Guest guest Report post Posted October 14, 2007 Joyce, what are immune suppressant drugs? My doctor has not mentioned any to me. Kay Re: New Sandie, My opinion is NO, you should not sit around to see what is happening next. If your doctor is reasonably sure that you have pulmonary fibrosis and that honeycombing is already present, then it is time to get your fatigues on and go to war. You need to find a teaching hospital or at least a pulmonary doctor that is familiar with interstitial lung disease. My rheumatologist and pulmonologist work together. Are you on immunosuppressant drugs? RA (or any autoimmune disease can be vicious). Pulmonary Fibrosis can move slowly or like wildfire. Neither is to be ignored. Those people who are not "overly worried" are not you. This is your body, this is your life. Be "overly" concerned! If your medical team is lethargic about your disease progress, then move on. You deserve those grandchildren! Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. & g t ; > >> > > Hi all,> > >> > > My name is Sandie and I was just diagnosed with Pulmonary > Fibrosis,> > > waiting to go to the Mayo Clinic because I also have RA and I am> > unable> > > to fight off infections. I am 36 years old.> > >> > > My questions are this. Since I have hounded doctors to listen to > me> > > that something is wrong finally one of them sent me in for all > these> > > tests and found the minimal honeycombing on my lung. He said its> > > minimal and I am not dieing yet nonetheless its still pulmonary> > > fibrosis and because everyone is so different they just have to > watch> > > and see what will happen. I dont think thats right because what I > have> > > read is that once it goes into advanced stage there is nothing > they> & g t; can> > > do because there is no cure. What should I be doing now?> > >> > > Thanks so much> > >> > > Sandie> > >> >> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 14, 2007 Joyce, what are immune suppressant drugs? My doctor has not mentioned any to me. Kay Re: New Sandie, My opinion is NO, you should not sit around to see what is happening next. If your doctor is reasonably sure that you have pulmonary fibrosis and that honeycombing is already present, then it is time to get your fatigues on and go to war. You need to find a teaching hospital or at least a pulmonary doctor that is familiar with interstitial lung disease. My rheumatologist and pulmonologist work together. Are you on immunosuppressant drugs? RA (or any autoimmune disease can be vicious). Pulmonary Fibrosis can move slowly or like wildfire. Neither is to be ignored. Those people who are not "overly worried" are not you. This is your body, this is your life. Be "overly" concerned! If your medical team is lethargic about your disease progress, then move on. You deserve those grandchildren! Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. & g t ; > >> > > Hi all,> > >> > > My name is Sandie and I was just diagnosed with Pulmonary > Fibrosis,> > > waiting to go to the Mayo Clinic because I also have RA and I am> > unable> > > to fight off infections. I am 36 years old.> > >> > > My questions are this. Since I have hounded doctors to listen to > me> > > that something is wrong finally one of them sent me in for all > these> > > tests and found the minimal honeycombing on my lung. He said its> > > minimal and I am not dieing yet nonetheless its still pulmonary> > > fibrosis and because everyone is so different they just have to > watch> > > and see what will happen. I dont think thats right because what I > have> > > read is that once it goes into advanced stage there is nothing > they> & g t; can> > > do because there is no cure. What should I be doing now?> > >> > > Thanks so much> > >> > > Sandie> > >> >> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 14, 2007 Immunosuppressive drugs or immunosuppressants are drugs that are used in immunosuppressive therapy to inhibit or prevent activity of the immune system. Clinically they are used to: prevent the rejection of transplanted organs and tissues (e.g. bone marrow, heart, kidney, liver) treatment of autoimmune diseases or diseases that are most likely of autoimmune origin (e.g. rheumatoid arthritis, myasthenia gravis, systemic lupus erythematosus, Crohn's disease, and ulcerative colitis). treatment of some other non-autoimmune inflammatory diseases (eg. long term Allergic Asthma control). Many here, such as Joyce, have autoimmune diseases tied in with their IPF. I may or may not which is part of what I'm trying to pin down. While there are no drug treatments for IPF there are meds to help with autoimmune diseases as well as prednisone helps with some of the other Interstitial Lung Diseases. There are also other possibilities as to what you have and causes that you won't know until a complete diagnosis. As someone said HOUND HOUND HOUND. If you're not finding out anything find someone else. But, there is a need to know so you can live as well as possible and treat that which is treatable or manageable and not take meds with risks and no potential help. It's your health and your life and you're going to have to manage it. Insist that you get the diagnosis and information you need to do so. > & g t ; > > > > > > Hi all, > > > > > > > > My name is Sandie and I was just diagnosed with Pulmonary > > Fibrosis, > > > > waiting to go to the Mayo Clinic because I also have RA and I am > > > unable > > > > to fight off infections. I am 36 years old. > > > > > > > > My questions are this. Since I have hounded doctors to listen to > > me > > > > that something is wrong finally one of them sent me in for all > > these > > > > tests and found the minimal honeycombing on my lung. He said its > > > > minimal and I am not dieing yet nonetheless its still pulmonary > > > > fibrosis and because everyone is so different they just have to > > watch > > > > and see what will happen. I dont think thats right because what I > > have > > > > read is that once it goes into advanced stage there is nothing > > they > > & g t; can > > > > do because there is no cure. What should I be doing now? > > > > > > > > Thanks so much > > > > > > > > Sandie > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 14, 2007 Immunosuppressive drugs or immunosuppressants are drugs that are used in immunosuppressive therapy to inhibit or prevent activity of the immune system. Clinically they are used to: prevent the rejection of transplanted organs and tissues (e.g. bone marrow, heart, kidney, liver) treatment of autoimmune diseases or diseases that are most likely of autoimmune origin (e.g. rheumatoid arthritis, myasthenia gravis, systemic lupus erythematosus, Crohn's disease, and ulcerative colitis). treatment of some other non-autoimmune inflammatory diseases (eg. long term Allergic Asthma control). Many here, such as Joyce, have autoimmune diseases tied in with their IPF. I may or may not