Guest guest Posted September 17, 2009 Report Share Posted September 17, 2009 > > > > > > > > > > > > > > > > > > Hi Group, > > > I was curious to know if anyone is planning to attend the IPF Seminar in PA on Monday 9/14/09? > > > AB > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2009 Report Share Posted September 17, 2009 Hi Joyce, A very long time ago we made it the Sesame Place. I have been in burg since 1980. I had to work on Tuesday. Thanks, Luke > > > > > > > > > > > > > > > > > > Hi Group, > > > I was curious to know if anyone is planning to attend the IPF Seminar in PA on Monday 9/14/09? > > > AB > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2009 Report Share Posted September 20, 2009 In this last message I had written a moderatly long discription of the seminar. But alas some how all I wrote got lost. I am sorry. I do not have the heart to recreat it right now. Luke > > > > > > > > > > > > > > > > > > > > > > > > Hi Group, > > > > I was curious to know if anyone is planning to attend the IPF Seminar in PA on Monday 9/14/09? > > > > AB > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2009 Report Share Posted September 20, 2009 Hi Luke, Not to worry. Thanks for even trying. Just take care of yourself. Adrienne Subject: Re: IPF Seminar in PATo: Breathe-Support Date: Sunday, September 20, 2009, 1:17 PM In this last message I had written a moderatly long discription of the seminar. But alas some how all I wrote got lost.I am sorry. I do not have the heart to recreat it right now.Luke > > > > > > > > > > > > > > > > > > > > > > > > Hi Group,> > > > I was curious to know if anyone is planning to attend the IPF Seminar in PA on Monday 9/14/09?> > > > AB> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2009 Report Share Posted September 20, 2009 Hi Adrienne, I got to it. The PA- IPF Advocacy Event in burg had about 100 people in attendance. There were 37 patents in attendance most of whom came with some one. There were 14 speakers and an introduction. There was no recording of the talks. They may be able to post some of the Power Point presentations. What follows is a very sort description of each talk. I am a bad note taker. The introduction stated the need for recognition and understanding of IPF. The 1st talk was about how the PA-IPF registry got started. The 2nd talk was encouragement to sign up for the PA_IPF registry. The 3rd talk was a description of were the current members of the registry are from. The 4th talk was Charolatte Saunders, an IPF lung transplant with her story. She was a very dynamic before IPF and she struggled with it until she got a transplant and was able to get back some of her energy. The 5th talk was a theory of how Pulmonary Fibrosis works. They are reasonable confident they have this figured out. A lining in the lung gets damaged and the repair effort gets off track. The 6th talk was a description of what can be done now: O2, some times drugs help, pulmonary rehab, lung transplant and there is some hope with clinical trials. The 7th talk was a description of the various O2 systems and pulmonary rehab. They recommend liquid O2 for now. The pulmonary rehab should be aerobic exercises to strengthen and tune muscles. The 8th talk was a review of the rules governing transplant eligibility and the current statistics. The 9th talk was the need to keep as health as you can. Not all setbacks are caused by IPF. Have yourself checked out it may be something else that can be fixed. It has been there observation that everyone experience with IPF is different. The 10th talk was on occupational exposures. Many kinds' of exposures were presented. It is very difficult and could backfire to try and claim an occupational exposure. They would like to have this in the state registry for research but they would need a complete occupational history on each person to be really useful. The 11th talk was on a possible role of stem cells from the blood contributing to the repair going bad in the lungs. The 12th talk was on the genetics of IPF. It appears there are many distinctive changes in the genes that are associated with PF. Having all the different markers associated with IPF could help explain how each person has a different history with IPF. They may even be able to diagnose and track it with what they are learning. They have been able to cure mice that they gave fibrosis too. The 13th talk was by Beren a former member of the state General Assembly. He told his story. His wife died of IPF in 2006. They had worked to get the PA-IPF registry. The 14th talk was from Pulmonary fibrosis Foundation about their organization. The 15th talk was from the Coalition for Pulmonary fibrosis about their organization. Between the 12th and 13th talk we had a very good buffet lunch. I hope this helps. Luke J. Nester > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi Group, > > > > > I was curious to know if anyone is planning to attend the IPF Seminar in PA on Monday 9/14/09? > > > > > AB > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2009 Report Share Posted September 20, 2009 Luke, Thank you so much for your review of the seminar. I knew about the PF registry and attempted to be listed . They said that NSIP patients were not being listed! They did not give me an explanation at the time. