Guest guest Posted July 2, 2002 Report Share Posted July 2, 2002 Good Morning Dawn, Did you start getting all the back e-mails today? I woke up to a bulging mailbox, stuffed with letters clear back to last Thursday. What fun! Are you doing o.k.? Hope everything is going well for you. Love, squeek --- dmorgan26347 wrote: > hi squeek > this darn yahoo, i only got 5 emails today and i > checked the site > and i know there is alot more than that. > i keep compaining to yahoo, maybe they will fix it. > > dawn > --- > > In Rpolychondritis@y..., " sisterslk " > <sisterslk@y...> wrote: > > Hi , > > > > Sorry your Sunday went so awry. That is not what > you need right > > now! Boy those stinkin' ex's can really be > annoying sometimes. > Our > > grandson, Jordan, lives here with his dad and us, > and Jordan's mom > > has caused some real messes in the past. No one > can understand why > > or how I put up with her, but I do it for Jordan's > sake! If I had > my > > way.......Hopefully things are looking up today! > > > > I'm doing well. Saw my doctor today and he is > impressed that I > made > > it down to 8 mg. of pred. I am going down to 7 on > Friday as that > is > > my next Remicade day. I asked about taking more > time between > > infusions, but he wants to see if I can get off > pred first. Darn! > > He had to put me on Nystatin for a little oral > thrush I've > > developed. Hopefully that will clear right up. > > > > Take care! Love, squeek > > > > > > P.S. Dawn, I'm still not getting most of my mail > either. One or > > two slips in, but the rest I have to go to the > site to read. > > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2009 Report Share Posted November 12, 2009 Your post came to the board just fine. At any time you may post to the board using this email address: Breathe-Support . You are correct, pulmonary fibrosis is referred to as IPF when the cause is unknown. There are something in the neighborhood of 200 different interstitial lung diseases that cause pulmonary fibrosis (lung scarring). Some have treatments that are effective and other types don't. If you have pf from radiation then the damage is done and cannot be undone. There may eventually be a way to undo scarring but that's not in sight at present. Pirfenidone is a medication that is as yet not approved by the FDA for treating pulmonary fibrosis. The clinical trials were limited to those with IPF and were inconclusive. However the manufacturer, Intermune, has applied to the FDA for approval which would allow Pirfenidone to be used to treat IPF. It is not however intended to undo scarring. At best it may slow the progression of the disease in some people. Assuming your disease is stable unlikely that it would be prescribed for you or do anything for you. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thu, November 12, 2009 5:17:59 PMSubject: Re: Re: Book I am so confused, sorry. Is this how I can answer/comment to the entire group or do I have to answer each person individually who responded to me? The posts are now in an "inbox" format but I was also looking at them through "my groups". Anyway, I hope this works. Since I am new to this whole thing I just asked Leanne to send me that informational packet. If I'm doing this wrong please someone let me know. Is there a "how to for dummies" for yahoo groups??? Cees, you have a terrific project to create and what an oppotunity to make a difference. I'm on board for writing a story and think the questionnaire is a great idea. I don't mind using my real name it's already out there for a lot of cancer & BMT sites. The more people we can reach out to the better, you will be a force to be reckoned with!!!! Thank you so much to the entire group for sharing and helping me see that I am not alone in this crazy thing. Your words of encouragement and life experience are truly priceless, thanks. Now for another question, IPF and PF. From what I understand IPF has an unknown cause and PF a known cause? Does that change medications that can be used to help? Like mine is from radiation treatments.. PF means scarring, how can anything undo that? What is Pirfenidone? I saw posts someplace but I can't find them now. Is that for both, IPF & PF? Thanks, Dawn From: Jack Marshall <mrshlljck (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 12, 2009 4:53:37 PMSubject: Re: Re: Book Oh MamaSher! Surely you know that to misspell is human. Jack79/IPF - UIP/dx06/05 Maine From: Sher Bauman <bofus6 (AT) verizon (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Wed, November 11, 2009 8:18:34 PMSubject: Re: Re: Book  boy oh boy, I sure misspelled fictitious! Sorry gang! MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Book Jack,I wholeheartedly agree with you about the heart-wrenching posts, "told from the heart," that would make this book a huge success among the general public. That's why I wrote that most members could just cut & paste previous posts to tell their stories because they were already so good. But Barbara & Beth make a really good point. Just because you & I have been writing on demand our whole lives doesn't mean the general public feels comfortable doing it. I think you said you taught college students like I did. Maybe your students were already good writing majors, but many of mine weren't, so I totally understand how people can be intimidated by a writing project. That's why I think a Questionnaire is a great idea. For one thing, we'll get responses from a lot more people, which I know you're hoping to see. And who knows? Sometimes just having a question to answer gets the juices flowing & stories come pouring out.So go for it, Barbara. I can't wait to see the Questionnaire. I think that's one thing that really can be posted on the Files section of our website, so everyone can download a copy. I would ask that you run it past a couple of us on the committee before you submit it though. Mostly because we might have an idea for another question to include & the read-only Files section can't easily be edited. For example, I think we should include a question asking permission to possibly use info from people's past postings with the caveat that they will have final approval over any edited version that's attributed to them. Whaddya ya'll think?Cees, S CalifPF 10/08> > > >> > > > Hi, I'm new here and need to hear from others who feel as old as I do.> > > I'm only 43 but my body is about 20 years older. I've battled Hodgkin's> > > Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on> > > oxygen 24/7, use a bi-pap and get out of breath with any movement. I am> > > in a rehab program 3x a week and was told I have a week diaphragm too> > > due to being laid up after some stomach surgery, so I am going to try> > > singing lessons to help me breath differently. I am so tired from> > > breathing, it takes so much energy. I am in a support group for the> > > cancer and in private therapy for everything else. But when does your> > > quality of life take priority over trying> > > > endlessly to beat all these> > > health issues? I have a king of a husband and a huge loving support> > > system but none of that can help me breath any better. Sorry for> > > complaining so soon, it's just so tough and I know someone out there has> > > walked in my shoes, I just need to know how do you keep on walking???> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
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