Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 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...
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