Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Kerry, Thanks so much for that eloquently worded reminder of how differently this disease works on each person. Dilwala's post actually reminded me of you and I was hoping you'd add your 2 cents as you seem to be the person here with the most in common with him. I so admire your strength and courage!! Love, Beth in NC age 48 Fibrotic NSIP 06/06 "For as long as I shall live, I will testify to Love." I'll take that deed Gotta reply here. Public service reminder that there is no absolute in IPF. About the only thing I'm sure of is there's nothing absolute about it. Most doctors and researchers don't agree. Those posting have many things in common, but no 2 have exactly the same path, symptoms, treatments or future. When I first joined this site I spent ages going thru old posts so I could see the discussions of topics that applied to me so I could research what had been said from everyone. I wanted to find the person that most matched my symptoms, my situation, not just what the latest person, the most dominate voice, the newest research. I wanted to see what held up over time, what people came back around to again and again. What they said when they were at their weakest and strongest. You'll see w/ each new wave of folks comes the discussions of VATS, OLB, Prednisone, immunosuppressants, NAC, exercise, cough, SOB, PFTs, rehab, doctors, CT's, causes, cures, treatments, loss, hope, depression, prayer, ILD, IPF, PF, NSIP, COPD, smoking, death, age, etc. Please for anyone new to this site one of the best things to do is click on messages and then type in about any word to search on. So, now I'll take that deed to the Pacific and Hawaii. You absolutely can have PF and have 98% saturation w/ exertion. Call me "TOTALLY INCONSISTENT" !!! Really, I had hoped to always be a medical phenomenon and was happy w/ that. For many, many years I only had an annoying cough. You could say I'm not a text book case, but that's the thing there is no textbook w/ IPF. If you are fit and active that can majorly affect how it presents. Also the human body has an amazing ability to compensate for many, many things. My doctor was always amazed at the level I functioned and that it just didn't affect my life and lifestyle as greatly as it "should" have. There just is no absolute. Everyone is different. I hope that everyone is happy w/ their path, but it is just that their path. If I had become ill as suddenly as others on this board I would have gotten that biopsy and/or done Prednisone, but that just wasn't my case. It took 6 to 10 years to get where anything, but extreme exertion caused my saturation to drop and so I'm very happy that I opted to track my disease w/ PFT's and CT's rather than opening myself up to lung collapse, more scarring and countless other complications that could have made my disease worse sooner rather than later. I could have immediately started on Prednisone and then we would have attributed my "stability" to that instead of me just actually being stable on my own. Then of course I could have worse health because of the Pred or immunos. Just saying that you can't say that VATS or the medications are always the right thing for everyone. I'm just trying to remind folks there are different opinions on this one along w/ everything in this crazy world of IPF. Lastly, to Dilwala VATS or no VATS... the biggest reminder here is there is no doctor that can tell you you've got 6 1/2 months to 2 years. They've told so many on this board that... Check out some of the signoffs for how long people have been diagnosed. 1 year, 5 years, 10 years, 18 years and many of us have had it long before that date. Peggy says it best... there's no expiration date stamped anywhere on me!KerryIPF '01S. IN>> A couple of things....> > If you're maintaining oxygen at 98% even under exertion and have PF > then I will deed the Pacific Ocean over to you, including Hawaii. I > don't mean to be funny, but thats just totally inconsistent. With > your PFT's your oxygen saturation has to be slipping some. Please > check because oxygen isn't just important for shortness of breath. It > protects your organs. If they are pushing for VATS, i just have to > believe you need or are close to needing oxygen at least for > exertion. What did your oxygen levels drop to at night? They did > drop. Everyone's do, even perfectly healthy. You make a dangerous > statement "I'm assuming that both my PC and the Pulmonologist do not > feel the need for it." It's your life and you are your medical > manager. Maybe I'm wrong completely but its a simple way to find out > and I can't imagine with your PFT's that your oxygen doesn't at least > drop to the low 90's on exertion and if it goes below 90 that means > you need oxygen. After all, what do you think gave you the symptoms > to start with? Your oxygen dropping.> > Now your percentages on your PFT's make sense. Don't have any idea > why but normal for Asians is lower than Caucasians. Height makes more > sense to me. > > Now.....I understand not telling the kids until you know for sure. > But, ultimately, honesty with everyone in your life will provide you > such relief and they need it too. Its a long battle and if you can't > communicate in every way, Sharing with your wife was the most > important thing you could have done and while draining will be > freeing to both of you. > > As to what you might or might do different after VATS. With UIP you > might choose not to do Imuran and Prednisone and you might choose to > do them with all others. Or you might do them regardless or not do > them regardless.. ..those are choices you'll make. > > Also, it can effect your choices of clinical trials and it can effect > your life planning. > > One other thing. Take care of all legal matters early and even before > VATS, such as Medical Power of Attorney, Directives, Anything dealing > with death or with incapacitation. Why? Then death is taken care of. > All you have to ever deal with after is life. Making the most of > every remaining moment whether 1 year of 50. These are things you > should have already done anyway.> > As to determining PF without biopsy. You can determine PF in general. > However, the accuracy of which kind is only about 60%. Early its > less, later its greater. The accuracy with VATS is around 97%. Insist > the biopsies are read by more than one radiologist too. Mine were > also sent to Mayo Clinic.> > VATS may technically and as far as potential death be the simplest > thing he does. But to you its invasive and can have complications and > is likely to leave you with some residual pain. Its invasive to have > three pieces of your lung taken. So while I'd do it again, don't > underestimate it, but don't overestimate it either. > > As to Imuran and Prednisone without VATS. Yes, one can just assume PF > and do that. But understand Prednisone isn't a mild drug. And, having > a VATS while you're strong instead of later is better. Plus you'll > need it if you consider a biopsy. Now, if you're going to have a VATS > you would not do Prednisone before as it weakens your immune system.> > Well, I'm so glad you came here. I know its overwhelming, but you're > doing an excellent job of learning and listening. We try to be > completely honest and don't mince words. Always feel free to ask or > say anything. We're sorry you have to be here but welcome you to our > Air Family. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Kerry, well said. I am so glad you are here. I just love you. If you are up to it check on the Queen for us from time to time. Thanks.Love and Prayers, Peggyipf 6/04Worry looks around.Sorry looks back,Faith looks up. Kerry,Thanks so much for that eloquently worded reminder of how differently this disease works on each person. Dilwala's post actually reminded me of you and I was hoping you'd add your 2 cents as you seem to be the person here with the most in common with him. I so admire your strength and courage!! Love, Beth in NC age 48 Fibrotic NSIP 06/06 "For as long as I shall live, I will testify to Love." I'll take that deedGotta reply here. Public service reminder that there is no absolute in IPF. About the only thing I'm sure of is there's nothing absolute about it. Most doctors and researchers don't agree. Those posting have many things in common, but no 2 have exactly the same path, symptoms, treatments or future. When I first joined this site I spent ages going thru old posts so I could see the discussions of topics that applied to me so I could research what had been said from everyone. I wanted to find the person that most matched my symptoms, my situation, not just what the latest person, the most dominate voice, the newest research. I wanted to see what held up over time, what people came back around to again and again. What they said when they were at their weakest and strongest. You'll see w/ each new wave of folks comes the discussions of VATS, OLB, Prednisone, immunosuppressants, NAC, exercise, cough, SOB, PFTs, rehab, doctors, CT's, causes, cures, treatments, loss, hope, depression, prayer, ILD, IPF, PF, NSIP, COPD, smoking, death, age, etc. Please for anyone new to this site one of the best things to do is click on messages and then type in about any word to search on. So, now I'll take that deed to the Pacific and Hawaii. You absolutely can have PF and have 98% saturation w/ exertion. Call me "TOTALLY INCONSISTENT" !!! Really, I had hoped to always be a medical phenomenon and was happy w/ that. For many, many years I only had an annoying cough. You could say I'm not a text book case, but that's the thing there is no textbook w/ IPF. If you are fit and active that can majorly affect how it presents. Also the human body has an amazing ability to compensate for many, many things. My doctor was always amazed at the level I functioned and that it just didn't affect my life and lifestyle as greatly as it "should" have. There just is no absolute. Everyone is different. I hope that everyone is happy w/ their path, but it is just that their path. If I had become ill as suddenly as others on this board I would have gotten that biopsy and/or done Prednisone, but that just wasn't my case. It took 6 to 10 years to get where anything, but extreme exertion caused my saturation to drop and so I'm very happy that I opted to track my disease w/ PFT's and CT's rather than opening myself up to lung collapse, more scarring and countless other complications that could have made my disease worse sooner ratherthan later. I could have immediately started on Prednisone and thenwe would have attributed my "stability" to that instead of me just actually being stable on my own. Then of course I could have worse health because of the Pred or immunos. Just saying that you can't say that VATS or the medications are always the right thing for everyone. I'm just trying to remind folks there are different opinions on this one along w/ everything in this crazy world of IPF. Lastly, to Dilwala VATS or no VATS... the biggest reminder here is there is no doctor that can tell you you've got 6 1/2 months to 2 years. They've told so many on this board that... Check out some of the signoffs for how long people have been diagnosed. 1 year, 5 years, 10 years, 18 years and many of us have had it long before that date. Peggy says it best... there's no expiration date stamped anywhere on me!KerryIPF '01S. IN>> A couple of things....> > If you're maintaining oxygen at 98% even under exertion and havePF > then I will deed the Pacific Ocean over to you, including Hawaii. I > don't mean to be funny, but thats just totally inconsistent. With > your PFT's your oxygen saturation has to be slipping some. Please> check because oxygen isn't just important for shortness of breath. It > protects your organs. If they are pushing for VATS, i just have to > believe you need or are close to needing oxygen at least for > exertion. What did your oxygen levels drop to at night? They did > drop. Everyone's do, even perfectly healthy. You make a dangerous > statement "I'm assuming that both my PC and the Pulmonologist do not > feel the need for it." It's your life and you are your medical > manager. Maybe I'm wrong completely but its a simple way to findout > and I can't imagine with your PFT's that your oxygen doesn't at least > drop to the low 90's on exertion and if it goes below 90 that means > you need oxygen. After all, what do you think gave you the symptoms > to start with? Your oxygen dropping.> > Now your percentages on your PFT's make sense. Don't have any idea > why but normal for Asians is lower than Caucasians. Height makes more > sense to me. > > Now.....I understand not telling the kids until you know for sure. > But, ultimately, honesty with everyone in your life will provide you > such relief and they need it too. Its a long battle and if you can't > communicate in every way, Sharing with your wife was the most > important thing you could have done and while draining will be > freeing to both of you. > > As to what you might or might do different after VATS. With UIP you > might choose not to do Imuran and Prednisone and you might choose to > do them with all others. Or you might do them regardless or not do > them regardless.. ..those are choices you'll make. > > Also, it can effect your choices of clinical trials and it can effect > your life planning. > > One other thing. Take care of all legal matters early and even before > VATS, such as Medical Power of Attorney, Directives, Anything dealing > with death or with incapacitation. Why? Then death is taken care of. > All you have to ever deal with after is life. Making the most of > every remaining moment whether 1 year of 50. These are things you > should have already done anyway.> > As to determining PF without biopsy. You can determine PF in general. > However, the accuracy of which kind is only about 60%. Early its > less, later its greater. The accuracy with VATS is around 97%. Insist > the biopsies are read by more than one radiologist too. Mine were> also sent to Mayo Clinic.> > VATS may technically and as far as potential death be the simplest> thing he does. But to you its invasive and can have complications and > is likely to leave you with some residual pain. Its invasive to have > three pieces of your lung taken. So while I'd do it again, don't > underestimate it, but don't overestimate it either. > > As to Imuran and Prednisone without VATS. Yes, one can just assume PF > and do that. But understand Prednisone isn't a mild drug. And, having > a VATS while you're strong instead of later is better. Plus you'll > need it if you consider a biopsy. Now, if you're going to have a VATS > you would not do Prednisone before as it weakens your immune system.> > Well, I'm so glad you came here. I know its overwhelming, but you're > doing an excellent job of learning and listening. We try to be > completely honest and don't mince words. Always feel free to ask or > say anything. We're sorry you have to be here but welcome you to our > Air Family. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Kerry I didn't mean to imply any absolutes about how the disease behaves except surprise that one would get to the point of VATS and have never been tested for their oxygen saturation under exertion. I'm not saying it necessarily drops to the point of needing oxygen, but he does report some extreme sob under certain conditions so I would just think a simple non-invasive check of his sats under exertion would be appropriate. If you had PF and 98% saturation under exertion then it does surprise me, but at least your saturation was checked. And his symptom isn't just a cough, it is extreme sob under certain conditions. We all do need reminders of no absolutes and I think most of all the pulmonologists do as they often present it one way with no choices to be made. So, no absolute on how it behaves. But, I will stick with the opinion a check of sats under exertion is appropriate. > > > > A couple of things.... > > > > If you're maintaining oxygen at 98% even under exertion and have > PF > > then I will deed the Pacific Ocean over to you, including Hawaii. > I > > don't mean to be funny, but thats just totally inconsistent. With > > your PFT's your oxygen saturation has to be slipping some. Please > > check because oxygen isn't just important for shortness of breath. > It > > protects your organs. If they are pushing for VATS, i just have to > > believe you need or are close to needing oxygen at least for > > exertion. What did your oxygen levels drop to at night? They did > > drop. Everyone's do, even perfectly healthy. You make a dangerous > > statement " I'm assuming that both my PC and the Pulmonologist do > not > > feel the need for it. " It's your life and you are your medical > > manager. Maybe I'm wrong completely but its a simple way to find > out > > and I can't imagine with your PFT's that your oxygen doesn't at > least > > drop to the low 90's on exertion and if it goes below 90 that > means > > you need oxygen. After all, what do you think gave you the > symptoms > > to start with? Your oxygen dropping. > > > > Now your percentages on your PFT's make sense. Don't have any idea > > why but normal for Asians is lower than Caucasians. Height makes > more > > sense to me. > > > > Now.....I understand not telling the kids until you know for sure. > > But, ultimately, honesty with everyone in your life will provide > you > > such relief and they need it too. Its a long battle and if you > can't > > communicate in every way, Sharing with your wife was the most > > important thing you could have done and while draining will be > > freeing to both of you. > > > > As to what you might or might do different after VATS. With UIP > you > > might choose not to do Imuran and Prednisone and you might choose > to > > do them with all others. Or you might do them regardless or not do > > them regardless....those are choices you'll make. > > > > Also, it can effect your choices of clinical trials and it can > effect > > your life planning. > > > > One other thing. Take care of all legal matters early and even > before > > VATS, such as Medical Power of Attorney, Directives, Anything > dealing > > with death or with incapacitation. Why? Then death is taken care > of. > > All you have to ever deal with after is life. Making the most of > > every remaining moment whether 1 year of 50. These are things you > > should have already done anyway. > > > > As to determining PF without biopsy. You can determine PF in > general. > > However, the accuracy of which kind is only about 60%. Early its > > less, later its greater. The accuracy with VATS is around 97%. > Insist > > the biopsies are read by more than one radiologist too. Mine were > > also sent to Mayo Clinic. > > > > VATS may technically and as far as potential death be the simplest > > thing he does. But to you its invasive and can have complications > and > > is likely to leave you with some residual pain. Its invasive to > have > > three pieces of your lung taken. So while I'd do it again, don't > > underestimate it, but don't overestimate it either. > > > > As to Imuran and Prednisone without VATS. Yes, one can just assume > PF > > and do that. But understand Prednisone isn't a mild drug. And, > having > > a VATS while you're strong instead of later is better. Plus you'll > > need it if you consider a biopsy. Now, if you're going to have a > VATS > > you would not do Prednisone before as it weakens your immune > system. > > > > Well, I'm so glad you came here. I know its overwhelming, but > you're > > doing an excellent job of learning and listening. We try to be > > completely honest and don't mince words. Always feel free to ask > or > > say anything. We're sorry you have to be here but welcome you to > our > > Air Family. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Ya, ya, ya... no backpeddling... you offered it in writing... I want the deed! I'll need it once I'm all fixed up w/ new lungs. Kerry IPF '01 S. IN > > > > > > A couple of things.... > > > > > > If you're maintaining oxygen at 98% even under exertion and have > > PF > > > then I will deed the Pacific Ocean over to you, including Hawaii. > > I > > > don't mean to be funny, but thats just totally inconsistent. With > > > your PFT's your oxygen saturation has to be slipping some. Please > > > check because oxygen isn't just important for shortness of > breath. > > It > > > protects your organs. If they are pushing for VATS, i just have > to > > > believe you need or are close to needing oxygen at least for > > > exertion. What did your oxygen levels drop to at night? They did > > > drop. Everyone's do, even perfectly healthy. You make a dangerous > > > statement " I'm assuming that both my PC and the Pulmonologist do > > not > > > feel the need for it. " It's your life and you are your medical > > > manager. Maybe I'm wrong completely but its a simple way to find > > out > > > and I can't imagine with your PFT's that your oxygen doesn't at > > least > > > drop to the low 90's on exertion and if it goes below 90 that > > means > > > you need oxygen. After all, what do you think gave you the > > symptoms > > > to start with? Your oxygen dropping. > > > > > > Now your percentages on your PFT's make sense. Don't have any > idea > > > why but normal for Asians is lower than Caucasians. Height makes > > more > > > sense to me. > > > > > > Now.....I understand not telling the kids until you know for > sure. > > > But, ultimately, honesty with everyone in your life will provide > > you > > > such relief and they need it too. Its a long battle and if you > > can't > > > communicate in every way, Sharing with your wife was the most > > > important thing you could have done and while draining will be > > > freeing to both of you. > > > > > > As to what you might or might do different after VATS. With UIP > > you > > > might choose not to do Imuran and Prednisone and you might choose > > to > > > do them with all others. Or you might do them regardless or not > do > > > them regardless....those are choices you'll make. > > > > > > Also, it can effect your choices of clinical trials and it can > > effect > > > your life planning. > > > > > > One other thing. Take care of all legal matters early and even > > before > > > VATS, such as Medical Power of Attorney, Directives, Anything > > dealing > > > with death or with incapacitation. Why? Then death is taken care > > of. > > > All you have to ever deal with after is life. Making the most of > > > every remaining moment whether 1 year of 50. These are things you > > > should have already done anyway. > > > > > > As to determining PF without biopsy. You can determine PF in > > general. > > > However, the accuracy of which kind is only about 60%. Early its > > > less, later its greater. The accuracy with VATS is around 97%. > > Insist > > > the biopsies are read by more than one radiologist too. Mine were > > > also sent to Mayo Clinic. > > > > > > VATS may technically and as far as potential death be the > simplest > > > thing he does. But to you its invasive and can have complications > > and > > > is likely to leave you with some residual pain. Its invasive to > > have > > > three pieces of your lung taken. So while I'd do it again, don't > > > underestimate it, but don't overestimate it either. > > > > > > As to Imuran and Prednisone without VATS. Yes, one can just > assume > > PF > > > and do that. But understand Prednisone isn't a mild drug. And, > > having > > > a VATS while you're strong instead of later is better. Plus > you'll > > > need it if you consider a biopsy. Now, if you're going to have a > > VATS > > > you would not do Prednisone before as it weakens your immune > > system. > > > > > > Well, I'm so glad you came here. I know its overwhelming, but > > you're > > > doing an excellent job of learning and listening. We try to be > > > completely honest and don't mince words. Always feel free to ask > > or > > > say anything. We're sorry you have to be here but welcome you to > > our > > > Air Family. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Beth, I think that you and I are perfect examples of the extremes of how this can show up. Anytime, I want to say I wouldn't do Pred or biopsy I quickly think " unless I was in Beth's shoes " . When I read Dilwala's post I thought of me too, I guess w/ the sports and the coaching it's hard not to make the connection. Glad things are going so good for you w/ the new place and with the exciting visit soon w/ Leanne and Peggy. Have a great visit. Kerry IPF '01 S. IN > > > > A couple of things.... > > > > If you're maintaining oxygen at 98% even under exertion and have > PF > > then I will deed the Pacific Ocean over to you, including Hawaii. > I > > don't mean to be funny, but thats just totally inconsistent. With > > your PFT's your oxygen saturation has to be slipping some. Please > > check because oxygen isn't just important for shortness of breath. > It > > protects your organs. If they are pushing for VATS, i just have to > > believe you need or are close to needing oxygen at least for > > exertion. What did your oxygen levels drop to at night? They did > > drop. Everyone's do, even perfectly healthy. You make a dangerous > > statement " I'm assuming that both my PC and the Pulmonologist do > not > > feel the need for it. " It's your life and you are your medical > > manager. Maybe I'm wrong completely but its a simple way to find > out > > and I can't imagine with your PFT's that your oxygen doesn't at > least > > drop to the low 90's on exertion and if it goes below 90 that > means > > you need oxygen. After all, what do you think gave you the > symptoms > > to start with? Your oxygen dropping. > > > > Now your percentages on your PFT's make sense. Don't have any idea > > why but normal for Asians is lower than Caucasians. Height makes > more > > sense to me. > > > > Now.....I understand not telling the kids until you know for sure. > > But, ultimately, honesty with everyone in your life will provide > you > > such relief and they need it too. Its a long battle and if you > can't > > communicate in every way, Sharing with your wife was the most > > important thing you could have done and while draining will be > > freeing to both of you. > > > > As to what you might or might do different after VATS. With UIP > you > > might choose not to do Imuran and Prednisone and you might choose > to > > do them with all others. Or you might do them regardless or not do > > them regardless.. ..those are choices you'll make. > > > > Also, it can effect your choices of clinical trials and it can > effect > > your life planning. > > > > One other thing. Take care of all legal matters early and even > before > > VATS, such as Medical Power of Attorney, Directives, Anything > dealing > > with death or with incapacitation. Why? Then death is taken care > of. > > All you have to ever deal with after is life. Making the most of > > every remaining moment whether 1 year of 50. These are things you > > should have already done anyway. > > > > As to determining PF without biopsy. You can determine PF in > general. > > However, the accuracy of which kind is only about 60%. Early its > > less, later its greater. The accuracy with VATS is around 97%. > Insist > > the biopsies are read by more than one radiologist too. Mine were > > also sent to Mayo Clinic. > > > > VATS may technically and as far as potential death be the simplest > > thing he does. But to you its invasive and can have complications > and > > is likely to leave you with some residual pain. Its invasive to > have > > three pieces of your lung taken. So while I'd do it again, don't > > underestimate it, but don't overestimate it either. > > > > As to Imuran and Prednisone without VATS. Yes, one can just assume > PF > > and do that. But understand Prednisone isn't a mild drug. And, > having > > a VATS while you're strong instead of later is better. Plus you'll > > need it if you consider a biopsy. Now, if you're going to have a > VATS > > you would not do Prednisone before as it weakens your immune > system. > > > > Well, I'm so glad you came here. I know its overwhelming, but > you're > > doing an excellent job of learning and listening. We try to be > > completely honest and don't mince words. Always feel free to ask > or > > say anything. We're sorry you have to be here but welcome you to > our > > Air Family. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Well said 'cause I used your saying! We were a good tag team w/ Joyce. I tried to check on her in between you and Leanne (checking posts in between so we didn't make her talk too much). I won't be able to check on Joyce this week because I'll be busy getting checked myself. This week is my eval. in Indy. I'll be eavesdropping for the prayers from Florida. Love you too! Kerry > Kerry, well said. I am so glad you are here. I just love you. If you > are up to it check on the Queen for us from time to time. > Thanks. > > Love and Prayers, Peggy > ipf 6/04 > > Worry looks around. > Sorry looks back, > Faith looks up. > > > > > > > Kerry, > Thanks so much for that eloquently worded reminder of how differently > this disease works on each person. Dilwala's post actually reminded > me of you and I was hoping you'd add your 2 cents as you seem to be > the person here with the most in common with him. > > I so admire your strength and courage!! > > Love, > > Beth in NC age 48 Fibrotic NSIP 06/06 > > " For as long as I shall live, I will testify to Love. " > > > > > I'll take that deed > > Gotta reply here. Public service reminder that there is no absolute > in IPF. About the only thing I'm sure of is there's nothing > absolute about it. Most doctors and researchers don't agree. Those > posting have many things in common, but no 2 have exactly the same > path, symptoms, treatments or future. > > When I first joined this site I spent ages going thru old posts so I > could see the discussions of topics that applied to me so I could > research what had been said from everyone. I wanted to find the > person that most matched my symptoms, my situation, not just what > the latest person, the most dominate voice, the newest research. I > wanted to see what held up over time, what people came back around > to again and again. What they said when they were at their weakest > and strongest. You'll see w/ each new wave of folks comes the > discussions of VATS, OLB, Prednisone, immunosuppressants, NAC, > exercise, cough, SOB, PFTs, rehab, doctors, CT's, causes, cures, > treatments, loss, hope, depression, prayer, ILD, IPF, PF, NSIP, > COPD, smoking, death, age, etc. Please for anyone new to this site > one of the best things to do is click on messages and then type in > about any word to search on. > > So, now I'll take that deed to the Pacific and Hawaii. You > absolutely can have PF and have 98% saturation w/ exertion. Call > me " TOTALLY INCONSISTENT " !!! Really, I had hoped to always be a > medical phenomenon and was happy w/ that. For many, many years I > only had an annoying cough. You could say I'm not a text book case, > but that's the thing there is no textbook w/ IPF. If you are fit > and active that can majorly affect how it presents. Also the human > body has an amazing ability to compensate for many, many things. My > doctor was always amazed at the level I functioned and that it just > didn't affect my life and lifestyle as greatly as it " should " have. > There just is no absolute. Everyone is different. I hope that > everyone is happy w/ their path, but it is just that their path. If > I had become ill as suddenly as others on this board I would have > gotten that biopsy and/or done Prednisone, but that just wasn't my > case. It took 6 to 10 years to get where anything, but extreme > exertion caused my saturation to drop and so I'm very happy that I > opted to track my disease w/ PFT's and CT's rather than opening > myself up to lung collapse, more scarring and countless other > complications that could have made my disease worse sooner rather > than later. I could have immediately started on Prednisone and then > we would have attributed my " stability " to that instead of me just > actually being stable on my own. Then of course I could have worse > health because of the Pred or immunos. Just saying that you can't > say that VATS or the medications are always the right thing for > everyone. I'm just trying to remind folks there are different > opinions on this one along w/ everything in this crazy world of > IPF. > > Lastly, to Dilwala VATS or no VATS... the biggest reminder here is > there is no doctor that can tell you you've got 6 1/2 months to 2 > years. They've told so many on this board that... Check out some > of the signoffs for how long people have been diagnosed. 1 year, 5 > years, 10 years, 18 years and many of us have had it long before > that date. Peggy says it best... there's no expiration date stamped > anywhere on me! > > Kerry > IPF '01 > S. IN > > > > > > A couple of things.... > > > > If you're maintaining oxygen at 98% even under exertion and have > PF > > then I will deed the Pacific Ocean over to you, including Hawaii. > I > > don't mean to be funny, but thats just totally inconsistent. With > > your PFT's your oxygen saturation has to be slipping some. Please > > check because oxygen isn't just important for shortness of breath. > It > > protects your organs. If they are pushing for VATS, i just have to > > believe you need or are close to needing oxygen at least for > > exertion. What did your oxygen levels drop to at night? They did > > drop. Everyone's do, even perfectly healthy. You make a dangerous > > statement " I'm assuming that both my PC and the Pulmonologist do > not > > feel the need for it. " It's your life and you are your medical > > manager. Maybe I'm wrong completely but its a simple way to find > out > > and I can't imagine with your PFT's that your oxygen doesn't at > least > > drop to the low 90's on exertion and if it goes below 90 that > means > > you need oxygen. After all, what do you think gave you the > symptoms > > to start with? Your oxygen dropping. > > > > Now your percentages on your PFT's make sense. Don't have any idea > > why but normal for Asians is lower than Caucasians. Height makes > more > > sense to me. > > > > Now.....I understand not telling the kids until you know for sure. > > But, ultimately, honesty with everyone in your life will provide > you > > such relief and they need it too. Its a long battle and if you > can't > > communicate in every way, Sharing with your wife was the most > > important thing you could have done and while draining will be > > freeing to both of you. > > > > As to what you might or might do different after VATS. With UIP > you > > might choose not to do Imuran and Prednisone and you might choose > to > > do them with all others. Or you might do them regardless or not do > > them regardless.. ..those are choices you'll make. > > > > Also, it can effect your choices of clinical trials and it can > effect > > your life planning. > > > > One other thing. Take care of all legal matters early and even > before > > VATS, such as Medical Power of Attorney, Directives, Anything > dealing > > with death or with incapacitation. Why? Then death is taken care > of. > > All you have to ever deal with after is life. Making the most of > > every remaining moment whether 1 year of 50. These are things you > > should have already done anyway. > > > > As to determining PF without biopsy. You can determine PF in > general. > > However, the accuracy of which kind is only about 60%. Early its > > less, later its greater. The accuracy with VATS is around 97%. > Insist > > the biopsies are read by more than one radiologist too. Mine were > > also sent to Mayo Clinic. > > > > VATS may technically and as far as potential death be the simplest > > thing he does. But to you its invasive and can have complications > and > > is likely to leave you with some residual pain. Its invasive to > have > > three pieces of your lung taken. So while I'd do it again, don't > > underestimate it, but don't overestimate it either. > > > > As to Imuran and Prednisone without VATS. Yes, one can just assume > PF > > and do that. But understand Prednisone isn't a mild drug. And, > having > > a VATS while you're strong instead of later is better. Plus you'll > > need it if you consider a biopsy. Now, if you're going to have a > VATS > > you would not do Prednisone before as it weakens your immune > system. > > > > Well, I'm so glad you came here. I know its overwhelming, but > you're > > doing an excellent job of learning and listening. We try to be > > completely honest and don't mince words. Always feel free to ask > or > > say anything. We're sorry you have to be here but welcome you to > our > > Air Family. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 But, i didn't offer it to you....lol So he still has a chance to collect > > > > > > > > A couple of things.... > > > > > > > > If you're maintaining oxygen at 98% even under exertion and > have > > > PF > > > > then I will deed the Pacific Ocean over to you, including > Hawaii. > > > I > > > > don't mean to be funny, but thats just totally inconsistent. > With > > > > your PFT's your oxygen saturation has to be slipping some. > Please > > > > check because oxygen isn't just important for shortness of > > breath. > > > It > > > > protects your organs. If they are pushing for VATS, i just > have > > to > > > > believe you need or are close to needing oxygen at least for > > > > exertion. What did your oxygen levels drop to at night? They > did > > > > drop. Everyone's do, even perfectly healthy. You make a > dangerous > > > > statement " I'm assuming that both my PC and the Pulmonologist > do > > > not > > > > feel the need for it. " It's your life and you are your medical > > > > manager. Maybe I'm wrong completely but its a simple way to > find > > > out > > > > and I can't imagine with your PFT's that your oxygen doesn't > at > > > least > > > > drop to the low 90's on exertion and if it goes below 90 that > > > means > > > > you need oxygen. After all, what do you think gave you the > > > symptoms > > > > to start with? Your oxygen dropping. > > > > > > > > Now your percentages on your PFT's make sense. Don't have any > > idea > > > > why but normal for Asians is lower than Caucasians. Height > makes > > > more > > > > sense to me. > > > > > > > > Now.....I understand not telling the kids until you know for > > sure. > > > > But, ultimately, honesty with everyone in your life will > provide > > > you > > > > such relief and they need it too. Its a long battle and if you > > > can't > > > > communicate in every way, Sharing with your wife was the most > > > > important thing you could have done and while draining will be > > > > freeing to both of you. > > > > > > > > As to what you might or might do different after VATS. With > UIP > > > you > > > > might choose not to do Imuran and Prednisone and you might > choose > > > to > > > > do them with all others. Or you might do them regardless or > not > > do > > > > them regardless....those are choices you'll make. > > > > > > > > Also, it can effect your choices of clinical trials and it can > > > effect > > > > your life planning. > > > > > > > > One other thing. Take care of all legal matters early and even > > > before > > > > VATS, such as Medical Power of Attorney, Directives, Anything > > > dealing > > > > with death or with incapacitation. Why? Then death is taken > care > > > of. > > > > All you have to ever deal with after is life. Making the most > of > > > > every remaining moment whether 1 year of 50. These are things > you > > > > should have already done anyway. > > > > > > > > As to determining PF without biopsy. You can determine PF in > > > general. > > > > However, the accuracy of which kind is only about 60%. Early > its > > > > less, later its greater. The accuracy with VATS is around 97%. > > > Insist > > > > the biopsies are read by more than one radiologist too. Mine > were > > > > also sent to Mayo Clinic. > > > > > > > > VATS may technically and as far as potential death be the > > simplest > > > > thing he does. But to you its invasive and can have > complications > > > and > > > > is likely to leave you with some residual pain. Its invasive > to > > > have > > > > three pieces of your lung taken. So while I'd do it again, > don't > > > > underestimate it, but don't overestimate it either. > > > > > > > > As to Imuran and Prednisone without VATS. Yes, one can just > > assume > > > PF > > > > and do that. But understand Prednisone isn't a mild drug. And, > > > having > > > > a VATS while you're strong instead of later is better. Plus > > you'll > > > > need it if you consider a biopsy. Now, if you're going to have > a > > > VATS > > > > you would not do Prednisone before as it weakens your immune > > > system. > > > > > > > > Well, I'm so glad you came here. I know its overwhelming, but > > > you're > > > > doing an excellent job of learning and listening. We try to be > > > > completely honest and don't mince words. Always feel free to > ask > > > or > > > > say anything. We're sorry you have to be here but welcome you > to > > > our > > > > Air Family. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Thats why on VATS i always just try to point out the things I would consider..... Same for prednisone. Same for Transplant. So many difficult choices. Why didn't we get a disease with a simple guide book. > > > > > > A couple of things.... > > > > > > If you're maintaining oxygen at 98% even under exertion and have > > PF > > > then I will deed the Pacific Ocean over to you, including > Hawaii. > > I > > > don't mean to be funny, but thats just totally inconsistent. > With > > > your PFT's your oxygen saturation has to be slipping some. > Please > > > check because oxygen isn't just important for shortness of > breath. > > It > > > protects your organs. If they are pushing for VATS, i just have > to > > > believe you need or are close to needing oxygen at least for > > > exertion. What did your oxygen levels drop to at night? They did > > > drop. Everyone's do, even perfectly healthy. You make a > dangerous > > > statement " I'm assuming that both my PC and the Pulmonologist do > > not > > > feel the need for it. " It's your life and you are your medical > > > manager. Maybe I'm wrong completely but its a simple way to find > > out > > > and I can't imagine with your PFT's that your oxygen doesn't at > > least > > > drop to the low 90's on exertion and if it goes below 90 that > > means > > > you need oxygen. After all, what do you think gave you the > > symptoms > > > to start with? Your oxygen dropping. > > > > > > Now your percentages on your PFT's make sense. Don't have any > idea > > > why but normal for Asians is lower than Caucasians. Height makes > > more > > > sense to me. > > > > > > Now.....I understand not telling the kids until you know for > sure. > > > But, ultimately, honesty with everyone in your life will provide > > you > > > such relief and they need it too. Its a long battle and if you > > can't > > > communicate in every way, Sharing with your wife was the most > > > important thing you could have done and while draining will be > > > freeing to both of you. > > > > > > As to what you might or might do different after VATS. With UIP > > you > > > might choose not to do Imuran and Prednisone and you might > choose > > to > > > do them with all others. Or you might do them regardless or not > do > > > them regardless.. ..those are choices you'll make. > > > > > > Also, it can effect your choices of clinical trials and it can > > effect > > > your life planning. > > > > > > One other thing. Take care of all legal matters early and even > > before > > > VATS, such as Medical Power of Attorney, Directives, Anything > > dealing > > > with death or with incapacitation. Why? Then death is taken care > > of. > > > All you have to ever deal with after is life. Making the most of > > > every remaining moment whether 1 year of 50. These are things > you > > > should have already done anyway. > > > > > > As to determining PF without biopsy. You can determine PF in > > general. > > > However, the accuracy of which kind is only about 60%. Early its > > > less, later its greater. The accuracy with VATS is around 97%. > > Insist > > > the biopsies are read by more than one radiologist too. Mine > were > > > also sent to Mayo Clinic. > > > > > > VATS may technically and as far as potential death be the > simplest > > > thing he does. But to you its invasive and can have > complications > > and > > > is likely to leave you with some residual pain. Its invasive to > > have > > > three pieces of your lung taken. So while I'd do it again, don't > > > underestimate it, but don't overestimate it either. > > > > > > As to Imuran and Prednisone without VATS. Yes, one can just > assume > > PF > > > and do that. But understand Prednisone isn't a mild drug. And, > > having > > > a VATS while you're strong instead of later is better. Plus > you'll > > > need it if you consider a biopsy. Now, if you're going to have a > > VATS > > > you would not do Prednisone before as it weakens your immune > > system. > > > > > > Well, I'm so glad you came here. I know its overwhelming, but > > you're > > > doing an excellent job of learning and listening. We try to be > > > completely honest and don't mince words. Always feel free to ask > > or > > > say anything. We're sorry you have to be here but welcome you to > > our > > > Air Family. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Bruce, I actually had my VATS without ever having my sats under exertion tested and my most recent diagnosing is NSIP but my CT notes " honeycombing " . This is why I hate to hear " absolutes " about proposed treatments. It is just like finding one cure for cancer. There are many different types of cancer and different treatment options. Same with PF, we are all different. We all need to learn as much as we can and then we can decide what treatment(s)or testing we are willing to undergo. Kathie WA NSIP '96--- In Breathe-Support , " Bruce Moreland " wrote: > > Kerry > > I didn't mean to imply any absolutes about how the disease behaves > except surprise that one would get to the point of VATS and have > never been tested for their oxygen saturation under exertion. I'm not > saying it necessarily drops to the point of needing oxygen, but he > does report some extreme sob under certain conditions so I would just > think a simple non-invasive check of his sats under exertion would be > appropriate. If you had PF and 98% saturation under exertion then it > does surprise me, but at least your saturation was checked. And his > symptom isn't just a cough, it is extreme sob under certain > conditions. > > We all do need reminders of no absolutes and I think most of all the > pulmonologists do as they often present it one way with no choices to > be made. > > So, no absolute on how it behaves. But, I will stick with the opinion > a check of sats under exertion is appropriate. > > > > > > > > > A couple of things.... > > > > > > If you're maintaining oxygen at 98% even under exertion and have > > PF > > > then I will deed the Pacific Ocean over to you, including Hawaii. > > I > > > don't mean to be funny, but thats just totally inconsistent. With > > > your PFT's your oxygen saturation has to be slipping some. Please > > > check because oxygen isn't just important for shortness of > breath. > > It > > > protects your organs. If they are pushing for VATS, i just have > to > > > believe you need or are close to needing oxygen at least for > > > exertion. What did your oxygen levels drop to at night? They did > > > drop. Everyone's do, even perfectly healthy. You make a dangerous > > > statement " I'm assuming that both my PC and the Pulmonologist do > > not > > > feel the need for it. " It's your life and you are your medical > > > manager. Maybe I'm wrong completely but its a simple way to find > > out > > > and I can't imagine with your PFT's that your oxygen doesn't at > > least > > > drop to the low 90's on exertion and if it goes below 90 that > > means > > > you need oxygen. After all, what do you think gave you the > > symptoms > > > to start with? Your oxygen dropping. > > > > > > Now your percentages on your PFT's make sense. Don't have any > idea > > > why but normal for Asians is lower than Caucasians. Height makes > > more > > > sense to me. > > > > > > Now.....I understand not telling the kids until you know for > sure. > > > But, ultimately, honesty with everyone in your life will provide > > you > > > such relief and they need it too. Its a long battle and if you > > can't > > > communicate in every way, Sharing with your wife was the most > > > important thing you could have done and while draining will be > > > freeing to both of you. > > > > > > As to what you might or might do different after VATS. With UIP > > you > > > might choose not to do Imuran and Prednisone and you might choose > > to > > > do them with all others. Or you might do them regardless or not > do > > > them regardless....those are choices you'll make. > > > > > > Also, it can effect your choices of clinical trials and it can > > effect > > > your life planning. > > > > > > One other thing. Take care of all legal matters early and even > > before > > > VATS, such as Medical Power of Attorney, Directives, Anything > > dealing > > > with death or with incapacitation. Why? Then death is taken care > > of. > > > All you have to ever deal with after is life. Making the most of > > > every remaining moment whether 1 year of 50. These are things you > > > should have already done anyway. > > > > > > As to determining PF without biopsy. You can determine PF in > > general. > > > However, the accuracy of which kind is only about 60%. Early its > > > less, later its greater. The accuracy with VATS is around 97%. > > Insist > > > the biopsies are read by more than one radiologist too. Mine were > > > also sent to Mayo Clinic. > > > > > > VATS may technically and as far as potential death be the > simplest > > > thing he does. But to you its invasive and can have complications > > and > > > is likely to leave you with some residual pain. Its invasive to > > have > > > three pieces of your lung taken. So while I'd do it again, don't > > > underestimate it, but don't overestimate it either. > > > > > > As to Imuran and Prednisone without VATS. Yes, one can just > assume > > PF > > > and do that. But understand Prednisone isn't a mild drug. And, > > having > > > a VATS while you're strong instead of later is better. Plus > you'll > > > need it if you consider a biopsy. Now, if you're going to have a > > VATS > > > you would not do Prednisone before as it weakens your immune > > system. > > > > > > Well, I'm so glad you came here. I know its overwhelming, but > > you're > > > doing an excellent job of learning and listening. We try to be > > > completely honest and don't mince words. Always feel free to ask > > or > > > say anything. We're sorry you have to be here but welcome you to > > our > > > Air Family. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Really must be frustrating not to even be able to get a clear diagnosis. By the recent survey here I saw about half of those responding not sure as to what form of PF they have. I don't know how I would deal with that. Of course, down the road they may change their mind on me, but they do seem unanimous and with no questions at this point. My neurologist refuses to just go with any CT reading by a radiologist. He puts them up and reads them in detail while you are there. He doesn't like the computer versions only either. They hate how much expensive printing he requires. But he wants to make sure he sees the same as the radiologist. Should CT's be read by more than one radiologist, especially when dealing with such serious diseases? Now, my problem has been radiologists identifying and doctors not even noticing. I had two CT's indicating Interstitial Lung Disease and doctors never said a word. Four of my doctors had access to those. It was two months later when I complained and got a six minute walk before anything happened. What was your NSIP diagnosis based on? Did anyone ever offer you an explanation for the NSIP versus the honeycombing? That does remind that the prevailing percentages based on VATS and other means is that the typical diagnosis based on CT's is only 60% accurate as to which form of ILD. So, while the CT is very good at identifying an ILD, to make too many treatment choices and decisions based on the particular form, especially in early stages, may not be wise. > > > > > > > > A couple of things.... > > > > > > > > If you're maintaining oxygen at 98% even under exertion and > have > > > PF > > > > then I will deed the Pacific Ocean over to you, including > Hawaii. > > > I > > > > don't mean to be funny, but thats just totally inconsistent. > With > > > > your PFT's your oxygen saturation has to be slipping some. > Please > > > > check because oxygen isn't just important for shortness of > > breath. > > > It > > > > protects your organs. If they are pushing for VATS, i just have > > to > > > > believe you need or are close to needing oxygen at least for > > > > exertion. What did your oxygen levels drop to at night? They > did > > > > drop. Everyone's do, even perfectly healthy. You make a > dangerous > > > > statement " I'm assuming that both my PC and the Pulmonologist > do > > > not > > > > feel the need for it. " It's your life and you are your medical > > > > manager. Maybe I'm wrong completely but its a simple way to > find > > > out > > > > and I can't imagine with your PFT's that your oxygen doesn't at > > > least > > > > drop to the low 90's on exertion and if it goes below 90 that > > > means > > > > you need oxygen. After all, what do you think gave you the > > > symptoms > > > > to start with? Your oxygen dropping. > > > > > > > > Now your percentages on your PFT's make sense. Don't have any > > idea > > > > why but normal for Asians is lower than Caucasians. Height > makes > > > more > > > > sense to me. > > > > > > > > Now.....I understand not telling the kids until you know for > > sure. > > > > But, ultimately, honesty with everyone in your life will > provide > > > you > > > > such relief and they need it too. Its a long battle and if you > > > can't > > > > communicate in every way, Sharing with your wife was the most > > > > important thing you could have done and while draining will be > > > > freeing to both of you. > > > > > > > > As to what you might or might do different after VATS. With UIP > > > you > > > > might choose not to do Imuran and Prednisone and you might > choose > > > to > > > > do them with all others. Or you might do them regardless or not > > do > > > > them regardless....those are choices you'll make. > > > > > > > > Also, it can effect your choices of clinical trials and it can > > > effect > > > > your life planning. > > > > > > > > One other thing. Take care of all legal matters early and even > > > before > > > > VATS, such as Medical Power of Attorney, Directives, Anything > > > dealing > > > > with death or with incapacitation. Why? Then death is taken > care > > > of. > > > > All you have to ever deal with after is life. Making the most > of > > > > every remaining moment whether 1 year of 50. These are things > you > > > > should have already done anyway. > > > > > > > > As to determining PF without biopsy. You can determine PF in > > > general. > > > > However, the accuracy of which kind is only about 60%. Early > its > > > > less, later its greater. The accuracy with VATS is around 97%. > > > Insist > > > > the biopsies are read by more than one radiologist too. Mine > were > > > > also sent to Mayo Clinic. > > > > > > > > VATS may technically and as far as potential death be the > > simplest > > > > thing he does. But to you its invasive and can have > complications > > > and > > > > is likely to leave you with some residual pain. Its invasive to > > > have > > > > three pieces of your lung taken. So while I'd do it again, > don't > > > > underestimate it, but don't overestimate it either. > > > > > > > > As to Imuran and Prednisone without VATS. Yes, one can just > > assume > > > PF > > > > and do that. But understand Prednisone isn't a mild drug. And, > > > having > > > > a VATS while you're strong instead of later is better. Plus > > you'll > > > > need it if you consider a biopsy. Now, if you're going to have > a > > > VATS > > > > you would not do Prednisone before as it weakens your immune > > > system. > > > > > > > > Well, I'm so glad you came here. I know its overwhelming, but > > > you're > > > > doing an excellent job of learning and listening. We try to be > > > > completely honest and don't mince words. Always feel free to > ask > > > or > > > > say anything. We're sorry you have to be here but welcome you > to > > > our > > > > Air Family. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Kerry, You don't need to eavesdrop just close your eyes and open your heart and there they are..Always. I can't tell you how I am praying and hoping with all my heart that you have peace and guidance for all the things to come. Love and Prayers, Peggyipf 6/04Worry looks around.Sorry looks back,Faith looks up. Well said 'cause I used your saying! We were a good tag team w/ Joyce. I tried to check on her in between you and Leanne (checking posts in between so we didn't make her talk too much). I won't be able to check on Joyce this week because I'll be busy getting checked myself. This week is my eval. in Indy. I'll be eavesdropping for the prayers from Florida.Love you too!Kerry> Kerry, well said. I am so glad you are here. I just love you. If you > are up to it check on the Queen for us from time to time.