normal for some age, not knowing your age. However, low 80's would have been enough right then to have put you on some oxygen. Doctors vary in considering the minimum acceptable from 90 to 89 to 88. (Ah, now know your age). Like you I'd had allergies and sinus problems all my life and so considered mine to probably be that and being out of shape. I was told when I was a teenager my lungs looked like someone who had smoked 2 packs a day for 20 years and I've never smoked. Now, this is your life...keep that in mind. All choices are yours. You need to be informed. Do you have a copy of your PFT's? If not, get one. Of the radiology report on the CT? If not get it. You can't understand and fully educate yourself without knowing what the doctors saw and then their thoughts. You face a decision soon probably on whether or not to have a lung biopsy, normally a VATS, a video laparoscopic form. This is not anyone else's decision but yours. Listen to the doctors, heed their advice but you decide. Why do they want to do it? What will be gained? What difference will it make in your treatment? You will find many here who have done it and many who haven't. Everyone's situation is different. Some of us had relatively easy experiences, some had very difficult. There are so many factors, all very personal. You will also have to make decisions on whether or not to try specific medications. So, you're starting by coming here but understand there will be few absolutes, but more educated choices. > > > > 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 2, 2008 Report Share Posted February 2, 2008 Where in NC are you? Is your referral there or to somewhere else? > > > > Hi Ann... I've been popping in and out checking on one of our > members (Joyce) who is very ill and currently in the hospital. > > I see your post and want to welcome you. We have about 500 members > now and it is sad when another joins in although we are glad to be > here for each other. Between most of us we do have significant > knowledge of IPF. > > I was dx (diagnosed) 3-06 and have been fairly stable since. I as > well, do not have many of the symptoms and I am currently not on O2. > > You will find us in all stages of IPF and the majority with other > chronic health problems as well. > > By all means, seek a second opinion before making any decisions as > to Tx (treatment). > > I was shocked too when I was Dx. I found out it is a fatal lung > disease online! > > Where do you live? Are you married? Your age? Tell us a little > about yourself. > > It's helpful to list behind your name, your disease, date Dx. and > state...age if you choose. > > Stay close to the board, there are answers here for you. > > I'm on and off for the next few days. > > God bless you Ann > > Mama-Sher, 69; IPF, 3-06, OR. > > Don't fret about tomorrow, God is already there! > > 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 2, 2008 Report Share Posted February 2, 2008 Thank you, , I was in Oz when Katrina hit here. It is a beautiful place as is NZ and the people are very warm. Thanks for responding to me. > > > > > > Hi Ann... I've been popping in and out checking on one of our > > members (Joyce) who is very ill and currently in the hospital. > > > I see your post and want to welcome you. We have about 500 members > > now and it is sad when another joins in although we are glad to be > > here for each other. Between most of us we do have significant > > knowledge of IPF. > > > I was dx (diagnosed) 3-06 and have been fairly stable since. I as > > well, do not have many of the symptoms and I am currently not on O2. > > > You will find us in all stages of IPF and the majority with other > > chronic health problems as well. > > > By all means, seek a second opinion before making any decisions as > > to Tx (treatment). > > > I was shocked too when I was Dx. I found out it is a fatal lung > > disease online! > > > Where do you live? Are you married? Your age? Tell us a little > > about yourself. > > > It's helpful to list behind your name, your disease, date Dx. and > > state...age if you choose. > > > Stay close to the board, there are answers here for you. > > > I'm on and off for the next few days. > > > God bless you Ann > > > Mama-Sher, 69; IPF, 3-06, OR. > > > Don't fret about tomorrow, God is already there! > > > 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 2, 2008 Report Share Posted February 2, 2008 I am in the greater Charlotte area and the referral is to Sanger Clinc there. I know there are a lot of good hospitals here such as NC Memorial in Chapel Hill and Duke. > > > > > > Hi Ann... I've been popping in and out checking on one of > our > > members (Joyce) who is very ill and currently