Guest guest Posted January 26, 2008 Report Share Posted January 26, 2008 Don't think there is a way to see them if one is viewing on the web, although I could be wrong. I still receive digests even though I do all my reading on the web and I am able to see them there. They are being sent as email attachments so only readable through email I believe. A little flaw in the system. So, where possible, posting them in photo album and telling us to look works better for all. > > Kathie, > I've got the same problem - I can look at the photo > albums, but when someone posts a photo with their > e-mail, it doesn't go through for me. hmmmm. Also > some of the jokes, etc. that are shown as attachments > don't go through. > > Hugs, > Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Yes, do you really think there are over 200 forms? Or are there a couple but they present and manifest themselves in many ways. UIP/ILD wasn't broken out pathologically at one time until they did decide it had very distinctive differences from all the others. I sure don't think they're going to have to come up with 200 different treatments. I think they'll keep expanding the list until they understand it and then it will come back to a couple of diseases, some of which can be different in different persons but are basically the same and treated the same. > > > > > > > > > > > > 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 think you are right but in the mean time I'll try most things but if the treatment makes me miserable, there is no point in continuing it. Whatever time I have left I want to enjoy! 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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