Guest guest Posted October 2, 2009 Report Share Posted October 2, 2009 been there, done that -- if it works, then it's wonderful when it worked, my pulmonary gradually weaned the prednisone dose down -- goal was 10 mgs didn't get there, when back up to 40 mgs, it worked again, so she put me on cellcept and then was able to gradually wean me back down to 10 mgs the weaning process can take several months -- it needs to be done very gradually i do know people with other diseases who need 20 mgs for maintenance --- for some, even 15 mgs is too low it all depends on your own body and what works best for you Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Another questionTo: Breathe-Support Date: Friday, October 2, 2009, 11:55 AM My pulmoDR has put me on 40mg of predisone a day...that's two 20's Do you think that's too much?? <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1..yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> To: "Breathe-Support@yahoogrou" <Breathe-Support >; Breathe-SupportCaregivers Sent: Thursday, October 1, 2009 9:51:39 PMSubject: Fw: Keep Momentum Growing for PF Bill - Call Congress Now -- Keep Momentum Growing for PF Bill - Call Congress Now Dear Joe: We are pleased to inform you the CPF's National Pulmonary Fibrosis Awareness Week was a huge success! More than 12 Members of Congress signed on to the Pulmonary Fibrosis Research Enhancement Act (H.R. 1079) during and after PF Week bringing the total number of co-sponsors to 52, as of today. And the momentum is growing! We need your help now to add even more members to the bill! We need 100 Members on the bill to help it reach the floor of Congress. Please call or email your Member of Congress now! Click here to send a note quickly and easily through our automated system:http://cpf.convio. net/site/ Advocacy? pagename= homepage & id=129 Your hard work has brought us great success - we urgently need for you to take action once again to get us closer to our goal! Passing a bill in Congress requires persistence and patience and we hope you will be with us for the long run. For today, we need for you to check to see if your Representative is a co-sponsor and either thank them, if so, or directly request that they co-sponsor H.R. 1079. If you've called them before and they are still not on the bill, please call again. Find out if your member is a co-sponsor by clicking this link: Co-sponsors of HR 1079, Sept. 29, 2009 update Success on Capitol Hill! CPF CEO Mishka Michon (center) stands between PF Champions, Rep. Mike Castle and Rep. Baird, surrounded by National PF Awareness Week Advocates During PF Week, determined advocates for action on PF, including patients and family members like you, held 60 meetings on Capitol Hill. For the second year, advocates focused on securing support for passage of H.R. 1079 and continuing to raise awareness of PF issues to Members of Congress and in communities nationwide. The majority of the Capitol Hill meetings took place with Members who serve on the Energy & Commerce committee and on the Energy & Commerce subcommittee on health. The Energy & Commerce committee is the committee of jurisdiction for the PFREA. The CPF and advocates also met with our champions, Congressman Baird (D-WA) and Congressman Mike Castle (R-DE) who introduced H.R. 1079. They stressed the bipartisan nature of the historic legislation that would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.. And they thanked you, our CPF membership, for driving the success of the bill! Both Congressmen have lost members of their families to PF. Please help us build on the momentum created by PF Week -- Call or email your Member of Congress now! http://cpf.convio. net/site/ Advocacy? pagename= homepage & id=129 Thank you for your important support of H.R. 1079! Sincerely, Mishka Michon, CPF CEO Coalition for Pulmonary FibrosisSuite F, #2271659 Branham LaneSan , CA 95118-5226info@coalitionforpf .org forward to a friend | unsubscribe | http://www.coalitio nforpf.org/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2009 Report Share Posted October 2, 2009 Thanks Joyce, appreciate the ans. I guess I need to buy the book "PF for dummies" <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> To: Breathe-Support Sent: Friday, October 2, 2009 1:53:45 PMSubject: Re: Another question been there, done that -- if it works, then it's wonderful when it worked, my pulmonary gradually weaned the prednisone dose down -- goal was 10 mgs didn't get there, when back up to 40 mgs, it worked again, so she put me on cellcept and then was able to gradually wean me back down to 10 mgs the weaning process can take several months -- it needs to be done very gradually i do know people with other diseases who need 20 mgs for maintenance --- for some, even 15 mgs is too low it all depends on your own body and what works best for you Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Another questionTo: Breathe-Support Date: Friday, October 2, 2009, 11:55 AM My pulmoDR has put me on 40mg of predisone a day...that's two 20's Do you think that's too much?? <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1..yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> To: "Breathe-Support@yahoogrou" <Breathe-Support >; Breathe-SupportCaregivers Sent: Thursday, October 1, 2009 9:51:39 PMSubject: Fw: Keep Momentum Growing for PF Bill - Call Congress Now -- Keep Momentum Growing for PF Bill - Call Congress Now Dear Joe: We are pleased to inform you the CPF's National Pulmonary Fibrosis Awareness Week was a huge success! More than 12 Members of Congress signed on to the Pulmonary Fibrosis Research Enhancement Act (H.R. 1079) during and after PF Week bringing the total number of co-sponsors to 52, as of today. And the momentum is growing! We need your help now to add even more members to the bill! We need 100 Members on the bill to help it reach the floor of Congress. Please call or email your Member of Congress now! Click here to send a note quickly and easily through our automated system:http://cpf.convio. net/site/ Advocacy? pagename= homepage & id=129 Your hard work has brought us great success - we urgently need for you to take action once again to get us closer to our goal! Passing a bill in Congress requires persistence and patience and we hope you will be with us for the long run. For today, we need for you to check to see if your Representative is a co-sponsor and either thank them, if so, or directly request that they co-sponsor H.R. 1079. If you've called them before and they are still not on the bill, please call again. Find out if your member is a co-sponsor by clicking this link: Co-sponsors of HR 1079, Sept. 29, 2009 update Success on Capitol Hill! CPF CEO Mishka Michon (center) stands between PF Champions, Rep. Mike Castle and Rep. Baird, surrounded by National PF Awareness Week Advocates During PF Week, determined advocates for action on PF, including patients and family members like you, held 60 meetings on Capitol Hill. For the second year, advocates focused on securing support for passage of H.R. 1079 and continuing to raise awareness of PF issues to Members of Congress and in communities nationwide. The majority of the Capitol Hill meetings took place with Members who serve on the Energy & Commerce committee and on the Energy & Commerce subcommittee on health. The Energy & Commerce committee is the committee of jurisdiction for the PFREA. The CPF and advocates also met with our champions, Congressman Baird (D-WA) and Congressman Mike Castle (R-DE) who introduced H.R. 1079. They stressed the bipartisan nature of the historic legislation that would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.. And they thanked you, our CPF membership, for driving the success of the bill! Both Congressmen have lost members of their families to PF.. Please help us build on the momentum created by PF Week -- Call or email your Member of Congress now! http://cpf.convio. net/site/ Advocacy? pagename= homepage & id=129 Thank you for your important support of H.R. 1079! Sincerely, Mishka Michon, CPF CEO Coalition for Pulmonary FibrosisSuite F, #2271659 Branham LaneSan , CA 95118-5226info@coalitionforpf .org forward to a friend | unsubscribe | http://cpf.convio.net/site/R?i=dt-iO3KxWm78Q-m4VLJPuw.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2009 Report Share Posted October 2, 2009 you're welcome there is enough info on this support group to write a couple of books if someone would put it together it would be great -- any authors out there??? Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Another questionTo: Breathe-Support Date: Friday, October 2, 2009, 3:05 PM Thanks Joyce, appreciate the ans. I guess I need to buy the book "PF for dummies" <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> To: Breathe-Support Sent: Friday, October 2, 2009 1:53:45 PMSubject: Re: Another question been there, done that -- if it works, then it's wonderful when it worked, my pulmonary gradually weaned the prednisone dose down -- goal was 10 mgs didn't get there, when back up to 40 mgs, it worked again, so she put me on cellcept and then was able to gradually wean me back down to 10 mgs the weaning process can take several months -- it needs to be done very gradually i do know people with other diseases who need 20 mgs for maintenance --- for some, even 15 mgs is too low it all depends on your own body and what works best for you Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Another questionTo: Breathe-Support Date: Friday, October 2, 2009, 11:55 AM My pulmoDR has put me on 40mg of predisone a day...that's two 20's Do you think that's too much?? <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1..yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> To: "Breathe-Support@yahoogrou" <Breathe-Support >; Breathe-SupportCaregivers Sent: Thursday, October 1, 2009 9:51:39 PMSubject: Fw: Keep Momentum Growing for PF Bill - Call Congress Now -- Keep Momentum Growing for PF Bill - Call Congress Now Dear Joe: We are pleased to inform you the CPF's National Pulmonary Fibrosis Awareness Week was a huge success! More than 12 Members of Congress signed on to the Pulmonary Fibrosis Research Enhancement Act (H.R. 1079) during and after PF Week bringing the total number of co-sponsors to 52, as of today. And the momentum is growing! We need your help now to add even more members to the bill! We need 100 Members on the bill to help it reach the floor of Congress. Please call or email your Member of Congress now! Click here to send a note quickly and easily through our automated system:http://cpf.convio. net/site/ Advocacy? pagename= homepage & id=129 Your hard work has brought us great success - we urgently need for you to take action once again to get us closer to our goal! Passing a bill in Congress requires persistence and patience and we hope you will be with us for the long run. For today, we need for you to check to see if your Representative is a co-sponsor and either thank them, if so, or directly request that they co-sponsor H.R. 1079. If you've called them before and they are still not on the bill, please call again. Find out if your member is a co-sponsor by clicking this link: Co-sponsors of HR 1079, Sept. 29, 2009 update Success on Capitol Hill! CPF CEO Mishka Michon (center) stands between PF Champions, Rep. Mike Castle and Rep. Baird, surrounded by National PF Awareness Week Advocates During PF Week, determined advocates for action on PF, including patients and family members like you, held 60 meetings on Capitol Hill. For the second year, advocates focused on securing support for passage of H.R. 1079 and continuing to raise awareness of PF issues to Members of Congress and in communities nationwide. The majority of the Capitol Hill meetings took place with Members who serve on the Energy & Commerce committee and on the Energy & Commerce subcommittee on health. The Energy & Commerce committee is the committee of jurisdiction for the PFREA. The CPF and advocates also met with our champions, Congressman Baird (D-WA) and Congressman Mike Castle (R-DE) who introduced H.R. 1079. They stressed the bipartisan nature of the historic legislation that would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.. And they thanked you, our CPF membership, for driving the success of the bill! Both Congressmen have lost members of their families to PF.. Please help us build on the momentum created by PF Week -- Call or email your Member of Congress now! http://cpf.convio. net/site/ Advocacy? pagename= homepage & id=129 Thank you for your important support of H.R. 1079! Sincerely, Mishka Michon, CPF CEO Coalition for Pulmonary FibrosisSuite F, #2271659 Branham LaneSan , CA 95118-5226info@coalitionforpf .org forward to a friend | unsubscribe | http://cpf.convio.net/site/R?i=dt-iO3KxWm78Q-m4VLJPuw.. 