in the hospital. > > > I see your post and want to welcome you. We have about 500 > members > > now and it is sad when another joins in although we are glad to be > > here for each other. Between most of us we do have significant > > knowledge of IPF. > > > I was dx (diagnosed) 3-06 and have been fairly stable since. I as > > well, do not have many of the symptoms and I am currently not on O2. > > > You will find us in all stages of IPF and the majority with other > > chronic health problems as well. > > > By all means, seek a second opinion before making any decisions > as > > to Tx (treatment). > > > I was shocked too when I was Dx. I found out it is a fatal lung > > disease online! > > > Where do you live? Are you married? Your age? Tell us a little > > about yourself. > > > It's helpful to list behind your name, your disease, date Dx. and > > state...age if you choose. > > > Stay close to the board, there are answers here for you. > > > I'm on and off for the next few days. > > > God bless you Ann > > > Mama-Sher, 69; IPF, 3-06, OR. > > > Don't fret about tomorrow, God is already there! > > > 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 2, 2008 Report Share Posted February 2, 2008 You will find many discussions here on the subject of VATS. Many factors play a role in whether it makes any sense or not for an individual. I would highlight: 1-Without it do they feel certain as to your form of disease or not? 2-Are you going to do anything different as a result of what you find out? 3-What is your health status and the current strength of your lungs and body in general? 4-What is your personal, psychological need to know the specific disease. 5-Sometimes its needed for trials and/or transplants later. If you decide to consider it ask the surgeon specifically his experiences and complications, especially with people in your condition and your age. I had a VATS to verify which form and decide whether or not to try prednisone. I'm not sure what I would have done at your age. I've chosen to this point not to try prednisone. Now, you'll find very valid arguments for and against VATS and for and against prednisone. You will get more confused but then your thoughts will solidify around what feels right for you. > > > > > > > > Hi Ann... I've been popping in and out checking on one of > our > > > members (Joyce) who is very ill and currently in the hospital. > > > > I see your post and want to welcome you. We have about 500 > members > > > now and it is sad when another joins in although we are glad to be > > > here for each other. Between most of us we do have significant > > > knowledge of IPF. > > > > I was dx (diagnosed) 3-06 and have been fairly stable since. I > as > > > well, do not have many of the symptoms and I am currently not on > O2. > > > > You will find us in all stages of IPF and the majority with > other > > > chronic health problems as well. > > > > By all means, seek a second opinion before making any decisions > as > > > to Tx (treatment). > > > > I was shocked too when I was Dx. I found out it is a fatal lung > > > disease online! > > > > Where do you live? Are you married? Your age? Tell us a little > > > about yourself. > > > > It's helpful to list behind your name, your disease, date Dx. > and > > > state...age if you choose. > > > > Stay close to the board, there are answers here for you. > > > > I'm on and off for the next few days. > > > > God bless you Ann > > > > Mama-Sher, 69; IPF, 3-06, OR. > > > > Don't fret about tomorrow, God is already there! > > > > 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 2, 2008 Report Share Posted February 2, 2008 I am near UNCC but they don't have a large research facility. I am only abou 150 miles from Duke and NC Memorial in Chapel Hill. If I don't feel more comfortable with the diagnosis, I may go there too. > > > > Hi Ann... I've been popping in and out checking on one of our > members (Joyce) who is very ill and currently in the hospital. > > I see your post and want to welcome you. We have about 500 members > now and it is sad when another joins in although we are glad to be > here for each other. Between most of us we do have significant > knowledge of IPF. > > I was dx (diagnosed) 3-06 and have been fairly stable since. I as > well, do not have many of the symptoms and I am currently not on O2. > > You will find us in all stages of IPF and the majority with other > chronic health problems as well. > > By all means, seek a second opinion before making any decisions as > to Tx (treatment). > > I was shocked too when I was Dx. I found out it is a fatal lung > disease online! > > Where do you live? Are you married? Your age? Tell us a little > about yourself. > > It's