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 AMSubject: 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 laterJoAnn 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 Well, I don't know who or where this Dr. Lovy is, but I sure don't feel good about him if he made that statement about most people with UIP only live six months. That is not only inappropriate to say but it is plane wrong. The average life span for patients with UIP is 2-5 years with a mean of 3.2. Many exceed those times. I was diagnosed with UIP in June 2007, had a VATS in October 2007, the biopsy was reviewed by three pathologists, two expert in ILD's. I am not dead. However, it does sound like he's setting you up with the appropriate tests and showing the appropriate concern so I can see why you would be impressed by that. But that one statement he made is just from deep deep left field. > > 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2009 Report Share Posted November 13, 2009 JoAnn, Rather than Dr. Levy having another biopsy performed, it would seem more logical to have the slides from your first biopsy read by another very reputable pathologist to either comfirm or call into question your diagnosis. Before going on with this second biopsy, ask him to justify more clearly the reasons for doing so. And I would certainly expect to wait until after your next CT scan and other further testing. I am with Bruce in calling into question his jumping to a conclusion based upon longevity. Jerry/Mississippi/54/IPF/dx April 05Who believes that hard times help us appreciate the good times even more. Quote Link to comment Share on other sites More sharing options...
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