which is part of what I'm trying to pin down. While there are no drug treatments for IPF there are meds to help with autoimmune diseases as well as prednisone helps with some of the other Interstitial Lung Diseases. There are also other possibilities as to what you have and causes that you won't know until a complete diagnosis. As someone said HOUND HOUND HOUND. If you're not finding out anything find someone else. But, there is a need to know so you can live as well as possible and treat that which is treatable or manageable and not take meds with risks and no potential help. It's your health and your life and you're going to have to manage it. Insist that you get the diagnosis and information you need to do so. > & g t ; > > > > > > Hi all, > > > > > > > > My name is Sandie and I was just diagnosed with Pulmonary > > Fibrosis, > > > > waiting to go to the Mayo Clinic because I also have RA and I am > > > unable > > > > to fight off infections. I am 36 years old. > > > > > > > > My questions are this. Since I have hounded doctors to listen to > > me > > > > that something is wrong finally one of them sent me in for all > > these > > > > tests and found the minimal honeycombing on my lung. He said its > > > > minimal and I am not dieing yet nonetheless its still pulmonary > > > > fibrosis and because everyone is so different they just have to > > watch > > > > and see what will happen. I dont think thats right because what I > > have > > > > read is that once it goes into advanced stage there is nothing > > they > > & g t; can > > > > do because there is no cure. What should I be doing now? > > > > > > > > Thanks so much > > > > > > > > Sandie > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 14, 2007 Kay, Those of us who have an autoimmune disease (there are literally hundreds of them) have an overactive immune system. Our immune system then attacks organs and tissue within our bodies as if they are a foreigner and a danger. In my case, Lupus will attack almost every body system. The doctors think it is why I have PF. I take drugs to suppress my overactive immune system. I have taken Imuran and Methotrexate. Could not tolerate either. For the last 9 years I have taken Cellcept which is a drug used for transplant rejection. Immunosuppresants are a two edged sword because they make us susceptible to infection and even cancer. Some pulmonologists will treat IPF and other forms of PF with Imuran. There is the opinion out there that IPF itself might be an autoimmune disease. Just another theory....who knows. My brain is not connecting so well this evening. Hope some of this made sense. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> & g t ; > >> > > > Hi all,> > > >> > > > My name is Sandie and I was just diagnosed with Pulmonary > > Fibrosis,> > > > waiting to go to the Mayo Clinic because I also have RA and I am> > > unable> > > > to fight off infections. I am 36 years old.> > > >> > > > My questions are this. Since I have hounded doctors to listen to > > me> > > > that something is wrong finally one of them sent me in for all > > these> > > > tests and found the minimal honeycombing on my lung. He said its> > > > minimal and I am not dieing yet nonetheless its still pulmonary> > > > fibrosis and because everyone is so different they just have to > > watch> > > > and see what will happen. I dont think thats right because what I > > have> > > > read is that once it goes into advanced stage there is nothing > > they> > & g t; can> > > > do because there is no cure. What should I be doing now?> > > >> > > > Thanks so much> > > >> > > > Sandie> > > >> > >> >> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 14, 2007 Kay, Those of us who have an autoimmune disease (there are literally hundreds of them) have an overactive immune system. Our immune system then attacks organs and tissue within our bodies as if they are a foreigner and a danger. In my case, Lupus will attack almost every body system. The doctors think it is why I have PF. I take drugs to suppress my overactive immune system. I have taken Imuran and Methotrexate. Could not tolerate either. For the last 9 years I have taken Cellcept which is a drug used for transplant rejection. Immunosuppresants are a two edged sword because they make us susceptible to infection and even cancer. Some pulmonologists will treat IPF and other forms of PF with Imuran. There is the opinion out there that IPF itself might be an autoimmune disease. Just another theory....who knows. My brain is not connecting so well this evening. Hope some of this made sense. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> & g t ; > >> > > > Hi all,> > > >> > > > My name is Sandie and I was just diagnosed with Pulmonary > > Fibrosis,> > > > waiting to go to the Mayo Clinic because I also have RA and I am> > > unable> > > > to fight off infections. I am 36 years old.> > > >> > > > My questions are this. Since I have hounded doctors to listen to > > me> > > > that something is wrong finally one of them sent me in for all > > these> > > > tests and found the minimal honeycombing on my lung. He said its> > > > minimal and I am not dieing yet nonetheless its still pulmonary> > > > fibrosis and because everyone is so different they just have to > > watch> > > > and see what will happen. I dont think thats right because what I > > have> > > > read is that once it goes into advanced stage there is nothing > > they> > & g t; can> > > > do because there is no cure. What should I be doing now?> > > >> > > > Thanks so much> > > >> > > > Sandie> > > >> > >> >> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 14, 2007 THANK YOU ALL for your information! It helps me so much! I am still kind of in shock at all of this and my husband is kind of in denial I think. he tends to believe doctors when they say something I on the other hand dont. After all I got the flesh eating bacteria from a doctors clinic, a contaminated bottle of lidocaine. I just dont trust them much since then. Joyce, I take methotrexate and Orencia been on the metho for several years and Orencia has been a few months although I have had to miss the last 2 times because of being sick. I dont have a lung doctor apparently they referred me to the Mayo Clinic in Rochester, MN so I am waiting until Monday when the internists office calls and tells me what is going on. I just dont like this sitting around waiting for something to happen. especially when I had to HOUND to even get this far and its not their lungs or their life its mine. I will keep hounding. I think your name is , what are VATS? Sorry dont know what that is yet. Sandie > > & g t ; > > > > > > > Hi all, > > > > > > > > > > My name is Sandie and I was just diagnosed with Pulmonary > > > Fibrosis, > > > > > waiting to go to the Mayo Clinic because I also have RA and I am > > > > unable > > > > > to fight off infections. I am 36 years old. > > > > > > > > > > My