Guest guest Posted March 14, 2007 Report Share Posted March 14, 2007 ...I just finished your post. I'm sorry you progressed so quickly. It's hard to cope with of course. I personally am a strong advocate for Hospice, at the right time. I hope this will give you comfort! It is so hard living alone...do you have family and/or friends close by that give you help and support?God Bless! "Don't worry about tomorrow, God is already there". Sher ipf 3-06, OR. On Wed Mar 14 13:18 , 'lab7377' sent: My name is . I was diagnosed July 2005 with IPF. Up until this past fall I was managing with the disease pretty well. However, I have taken a great set back and am now in end stage lung disease. I have been moved to 10 litres of O2, 6 at rest. I am having a very difficult time right now breathing. I will be doing a hospice consult in a few days. I haven't given up but things are very difficult for me because I do live alone. Although I have a tremendous support group with my family and friends it is difficult for me to do things like make the bed, vaccuum, take out the trash. My saturation level drops dramatically when I move around. I have been in constant contact with The Caring Voice Coalition since August 2005 ( I think). I was encouraged to contact on line support by LeeAnn and Lynley . I cannot say enough about Caring Voice. They have been there to listen for a long time. They have helped me financially, got me into touch with organizations in my home town that have also been a tremendous source of support. I am not on line everyday because of so much going on in my life but I hope to talk to some of you soon. Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2007 Report Share Posted March 14, 2007 Hey Diane, It really makes me sad that alot of physicians take the diagnosis of IPF so lightly. Mainly I think it is because they are not educated about the disease. There are studies out there you may qualify for and there are ways to get help paying for the medicines that are given with those studies. I urge you to contact Lynley at The Caring Voice Coalition. She has been a great source of inspiration, support and a great friend. She can get help you with some of the red tape you will run across. Some people respond very well to prednisone theraphy. Are you on oxygen? What is your litre flow? I really urge you to contact Caring voice Coalition. The toll free # for this organization is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2007 Report Share Posted March 14, 2007 Yes, Most of my brothers and sisters live within a few mile of my home. Mainly my sisters are my source of encouragement and help. Also I have a lot of very good friends who come to my aid like you would never think. My children live out of town. My mother is in a nursing home. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2007 Report Share Posted March 14, 2007 - Welcome to the group, but sorry you are already at endstage. My doctors haven't used that termonology with me. I think I was misdiagnosed over the last several years and since Feb. 2006 I really have had a rough time, but didn't get put on oxygen until 26 Jan when I failed the 6 min. walk test after 2 min. Myk pulmonary doctor has referred me to a lung transplant team in Indy & I received a call today that my insurance has approved the transplant evaluation already. However, I am in the process of changing my insurance coverage over so Medicare is primary and a supplement will be secondary since I am not on sick leave. Although I am only on 3 LPM I really understand what you are going through as I also live alone and my 3 sons all live in different states. Hope you can make the phone conference tomorrow. Love and Aloha, Judy - IPF Nov 06 - Illinois > > My name is . I was diagnosed July 2005 with IPF. Up until this > past fall I was managing with the disease pretty well. However, I have > taken a great set back and am now in end stage lung disease. I have > been moved to 10 litres of O2, 6 at rest. I am having a very difficult > time right now breathing. I will be doing a hospice consult in a few > days. I haven't given up but things are very difficult for me because I > do live alone. Although I have a tremendous support group with my > family and friends it is difficult for me to do things like make the > bed, vaccuum, take out the trash. My saturation level drops > dramatically when I move around. I have been in constant contact with > The Caring Voice Coalition since August 2005 ( I think). I was > encouraged to contact on line support by LeeAnn and Lynley . I > cannot say enough about Caring Voice. They have been there to listen > for a long time. They have helped me financially, got me into touch > with organizations in my home town that have also been a tremendous > source of support. I am not on line everyday because of so much going > on in my life but I hope to talk to some of you soon. Take care. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2007 Report Share Posted March 14, 2007 Dear cbayjpw: Good luck with the lung transplant evaluation. Looking forward to phone conference. cbayjpw wrote: - Welcome to the group, but sorry you are already at endstage. My doctors haven't used that termonology with me. I think I was misdiagnosed over the last several years and since Feb. 2006 I really have had a rough time, but didn't get put on oxygen until 26 Jan when I failed the 6 min. walk test after 2 min. Myk pulmonary doctor has referred me to a lung transplant team in Indy & I received a call today that my insurance has approved the transplant evaluation already. However, I am in the process of changing my insurance coverage over so Medicare is primary and a supplement will be secondary since I am not on sick leave. Although I am only on 3 LPM I really understand what you are going through as I also live alone and my 3 sons all live in different states. Hope you can make the phone conference tomorrow.Love and Aloha,Judy - IPF Nov 06 - Illinois>> My name is . I was diagnosed July 2005 with IPF. Up until this > past fall I was managing with the disease pretty well. However, I have > taken a great set back and am now in end stage lung disease. I have > been moved to 10 litres of O2, 6 at rest. I am having a very difficult > time right now breathing. I will be doing a hospice consult in a few > days. I haven't given up but things are very difficult for me because I > do live alone. Although I have a tremendous support group with my > family and friends it is difficult for me to do things like make the > bed, vaccuum, take out the trash. My saturation level drops > dramatically when I move around. I have been in constant contact with > The Caring Voice Coalition since August 2005 ( I think). I was > encouraged to contact on line support by LeeAnn and Lynley . I > cannot say enough about Caring Voice. They have been there to listen > for a long time. They have helped me financially, got me into touch > with organizations in my home town that have also been a tremendous > source of support. I am not on line everyday because of so much going > on in my life but I hope to talk to some of you soon. Take care.> > TV dinner still cooling?Check out "Tonight's Picks" on Yahoo! TV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2007 Report Share Posted March 14, 2007 Hi , I don't recall your profile but I want you to know I will be praying for you. This monster has so changed our lives. It is a wonderful thing to receive help when it is needed. " Take care of you. " Love and Prayers, Peggy 9/04 ipf Florida " Worry looks around, Sorry looks back, Faith looks up " My name is . I was diagnosed July 2005 with IPF. Up until this past fall I was managing with the disease pretty well. However, I have taken a great set back and am now in end stage lung disease. I have been moved to 10 litres of O2, 6 at rest. I am having a very difficult time right now breathing. I will be doing a hospice consult in a few days. I haven't given up but things are very difficult for me because I do live alone. Although I have a tremendous support group with my family and friends it is difficult for me to do things like make the bed, vaccuum, take out the trash. My saturation level drops dramatically when I move around. I have been in constant contact with The Caring Voice Coalition since August 2005 ( I think). I was encouraged to contact on line support by LeeAnn and Lynley . I cannot say enough about Caring Voice. They have been there to listen for a long time. They have helped me financially, got me into touch with organizations in my home town that have also been a tremendous source of support. I am not on line everyday because of so much going on in my life but I hope to talk to some of you soon. Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2007 Report Share Posted March 14, 2007 ...I'm relieved to hear you are not literally 'alone'! I hope you will let these people who love you help you. God Bless. "Don't worry about tomorrow, God is already there". Sher ipf 3-06, OR. On Wed Mar 14 13:55 , 'lab7377' sent: Yes, Most of my brothers and sisters live within a few mile of my home. Mainly my sisters are my source of encouragement and help. Also I have a lot of very good friends who come to my aid like you would never think. My children live out of town. My mother is in a nursing home. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2007 Report Share Posted March 14, 2007 Hello , Welcome to our group. I'm sorry that you are so sick. This monster of a disease is so devastating to our lives. This is certainly not something that you want to face alone. Finding this group has been such a blessing to me. When no one else understands or has time to listen, someone is always here. We cheer for each other and pray for each other. Please let us get to know you. Hugs, Joyce PF/Lupus 1997 Bronchiectasis 2004 Indiana >> My name is . I was diagnosed July 2005 with IPF. Up until this > past fall I was managing with the disease pretty well. However, I have > taken a great set back and am now in end stage lung disease. I have > been moved to 10 litres of O2, 6 at rest. I am having a very difficult > time right now breathing. I will be doing a hospice consult in a few > days. I haven't given up but things are very difficult for me because I > do live alone. Although I have a tremendous support group with my > family and friends it is difficult for me to do things like make the > bed, vaccuum, take out the trash. My saturation level drops > dramatically when I move around. I have been in constant contact with > The Caring Voice Coalition since August 2005 ( I think). I was > encouraged to contact on line support by LeeAnn and Lynley . I > cannot say enough about Caring Voice. They have been there to listen > for a long time. They have helped me financially, got me into touch > with organizations in my home town that have also been a tremendous > source of support. I am not on line everyday because of so much going > on in my life but I hope to talk to some of you soon. Take care.