Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 , As others have already said...Welcome to the "air Family" You will find all the support you need here. We share just about anything Laughs, tears, recipes, pictures!!! We don't always talk about PF...we try to live our lives...different lives than many of us expected...but We Live with PF in its many forms the best we can with each other as support. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 and Reynaud’s too!! 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 Calabrese wrote: Beth, Thank you. I have been scared for a very long time. I am seeing a pulmonologist at Hospital in Naperville, Illinois. I live in a suburb nearby named Bolingbrook. I have just been ignoring my diseases. I was diagnosed with bronchectisis first which is a disease of the Bronci and then a lung biopsy revealed IPF. My Dr. is the only one I have seen except for the Dr. at Loyola. He was the head of the lung transplant unit and he is not a very nice person. He left me feeling helpless. I had a bunch of testing done and everything came back fine. Except my weight. I couln't lose very much weight and that Dr.made me feel like I was never going to win. So I quit. I gave up. I did go to pulomonary rehab 3 times but I always fell off the wagon. What I can not figure out is why I do the things I do, knowing what I know. Maybe I will find some answers here. I just don't know what to do next. I am so happy I found this group. I really need all of you. Now I feel hopeful. Does that make any sense? From: Beth <mbmurtha (AT) yahoo (DOT) com> To: Breathe-Support Sent: Tuesday, April 21, 2009 1:24:22 PM Subject: Re: Scared & lonely , Welcome!! We're so glad you found us though I think I speak for all of us when I say we're sorry you even had reason to look for a group like this. There is no need to feel "totally embarrassed and ashamed" though. It sounds like you've been coping on your own for a long time. That can be very isolating can't it? I'm glad you found us even if it's only so that you know there are others who are fighting the same battle you are. It helps to know others in the same boat. I'm Beth, 49 living in Durham NC. I have fibrotic NSIP (non specific interstitial pneumonitis) and dermatomyositis, an auto-immune connective tissue disease. I've been on SSDI since November of 06. I get my medical care at Duke University.. I can safely say we all want to do anything we can to help. Ask any questions that come to mind. Don't feel silly or embarrassed about asking. Everyone has a learning curve. You've already been reading the messages. You might want to go back and read old messages a bit or search by keyword through the archives if there's something in particular you'd like to look for. Are you in the US? Where do you get your care for the lung disease? Tell us more about you and your situation if you feel comfortable sharing. We're all in the same boat! Once again welcome, I'm glad you are here! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Calabrese <erin_calabrese01@ yahoo.com> To: Breathe-Support@ yahoogroups. com Sent: Tuesday, April 21, 2009 3:44:22 PM Subject: Scared & lonely Hello, My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 http://www.uchospitals.edu/specialties/pulmonary/interstitial-lung/index.htmlYou should contact the U of Chicago as they are one of the best PF hospitals in the country P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04, PH 3/06, ILL yo 60REMEMBER : All of you on Prednisone'stressed' spelled backwards is 'desserts'If God brings you to it - He will bring you through it.Subject: Re: Scared & lonelyTo: Breathe-Support Date: Tuesday, April 21, 2009, 8:02 PM ... yes, I read some information from you on some of your other posts. I know nothing about the Chicago area. We live in Oregon and I love the PNW. You will gather strength as you read and write. And, you'll make friendships here too that become special. Even tho' the chances are most of us will never meet we do feel close to different people. Members do gather across the country for get togethers. It's wonderful to meet each other personally. Perhaps that will happen with you... Keep on keepin' on. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Scared & lonely Hello,My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 http://www.uchospitals.edu/specialties/pulmonary/interstitial-lung/index.htmlYou should contact the U of Chicago as they are one of the best PF hospitals in the country P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04, PH 3/06, ILL yo 60REMEMBER : All of you on Prednisone'stressed' spelled backwards is 'desserts'If God brings you to it - He will bring you through it.Subject: Re: Scared & lonelyTo: Breathe-Support Date: Tuesday, April 21, 2009, 8:02 PM ... yes, I read some information from you on some of your other posts. I know nothing about the Chicago area. We live in Oregon and I love the PNW. You will gather strength as you read and write. And, you'll make friendships here too that become special. Even tho' the chances are most of us will never meet we do feel close to different people. Members do gather across the country for get togethers. It's wonderful to meet each other personally. Perhaps that will happen with you... Keep on keepin' on. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Scared & lonely Hello,My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 Everything you write makes sense. However, there's one thing you can change that will change your world. You're letting the diagnosis and doctors run your life and in many ways ruin it. The diagnosis is fact. Doctors are, well, doctors, even if sometimes they want to play God. I suspect they said have the biopsy and they said try the imuran and prednisone and didn't really lay them out as choices to be made. I'm going to tell you one thing today. Life, with UIP/IPF can be great. I get out every day. I can do anything I want to pretty much with oxygen, sometimes lots of it. I'm taking this as the retirement I might not have gotten other ways. I've made my own medical choices based on advice and education. I chose VATS, I chose no prednisone. But mostly, I've done what needed to enjoy however much time I have. First, the time I'm still very mobile and, then, the time I am less mobile. I couldn't imagine this without my mental health counselor. Now, I already had her for other things but she's my Godsend. I think diagnoses of terminal diseases should automatically include a referral as should prednisone. Everything you're doing makes perfect sense. You're showing the typical signs of depression that come with this. Normal. Typical. However, you can overcome it. Might take a good therapist to assist you in doing so. But you can control how you live with the disease. Once you feel more in control, it won't be as overwhelming. Oh, it will still be there. But manageable. Trust me on that. By the way, I went to the University of Chicago for my second opinion. > > Beth, > Thank you. I have been scared for a very long time. I am seeing a pulmonologist at Hospital in Naperville, Illinois. I live in a suburb nearby named Bolingbrook. I have just been ignoring my diseases. I was diagnosed with bronchectisis first which is a disease of the Bronci and then a lung biopsy revealed IPF. My Dr. is the only one I have seen except for the Dr. at Loyola. He was the head of the lung transplant unit and he is not a very nice person. He left me feeling helpless. I had a bunch of testing done and everything came back fine. Except my weight. I couln't lose very much weight and that Dr.made me feel like I was never going to win. So I quit. I gave up. I did go to pulomonary rehab 3 times but I always fell off the wagon. What I can not figure out is why I do the things I do, knowing what I know. Maybe I will find some answers here. I just don't know what to do next. I am so happy I found this group. > I really need all of you. Now I feel hopeful. Does that make any sense? > > > > > > > ________________________________ > From: Beth mbmurtha@... > To: Breathe-Support > Sent: Tuesday, April 21, 2009 1:24:22 PM > Subject: Re: Scared & lonely > > > > > > , > Welcome!! We're so glad you found us though I think I speak for all of us when I say we're sorry you even had reason to look for a group like this. There is no need to feel " totally embarrassed and ashamed " though. It sounds like you've been coping on your own for a long time. That can be very isolating can't it? I'm glad you found us even if it's only so that you know there are others who are fighting the same battle you are. It helps to know others in the same boat. > > I'm Beth, 49 living in Durham NC. I have fibrotic NSIP (non specific interstitial pneumonitis) and dermatomyositis, an auto-immune connective tissue disease. I've been on SSDI since November of 06. I get my medical care at Duke University. > > I can safely say we all want to do anything we can to help. Ask any questions that come to mind. Don't feel silly or embarrassed about asking. Everyone has a learning curve. You've already been reading the messages. You might want to go back and read old messages a bit or search by keyword through the archives if there's something in particular you'd like to look for. > > Are you in the US? Where do you get your care for the lung disease? Tell us more about you and your situation if you feel comfortable sharing. We're all in the same boat! Once again welcome, I'm glad you are here! > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > ________________________________ > From: Calabrese > To: Breathe-Support@ yahoogroups. com > Sent: Tuesday, April 21, 2009 3:44:22 PM > Subject: Scared & lonely > > > Hello, > My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn.. Any who can help or want to help please let me know. Thank you. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 Everything you write makes sense. However, there's one thing you can change that will change your world. You're letting the diagnosis and doctors run your life and in many ways ruin it. The diagnosis is fact. Doctors are, well, doctors, even if sometimes they want to play God. I suspect they said have the biopsy and they said try the imuran and prednisone and didn't really lay them out as choices to be made. I'm going to tell you one thing today. Life, with UIP/IPF can be great. I get out every day. I can do anything I want to pretty much with oxygen, sometimes lots of it. I'm taking this as the retirement I might not have gotten other ways. I've made my own medical choices based on advice and education. I chose VATS, I chose no prednisone. But mostly, I've done what needed to enjoy however much time I have. First, the time I'm still very mobile and, then, the time I am less mobile. I couldn't imagine this without my mental health counselor. Now, I already had her for other things but she's my Godsend. I think diagnoses of terminal diseases should automatically include a referral as should prednisone. Everything you're doing makes perfect sense. You're showing the typical signs of depression that come with this. Normal. Typical. However, you can overcome it. Might take a good therapist to assist you in doing so. But you can control how you live with the disease. Once you feel more in control, it won't be as overwhelming. Oh, it will still be there. But manageable. Trust me on that. By the way, I went to the University of Chicago for my second opinion. > > Beth, > Thank you. I have been scared for a very long time. I am seeing a pulmonologist at Hospital in Naperville, Illinois. I live in a suburb nearby named Bolingbrook. I have just been ignoring my diseases. I was diagnosed with bronchectisis first which is a disease of the Bronci and then a lung biopsy revealed IPF. My Dr. is the only one I have seen except for the Dr. at Loyola. He was the head of the lung transplant unit and he is not a very nice person. He left me feeling helpless. I had a bunch of testing done and everything came back fine. Except my weight. I couln't lose very much weight and that Dr.made me feel like I was never going to win. So I quit. I gave up. I did go to pulomonary rehab 3 times but I always fell off the wagon. What I can not figure out is why I do the things I do, knowing what I know. Maybe I will find some answers here. I just don't know what to do next. I am so happy I found this group. > I really need all of you. Now I feel hopeful. Does that make any sense? > > > > > > > ________________________________ > From: Beth mbmurtha@... > To: Breathe-Support > Sent: Tuesday, April 21, 2009 1:24:22 PM > Subject: Re: Scared & lonely > > > > > > , > Welcome!! We're so glad you found us though I think I speak for all of us when I say we're sorry you even had reason to look for a group like this. There is no need to feel " totally embarrassed and ashamed " though. It sounds like you've been coping on your own for a long time. That can be very isolating can't it? I'm glad you found us even if it's only so that you know there are others who are fighting the same battle you are. It helps to know others in the same boat. > > I'm Beth, 49 living in Durham NC. I have fibrotic NSIP (non specific interstitial pneumonitis) and dermatomyositis, an auto-immune connective tissue disease. I've been on SSDI since November of 06. I get my medical care at Duke University. > > I can safely say we all want to do anything we can to help. Ask any questions that come to mind. Don't feel silly or embarrassed about asking. Everyone has a learning curve. You've already been reading the messages. You might want to go back and read old messages a bit or search by keyword through the archives if there's something in particular you'd like to look for. > > Are you in the US? Where do you get your care for the lung disease? Tell us more about you and your situation if you feel comfortable sharing. We're all in the same boat! Once again welcome, I'm glad you are here! > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > ________________________________ > From: Calabrese > To: Breathe-Support@ yahoogroups. com > Sent: Tuesday, April 21, 2009 3:44:22 PM > Subject: Scared & lonely > > > Hello, > My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn.. Any who can help or want to help please let me know. Thank you. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 Hi ! I am sorry that you have to join us but you are definitely in the right place. I was diagnosed when I was 43 years old and now I am 54 yrs old. I have been on oxygen 24/7 for 4 years. I do many things and try to stay active. I go to exercise at a class in the Wellness Center that is a part of the hospital where I live. I also am active as I can be at my church. But exercising is the key-you have to do it to maintain what you have. I started in this class that I am in about 3months after I was diagnosed in February, 1999. There were times when I was not there but I have tried to keep it up. Some of the people here have gone to pulmonary rehab, which is most helpful to help you learn how to exercise with IPF. Walking is also good. I also know how you feel about your lung tx doctor. I felt that way about one of the doctors at Emory in Atlanta. He was only concerned about my losing weight. He pushed me and he wanted me to hurrry up and lose it. I lost 50 pounds in 2004 when I was very sick but the past 5 years have been very hard. It is hard to lose weight. This doctor upset me so badly at every visit that I complained about him to the adminstrator of the pulmonary department and now I have another doctor that I truly adore. Yes, he does talk about losing weight and I am still trying. But he said I have ten years to do it. If you need to, change doctors. I also have a nutritionist in my exercise class and I have consulted with her many times when I went to my class. , I am glad that you are here and we are all here for you if you need us. Take care! Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl >> ,> Funnily enough I'm very familiar with Bolingbrook. Years ago my cousin and his wife lived in Bolingbrook. I have cousins also in Naperville. It is a small world isn't it? I have cousins all over the Chicago area.> You should give Leanne at the Foundation for Pulmonary Fibrosis a call. Their website is www.pulmonaryfibrosis.org. (Lots of information there if you haven't looked at it yet) I know that there is an in person support group that meets in the Chicago area. She will know dates, place and time for that. I can't begin to explain to you how wonderful it is to meet other people with this disease in person. It's an overwhelming feeling, an instantaneous fellowship of people that "get it". People who understand what you're dealing with on a daily basis. > You are not the only one who struggles with the issue of weight. It's an ongoing issue for me. I am having some success at the moment. I'm working closely with a nutritionist, gradually making small changes that I can live with for the rest of my life. I've not ever had any lasting results from following any kind of 'diet'. It works as long as I don't veer off at all but I can't live my life on a 'diet'. That's why I'm trying a different path this time. I'm losing weight...slowly...like a pound a week but at least it's moving in the right direction.> I can't say enough good things about pulmonary rehab. You might want to try it again at some point. Learning to exercise safely can make a huge difference in your quality of life.> > Again , you are not alone. Please know you are among friends here!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ________________________________> To: Breathe-Support > Sent: Tuesday, April 21, 2009 7:56:53 PM> Subject: Re: Scared & lonely> > > > > > Beth,> Thank you. I have been scared for a very long time. I am seeing a pulmonologist at Hospital in Naperville, Illinois. I live in a suburb nearby named Bolingbrook. I have just been ignoring my diseases. I was diagnosed with bronchectisis first which is a disease of the Bronci and then a lung biopsy revealed IPF. My Dr. is the only one I have seen except for the Dr. at Loyola. He was the head of the lung transplant unit and he is not a very nice person. He left me feeling helpless. I had a bunch of testing done and everything came back fine. Except my weight. I couln't lose very much weight and that Dr.made me feel like I was never going to win. So I quit. I gave up. I did go to pulomonary rehab 3 times but I always fell off the wagon. What I can not figure out is why I do the things I do, knowing what I know. Maybe I will find some answers here. I just don't know what to do next. I am so happy I found this group. > I really need all of you. Now I feel hopeful. Does that make any sense?> > > > > > > ________________________________> From: Beth mbmurtha (AT) yahoo (DOT) com>> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, April 21, 2009 1:24:22 PM> Subject: Re: Scared & lonely> > > ,> Welcome!! We're so glad you found us though I think I speak for all of us when I say we're sorry you even had reason to look for a group like this. There is no need to feel "totally embarrassed and ashamed" though. It sounds like you've been coping on your own for a long time. That can be very isolating can't it? I'm glad you found us even if it's only so that you know there are others who are fighting the same battle you are. It helps to know others in the same boat.> > I'm Beth, 49 living in Durham NC. I have fibrotic NSIP (non specific interstitial pneumonitis) and dermatomyositis, an auto-immune connective tissue disease. I've been on SSDI since November of 06. I get my medical care at Duke University..> > I can safely say we all want to do anything we can to help. Ask any questions that come to mind. Don't feel silly or embarrassed about asking. Everyone has a learning curve. You've already been reading the messages. You might want to go back and read old messages a bit or search by keyword through the archives if there's something in particular you'd like to look for. > > Are you in the US? Where do you get your care for the lung disease? Tell us more about you and your situation if you feel comfortable sharing. We're all in the same boat! Once again welcome, I'm glad you are here!