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Guest guest Posted October 2, 2009 Report Share Posted October 2, 2009 , There isn't really an answer to that question. What is too much? Obviously your doctor is trying to accomplish something with the 40mg and when he's done that or concluded he can't accomplish it he will likely begin weaning you down to lower doses or maybe off completely. At one time I was on 100mg of prednisone a day. It was necessary at the time but then I was weaned (slowly slowly) off and have been able to stay off prednisone now for over two and a half years. If I had to take it again, I would because I know my disease is likely to respond to it. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Fri, October 2, 2009 11:55:23 AMSubject: Another question My pulmoDR has put me on 40mg of predisone a day...that's two 20's Do you think that's too much?? <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1..yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> To: "Breathe-Support@yahoogrou" <Breathe-Support >; Breathe-SupportCaregivers Sent: Thursday, October 1, 2009 9:51:39 PMSubject: Fw: Keep Momentum Growing for PF Bill - Call Congress Now -- Keep Momentum Growing for PF Bill - Call Congress Now Dear Joe: We are pleased to inform you the CPF's National Pulmonary Fibrosis Awareness Week was a huge success! More than 12 Members of Congress signed on to the Pulmonary Fibrosis Research Enhancement Act (H.R. 1079) during and after PF Week bringing the total number of co-sponsors to 52, as of today. And the momentum is growing! We need your help now to add even more members to the bill! We need 100 Members on the bill to help it reach the floor of Congress. Please call or email your Member of Congress now! Click here to send a note quickly and easily through our automated system:http://cpf.convio. net/site/ Advocacy? pagename= homepage & id=129 Your hard work has brought us great success - we urgently need for you to take action once again to get us closer to our goal! Passing a bill in Congress requires persistence and patience and we hope you will be with us for the long run. For today, we need for you to check to see if your Representative is a co-sponsor and either thank them, if so, or directly request that they co-sponsor H.R. 1079. If you've called them before and they are still not on the bill, please call again. Find out if your member is a co-sponsor by clicking this link: Co-sponsors of HR 1079, Sept. 29, 2009 update Success on Capitol Hill! CPF CEO Mishka Michon (center) stands between PF Champions, Rep. Mike Castle and Rep. Baird, surrounded by National PF Awareness Week Advocates During PF Week, determined advocates for action on PF, including patients and family members like you, held 60 meetings on Capitol Hill. For the second year, advocates focused on securing support for passage of H.R. 1079 and continuing to raise awareness of PF issues to Members of Congress and in communities nationwide. The majority of the Capitol Hill meetings took place with Members who serve on the Energy & Commerce committee and on the Energy & Commerce subcommittee on health. The Energy & Commerce committee is the committee of jurisdiction for the PFREA. The CPF and advocates also met with our champions, Congressman Baird (D-WA) and Congressman Mike Castle (R-DE) who introduced H.R. 1079. They stressed the bipartisan nature of the historic legislation that would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.. And they thanked you, our CPF membership, for driving the success of the bill! Both Congressmen have lost members of their families to PF. Please help us build on the momentum created by PF Week -- Call or email your Member of Congress now! http://cpf.convio. net/site/ Advocacy? pagename= homepage & id=129 Thank you for your important support of H.R. 1079! Sincerely, Mishka Michon, CPF CEO Coalition for Pulmonary FibrosisSuite F, #2271659 Branham LaneSan , CA 95118-5226info@coalitionforpf .org forward to a friend | unsubscribe | http://cpf.convio.net/site/R?i=dt-iO3KxWm78Q-m4VLJPuw.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 Joyce, that is a great idea! A book by us about us would not only be good for ourselves and others with our disease, but it would also educate the general public and perhaps boost spending for research. I would attempt it if I had the time, but I am one of the least informed on the subject. That sounds odd, but my life stays realtively normal and I have infrequent awareness of having IPF. I am aware that may change at any moment. Within our group, I think it would take people like Bruce and Beth who have the medical knowledge, and the personal experiences of those who have have had the disease for several years and experienced a fair amount of loss of mobility. Perhaps the way to such a book is to form a group to work collectively. As an author, I would be willing to work on it as an editor. MamaSher is also an author and there may be more on the board. We have enough people here who can write their personal experiences to fill several books. Jack79/IPF - UIP/dx06/05 Maine To: Breathe-Support Sent: Fri, October 2, 2009 6:02:34 PMSubject: Re: Another question you're welcome there is enough info on this support group to write a couple of books if someone would put it together it would be great -- any authors out there??? Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Another questionTo: Breathe-Support Date: Friday, October 2, 2009, 3:05 PM Thanks Joyce, appreciate the ans. I guess I need to buy the book "PF for dummies" <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> To: Breathe-Support Sent: Friday, October 2, 2009 1:53:45 PMSubject: Re: Another question been there, done that -- if it works, then it's wonderful when it worked, my pulmonary gradually weaned the prednisone dose down -- goal was 10 mgs didn't get there, when back up to 40 mgs, it worked again, so she put me on cellcept and then was able to gradually wean me back down to 10 mgs the weaning process can take several months -- it needs to be done very gradually i do know people with other diseases who need 20 mgs for maintenance --- for some, even 15 mgs is too low it all depends on your own body and what works best for you Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Another questionTo: Breathe-Support Date: Friday, October 2, 2009, 11:55 AM My pulmoDR has put me on 40mg of predisone a day...that's two 20's Do you think that's too much?? <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1..yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> To: "Breathe-Support@yahoogrou" <Breathe-Support >; Breathe-SupportCaregivers Sent: Thursday, October 1, 2009 9:51:39 PMSubject: Fw: Keep Momentum Growing for PF Bill - Call Congress Now -- Keep Momentum Growing for PF Bill - Call Congress Now Dear Joe: We are pleased to inform you the CPF's National Pulmonary Fibrosis Awareness Week was a huge success! More than 12 Members of Congress signed on to the Pulmonary Fibrosis Research Enhancement Act (H.R. 1079) during and after PF Week bringing the total number of co-sponsors to 52, as of today. And the momentum is growing! We need your help now to add even more members to the bill! We need 100 Members on the bill to help it reach the floor of Congress. Please call or email your Member of Congress now! Click here to send a note quickly and easily through our automated system:http://cpf.convio. net/site/ Advocacy? pagename= homepage & id=129 Your hard work has brought us great success - we urgently need for you to take action once again to get us closer to our goal! Passing a bill in Congress requires persistence and patience and we hope you will be with us for the long run.. For today, we need for you to check to see if your Representative is a co-sponsor and either thank them, if so, or directly request that they co-sponsor H.R. 1079. If you've called them before and they are still not on the bill, please call again. Find out if your member is a co-sponsor by clicking this link: Co-sponsors of HR 1079, Sept. 29, 2009 update Success on Capitol Hill! CPF CEO Mishka Michon (center) stands between PF Champions, Rep. Mike Castle and Rep. Baird, surrounded by National PF Awareness Week Advocates During PF Week, determined advocates for action on PF, including patients and family members like you, held 60 meetings on Capitol Hill. For the second year, advocates focused on securing support for passage of H.R. 1079 and continuing to raise awareness of PF issues to Members of Congress and in communities nationwide. The majority of the Capitol Hill meetings took place with Members who serve on the Energy & Commerce committee and on the Energy & Commerce subcommittee on health. The Energy & Commerce committee is the committee of jurisdiction for the PFREA. The CPF and advocates also met with our champions, Congressman Baird (D-WA) and Congressman Mike Castle (R-DE) who introduced H.R. 1079. They stressed the bipartisan nature of the historic legislation that would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.. And they thanked you, our CPF membership, for driving the success of the bill! Both Congressmen have lost members of their families to PF.. Please help us build on the momentum created by PF Week -- Call or email your Member of Congress now! http://cpf.convio. net/site/ Advocacy? pagename= homepage & id=129 Thank you for your important support of H.R. 1079! Sincerely, Mishka Michon, CPF CEO Coalition for Pulmonary FibrosisSuite F, #2271659 Branham LaneSan , CA 95118-5226info@coalitionforpf .org forward to a friend | unsubscribe | http://cpf.convio..net/site/R?i=dt-iO3KxWm78Q-m4VLJPuw.. 