helpful to list behind your name, your disease, date Dx. and > state...age if you choose. > > Stay close to the board, there are answers here for you. > > I'm on and off for the next few days. > > God bless you Ann > > Mama-Sher, 69; IPF, 3-06, OR. > > Don't fret about tomorrow, God is already there! > > 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 2, 2008 Report Share Posted February 2, 2008 Duke would be considered the best in the state in terms of PF. Beth is going there and could fill you in. I think before making too many decisions it would be well worth the the 2 1/2 - 3 hour drive. Nothing wrong with three opinions. I've lived in Charlotte, ut grew up in Greensboro. Which brings more questions. Would you be eligible or interested in clinical trials. Would you be a candidate ultimately or interested in consideration for a transplant (your age probably working against you but not absolute by any means). Duke and the University of NC both perform them, but Duke does almost four times as many and has a higher success rate. I know we're tossing so much at you. Don't even attempt to grasp it all today. Just understand that there are many unanswered questions and choices. --- In Breathe-Support , " onecarolinagirl " wrote: > > I am in the greater Charlotte area and the referral is to Sanger > Clinc there. I know there are a lot of good hospitals here such as > NC Memorial in Chapel Hill and Duke. > > > > > > > > > > Hi Ann... I've been popping in and out checking on one of > > our > > > members (Joyce) who is very ill and currently in the hospital. > > > > I see your post and want to welcome you. We have about 500 > > members > > > now and it is sad when another joins in although we are glad to > be > > > here for each other. Between most of us we do have significant > > > knowledge of IPF. > > > > I was dx (diagnosed) 3-06 and have been fairly stable since. I > as > > > well, do not have many of the symptoms and I am currently not on > O2. > > > > You will find us in all stages of IPF and the majority with > other > > > chronic health problems as well. > > > > By all means, seek a second opinion before making any decisions > > as > > > to Tx (treatment). > > > > I was shocked too when I was Dx. I found out it is a fatal lung > > > disease online! > > > > Where do you live? Are you married? Your age? Tell us a little > > > about yourself. > > > > It's helpful to list behind your name, your disease, date Dx. > and > > > state...age if you choose. > > > > Stay close to the board, there are answers here for you. > > > > I'm on and off for the next few days. > > > > God bless you Ann > > > > Mama-Sher, 69; IPF, 3-06, OR. > > > > Don't fret about tomorrow, God is already there! > > > > 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 2, 2008 Report Share Posted February 2, 2008 Hi Bruce I thought it was 'finah in Carolina' until Wednesday. I first went to my GP because I had a cough which I have had for years and I am certain is related to my terrible sinus condition. I also had some swelling in my ankels but I had been traveling a lot and being up many days with only 4-6 hours of sleep. Now that I am not traveling that has gone away. The GP referred me to the Pulmonary Specialist who had the lung function tests and oxygen content, etc ordered along with the treadmill and ultra sound tests. He said I am really quite healthy and the oxygen content was in the 80s which he said was quite normal for my age. Again, I was in shock, but the only thing that he seemed to dwell on was the scarring on the very bottom of my lungs and he asked if I'd had pneumonia recently. Then he asked if I had been exposed to radiation, etc. I just know it was horrible hearing that alone and it was my second horrible event that day. Where in the Carolinas are you from? I grew up in the foothills. > > > > 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 2, 2008 Report Share Posted February 2, 2008 Sanger Clinic. I don't know how good or bad, but one very important question to ask a surgeon if you consider a VATS by a Sanger surgeon. How many VATS have you personally performed and what are the results? This becomes especially important at Sanger, since their emphasis is heart. You could get a great Thoracic Surgeon but 95% of his surgery heart and very little experience in this procedure. Personally, if I were in NC, I would not make any decision without seeing someone at Duke. > > > > > > > > Hi Ann... I've been popping in and out checking on one of > > our > > > members (Joyce) who is very ill and currently in the hospital. > > > > I see your post and want to welcome you. We have about 500 > > members > > > now and it is sad when another joins in