Guest guest Posted June 7, 2008 Report Share Posted June 7, 2008 -Thank you mary-Beth, the problem seems to have resolved itself, thank you once again. Geeta -- In Breathe-Support , Beth wrote: > > Geeta, > Good morning! I'm sorry you've been having problems with Yahoo. Have you contacted Yahoo about the problem you're having? I had issues the other day that seem to have been fixed now. Unfortunately I don't have the power to send you digests. Ican only forward individual messages and it would be very time consuming for me to forward every message sent to the board for the last day or so. What I would suggest is that you can read the posts directly from the board. Here is the link to that area of the board. > http://health.groups.yahoo.com/group/Breathe-Support/messages > I hope that your email issues are resolved soon. > Beth > Co-Moderator > Age 48 Fibrotic NSIP 06/06 > > Change everything. Love and Forgive > > > > > > (unknown) > > > > Beth > all my mails have come blank today, something wrong > with yahoo mail. Please send me digests nos.3969 to > the most recent one , I think we have reached 3973 > thanks and regards. > Geeta > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 Lou, Your signature from your Yahoo email is only going be on your posts if you actually post to the board from your Yahoo email. If you post from the group website, you're correct there is no place to automatically add a saved signature. It's a little confusing I know but if you want to post directly from your Yahoo email, the signature will then be there. Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive (unknown) Hello! I went into signatures. But bet it doesn't work here. I set mine up, but no where to set it here. No where to click to put sign. down. Lou IPF '02 (doesn't matter) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 n,also keep in mind , that if you wanted to participate in a clinical trialyou would most likely need a biopsy proven diagnoses Brett Bowser 40 MI.familial UIP/IPF 11/07 stage 4 lung cancer 7/08n,This is a bit of a ramble, so please forgive that in advance...I was diagnosed with IPF in early 2006. Based on everything I have learned, I would not spend my money on a lung biopsy if I was you, unless there is a specific reason that information would help.For example: A lung biopsy MIGHT enable the doctors to distinguish between two subtypes of PF: a type with more fibrosis called IPF or UIP (Usual Interstitial Pneumonitis), and a type with more inflammation and less fibrosis called NSIP (nonspecific interstitial pneumonitis). BUT, a) it is not guaranteed they will be able to give a 100% certain diagnosis between those, and would having that information help?NSIP is much more likely than IPF to respond to the "standard" combination therapy of Prednisone, Immuran, NAC and Bactrim. Some people have said that the best way to find out if a person has NSIP or IPF is to try the combination therapy. If the therapy works (and stops the progression of the disease) the person has NSIP. If it doesn't, the person has IPF.So it might be more direct just to try the combination therapy, without having the biopsy.On the other hand, prednisone and immuran can have severe side effects. For me, the prednisone caused fluid retention in my lungs (yuk).So if you don't want to try those drugs unless you have the best chance of them working, the biopsy could provide useful information. (Do you have pronounced clubbing of your fingernails? Lots of clubbing is more consistent with IPF and not NSIP: little or no clubbing is more consistent with NSIP).What I did was wait until my FVC and Diffusion rates fell below 50% predicted and then I tried the combination therapy. It didn't help me. The Prednisone caused fluid build-up in my lungs.Just to recap: even if a biopsy were to tell you that you have IPF and don't have NSIP, when your lungs get down to a certain point, you may want to try the combination therapy anyway, if it is the only hope. If so, would having the biopsy information have helped?I am doing as much pulmonary physiotherapy as I can, to keep my lungs as high functioning as possible, in the hope that Pirfenidone will pass its drug trials and be approved for use in early 2009.I am also tying to get Special Access Approval to use Pirfenidone before it is approved for general use.I want to avoid a lung transplant for as long as possible.Cameron> From: marionhgriffin <marionhgriffin>> Subject: (unknown)> To: Breathe-Support > Date: Wednesday, July 30, 2008, 1:52 AM> Hello All:> > If anyone remembers my brief appearance in this forum I> can't> imagine why you do, but you have a fantastic memory! > > I was diagnosed with IPF in April, 2006, and a few months> later > went off to teach English in S. Korea. I had almost two> wonder-> ful years there, before the IPF caught up with me and I> landed> in a Korean hospital...this was one of the more interesting> > experiences I had in Korea, and most of the two years was> inter-> esting! > > Fortunately, Korean doctors are well trained, and although> medical > services are delivered differently, they are on a par with> medical > care here, with the exception of cost. My 12 days in the> hospital,> including 2 in intensive care, cost the equivalent of $320> US and > my Korean health insurance paid another $650. My share> included > the 24hr a day services of a pbyongwon-a, or substitute> family > member, as I had no family in S.K...amazing how one can> communicate without speaking each other's language...> > Anyway, I'm back in the US with blood oxygen hovering> at 90-91> (and lower, of course, if I do something like walk across a> room...)> I do not have health insurance, and only a modest amount of> money,> most of which I need to live indoors and all that good> stuff. In the > US I have not seen a pulmonologist, and where I live in> N.C. no pulmon> ologist will see you without doing a lot of invasive (and> very > expensive)procedures. Several doctors in S. Korea, and one> US > internist told me that I would not benefit from these> procedures.> > Another friend, an RN, has told me that I MUST, MUST, MUST> have a> lung biopsy and a couple of other things, I'm an idiot> if I don't do > it even if I have to live in a tent yada, yada, yada.> However, she > got a little iffy on the answer to "How will this> benefit me?"> > Can anyone here suggest a concrete benefit to me of these> procedures? > The best I've gotten from a doctor was "Well, then> we'll know what's > going on in your lungs." When my follow-up question> was "Will it > change how you treat me?" the response was,> "well, maybe..." > spoken in tones that lead me to think the answer was really> "well, > no, not at all."> > The trade-off for me is that I might rapidly outlive my> money with > even a very short time horizon if I'm spending $$$$$ on> medical care. > Medicaid is not possible in N.C. and I don't want to> move to another > state where I know no one. S.S. Disability is problematical> because > 1) they told me I had to be diagnosed by a pulmonologist> (and have > all those tests) and 2) it would take two years to be> approved and I > can't receive Social Security Retirement while waiting.> (I'm 63)> > As of right now I'm not on any medication (I was given> steroids in> S.K., didn't respond) but about to start on oxygen as> needed. And one> more thing...I really have no interest in a lung> transplant.> > How do you all vote on lung biopsy, bronchoscopy and> whatall for some-> one in my financial position? And why?> > n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 Brett ... Odds have been broken before and if anyone can do it again I know you will! Your little family is so much motivation. I do pray for you Brett. I've known some who handle the chemo fairly well. I pray you will too. MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: (unknown) Hi peggy , good to hear from you as well my brother's are doing as well as can be expected no health issues so far aron gets checked out every three months and we are still trying to get cory in to get a physical everyone in my family now knows about my cancer but what I have not told them is the severity and prognosis both of the oncologists I saw said the chance of 1-year survival is at 20% and 2-years about 2% Im thinking Im going to beat all the odds just wait and see I start chemo next week fun , fun Brett Bowser 40 MI. familial UIP/IPF 11/07 stage 4 lung cancer 7/08 Hi Brett, It is good to see you posting. I am still amazed at all you have been through and are still facing. God knew what he was doing giving you such perfect Sunshine covered with honey. Still praying for you. How are your brothers doing ? <Sun Flower.gif> Love and Prayers, Peggy IPF 2004, Florida "Worry looks around, Sorry looks back, Faith looks up." Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.