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Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 Hi ,My doc started me on 40mg of Prednisone too. I'm now at a maintenance of 20mg. He wants to try to get me down to a lower dose eventually. Prednisone helps to reduce the inflammation in our lungs. So I think they start you out a high dose to attack that inflammation. But, because the side effects of Prednisone can be detrimental to our health in other areas, they slowly start to reduce that dosage to a maintenance level that will still continue to reduce or eliminate the inflammation. C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Fri, October 2, 2009 8:55:23 AMSubject: Another question My pulmoDR has put me on 40mg of predisone a day...that's two 20's Do you think that's too much?? Soulliere http://us.i1..yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> To: "Breathe-Support@yahoogrou" <Breathe-Support >; Breathe-SupportCaregivers Sent: Thursday, October 1, 2009 9:51:39 PMSubject: Fw: Keep Momentum Growing for PF Bill - Call Congress Now -- Keep Momentum Growing for PF Bill - Call Congress Now Dear Joe: We are pleased to inform you the CPF's National Pulmonary Fibrosis Awareness Week was a huge success! More than 12 Members of Congress signed on to the Pulmonary Fibrosis Research Enhancement Act (H.R. 1079) during and after PF Week bringing the total number of co-sponsors to 52, as of today. And the momentum is growing! We need your help now to add even more members to the bill! We need 100 Members on the bill to help it reach the floor of Congress. Please call or email your Member of Congress now! Click here to send a note quickly and easily through our automated system:http://cpf.convio. net/site/ Advocacy? pagename= homepage & id=129 Your hard work has brought us great success - we urgently need for you to take action once again to get us closer to our goal! Passing a bill in Congress requires persistence and patience and we hope you will be with us for the long run. For today, we need for you to check to see if your Representative is a co-sponsor and either thank them, if so, or directly request that they co-sponsor H.R. 1079. If you've called them before and they are still not on the bill, please call again. Find out if your member is a co-sponsor by clicking this link: Co-sponsors of HR 1079, Sept. 29, 2009 update Success on Capitol Hill! CPF CEO Mishka Michon (center) stands between PF Champions, Rep. Mike Castle and Rep. Baird, surrounded by National PF Awareness Week Advocates During PF Week, determined advocates for action on PF, including patients and family members like you, held 60 meetings on Capitol Hill. For the second year, advocates focused on securing support for passage of H.R. 1079 and continuing to raise awareness of PF issues to Members of Congress and in communities nationwide. The majority of the Capitol Hill meetings took place with Members who serve on the Energy & Commerce committee and on the Energy & Commerce subcommittee on health. The Energy & Commerce committee is the committee of jurisdiction for the PFREA. The CPF and advocates also met with our champions, Congressman Baird (D-WA) and Congressman Mike Castle (R-DE) who introduced H.R. 1079. They stressed the bipartisan nature of the historic legislation that would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.. And they thanked you, our CPF membership, for driving the success of the bill! Both Congressmen have lost members of their families to PF. Please help us build on the momentum created by PF Week -- Call or email your Member of Congress now! http://cpf.convio. net/site/ Advocacy? pagename= homepage & id=129 Thank you for your important support of H.R. 1079! Sincerely, Mishka Michon, CPF CEO Coalition for Pulmonary FibrosisSuite F, #2271659 Branham LaneSan , CA 95118-5226info@coalitionforpf .org forward to a friend | unsubscribe | http://cpf.convio.net/site/R?i=dt-iO3KxWm78Q-m4VLJPuw.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 Hi everyone, I just joined your group and hadn't planned to speak up anytime soon but found myself intrigued by your book idea. I've been a professional writer & editor most of my life and have taught college writing classes for the last 10 years. BUT -- like Jack -- except for being placed on disability because of PF/ILD, my life also remains relatively normal so far. The only real information I know is what I've researched myself, & I'm extremely frustrated by it. I don't even understand much of what you talk about on this group site. Even the American Lung Association concentrates mostly on COPD and has very little info about restrictive diseases. The Mayo Clinic, Jewish Center, specializing universities, etc. have more, but it's all helter-skelter & listed under different keywords. I hang on to the little bits of info that those of you who have actually been to these doctors mention on this site. I'm stuck with a pulmonologist from Kaiser-Permanente HMO who has only seen me 3 times in the year since I was diagnosed. I like him, but I have only 15-20 mins. each time to cram all my questions into. I don't even know whether to tell people I have PF or ILD, but it really doesn't matter because nobody has heard of either of them. Can you tell how frustrated I am? As Jack said so eloquently, " a book by us about us would not only be good for ourselves and others with our disease, but it would also educate the general public and perhaps boost spending for research. " If I can do anything to help, please count me in. But I'd be better as an editor also since the only thing I could write about so far is my frustration (which I think is probably worthwhile to add but shouldn't be more than a page or 2). Thanks for letting me vent though. I really do think a book is a wonderful idea. When I sent the form email on HR 1079 to my Representative, I was surprised to learn that just as many people die annually from PF as breast cancer, and look how many books are out there on that topic. What the heck are we waiting for? I'm not quite sure how to sign off using your method because I don't understand some of the things you include, but I'll give it a try. Cees, 59 (for 2 more days!) S. Calif. PF/ILD 10/08 > > > > > >> > >>Subject: Another question > >>To: Breathe-Support > >>Date: Friday, October 2, 2009, 11:55 AM > >> > >> > >>My pulmoDR has put me on 40mg of predisone a day...that's two 20's > >>Do you think that's too much?? > >> > >> > >> > >> > >> > >><FONT face= " comic sans ms " color=#40007f size=3> Soulliere & nbsp; <IMG src= " http://us.i1..yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif " ></FONT> > >> > >> > >> > >> > >> > ________________________________ > > >>To: " Breathe-Support@yahoogrou " <Breathe-Support >; Breathe-SupportCaregivers > >>Sent: Thursday, October 1, 2009 9:51:39 PM > >>Subject: Fw: Keep Momentum Growing for PF Bill - Call Congress Now > >> > >> > >> > >> > >> > >>-- Keep Momentum Growing for PF Bill - Call Congress Now > >> > >> > >> > >> > >>Dear Joe: > >> > >>We are pleased to inform you the CPF's National Pulmonary Fibrosis Awareness Week was ahuge success! More than 12 Members of Congress signed on to the Pulmonary Fibrosis Research Enhancement Act (H.R. 1079) during and after PF Week bringing the total number of co-sponsors to 52, as of today. And the momentum is growing! We need your help now to add even more members to the bill! We need 100 Members on the bill to help it reach the floor of Congress. Please call or email your Member of Congress now! Click here to send a note quickly and easily through our automated system:http://cpf.convio. net/site/ Advocacy? pagename= homepage & id=129 > >>Your hard work has brought us great success - we urgently need for you to take action once again to get us closer to our goal! Passing a bill in Congress requires persistence and patience and we hope you will be with us for the long run. For today, we need for you to check to see if your Representative is a co-sponsor and either thank them, if so, or directly request that they co-sponsor H.R. 1079. If you've called them before and they are still not on the bill, please call again. Find out if your member is a co-sponsor by clicking this link: Co-sponsors of HR 1079, Sept. 29, 2009 update > >>Success on Capitol Hill! > >>CPF CEO Mishka Michon (center) stands between PF Champions, Rep. Mike Castle and Rep. Baird, surrounded by National PF Awareness Week Advocates > >>During PF Week, determined advocates for action on PF, including patients and family members like you, held 60 meetings on Capitol Hill.. For the second year, advocates focused on securing support for passage of H.R. 1079 and continuing to raise awareness of PF issues to Members of Congress and in communities nationwide. The majority of the Capitol Hill meetings took place with Members who serve on the Energy & Commerce committee and on the Energy & Commerce subcommittee on health. The Energy & Commerce committee is the committee of jurisdiction for the PFREA. > >>The CPF and advocates also met with our champions, Congressman Baird (D-WA) and Congressman Mike Castle (R-DE) who introduced H.R. 1079. They stressed the bipartisan nature of the historic legislation that would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.. And they thanked you, our CPF membership, for driving the success of the bill! Both Congressmen have lost members of their families to PF.. > >>Please help us build on the momentum created by PF Week -- Call or email your Member of Congress now! http://cpf.convio. net/site/ Advocacy? pagename= homepage & id=129 > >>Thank you for your important support of H.R. 1079! > >>Sincerely, > >>Mishka Michon, CPF CEO > >> > >> > >> Coalition for Pulmonary Fibrosis > >>Suite F, #227 > >>1659 Branham Lane > >>San , CA 95118-5226 > >> > >>info@coalitionforpf .org > >> > >> > >>forward to a friend | unsubscribe | http://cpf.convio.net/site/R?i=dt-iO3KxWm78Q-m4VLJPuw.. > >> > >> > >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 Cees, Hello, My name is Miranda. I see you are in Southern Cali. Where about do you live ? I am in Duarte, CA. That is near Pasadena. I am currently on the List at USC University Hospital. Miranda LA / 28yrs old IPF 05 > > > > > > > > >>From: Soulliere <johnsbatik@> > > >>Subject: Another question > > >>To: Breathe-Support > > >>Date: Friday, October 2, 2009, 11:55 AM > > >> > > >> > > >>My pulmoDR has put me on 40mg of predisone a day...that's two 20's > > >>Do you think that's too much?? > > >> > > >> > > >> > > >> > > >> > > >><FONT face= " comic sans ms " color=#40007f size=3> Soulliere & nbsp; <IMG src= " http://us.i1..yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif " ></FONT> > > >> > > >> > > >> > > >> > > >> > > ________________________________ > > From: JOE & JOANIE LAMENSKIE <jjskie@> > > >>To: " Breathe-Support@yahoogrou " <Breathe-Support >; Breathe-SupportCaregivers > > >>Sent: Thursday, October 1, 2009 9:51:39 PM > > >>Subject: Fw: Keep Momentum Growing for PF Bill - Call Congress Now > > >> > > >> > > >> > > >> > > >> > > >>-- Keep Momentum Growing for PF Bill - Call Congress Now > > >> > > >> > > >> > > >> > > >>Dear Joe: > > >> > > >>We are pleased to inform you the CPF's National Pulmonary Fibrosis Awareness Week was ahuge success! More than 12 Members of Congress signed on to the Pulmonary Fibrosis Research Enhancement Act (H.R. 1079) during and after PF Week bringing the total number of co-sponsors to 52, as of today. And the momentum is growing! We need your help now to add even more members to the bill! We need 100 Members on the bill to help it reach the floor of Congress. Please call or email your Member of Congress now! Click here to send a note quickly and easily through our automated system:http://cpf.convio. net/site/ Advocacy? pagename= homepage & id=129 > > >>Your hard work has brought us great success - we urgently need for you to take action once again to get us closer to our goal! Passing a bill in Congress requires persistence and patience and we hope you will be with us for the long run. For today, we need for you to check to see if your Representative is a co-sponsor and either thank them, if so, or directly request that they co-sponsor H.R. 1079. If you've called them before and they are still not on the bill, please call again. Find out if your member is a co-sponsor by clicking this link: Co-sponsors of HR 1079, Sept. 29, 2009 update > > >>Success on Capitol Hill! > > >>CPF CEO Mishka Michon (center) stands between PF Champions, Rep. Mike Castle and Rep. Baird, surrounded by National PF Awareness Week Advocates > > >>During PF Week, determined advocates for action on PF, including patients and family members like you, held 60 meetings on Capitol Hill.. For the second year, advocates focused on securing support for passage of H.R. 1079 and continuing to raise awareness of PF issues to Members of Congress and in communities nationwide. The majority of the Capitol Hill meetings took place with Members who serve on the Energy & Commerce committee and on the Energy & Commerce subcommittee on health. The Energy & Commerce committee is the committee of jurisdiction for the PFREA. > > >>The CPF and advocates also met with our champions, Congressman Baird (D-WA) and Congressman Mike Castle (R-DE) who introduced H.R. 1079. They stressed the bipartisan nature of the historic legislation that would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.. And they thanked you, our CPF membership, for driving the success of the bill! Both Congressmen have lost members of their families to PF.. > > >>Please help us build on the momentum created by PF Week -- Call or email your Member of Congress now! http://cpf.convio. net/site/ Advocacy? pagename= homepage & id=129 > > >>Thank you for your important support of H.R. 1079! > > >>Sincerely, > > >>Mishka Michon, CPF CEO > > >> > > >> > > >> Coalition for Pulmonary Fibrosis > > >>Suite F, #227 > > >>1659 