questions are this. Since I have hounded doctors to listen to > > > me > > > > > that something is wrong finally one of them sent me in for all > > > these > > > > > tests and found the minimal honeycombing on my lung. He said its > > > > > minimal and I am not dieing yet nonetheless its still pulmonary > > > > > fibrosis and because everyone is so different they just have to > > > watch > > > > > and see what will happen. I dont think thats right because what > I > > > have > > > > > read is that once it goes into advanced stage there is nothing > > > they > > > & g t; can > > > > > do because there is no cure. What should I be doing now? > > > > > > > > > > Thanks so much > > > > > > > > > > Sandie > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 14, 2007 VATS is Video Assisted Thoroscopic Surgery. Its a laparascopic version of a lung biopsy. As the only sure way to diagnose specific Interstitial Lung Diseases has normally been a lung biopsy and pathology, this is a less risky, less probably side effect means of that biopsy. As to waiting, I would think waiting for the Mayo Clinic would be worth it. Knowing you're getting the best you can. > > > & g t ; > > > > > > > > Hi all, > > > > > > > > > > > > My name is Sandie and I was just diagnosed with Pulmonary > > > > Fibrosis, > > > > > > waiting to go to the Mayo Clinic because I also have RA and > I am > > > > > unable > > > > > > to fight off infections. I am 36 years old. > > > > > > > > > > > > My questions are this. Since I have hounded doctors to > listen to > > > > me > > > > > > that something is wrong finally one of them sent me in for > all > > > > these > > > > > > tests and found the minimal honeycombing on my lung. He > said its > > > > > > minimal and I am not dieing yet nonetheless its still > pulmonary > > > > > > fibrosis and because everyone is so different they just > have to > > > > watch > > > > > > and see what will happen. I dont think thats right because > what > > I > > > > have > > > > > > read is that once it goes into advanced stage there is > nothing > > > > they > > > > & g t; can > > > > > > do because there is no cure. What should I be doing now? > > > > > > > > > > > > Thanks so much > > > > > > > > > > > > Sandie > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 14, 2007 Sandie, The Methotrtexate is known to cause PF!!!!! Talk to the docs!!! Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley stokh24761 wrote: THANK YOU ALL for your information! It helps me so much! I am still kind of in shock at all of this and my husband is kind of in denial I think. he tends to believe doctors when they say something I on the other hand dont. After all I got the flesh eating bacteria from a doctors clinic, a contaminated bottle of lidocaine. I just dont trust them much since then. Joyce, I take methotrexate and Orencia been on the metho for several years and Orencia has been a few months although I have had to miss the last 2 times because of being sick. I dont have a lung doctor apparently they referred me to the Mayo Clinic in Rochester, MN so I am waiting until Monday when the internists office calls and tells me what is going on. I just dont like this sitting around waiting for something to happen. especially when I had to HOUND to even get this far and its not their lungs or their life its mine. I will keep hounding. I think your name is , what are VATS? Sorry dont know what that is yet. Sandie > > & g t ; > > > > > > > Hi all, > > > > > > > > > > My name is Sandie and I was just diagnosed with Pulmonary > > > Fibrosis, > > > > > waiting to go to the Mayo Clinic because I also have RA and I am > > > > unable > > > > > to fight off infections. I am 36 years old. > > > > > > > > > > My questions are this. Since I have hounded doctors to listen to > > > me > > > > > that something is wrong finally one of them sent me in for all > > > these > > > > > tests and found the minimal honeycombing on my lung. He said its > > > > > minimal and I am not dieing yet nonetheless its still pulmonary > > > > > fibrosis and because everyone is so different they just have to > > > watch > > > > > and see what will happen. I dont think thats right because what > I > > > have > > > > > read is that once it goes into advanced stage there is nothing > > > they > > > & g t; can > > > > > do because there is no cure. What should I be doing now? > > > > > > > > > > Thanks so much > > > > > > > > > > Sandie > > > > > > > > > > > > > > > No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.14.10/1070 - Release Date: 10/14/2007 9:22 AM Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 14, 2007 Sandie, The Methotrtexate is known to cause PF!!!!! Talk to the docs!!! Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley stokh24761 wrote: THANK YOU ALL for your information! It helps me so much! I am still kind of in shock at all of this and my husband is kind of in denial I think. he tends to believe doctors when they say something I on the other hand dont. After all I got the flesh eating bacteria from a doctors clinic, a contaminated bottle of lidocaine. I just dont trust them much since then. Joyce, I take methotrexate and Orencia been on the metho for several years and Orencia has been a few months although I have had to miss the last 2 times because of being sick. I dont have a lung doctor apparently they referred me to the Mayo Clinic in Rochester, MN so I am waiting until Monday when the internists office calls and tells me what is going on. I just dont like this sitting around waiting for something to happen. especially when I had to HOUND to even get this far and its not their lungs or their life its mine. I will keep hounding. I think your name is , what are VATS? Sorry dont know what that is yet. Sandie > > & g t ; > > > > > > > Hi all, > > > > > > > > > > My name is Sandie and I was just diagnosed with Pulmonary > > > Fibrosis, > > > > > waiting to go to the Mayo Clinic because I also have RA and I am > > > > unable > > > > > to fight off infections. I am 36 years old. > > > > > > > > > > My questions are this. Since I have hounded doctors to listen to > > > me > > > > > that something is wrong finally one of them sent me in for all > > > these > > > > > tests and found the minimal honeycombing on my lung. He said its > > > > > minimal and I am not dieing yet nonetheless its still pulmonary > > > > > fibrosis and because everyone is so different they just have to > > > watch > > > > > and see what will happen. I dont think thats right because what > I > > > have > > > > > read is that once it goes into advanced stage there is nothing > > > they > > > & g t; can > > > > > do because there is no cure. What should I be doing now? > > > > > > > > > > Thanks so much > > > > > > > > > > Sandie > > > > > > > > > > > > > > > No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.14.10/1070 - Release Date: 10/14/2007 9:22 AM Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 14, 2007 Sandie, The Methotrtexate is known to cause PF!!!!! Talk to the docs!!! Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley stokh24761 wrote: THANK YOU ALL for your information! It helps me so much! I am still kind of in shock at all of this and my husband is kind of in denial I think. he tends to believe doctors when they say something I on the other hand dont. After all I got the flesh eating bacteria from a doctors clinic, a contaminated bottle of lidocaine. I just dont trust them much since then. Joyce, I take methotrexate and Orencia been on the metho for several years and Orencia has been a few months although I have had to miss the last 2 times because of being sick. I dont have a lung doctor apparently they referred me to the Mayo Clinic in Rochester, MN so I am waiting until Monday when the internists office calls and tells me what is going on. I just dont like this sitting around waiting for something to happen. especially when I had to HOUND to even get this far and its not their lungs or their life its mine. I will keep hounding. I think your name is , what are VATS? Sorry dont know what that is yet. Sandie > > & g t ; > > > > > > > Hi all, > > > > > > > > > > My name is Sandie and I was just diagnosed with Pulmonary > > > Fibrosis, > > > > > waiting to go to the Mayo Clinic because I also have RA and I am > > > > unable > > > > > to fight off infections. I am 36 years old. > > > > > > > > > > My questions are this. Since I have hounded doctors to listen to > > > me > > > > > that something is wrong finally one of them sent me in for all > > > these > > > > > tests and found the minimal honeycombing on my lung. He said its > > > > > minimal and I am not dieing yet nonetheless its still pulmonary > > > > > fibrosis and because everyone is so different they just have to > > > watch > > > > > and see what will happen. I dont think thats right because what > I > > > have > > > > > read is that once it goes into advanced stage there is nothing > > > they > > > & g t; can > > > > > do because there is no cure. What should I be doing now? > > > > > > > > > > Thanks so much > > > > > > > > > > Sandie > > > > > > > > > > > > > > > No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.14.10/1070 - Release Date: 10/14/2007 9:22 AM Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 15, 2007 Yes I agree , and thats just unfair to us the patients! My old doctor who I had for 20 years kind of disappeared when the clinic changed over and I had to switch clinic then because that one went to a federal clinic and I was paying out of pocket for labs and stuff I finally hunted for her and found her going to see her on the 26th. i know she will listen to me and get me to where I need to go. The internist is good but he cant address all my issues and I dont like that he isnt referring me to a lung doctor yet. The breathing problem is what kept nagging me to hound those doctors I kept saying this isnt normal something is wrong I shouldnt be short of breath and its constantly~! I pray for all of us! Sandie > > > > > > > > & g t ; > > > > > > > > > > > > > Hi all, > > > > > > > > > > > > > > > > > > > > > > My name is Sandie and I was just diagnosed with > > > > Pulmonary > > > > > > > > > Fibrosis, > > > > > > > > > > > waiting to go to the Mayo Clinic because I also > have > > > RA > > > > and > > > > > > I am > > > > > > > > > > unable > > > > > > > > > > > to fight off infections. I am 36 years old. > > > > > > > > > > > > > > > > > > > > > > My questions are this. Since I have hounded > doctors to > > > > > > listen to > > > > > > > > > me > > > > > > > > > > > that something is wrong finally one of them sent > me > > > in > > > > for > > > > > > all > > > > > > > > > these > > > > > > > > > > > tests and found the minimal honeycombing on my > lung. > > > He > > > > > > said its > > > > > > > > > > > minimal and I am not dieing yet nonetheless its > still > > > > > > pulmonary > > > > > > > > > > > fibrosis and because everyone is so different they > > > just > > > > > > have to > > > > > > > > > watch > > > > > > > > > > > and see what will happen. I dont think thats right > > > > because > > > > > > what > > > > > > > I > > > > > > > > > have > > > > > > > > > > > read is that once it goes into advanced stage > there is > > > > > > nothing > > > > > > > > > they > > > > > > > > > & g t; can > > > > > > > > > > > do because there is no cure. What should I be > doing > > > now? > > > > > > > > > > > > > > > > > > > > > > Thanks so much > > > > > > > > > > > > > > > > > > > > > > Sandie > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >----------------------------------------------------------- -- > ---- > > > -- > > > > ----- > > > > > > > > > > > >No virus found in this incoming message. > > > > > >Checked by AVG Free Edition. > > > > > >Version: 7.5.488 / Virus Database: 269.14.10/1070 - Release > > > Date: > > > > 10/14/2007 9:22 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 15, 2007 Yes I agree , and thats just unfair to us the patients! My old doctor who I had for 20 years kind of disappeared when the clinic changed over and I had to switch clinic then because that one went to a federal clinic and I was paying out of pocket for labs and stuff I finally hunted for her and found her going to see her on the 26th. i know she will listen to me and get me to where I need to go. The internist is good but he cant address all my issues and I dont like that he isnt referring me to a lung doctor yet. The breathing problem is what kept nagging me to hound those doctors I kept saying this isnt normal something is wrong I shouldnt be short of breath and its constantly~! I pray for all of us! Sandie > > > > > > > > & g t ; > > > > > > > > > > > > > Hi all, > > > > > > > > > > > > > > > > > > > > > > My name is Sandie and I was just diagnosed with > > > > Pulmonary > > > > > > > > > Fibrosis, > > > > > > > > > > > waiting to go to the Mayo Clinic because I also > have > > > RA > > > > and > > > > > > I am > > > > > > > > > > unable > > > > > > > > > > > to fight off infections. I am 36 years old. > > > > > > > > > > > > > > > > > > > > > > My questions are this. Since I have hounded > doctors to > > > > > > listen to > > > > > > > > > me > > > > > > > > > > > that something is wrong finally one of them sent > me > > > in > > > > for > > > > > > all > > > > > > > > > these > > > > > > > > > > > tests and found the minimal honeycombing on my > lung. > > > He > > > > > > said its > > > > > > > > > > > minimal and I am not dieing yet nonetheless its > still > > > > > > pulmonary > > > > > > > > > > > fibrosis and because everyone is so different they > > > just > > > > > > have to > > > > > > > > > watch > > > > > > > > > > > and see what will happen. I dont think thats right > > > > because > > > > > > what > > > > > > > I > > > > > > > > > have > > > > > > > > > > > read is that once it goes into advanced stage > there is > > > > > > nothing > > > > > > > > > they > > > > > > > > > & g t; can > > > > > > > > > > > do because there is no cure. What should I be > doing > > > now? > > > > > > > > > > > > > > > > > > > > > > Thanks so much > > > > > > > > > > > > > > > > > > > > > > Sandie > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >----------------------------------------------------------- -- > ---- > > > -- > > > > ----- > > > > > > > > > > > >No virus found in this incoming message. > > > > > >Checked by AVG Free Edition. > > > > > >Version: 7.5.488 / Virus Database: 269.14.10/1070 - Release > > > Date: > > > > 10/14/2007 9:22 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 15, 2007 Yes I agree , and thats just unfair to us the patients! My old doctor who I had for 20 years kind of disappeared when the clinic changed over and I had to switch clinic then because that one went to a federal clinic and I was paying out of pocket for labs and stuff I finally hunted for her and found her going to see her on the 26th. i know she will listen to me and get me to where I need to go. The internist is good but he cant address all my issues and I dont like that he isnt referring me to a lung doctor yet. The breathing problem is what kept nagging me to hound those doctors I kept saying this isnt normal something is wrong I shouldnt be short of breath and its constantly~! I pray for all of us! Sandie > > > > > > > > & g t ; > > > > > > > > > > > > > Hi all, > > > > > > > > > > > > > > > > > > > > > > My name is Sandie and I was just diagnosed with > > > > Pulmonary > > > > > > > > > Fibrosis, > > > > > > > > > > > waiting to go to the Mayo Clinic because I also > have > > > RA > > > > and > > > > > > I am > > > > > > > > > > unable > > > > > > > > > > > to fight off infections. I am 36 years old. > > > > > > > > > > > > > > > > > > > > > > My questions are this. Since I have hounded > doctors to > > > > > > listen to > > > > > > > > > me > > > > > > > > > > > that something is wrong finally one of them sent > me > > > in > > > > for > > > > > > all > > > > > > > > > these > > > > > > > > > > > tests and found the minimal honeycombing on my > lung. > > > He > > > > > > said its > > > > > > > > > > > minimal and I am not dieing yet nonetheless its > still > > > > > > pulmonary > > > > > > > > > > > fibrosis and because everyone is so different they > > > just > > > > > > have to > > > > > > > > > watch > > > > > > > > > > > and see what will happen. I dont think thats right > > > > because > > > > > > what > > > > > > > I > > > > > > > > > have > > > > > > > > > > > read is that once it goes into advanced stage > there is > > > > > > nothing > > > > > > > > > they > > > > > > > > > & g t; can > > > > > > > > > > > do because there is no cure. What should I be > doing > > > now? > > > > > > > > > > > > > > > > > > > > > > Thanks so much > > > > > > > > > > > > > > > > > > > > > > Sandie > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >----------------------------------------------------------- -- > ---- > > > -- > > > > ----- > > > > > > > > > > > >No virus found in this incoming message. > > > > > >Checked by AVG Free Edition. > > > > > >Version: 7.5.488 / Virus Database: 269.14.10/1070 - Release > > > Date: > > > > 10/14/2007 9:22 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 15, 2007 I hear your desparation and it brings tears. However, I hear also you saying you have no choice. Not to be argumentative but I would encourage you to explore choices carefully. They may be drastic. But the world's smallest apartment and health beats any house. I know we preach financial responsibility but health is also more important that paying any debts. Consider any local programs or federal that might help you. Talk to the public hospital there. Just do anything possible for yourself. I speak from experience as I kept saying I had to have this and to have it I had to have this job and I had to work 65 hours per week and I ended up in bad shape in many ways having to have things I really didn't have to have. My life is much simpler now and certainly low budget and may become more so soon. But I almost killed myself physically, mentally and emotionally before I wised up. I also couldn't have survived without counseling and I know some are insulted when its recommended. However, going through what you have and what you are and what you face, and knowing how I couldn't have survived without it, I also would ask you to consider it if you haven't already done so. I hear so much pain and desparation and anger and determination but I hear one person trying to do more than is humanly possible to survive. I tried.....I was the best at everything. Took on every responsibility there was. I destroyed my well being in the process. > > > > > > > & g t ; > > > > > > > > > > > > Hi all, > > > > > > > > > > > > > > > > > > > > My name is Sandie and I was just diagnosed with > > > Pulmonary > > > > > > > > Fibrosis, > > > > > > > > > > waiting to go to the Mayo Clinic because I also > have RA > > > and > > > > > I am > > > > > > > > > unable > > > > > > > > > > to fight off infections. I am 36 years old. > > > > > > > > > > > > > > > > > > > > My questions are this. Since I have hounded doctors > to > > > > > listen to > > > > > > > > me > > > > > > > > > > that something is wrong finally one of them sent me > in > > > for > > > > > all > > > > > > > > these > > > > > > > > > > tests and found the minimal honeycombing on my > lung. He > > > > > said its > > > > > > > > > > minimal and I am not dieing yet nonetheless its > still > > > > > pulmonary > > > > > > > > > > fibrosis and because everyone is so different they > just > > > > > have to > > > > > > > > watch > > > > > > > > > > and see what will happen. I dont think thats right > > > because > > > > > what > > > > > > I > > > > > > > > have > > > > > > > > > > read is that once it goes into advanced stage there > is > > > > > nothing > > > > > > > > they > > > > > > > > & g t; can > > > > > > > > > > do because there is no cure. What should I be doing > now? > > > > > > > > > > > > > > > > > > > > Thanks so much > > > > > > > > > > > > > > > > > > > > Sandie > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >------------------------------------------------------------- -- > ---- > > > ----- > > > > > > > > > >No virus found in this incoming message. > > > > >Checked by AVG Free Edition. > > > > >Version: 7.5.488 / Virus Database: 269.14.10/1070 - Release > Date: > > > 10/14/2007 9:22 AM > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 15, 2007 I hear your desparation and it brings tears. However, I hear also you saying you have no choice. Not to be argumentative but I would encourage you to explore choices carefully. They may be drastic. But the world's smallest apartment and health beats any house. I