although we are glad to > be > > > here for each other. Between most of us we do have significant > > > knowledge of IPF. > > > > I was dx (diagnosed) 3-06 and have been fairly stable since. I > as > > > well, do not have many of the symptoms and I am currently not on > O2. > > > > You will find us in all stages of IPF and the majority with > other > > > chronic health problems as well. > > > > By all means, seek a second opinion before making any decisions > > as > > > to Tx (treatment). > > > > I was shocked too when I was Dx. I found out it is a fatal lung > > > disease online! > > > > Where do you live? Are you married? Your age? Tell us a little > > > about yourself. > > > > It's helpful to list behind your name, your disease, date Dx. > and > > > state...age if you choose. > > > > Stay close to the board, there are answers here for you. > > > > I'm on and off for the next few days. > > > > God bless you Ann > > > > Mama-Sher, 69; IPF, 3-06, OR. > > > > Don't fret about tomorrow, God is already there! > > > > 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 2, 2008 Report Share Posted February 2, 2008 The foothills are the place to be. I grew up in Greensboro, spent lots and lots of time on Lake Hickory, went to college in Salisbury, and did live in Charlotte as well as on Lake Norman. > > > > > > 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 2, 2008 Report Share Posted February 2, 2008 You are right, Beth, it was the lung capacity. I just a little while ago did a little finger test on the O2 stauration and as I watched it, it fluctuated from 98-93 but stayed mostly around 97. The terminology is difficult with everything going on. BTW, I grew up near Boone in Caldwell County. > > > > 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 2, 2008 Report Share Posted February 2, 2008 Good girl....she has an oximeter. Now check it when you're more active. Thats when the key will be. Obviously 93-98 is good. > > > > > > 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 2, 2008 Report Share Posted February 2, 2008 Well, I can't imagine going through this without this group and we love your contributions too, even if typing isn't your thing. As to end stage or final stage, I just figured it out. I've been there 58 years so far and have no idea how many more I'll be there. > > > > > > > > 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. > > > > > > > > > > > > > > > ______________________________________________________________________ ______________ > Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2008 Report Share Posted February 2, 2008 Hello Ann, I add my greetings to all the others. Ask you Doctor many questions...read through the posts here. Some "Ask you Doctor Questions" have been posted. I'm rather sure that your breast surgery and the scarring on the lungs would not get confused. Just be as aeducated as you can and definitely get many opinions from the Doctors! They usually need PFT's( Pulmonary Function Test) HRCT ( high resolution CAT Scan) and often a biopsy before they give you a diagnosis of PF. They should do a 6 minute walk too.And loads of bloodwork! Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley Sher Bauman wrote: Hi Ann... I've been popping in and out checking on one of our members (Joyce) who is very ill and currently in the hospital. I see your post and want to welcome you. We have about 500 members now and it is sad when another joins in although we are glad to be here for each other. Between most of us we do have significant knowledge of IPF. I was dx (diagnosed) 3-06 and have been fairly stable since. I as well, do not have many of the symptoms and I am currently not on O2. You will find us in all stages of IPF and the majority with other chronic health problems as well. By all means, seek a second opinion before making any decisions as to Tx (treatment). I was shocked too when I was Dx. I found out it is a fatal lung disease online! Where do you live? Are you married? Your age? Tell us a little about yourself. It's helpful to list behind your name, your disease, date Dx. and state...age if you choose. Stay close to the board, there are answers here for you. I'm on and off for the next few days. God bless you Ann Mama-Sher, 69; IPF, 3-06, OR. Don't fret about tomorrow, God is already there! ----- Original Message ----- From: onecarolinagirl To: Breathe-Support Sent: Saturday, February 02, 2008 11:30 AM Subject: 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. No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.18/1255 - Release Date: 2/1/2008 9:59 AM Quote Link to comment Share on other sites More sharing options...
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