Branham Lane > > >>San , CA 95118-5226 > > >> > > >>info@coalitionforpf .org > > >> > > >> > > >>forward to a friend | unsubscribe | http://cpf.convio.net/site/R?i=dt-iO3KxWm78Q-m4VLJPuw.. > > >> > > >> > > >> > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 Bruce, anne, Cees and others in the group, My name is Bob and I have been a member since Jan but have only posted a couple of times. A book to bring attention to this decease is a good idea but, to Cees point about the American Lung Association. The American LUNG Association. I get solicitation for contributions all the time in the mail, but PF is never mentioned. Most of us in the group never heard of this killer until we were diagnosed and told we'd die in 2 to 4 years! We all have heard of lung cancer...... and even COPD. I think we've heard of COPD mainly because the Pharmaceutical Co's are making a lot of money off the inhalers. I am reading about the Blue Shirt Friday by the members on this board but, unless its a national movement I don't think it will go much farther than this group, relatives and friends, not much more than a high school or company program. Blue shirts will make us feel good because at least we are doing something, but I think we need more than that. I'm new to all of this, and I probably am behind in efforts, but I don't understand why this is not a priority for the American LUNG Association. Sorry for the rant, but, Could anyone tell me a little more about all this? - Subject: Re: Another questionTo: Breathe-Support Date: Saturday, October 3, 2009, 6:55 PM Hi everyone,I just joined your group and hadn't planned to speak up anytime soon but found myself intrigued by your book idea. I've been a professional writer & editor most of my life and have taught college writing classes for the last 10 years. BUT -- like Jack -- except for being placed on disability because of PF/ILD, my life also remains relatively normal so far. The only real information I know is what I've researched myself, & I'm extremely frustrated by it. I don't even understand much of what you talk about on this group site.Even the American Lung Association concentrates mostly on COPD and has very little info about restrictive diseases. The Mayo Clinic, Jewish Center, specializing universities, etc. have more, but it's all helter-skelter & listed under different keywords. I hang on to the little bits of info that those of you who have actually been to these doctors mention on this site. I'm stuck with a pulmonologist from Kaiser-Permanente HMO who has only seen me 3 times in the year since I was diagnosed. I like him, but I have only 15-20 mins. each time to cram all my questions into.I don't even know whether to tell people I have PF or ILD, but it really doesn't matter because nobody has heard of either of them. Can you tell how frustrated I am?As Jack said so eloquently, "a book by us about us would not only be good for ourselves and others with our disease, but it would also educate the general public and perhaps boost spending for research."If I can do anything to help, please count me in. But I'd be better as an editor also since the only thing I could write about so far is my frustration (which I think is probably worthwhile to add but shouldn't be more than a page or 2).Thanks for letting me vent though. I really do think a book is a wonderful idea. When I sent the form email on HR 1079 to my Representative, I was surprised to learn that just as many people die annually from PF as breast cancer, and look how many books are out there on that topic. What the heck are we waiting for?I'm not quite sure how to sign off using your method because I don't understand some of the things you include, but I'll give it a try.Cees, 59 (for 2 more days!)S. Calif.PF/ILD 10/08> >> >> >>From: Soulliere <johnsbatik@ ...>> >>Subject: Another question> >>To: Breathe-Support@ yahoogroups. com> >>Date: Friday, October 2, 2009, 11:55 AM> >>> >>> >>My pulmoDR has put me on 40mg of predisone a day...that's two 20's> >>Do you think that's too much??> >> > >>> >>> >>> >>> >><FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1. .yimg.com/ us.yimg.com/ i/mesg/tsmileys2 /50.gif"></FONT>> >>> >>> >>> >>> >>> ____________ _________ _________ __> > >>To: "Breathe-Support@ yahoogrou" <Breathe-Support@ yahoogroups. com>; Breathe-SupportCare givers@yahoogrou ps.com> >>Sent: Thursday, October 1, 2009 9:51:39 PM> >>Subject: Fw: Keep Momentum Growing for PF Bill - Call Congress Now> >>> >> > >>> >>> >>> >>-- Keep Momentum Growing for PF Bill - Call Congress Now> >>> >> > >> > >>> >>Dear Joe: > >> > >>We are pleased to inform you the CPF's National Pulmonary Fibrosis Awareness Week was ahuge success! More than 12 Members of Congress signed on to the Pulmonary Fibrosis Research Enhancement Act (H.R. 1079) during and after PF Week bringing the total number of co-sponsors to 52, as of today. And the momentum is growing! We need your help now to add even more members to the bill! We need 100 Members on the bill to help it reach the floor of Congress. Please call or email your Member of Congress now! Click here to send a note quickly and easily through our automated system:http://cpf.convio. net/site/ Advocacy? pagename= homepage & id= 129 > >>Your hard work has brought us great success - we urgently need for you to take action once again to get us closer to our goal! Passing a bill in Congress requires persistence and patience and we hope you will be with us for the long run. For today, we need for you to check to see if your Representative is a co-sponsor and either thank them, if so, or directly request that they co-sponsor H.R. 1079. If you've called them before and they are still not on the bill, please call again. Find out if your member is a co-sponsor by clicking this link: Co-sponsors of HR 1079, Sept. 29, 2009 update> >>Success on Capitol Hill! > >>CPF CEO Mishka Michon (center) stands between PF Champions, Rep. Mike Castle and Rep. Baird, surrounded by National PF Awareness Week Advocates > >>During PF Week, determined advocates for action on PF, including patients and family members like you, held 60 meetings on Capitol Hill.. For the second year, advocates focused on securing support for passage of H.R. 1079 and continuing to raise awareness of PF issues to Members of Congress and in communities nationwide. The majority of the Capitol Hill meetings took place with Members who serve on the Energy & Commerce committee and on the Energy & Commerce subcommittee on health. The Energy & Commerce committee is the committee of jurisdiction for the PFREA. > >>The CPF and advocates also met with our champions, Congressman Baird (D-WA) and Congressman Mike Castle (R-DE) who introduced H.R. 1079. They stressed the bipartisan nature of the historic legislation that would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.. And they thanked you, our CPF membership, for driving the success of the bill! Both Congressmen have lost members of their families to PF..> >>Please help us build on the momentum created by PF Week -- Call or email your Member of Congress now! http://cpf.convio. net/site/ Advocacy? pagename= homepage & id= 129 > >>Thank you for your important support of H.R. 1079!> >>Sincerely, > >>Mishka Michon, CPF CEO> >> > >> > >> Coalition for Pulmonary Fibrosis> >>Suite F, #227> >>1659 Branham Lane> >>San , CA 95118-5226> >>> >>info@coalitionfor pf .org > >>> >>> >>forward to a friend | unsubscribe | http://cpf.convio. net/site/ R?i=dt-iO3KxWm78 Q-m4VLJPuw. . > >> > >> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 welcome Cees your signature is correct name, location, disease, date of dx IFA is idiopathic fibrosing alveolitis -- name of disease was changed because my disease is responding to medications and IPF does not respond i was on the active transplant list for a couple of months, since the disease is responsive to the meds, i am inactive re: the list if there is a change i can go right back on i too was very disappointed re: the american lung association and pulmonary fibrosis yes, it is frustrating that some diseases get so much attention, while pulmonary fibrosis doesn't there is an alphabet soup re: pf, someone will post it i gathered a list of helpful hints for living with ipf and posted them once ild or interstitial lung disease is like the "umbrella" with lots of diseases under it Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Another questionTo: Breathe-Support Date: Saturday, October 3, 2009, 6:55 PM Hi everyone,I just joined your group and hadn't planned to speak up anytime soon but found myself intrigued by your book idea. I've been a professional writer & editor most of my life and have taught college writing classes for the last 10 years. BUT -- like Jack -- except for being placed on disability because of PF/ILD, my life also remains relatively normal so far. The only real information I know is what I've researched myself, & I'm extremely frustrated by it. I don't even understand much of what you talk about on this group site.Even the American Lung Association concentrates mostly on COPD and has very little info about restrictive diseases. The Mayo Clinic, Jewish Center, specializing universities, etc. have more, but it's all helter-skelter & listed under different keywords. I hang on to the little bits of info that those of you who have actually been to these doctors mention on this site. I'm stuck with a pulmonologist from Kaiser-Permanente HMO who has only seen me 3 times in the year since I was diagnosed. I like him, but I have only 15-20 mins. each time to cram all my questions into.I don't even know whether to tell people I have PF or ILD, but it really doesn't matter because nobody has heard of either of them. Can you tell how frustrated I am?As Jack said so eloquently, "a book by us about us would not only be good for ourselves and others with our disease, but it would also educate the general public and perhaps boost spending for research."If I can do anything to help, please count me in. But I'd be better as an editor also since the only thing I could write about so far is my frustration (which I think is probably worthwhile to add but shouldn't be more than a page or 2).Thanks for letting me vent though. I really do think a book is a wonderful idea. When I sent the form email on HR 1079 to my Representative, I was surprised to learn that just as many people die annually from PF as breast cancer, and look how many books are out there on that topic. What the heck are we waiting for?I'm not quite sure how to sign off using your method because I don't understand some of the things you include, but I'll give it a try.Cees, 59 (for 2 more days!)S. Calif.PF/ILD 10/08> >> >> >>From: Soulliere <johnsbatik@ ...>> >>Subject: Another question> >>To: Breathe-Support@ yahoogroups. com> >>Date: Friday, October 2, 2009, 11:55 AM> >>> >>> >>My pulmoDR has put me on 40mg of predisone a day...that's two 20's> >>Do you think that's too much??