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2007 Report Share Posted March 14, 2007 Hi all.Well I went on Hospice home health careTues.Ifigured why not take advantage of the services available.I am eligible as long as i have IPF.They will pay for my meds on this program.I think I am going to be around a long while yet.As far as Viagra goes,I want to tell my Pulmo about it,and get on it as soon as possible.Doyou think we'll have to wait until these studies are doneto geton this drug?All these other experimental drugs,like Actimune,and Perfenidone have turned out to not work.This is the first ray of hope that has come down the line in a long time.What can we do to get things moving on this issue?Mark L.Odegard To: Breathe-Support From: janne5303@...Date: Wed, 14 Mar 2007 23:19:30 +0000Subject: Re: Hello everyone! Hello , Welcome to our group. I'm sorry that you are so sick. This monster of a disease is so devastating to our lives. This is certainly not something that you want to face alone. Finding this group has been such a blessing to me. When no one else understands or has time to listen, someone is always here. We cheer for each other and pray for each other. Please let us get to know you. Hugs, Joyce PF/Lupus 1997 Bronchiectasis 2004 Indiana >> My name is . I was diagnosed July 2005 with IPF. Up until this > past fall I was managing with the disease pretty well. However, I have > taken a great set back and am now in end stage lung disease. I have > been moved to 10 litres of O2, 6 at rest. I am having a very difficult > time right now breathing. I will be doing a hospice consult in a few > days. I haven't given up but things are very difficult for me because I > do live alone. Although I have a tremendous support group with my > family and friends it is difficult for me to do things like make the > bed, vaccuum, take out the trash. My saturation level drops > dramatically when I move around. I have been in constant contact with > The Caring Voice Coalition since August 2005 ( I think). I was > encouraged to contact on line support by LeeAnn and Lynley . I > cannot say enough about Caring Voice. They have been there to listen > for a long time. They have helped me financially, got me into touch > with organizations in my home town that have also been a tremendous > source of support. I am not on line everyday because of so much going > on in my life but I hope to talk to some of you soon. Take care.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2007 Report Share Posted March 14, 2007 I guess all we can do is talk to our Drs.! "Don't worry about tomorrow, God is already there". Sher ipf 3-06, OR. On Wed Mar 14 17:18 , Mark Odegard sent: Hi all.Well I went on Hospice home health careTues.Ifigured why not take advantage of the services available.I am eligible as long as i have IPF.They will pay for my meds on this program.I think I am going to be around a long while yet.As far as Viagra goes,I want to tell my Pulmo about it,and get on it as soon as possible.Doyou think we'll have to wait until these studies are doneto geton this drug?All these other experimental drugs,like Actimune,and Perfenidone have turned out to not work.This is the first ray of hope that has come down the line in a long time.What can we do to get things moving on this issue? Mark L.Odegard To: Breathe-Support From: janne5303 Date: Wed, 14 Mar 2007 23:19:30 +0000 Subject: Re: Hello everyone! Hello , Welcome to our group. I'm sorry that you are so sick. This monster of a disease is so devastating to our lives. This is certainly not something that you want to face alone. Finding this group has been such a blessing to me. When no one else understands or has time to listen, someone is always here. We cheer for each other and pray for each other. Please let us get to know you. Hugs, Joyce PF/Lupus 1997 Bronchiectasis 2004 Indiana > > My name is . I was diagnosed July 2005 with IPF. Up until this > past fall I was managing with the disease pretty well. However, I have > taken a great set back and am now in end stage lung disease. I have > been moved to 10 litres of O2, 6 at rest. I am having a very difficult > time right now breathing. I will be doing a hospice consult in a few > days. I haven't given up but things are very difficult for me because I > do live alone. Although I have a tremendous support group with my > family and friends it is difficult for me to do things like make the > bed, vaccuum, take out the trash. My saturation level drops > dramatically when I move around. I have been in constant contact with > The Caring Voice Coalition since August 2005 ( I think). I was > encouraged to contact on line support by LeeAnn and Lynley . I > cannot say enough about Caring Voice. They have been there to listen > for a long time. They have helped me financially, got me into touch > with organizations in my home town that have also been a tremendous > source of support. I am not on line everyday because of so much going > on in my life but I hope to talk to some of you soon. Take care. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2007 Report Share Posted March 14, 2007 Hi Mark, Do you mind if I ask exactly what Hospice does for you? How did you get signed up with them? I am sorry but I think I missed some posts while my computer was being fixed. What is happening with you? I am praying for you. God Bless You Mark, " Greater is He " Love and Prayers, Peggy 9/04 ipf Florida " Worry looks around, Sorry looks back, Faith looks up " Hi all.Well I went on Hospice home health careTues.Ifigured why not take advantage of the services available.I am eligible as long as i have IPF.They will pay for my meds on this program.I think I am going to be around a long while yet.As far as Viagra goes,I want to tell my Pulmo about it,and get on it as soon as possible.Doyou think we'll have to wait until these studies are doneto geton this drug?All these other experimental drugs,like Actimune,and