Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Welcome! Just wanted to add my 2 cents and welcome you to Breathe Support. As we always say, I'm sorry you had reason to look for us but since you did I'm glad you found us. My name is Beth, I am 49 and live in Durham NC. I was diagnosed with pulmonary fibrosis in June of 2006 and have been learning to live with it ever since. Continue asking questions, getting second, third etc opinions. Keep copies of all your records so that you can keep track of everything yourself. Don't depend on the doctors to keep track of your records and all your test results. You have to advocate for yourself. Your son being so involved will be a tremendous help. In the beginning I took one of my sisters with me to some of my doctors appointments, she'd take notes and since my sister Amy is a physician she also thought of questions that I didn't. If your doctor hasn't suggested it ask him/her about pulmonary rehab. The rehab I went to changed my life and helped me in a HUGE way. I learned about living with lung disease and how to live and exercise safely with my compromised lungs. So hang around, ask questions and make friends. I've been part of this group for over 2 and a half years. I despise this disease but I can't deny the blessings it has brought into my life. Of those blessings this group is the brightest! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 hi my name is Marge I am 63 and I was told in April I have pulmonary fibrosis can you tell me more about this rehab? I live in New Jersey and I have found I had to increase my oxygen due to it was dropping to 70 just walking to the bath room I am so scared , has your breathing gotten worse? are you on prenisone? I am and when I lowered the dose my musles in my legs and arms decreased so bad I fell on the floor and coiuldn't get up did you have any trouble with muscles weakness? will be waiting to hear from you thank you Marge To: Breathe-Support From: mbmurtha@...Date: Mon, 5 Jan 2009 13:37:05 -0800Subject: Sandy Welcome! Just wanted to add my 2 cents and welcome you to Breathe Support. As we always say, I'm sorry you had reason to look for us but since you did I'm glad you found us. My name is Beth, I am 49 and live in Durham NC. I was diagnosed with pulmonary fibrosis in June of 2006 and have been learning to live with it ever since. Continue asking questions, getting second, third etc opinions. Keep copies of all your records so that you can keep track of everything yourself. Don't depend on the doctors to keep track of your records and all your test results. You have to advocate for yourself. Your son being so involved will be a tremendous help. In the beginning I took one of my sisters with me to some of my doctors appointments, she'd take notes and since my sister Amy is a physician she also thought of questions that I didn't. If your doctor hasn't suggested it ask him/her about pulmonary rehab. The rehab I went to changed my life and helped me in a HUGE way. I learned about living with lung disease and how to live and exercise safely with my compromised lungs. So hang around, ask questions and make friends. I've been part of this group for over 2 and a half years. I despise this disease but I can't deny the blessings it has brought into my life. Of those blessings this group is the brightest! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Dear Marge, First of all I'm so sorry to hear how you are struggling. This disease is very frightening, when I was first diagnosed back in 2006 I never imagined living long enough to see 2009 and yet here I am. Where in New Jersey are you? I used to live right over the northern Bergen County line in NY. I went to the pulmonary rehab at Helen Hospital in Haverstraw NY. Most good sized hospitals will have a pulmonary rehab program. I would encourage you to ask your doctor about it. It's worth asking about and can help tremendously. I was on prednisone from June of 06 through late February of 07. I've been off of it since then and I've stayed pretty stable. But there really is no use in comparing because if there's one thing I've learned it's how different we all are. We all respond to our diseases and our medications and activity differently. The trick is to find what works for us and do that. One thing I can say for sure and that's to use enough oxygen to keep your sats above 90. Don't let it go down to 72 if you can help it. Mine hasn't done that in a long time but it happened to me yesterday and it's very scary and feels BAD. It was a brief episode and I recovered very fast but while it was down that low it felt like I was dying. Don't be afraid to use what oxygen you need to to prevent that from happening. Please feel free to ask whatever questions you have. That's what we're here for! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: breathe-support Sent: Monday, January 5, 2009 4:54:18 PMSubject: RE: Sandy hi my name is Marge I am 63 and I was told in April I have pulmonary fibrosis can you tell me more about this rehab? I live in New Jersey and I have found I had to increase my oxygen due to it was dropping to 70 just walking to the bath room I am so scared , has your breathing gotten worse? are you on prenisone? I am and when I lowered the dose my musles in my legs and arms decreased so bad I fell on the floor and coiuldn't get up did you have any trouble with muscles weakness? will be waiting to hear from you thank you Marge To: Breathe-Support@ yahoogroups. comFrom: mbmurtha (AT) yahoo (DOT) comDate: Mon, 5 Jan 2009 13:37:05 -0800Subject: Sandy Welcome! Just wanted to add my 2 cents and welcome you to Breathe Support. As we always say, I'm sorry you had reason to look for us but since you did I'm glad you found us. My name is Beth, I am 49 and live in Durham NC. I was diagnosed with pulmonary fibrosis in June of 2006 and have been learning to live with it ever since. Continue asking questions, getting second, third etc opinions. Keep copies of all your records so that you can keep track of everything yourself. Don't depend on the doctors to keep track of your records and all your test results. You have to advocate for yourself. Your son being so involved will be a tremendous help. In the beginning I took one of my sisters with me to some of my doctors appointments, she'd take notes and since my sister Amy is a physician she also thought of questions that I didn't. If your doctor hasn't suggested it ask him/her about pulmonary rehab. The rehab I went to changed my life and helped me in a HUGE way. I learned about living with lung disease and how to live and exercise safely with my compromised lungs. So hang around, ask questions and make friends. I've been part of this group for over 2 and a half years. I despise this disease but I can't deny the blessings it has brought into my life. Of those blessings this group is the brightest! Beth in North CarolinaModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Dear Marge, First of all I'm so sorry to hear how you are struggling. This disease is very frightening, when I was first diagnosed back in 2006 I never imagined living long enough to see 2009 and yet here I am. Where in New Jersey are you? I used to live right over the northern Bergen County line in NY. I went to the pulmonary rehab at Helen Hospital in Haverstraw NY. Most good sized hospitals will have a pulmonary rehab program. I would encourage you to ask your doctor about it. It's worth asking about and can help tremendously. I was on prednisone from June of 06 through late February of 07. I've been off of it since then and I've stayed pretty stable. But there really is no use in comparing because if there's one thing I've learned it's how different we all are. We all respond to our diseases and our medications and activity differently. The trick is to find what works for us and do that. One thing I can say for sure and that's to use enough oxygen to keep your sats above 90. Don't let it go down to 72 if you can help it. Mine hasn't done that in a long time but it happened to me yesterday and it's very scary and feels BAD. It was a brief episode and I recovered very fast but while it was down that low it felt like I was dying. Don't be afraid to use what oxygen you need to to prevent that from happening. Please feel free to ask whatever questions you have. That's what we're here for! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: breathe-support Sent: Monday, January 5, 2009 4:54:18 PMSubject: RE: Sandy hi my name is Marge I am 63 and I was told in April I have pulmonary fibrosis can you tell me more about this rehab? I live in New Jersey and I have found I had to increase my oxygen due to it was dropping to 70 just walking to the bath room I am so scared , has your breathing gotten worse? are you on prenisone? I am and when I lowered the dose my musles in my legs and arms decreased so bad I fell on the floor and coiuldn't get up did you have any trouble with muscles weakness? will be waiting to hear from you thank you Marge To: Breathe-Support@ yahoogroups. comFrom: mbmurtha (AT) yahoo (DOT) comDate: Mon, 5 Jan 2009 13:37:05 -0800Subject: Sandy Welcome! Just wanted to add my 2 cents and welcome you to Breathe Support. As we always say, I'm sorry you had reason to look for us but since you did I'm glad you found us. My name is Beth, I am 49 and live in Durham NC. I was diagnosed with pulmonary fibrosis in June of 2006 and have been learning to live with it ever since. Continue asking questions, getting second, third etc opinions. Keep copies of all your records so that you can