> >> > >>> >>> >>> >>> >><FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1. .yimg.com/ us.yimg.com/ i/mesg/tsmileys2 /50.gif"></FONT>> >>> >>> >>> >>> >>> ____________ _________ _________ __> > >>To: "Breathe-Support@ yahoogrou" <Breathe-Support@ yahoogroups. com>; Breathe-SupportCare givers@yahoogrou ps.com> >>Sent: Thursday, October 1, 2009 9:51:39 PM> >>Subject: Fw: Keep Momentum Growing for PF Bill - Call Congress Now> >>> >> > >>> >>> >>> >>-- Keep Momentum Growing for PF Bill - Call Congress Now> >>> >> > >> > >>> >>Dear Joe: > >> > >>We are pleased to inform you the CPF's National Pulmonary Fibrosis Awareness Week was ahuge success! More than 12 Members of Congress signed on to the Pulmonary Fibrosis Research Enhancement Act (H.R. 1079) during and after PF Week bringing the total number of co-sponsors to 52, as of today. And the momentum is growing! We need your help now to add even more members to the bill! We need 100 Members on the bill to help it reach the floor of Congress. Please call or email your Member of Congress now! Click here to send a note quickly and easily through our automated system:http://cpf.convio. net/site/ Advocacy? pagename= homepage & id= 129 > >>Your hard work has brought us great success - we urgently need for you to take action once again to get us closer to our goal! Passing a bill in Congress requires persistence and patience and we hope you will be with us for the long run. For today, we need for you to check to see if your Representative is a co-sponsor and either thank them, if so, or directly request that they co-sponsor H.R. 1079. If you've called them before and they are still not on the bill, please call again. Find out if your member is a co-sponsor by clicking this link: Co-sponsors of HR 1079, Sept. 29, 2009 update> >>Success on Capitol Hill! > >>CPF CEO Mishka Michon (center) stands between PF Champions, Rep. Mike Castle and Rep. Baird, surrounded by National PF Awareness Week Advocates > >>During PF Week, determined advocates for action on PF, including patients and family members like you, held 60 meetings on Capitol Hill.. For the second year, advocates focused on securing support for passage of H.R. 1079 and continuing to raise awareness of PF issues to Members of Congress and in communities nationwide. The majority of the Capitol Hill meetings took place with Members who serve on the Energy & Commerce committee and on the Energy & Commerce subcommittee on health. The Energy & Commerce committee is the committee of jurisdiction for the PFREA. > >>The CPF and advocates also met with our champions, Congressman Baird (D-WA) and Congressman Mike Castle (R-DE) who introduced H.R. 1079. They stressed the bipartisan nature of the historic legislation that would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.. And they thanked you, our CPF membership, for driving the success of the bill! Both Congressmen have lost members of their families to PF..> >>Please help us build on the momentum created by PF Week -- Call or email your Member of Congress now! http://cpf.convio. net/site/ Advocacy? pagename= homepage & id= 129 > >>Thank you for your important support of H.R. 1079!> >>Sincerely, > >>Mishka Michon, CPF CEO> >> > >> > >> Coalition for Pulmonary Fibrosis> >>Suite F, #227> >>1659 Branham Lane> >>San , CA 95118-5226> >>> >>info@coalitionfor pf .org > >>> >>> >>forward to a friend | unsubscribe | http://cpf.convio. net/site/ R?i=dt-iO3KxWm78 Q-m4VLJPuw. . > >> > >> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 Bob, This is an extremely frustrating issue. It's also complex. I see it like this. Interstitial lung disease (which is what we all have) is relatively rare. There are also not alot of solid statistics but it is generally said that there are approximately 200,000 people at any given time in the US with one of the approximately 200 forms if ILD. I've seen 5,000,000 as the number worldwide. That is a relatively small number when compared with the number of people with emphysema, COPD, asthma etc. The American Lung Association is useless for people with ILD in my humble opinion. They appear to be completely unconcerned with ILD and they will never see even a dollar donation from me. There is very limited treatment for most forms of ILD. Compared to obstructive lung disease like emphysema or COPD or even lung cancer there is very very little. So you see commercials on tv for the latest inhaler for asthma or things like that but not any ads for the latest treatment for IPF or NSIP. We are a relatively small population so we don't attract the "big bucks" for research. Organizations like the Pulmonary Fibrosis Foundation work their butts off to raise funds so that research can be done. Another piece of this puzzle is that our disease is invariably fatal. In my experience over the last few years we live alot longer than the oft quoted 2-3 years but we do die from this disease. 40,000 of us every years. Now 40,000 people also die of breast cancer every year BUT more than that survive breast cancer and some are cured. There is a whole legion of long term survivors of breast cancer out there. How many celebrities can you think of who have had breast cancer and gone public? I can think of a dozen or more without even having to think too hard. Breast cancer survivers are well organized, politically active and they raise millions every year. There aren't millions of fibrosis survivors out there raising money and lobbying congress. People like me with fibrosis are mostly working to survive another year. It makes it very difficult. We've also had only a handful of 'celebrities with fibrosis 'go public'. Evel Kneival was one of them God rest his soul. I realize that something like "Blue shirt Friday" seems like a tiny effort and not anything that will make much difference. Maybe it won't. But we must begin somewhere. The world is in many ways a smaller place than it was even 10 years ago. This group has brought us all together in a way that didn't exist a few years ago. We have a community. We have members all over the US and a few in other countries. There is an active Caregivers Group with similar membership. We have a Facebook page and I do think it will all make a difference, slowly, ever so slowly but change will come. If we wear our blue shirts on Friday (and talk to people about why we are wearing them), if we wear the wristbands and answer questions about them, if we call the Foundation and request brochures for our friends and families (and make a donation too please!) if we write to our representatives in congress and our senators, if we talk to our primary care doctors about what we are dealing with, we have to do all this and whatever else we can think of if we want things to change. Please forgive me for going on and on like this. This is an issue I get fairly passionate about. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sat, October 3, 2009 7:58:52 PMSubject: Re: Re: Another question Bruce, anne, Cees and others in the group, My name is Bob and I have been a member since Jan but have only posted a couple of times. A book to bring attention to this decease is a good idea but, to Cees point about the American Lung Association. The American LUNG Association. I get solicitation for contributions all the time in the mail, but PF is never mentioned. Most of us in the group never heard of this killer until we were diagnosed and told we'd die in 2 to 4 years! We all have heard of lung cancer...... and even COPD. I think we've heard of COPD mainly because the Pharmaceutical Co's are making a lot of money off the inhalers. I am reading about the Blue Shirt Friday by the members on this board but, unless its a national movement I don't think it will go much farther than this group, relatives and friends, not much more than a high school or company program. Blue shirts will make us feel good because at least we are doing something, but I think we need more than that. I'm new to all of this, and I probably am behind in efforts, but I don't understand why this is not a priority for the American LUNG Association. Sorry for the rant, but, Could anyone tell me a little more about all this? - From: ceesnews <ceesnews (AT) yahoo (DOT) com>Subject: Re: Another questionTo: Breathe-Support@ yahoogroups. comDate: Saturday, October 3, 2009, 6:55 PM Hi everyone,I just joined your group and hadn't planned to speak up anytime soon but found myself intrigued by your book idea. I've been a professional writer & editor most of my life and have taught college writing classes for the last 10 years. BUT -- like Jack -- except for being placed on disability because of PF/ILD, my life also remains relatively normal so far. The only real information I know is what I've researched myself, & I'm extremely frustrated by it. I don't even understand much of what you talk about on this group site.Even the American Lung Association concentrates mostly on COPD and has very little info about restrictive diseases. The Mayo Clinic, Jewish Center, specializing universities, etc. have more, but it's all helter-skelter & listed under different keywords. I hang on to the little bits of info that those of you who have actually been to these doctors mention on this site. I'm stuck with a pulmonologist from Kaiser-Permanente HMO who has only seen me 3 times in the year since I was diagnosed. I like him, but I have only 15-20 mins. each time to cram all my questions into.I don't even know whether to tell people I have PF or ILD, but it really doesn't matter because nobody has heard of either of them. Can you tell how frustrated I am?As Jack said so eloquently, "a book by us about us would not only be good for ourselves and others with our disease, but it would also educate the general public and perhaps boost spending for research."If I can do anything to help, please count me in. But I'd be better as an editor also since the only thing I could write about so far is my frustration (which I think is probably worthwhile to add but shouldn't be more than a page or 2).Thanks for letting me vent though. I really do think a book is a wonderful idea. When I sent the form email on HR 1079 to my Representative, I was surprised to learn that just as many people die annually from PF as breast cancer, and look how many books are out there on that topic. What the heck are we waiting for?I'm not quite sure how to sign off using your method because I don't understand some of the things you include, but I'll give it a try.Cees, 59 (for 2 more days!)S. Calif.PF/ILD 10/08> >> >> >>From: Soulliere <johnsbatik@ ...>> >>Subject: Another question> >>To: Breathe-Support@ yahoogroups. com> >>Date: Friday, October 2, 2009, 11:55 AM> >>> >>> >>My pulmoDR has put me on 40mg of predisone a day...that's two 20's> >>Do you think that's too much??> >> > >>> >>> >>> >>> >><FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1. .yimg.com/ us.yimg.com/ i/mesg/tsmileys2 /50.gif"></FONT>> >>> >>> >>> >>> >>> ____________ _________ _________ __> > >>To: "Breathe-Support@ yahoogrou" <Breathe-Support@ yahoogroups. com>; Breathe-SupportCare givers@yahoogrou ps.com> >>Sent: Thursday, October 1, 2009 9:51:39 PM> >>Subject: Fw: Keep Momentum Growing for PF Bill - Call Congress Now> >>> >> > >>> >>> >>> >>-- Keep Momentum Growing for PF Bill - Call Congress Now> >>> >> > >> > >>> >>Dear Joe: > >> > >>We are pleased to inform you the CPF's National Pulmonary Fibrosis Awareness Week was ahuge success! More than 12 Members of Congress signed on to the Pulmonary Fibrosis Research Enhancement Act (H.R. 1079) during and after PF Week bringing the total number of co-sponsors to 52, as of today. And the momentum is growing! We need your help now to add even more members to the bill! We need 100 Members on the bill to help it reach the floor of Congress. Please call or email your Member of Congress now! Click here to send a note quickly and easily through our automated system:http://cpf.convio. net/site/ Advocacy? pagename= homepage & id= 129 > >>Your hard work has brought us great success - we urgently need for you to take action once again to get us closer to our goal! Passing a bill in Congress requires persistence and patience and we hope you will be with us for the long run. For today, we need for you to check to see if your Representative is a co-sponsor and either thank them, if so, or directly request that they co-sponsor H.R. 1079. If you've called them before and they are still not on the bill, please call again. Find out if your member is a co-sponsor by clicking this link: Co-sponsors of HR 1079, Sept. 29, 2009 update> >>Success on Capitol Hill! > >>CPF CEO Mishka Michon (center) stands between PF Champions, Rep. Mike Castle and Rep. Baird, surrounded by National PF Awareness Week Advocates > >>During PF Week, determined advocates for action on PF, including patients and family members like you, held 60 meetings on Capitol Hill.. For the second year, advocates focused on securing support for passage of H.R. 1079 and continuing to raise awareness of PF issues to Members of Congress and in communities nationwide. The majority of the Capitol Hill meetings took place with Members who serve on the Energy & Commerce committee and on the Energy & Commerce subcommittee on health. The Energy & Commerce committee is the committee of jurisdiction for the PFREA. > >>The CPF and advocates also met with our champions, Congressman Baird (D-WA) and Congressman Mike Castle (R-DE) who introduced H.R. 1079. They stressed the bipartisan nature of the historic legislation that would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.. And they thanked you, our CPF membership, for driving the success of the bill! Both Congressmen have lost members of their families to PF..