Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Hi, I do hope and pray you don't have a disease at all. Tell us a little about yourself. your name, state..There is usually someone on the board to answer any questions we can.Week-ends are quite at times. Hang in there and remember what ever they tell you, you do not have an expiration date ANYWHERE on you.. Take Care of you.God Bless Love and Prayers, Peggy IPF 2004, Florida"Worry looks around, Sorry looks back, Faith looks up." Last month the doctor told me I had silicosis and I started looking upinfo on it and just got more depressed .Yesterday I went for mydoctors appointment and saw a different doctor who said he doesn'tthink I have silicosis but didn't say what he thinks I might have.Next month I go for breathing tests so maybe I'll find out some goodnews . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Toadwizard You're referring to various " doctors " but my first question would be what kind of doctors are these and are they associated with teaching hospitals or where are they located? > > Last month the doctor told me I had silicosis and I started looking up > info on it and just got more depressed .Yesterday I went for my > doctors appointment and saw a different doctor who said he doesn't > think I have silicosis but didn't say what he thinks I might have. > Next month I go for breathing tests so maybe I'll find out some good > news . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Good luck and let us know what outcome you have. Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Crossing fingers Last month the doctor told me I had silicosis and I started looking upinfo on it and just got more depressed .Yesterday I went for mydoctors appointment and saw a different doctor who said he doesn'tthink I have silicosis but didn't say what he thinks I might have.Next month I go for breathing tests so maybe I'll find out some goodnews . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Thanks for the encouragement . The doctors I saw are pulmonogists . My name is ,I'm 57 and I live north of Longview Texas . > > Good luck and let us know what outcome you have. > > Beth > Age 48 Fibrotic NSIP 06/06 UCTD 07/08 > > Change everything. Love and Forgive > > > > > > Crossing fingers > > > Last month the doctor told me I had silicosis and I started looking up > info on it and just got more depressed .Yesterday I went for my > doctors appointment and saw a different doctor who said he doesn't > think I have silicosis but didn't say what he thinks I might have. > Next month I go for breathing tests so maybe I'll find out some good > news . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 > > > > Good luck and let us know what outcome you have. > > > > Beth > > Age 48 Fibrotic NSIP 06/06 UCTD 07/08 > > > > Change everything. Love and Forgive > > > > > > > > > > > > Crossing fingers > > > > > > Last month the doctor told me I had silicosis and I started looking up > > info on it and just got more depressed .Yesterday I went for my > > doctors appointment and saw a different doctor who said he doesn't > > think I have silicosis but didn't say what he thinks I might have. > > Next month I go for breathing tests so maybe I'll find out some good > > news . > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Bruce I see you're a man of few words lol > > > > > > Good luck and let us know what outcome you have. > > > > > > Beth > > > Age 48 Fibrotic NSIP 06/06 UCTD 07/08 > > > > > > Change everything. Love and Forgive > > > > > > > > > > > > > > > > > > Crossing fingers > > > > > > > > > Last month the doctor told me I had silicosis and I started looking > up > > > info on it and just got more depressed .Yesterday I went for my > > > doctors appointment and saw a different doctor who said he doesn't > > > think I have silicosis but didn't say what he thinks I might have. > > > Next month I go for breathing tests so maybe I'll find out some good > > > news . > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 I have no idea why that happens sometimes. My words were that I would advise you to please see pulmonologists beyond the area of Longview if you haven't. I would be extremely shocked to see expertise with the disease there and to see all the tests being run with the best protocol. At the least I would make the drive to UTSW in Dallas. However, I would really recommend from where you are going to the University of Alabama in Birmingham. With one day there they can give the most thorough knowledgeable evaluation and diagnosis and clear up the kind of confusion the pulmonologists so far have helped create. I would at least recommend somewhere such as that for a second opinion. You would continue to use a local pulmonologist for maintenance and day to day issues. We have many members who have been to UAB. I even have a friend who had his successful transplant several years ago there. > > > > > > > > Good luck and let us know what outcome you have. > > > > > > > > Beth > > > > Age 48 Fibrotic NSIP 06/06 UCTD 07/08 > > > > > > > > Change everything. Love and Forgive > > > > > > > > > > > > > > > > > > > > > > > > Crossing fingers > > > > > > > > > > > > Last month the doctor told me I had silicosis and I started looking > > up > > > > info on it and just got more depressed .Yesterday I went