Guest guest Posted November 13, 2009 Report Share Posted November 13, 2009 > > JoAnn, > I'm glad you are pleased with Dr. Lovy. Please let us know the results of all your tests. I'm not sure why he would say that people with UIP die in 6 months. Are you certain that's what he said? We have many many members with UIP who have been alive for years and have a good quality of life. > You are in my thoughts and prayers! >  > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 >  >  > > > > > ________________________________ > > To: Breathe-Support > Sent: Fri, November 13, 2009 8:48:25 AM > Subject: New Pulmo-Dude > >  > Yesterday I had my first appt. with Dr. Lovy, who is the Dr. of Sciba, another member. I was really impressed. > > Before I go on I would like to thank every one of you for the things I have learned from this board. I am always telling everyone of the things I learned here, Dr., friends, relatives, and even strangers. I have learned what to ask Drs. for, what to expect from this horrible disease, even getting on o2 because of all of you. > > I am a lurker, I read posts everyday. Sometimes three or four times a day. I am always reading. I just don't feel comfortable posting. I have posted when I have questions for all of you. and I really appreciate the answers, I just don't follow through and keep posting. I'm sorry. I still love you all. > > Anyway back to my appt. Dr. Lovy was surprised by the lack of tests that I had done by my last Dr. I had already fired my local Pulmodude in April. Last year I had asked to be sent to U of Michigan (which is a Center of Excellance). I went there, had different blood tests done, but that was it, now my Dr. there has left and gone to a different facility so I am being assigned to another Dr.,which I haven't seen yet. > The new Dr. I went to is in my hometown. I was really impressed when I made my appt. The person making appts knew all about PF, so maybe my dr will be preeety good. Dr. Lovy was surprised that I haven't had a CT scan done since I was dx 2 years ago. I am scheduled for one on Nov 30 and also PFT's. I go back to see him on Dec. 21. He also said I should be using o2 at night, remember I questioned that back in July when I first when on o2. My dr then said I didn't need it, I also have sleep apnes and use a cpap machine. Dr. Lovy is calling my o2 company and getting that set up for me. > I had a VATS in 07 and was told I had UIP Dr. Lovy said that can't be right because he said that most people with UIP only live 6 months. I went back through posts and see that alot of us have UIP and are still alive long after 6 months, I know we don't have expireation dates on our butts. Why would he say this? My daughter was with me now she thinks I am going to die soon. Dr. Lovy wants me to have another biopsy done but this time just down my throat with the tube. I thought that this kind couldn't get enough tissue to make a diagnosis? Please help. Dr. Lovy is also going to set me up for Pulmonary Rehab again because he doesn't think my last one did it right. > I'm really sorry this is soo long. I will close for now and ask more later > JoAnn 53 MI UIP 9/07 > Thank you Beth Today I got a phone call from the Hospital that my dr. is affiliated with and they said they had me set up to have a Sleep Study done. I am going on Sunday night for a new sleep study. I had one done in 08 but my dr wants me to have another one done because now I am on o2. I like this Dr because he is having tests done that my other Dr. didn't, but like Bruce said I don't agree with the 6 months either. I don't see an expiration date on my butt, of course I can't see my butt very good, but I don't think there is one. Jerry I agree about the Biopsy, where is my other one. I had it done in Oct 07. My Dr. at U of M had me sign paper 2 times to ask the Dr that did it to send the results to him but nothing was sent. If we can't find the results and he does another is the one down the throat any good. I was under the impression that that kind can't get a big enough piece of tissue to do any good. Thank you everyone I will let you know as I get more tests done. JoAnn 53 MI UIP 9/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2009 Report Share Posted November 13, 2009 JoAnn, I agree with Jerry. I don't know why he would want to do a biopsy down the throat, after you already had the vats. Usually it is the other way around. That doesn't make any sense to me. You are correct in that several people (including me) have had the bronchoscopy and were told the tissue recovered was to little for a diagnose, and they were then referred to a vats or open lung. Having the slides reviewed by other experts is usually a good idea. Marcia Quote Link to comment Share on other sites More sharing options...
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