> >>Please help us build on the momentum created by PF Week -- Call or email your Member of Congress now! http://cpf.convio. net/site/ Advocacy? pagename= homepage & id= 129 > >>Thank you for your important support of H.R. 1079!> >>Sincerely, > >>Mishka Michon, CPF CEO> >> > >> > >> Coalition for Pulmonary Fibrosis> >>Suite F, #227> >>1659 Branham Lane> >>San , CA 95118-5226> >>> >>info@coalitionfor pf .org > >>> >>> >>forward to a friend | unsubscribe | http://cpf.convio. net/site/ R?i=dt-iO3KxWm78 Q-m4VLJPuw. . > >> > >> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 Cees, Welcome aboard! I'm glad you're here but I'm sorry you had reason to even want to seek us out. You touched on an issue that drives me crazy as well. I've had this illness for well over 3 years now and my fondest wish is that more people in the general public had at least some understanding of what it is. If you are hesitating to tell people what you have my suggestion would be tell them, explain it to them. Get some literature from the Foundation (www.pulmonaryfibrosis.org) and hand it to them. I've come to believe that I can't expect people to know about a disease that 4 years ago I had barely heard of and I'm a nurse! I'm so glad you are here with us and I hope that we can be of assitance. I look forward to getting to know you. A book does sound like a great idea, I am not a writer by any stretch of the imagination but I would be willing to help in whatever way I can. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sat, October 3, 2009 6:55:35 PMSubject: Re: Another question Hi everyone,I just joined your group and hadn't planned to speak up anytime soon but found myself intrigued by your book idea. I've been a professional writer & editor most of my life and have taught college writing classes for the last 10 years. BUT -- like Jack -- except for being placed on disability because of PF/ILD, my life also remains relatively normal so far. The only real information I know is what I've researched myself, & I'm extremely frustrated by it. I don't even understand much of what you talk about on this group site.Even the American Lung Association concentrates mostly on COPD and has very little info about restrictive diseases. The Mayo Clinic, Jewish Center, specializing universities, etc. have more, but it's all helter-skelter & listed under different keywords. I hang on to the little bits of info that those of you who have actually been to these doctors mention on this site. I'm stuck with a pulmonologist from Kaiser-Permanente HMO who has only seen me 3 times in the year since I was diagnosed. I like him, but I have only 15-20 mins. each time to cram all my questions into.I don't even know whether to tell people I have PF or ILD, but it really doesn't matter because nobody has heard of either of them. Can you tell how frustrated I am?As Jack said so eloquently, "a book by us about us would not only be good for ourselves and others with our disease, but it would also educate the general public and perhaps boost spending for research."If I can do anything to help, please count me in. But I'd be better as an editor also since the only thing I could write about so far is my frustration (which I think is probably worthwhile to add but shouldn't be more than a page or 2).Thanks for letting me vent though. I really do think a book is a wonderful idea. When I sent the form email on HR 1079 to my Representative, I was surprised to learn that just as many people die annually from PF as breast cancer, and look how many books are out there on that topic. What the heck are we waiting for?I'm not quite sure how to sign off using your method because I don't understand some of the things you include, but I'll give it a try.Cees, 59 (for 2 more days!)S. Calif.PF/ILD 10/08> >> >> >>From: Soulliere <johnsbatik@ ...>> >>Subject: Another question> >>To: Breathe-Support@ yahoogroups. com> >>Date: Friday, October 2, 2009, 11:55 AM> >>> >>> >>My pulmoDR has put me on 40mg of predisone a day...that's two 20's> >>Do you think that's too much??> >> > >>> >>> >>> >>> >><FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1. .yimg.com/ us.yimg.com/ i/mesg/tsmileys2 /50.gif"></FONT>> >>> >>> >>> >>> >>> ____________ _________ _________ __> > >>To: "Breathe-Support@ yahoogrou" <Breathe-Support@ yahoogroups. com>; Breathe-SupportCare givers@yahoogrou ps.com> >>Sent: Thursday, October 1, 2009 9:51:39 PM> >>Subject: Fw: Keep Momentum Growing for PF Bill - Call Congress Now> >>> >> > >>> >>> >>> >>-- Keep Momentum Growing for PF Bill - Call Congress Now> >>> >> > >> > >>> >>Dear Joe: > >> > >>We are pleased to inform you the CPF's National Pulmonary Fibrosis Awareness Week was ahuge success! More than 12 Members of Congress signed on to the Pulmonary Fibrosis Research Enhancement Act (H.R. 1079) during and after PF Week bringing the total number of co-sponsors to 52, as of today. And the momentum is growing! We need your help now to add even more members to the bill! We need 100 Members on the bill to help it reach the floor of Congress. Please call or email your Member of Congress now! Click here to send a note quickly and easily through our automated system:http://cpf.convio. net/site/ Advocacy? pagename= homepage & id= 129 > >>Your hard work has brought us great success - we urgently need for you to take action once again to get us closer to our goal! Passing a bill in Congress requires persistence and patience and we hope you will be with us for the long run. For today, we need for you to check to see if your Representative is a co-sponsor and either thank them, if so, or directly request that they co-sponsor H.R. 1079. If you've called them before and they are still not on the bill, please call again. Find out if your member is a co-sponsor by clicking this link: Co-sponsors of HR 1079, Sept. 29, 2009 update> >>Success on Capitol Hill! > >>CPF CEO Mishka Michon (center) stands between PF Champions, Rep. Mike Castle and Rep. Baird, surrounded by National PF Awareness Week Advocates > >>During PF Week, determined advocates for action on PF, including patients and family members like you, held 60 meetings on Capitol Hill.. For the second year, advocates focused on securing support for passage of H.R. 1079 and continuing to raise awareness of PF issues to Members of Congress and in communities nationwide. The majority of the Capitol Hill meetings took place with Members who serve on the Energy & Commerce committee and on the Energy & Commerce subcommittee on health. The Energy & Commerce committee is the committee of jurisdiction for the PFREA. > >>The CPF and advocates also met with our champions, Congressman Baird (D-WA) and Congressman Mike Castle (R-DE) who introduced H.R. 1079. They stressed the bipartisan nature of the historic legislation that would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.. And they thanked you, our CPF membership, for driving the success of the bill! Both Congressmen have lost members of their families to PF..> >>Please help us build on the momentum created by PF Week -- Call or email your Member of Congress now! http://cpf.convio. net/site/ Advocacy? pagename= homepage & id= 129 > >>Thank you for your important support of H.R. 1079!> >>Sincerely, > >>Mishka Michon, CPF CEO> >> > >> > >> Coalition for Pulmonary Fibrosis> >>Suite F, #227> >>1659 Branham Lane> >>San , CA 95118-5226> >>> >>info@coalitionfor pf .org > >>> >>> >>forward to a friend | unsubscribe | http://cpf.convio. net/site/ R?i=dt-iO3KxWm78 Q-m4VLJPuw. . > >> > >> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 Beth, Thanks for your reply, you make very good sense, and I am frustrated also. As I run into old friends from time to time and they ask, about the O2, I tell them I have IPF and most of the time they say "OH" with a puzzled look on their face. So, I explain IPF to some degree but it seems if I tell them how deadly the disease really is, its like I'm looking for sympathy or something. I will direct future contributions to organizations other than the American Lung Association. Bob IPF Jan 09, 5 Bypasses 9/12/01 From: ceesnews <ceesnews (AT) yahoo (DOT) com>Subject: Re: Another questionTo: Breathe-Support@ yahoogroups. comDate: Saturday, October 3, 2009, 6:55 PM Hi everyone,I just joined your group and hadn't planned to speak up anytime soon but found myself intrigued by your book idea. I've been a professional writer & editor most of my life and have taught college writing classes for the last 10 years. BUT -- like Jack -- except for being placed on disability because of PF/ILD, my life also remains relatively normal so far. The only real information I know is what I've researched myself, & I'm extremely frustrated by it. I don't even understand much of what you talk about on this group site.Even the American Lung Association concentrates mostly on COPD and has very little info about restrictive diseases. The Mayo Clinic, Jewish Center, specializing universities, etc. have more, but it's all helter-skelter & listed under different keywords. I hang on to the little bits of info that those of you who have actually been to these doctors mention on this site. I'm stuck with a pulmonologist from Kaiser-Permanente HMO who has only seen me 3 times in the year since I was diagnosed. I like him, but I have only 15-20 mins. each time to cram all my questions into.I don't even know whether to tell people I have PF or ILD, but it really doesn't matter because nobody has heard of either of them. Can you tell how frustrated I am?As Jack said so eloquently, "a book by us about us would not only be good for ourselves and others with our disease, but it would also educate the general public and perhaps boost spending for research."If I can do anything to help, please count me in. But I'd be better as an editor also since the only thing I could write about so far is my frustration (which I think is probably worthwhile to add but shouldn't be more than a page or 2).Thanks for letting me vent though. I really do think a book is a wonderful idea. When I sent the form email on HR 1079 to my Representative, I was surprised to learn that just as many people die annually from PF as breast cancer, and look how many books are out there on that topic. What the heck are we waiting for?I'm not quite sure how to sign off using your method because I don't understand some of the things you include, but I'll give it a try.Cees, 59 (for 2 more days!)S. Calif.PF/ILD 10/08> >> >> >>From: Soulliere <johnsbatik@ ...>> >>Subject: Another question> >>To: Breathe-Support@ yahoogroups. com> >>Date: Friday, October 2, 2009, 11:55 AM> >>> >>> >>My pulmoDR has put me on 40mg of predisone a day...that's two 20's> >>Do you think that's too much??