know we preach financial responsibility but health is also more important that paying any debts. Consider any local programs or federal that might help you. Talk to the public hospital there. Just do anything possible for yourself. I speak from experience as I kept saying I had to have this and to have it I had to have this job and I had to work 65 hours per week and I ended up in bad shape in many ways having to have things I really didn't have to have. My life is much simpler now and certainly low budget and may become more so soon. But I almost killed myself physically, mentally and emotionally before I wised up. I also couldn't have survived without counseling and I know some are insulted when its recommended. However, going through what you have and what you are and what you face, and knowing how I couldn't have survived without it, I also would ask you to consider it if you haven't already done so. I hear so much pain and desparation and anger and determination but I hear one person trying to do more than is humanly possible to survive. I tried.....I was the best at everything. Took on every responsibility there was. I destroyed my well being in the process. > > > > > > > & g t ; > > > > > > > > > > > > Hi all, > > > > > > > > > > > > > > > > > > > > My name is Sandie and I was just diagnosed with > > > Pulmonary > > > > > > > > Fibrosis, > > > > > > > > > > waiting to go to the Mayo Clinic because I also > have RA > > > and > > > > > I am > > > > > > > > > unable > > > > > > > > > > to fight off infections. I am 36 years old. > > > > > > > > > > > > > > > > > > > > My questions are this. Since I have hounded doctors > to > > > > > listen to > > > > > > > > me > > > > > > > > > > that something is wrong finally one of them sent me > in > > > for > > > > > all > > > > > > > > these > > > > > > > > > > tests and found the minimal honeycombing on my > lung. He > > > > > said its > > > > > > > > > > minimal and I am not dieing yet nonetheless its > still > > > > > pulmonary > > > > > > > > > > fibrosis and because everyone is so different they > just > > > > > have to > > > > > > > > watch > > > > > > > > > > and see what will happen. I dont think thats right > > > because > > > > > what > > > > > > I > > > > > > > > have > > > > > > > > > > read is that once it goes into advanced stage there > is > > > > > nothing > > > > > > > > they > > > > > > > > & g t; can > > > > > > > > > > do because there is no cure. What should I be doing > now? > > > > > > > > > > > > > > > > > > > > Thanks so much > > > > > > > > > > > > > > > > > > > > Sandie > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >------------------------------------------------------------- -- > ---- > > > ----- > > > > > > > > > >No virus found in this incoming message. > > > > >Checked by AVG Free Edition. > > > > >Version: 7.5.488 / Virus Database: 269.14.10/1070 - Release > Date: > > > 10/14/2007 9:22 AM > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 15, 2007 I hear your desparation and it brings tears. However, I hear also you saying you have no choice. Not to be argumentative but I would encourage you to explore choices carefully. They may be drastic. But the world's smallest apartment and health beats any house. I know we preach financial responsibility but health is also more important that paying any debts. Consider any local programs or federal that might help you. Talk to the public hospital there. Just do anything possible for yourself. I speak from experience as I kept saying I had to have this and to have it I had to have this job and I had to work 65 hours per week and I ended up in bad shape in many ways having to have things I really didn't have to have. My life is much simpler now and certainly low budget and may become more so soon. But I almost killed myself physically, mentally and emotionally before I wised up. I also couldn't have survived without counseling and I know some are insulted when its recommended. However, going through what you have and what you are and what you face, and knowing how I couldn't have survived without it, I also would ask you to consider it if you haven't already done so. I hear so much pain and desparation and anger and determination but I hear one person trying to do more than is humanly possible to survive. I tried.....I was the best at everything. Took on every responsibility there was. I destroyed my well being in the process. > > > > > > > & g t ; > > > > > > > > > > > > Hi all, > > > > > > > > > > > > > > > > > > > > My name is Sandie and I was just diagnosed with > > > Pulmonary > > > > > > > > Fibrosis, > > > > > > > > > > waiting to go to the Mayo Clinic because I also > have RA > > > and > > > > > I am > > > > > > > > > unable > > > > > > > > > > to fight off infections. I am 36 years old. > > > > > > > > > > > > > > > > > > > > My questions are this. Since I have hounded doctors > to > > > > > listen to > > > > > > > > me > > > > > > > > > > that something is wrong finally one of them sent me > in > > > for > > > > > all > > > > > > > > these > > > > > > > > > > tests and found the minimal honeycombing on my > lung. He > > > > > said its > > > > > > > > > > minimal and I am not dieing yet nonetheless its > still > > > > > pulmonary > > > > > > > > > > fibrosis and because everyone is so different they > just > > > > > have to > > > > > > > > watch > > > > > > > > > > and see what will happen. I dont think thats right > > > because > > > > > what > > > > > > I > > > > > > > > have > > > > > > > > > > read is that once it goes into advanced stage there > is > > > > > nothing > > > > > > > > they > > > > > > > > & g t; can > > > > > > > > > > do because there is no cure. What should I be doing > now? > > > > > > > > > > > > > > > > > > > > Thanks so much > > > > > > > > > > > > > > > > > > > > Sandie > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >------------------------------------------------------------- -- > ---- > > > ----- > > > > > > > > > >No virus found in this incoming message. > > > > >Checked by AVG Free Edition. > > > > >Version: 7.5.488 / Virus Database: 269.14.10/1070 - Release > Date: > > > 10/14/2007 9:22 AM > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 15, 2007 Sandie, It is always so easy to tell someone else what to do. I'm so sorry for your pain and your heartache. I always say there is someone somewhere sticking pins into a little voodoo doll with my name on it. Sounds like someone out there has one with your name on it too. Life doesn't always turn out as we planned. We realize this only when we get there. So, I will revise my advise....just try and cut back and do the best you can. God seems to give us just enough energy to get through each day. May he be with you in your struggles. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. > > > > > > > & g t ; > >> > > > > > > > > > Hi all,> > > > > > > > > >> > > > > > > > > > My name is Sandie and I was just diagnosed with> > > Pulmonary> > > > > > > > Fibrosis,> > > > > > > > > > waiting to go to the Mayo Clinic because I also > have RA> > > and> > > > > I am> > > > > > > > > unable> > > > > > > > > > to fight off infections. I am 36 years old.> > > > > > > > > >> > > > > > > > > > My questions are this. Since I have hounded doctors > to> > > > > listen to> > > > > > > > me> > > > > > > > > > that something is wrong finally one of them sent me > in> > > for> > > > > all> > > > > > > > these> > > > > > > > > > tests and found the minimal honeycombing on my > lung. He> > > > > said its> > > > > > > > > > minimal and I am not dieing yet nonetheless its > still> > > > > pulmonary> > > > > > > > > > fibrosis and because everyone is so different they > just> > > > > have to> > > > > > > > watch> > > > > > > > > > and see what will happen. I dont think thats right> > > because> > > > > what> > > > > > I> > > > > > > > have> > > > > > > > > > read is that once it goes into advanced stage there > is> > > > > nothing> > > > > > > > they> > > > > > > > & g t; can> > > > > > > > > > do because there is no cure. What should I be doing > now?> > > > > > > > > >> > > > > > > > > > Thanks so much> > > > > > > > > >> > > > > > > > > > Sandie> > > > > > > > > >> > > > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > >> > > > >> > > > >> > > > >---------------------------------------------------------------> ----> > > -----> > > > >> > > > >No virus found in this incoming message.> > > > >Checked by AVG Free Edition.> > > > >Version: 7.5.488 / Virus Database: 269.14.10/1070 - Release > Date:> > > 10/14/2007 9:22 AM> > > > >> > > > >> > > >> > >> >> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 15, 2007 Sandie, It is always so easy to tell someone else what to do. I'm so sorry for your pain and your heartache. I always say there is someone somewhere sticking pins into a little voodoo doll with my name on it. Sounds like someone out there has one with your name on it too. Life doesn't always turn out as we planned. We realize this only when we get there. So, I will revise my advise....just try and cut back and do the best you can. God seems to give us just enough energy to get through each day. May he be with you in your struggles. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. > > > > > > > & g t ; > >> > > > > > > > > > Hi all,> > > > > > > > > >> > > > > > > > > > My name is Sandie and I was just diagnosed with> > > Pulmonary> > > > > > > > Fibrosis,> > > > > > > > > > waiting to go to the Mayo Clinic because I also > have RA> > > and> > > > > I am> > > > > > > > > unable> > > > > > > > > > to fight off infections. I am 36 years old.> > > > > > > > > >> > > > > > > > > > My questions are this. Since I have hounded doctors > to> > > > > listen to> > > > > > > > me> > > > > > > > > > that something is wrong finally one of them sent me > in> > > for> > > > > all> > > > > > > > these> > > > > > > > > > tests and found the minimal honeycombing on my > lung. He> > > > > said its> > > > > > > > > > minimal and I am not dieing yet nonetheless its > still> > > > > pulmonary> > > > > > > > > > fibrosis and because everyone is so different they > just> > > > > have to> > > > > > > > watch> > > > > > > > > > and see what will happen. I dont think thats right> > > because> > > > > what> > > > > > I> > > > > > > > have> > > > > > > > > > read is that once it goes into advanced stage there > is> > > > > nothing> > > > > > > > they> > > > > > > > & g t; can> > > > > > > > > > do because there is no cure. What should I be doing > now?> > > > > > > > > >> > > > > > > > > > Thanks so much> > > > > > > > > >> > > > > > > > > > Sandie> > > > > > > > > >> > > > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > >> > > > >> > > > >> > > > >---------------------------------------------------------------> ----> > > -----> > > > >> > > > >No virus found in this incoming message.> > > > >Checked by AVG Free Edition.> > > > >Version: 7.5.488 / Virus Database: 269.14.10/1070 - Release > Date:> > > 10/14/2007 9:22 AM> > > > >> > > > >> > > >> > >> >> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 15, 2007 Sandie, It is always so easy to tell someone else what to do. I'm so sorry for your pain and your heartache. I always say there is someone somewhere sticking pins into a little voodoo doll with my name on it. Sounds like someone out there has one with your name on it too. Life doesn't always turn out as we planned. We realize this only when we get there. So, I will revise my advise....just try and cut back and do the best you can. God seems to give us just enough energy to get through each day. May he be with you in your struggles. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. > > > > > > > & g t ; > >> > > > > > > > > > Hi all,> > > > > > > > > >> > > > > > > > > > My name is Sandie and I was just diagnosed with> > > Pulmonary> > > > > > > > Fibrosis,> > > > > > > > > > waiting to go to the Mayo Clinic because I also > have RA> > > and> > > > > I am> > > > > > > > > unable> > > > > > > > > > to fight off infections. I am 36 years old.> > > > > > > > > >> > > > > > > > > > My questions are this. Since I have hounded doctors > to> > > > > listen to> > > > > > > > me> > > > > > > > > > that something is wrong finally one of them sent me > in> > > for> > > > > all> > > > > > > > these> > > > > > > > > > tests and found the minimal honeycombing on my > lung. He> > > > > said its> > > > > > > > > > minimal and I am not dieing yet nonetheless its > still> > > > > pulmonary> > > > > > > > > > fibrosis and because everyone is so different they > just> > > > > have to> > > > > > > > watch> > > > > > > > > > and see what will happen. I dont think thats right> > > because> > > > > what> > > > > > I> > > > > > > > have> > > > > > > > > > read is that once it goes into advanced stage there > is> > > > > nothing> > > > > > > > they> > > > > > > > & g t; can> > > > > > > > > > do because there is no cure. What should I be doing > now?> > > > > > > > > >> > > > > > > > > > Thanks so much> > > > > > > > > >> > > > > > > > > > Sandie> > > > > > > > > >> > > > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > >> > > > >> > > > >> > > > >---------------------------------------------------------------> ----> > > -----> > > > >> > > > >No virus found in this incoming message.> > > > >Checked by AVG Free Edition.