> Thanks.> > Love and Prayers, Peggy> ipf 6/04> > Worry looks around.> Sorry looks back,> Faith looks up.> > > > > > > Kerry,> Thanks so much for that eloquently worded reminder of how differently > this disease works on each person. Dilwala's post actually reminded > me of you and I was hoping you'd add your 2 cents as you seem to be > the person here with the most in common with him.> > I so admire your strength and courage!!> > Love,> > Beth in NC age 48 Fibrotic NSIP 06/06> > "For as long as I shall live, I will testify to Love."> > > > > I'll take that deed> > Gotta reply here. Public service reminder that there is no absolute> in IPF. About the only thing I'm sure of is there's nothing> absolute about it. Most doctors and researchers don't agree. Those> posting have many things in common, but no 2 have exactly the same> path, symptoms, treatments or future.> > When I first joined this site I spent ages going thru old posts so I> could see the discussions of topics that applied to me so I could> research what had been said from everyone. I wanted to find the> person that most matched my symptoms, my situation, not just what> the latest person, the most dominate voice, the newest research. I> wanted to see what held up over time, what people came back around> to again and again. What they said when they were at their weakest> and strongest. You'll see w/ each new wave of folks comes the> discussions of VATS, OLB, Prednisone, immunosuppressants, NAC,> exercise, cough, SOB, PFTs, rehab, doctors, CT's, causes, cures,> treatments, loss, hope, depression, prayer, ILD, IPF, PF, NSIP,> COPD, smoking, death, age, etc. Please for anyone new to this site> one of the best things to do is click on messages and then type in> about any word to search on.> > So, now I'll take that deed to the Pacific and Hawaii. You> absolutely can have PF and have 98% saturation w/ exertion. Call> me "TOTALLY INCONSISTENT" !!! Really, I had hoped to always be a> medical phenomenon and was happy w/ that. For many, many years I> only had an annoying cough. You could say I'm not a text book case,> but that's the thing there is no textbook w/ IPF. If you are fit> and active that can majorly affect how it presents. Also the human> body has an amazing ability to compensate for many, many things. My> doctor was always amazed at the level I functioned and that it just> didn't affect my life and lifestyle as greatly as it "should" have.> There just is no absolute. Everyone is different. I hope that> everyone is happy w/ their path, but it is just that their path. If> I had become ill as suddenly as others on this board I would have> gotten that biopsy and/or done Prednisone, but that just wasn't my> case. It took 6 to 10 years to get where anything, but extreme> exertion caused my saturation to drop and so I'm very happy that I> opted to track my disease w/ PFT's and CT's rather than opening> myself up to lung collapse, more scarring and countless other> complications that could have made my disease worse sooner rather> than later. I could have immediately started on Prednisone and then> we would have attributed my "stability" to that instead of me just> actually being stable on my own. Then of course I could have worse> health because of the Pred or immunos. Just saying that you can't> say that VATS or the medications are always the right thing for> everyone. I'm just trying to remind folks there are different> opinions on this one along w/ everything in this crazy world of> IPF.> > Lastly, to Dilwala VATS or no VATS... the biggest reminder here is> there is no doctor that can tell you you've got 6 1/2 months to 2> years. They've told so many on this board that... Check out some> of the signoffs for how long people have been diagnosed. 1 year, 5> years, 10 years, 18 years and many of us have had it long before> that date. Peggy says it best... there's no expiration date stamped> anywhere on me!> > Kerry> IPF '01> S. IN> > > >> > A couple of things....> >> > If you're maintaining oxygen at 98% even under exertion and have> PF> > then I will deed the Pacific Ocean over to you, including Hawaii.> I> > don't mean to be funny, but thats just totally inconsistent. With> > your PFT's your oxygen saturation has to be slipping some. Please> > check because oxygen isn't just important for shortness of breath.> It> > protects your organs. If they are pushing for VATS, i just have to> > believe you need or are close to needing oxygen at least for> > exertion. What did your oxygen levels drop to at night? They did> > drop. Everyone's do, even perfectly healthy. You make a dangerous> > statement "I'm assuming that both my PC and the Pulmonologist do> not> > feel the need for it." It's your life and you are your medical> > manager. Maybe I'm wrong completely but its a simple way to find> out> > and I can't imagine with your PFT's that your oxygen doesn't at> least> > drop to the low 90's on exertion and if it goes below 90 that> means> > you need oxygen. After all, what do you think gave you the> symptoms> > to start with? Your oxygen dropping.> >> > Now your percentages on your PFT's make sense. Don't have any idea> > why but normal for Asians is lower than Caucasians. Height makes> more> > sense to me.> >> > Now.....I understand not telling the kids until you know for sure.> > But, ultimately, honesty with everyone in your life will provide> you> > such relief and they need it too. Its a long battle and if you> can't> > communicate in every way, Sharing with your wife was the most> > important thing you could have done and while draining will be> > freeing to both of you.> >> > As to what you might or might do different after VATS. With UIP> you> > might choose not to do Imuran and Prednisone and you might choose> to> > do them with all others. Or you might do them regardless or not do> > them regardless.. ..those are choices you'll make.> >> > Also, it can effect your choices of clinical trials and it can> effect> > your life planning.> >> > One other thing. Take care of all legal matters early and even> before> > VATS, such as Medical Power of Attorney, Directives, Anything> dealing> > with death or with incapacitation. Why? Then death is taken care> of.> > All you have to ever deal with after is life. Making the most of> > every remaining moment whether 1 year of 50. These are things you> > should have already done anyway.> >> > As to determining PF without biopsy. You can determine PF in> general.> > However, the accuracy of which kind is only about 60%. Early its> > less, later its greater. The accuracy with VATS is around 97%.> Insist> > the biopsies are read by more than one radiologist too. Mine were> > also sent to Mayo Clinic.> >> > VATS may technically and as far as potential death be the simplest> > thing he does. But to you its invasive and can have complications> and> > is likely to leave you with some residual pain. Its invasive to> have> > three pieces of your lung taken. So while I'd do it again, don't> > underestimate it, but don't overestimate it either.> >> > As to Imuran and Prednisone without VATS. Yes, one can just assume> PF> > and do that. But understand Prednisone isn't a mild drug. And,> having> > a VATS while you're strong instead of later is better. Plus you'll> > need it if you consider a biopsy. Now, if you're going to have a> VATS> > you would not do Prednisone before as it weakens your immune> system.> >> > Well, I'm so glad you came here. I know its overwhelming, but> you're> > doing an excellent job of learning and listening. We try to be> > completely honest and don't mince words. Always feel free to ask> or> > say anything. We're sorry you have to be here but welcome you to> our> > Air Family.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 My NSIP diagnosis was made following a biopsy - I have no idea if it was a VATS or not. They put me to sleep, made incisions in the right lung and also stuck in a chest tube. They sent the specimens off to Mayo Clinic. Mayo said it was NSIP but offered no explanation. That was followed by 3 days in surgical ICU and a raging morphine psychosis with a nutzoid nurse who, by the way, passed out during that night and was sent home. That was the day they pulled the tube out, my lung collapsed and the tube had to be reinserted. Never let a doctor tell you it is better because they stick it back in the same hole. We have spent some time working with my environmentals - ripped the carpet out of my bedroom, bought a really nice room HEPA air purifier, cleaned the air condititioning ducts and air returns. We even shaved our Sheltie, much to her consternation and embarrassment. I don't know that it really helped much since I still can't get under 20 mg of Prednisone without getting sick. But the house smells better. I will always blame my thyroid cancer & 3 tx of radioactive I-131 and my Hashimoto's - the first of my autoimmune diseases. That's the thing with thyroid cancer. That isn't usually the one that get you, it is the next one. They also did several CT scans as well but they weren't particularly helpful. But I agree with whomever it was that I saw earlier that said she didn't have an expiration date stamped on her! S, Lubbock, TX NSIP w/PF, Celiac, Type II diab > > > > > > > > > > A couple of things.... > > > > > > > > > > If you're maintaining oxygen at 98% even under exertion and > > have > > > > PF > > > > > then I will deed the Pacific Ocean over to you, including > > Hawaii. > > > > I > > > > > don't mean to be funny, but thats just totally inconsistent. > > With > > > > > your PFT's your oxygen saturation has to be slipping some. > > Please > > > > > check because oxygen isn't just important for shortness of > > > breath. > > > > It > > > > > protects your organs. If they are pushing for VATS, i just > have > > > to > > > > > believe you need or are close to needing oxygen at least for > > > > > exertion. What did your oxygen levels drop to at night? They > > did > > > > > drop. Everyone's do, even perfectly healthy. You make a > > dangerous > > > > > statement " I'm assuming that both my PC and the Pulmonologist > > do > > > > not > > > > > feel the need for it. " It's your life and you are your > medical > > > > > manager. Maybe I'm wrong completely but its a simple way to > > find > > > > out > > > > > and I can't imagine with your PFT's that your oxygen doesn't > at > > > > least > > > > > drop to the low 90's on exertion and if it goes below 90 that > > > > means > > > > > you need oxygen. After all, what do you think gave you the > > > > symptoms > > > > > to start with? Your oxygen dropping. > > > > > > > > > > Now your percentages on your PFT's make sense. Don't have any > > > idea > > > > > why but normal for Asians is lower than Caucasians. Height > > makes > > > > more > > > > > sense to me. > > > > > > > > > > Now.....I understand not telling the kids until you know for > > > sure. > > > > > But, ultimately, honesty with everyone in your life will > > provide > > > > you > > > > > such relief and they need it too. Its a long battle and if > you > > > > can't > > > > > communicate in every way, Sharing with your wife was the most > > > > > important thing you could have done and while draining will > be > > > > > freeing to both of you. > > > > > > > > > > As to what you might or might do different after VATS. With > UIP > > > > you > > > > > might choose not to do Imuran and Prednisone and you might > > choose > > > > to > > > > > do them with all others. Or you might do them regardless or > not > > > do > > > > > them regardless....those are choices you'll make. > > > > > > > > > > Also, it can effect your choices of clinical trials and it > can > > > > effect > > > > > your life planning. > > > > > > > > > > One other thing. Take care of all legal matters early and > even > > > > before > > > > > VATS, such as Medical Power of Attorney, Directives, Anything > > > > dealing > > > > > with death or with incapacitation. Why? Then death is taken > > care > > > > of. > > > > > All you have to ever deal with after is life. Making the most > > of > > > > > every remaining moment whether 1 year of 50. These are things > > you > > > > > should have already done anyway. > > > > > > > > > > As to determining PF without biopsy. You can determine PF in > > > > general. > > > > > However, the accuracy of which kind is only about 60%. Early > > its > > > > > less, later its greater. The accuracy with VATS is around > 97%. > > > > Insist > > > > > the biopsies are read by more than one radiologist too. Mine > > were > > > > > also sent to Mayo Clinic. > > > > > > > > > > VATS may technically and as far as potential death be the > > > simplest > > > > > thing he does. But to you its invasive and can have > > complications > > > > and > > > > > is likely to leave you with some residual pain. Its invasive > to > > > > have > > > > > three pieces of your lung taken. So while I'd do it again, > > don't > > > > > underestimate it, but don't overestimate it either. > > > > > > > > > > As to Imuran and Prednisone without VATS. Yes, one can just > > > assume > > > > PF > > > > > and do that. But understand Prednisone isn't a mild drug. > And, > > > > having > > > > > a VATS while you're strong instead of later is better. Plus > > > you'll > > > > > need it if you consider a biopsy. Now, if you're going to > have > > a > > > > VATS > > > > > you would not do Prednisone before as it weakens your immune > > > > system. > > > > > > > > > > Well, I'm so glad you came here. I know its overwhelming, but > > > > you're > > > > > doing an excellent job of learning and listening. We try to > be > > > > > completely honest and don't mince words. Always feel free to > > ask > > > > or > > > > > say anything. We're sorry you have to be here but welcome you > > to > > > > our > > > > > Air Family. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Bruce, When I first became ill I don't think they were using as many categories under the ILD/PF umbrella. I never saw the NSIP dx until a few, maybe 5 years ago. I believe my lung doc changed it because of my longevity. I say this because there were no new findings at the time. The results from the biopsy were inconclusive, that was done 12 years ago this April. I have been evaluated for a transplant and my case was presented to the " committee " in '03 I think. It was just before the UNOS regulations regarding lung tx changed (maybe before '03??). I remember hearing that Dr. Raghu had to spend some time convincing them that even though he didn't know the cause of my PF he didn't think it would come back. The committee did approve but I needed to lose some weight 20 lbs, I think and even though I lost it and gained it and lost it, I never wanted a transplant so wasn't listed. I got tired of Dr. R bringing the tx up every 3 months so I asked him not to and he tries not to but it did come up again in December due to my " deteriorating " his words. In 2005 I under went testing for mctd, ended with a visit to the neurologist and a positive test result for myostitis. The neurologist said there was other testing that could be done but even if confirmed there wasn't any treatment available to me with the advanced lung disease. In the beginning (and in the middle) I searched and pushed and I as I have said before I tried everything I was offered, Pred, Imuran, Cytoxan, interferon gamma 1b, Tracleer. I still take prednisone and Tracleer. As to be expected I have moderate PH and bronchiectasis. Dr. R. says something must have worked to have progressed so slowly, he just doesn't know what. Thanks for asking, Bruce. Kathie > > > > > > > > > > A couple of things.... > > > > > > > > > > If you're maintaining oxygen at 98% even under exertion and > > have > > > > PF > > > > > then I will deed the Pacific Ocean over to you, including > > Hawaii. > > > > I > > > > > don't mean to be funny, but thats just totally inconsistent. > > With > > > > > your PFT's your oxygen saturation has to be slipping some. > > Please > > > > > check because oxygen isn't just important for shortness of > > > breath. > > > > It > > > > > protects your organs. If they are pushing for VATS, i just > have > > > to > > > > > believe you need or are close to needing oxygen at least for > > > > > exertion. What did your oxygen levels drop to at night? They > > did > > > > > drop. Everyone's do, even perfectly healthy. You make a > > dangerous > > > > > statement " I'm assuming that both my PC and the Pulmonologist > > do > > > > not > > > > > feel the need for it. " It's your life and you are your > medical > > > > > manager. Maybe I'm wrong completely but its a simple way to > > find > > > > out > > > > > and I can't imagine with your PFT's that your oxygen doesn't > at > > > > least > > > > > drop to the low 90's on exertion and if it goes below 90 that > > > > means > > > > > you need oxygen. After all, what do you think gave you the > > > > symptoms > > > > > to start with? Your oxygen dropping. > > > > > > > > > > Now your percentages on your PFT's make sense. Don't have any > > > idea > > > > > why but normal for Asians is lower than Caucasians. Height > > makes > > > > more > > > > > sense to me. > > > > > > > > > > Now.....I understand not telling the kids until you know for > > > sure. > > > > > But, ultimately, honesty with everyone in your life will > > provide > > > > you > > > > > such relief and they need it too. Its a long battle and if > you > > > > can't > > > > > communicate in every way, Sharing with your wife was the most > > > > > important thing you could have done and while draining will > be > > > > > freeing to both of you. > > > > > > > > > > As to what you might or might do different after VATS. With > UIP > > > > you > > > > > might choose not to do Imuran and Prednisone and you might > > choose > > > > to > > > > > do them with all others. Or you might do them regardless or > not > > > do > > > > > them regardless....those are choices you'll make. > > > > > > > > > > Also, it can effect your choices of clinical trials and it > can > > > > effect > > > > > your life planning. > > > > > > > > > > One other thing. Take care of all legal matters early and > even > > > > before > > > > > VATS, such as Medical Power of Attorney, Directives, Anything > > > > dealing > > > > > with death or with incapacitation. Why? Then death is taken > > care > > > > of. > > > > > All you have to ever deal with after is life. Making the most > > of > > > > > every remaining moment whether 1 year of 50. These are things > > you > > > > > should have already done anyway. > > > > > > > > > > As to determining PF without biopsy. You can determine PF in > > > > general. > > > > > However, the accuracy of which kind is only about 60%. Early > > its > > > > > less, later its greater. The accuracy with VATS is around > 97%. > > > > Insist > > > > > the biopsies are read by more than one radiologist too. Mine > > were > > > > > also sent to Mayo Clinic. > > > > > > > > > > VATS may technically and as far as potential death be the > > > simplest > > > > > thing he does. But to you its invasive and can have > > complications > > > > and > > > > > is likely to leave you with some residual pain. Its invasive > to > > > > have > > > > > three pieces of your lung taken. So while I'd do it again, > > don't > > > > > underestimate it, but don't overestimate it either. > > > > > > > > > > As to Imuran and Prednisone without VATS. Yes, one can just > > > assume > > > > PF > > > > > and do that. But understand Prednisone isn't a mild drug. > And, > > > > having > > > > > a VATS while you're strong instead of later is better. Plus > > > you'll > > > > > need it if you consider a biopsy. Now, if you're going to > have > > a > > > > VATS > > > > > you would not do Prednisone before as it weakens your immune > > > > system. > > > > > > > > > > Well, I'm so glad you came here. I know its overwhelming, but > > > > you're > > > > > doing an excellent job of learning and listening. We try to > be > > > > > completely honest and don't mince words. Always feel free to > > ask > > > > or > > > > > say anything. We're sorry you have to be here but welcome you > > to > > > > our > > > > > Air Family. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Bruce, when can we meet to make the deed official? I would like Kerry and Beth as my witnesses. Air Family members, when Bruce comes through with this deed, you are all invited to an all expensed paid gala in Hawaii. Again, thank you all for responding. I will respond individually as soon as I can. I also have a feeling that I will stop `thanking' soon. Helping out and being there for each other appears to be a norm with the Air Family. How often can a CT scan be `safely' repeated? I have a cd that shows scattered white spots on both lungs. I did ask my Pulmonologist " can we repeat the CT scan in six months or so to see if there is increase in the white spots " ? I don't recall his answer verbatim, but it was NOT an option. My current thoughts are that, if a CT scan can be repeated at its safest and earliest frequency (one-to-six months), and if there is less than five percent chance of this thing spreading quickly (before the next CT scan), then I would rather wait on the VATS. I realize it was I who started to seek out " what's going on with me " . Clearly, it was the 2nd lung test reading of 35% at the health fair at my work in June 2007. It was a drop from 57% in 2005. This took me to the Pulmonologist. My first visit with him lasted for ~20 minutes. A CT scan and PFT were ordered. My second visit with him was also around 20 minutes. A biopsy was recommended. Yes, I asked a lot of questions. Biopsy seemed to be the only alternative. The initial consultation with the surgeon was on 12/03/07. It was also less then 30 minutes long. He was rather blunt with me when I started to ask questions (too many I guess); " Look I am not the Pulmonologist; I will only do the surgery " . His words verbatim were " the only intelligent choice was to have the biopsy " . He recommended that it be performed before X-Mas holidays. I opted to schedule the VATS as it appeared to be the only option that `may' extend my life beyond 6 months to six years. I called his office on Feb 1st to schedule the VATS. When I saw him (with my wife) for the 2nd time on Feb 5th he informed us that he would not be able to spend too much time with us. He was headed out the door to attend an emergency. He spent less than five minutes with us. Physically/Psychologically, if my condition remains as is, I would not miss much in life. Ok, I understand that it will not remain `as is' or no one can correctly predict how long it will remain as is. While Kerry has depicted otherwise, most of you are of the opinion that if biopsy is needed do it sooner rather than later. Would you opt for a biopsy now or would you postpone it if, You're able to work full time You're able to manage a 2nd business You're able to do what you love doing (coaching youth sports) Your overall health (physical, mental, sexual) for a 47 yr old male is above average. Your day starts at 5 a.m. and you are pretty active until 10:00 p.m. or so You do not need oxygen, > > > > > > > > > > A couple of things.... > > > > > > > > > > If you're maintaining oxygen at 98% even under exertion and > > have > > > > PF > > > > > then I will deed the Pacific Ocean over to you, including > > Hawaii. > > > > I > > > > > don't mean to be funny, but thats just totally inconsistent. > > With > > > > > your PFT's your oxygen saturation has to be slipping some. > > Please > > > > > check because oxygen isn't just important for shortness of > > > breath. > > > > It > > > > > protects your organs. If they are pushing for VATS, i just > > have > > > to > > > > > believe you need or are close to needing oxygen at least for > > > > > exertion. What did your oxygen levels drop to at night? They > > did > > > > > drop. Everyone's do, even perfectly healthy. You make a > > dangerous > > > > > statement " I'm assuming that both my PC and the Pulmonologist > > do > > > > not > > > > > feel the need for it. " It's your life and you are your > medical > > > > > manager. Maybe I'm wrong completely but its a simple way to > > find > > > > out > > > > > and I can't imagine with your PFT's that your oxygen doesn't > > at > > > > least > > > > > drop to the low 90's on exertion and if it goes below 90 that > > > > means > > > > > you need oxygen. After all, what do you think gave you the > > > > symptoms > > > > > to start with? Your oxygen dropping. > > > > > > > > > > Now your percentages on your PFT's make sense. Don't have any > > > idea > > > > > why but normal for Asians is lower than Caucasians. Height > > makes > > > > more > > > > > sense to me. > > > > > > > > > > Now.....I understand not telling the kids until you know for > > > sure. > > > > > But, ultimately, honesty with everyone in your life will > > provide > > > > you > > > > > such relief and they need it too. Its a long battle and if > you > > > > can't > > > > > communicate in every way, Sharing with your wife was the most > > > > > important thing you could have done and while draining will > be > > > > > freeing to both of you. > > > > > > > > > > As to what you might or might do different after VATS. With > > UIP > > > > you > > > > > might choose not to do Imuran and Prednisone and you might > > choose > > > > to > > > > > do them with all others. Or you might do them regardless or > > not > > > do > > > > > them regardless....those are choices you'll make. > > > > > > > > > > Also, it can effect your choices of clinical trials and it > can > > > > effect > > > > > your life planning. > > > > > > > > > > One other thing. Take care of all legal matters early and > even > > > > before > > > > > VATS, such as Medical Power of Attorney, Directives, Anything > > > > dealing > > > > > with death or with incapacitation. Why? Then death is taken > > care > > > > of. > > > > > All you have to ever deal with after is life. Making the most > > of > > > > > every remaining moment whether 1 year of 50. These are things > > you > > > > > should have already done anyway. > > > > > > > > > > As to determining PF without biopsy. You can determine PF in > > > > general. > > > > > However, the accuracy of which kind is only about 60%. Early > > its > > > > > less, later its greater. The accuracy with VATS is around > 97%. > > > > Insist > > > > > the biopsies are read by more than one radiologist too. Mine > > were > > > > > also sent to Mayo Clinic. > > > > > > > > > > VATS may technically and as far as potential death be the > > > simplest > > > > > thing he does. But to you its invasive and can have > > complications > > > > and > > > > > is likely to leave you with some residual pain. Its invasive > > to > > > > have > > > > > three pieces of your lung taken. So while I'd do it again, > > don't > > > > > underestimate it, but don't overestimate it either. > > > > > > > > > > As to Imuran and Prednisone without VATS. Yes, one can just > > > assume > > > > PF > > > > > and do that. But understand Prednisone isn't a mild drug. > And, > > > > having > > > > > a VATS while you're strong instead of later is better. Plus > > > you'll > > > > > need it if you consider a biopsy. Now, if you're going to > have > > a > > > > VATS > > > > > you would not do Prednisone before as it weakens your immune > > > > system. > > > > > > > > > > Well, I'm so glad you came here. I know its overwhelming, but > > > > you're > > > > > doing an excellent job of learning and listening. We try to > be > > > > > completely honest and don't mince words. Always feel free to > > ask > > > > or > > > > > say anything. We're sorry you have to be here but welcome you > > to > > > > our > > > > > Air Family. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 First off you didn't post a name so since I don't know any millionaires, That will have to do for now.I am 65 going on 32 with 3 1/2 years since Diagnosis. You will find several other 40ish members here at different stages of this disease. Some do the OLB others the Vats. I chose not to do any of the procedures.I was diagnosed by CT, HRCT, PFT's, 6 min walk. The HRCT was very clear the type of IPF I have so no need for it. I honestly think I had this disease for a good 8 to 10 years before Dx. As to the decision, Thats really tough so consider ALL the pros and cons. Keep in mind there is so little they can do for any of the fibrosis that it will be a tough one.My Dr. did ask if I would have one and I ask what difference would that make in my treatment.So after I found the treatment isn't different I decided not to risk my life and then have to recover for heavens only knows how long. Tough call for you.Trust me if I were as healthy as you and had the Doctors you do, I would move and find a Universityteaching hospital. Your Dr's don't sound like they give a rip. You owe it to yourself to have the best you can find.This is a HARD fight. Keep in mind this Air Family is all right here behind you. You are getting close to a lot of emotions and fear so stay close, we have all been where you are.God Bless.Love and Prayers, Peggyipf 6/04Worry looks around.Sorry looks back,Faith looks up. Bruce, when can we meet to make the deed official? I would like Kerry and Beth as my witnesses. Air Family members, when Bruce comes through with this deed, you are all invited to an all expensed paid gala in Hawaii.Again, thank you all for responding. I will respond individually as soon as I can. I also have a feeling that I will stop `thanking' soon. Helping out and being there for each other appears to be a norm with the Air Family.How often can a CT scan be `safely' repeated? I have a cd that shows scattered white spots on both lungs. I did ask my Pulmonologist "can we repeat the CT scan in six months or so to see if there is increase in the white spots"? I don't recall his answer verbatim, but it was NOT an option. My current thoughts are that, if a CT scan can be repeated at its safest and earliest frequency (one-to-six months), and if there is less than five percent chance of this thing spreading quickly (before the next CT scan), then I would rather wait on the VATS.I realize it was I who started to seek out "what's going on with me". Clearly, it was the 2nd lung test reading of 35% at the health fair at my work in June 2007. It was a drop from 57% in 2005. This took me to the Pulmonologist. My first visit with him lasted for ~20 minutes. A CT scan and PFT were ordered. My second visit with him was also around 20 minutes. A biopsy was recommended. Yes, I asked a lot of questions. Biopsy seemed to be the only alternative.The initial consultation with the surgeon was on 12/03/07. It was also less then 30 minutes long. He was rather blunt with me when I started to ask questions (too many I guess); "Look I am not the Pulmonologist; I will only do the surgery". His words verbatim were "the only intelligent choice was to have the biopsy". He recommended that it be performed before X-Mas holidays. I opted to schedule the VATS as it appeared to be the only option that `may' extend my life beyond 6 months to six years. I called his office on Feb 1st to schedule the VATS. When I saw him (with my wife) for the 2nd time on Feb 5th he informed us that he would not be able to spend too much time with us. He was headed out the door to attend an emergency. He spent less than five minutes with us. Physically/Psychologically, if my condition remains as is, I would not miss much in life. Ok, I understand that it will not remain `as is' or no one can correctly predict how long it will remain as is. While Kerry has depicted otherwise, most of you are of the opinion that if biopsy is needed do it sooner rather than later. Would you opt for a biopsy now or would you postpone it if,You're able to work full timeYou're able to manage a 2nd businessYou're able to do what you love doing (coaching youth sports)Your overall health (physical, mental, sexual) for a 47 yr old male is above average.Your day starts at 5 a.m. and you are pretty active until 10:00 p.m. or soYou do not need oxygen,> > > > >> > > > > A couple of things....> > > > > > > > > > If you're maintaining oxygen at 98% even under exertion and > > have > > > > PF > > > > > then I will deed the Pacific Ocean over to you, including > > Hawaii. > > > > I > > > > > don't mean to be funny, but thats just totally inconsistent. > > With > > > > > your PFT's your oxygen saturation has to be slipping some. > > Please > > > > > check because oxygen isn't just important for shortness of > > > breath. > > > > It > > > > > protects your organs. If they are pushing for VATS, i just > > have > > > to > > > > > believe you need or are close to needing oxygen at least for > > > > > exertion. What did your oxygen levels drop to at night? They > > did > > > > > drop. Everyone's do, even perfectly healthy. You make a > > dangerous > > > > > statement "I'm assuming that both my PC and the Pulmonologist > > do > > > > not > > > > > feel the need for it." It's your life and you are your > medical > > > > > manager. Maybe I'm wrong completely but its a simple way to > > find > > > > out > > > > > and I can't imagine with your PFT's that your oxygen doesn't > > at > > > > least > > > > > drop to the low 90's on exertion and if it goes below 90 that > > > > means > > > > > you need oxygen. After all, what do you think gave you the > > > > symptoms > > > > > to start with? Your oxygen dropping.> > > > > > > > > > Now your percentages on your PFT's make sense. Don't have any > > > idea > > > > > why but normal for Asians is lower than Caucasians. Height > > makes > > > > more > > > > > sense to me. > > > > > > > > > > Now.....I understand not telling the kids until you know for > > > sure. > > > > > But, ultimately, honesty with everyone in your life will > > provide > > > > you > > > > > such relief and they need it too. Its a long battle and if > you > > > > can't > > > > > communicate in every way, Sharing with your wife was the most > > > > > important thing you could have done and while draining will > be > > > > > freeing to both of you. > > > > > > > > > > As to what you might or might do different after VATS. With > > UIP > > > > you > > > > > might choose not to do Imuran and Prednisone and you might > > choose > > > > to > > > > > do them with all others. Or you might do them regardless or > > not > > > do > > > > > them regardless....those are choices you'll make. > > > > > > > > > > Also, it can effect your choices of clinical trials and it > can > > > > effect > > > > > your life planning. > > > > > > > > > > One other thing. Take care of all legal matters early and > even > > > > before > > > > > VATS, such as Medical Power of Attorney, Directives, Anything > > > > dealing > > > > > with death or with incapacitation. Why? Then death is taken > > care > > > > of. > > > > > All you have to ever deal with after is life. Making the most > > of > > > > > every remaining moment whether 1 year of 50. These are things > > you > > > > > should have already done anyway.> > > > > > > > > > As to determining PF without biopsy. You can determine PF in > > > > general. > > > > > However, the accuracy of which kind is only about 60%. Early > > its > > > > > less, later its greater. The accuracy with VATS is around > 97%. > > > > Insist > > > > > the biopsies are read by more than one radiologist too. Mine > > were > > > > > also sent to Mayo Clinic.> > > > > > > > > > VATS may technically and as far as potential death be the > > > simplest > > > > > thing he does. But to you its invasive and can have > > complications > > > > and > > > > > is likely to leave you with some residual pain. Its invasive > > to > > > > have > > > > > three pieces of your lung taken. So while I'd do it again, > > don't > > > > > underestimate it, but don't overestimate it either. > > > > > > > > > > As to Imuran and Prednisone without VATS. Yes, one can just > > > assume > > > > PF > > > > > and do that. But understand Prednisone isn't a mild drug. > And, > > > > having > > > > > a VATS while you're strong instead of later is better. Plus > > > you'll > > > > > need it if you consider a biopsy. Now, if you're going to > have > > a > > > > VATS > > > > > you would not do Prednisone before as it weakens your immune > > > > system.> > > > > > > > > > Well, I'm so glad you came here. I know its overwhelming, but > > > > you're > > > > > doing an excellent job of learning and listening. We try to > be > > > > > completely honest and don't mince words. Always feel free to > > ask > > > > or > > > > > say anything. We're sorry you have to be here but welcome you > > to > > > > our > > > > > Air Family.> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 PS Millionaire, Thanks for the invite to Hawaii.. I am almost packed... Love and Prayers, Peggyipf 6/04Worry looks around.Sorry looks back,Faith looks up. Bruce, when can we meet to make the deed official? I would like Kerry and Beth as my witnesses. Air Family members, when Bruce comes through with this deed, you are all invited to an all expensed paid gala in Hawaii.Again, thank you all for responding. I will respond individually as soon as I can. I also have a feeling that I will stop `thanking' soon. Helping out and being there for each other appears to be a norm with the Air Family.How often can a CT scan be `safely' repeated? I have a cd that shows scattered white spots on both lungs. I did ask my Pulmonologist "can we repeat the CT scan in six months or so to see if there is increase in the white spots"? I don't recall his answer verbatim, but it was NOT an option. My current thoughts are that, if a CT scan can be repeated at its safest and earliest frequency (one-to-six months), and if there is less than five percent chance of this thing spreading quickly (before the next CT scan), then I would rather wait on the VATS.I realize it was I who started to seek out "what's going on with me". Clearly, it was the 2nd lung test reading of 35% at the health fair at my work in June 2007. It was a drop from 57% in 2005. This took me to the Pulmonologist. My first visit with him lasted for ~20 minutes. A CT scan and PFT were ordered. My second visit with him was also around 20 minutes. A biopsy was recommended. Yes, I asked a lot of questions. Biopsy seemed to be the only alternative.The initial consultation with the surgeon was on 12/03/07. It was also less then 30 minutes long. He was rather blunt with me when I started to ask questions (too many I guess); "Look I am not the Pulmonologist; I will only do the surgery". His words verbatim were "the only intelligent choice was to have the biopsy". He recommended that it be performed before X-Mas holidays. I opted to schedule the VATS as it appeared to be the only option that `may' extend my life beyond 6 months to six years. I called his office on Feb 1st to schedule the VATS. When I saw him (with my wife) for the 2nd time on Feb 5th he informed us that he would not be able to spend too much time with us. He was headed out the door to attend an emergency. He spent less than five minutes with us. Physically/Psychologically, if my condition remains as is, I would not miss much in life. Ok, I understand that it will not remain `as is' or no one can correctly predict how long it will remain as is. While Kerry has depicted otherwise, most of you are of the opinion that if biopsy is needed do it sooner rather than later. Would you opt for a biopsy now or would you postpone it if,You're able to work full timeYou're able to manage a 2nd businessYou're able to do what you love doing (coaching youth sports)Your overall health (physical, mental, sexual) for a 47 yr old male is above average.Your day starts at 5 a.m. and you are pretty active until 10:00 p.m. or soYou do not need oxygen,> > > > >> > > > > A couple of things....