Perfenidone have turned out to not work.This is the first ray of hope that has come down the line in a long time.What can we do to get things moving on this issue? Mark L.Odegard To: Breathe-Support From: janne5303@... Date: Wed, 14 Mar 2007 23:19:30 +0000 Subject: Re: Hello everyone! Hello , Welcome to our group. I'm sorry that you are so sick. This monster of a disease is so devastating to our lives. This is certainly not something that you want to face alone. Finding this group has been such a blessing to me. When no one else understands or has time to listen, someone is always here. We cheer for each other and pray for each other. Please let us get to know you. Hugs, Joyce PF/Lupus 1997 Bronchiectasis 2004 Indiana > > My name is . I was diagnosed July 2005 with IPF. Up until this > past fall I was managing with the disease pretty well. However, I have > taken a great set back and am now in end stage lung disease. I have > been moved to 10 litres of O2, 6 at rest. I am having a very difficult > time right now breathing. I will be doing a hospice consult in a few > days. I haven't given up but things are very difficult for me because I > do live alone. Although I have a tremendous support group with my > family and friends it is difficult for me to do things like make the > bed, vaccuum, take out the trash. My saturation level drops > dramatically when I move around. I have been in constant contact with > The Caring Voice Coalition since August 2005 ( I think). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2007 Report Share Posted March 15, 2007 Since we are both now on Hospice....I am curious as to what Hospice service you are using. Nany Re: Hello everyone! Hello , Welcome to our group. I'm sorry that you are so sick. This monster of a disease is so devastating to our lives. This is certainly not something that you want to face alone. Finding this group has been such a blessing to me. When no one else understands or has time to listen, someone is always here. We cheer for each other and pray for each other. Please let us get to know you. Hugs, Joyce PF/Lupus 1997 Bronchiectasis 2004 Indiana >> My name is . I was diagnosed July 2005 with IPF. Up until this > past fall I was managing with the disease pretty well. However, I have > taken a great set back and am now in end stage lung disease. I have > been moved to 10 litres of O2, 6 at rest. I am having a very difficult > time right now breathing. I will be doing a hospice consult in a few > days. I haven't given up but things are very difficult for me because I > do live alone. Although I have a tremendous support group with my > family and friends it is difficult for me to do things like make the > bed, vaccuum, take out the trash. My saturation level drops > dramatically when I move around. I have been in constant contact with > The Caring Voice Coalition since August 2005 ( I think). I was > encouraged to contact on line support by LeeAnn and Lynley . I > cannot say enough about Caring Voice. They have been there to listen > for a long time. They have helped me financially, got me into touch > with organizations in my home town that have also been a tremendous > source of support. I am not on line everyday because of so much going > on in my life but I hope to talk to some of you soon. Take care.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2007 Report Share Posted March 15, 2007 I am using Fairview Hospice & homecare service. they are part of the university of Minnesota medical system.THeir goal is to keep you at home & independentb as long as possible.I hope you are getting good service from your provider.The people I have dealt with are nice people,and that helps alot.Mark L.Odegard To: Breathe-Support From: nctulip@...Date: Thu, 15 Mar 2007 09:57:58 -0700Subject: Re: Re: Hello everyone! Since we are both now on Hospice....I am curious as to what Hospice service you are using. Nany Re: Hello everyone! Hello , Welcome to our group. I'm sorry that you are so sick. This monster of a disease is so devastating to our lives. This is certainly not something that you want to face alone. Finding this group has been such a blessing to me. When no one else understands or has time to listen, someone is always here. We cheer for each other and pray for each other. Please let us get to know you. Hugs, Joyce PF/Lupus 1997 Bronchiectasis 2004 Indiana >> My name is . I was diagnosed July 2005 with IPF. Up until this > past fall I was managing with the disease pretty well. However, I have > taken a great set back and am now in end stage lung disease. I have > been moved to 10 litres of O2, 6 at rest. I am having a very difficult > time right now breathing. I will be doing a hospice consult in a few > days. I haven't given up but things are very difficult for me because I > do live alone. Although I have a tremendous support group with my > family and friends it is difficult for me to do things like make the > bed, vaccuum, take out the trash. My saturation level drops > dramatically when I move around. I have been in constant contact with > The Caring Voice Coalition since August 2005 ( I think). I was > encouraged to contact on line support by LeeAnn and Lynley . I > cannot say enough about Caring Voice. They have been there to listen > for a long time. They have helped me financially, got me into touch > with organizations in my home town that have also been a tremendous > source of support. I am not on line everyday because of so much going > on in my life but I hope to talk to some of you soon. Take care.> > Quote Link to comment Share on other sites More sharing options...
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