> > > > >Version: 7.5.488 / Virus Database: 269.14.10/1070 - Release > Date:> > > 10/14/2007 9:22 AM> > > > >> > > > >> > > >> > >> >> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 23, 2007 I will did you get in on your own or did you get referred there? How long did it take for you to get in there? Sandie > > > & g t ; > > > > > > > > Hi all, > > > > > > > > > > > > My name is Sandie and I was just diagnosed with Pulmonary > > > > Fibrosis, > > > > > > waiting to go to the Mayo Clinic because I also have RA and > I am > > > > > unable > > > > > > to fight off infections. I am 36 years old. > > > > > > > > > > > > My questions are this. Since I have hounded doctors to > listen to > > > > me > > > > > > that something is wrong finally one of them sent me in for > all > > > > these > > > > > > tests and found the minimal honeycombing on my lung. He > said its > > > > > > minimal and I am not dieing yet nonetheless its still > pulmonary > > > > > > fibrosis and because everyone is so different they just > have to > > > > watch > > > > > > and see what will happen. I dont think thats right because > what > > I > > > > have > > > > > > read is that once it goes into advanced stage there is > nothing > > > > they > > > > & g t; can > > > > > > do because there is no cure. What should I be doing now? > > > > > > > > > > > > Thanks so much > > > > > > > > > > > > Sandie > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 23, 2007 I will did you get in on your own or did you get referred there? How long did it take for you to get in there? Sandie > > > & g t ; > > > > > > > > Hi all, > > > > > > > > > > > > My name is Sandie and I was just diagnosed with Pulmonary > > > > Fibrosis, > > > > > > waiting to go to the Mayo Clinic because I also have RA and > I am > > > > > unable > > > > > > to fight off infections. I am 36 years old. > > > > > > > > > > > > My questions are this. Since I have hounded doctors to > listen to > > > > me > > > > > > that something is wrong finally one of them sent me in for > all > > > > these > > > > > > tests and found the minimal honeycombing on my lung. He > said its > > > > > > minimal and I am not dieing yet nonetheless its still > pulmonary > > > > > > fibrosis and because everyone is so different they just > have to > > > > watch > > > > > > and see what will happen. I dont think thats right because > what > > I > > > > have > > > > > > read is that once it goes into advanced stage there is > nothing > > > > they > > > > & g t; can > > > > > > do because there is no cure. What should I be doing now? > > > > > > > > > > > > Thanks so much > > > > > > > > > > > > Sandie > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 23, 2007 he saw a specialist locally in December - went to the Mayo Clinic in Jan & had the OLB in Feb - it went really fast - we have been going there for a couple of years & just got listed on 8/10/07 for a transplant. We also did a clinical trial there, but they also don't have any treatment for IPF. Kim & Tom Re: New I will did you get in on your own or did you get referred there? How long did it take for you to get in there?Sandie > > > & g t ; > >> > > > > > Hi all,> > > > > >> > > > > > My name is Sandie and I was just diagnosed with Pulmonary> > > > Fibrosis,> > > > > > waiting to go to the Mayo Clinic because I also have RA and > I am> > > > > unable> > > > > > to fight off infections. I am 36 years old.> > > > > >> > > > > > My questions are this. Since I have hounded doctors to > listen to> > > > me> > > > > > that something is wrong finally one of them sent me in for > all> > > > these> > > > > > tests and found the minimal honeycombing on my lung. He > said its> > > > > > minimal and I am not dieing yet nonetheless its still > pulmonary> > > > > > fibrosis and because everyone is so different they just > have to> > > > watch> > > > > > and see what will happen. I dont think thats right because > what> > I> > > > have> > > > > > read is that once it goes into advanced stage there is > nothing> > > > they> > > > & g t; can> > > > > > do because there is no cure. What should I be doing now?> > > > > >> > > > > > Thanks so much> > > > > >> > > > > > Sandie> > > > > >> > > > >> > > >> > >> >> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 23, 2007 he saw a specialist locally in December - went to the Mayo Clinic in Jan & had the OLB in Feb - it went really fast - we have been going there for a couple of years & just got listed on 8/10/07 for a transplant. We also did a clinical trial there, but they also don't have any treatment for IPF. Kim & Tom Re: New I will did you get in on your own or did you get referred there? How long did it take for you to get in there?Sandie > > > & g t ; > >> > > > > > Hi all,> > > > > >> > > > > > My name is Sandie and I was just diagnosed with Pulmonary> > > > Fibrosis,> > > > > > waiting to go to the Mayo Clinic because I also have RA and > I am> > > > > unable> > > > > > to fight off infections. I am 36 years old.> > > > > >> > > > > > My questions are this. Since I have hounded doctors to > listen to> > > > me> > > > > > that something is wrong finally one of them sent me in for > all> > > > these> > > > > > tests and found the minimal honeycombing on my lung. He > said its> > > > > > minimal and I am not dieing yet nonetheless its still > pulmonary> > > > > > fibrosis and because everyone is so different they just > have to> > > > watch> > > > > > and see what will happen. I dont think thats right because > what> > I> > > > have> > > > > > read is that once it goes into advanced stage there is > nothing> > > > they> > > > & g t; can> > > > > > do because there is no cure. What should I be doing now?> > > > > >> > > > > > Thanks so much> > > > > >> > > > > > Sandie> > > > > >> > > > >> > > >> > >> >> Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 23, 2007 he saw a specialist locally in December - went to the Mayo Clinic in Jan & had the OLB in Feb - it went really fast - we have been going there for a couple of years & just got listed on 8/10/07 for a transplant. We also did a clinical trial there, but they also don't have any treatment for IPF. Kim & Tom Re: New I will did you get in on your own or did you get referred there? How long did it take for you to get in there?Sandie > > > & g t ; > >> > > > > > Hi all,> > > > > >> > > > > > My name is Sandie and I was just diagnosed with Pulmonary> > > > Fibrosis,> > > > > > waiting to go to the Mayo Clinic because I also have RA and > I am> > > > > unable> > > > > > to fight off infections. I am 36 years old.> > > > > >> > > > > > My questions are this. Since I have hounded doctors to > listen to> > > > me> > > > > > that something is wrong finally one of them sent me in for > all> > > > these> > > > > > tests and found the minimal honeycombing on my lung. He > said its> > > > > > minimal and I am not dieing yet nonetheless its still > pulmonary> > > > > > fibrosis and because everyone is so different they just > have to> > > > watch> > > > > > and see what will happen. I dont think thats right because > what> > I> > > > have> > > > > > read is that once it goes into advanced stage there is > nothing> > > > they> > > > & g t; can> > > > > > do because there is no cure. What should I be doing now?> > > > > >> > > > > > Thanks so much> > > > > >> > > > > > Sandie> > > > > >> > > > >> > > >> > >> >> Quote Share this post Link to post Share on other sites