> > > > > > > > > > If you're maintaining oxygen at 98% even under exertion and > > have > > > > PF > > > > > then I will deed the Pacific Ocean over to you, including > > Hawaii. > > > > I > > > > > don't mean to be funny, but thats just totally inconsistent. > > With > > > > > your PFT's your oxygen saturation has to be slipping some. > > Please > > > > > check because oxygen isn't just important for shortness of > > > breath. > > > > It > > > > > protects your organs. If they are pushing for VATS, i just > > have > > > to > > > > > believe you need or are close to needing oxygen at least for > > > > > exertion. What did your oxygen levels drop to at night? They > > did > > > > > drop. Everyone's do, even perfectly healthy. You make a > > dangerous > > > > > statement "I'm assuming that both my PC and the Pulmonologist > > do > > > > not > > > > > feel the need for it." It's your life and you are your > medical > > > > > manager. Maybe I'm wrong completely but its a simple way to > > find > > > > out > > > > > and I can't imagine with your PFT's that your oxygen doesn't > > at > > > > least > > > > > drop to the low 90's on exertion and if it goes below 90 that > > > > means > > > > > you need oxygen. After all, what do you think gave you the > > > > symptoms > > > > > to start with? Your oxygen dropping.> > > > > > > > > > Now your percentages on your PFT's make sense. Don't have any > > > idea > > > > > why but normal for Asians is lower than Caucasians. Height > > makes > > > > more > > > > > sense to me. > > > > > > > > > > Now.....I understand not telling the kids until you know for > > > sure. > > > > > But, ultimately, honesty with everyone in your life will > > provide > > > > you > > > > > such relief and they need it too. Its a long battle and if > you > > > > can't > > > > > communicate in every way, Sharing with your wife was the most > > > > > important thing you could have done and while draining will > be > > > > > freeing to both of you. > > > > > > > > > > As to what you might or might do different after VATS. With > > UIP > > > > you > > > > > might choose not to do Imuran and Prednisone and you might > > choose > > > > to > > > > > do them with all others. Or you might do them regardless or > > not > > > do > > > > > them regardless....those are choices you'll make. > > > > > > > > > > Also, it can effect your choices of clinical trials and it > can > > > > effect > > > > > your life planning. > > > > > > > > > > One other thing. Take care of all legal matters early and > even > > > > before > > > > > VATS, such as Medical Power of Attorney, Directives, Anything > > > > dealing > > > > > with death or with incapacitation. Why? Then death is taken > > care > > > > of. > > > > > All you have to ever deal with after is life. Making the most > > of > > > > > every remaining moment whether 1 year of 50. These are things > > you > > > > > should have already done anyway.> > > > > > > > > > As to determining PF without biopsy. You can determine PF in > > > > general. > > > > > However, the accuracy of which kind is only about 60%. Early > > its > > > > > less, later its greater. The accuracy with VATS is around > 97%. > > > > Insist > > > > > the biopsies are read by more than one radiologist too. Mine > > were > > > > > also sent to Mayo Clinic.> > > > > > > > > > VATS may technically and as far as potential death be the > > > simplest > > > > > thing he does. But to you its invasive and can have > > complications > > > > and > > > > > is likely to leave you with some residual pain. Its invasive > > to > > > > have > > > > > three pieces of your lung taken. So while I'd do it again, > > don't > > > > > underestimate it, but don't overestimate it either. > > > > > > > > > > As to Imuran and Prednisone without VATS. Yes, one can just > > > assume > > > > PF > > > > > and do that. But understand Prednisone isn't a mild drug. > And, > > > > having > > > > > a VATS while you're strong instead of later is better. Plus > > > you'll > > > > > need it if you consider a biopsy. Now, if you're going to > have > > a > > > > VATS > > > > > you would not do Prednisone before as it weakens your immune > > > > system.> > > > > > > > > > Well, I'm so glad you came here. I know its overwhelming, but > > > > you're > > > > > doing an excellent job of learning and listening. We try to > be > > > > > completely honest and don't mince words. Always feel free to > > ask > > > > or > > > > > say anything. We're sorry you have to be here but welcome you > > to > > > > our > > > > > Air Family.> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 I agree that the only thing typical about PF is that no one is typical! Only 27% of my lungs is unaffected, yet I don't have the diagnostic crackle. Apparently there is a slight 'noise' in the bottom of my right lung, but that's been there since I was diagnosed, when I suspect that my lower right lung was the only affected part. My rhuemy at the time used to use me to get students to listen as it was so slight and could be easily missed. Also I don't exhibit clubbing yet. The doc that checked me into hospital last week however was so confident of himself that he decided that is I didn't have either of those symptoms we can't be dealing with PF. He soon changed his mind when he found out who my consultant was as she is very well respected in her field, but until then he was clinging on to the 'facts' as he knew them. Love Ze xxx > >> > A couple of things....> > > > If you're maintaining oxygen at 98% even under exertion and have > PF > > then I will deed the Pacific Ocean over to you, including Hawaii. > I > > don't mean to be funny, but thats just totally inconsistent. With > > your PFT's your oxygen saturation has to be slipping some. Please > > check because oxygen isn't just important for shortness of breath. > It > > protects your organs. If they are pushing for VATS, i just have to > > believe you need or are close to needing oxygen at least for > > exertion. What did your oxygen levels drop to at night? They did > > drop. Everyone's do, even perfectly healthy. You make a dangerous > > statement "I'm assuming that both my PC and the Pulmonologist do > not > > feel the need for it." It's your life and you are your medical > > manager. Maybe I'm wrong completely but its a simple way to find > out > > and I can't imagine with your PFT's that your oxygen doesn't at > least > > drop to the low 90's on exertion and if it goes below 90 that > means > > you need oxygen. After all, what do you think gave you the > symptoms > > to start with? Your oxygen dropping.> > > > Now your percentages on your PFT's make sense. Don't have any idea > > why but normal for Asians is lower than Caucasians. Height makes > more > > sense to me. > > > > Now.....I understand not telling the kids until you know for sure. > > But, ultimately, honesty with everyone in your life will provide > you > > such relief and they need it too. Its a long battle and if you > can't > > communicate in every way, Sharing with your wife was the most > > important thing you could have done and while draining will be > > freeing to both of you. > > > > As to what you might or might do different after VATS. With UIP > you > > might choose not to do Imuran and Prednisone and you might choose > to > > do them with all others. Or you might do them regardless or not do > > them regardless....those are choices you'll make. > > > > Also, it can effect your choices of clinical trials and it can > effect > > your life planning. > > > > One other thing. Take care of all legal matters early and even > before > > VATS, such as Medical Power of Attorney, Directives, Anything > dealing > > with death or with incapacitation. Why? Then death is taken care > of. > > All you have to ever deal with after is life. Making the most of > > every remaining moment whether 1 year of 50. These are things you > > should have already done anyway.> > > > As to determining PF without biopsy. You can determine PF in > general. > > However, the accuracy of which kind is only about 60%. Early its > > less, later its greater. The accuracy with VATS is around 97%. > Insist > > the biopsies are read by more than one radiologist too. Mine were > > also sent to Mayo Clinic.> > > > VATS may technically and as far as potential death be the simplest > > thing he does. But to you its invasive and can have complications > and > > is likely to leave you with some residual pain. Its invasive to > have > > three pieces of your lung taken. So while I'd do it again, don't > > underestimate it, but don't overestimate it either. > > > > As to Imuran and Prednisone without VATS. Yes, one can just assume > PF > > and do that. But understand Prednisone isn't a mild drug. And, > having > > a VATS while you're strong instead of later is better. Plus you'll > > need it if you consider a biopsy. Now, if you're going to have a > VATS > > you would not do Prednisone before as it weakens your immune > system.> > > > Well, I'm so glad you came here. I know its overwhelming, but > you're > > doing an excellent job of learning and listening. We try to be > > completely honest and don't mince words. Always feel free to ask > or > > say anything. We're sorry you have to be here but welcome you to > our > > Air Family.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 I'll also add that I see no purpose in invasive proceedures when the non-invasive proceedures haven't been fully explored. Love Ze x> > >> > > A couple of things....> > > > > > If you're maintaining oxygen at 98% even under exertion and have > > PF > > > then I will deed the Pacific Ocean over to you, including Hawaii. > > I > > > don't mean to be funny, but thats just totally inconsistent. With > > > your PFT's your oxygen saturation has to be slipping some. Please > > > check because oxygen isn't just important for shortness of > breath. > > It > > > protects your organs. If they are pushing for VATS, i just have > to > > > believe you need or are close to needing oxygen at least for > > > exertion. What did your oxygen levels drop to at night? They did > > > drop. Everyone's do, even perfectly healthy. You make a dangerous > > > statement "I'm assuming that both my PC and the Pulmonologist do > > not > > > feel the need for it." It's your life and you are your medical > > > manager. Maybe I'm wrong completely but its a simple way to find > > out > > > and I can't imagine with your PFT's that your oxygen doesn't at > > least > > > drop to the low 90's on exertion and if it goes below 90 that > > means > > > you need oxygen. After all, what do you think gave you the > > symptoms > > > to start with? Your oxygen dropping.> > > > > > Now your percentages on your PFT's make sense. Don't have any > idea > > > why but normal for Asians is lower than Caucasians. Height makes > > more > > > sense to me. > > > > > > Now.....I understand not telling the kids until you know for > sure. > > > But, ultimately, honesty with everyone in your life will provide > > you > > > such relief and they need it too. Its a long battle and if you > > can't > > > communicate in every way, Sharing with your wife was the most > > > important thing you could have done and while draining will be > > > freeing to both of you. > > > > > > As to what you might or might do different after VATS. With UIP > > you > > > might choose not to do Imuran and Prednisone and you might choose > > to > > > do them with all others. Or you might do them regardless or not > do > > > them regardless....those are choices you'll make. > > > > > > Also, it can effect your choices of clinical trials and it can > > effect > > > your life planning. > > > > > > One other thing. Take care of all legal matters early and even > > before > > > VATS, such as Medical Power of Attorney, Directives, Anything > > dealing > > > with death or with incapacitation. Why? Then death is taken care > > of. > > > All you have to ever deal with after is life. Making the most of > > > every remaining moment whether 1 year of 50. These are things you > > > should have already done anyway.> > > > > > As to determining PF without biopsy. You can determine PF in > > general. > > > However, the accuracy of which kind is only about 60%. Early its > > > less, later its greater. The accuracy with VATS is around 97%. > > Insist > > > the biopsies are read by more than one radiologist too. Mine were > > > also sent to Mayo Clinic.> > > > > > VATS may technically and as far as potential death be the > simplest > > > thing he does. But to you its invasive and can have complications > > and > > > is likely to leave you with some residual pain. Its invasive to > > have > > > three pieces of your lung taken. So while I'd do it again, don't > > > underestimate it, but don't overestimate it either. > > > > > > As to Imuran and Prednisone without VATS. Yes, one can just > assume > > PF > > > and do that. But understand Prednisone isn't a mild drug. And, > > having > > > a VATS while you're strong instead of later is better. Plus > you'll > > > need it if you consider a biopsy. Now, if you're going to have a > > VATS > > > you would not do Prednisone before as it weakens your immune > > system.> > > > > > Well, I'm so glad you came here. I know its overwhelming, but > > you're > > > doing an excellent job of learning and listening. We try to be > > > completely honest and don't mince words. Always feel free to ask > > or > > > say anything. We're sorry you have to be here but welcome you to > > our > > > Air Family.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Printing up deed now. Using format I already used for Brooklyn Bridge, Taj Mahal, and Buckingham Palace. Of course you have to pay my way there and I'll come with my oximeter and test. Then we'll see. lol. Of course I didn't warn you that you have quite a government to fund in Hawaii.... I really do hope to be wrong and that your oxygen stays up under exertion. However, then, I would wonder about the experiences you did have and if there is another cause. As to CT's, there is no set rule, but in six weeks, its rare you'd see much different. I've had a total of 11 CT's since June. PFT's would tell you more as to progress. Most Pulmonologists seem to repeat CT's about every six months. My new one sees no value as the saturation levels, amount of oxygen needed and the PFT's already tell you what the progression is. If you are going to do the VATS, doing it sooner is better before you do encounter any health issues. For a doctor to tell you that " the only intelligent choice is to have the biopsy " is quite narrowminded. He needs a lecture from Kerry. I chose to have the VATS but would never make such a statement. VATS is only going to provide information. Depending on your choices, this information may not even change any decisions. The big choice you face is whether to go on Imuran and Prednisone or not. You may or may not make a different decision there based on what form of PF the VATS says you have. Ultimately the second big medical decision will be whether to pursue a transplant. You snuck in not needing oxygen. Did I miss something? Did you get tested this morning under exertion? As to all those things you do, you will be able to continue them whether off or on oxygen for some period of time. None of us know how long. I am on oxygen but still do most of what I did before. Many here still work as they did before. I wouldn't be able to do that with my condition and other issues. One thing we actually gain out of the diagnosis, which may be a hard way to learn a lesson, is focus. You live your life recognizing what we all should have long ago recognized, that it is limited. You reassess decisions such as is second business more important to me now or more time with my family? Where would I really like to travel? You don't put things off. We all handle that differently too. I'm planning trips this year I wouldn't have taken, I would have put off. But, I'm living this year as if it's the last year i will be in my current health. Then if I stay stable, I'll live next year the same way. I'm willing to do that for many years, but I may not have them. I worked too much before and put too many things off. I intend to go to West Texas in late April and San in May and California in September and before any of that a long trip through Tennessee and to family in NC I haven't seen in ages. I don't mean this to sound morbid at all, but I do recognize if I put off going to see them, I might never be able to do so. I have already put it off too many years. PF is terminal but upon diagnosis death is not what this group is about. We're about living, living life as full as you can at each stage of the disease. Learning to live with the disease. Finding everything possible that helps you do so, from little things to major. If you decide to take Prednisone, this group can share experiences and warn you of the side effects. If you have the mood swings maybe time to see psychiatrist and/or counselor to get offsetting medication to stabilize and coping assistance for them. Your wife not fully informed can look for them. Weight and diabetes are issues but if you go in fully informed maybe you'll do better in controlling them. It may sound like your doctor says, diagnosis PF, prognosis death. But you watch this board and you'll see there is lot's of life. I'm enjoying mine. Oh its not perfect, but it never was. However, I'm still living to the best I can and I will as long as I can. > > > > > > > > > > > > A couple of things.... > > > > > > > > > > > > If you're maintaining oxygen at 98% even under exertion > and > > > have > > > > > PF > > > > > > then I will deed the Pacific Ocean over to you, including > > > Hawaii. > > > > > I > > > > > > don't mean to be funny, but thats just totally > inconsistent. > > > With > > > > > > your PFT's your oxygen saturation has to be slipping some. > > > Please > > > > > > check because oxygen isn't just important for shortness of > > > > breath. > > > > > It > > > > > > protects your organs. If they are pushing for VATS, i just > > > have > > > > to > > > > > > believe you need or are close to needing oxygen at least > for > > > > > > exertion. What did your oxygen levels drop to at night? > They > > > did > > > > > > drop. Everyone's do, even perfectly healthy. You make a > > > dangerous > > > > > > statement " I'm assuming that both my PC and the > Pulmonologist > > > do > > > > > not > > > > > > feel the need for it. " It's your life and you are your > > medical > > > > > > manager. Maybe I'm wrong completely but its a simple way > to > > > find > > > > > out > > > > > > and I can't imagine with your PFT's that your oxygen > doesn't > > > at > > > > > least > > > > > > drop to the low 90's on exertion and if it goes below 90 > that > > > > > means > > > > > > you need oxygen. After all, what do you think gave you the > > > > > symptoms > > > > > > to start with? Your oxygen dropping. > > > > > > > > > > > > Now your percentages on your PFT's make sense. Don't have > any > > > > idea > > > > > > why but normal for Asians is lower than Caucasians. Height > > > makes > > > > > more > > > > > > sense to me. > > > > > > > > > > > > Now.....I understand not telling the kids until you know > for > > > > sure. > > > > > > But, ultimately, honesty with everyone in your life will > > > provide > > > > > you > > > > > > such relief and they need it too. Its a long battle and if > > you > > > > > can't > > > > > > communicate in every way, Sharing with your wife was the > most > > > > > > important thing you could have done and while draining > will > > be > > > > > > freeing to both of you. > > > > > > > > > > > > As to what you might or might do different after VATS. > With > > > UIP > > > > > you > > > > > > might choose not to do Imuran and Prednisone and you might > > > choose > > > > > to > > > > > > do them with all others. Or you might do them regardless > or > > > not > > > > do > > > > > > them regardless....those are choices you'll make. > > > > > > > > > > > > Also, it can effect your choices of clinical trials and it > > can > > > > > effect > > > > > > your life planning. > > > > > > > > > > > > One other thing. Take care of all legal matters early and > > even > > > > > before > > > > > > VATS, such as Medical Power of Attorney, Directives, > Anything > > > > > dealing > > > > > > with death or with incapacitation. Why? Then death is > taken > > > care > > > > > of. > > > > > > All you have to ever deal with after is life. Making the > most > > > of > > > > > > every remaining moment whether 1 year of 50. These are > things > > > you > > > > > > should have already done anyway. > > > > > > > > > > > > As to determining PF without biopsy. You can determine PF > in > > > > > general. > > > > > > However, the accuracy of which kind is only about 60%. > Early > > > its > > > > > > less, later its greater. The accuracy with VATS is around > > 97%. > > > > > Insist > > > > > > the biopsies are read by more than one radiologist too. > Mine > > > were > > > > > > also sent to Mayo Clinic. > > > > > > > > > > > > VATS may technically and as far as potential death be the > > > > simplest > > > > > > thing he does. But to you its invasive and can have > > > complications > > > > > and > > > > > > is likely to leave you with some residual pain. Its > invasive > > > to > > > > > have > > > > > > three pieces of your lung taken. So while I'd do it again, > > > don't > > > > > > underestimate it, but don't overestimate it either. > > > > > > > > > > > > As to Imuran and Prednisone without VATS. Yes, one can > just > > > > assume > > > > > PF > > > > > > and do that. But understand Prednisone isn't a mild drug. > > And, > > > > > having > > > > > > a VATS while you're strong instead of later is better. > Plus > > > > you'll > > > > > > need it if you consider a biopsy. Now, if you're going to > > have > > > a > > > > > VATS > > > > > > you would not do Prednisone before as it weakens your > immune > > > > > system. > > > > > > > > > > > > Well, I'm so glad you came here. I know its overwhelming, > but > > > > > you're > > > > > > doing an excellent job of learning and listening. We try > to > > be > > > > > > completely honest and don't mince words. Always feel free > to > > > ask > > > > > or > > > > > > say anything. We're sorry you have to be here but welcome > you > > > to > > > > > our > > > > > > Air Family. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 I was your age when first introduced to PF, 12 years ago. My journey started with a trip to the hospital with " pneumonia " then it was " CHF " and then " ARDS " . I was in there for 2 weeks, half in CCU. I didn't even have a lung doc then. Like so many here I had found myself becoming short of breath doing things I'd always loved and done, walking, dancing, etc. and just attributed it to getting older and out of shape and maybe the return of childhood asthma. As Bruce has mentioned in one of his posts there are many forms of this disease but at the time I was diagnosed there weren't so many and I truly was an " odd duck " . When I left the hospital I was on O2. I knew nothing about what was wrong with me but when I had to go downstairs from my office/apartment I had to stop, sit down and rest. No oximeter at that time for me. Within 30 days I was back in the hospital. That is when I had the VATS. I was told about possible side effects, etc. but I didn't know I had a choice. They were searching, searching, searching. The results were inconclusive but they did suggest hypersensitivity pneumonitis (hp) with secondary PF. In a way I was lucky that I didn't have to make so many decisions about my care at that time. Less was known and after my dx of HP I was assured I would be " cured " . Because of that I didn't question medications in the beginning. It took close to two years before it became apparent that I wasn't going to be cured and I better start learning everything I could on my own. Only you can decide whether the VATS is for you or not. Your description of your life could have been mine until my first hospitalization (except I'm female). In retrospect, if given a choice about the VATS I still would have it. Others on the board are much more knowledgeable and up to date than I am. I will pray for wisdom and strength for you and your family. May God bless you. Kathie NSIP '96 PH '03, Brochiectasis '05 > > > > > > > > > > > > A couple of things.... > > > > > > > > > > > > If you're maintaining oxygen at 98% even under exertion > and > > > have > > > > > PF > > > > > > then I will deed the Pacific Ocean over to you, including > > > Hawaii. > > > > > I > > > > > > don't mean to be funny, but thats just totally > inconsistent. > > > With > > > > > > your PFT's your oxygen saturation has to be slipping some. > > > Please > > > > > > check because oxygen isn't just important for shortness of > > > > breath. > > > > > It > > > > > > protects your organs. If they are pushing for VATS, i just > > > have > > > > to > > > > > > believe you need or are close to needing oxygen at least > for > > > > > > exertion. What did your oxygen levels drop to at night? > They > > > did > > > > > > drop. Everyone's do, even perfectly healthy. You make a > > > dangerous > > > > > > statement " I'm assuming that both my PC and the > Pulmonologist > > > do > > > > > not > > > > > > feel the need for it. " It's your life and you are your > > medical > > > > > > manager. Maybe I'm wrong completely but its a simple way > to > > > find > > > > > out > > > > > > and I can't imagine with your PFT's that your oxygen > doesn't > > > at > > > > > least > > > > > > drop to the low 90's on exertion and if it goes below 90 > that > > > > > means > > > > > > you need oxygen. After all, what do you think gave you the > > > > > symptoms > > > > > > to start with? Your oxygen dropping. > > > > > > > > > > > > Now your percentages on your PFT's make sense. Don't have > any > > > > idea > > > > > > why but normal for Asians is lower than Caucasians. Height > > > makes > > > > > more > > > > > > sense to me. > > > > > > > > > > > > Now.....I understand not telling the kids until you know > for > > > > sure. > > > > > > But, ultimately, honesty with everyone in your life will > > > provide > > > > > you > > > > > > such relief and they need it too. Its a long battle and if > > you > > > > > can't > > > > > > communicate in every way, Sharing with your wife was the > most > > > > > > important thing you could have done and while draining > will > > be > > > > > > freeing to both of you. > > > > > > > > > > > > As to what you might or might do different after VATS. > With > > > UIP > > > > > you > > > > > > might choose not to do Imuran and Prednisone and you might > > > choose > > > > > to > > > > > > do them with all others. Or you might do them regardless > or > > > not > > > > do > > > > > > them regardless....those are choices you'll make. > > > > > > > > > > > > Also, it can effect your choices of clinical trials and it > > can > > > > > effect > > > > > > your life planning. > > > > > > > > > > > > One other thing. Take care of all legal matters early and > > even > > > > > before > > > > > > VATS, such as Medical Power of Attorney, Directives, > Anything > > > > > dealing > > > > > > with death or with incapacitation. Why? Then death is > taken > > > care > > > > > of. > > > > > > All you have to ever deal with after is life. Making the > most > > > of > > > > > > every remaining moment whether 1 year of 50. These are > things > > > you > > > > > > should have already done anyway. > > > > > > > > > > > > As to determining PF without biopsy. You can determine PF > in > > > > > general. > > > > > > However, the accuracy of which kind is only about 60%. > Early > > > its > > > > > > less, later its greater. The accuracy with VATS is around > > 97%. > > > > > Insist > > > > > > the biopsies are read by more than one radiologist too. > Mine > > > were > > > > > > also sent to Mayo Clinic. > > > > > > > > > > > > VATS may technically and as far as potential death be the > > > > simplest > > > > > > thing he does. But to you its invasive and can have > > > complications > > > > > and > > > > > > is likely to leave you with some residual pain. Its > invasive > > > to > > > > > have > > > > > > three pieces of your lung taken. So while I'd do it again, > > > don't > > > > > > underestimate it, but don't overestimate it either. > > > > > > > > > > > > As to Imuran and Prednisone without VATS. Yes, one can > just > > > > assume > > > > > PF > > > > > > and do that. But understand Prednisone isn't a mild drug. > > And, > > > > > having > > > > > > a VATS while you're strong instead of later is better. > Plus > > > > you'll > > > > > > need it if you consider a biopsy. Now, if you're going to > > have > > > a > > > > > VATS > > > > > > you would not do Prednisone before as it weakens your > immune > > > > > system. > > > > > > > > > > > > Well, I'm so glad you came here. I know its overwhelming, > but > > > > > you're > > > > > > doing an excellent job of learning and listening. We try > to > > be > > > > > > completely honest and don't mince words. Always feel free > to > > > ask > > > > > or > > > > > > say anything. We're sorry you have to be here but welcome > you > > > to > > > > > our > > > > > > Air Family. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 I could send you some crackle. Pulmonologist laughed when he said, well, I have to put you on table and examine. Sort of a rule. Then he listens. Oh, big surprise, I hear crackling, he laughs. > > > > > > A couple of things.... > > > > > > If you're maintaining oxygen at 98% even under exertion and have > > PF > > > then I will deed the Pacific Ocean over to you, including Hawaii. > > I > > > don't mean to be funny, but thats just totally inconsistent. With > > > your PFT's your oxygen saturation has to be slipping some. Please > > > check because oxygen isn't just important for shortness of breath. > > It > > > protects your organs. If they are pushing for VATS, i just have to > > > believe you need or are close to needing oxygen at least for > > > exertion. What did your oxygen levels drop to at night? They did > > > drop. Everyone's do, even perfectly healthy. You make a dangerous > > > statement " I'm assuming that both my PC and the Pulmonologist do > > not > > > feel the need for it. " It's your life and you are your medical > > > manager. Maybe I'm wrong completely but its a simple way to find > > out > > > and I can't imagine with your PFT's that your oxygen doesn't at > > least > > > drop to the low 90's on exertion and if it goes below 90 that > > means > > > you need oxygen. After all, what do you think gave you the > > symptoms > > > to start with? Your oxygen dropping. > > > > > > Now your percentages on your PFT's make sense. Don't have any idea > > > why but normal for Asians is lower than Caucasians. Height makes > > more > > > sense to me. > > > > > > Now.....I understand not telling the kids until you know for sure. > > > But, ultimately, honesty with everyone in your life will provide > > you > > > such relief and they need it too. Its a long battle and if you > > can't > > > communicate in every way, Sharing with your wife was the most > > > important thing you could have done and while draining will be > > > freeing to both of you. > > > > > > As to what you might or might do different after VATS. With UIP > > you > > > might choose not to do Imuran and Prednisone and you might choose > > to > > > do them with all others. Or you might do them regardless or not do > > > them regardless....those are choices you'll make. > > > > > > Also, it can effect your choices of clinical trials and it can > > effect > > > your life planning. > > > > > > One other thing. Take care of all legal matters early and even > > before > > > VATS, such as Medical Power of Attorney, Directives, Anything > > dealing > > > with death or with incapacitation. Why? Then death is taken care > > of. > > > All you have to ever deal with after is life. Making the most of > > > every remaining moment whether 1 year of 50. These are things you > > > should have already done anyway. > > > > > > As to determining PF without biopsy. You can determine PF in > > general. > > > However, the accuracy of which kind is only about 60%. Early its > > > less, later its greater. The accuracy with VATS is around 97%. > > Insist > > > the biopsies are read by more than one radiologist too. Mine were > > > also sent to Mayo Clinic. > > > > > > VATS may technically and as far as potential death be the simplest > > > thing he does. But to you its invasive and can have complications > > and > > > is likely to leave you with some residual pain. Its invasive to > > have > > > three pieces of your lung taken. So while I'd do it again, don't > > > underestimate it, but don't overestimate it either. > > > > > > As to Imuran and Prednisone without VATS. Yes, one can just assume > > PF > > > and do that. But understand Prednisone isn't a mild drug. And, > > having > > > a VATS while you're strong instead of later is better. Plus you'll > > > need it if you consider a biopsy. Now, if you're going to have a > > VATS > > > you would not do Prednisone before as it weakens your immune > > system. > > > > > > Well, I'm so glad you came here. I know its overwhelming, but > > you're > > > doing an excellent job of learning and listening. We try to be > > > completely honest and don't mince words. Always feel free to ask > > or > > > say anything. We're sorry you have to be here but welcome you to > > our > > > Air Family. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Bruce, I'm headed to AZ soon, do you have any beachfront property there? I hope you have a happy day. Kathie WA NSIP 96 > > > > > > > > > > > > > > A couple of things.... > > > > > > > > > > > > > > If you're maintaining oxygen at 98% even under exertion > > and > > > > have > > > > > > PF > > > > > > > then I will deed the Pacific Ocean over to you, including > > > > Hawaii. > > > > > > I > > > > > > > don't mean to be funny, but thats just totally > > inconsistent. > > > > With > > > > > > > your PFT's your oxygen saturation has to be slipping > some. > > > > Please > > > > > > > check because oxygen isn't just important for shortness > of > > > > > breath. > > > > > > It > > > > > > > protects your organs. If they are pushing for VATS, i > just > > > > have > > > > > to > > > > > > > believe you need or are close to needing oxygen at least > > for > > > > > > > exertion. What did your oxygen levels drop to at night? > > They > > > > did > > > > > > > drop. Everyone's do, even perfectly healthy. You make a > > > > dangerous > > > > > > > statement " I'm assuming that both my PC and the > > Pulmonologist > > > > do > > > > > > not > > > > > > > feel the need for it. " It's your life and you are your > > > medical > > > > > > > manager. Maybe I'm wrong completely but its a simple way > > to > > > > find > > > > > > out > > > > > > > and I can't imagine with your PFT's that your oxygen > > doesn't > > > > at > > > > > > least > > > > > > > drop to the low 90's on exertion and if it goes below 90 > > that > > > > > > means > > > > > > > you need oxygen. After all, what do you think gave you > the > > > > > > symptoms > > > > > > > to start with? Your oxygen dropping. > > > > > > > > > > > > > > Now your percentages on your PFT's make sense. Don't have > > any > > > > > idea > > > > > > > why but normal for Asians is lower than Caucasians. > Height > > > > makes > > > > > > more > > > > > > > sense to me. > > > > > > > > > > > > > > Now.....I understand not telling the kids until you know > > for > > > > > sure. > > > > > > > But, ultimately, honesty with everyone in your life will > > > > provide > > > > > > you > > > > > > > such relief and they need it too. Its a long battle and > if > > > you > > > > > > can't > > > > > > > communicate in every way, Sharing with your wife was the > > most > > > > > > > important thing you could have done and while draining > > will > > > be > > > > > > > freeing to both of you. > > > > > > > > > > > > > > As to what you might or might do different after VATS. > > With > > > > UIP > > > > > > you > > > > > > > might choose not to do Imuran and Prednisone and you > might > > > > choose > > > > > > to > > > > > > > do them with all others. Or you might do them regardless > > or > > > > not > > > > > do > > > > > > > them regardless....those are choices you'll make. > > > > > > > > > > > > > > Also, it can effect your choices of clinical trials and > it > > > can > > > > > > effect > > > > > > > your life planning. > > > > > > > > > > > > > > One other thing. Take care of all legal matters early and > > > even > > > > > > before > > > > > > > VATS, such as Medical Power of Attorney, Directives, > > Anything > > > > > > dealing > > > > > > > with death or with incapacitation. Why? Then death is > > taken > > > > care > > > > > > of. > > > > > > > All you have to ever deal with after is life. Making the > > most > > > > of > > > > > > > every remaining moment whether 1 year of 50. These are > > things > > > > you > > > > > > > should have already done anyway. > > > > > > > > > > > > > > As to determining PF without biopsy. You can determine PF > > in > > > > > > general. > > > > > > > However, the accuracy of which kind is only about 60%. > > Early > > > > its > > > > > > > less, later its greater. The accuracy with VATS is around > > > 97%. > > > > > > Insist > > > > > > > the biopsies are read by more than one radiologist too. > > Mine > > > > were > > > > > > > also sent to Mayo Clinic. > > > > > > > > > > > > > > VATS may technically and as far as potential death be the > > > > > simplest > > > > > > > thing he does. But to you its invasive and can have > > > > complications > > > > > > and > > > > > > > is likely to leave you with some residual pain. Its > > invasive > > > > to > > > > > > have > > > > > > > three pieces of your lung taken. So while I'd do it > again, > > > > don't > > > > > > > underestimate it, but don't overestimate it either. > > > > > > > > > > > > > > As to Imuran and Prednisone without VATS. Yes, one can > > just > > > > > assume > > > > > > PF > > > > > > > and do that. But understand Prednisone isn't a mild drug. > > > And, > > > > > > having > > > > > > > a VATS while you're strong instead of later is better. > > Plus > > > > > you'll > > > > > > > need it if you consider a biopsy. Now, if you're going to > > > have > > > > a > > > > > > VATS > > > > > > > you would not do Prednisone before as it weakens your > > immune > > > > > > system. > > > > > > > > > > > > > > Well, I'm so glad you came here. I know its overwhelming, > > but > > > > > > you're > > > > > > > doing an excellent job of learning and listening. We try > > to > > > be > > > > > > > completely honest and don't mince words. Always feel free > > to > > > > ask > > > > > > or > > > > > > > say anything. We're sorry you have to be here but welcome > > you > > > > to > > > > > > our > > > > > > > Air Family. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Oh yes.....some perfect timeshare.....only $10 million per unit and I'll print some deeds and send right to you....got beach and mountain. You can see five oceans and 46 states from your penthouse roof. > > > > > > > > > > > > > > > > A couple of things.... > > > > > > > > > > > > > > > > If you're maintaining oxygen at 98% even under exertion > > > and > > > > > have > > > > > > > PF > > > > > > > > then I will deed the Pacific Ocean over to you, > including > > > > > Hawaii. > > > > > > > I > > > > > > > > don't mean to be funny, but thats just totally > > > inconsistent. > > > > > With > > > > > > > > your PFT's your oxygen saturation has to be slipping > > some. > > > > > Please > > > > > > > > check because oxygen isn't just important for shortness > > of > > > > > > breath. > > > > > > > It > > > > > > > > protects your organs. If they are pushing for VATS, i > > just > > > > > have > > > > > > to > > > > > > > > believe you need or are close to needing oxygen at > least > > > for > > > > > > > > exertion. What did your oxygen levels drop to at night? > > > They > > > > > did > > > > > > > > drop. Everyone's do, even perfectly healthy. You make a > > > > > dangerous > > > > > > > > statement " I'm assuming that both my PC and the > > > Pulmonologist > > > > > do > > > > > > > not > > > > > > > > feel the need for it. " It's your life and you are your > > > > medical > > > > > > > > manager. Maybe I'm wrong completely but its a simple > way > > > to > > > > > find > > > > > > > out > > > > > > > > and I can't imagine with your PFT's that your oxygen > > > doesn't > > > > > at > > > > > > > least > > > > > > > > drop to the low 90's on exertion and if it goes below > 90 > > > that > > > > > > > means > > > > > > > > you need oxygen. After all, what do you think gave you > > the > > > > > > > symptoms > > > > > > > > to start with? Your oxygen dropping. > > > > > > > > > > > > > > > > Now your percentages on your PFT's make sense. Don't > have > > > any > > > > > > idea > > > > > > > > why but normal for Asians is lower than Caucasians. > > Height > > > > > makes > > > > > > > more > > > > > > > > sense to me. > > > > > > > > > > > > > > > > Now.....I understand not telling the kids until you > know > > > for > > > > > > sure. > > > > > > > > But, ultimately, honesty with everyone in your life > will > > > > > provide > > > > > > > you > > > > > > > > such relief and they need it too. Its a long battle and > > if > > > > you > > > > > > > can't > > > > > > > > communicate in every way, Sharing with your wife was > the > > > most > > > > > > > > important thing you could have done and while draining > > > will > > > > be > > > > > > > > freeing to both of you. > > > > > > > > > > > > > > > > As to what you might or might do different after VATS. > > > With > > > > > UIP > > > > > > > you > > > > > > > > might choose not to do Imuran and Prednisone and you > > might > > > > > choose > > > > > > > to > > > > > > > > do them with all others. Or you might do them > regardless > > > or > > > > > not > > > > > > do > > > > > > > > them regardless....those are choices you'll make. > > > > > > > > > > > > > > > > Also, it can effect your choices of clinical trials and > > it > > > > can > > > > > > > effect > > > > > > > > your life planning. > > > > > > > > > > > > > > > > One other thing. Take care of all legal matters early > and > > > > even > > > > > > > before > > > > > > > > VATS, such as Medical Power of Attorney, Directives, > > > Anything > > > > > > > dealing > > > > > > > > with death or with incapacitation. Why? Then death is > > > taken > > > > > care > > > > > > > of. > > > > > > > > All you have to ever deal with after is life. Making > the > > > most > > > > > of > > > > > > > > every remaining moment whether 1 year of 50. These are > > > things > > > > > you > > > > > > > > should have already done anyway. > > > > > > > > > > > > > > > > As to determining PF without biopsy. You can determine > PF > > > in > > > > > > > general. > > > > > > > > However, the accuracy of which kind is only about 60%. > > > Early > > > > > its > > > > > > > > less, later its greater. The accuracy with VATS is > around > > > > 97%. > > > > > > > Insist > > > > > > > > the biopsies are read by more than one radiologist too. > > > Mine > > > > > were > > > > > > > > also sent to Mayo Clinic. > > > > > > > > > > > > > > > > VATS may technically and as far as potential death be > the > > > > > > simplest > > > > > > > > thing he does. But to you its invasive and can have > > > > > complications > > > > > > > and > > > > > > > > is likely to leave you with some residual pain. Its > > > invasive > > > > > to > > > > > > > have > > > > > > > > three pieces of your lung taken. So while I'd do it > > again, > > > > > don't > > > > > > > > underestimate it, but don't overestimate it either. > > > > > > > > > > > > > > > > As to Imuran and Prednisone without VATS. Yes, one can > > > just > > > > > > assume > > > > > > > PF > > > > > > > > and do that. But understand Prednisone isn't a mild > drug. > > > > And, > > > > > > > having > > > > > > > > a VATS while you're strong instead of later is better. > > > Plus > > > > > > you'll > > > > > > > > need it if you consider a biopsy. Now, if you're going > to > > > > have > > > > > a > > > > > > > VATS > > > > > > > > you would not do Prednisone before as it weakens your > > > immune > > > > > > > system. > > > > > > > > > > > > > > > > Well, I'm so glad you came here. I know its > overwhelming, > > > but > > > > > > > you're > > > > > > > > doing an excellent job of learning and listening. We > try > > > to > > > > be > > > > > > > > completely honest and don't mince words. Always feel > free > > > to > > > > > ask > > > > > > > or > > > > > > > > say anything. We're sorry you have to be here but > welcome > > > you > > > > > to > > > > > > > our > > > > > > > > Air Family. > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 I've had my ct scans 3 months apart. Also I was told that the white spots on my normal tissue were cross-sections of bloodvessels. The scarred and diseased areas looked more like a kids scribble.> > > > > >> > > > > > A couple of things....> > > > > > > > > > > > If you're maintaining oxygen at 98% even under exertion > and > > > have > > > > > PF > > > > > > then I will deed the Pacific Ocean over to you, including > > > Hawaii. > > > > > I > > > > > > don't mean to be funny, but thats just totally > inconsistent. > > > With > > > > > > your PFT's your oxygen saturation has to be slipping some. > > > Please > > > > > > check because oxygen isn't just important for shortness of > > > > breath. > > > > > It > > > > > > protects your organs. If they are pushing for VATS, i just > > > have > > > > to > > > > > > believe you need or are close to needing oxygen at least > for > > > > > > exertion. What did your oxygen levels drop to at night? > They > > > did > > > > > > drop. Everyone's do, even perfectly healthy. You make a > > > dangerous > > > > > > statement "I'm assuming that both my PC and the > Pulmonologist > > > do > > > > > not > > > > > > feel the need for it." It's your life and you are your > > medical > > > > > > manager. Maybe I'm wrong completely but its a simple way > to > > > find > > > > > out > > > > > > and I can't imagine with your PFT's that your oxygen > doesn't > > > at > > > > > least > > > > > > drop to the low 90's on exertion and if it goes below 90 > that > > > > > means > > > > > > you need oxygen. After all, what do you think gave you the > > > > > symptoms > > > > > > to start with? Your oxygen dropping.> > > > > > > > > > > > Now your percentages on your PFT's make sense. Don't have > any > > > > idea > > > > > > why but normal for Asians is lower than Caucasians. Height > > > makes > > > > > more > > > > > > sense to me. > > > > > > > > > > > > Now.....I understand not telling the kids until you know > for > > > > sure. > > > > > > But, ultimately, honesty with everyone in your life will > > > provide > > > > > you > > > > > > such relief and they need it too. Its a long battle and if > > you > > > > > can't > > > > > > communicate in every way, Sharing with your wife was the > most > > > > > > important thing you could have done and while draining > will > > be > > > > > > freeing to both of you. > > > > > > > > > > > > As to what you might or might do different after VATS. > With > > > UIP > > > > > you > > > > > > might choose not to do Imuran and Prednisone and you might > > > choose > > > > > to > > > > > > do them with all others. Or you might do them regardless > or > > > not > > > > do > > > > > > them regardless....those are choices you'll make. > > > > > > > > > > > > Also, it can effect your choices of clinical trials and it > > can > > > > > effect > > > > > > your life planning. > > > > > > > > > > > > One other thing. Take care of all legal matters early and > > even > > > > > before > > > > > > VATS, such as Medical Power of Attorney, Directives, > Anything > > > > > dealing > > > > > > with death or with incapacitation. Why? Then death is > taken > > > care > > > > > of. > > > > > > All you have to ever deal with after is life. Making the > most > > > of > > > > > > every remaining moment whether 1 year of 50. These are > things > > > you > > > > > > should have already done anyway.> > > > > > > > > > > > As to determining PF without biopsy. You can determine PF > in > > > > > general. > > > > > > However, the accuracy of which kind is only about 60%. > Early > > > its > > > > > > less, later its greater. The accuracy with VATS is around > > 97%. > > > > > Insist > > > > > > the biopsies are read by more than one radiologist too. > Mine > > > were > > > > > > also sent to Mayo Clinic.> > > > > > > > > > > > VATS may technically and as far as potential death be the > > > > simplest > > > > > > thing he does. But to you its invasive and can have > > > complications > > > > > and > > > > > > is likely to leave you with some residual pain. Its > invasive > > > to > > > > > have > > > > > > three pieces of your lung taken. So while I'd do it again, > > > don't > > > > > > underestimate it, but don't overestimate it either. > > > > > > > > > > > > As to Imuran and Prednisone without VATS. Yes, one can > just > > > > assume > > > > > PF > > > > > > and do that. But understand Prednisone isn't a mild drug. > > And, > > > > > having > > > > > > a VATS while you're strong instead of later is better. > Plus > > > > you'll > > > > > > need it if you consider a biopsy. Now, if you're going to > > have > > > a > > > > > VATS > > > > > > you would not do Prednisone before as it weakens your > immune > > > > > system.> > > > > > > > > > > > Well, I'm so glad you came here. I know its overwhelming, > but > > > > > you're > > > > > > doing an excellent job of learning and listening. We try > to > > be > > > > > > completely honest and don't mince words. Always feel free > to > > > ask > > > > > or > > > > > > say anything. We're sorry you have to be here but welcome > you > > > to > > > > > our > > > > > > Air Family.> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Purrrrrrfect! I'll take 2! Kathie > > > > > > > > > > > > > > > > > > A couple of things.... > > > > > > > > > > > > > > > > > > If you're maintaining oxygen at 98% even under > exertion > > > > and > > > > > > have > > > > > > > > PF > > > > > > > > > then I will deed the Pacific Ocean over to you, > > including > > > > > > Hawaii. > > > > > > > > I > > > > > > > > > don't mean to be funny, but thats just totally > > > > inconsistent. > > > > > > With > > > > > > > > > your PFT's your oxygen saturation has to be slipping > > > some. > > > > > > Please > > > > > > > > > check because oxygen isn't just important for > shortness > > > of > > > > > > > breath. > > > > > > > > It > > > > > > > > > protects your organs. If they are pushing for VATS, i > > > just > > > > > > have > > > > > > > to > > > > > > > > > believe you need or are close to needing oxygen at > > least > > > > for > > > > > > > > > exertion. What did your oxygen levels drop to at > night? > > > > They > > > > > > did > > > > > > > > > drop. Everyone's do, even perfectly healthy. You make > a > > > > > > dangerous > > > > > > > > > statement " I'm assuming that both my PC and the > > > > Pulmonologist > > > > > > do > > > > > > > > not > > > > > > > > > feel the need for it. " It's your life and you are > your > > > > > medical > > > > > > > > > manager. Maybe I'm wrong completely but its a simple > > way > > > > to > > > > > > find > > > > > > > > out > > > > > > > > > and I can't imagine with your PFT's that your oxygen > > > > doesn't > > > > > > at > > > > > > > > least > > > > > > > > > drop to the low 90's on exertion and if it goes below > > 90 > > > > that > > > > > > > > means > > > > > > > > > you need oxygen. After all, what do you think gave > you > > > the > > > > > > > > symptoms > > > > > > > > > to start with? Your oxygen dropping. > > > > > > > > > > > > > > > > > > Now your percentages on your PFT's make sense. Don't > > have > > > > any > > > > > > > idea > > > > > > > > > why but normal for Asians is lower than Caucasians. > > > Height > > > > > > makes > > > > > > > > more > > > > > > > > > sense to me. > > > > > > > > > > > > > > > > > > Now.....I understand not telling the kids until you > > know > > > > for > > > > > > > sure. > > > > > > > > > But, ultimately, honesty with everyone in your life > > will > > > > > > provide > > > > > > > > you > > > > > > > > > such relief and they need it too. Its a long battle > and > > > if > > > > > you > > > > > > > > can't > > > > > > > > > communicate in every way, Sharing with your wife was > > the > > > > most > > > > > > > > > important thing you could have done and while > draining > > > > will > > > > > be > > > > > > > > > freeing to both of you. > > > > > > > > > > > > > > > > > > As to what you might or might do different after > VATS. > > > > With > > > > > > UIP > > > > > > > > you > > > > > > > > > might choose not to do Imuran and Prednisone and you > > > might > > > > > > choose > > > > > > > > to > > > > > > > > > do them with all others. Or you might do them > > regardless > > > > or > > > > > > not > > > > > > > do > > > > > > > > > them regardless....those are choices you'll make. > > > > > > > > > > > > > > > > > > Also, it can effect your choices of clinical trials > and > > > it > > > > > can > > > > > > > > effect > > > > > > > > > your life planning. > > > > > > > > > > > > > > > > > > One other thing. Take care of all legal matters early > > and > > > > > even > > > > > > > > before > > > > > > > > > VATS, such as Medical Power of Attorney, Directives, > > > > Anything > > > > > > > > dealing > > > > > > > > > with death or with incapacitation. Why? Then death is > > > > taken > > > > > > care > > > > > > > > of. > > > > > > > > > All you have to ever deal with after is life. Making > > the > > > > most > > > > > > of > > > > > > > > > every remaining moment whether 1 year of 50. These > are > > > > things > > > > > > you > > > > > > > > > should have already done anyway. > > > > > > > > > > > > > > > > > > As to determining PF without biopsy. You can > determine > > PF > > > > in > > > > > > > > general. > > > > > > > > > However, the accuracy of which kind is only about > 60%. > > > > Early > > > > > > its > > > > > > > > > less, later its greater. The accuracy with VATS is > > around > > > > > 97%. > > > > > > > > Insist > > > > > > > > > the biopsies are read by more than one radiologist > too. > > > > Mine > > > > > > were > > > > > > > > > also sent to Mayo Clinic. > > > > > > > > > > > > > > > > > > VATS may technically and as far as potential death be > > the > > > > > > > simplest > > > > > > > > > thing he does. But to you its invasive and can have > > > > > > complications > > > > > > > > and > > > > > > > > > is likely to leave you with some residual pain. Its > > > > invasive > > > > > > to > > > > > > > > have > > > > > > > > > three pieces of your lung taken. So while I'd do it > > > again, > > > > > > don't > > > > > > > > > underestimate it, but don't overestimate it either. > > > > > > > > > > > > > > > > > > As to Imuran and Prednisone without VATS. Yes, one > can > > > > just > > > > > > > assume > > > > > > > > PF > > > > > > > > > and do that. But understand Prednisone isn't a mild > > drug. > > > > > And, > > > > > > > > having > > > > > > > > > a VATS while you're strong instead of later is > better. > > > > Plus > > > > > > > you'll > > > > > > > > > need it if you consider a biopsy. Now, if you're > going > > to > > > > > have > > > > > > a > > > > > > > > VATS > > > > > > > > > you would not do Prednisone before as it weakens your > > > > immune > > > > > > > > system. > > > > > > > > > > > > > > > > > > Well, I'm so glad you came here. I know its > > overwhelming, > > > > but > > > > > > > > you're > > > > > > > > > doing an excellent job of learning and listening. We > > try > > > > to > > > > > be > > > > > > > > > completely honest and don't mince words. Always feel > > free > > > > to > > > > > > ask > > > > > > > > or > > > > > > > > > say anything. We're sorry you have to be here but > > welcome > > > > you > > > > > > to > > > > > > > > our > > > > > > > > > Air Family. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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