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower ljnester wrote: Hi Adrienne, I got to it. The PA- IPF Advocacy Event in burg had about 100 people in attendance. There were 37 patents in attendance most of whom came with some one. There were 14 speakers and an introduction. There was no recording of the talks. They may be able to post some of the Power Point presentations. What follows is a very sort description of each talk. I am a bad note taker. The introduction stated the need for recognition and understanding of IPF. The 1st talk was about how the PA-IPF registry got started. The 2nd talk was encouragement to sign up for the PA_IPF registry. The 3rd talk was a description of were the current members of the registry are from. The 4th talk was Charolatte Saunders, an IPF lung transplant with her story. She was a very dynamic before IPF and she struggled with it until she got a transplant and was able to get back some of her energy. The 5th talk was a theory of how Pulmonary Fibrosis works. They are reasonable confident they have this figured out. A lining in the lung gets damaged and the repair effort gets off track. The 6th talk was a description of what can be done now: O2, some times drugs help, pulmonary rehab, lung transplant and there is some hope with clinical trials. The 7th talk was a description of the various O2 systems and pulmonary rehab. They recommend liquid O2 for now. The pulmonary rehab should be aerobic exercises to strengthen and tune muscles. The 8th talk was a review of the rules governing transplant eligibility and the current statistics. The 9th talk was the need to keep as health as you can. Not all setbacks are caused by IPF. Have yourself checked out it may be something else that can be fixed. It has been there observation that everyone experience with IPF is different. The 10th talk was on occupational exposures. Many kinds' of exposures were presented. It is very difficult and could backfire to try and claim an occupational exposure. They would like to have this in the state registry for research but they would need a complete occupational history on each person to be really useful. The 11th talk was on a possible role of stem cells from the blood contributing to the repair going bad in the lungs. The 12th talk was on the genetics of IPF. It appears there are many distinctive changes in the genes that are associated with PF. Having all the different markers associated with IPF could help explain how each person has a different history with IPF. They may even be able to diagnose and track it with what they are learning. They have been able to cure mice that they gave fibrosis too. The 13th talk was by Beren a former member of the state General Assembly. He told his story. His wife died of IPF in 2006. They had worked to get the PA-IPF registry. The 14th talk was from Pulmonary fibrosis Foundation about their organization. The 15th talk was from the Coalition for Pulmonary fibrosis about their organization. Between the 12th and 13th talk we had a very good buffet lunch. I hope this helps. Luke J. Nester > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi Group, > > > > > I was curious to know if anyone is planning to attend the IPF Seminar in PA on Monday 9/14/09? > > > > > AB > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2009 Report Share Posted September 21, 2009 Hi Luke thanks for the summary do you still have any of the handouts? why did they recommend liquid O2? what about the stem cells? my pulmonary doc recently informed me of the registry Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: IPF Seminar in PATo: Breathe-Support Date: Sunday, September 20, 2009, 9:53 PM Hi Adrienne,I got to it.The PA- IPF Advocacy Event in burg had about 100 people in attendance.There were 37 patents in attendance most of whom came with some one. There were 14 speakers and an introduction. There was no recording of the talks. They may be able to post some of the Power Point presentations. What follows is a very sort description of each talk. I am a bad note taker. The introduction stated the need for recognition and understanding of IPF. The 1st talk was about how the PA-IPF registry got started.The 2nd talk was encouragement to sign up for the PA_IPF registry. The 3rd talk was a description of were the current members of the registry are from.The 4th talk was Charolatte Saunders, an IPF lung transplant with her story.She was a very dynamic before IPF and she struggled with it until she got a transplant and was able to get back some of her energy.The 5th talk was a theory of how Pulmonary Fibrosis works. They are reasonable confident they have this figured out. A lining in the lung gets damaged and the repair effort gets off track. The 6th talk was a description of what can be done now: O2, some times drugs help, pulmonary rehab, lung transplant and there is some hope with clinical trials.The 7th talk was a description of the various O2 systems and pulmonary rehab. They recommend liquid O2 for now. The pulmonary rehab should be aerobic exercises to strengthen and tune muscles. The 8th talk was a review of the rules governing transplant eligibility and the current statistics.The 9th talk was the need to keep as health as you can. Not all setbacks are caused by IPF.Have yourself checked out it may be something else that can be fixed. It has been there observation that everyone experience with IPF is different.The 10th talk was on occupational exposures. Many kinds' of exposures were presented.It is very difficult and could backfire to try and claim an occupational exposure. They would like to have this in the state registry for research but they would need a complete occupational history on each person to be really useful.The 11th talk was on a possible role of stem cells from the blood contributing to the repair going bad in the lungs.The 12th talk was on the genetics of IPF. It appears there are many distinctive changes in the genes that are associated with PF. Having all the different markers associated with IPF could help explain how each person has a different history with IPF.They may even be able to diagnose and track it with what they are learning. They have been able to cure mice that they gave fibrosis too.The 13th talk was by Beren a former member of the state General Assembly. He told his story. His wife died of IPF in 2006. They had worked to get the PA-IPF registry. The 14th talk was from Pulmonary fibrosis Foundation about their organization.The 15th talk was from the Coalition for Pulmonary fibrosis about their organization.Between the 12th and 13th talk we had a very good buffet lunch. I hope this helps.Luke J. Nester > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi Group,> > > > > I was curious to know if anyone is planning to attend the IPF Seminar in PA on Monday 9/14/09?