> >> > >>> >>> >>> >>> >><FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1. .yimg.com/ us.yimg.com/ i/mesg/tsmileys2 /50.gif"></FONT>> >>> >>> >>> >>> >>> ____________ _________ _________ __> > >>To: "Breathe-Support@ yahoogrou" <Breathe-Support@ yahoogroups. com>; Breathe-SupportCare givers@yahoogrou ps.com> >>Sent: Thursday, October 1, 2009 9:51:39 PM> >>Subject: Fw: Keep Momentum Growing for PF Bill - Call Congress Now> >>> >> > >>> >>> >>> >>-- Keep Momentum Growing for PF Bill - Call Congress Now> >>> >> > >> > >>> >>Dear Joe: > >> > >>We are pleased to inform you the CPF's National Pulmonary Fibrosis Awareness Week was ahuge success! More than 12 Members of Congress signed on to the Pulmonary Fibrosis Research Enhancement Act (H.R. 1079) during and after PF Week bringing the total number of co-sponsors to 52, as of today. And the momentum is growing! We need your help now to add even more members to the bill! We need 100 Members on the bill to help it reach the floor of Congress. Please call or email your Member of Congress now! Click here to send a note quickly and easily through our automated system:http://cpf.convio. net/site/ Advocacy? pagename= homepage & id= 129 > >>Your hard work has brought us great success - we urgently need for you to take action once again to get us closer to our goal! Passing a bill in Congress requires persistence and patience and we hope you will be with us for the long run. For today, we need for you to check to see if your Representative is a co-sponsor and either thank them, if so, or directly request that they co-sponsor H.R. 1079. If you've called them before and they are still not on the bill, please call again. Find out if your member is a co-sponsor by clicking this link: Co-sponsors of HR 1079, Sept. 29, 2009 update> >>Success on Capitol Hill! > >>CPF CEO Mishka Michon (center) stands between PF Champions, Rep. Mike Castle and Rep. Baird, surrounded by National PF Awareness Week Advocates > >>During PF Week, determined advocates for action on PF, including patients and family members like you, held 60 meetings on Capitol Hill.. For the second year, advocates focused on securing support for passage of H.R. 1079 and continuing to raise awareness of PF issues to Members of Congress and in communities nationwide. The majority of the Capitol Hill meetings took place with Members who serve on the Energy & Commerce committee and on the Energy & Commerce subcommittee on health. The Energy & Commerce committee is the committee of jurisdiction for the PFREA. > >>The CPF and advocates also met with our champions, Congressman Baird (D-WA) and Congressman Mike Castle (R-DE) who introduced H.R. 1079. They stressed the bipartisan nature of the historic legislation that would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.. And they thanked you, our CPF membership, for driving the success of the bill! Both Congressmen have lost members of their families to PF..> >>Please help us build on the momentum created by PF Week -- Call or email your Member of Congress now! http://cpf.convio. net/site/ Advocacy? pagename= homepage & id= 129 > >>Thank you for your important support of H.R. 1079!> >>Sincerely, > >>Mishka Michon, CPF CEO> >> > >> > >> Coalition for Pulmonary Fibrosis> >>Suite F, #227> >>1659 Branham Lane> >>San , CA 95118-5226> >>> >>info@coalitionfor pf .org > >>> >>> >>forward to a friend | unsubscribe | http://cpf.convio. net/site/ R?i=dt-iO3KxWm78 Q-m4VLJPuw. . > >> > >> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 Just out of curiosity, are there any books out there regarding PF, etc.? I have been unable to locate any. Can not figure out if I am merely not looking it up correctly or if nothing has been published regarding pf. Please advise.IPF/NSIP 08 NC Subject: Another questionTo: Breathe-Support Date: Friday, October 2, 2009, 11:55 AM My pulmoDR has put me on 40mg of predisone a day...that's two 20's Do you think that's too much?? <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1..yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> To: "Breathe-Support@yahoogrou" <Breathe-Support >; Breathe-SupportCaregivers Sent: Thursday, October 1, 2009 9:51:39 PMSubject: Fw: Keep Momentum Growing for PF Bill - Call Congress Now -- Keep Momentum Growing for PF Bill - Call Congress Now Dear Joe: We are pleased to inform you the CPF's National Pulmonary Fibrosis Awareness Week was a huge success! More than 12 Members of Congress signed on to the Pulmonary Fibrosis Research Enhancement Act (H.R. 1079) during and after PF Week bringing the total number of co-sponsors to 52, as of today. And the momentum is growing! We need your help now to add even more members to the bill! We need 100 Members on the bill to help it reach the floor of Congress. Please call or email your Member of Congress now! Click here to send a note quickly and easily through our automated system:http://cpf.convio. net/site/ Advocacy? pagename= homepage & id=129 Your hard work has brought us great success - we urgently need for you to take action once again to get us closer to our goal! Passing a bill in Congress requires persistence and patience and we hope you will be with us for the long run. For today, we need for you to check to see if your Representative is a co-sponsor and either thank them, if so, or directly request that they co-sponsor H.R. 1079. If you've called them before and they are still not on the bill, please call again. Find out if your member is a co-sponsor by clicking this link: Co-sponsors of HR 1079, Sept. 29, 2009 update Success on Capitol Hill! CPF CEO Mishka Michon (center) stands between PF Champions, Rep. Mike Castle and Rep. Baird, surrounded by National PF Awareness Week Advocates During PF Week, determined advocates for action on PF, including patients and family members like you, held 60 meetings on Capitol Hill. For the second year, advocates focused on securing support for passage of H.R. 1079 and continuing to raise awareness of PF issues to Members of Congress and in communities nationwide. The majority of the Capitol Hill meetings took place with Members who serve on the Energy & Commerce committee and on the Energy & Commerce subcommittee on health. The Energy & Commerce committee is the committee of jurisdiction for the PFREA. The CPF and advocates also met with our champions, Congressman Baird (D-WA) and Congressman Mike Castle (R-DE) who introduced H.R. 1079. They stressed the bipartisan nature of the historic legislation that would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.. And they thanked you, our CPF membership, for driving the success of the bill! Both Congressmen have lost members of their families to PF.. Please help us build on the momentum created by PF Week -- Call or email your Member of Congress now! http://cpf.convio. net/site/ Advocacy? pagename= homepage & id=129 Thank you for your important support of H.R. 1079! Sincerely, Mishka Michon, CPF CEO Coalition for Pulmonary FibrosisSuite F, #2271659 Branham LaneSan , CA 95118-5226info@coalitionforpf .org forward to a friend | unsubscribe | http://cpf.convio.net/site/R?i=dt-iO3KxWm78Q-m4VLJPuw.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2009 Report Share Posted October 4, 2009 , There is a short book that is out of print but available on line Book by Barry and Kerry “Never Tell Them You’re Dying” http://books.google.com/ I read this in early 2008 and it appears to still be available for reading on-line. Ken Baker 67 UIP/IPF 12/05 New Hampshire Currently participating in RECAP pirfenidone study From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Lainfiesta Sent: Saturday, October 03, 2009 11:53 PM To: Breathe-Support Subject: Re: Another question Just out of curiosity, are there any books out there regarding PF, etc.? I have been unable to locate any. Can not figure out if I am merely not looking it up correctly or if nothing has been published regarding pf. Please advise. IPF/NSIP 08 NC Subject: Another question To: Breathe-Support Date: Friday, October 2, 2009, 11:55 AM My pulmoDR has put me on 40mg of predisone a day...that's two 20's Do you think that's too much?? <FONT face= " comic sans ms " color=#40007f size=3> Soulliere & nbsp; <IMG src= " http://us.i1..yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif " ></FONT> From: JOE & JOANIE LAMENSKIE To: " Breathe-Support@yahoogrou " <Breathe-Support >; Breathe-SupportCaregivers Sent: Thursday, October 1, 2009 9:51:39 PM Subject: Fw: Keep Momentum Growing for PF Bill - Call Congress Now -- Keep Momentum Growing for PF Bill - Call Congress Now Dear Joe: We are pleased to inform you the CPF's National Pulmonary Fibrosis Awareness Week was a huge success! More than 12 Members of Congress signed on to the Pulmonary Fibrosis Research Enhancement Act (H.R. 1079) during and after PF Week bringing the total number of co-sponsors to 52, as of today. And the momentum is growing! We need your help now to add even more members to the bill! We need 100 Members on the bill to help it reach the floor of Congress. Please call or email your Member of Congress now! Click here to send a note quickly and easily through our automated system:http://cpf.convio. net/site/ Advocacy? pagename= homepage & id=129 Your hard work has brought us great success - we urgently need for you to take action once again to get us closer to our goal! Passing a bill in Congress requires persistence and patience and we hope you will be with us for the long run. For today, we need for you to check to see if your Representative is a co-sponsor and either thank them, if so, or directly request that they co-sponsor H.R. 1079. If you've called them before and they are still not on the bill, please call again. Find out if your member is a co-sponsor by clicking this link: Co-sponsors of HR 1079, Sept. 29, 2009 update Success on Capitol Hill! CPF CEO Mishka Michon (center) stands between PF Champions, Rep. Mike Castle and Rep. Baird, surrounded by National PF Awareness Week Advocates During PF Week, determined advocates for action on PF, including patients and family members like you, held 60 meetings on Capitol Hill. For the second year, advocates focused on securing support for passage of H.R. 1079 and continuing to raise awareness of PF issues to Members of Congress and in communities nationwide. The majority of the Capitol Hill meetings took place with Members who serve on the Energy & Commerce committee and on the Energy & Commerce subcommittee on health. The Energy & Commerce committee is the committee of jurisdiction for the PFREA. The CPF and advocates also met with our champions, Congressman Baird (D-WA) and Congressman Mike Castle (R-DE) who introduced H.R. 1079. They stressed the bipartisan nature of the historic legislation that would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.. And they thanked you, our CPF membership, for driving the success of the bill! Both Congressmen have lost members of their families to PF.. Please help us build on the momentum created by PF Week -- Call or email your Member of Congress now! http://cpf.convio. net/site/ Advocacy? pagename= homepage & id=129 Thank you for your important support of H.R. 1079! Sincerely, Mishka Michon, CPF CEO Coalition for Pulmonary Fibrosis Suite F, #227 1659 Branham Lane San , CA 95118-5226 info@coalitionforpf .org forward to a friend | unsubscribe | http://cpf.convio.net/site/R?i=dt-iO3KxWm78Q-m4VLJPuw.