Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Best of luck on you tests this week. It is nice to have you posting again. We all get attached to each other lives, the ups, the downs, the ins and the outs. I hope we all have more ups than downs P P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 Thanks Kerry. I agree between you and I we exemplify the far ends of the spectrum as far as manifestation of this illness goes. I worked a full day on Friday 5/26/06 in my office and by the evening of Monday 5/29/06 I was in the ICU in full congestive heart failure, respiratory failure, my sats dropping into the 70's when I did something as small as lift my butt onto the bedpan. And that was with 5 lpm continuous O2. I have to admit that I did have some idea that something was wrong in the weeks leading up to this but who thinks some fatigue and shortness of breath at age 46 is necessarily life threatening? It really was a pretty dramatic onset. That's why I thank God for the prednisone As miserable a drug as it is, I probably wouldn't still be here if I hadn't taken it. But I'm fully cognizant of the fact that it is only effective in a limited number of circumstances. Part of the problem though is that you can't always tell who it will help before hand. Once again, there are no absolutes. That's part of what makes this group so wonderful. We all have to make our own tough decisions and then live with the consequences. The good part is we get to come here and feel loved and cared for regardless. I hate this disease but I love everyone here! Beth in NC age 48 Fibrotic NSIP 06/06 "For as long as I shall live, I will testify to Love." Re: I'll take that deed 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.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 Let's all give Kerry a hug. She has been our eyes, ears, hands and voice in reaching out and visiting Joyce and really going beyond the call of duty. I know it wasn't easy but done out of love and one couldn't have stopped her with a bulldozer nor would one have wanted to. However, now she needs our thoughts and support with her tests. > > Best of luck on you tests this week. It is nice to have you posting again. We all get attached to each other lives, the ups, the downs, the ins and the outs. I hope we all have more ups than downs P > > > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59 > > --------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 You know...one thing I wish could be done with prednisone is provide the patient with more automatic support. At least upon introduction have someone working with you to keep a check on your mood, maybe provide another med to smooth it if necessary, and provide someone to help with weight, blood sugar, and all those issues. Recognize its risks so don't leave the patient out there alone. > > > > > > 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, You are spot on with that. If I had known then what I know now, I would have done the same things only differently, like with basic information! 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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