for my > > > > doctors appointment and saw a different doctor who said he doesn't > > > > think I have silicosis but didn't say what he thinks I might have. > > > > Next month I go for breathing tests so maybe I'll find out some good > > > > news . > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Great suggestions Bruce but problem is I have no insurance and don't have the money for that . > > > > > > > > > > Good luck and let us know what outcome you have. > > > > > > > > > > Beth > > > > > Age 48 Fibrotic NSIP 06/06 UCTD 07/08 > > > > > > > > > > Change everything. Love and Forgive > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Crossing fingers > > > > > > > > > > > > > > > Last month the doctor told me I had silicosis and I started > looking > > > up > > > > > info on it and just got more depressed .Yesterday I went for my > > > > > doctors appointment and saw a different doctor who said he > doesn't > > > > > think I have silicosis but didn't say what he thinks I might > have. > > > > > Next month I go for breathing tests so maybe I'll find out some > good > > > > > news . > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Hate to hear that but with UTSW a state medical school they might well be able to help you. I do hope whatever you get some answers. > > > > > > > > > > > > Good luck and let us know what outcome you have. > > > > > > > > > > > > Beth > > > > > > Age 48 Fibrotic NSIP 06/06 UCTD 07/08 > > > > > > > > > > > > Change everything. Love and Forgive > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Crossing fingers > > > > > > > > > > > > > > > > > > Last month the doctor told me I had silicosis and I started > > looking > > > > up > > > > > > info on it and just got more depressed .Yesterday I went for my > > > > > > doctors appointment and saw a different doctor who said he > > doesn't > > > > > > think I have silicosis but didn't say what he thinks I might > > have. > > > > > > Next month I go for breathing tests so maybe I'll find out some > > good > > > > > > news . > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Also nearly every facility does have a charity foundation. We do have members with no insurance and no money getting treatment at the finest facilities in the country. Not trying to build false hopes, but just want you to know there are possibilities. > > > > > > > > > > > > > > Good luck and let us know what outcome you have. > > > > > > > > > > > > > > Beth > > > > > > > Age 48 Fibrotic NSIP 06/06 UCTD 07/08 > > > > > > > > > > > > > > Change everything. Love and Forgive > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Crossing fingers > > > > > > > > > > > > > > > > > > > > > Last month the doctor told me I had silicosis and I started > > > looking > > > > > up > > > > > > > info on it and just got more depressed .Yesterday I went for > my > > > > > > > doctors appointment and saw a different doctor who said he > > > doesn't > > > > > > > think I have silicosis but didn't say what he thinks I might > > > have. > > > > > > > Next month I go for breathing tests so maybe I'll find out > some > > > good > > > > > > > news . > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 I have been in the same position as you are in concerning insurance. I have found that by calling and talking to the hospitals (University types) they will work with you to help with expenses. It is certainly worth a try. Fay IPF 06/06 IL Crossing fingers> > > > > >> > > > > >> > > > > > Last month the doctor told me I had silicosis and I started> > looking> > > > up> > > > > > info on it and just got more depressed .Yesterday I went formy> > > > > > doctors appointment and saw a different doctor who said he> > doesn't> > > > > > think I have silicosis but didn't say what he thinks I might> > have.> > > > > > Next month I go for breathing tests so maybe I'll find outsome> > good> > > > > > news .> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 , I'm one of those that Bruce is talking about. I have no insurance at all right now. I'm eligible for Medicare in November of this year but currently have zero coverage. I am however receiving my care at Duke University Medical Center at no cost to me through their "financial hardship" program. My most expensive meds I'm receiving at no charge from the manufacturers. There were forms to fill out and proof that had to be submitted but it worked out for me. I'm not trying to offer anyone an "easy solution" but there are programs out there that are worth looking into. Especially if it means getting the care we need. Most university medical centers across the country have programs that can be sleuthed out. Good luck to you ! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Crossing fingers> > > > > > >> > > > > > >> > > > > > > Last month the doctor told me I had silicosis and Istarted> > > looking> > > > > up> > > > > > > info on it and just got more depressed .Yesterday I wentfor> my> > > > > > > doctors appointment and saw a different doctor who said he> > > doesn't> > > > > > > think I have silicosis but didn't say what he thinks Imight> > > have.> > > > > > > Next month I go for breathing tests so maybe I'll find out> some> > > good> > > > > > > news .> > > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
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