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2009 Report Share Posted October 5, 2009 i agree with you regarding the american lung association Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: Another questionTo: Breathe-Support Date: Saturday, October 3, 2009, 7:58 PM Bruce, anne, Cees and others in the group, My name is Bob and I have been a member since Jan but have only posted a couple of times. A book to bring attention to this decease is a good idea but, to Cees point about the American Lung Association. The American LUNG Association. I get solicitation for contributions all the time in the mail, but PF is never mentioned. Most of us in the group never heard of this killer until we were diagnosed and told we'd die in 2 to 4 years! We all have heard of lung cancer...... and even COPD. I think we've heard of COPD mainly because the Pharmaceutical Co's are making a lot of money off the inhalers. I am reading about the Blue Shirt Friday by the members on this board but, unless its a national movement I don't think it will go much farther than this group, relatives and friends, not much more than a high school or company program. Blue shirts will make us feel good because at least we are doing something, but I think we need more than that. I'm new to all of this, and I probably am behind in efforts, but I don't understand why this is not a priority for the American LUNG Association. Sorry for the rant, but, Could anyone tell me a little more about all this? - From: ceesnews <ceesnews (AT) yahoo (DOT) com>Subject: Re: Another questionTo: Breathe-Support@ yahoogroups. comDate: Saturday, October 3, 2009, 6:55 PM Hi everyone,I just joined your group and hadn't planned to speak up anytime soon but found myself intrigued by your book idea. I've been a professional writer & editor most of my life and have taught college writing classes for the last 10 years. BUT -- like Jack -- except for being placed on disability because of PF/ILD, my life also remains relatively normal so far. The only real information I know is what I've researched myself, & I'm extremely frustrated by it. I don't even understand much of what you talk about on this group site.Even the American Lung Association concentrates mostly on COPD and has very little info about restrictive diseases. The Mayo Clinic, Jewish Center, specializing universities, etc. have more, but it's all helter-skelter & listed under different keywords. I hang on to the little bits of info that those of you who have actually been to these doctors mention on this site. I'm stuck with a pulmonologist from Kaiser-Permanente HMO who has only seen me 3 times in the year since I was diagnosed. I like him, but I have only 15-20 mins. each time to cram all my questions into.I don't even know whether to tell people I have PF or ILD, but it really doesn't matter because nobody has heard of either of them. Can you tell how frustrated I am?As Jack said so eloquently, "a book by us about us would not only be good for ourselves and others with our disease, but it would also educate the general public and perhaps boost spending for research."If I can do anything to help, please count me in. But I'd be better as an editor also since the only thing I could write about so far is my frustration (which I think is probably worthwhile to add but shouldn't be more than a page or 2).Thanks for letting me vent though. I really do think a book is a wonderful idea. When I sent the form email on HR 1079 to my Representative, I was surprised to learn that just as many people die annually from PF as breast cancer, and look how many books are out there on that topic. What the heck are we waiting for?I'm not quite sure how to sign off using your method because I don't understand some of the things you include, but I'll give it a try.Cees, 59 (for 2 more days!)S. Calif.PF/ILD 10/08> >> >> >>From: Soulliere <johnsbatik@ ...>> >>Subject: Another question> >>To: Breathe-Support@ yahoogroups. com> >>Date: Friday, October 2, 2009, 11:55 AM> >>> >>> >>My pulmoDR has put me on 40mg of predisone a day...that's two 20's> >>Do you think that's too much??> >> > >>> >>> >>> >>> >><FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1. .yimg.com/ us.yimg.com/ i/mesg/tsmileys2 /50.gif"></FONT>> >>> >>> >>> >>> >>> ____________ _________ _________ __> > >>To: "Breathe-Support@ yahoogrou" <Breathe-Support@ yahoogroups. com>; Breathe-SupportCare givers@yahoogrou ps.com> >>Sent: Thursday, October 1, 2009 9:51:39 PM> >>Subject: Fw: Keep Momentum Growing for PF Bill - Call Congress Now> >>> >> > >>> >>> >>> >>-- Keep Momentum Growing for PF Bill - Call Congress Now> >>> >> > >> > >>> >>Dear Joe: > >> > >>We are pleased to inform you the CPF's National Pulmonary Fibrosis Awareness Week was ahuge success! More than 12 Members of Congress signed on to the Pulmonary Fibrosis Research Enhancement Act (H.R. 1079) during and after PF Week bringing the total number of co-sponsors to 52, as of today. And the momentum is growing! We need your help now to add even more members to the bill! We need 100 Members on the bill to help it reach the floor of Congress. Please call or email your Member of Congress now! Click here to send a note quickly and easily through our automated system:http://cpf.convio. net/site/ Advocacy? pagename= homepage & id= 129 > >>Your hard work has brought us great success - we urgently need for you to take action once again to get us closer to our goal! Passing a bill in Congress requires persistence and patience and we hope you will be with us for the long run. For today, we need for you to check to see if your Representative is a co-sponsor and either thank them, if so, or directly request that they co-sponsor H.R. 1079. If you've called them before and they are still not on the bill, please call again. Find out if your member is a co-sponsor by clicking this link: Co-sponsors of HR 1079, Sept. 29, 2009 update> >>Success on Capitol Hill! > >>CPF CEO Mishka Michon (center) stands between PF Champions, Rep. Mike Castle and Rep. Baird, surrounded by National PF Awareness Week Advocates > >>During PF Week, determined advocates for action on PF, including patients and family members like you, held 60 meetings on Capitol Hill.. For the second year, advocates focused on securing support for passage of H.R. 1079 and continuing to raise awareness of PF issues to Members of Congress and in communities nationwide. The majority of the Capitol Hill meetings took place with Members who serve on the Energy & Commerce committee and on the Energy & Commerce subcommittee on health. The Energy & Commerce committee is the committee of jurisdiction for the PFREA. > >>The CPF and advocates also met with our champions, Congressman Baird (D-WA) and Congressman Mike Castle (R-DE) who introduced H.R. 1079. They stressed the bipartisan nature of the historic legislation that would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.. And they thanked you, our CPF membership, for driving the success of the bill! Both Congressmen have lost members of their families to PF..> >>Please help us build on the momentum created by PF Week -- Call or email your Member of Congress now! http://cpf.convio. net/site/ Advocacy? pagename= homepage & id= 129 > >>Thank you for your important support of H.R. 1079!> >>Sincerely, > >>Mishka Michon, CPF CEO> >> > >> > >> Coalition for Pulmonary Fibrosis> >>Suite F, #227> >>1659 Branham Lane> >>San , CA 95118-5226> >>> >>info@coalitionfor pf .org > >>> >>> >>forward to a friend | unsubscribe | http://cpf.convio. net/site/ R?i=dt-iO3KxWm78 Q-m4VLJPuw. . > >> > >> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2009 Report Share Posted October 5, 2009 Beth, What is the Facebook page name? From: ceesnews <ceesnews (AT) yahoo (DOT) com>Subject: Re: Another questionTo: Breathe-Support@ yahoogroups. comDate: Saturday, October 3, 2009, 6:55 PM Hi everyone,I just joined your group and hadn't planned to speak up anytime soon but found myself intrigued by your book idea. I've been a professional writer & editor most of my life and have taught college writing classes for the last 10 years. BUT -- like Jack -- except for being placed on disability because of PF/ILD, my life also remains relatively normal so far. The only real information I know is what I've researched myself, & I'm extremely frustrated by it. I don't even understand much of what you talk about on this group site.Even the American Lung Association concentrates mostly on COPD and has very little info about restrictive diseases. The Mayo Clinic, Jewish Center, specializing universities, etc. have more, but it's all helter-skelter & listed under different keywords. I hang on to the little bits of info that those of you who have actually been to these doctors mention on this site. I'm stuck with a pulmonologist from Kaiser-Permanente HMO who has only seen me 3 times in the year since I was diagnosed. I like him, but I have only 15-20 mins. each time to cram all my questions into.I don't even know whether to tell people I have PF or ILD, but it really doesn't matter because nobody has heard of either of them. Can you tell how frustrated I am?As Jack said so eloquently, "a book by us about us would not only be good for ourselves and others with our disease, but it would also educate the general public and perhaps boost spending for research."If I can do anything to help, please count me in. But I'd be better as an editor also since the only thing I could write about so far is my frustration (which I think is probably worthwhile to add but shouldn't be more than a page or 2).Thanks for letting me vent though. I really do think a book is a wonderful idea. When I sent the form email on HR 1079 to my Representative, I was surprised to learn that just as many people die annually from PF as breast cancer, and look how many books are out there on that topic. What the heck are we waiting for?I'm not quite sure how to sign off using your method because I don't understand some of the things you include, but I'll give it a try.Cees, 59 (for 2 more days!)S. Calif.PF/ILD 10/08> >> >> >>From: Soulliere <johnsbatik@ ...>> >>Subject: Another question> >>To: Breathe-Support@ yahoogroups. com> >>Date: Friday, October 2, 2009, 11:55 AM> >>> >>> >>My pulmoDR has put me on 40mg of predisone a day...that's two 20's> >>Do you think that's too much??> >> > >>> >>> >>> >>> >><FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1. .yimg.com/ us.yimg.com/ i/mesg/tsmileys2 /50.gif"></FONT>> >>> >>> >>> >>> >>> ____________ _________ _________ __> > >>To: "Breathe-Support@ yahoogrou" <Breathe-Support@ yahoogroups. com>; Breathe-SupportCare givers@yahoogrou ps.com> >>Sent: Thursday, October 1, 2009 9:51:39 PM> >>Subject: Fw: Keep Momentum Growing for PF Bill - Call Congress Now> >>> >> > >>> >>> >>> >>-- Keep Momentum Growing for PF Bill - Call Congress Now> >>> >> > >> > >>> >>Dear Joe: > >> > >>We are pleased to inform you the CPF's National Pulmonary Fibrosis Awareness Week was ahuge success! More than 12 Members of Congress signed on to the Pulmonary Fibrosis Research Enhancement Act (H.R. 1079) during and after PF Week bringing the total number of co-sponsors to 52, as of today. And the momentum is growing! We need your help now to add even more members to the bill! We need 100 Members on the bill to help it reach the floor of Congress. Please call or email your Member of Congress now! Click here to send a note quickly and easily through our automated system:http://cpf.convio. net/site/ Advocacy? pagename= homepage & id= 129 > >>Your hard work has brought us great success - we urgently need for you to take action once again to get us closer to our goal! Passing a bill in Congress requires persistence and patience and we hope you will be with us for the long run. For today, we need for you to check to see if your Representative is a co-sponsor and either thank them, if so, or directly request that they co-sponsor H.R. 1079. If you've called them before and they are still not on the bill, please call again. Find out if your member is a co-sponsor by clicking this link: Co-sponsors of HR 1079, Sept. 29, 2009 update> >>Success on Capitol Hill! > >>CPF CEO Mishka Michon (center) stands between PF Champions, Rep. Mike Castle and Rep. Baird, surrounded by National PF Awareness Week Advocates > >>During PF Week, determined advocates for action on PF, including patients and family members like you, held 60 meetings on Capitol Hill.. For the second year, advocates focused on securing support for passage of H.R. 1079 and continuing to raise awareness of PF issues to Members of Congress and in communities nationwide. The majority of the Capitol Hill meetings took place with Members who serve on the Energy & Commerce committee and on the Energy & Commerce subcommittee on health. The Energy & Commerce committee is the committee of jurisdiction for the PFREA. > >>The CPF and advocates also met with our champions, Congressman Baird (D-WA) and Congressman Mike Castle (R-DE) who introduced H.R. 1079. They stressed the bipartisan nature of the historic legislation that would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.. And they thanked you, our CPF membership, for driving the success of the bill! Both Congressmen have lost members of their families to PF..> >>Please help us build on the momentum created by PF Week -- Call or email your Member of Congress now! http://cpf.convio. net/site/ Advocacy? pagename= homepage & id= 129 > >>Thank you for your important support of H.R. 1079!> >>Sincerely, > >>Mishka Michon, CPF CEO> >> > >> > >> Coalition for Pulmonary Fibrosis> >>Suite F, #227> >>1659 Branham Lane> >>San , CA 95118-5226> >>> >>info@coalitionfor pf .org > >>> >>> >>forward to a friend | unsubscribe | http://cpf.convio. net/site/ R?i=dt-iO3KxWm78 Q-m4VLJPuw. . > >> > >> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
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