Guest guest Posted November 21, 2009 Report Share Posted November 21, 2009 Hi Dawn, In short, Idiopathic (meaning no known cause) Pulmonary Fibrosis (IPF) takes a course that can’t be pre-determined. It could be slow growing or could be slow for a time and then a rapid decline. The scarring is irreversible, progressive and fatal. Most docs start IPF patients on a combination of medications, Prednisone, Azathioprine (Imuran), and Acetylcysteine (NAC); only about 20% of IPF patients respond to this treatment. The final treatment for IPF patients is a Lung Transplant. I was diagnosed with IPF in May 09, but because my younger brother died from IPF and my only living sister has Interstitial Lung Disease (ILD) with no visible scarring shown on her cat-scan and my mother was diagnosed and died in 1982 with emphysema which could very well have been undiagnosed IPF, they have changed my diagnosis to Familial IPF. Not that it makes a bit of difference for my treatment! C_53_Familial IPF_5/09Washington To: Breathe-Support Sent: Thu, November 12, 2009 2:17:59 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...
Guest guest Posted November 21, 2009 Report Share Posted November 21, 2009 Hi Dawn, In short, Idiopathic (meaning no known cause) Pulmonary Fibrosis (IPF) takes a course that can’t be pre-determined. It could be slow growing or could be slow for a time and then a rapid decline. The scarring is irreversible, progressive and fatal. Most docs start IPF patients on a combination of medications, Prednisone, Azathioprine (Imuran), and Acetylcysteine (NAC); but only about 20% of IPF patients respond to this treatment. The final treatment for IPF patients is a Lung Transplant. I was diagnosed with IPF in May 09, but because my younger brother died from IPF and my only living sister has Interstial Lung Disease (ILD) with no visible scarring shown on her cat-scan and my mother was diagnosed and died in 1982 with emphysema which could very well have been IPF, they have changed my diagnosis to Familial IPF. Not that it makes a bit of diff C_53_Familial IPF_5/09Washington To: Breathe-Support Sent: Thu, November 12, 2009 2:17:59 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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