> > > > > AB> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2009 Report Share Posted September 21, 2009 Hi Luke, Thanks so much for the summary. I truly appreciated the information and I think others from PA did also. It seems like the group from PA is growing and maybe at some point we'll all be able to get together. Take care, Adrienne Subject: Re: IPF Seminar in PATo: Breathe-Support Date: Sunday, September 20, 2009, 9:53 PM Hi Adrienne,I got to it.The PA- IPF Advocacy Event in burg had about 100 people in attendance.There were 37 patents in attendance most of whom came with some one. There were 14 speakers and an introduction. There was no recording of the talks. They may be able to post some of the Power Point presentations. What follows is a very sort description of each talk. I am a bad note taker. The introduction stated the need for recognition and understanding of IPF. The 1st talk was about how the PA-IPF registry got started.The 2nd talk was encouragement to sign up for the PA_IPF registry. The 3rd talk was a description of were the current members of the registry are from.The 4th talk was Charolatte Saunders, an IPF lung transplant with her story.She was a very dynamic before IPF and she struggled with it until she got a transplant and was able to get back some of her energy.The 5th talk was a theory of how Pulmonary Fibrosis works. They are reasonable confident they have this figured out. A lining in the lung gets damaged and the repair effort gets off track. The 6th talk was a description of what can be done now: O2, some times drugs help, pulmonary rehab, lung transplant and there is some hope with clinical trials.The 7th talk was a description of the various O2 systems and pulmonary rehab. They recommend liquid O2 for now. The pulmonary rehab should be aerobic exercises to strengthen and tune muscles. The 8th talk was a review of the rules governing transplant eligibility and the current statistics.The 9th talk was the need to keep as health as you can. Not all setbacks are caused by IPF.Have yourself checked out it may be something else that can be fixed. It has been there observation that everyone experience with IPF is different.The 10th talk was on occupational exposures. Many kinds' of exposures were presented.It is very difficult and could backfire to try and claim an occupational exposure. They would like to have this in the state registry for research but they would need a complete occupational history on each person to be really useful.The 11th talk was on a possible role of stem cells from the blood contributing to the repair going bad in the lungs.The 12th talk was on the genetics of IPF. It appears there are many distinctive changes in the genes that are associated with PF. Having all the different markers associated with IPF could help explain how each person has a different history with IPF.They may even be able to diagnose and track it with what they are learning. They have been able to cure mice that they gave fibrosis too.The 13th talk was by Beren a former member of the state General Assembly. He told his story. His wife died of IPF in 2006. They had worked to get the PA-IPF registry. The 14th talk was from Pulmonary fibrosis Foundation about their organization.The 15th talk was from the Coalition for Pulmonary fibrosis about their organization.Between the 12th and 13th talk we had a very good buffet lunch. I hope this helps.Luke J. Nester > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi Group,> > > > > I was curious to know if anyone is planning to attend the IPF Seminar in PA on Monday 9/14/09?> > > > > AB> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 In regards to carrying o2- I was told by the representative of (Pacific Pulmonary) thats delivers my o2 not to leave them nor carry them in the trunk...so i don't. So far no accidents. Dot/42/uip10/08/Sa,Tx Subject: Re: IPF Seminar in PATo: Breathe-Support Date: Friday, September 25, 2009, 10:48 AM MB/PeggyThe key is not allowing the canisters to fly around and not allowingthem to bang together metal to metal. There are other recommendationsbut those two things are the most important.> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > > Hi Group,> > > > > > > > I was curious to know if anyone is planning to attendthe> IPF Seminar in PA on Monday 9/14/09?> > > > > > > > AB> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 Dorothy By nature the oxygen suppliers are going to be extra cautious to avoid liability. They also tell you not to cook, not to shave with an electric razor and many other things that ultimately we all use our best judgement on. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi Group, > > > > > > > > > I was curious to know if anyone is planning to attend > the > > IPF Seminar in PA on Monday 9/14/09? > > > > > > > > > AB > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2009 Report Share Posted September 26, 2009 Hi Luke i was hoping you would say the opposite about stem cells -- like stem cells replacing damaged lung tissue with good lung tissue Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: IPF Seminar in PATo: Breathe-Support Date: Thursday, September 24, 2009, 9:10 PM Hi JoyceThere were no handouts for the presentations.There ware meterials from each of the Hospitals and the two groups.Liquid O2 is safe for traveling.Gas O2 is a potential bomb.The stem cells in the blood may be contributng to the over reacting repair in the Lungs. These cells may come into the Lung and then foster the growth of the fiberous tisue that is our problem.Take care, Luke > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi Group,> > > > > > I was curious to know if anyone is planning to attend the IPF Seminar in PA on Monday 9/14/09?> > > > > > AB> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
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