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ________________________________> From: Calabrese <erin_calabrese01@ yahoo.com>> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, April 21, 2009 3:44:22 PM> Subject: Scared & lonely> > > Hello,> My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2009 Report Share Posted April 23, 2009 Beth, It is a small world! I will check out the website. Thanks for all of the info. I am thinking about weight watchers? I am a hard nut to crack. I am a very picky eater and therefore my eating choices are limited. I try new things but I don't find a lot of success. I'll have to check out a nutritionist . I'm going to the Dr. tomorrow a.m. and I have a list of questions to ask her. I am also going to get back to pulmonary therapy and see about the University of Chicago Hospital. Wish me luck. I will let you know how it turns out. To: Breathe-Support Sent: Tuesday, April 21, 2009 6:03:33 PMSubject: Re: Scared & lonely , Funnily enough I'm very familiar with Bolingbrook. Years ago my cousin and his wife lived in Bolingbrook. I have cousins also in Naperville. It is a small world isn't it? I have cousins all over the Chicago area. You should give Leanne at the Foundation for Pulmonary Fibrosis a call. Their website is www.pulmonaryfibros is.org. (Lots of information there if you haven't looked at it yet) I know that there is an in person support group that meets in the Chicago area. She will know dates, place and time for that. I can't begin to explain to you how wonderful it is to meet other people with this disease in person. It's an overwhelming feeling, an instantaneous fellowship of people that "get it". People who understand what you're dealing with on a daily basis. You are not the only one who struggles with the issue of weight. It's an ongoing issue for me. I am having some success at the moment. I'm working closely with a nutritionist, gradually making small changes that I can live with for the rest of my life. I've not ever had any lasting results from following any kind of 'diet'. It works as long as I don't veer off at all but I can't live my life on a 'diet'. That's why I'm trying a different path this time. I'm losing weight...slowly. ..like a pound a week but at least it's moving in the right direction. I can't say enough good things about pulmonary rehab. You might want to try it again at some point. Learning to exercise safely can make a huge difference in your quality of life. Again , you are not alone. Please know you are among friends here! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Calabrese <erin_calabrese01@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, April 21, 2009 7:56:53 PMSubject: Re: Scared & lonely Beth, Thank you. I have been scared for a very long time. I am seeing a pulmonologist at Hospital in Naperville, Illinois. I live in a suburb nearby named Bolingbrook. I have just been ignoring my diseases. I was diagnosed with bronchectisis first which is a disease of the Bronci and then a lung biopsy revealed IPF. My Dr. is the only one I have seen except for the Dr. at Loyola. He was the head of the lung transplant unit and he is not a very nice person. He left me feeling helpless. I had a bunch of testing done and everything came back fine. Except my weight. I couln't lose very much weight and that Dr.made me feel like I was never going to win. So I quit. I gave up. I did go to pulomonary rehab 3 times but I always fell off the wagon. What I can not figure out is why I do the things I do, knowing what I know. Maybe I will find some answers here. I just don't know what to do next. I am so happy I found this group. I really need all of you. Now I feel hopeful. Does that make any sense? From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, April 21, 2009 1:24:22 PMSubject: Re: Scared & lonely , Welcome!! We're so glad you found us though I think I speak for all of us when I say we're sorry you even had reason to look for a group like this. There is no need to feel "totally embarrassed and ashamed" though. It sounds like you've been coping on your own for a long time. That can be very isolating can't it? I'm glad you found us even if it's only so that you know there are others who are fighting the same battle you are. It helps to know others in the same boat. I'm Beth, 49 living in Durham NC. I have fibrotic NSIP (non specific interstitial pneumonitis) and dermatomyositis, an auto-immune connective tissue disease. I've been on SSDI since November of 06. I get my medical care at Duke University.. I can safely say we all want to do anything we can to help. Ask any questions that come to mind. Don't feel silly or embarrassed about asking. Everyone has a learning curve. You've already been reading the messages. You might want to go back and read old messages a bit or search by keyword through the archives if there's something in particular you'd like to look for. Are you in the US? Where do you get your care for the lung disease? Tell us more about you and your situation if you feel comfortable sharing. We're all in the same boat! Once again welcome, I'm glad you are here! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Calabrese <erin_calabrese01@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, April 21, 2009 3:44:22 PMSubject: Scared & lonely Hello,My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 , Welcome! This site has helped me and I'm sure it can help you too. I'm 42 too and living wth PF for 2 years. These are a great group of people who truely care, with great advice...You are not alone anymore... Colleen PA 42 PF 2007 To: Breathe-Support Sent: Tuesday, April 21, 2009 3:44:22 PMSubject: Scared & lonely Hello,My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 , Welcome! This site has helped me and I'm sure it can help you too. I'm 42 too and living wth PF for 2 years. These are a great group of people who truely care, with great advice...You are not alone anymore... Colleen PA 42 PF 2007 To: Breathe-Support Sent: Tuesday, April 21, 2009 3:44:22 PMSubject: Scared & lonely Hello,My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 > > , > Welcome! This site has helped me and I'm sure it can help you too. I'm 42 too and living wth PF for 2 years. These are a great group of people who truely care, with great advice...You are not alone anymore... > Colleen PA 42 > PF 2007 > > > Colleen, Thank you. Are you on O2? I am 24/7. Are you trying to put yourself on a transplant list? I am trying just started this week. I have 2 appointments next week for Pulmonary Rehab. Monday is for an evaluation and Wednesday is for a " private " work out. My pulmo Dr. is calling me with the # to the University of Chicago. I am afraid to go there. Six years ago I took all of the tests for the transplant team at Loyola and the Dr. that I saw there is the Medical Director for the University of Chicago. He was the one that freaked me out. He made me feel like I was a lost cause. Like I shouldn't even try. I left hysterical and hopelessly lost. I gave up and have had my head in the sand ever since. I hear from everyone here that the University of Chicago is one of the leading hospitals dealing with IPF or ILD. I'm trying to keep my mind on the fact that there is more than one Dr. and just because he was that way that doesn't mean they all are. I don't know maybe I should ask Beth or Bruce. If you have any info let me know if not thanks for listening. I wish you well. ,42 IPF 03, Bronchectisis 03. > > ________________________________ > From: Calabrese > To: Breathe-Support > Sent: Tuesday, April 21, 2009 3:44:22 PM > Subject: Scared & lonely > > > > > > Hello, > My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 I've seen Dr. Strek at the University of Chicago and was very pleased but it was only one time and one day. You might check with Leanne as I know she's been there and to Loyola and familiar with many of the doctors as well as the transplant units. > > > > , > > Welcome! This site has helped me and I'm sure it can help you too. I'm 42 too and living wth PF for 2 years. These are a great group of people who truely care, with great advice...You are not alone anymore... > > Colleen PA 42 > > PF 2007 > > > > > > Colleen, > Thank you. Are you on O2? I am 24/7. Are you trying to put yourself on a transplant list? I am trying just started this week. I have 2 appointments next week for Pulmonary Rehab. Monday is for an evaluation and Wednesday is for a " private " work out. My pulmo Dr. is calling me with the # to the University of Chicago. I am afraid to go there. Six years ago I took all of the tests for the transplant team at Loyola and the Dr. that I saw there is the Medical Director for the University of Chicago. He was the one that freaked me out. He made me feel like I was a lost cause. Like I shouldn't even try. I left hysterical and hopelessly lost. I gave up and have had my head in the sand ever since. I hear from everyone here that the University of Chicago is one of the leading hospitals dealing with IPF or ILD. I'm trying to keep my mind on the fact that there is more than one Dr. and just because he was that way that doesn't mean they all are. I don't know maybe I should ask Beth or Bruce. If you have any info let me know if not thanks for listening. I wish you well. > > ,42 > IPF 03, Bronchectisis 03. > > > > ________________________________ > > From: Calabrese erin_calabrese01@ > > To: Breathe-Support > > Sent: Tuesday, April 21, 2009 3:44:22 PM > > Subject: Scared & lonely > > > > > > > > > > > > Hello, > > My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 > > > > > > , > > > Welcome! This site has helped me and I'm sure it can help you too. > I'm 42 too and living wth PF for 2 years. These are a great group of > people who truely care, with great advice...You are not alone anymore... > > > Colleen PA 42 > > > PF 2007 > > > > > > > > > Colleen, > > Thank you. Are you on O2? I am 24/7. Are you trying to put yourself > on a transplant list? I am trying just started this week. I have 2 > appointments next week for Pulmonary Rehab. Monday is for an evaluation > and Wednesday is for a " private " work out. My pulmo Dr. is calling me > with the # to the University of Chicago. I am afraid to go there. Six > years ago I took all of the tests for the transplant team at Loyola and > the Dr. that I saw there is the Medical Director for the University of > Chicago. He was the one that freaked me out. He made me feel like I > was a lost cause. Like I shouldn't even try. I left hysterical and > hopelessly lost. I gave up and have had my head in the sand ever since. > I hear from everyone here that the University of Chicago is one of the > leading hospitals dealing with IPF or ILD. I'm trying to keep my mind on > the fact that there is more than one Dr. and just because he was that > way that doesn't mean they all are. I don't know maybe I should ask > Beth or Bruce. If you have any info let me know if not thanks for > listening. I wish you well. > > > > ,42 > > IPF 03, Bronchectisis 03. > > > > > > ________________________________ > > > From: Calabrese erin_calabrese01@ > > > To: Breathe-Support > > > Sent: Tuesday, April 21, 2009 3:44:22 PM > > > Subject: Scared & lonely > > > > > > > > > > > > > > > > > > Hello, > > > My name is . I'm 42 and I have been living with IPF and > Bronchectisis for 6 years. I am blown away buy the e-mails I have been > reading and I feel totally embarrassed and ashamed. I have been hiding > my head in the sand. I never knew that sites like this existed until > yesterday when I googled IPF. I would like to talk to people who > understand IPF and I am seeing that I have much to learn. Any who can > help or want to help please let me know. Thank you. > > > > > > > > > Bruce, Thank you. Am I doing this right? Responding I mean. I type at the bottom of the previous message? I'm not the sharpest tack in the box but I can learn.lol Have a good night . Take care, 42, IPF 03, bronchiectsis 03. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 > > > > > > , > > > Welcome! This site has helped me and I'm sure it can help you too. > I'm 42 too and living wth PF for 2 years. These are a great group of > people who truely care, with great advice...You are not alone anymore... > > > Colleen PA 42 > > > PF 2007 > > > > > > > > > Colleen, > > Thank you. Are you on O2? I am 24/7. Are you trying to put yourself > on a transplant list? I am trying just started this week. I have 2 > appointments next week for Pulmonary Rehab. Monday is for an evaluation > and Wednesday is for a " private " work out. My pulmo Dr. is calling me > with the # to the University of Chicago. I am afraid to go there. Six > years ago I took all of the tests for the transplant team at Loyola and > the Dr. that I saw there is the Medical Director for the University of > Chicago. He was the one that freaked me out. He made me feel like I > was a lost cause. Like I shouldn't even try. I left hysterical and > hopelessly lost. I gave up and have had my head in the sand ever since. > I hear from everyone here that the University of Chicago is one of the > leading hospitals dealing with IPF or ILD. I'm trying to keep my mind on > the fact that there is more than one Dr. and just because he was that > way that doesn't mean they all are. I don't know maybe I should ask > Beth or Bruce. If you have any info let me know if not thanks for > listening. I wish you well. > > > > ,42 > > IPF 03, Bronchectisis 03. > > > > > > ________________________________ > > > From: Calabrese erin_calabrese01@ > > > To: Breathe-Support > > > Sent: Tuesday, April 21, 2009 3:44:22 PM > > > Subject: Scared & lonely > > > > > > > > > > > > > > > > > > Hello, > > > My name is . I'm 42 and I have been living with IPF and > Bronchectisis for 6 years. I am blown away buy the e-mails I have been > reading and I feel totally embarrassed and ashamed. I have been hiding > my head in the sand. I never knew that sites like this existed until > yesterday when I googled IPF. I would like to talk to people who > understand IPF and I am seeing that I have much to learn. Any who can > help or want to help please let me know. Thank you. > > > > > > > > > Bruce, Thank you. Am I doing this right? Responding I mean. I type at the bottom of the previous message? I'm not the sharpest tack in the box but I can learn.lol Have a good night . Take care, 42, IPF 03, bronchiectsis 03. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 Actually most of us respond at the top of the message. That way it's in chronological order, newest to oldest, and also easier to find the response. > > > > > > > > , > > > > Welcome! This site has helped me and I'm sure it can help you too. > > I'm 42 too and living wth PF for 2 years. These are a great group of > > people who truely care, with great advice...You are not alone anymore... > > > > Colleen PA 42 > > > > PF 2007 > > > > > > > > > > > > Colleen, > > > Thank you. Are you on O2? I am 24/7. Are you trying to put yourself > > on a transplant list? I am trying just started this week. I have 2 > > appointments next week for Pulmonary Rehab. Monday is for an evaluation > > and Wednesday is for a " private " work out. My pulmo Dr. is calling me > > with the # to the University of Chicago. I am afraid to go there. Six > > years ago I took all of the tests for the transplant team at Loyola and > > the Dr. that I saw there is the Medical Director for the University of > > Chicago. He was the one that freaked me out. He made me feel like I > > was a lost cause. Like I shouldn't even try. I left hysterical and > > hopelessly lost. I gave up and have had my head in the sand ever since. > > I hear from everyone here that the University of Chicago is one of the > > leading hospitals dealing with IPF or ILD. I'm trying to keep my mind on > > the fact that there is more than one Dr. and just because he was that > > way that doesn't mean they all are. I don't know maybe I should ask > > Beth or Bruce. If you have any info let me know if not thanks for > > listening. I wish you well. > > > > > > ,42 > > > IPF 03, Bronchectisis 03. > > > > > > > > ________________________________ > > > > From: Calabrese erin_calabrese01@ > > > > To: Breathe-Support > > > > Sent: Tuesday, April 21, 2009 3:44:22 PM > > > > Subject: Scared & lonely > > > > > > > > > > > > > > > > > > > > > > > > Hello, > > > > My name is . I'm 42 and I have been living with IPF and > > Bronchectisis for 6 years. I am blown away buy the e-mails I have been > > reading and I feel totally embarrassed and ashamed. I have been hiding > > my head in the sand. I never knew that sites like this existed until > > yesterday when I googled IPF. I would like to talk to people who > > understand IPF and I am seeing that I have much to learn. Any who can > > help or want to help please let me know. Thank you. > > > > > > > > > > > > > > Bruce, > Thank you. Am I doing this right? Responding I mean. I type at the bottom of the previous message? I'm not the sharpest tack in the box but I can learn.lol Have a good night . Take care, > > 42, > IPF 03, bronchiectsis 03. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2009 Report Share Posted April 28, 2009 Actually most of us respond at the top of the message. That way it's in chronological order, newest to oldest, and also easier to find the response. > > > > > > > > , > > > > Welcome! This site has helped me and I'm sure it can help you too. > > I'm 42 too and living wth PF for 2 years. These are a great group of > > people who truely care, with great advice...You are not alone anymore... > > > > Colleen PA 42 > > > > PF 2007 > > > > > > > > > > > > Colleen, > > > Thank you. Are you on O2? I am 24/7. Are you trying to put yourself > > on a transplant list? I am trying just started this week. I have 2 > > appointments next week for Pulmonary Rehab. Monday is for an evaluation > > and Wednesday is for a " private " work out. My pulmo Dr. is calling me > > with the # to the University of Chicago. I am afraid to go there. Six > > years ago I took all of the tests for the transplant team at Loyola and > > the Dr. that I saw there is the Medical Director for the University of > > Chicago. He was the one that freaked me out. He made me feel like I > > was a lost cause. Like I shouldn't even try. I left hysterical and > > hopelessly lost. I gave up and have had my head in the sand ever since. > > I hear from everyone here that the University of Chicago is one of the > > leading hospitals dealing with IPF or ILD. I'm trying to keep my mind on > > the fact that there is more than one Dr. and just because he was that > > way that doesn't mean they all are. I don't know maybe I should ask > > Beth or Bruce. If you have any info let me know if not thanks for > > listening. I wish you well. > > > > > > ,42 > > > IPF 03, Bronchectisis 03. > > > > > > > > ________________________________ > > > > From: Calabrese erin_calabrese01@ > > > > To: Breathe-Support > > > > Sent: Tuesday, April 21, 2009 3:44:22 PM > > > > Subject: Scared & lonely > > > > > > > > > > > > > > > > > > > > > > > > Hello, > > > > My name is . I'm 42 and I have been living with IPF and > > Bronchectisis for 6 years. I am blown away buy the e-mails I have been > > reading and I feel totally embarrassed and ashamed. I have been hiding > > my head in the sand. I never knew that sites like this existed until > > yesterday when I googled IPF. I would like to talk to people who > > understand IPF and I am seeing that I have much to learn. Any who can > > help or want to help please let me know. Thank you. > > > > > > > > > > > > > > Bruce, > Thank you. Am I doing this right? Responding I mean. I type at the bottom of the previous message? I'm not the sharpest tack in the box but I can learn.lol Have a good night . Take care, > > 42, > IPF 03, bronchiectsis 03. > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.