keep track of everything yourself. Don't depend on the doctors to keep track of your records and all your test results. You have to advocate for yourself. Your son being so involved will be a tremendous help. In the beginning I took one of my sisters with me to some of my doctors appointments, she'd take notes and since my sister Amy is a physician she also thought of questions that I didn't. If your doctor hasn't suggested it ask him/her about pulmonary rehab. The rehab I went to changed my life and helped me in a HUGE way. I learned about living with lung disease and how to live and exercise safely with my compromised lungs. So hang around, ask questions and make friends. I've been part of this group for over 2 and a half years. I despise this disease but I can't deny the blessings it has brought into my life. Of those blessings this group is the brightest! Beth in North CarolinaModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 I have a question....I know the Drs. want you to be under a certain weight before doing a transplant and even getting on the list. Does anyone know what would be concidered too heavy ? Thanks, Miranda.... IPF 3/05 > > Welcome! Just wanted to add my 2 cents and welcome you to Breathe Support. As we always say, I'm sorry you had reason to look for us but since you did I'm glad you found us. My name is Beth, I am 49 and live in Durham NC. I was diagnosed with pulmonary fibrosis in June of 2006 and have been learning to live with it ever since. > Continue asking questions, getting second, third etc opinions. Keep copies of all your records so that you can keep track of everything yourself. Don't depend on the doctors to keep track of your records and all your test results. You have to advocate for yourself. Your son being so involved will be a tremendous help. In the beginning I took one of my sisters with me to some of my doctors appointments, she'd take notes and since my sister Amy is a physician she also thought of questions that I didn't. > If your doctor hasn't suggested it ask him/her about pulmonary rehab. The rehab I went to changed my life and helped me in a HUGE way. I learned about living with lung disease and how to live and exercise safely with my compromised lungs. > > So hang around, ask questions and make friends. I've been part of this group for over 2 and a half years. I despise this disease but I can't deny the blessings it has brought into my life. Of those blessings this group is the brightest! >  > Beth in North Carolina > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Thank you, Beth. I will be looking into pulmonary rehab - one of my New Year "to do's". I am getting a new doctor and he probably will have som suggestions. What is Fibrotic NSIP? Thanks again.Sandy IPF 08, Florida Subject: SandyTo: Breathe-Support Date: Monday, January 5, 2009, 4:37 PM Welcome! Just wanted to add my 2 cents and welcome you to Breathe Support. As we always say, I'm sorry you had reason to look for us but since you did I'm glad you found us. My name is Beth, I am 49 and live in Durham NC. I was diagnosed with pulmonary fibrosis in June of 2006 and have been learning to live with it ever since. Continue asking questions, getting second, third etc opinions. Keep copies of all your records so that you can keep track of everything yourself. Don't depend on the doctors to keep track of your records and all your test results. You have to advocate for yourself. Your son being so involved will be a tremendous help. In the beginning I took one of my sisters with me to some of my doctors appointments, she'd take notes and since my sister Amy is a physician she also thought of questions that I didn't. If your doctor hasn't suggested it ask him/her about pulmonary rehab. The rehab I went to changed my life and helped me in a HUGE way. I learned about living with lung disease and how to live and exercise safely with my compromised lungs. So hang around, ask questions and make friends. I've been part of this group for over 2 and a half years. I despise this disease but I can't deny the blessings it has brought into my life. Of those blessings this group is the brightest! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Sandy, Fibrotic NSIP is Fibrotic Non-Specific Interstitial Pneumonitis. It's one of the diseases that causes pulmonary fibrosis. There are over 200 different diseases that cause lung scarring (pulmonary fibrosis) The type that I have is frequently associated with an auto-immune disease. It can be slow to progress and sometimes doesn't progress at all for long periods of time. It is often responsive to treatment with prednisone. Good luck with the new doctor. Please keep us posted! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Monday, January 5, 2009 6:48:08 PMSubject: Re: Sandy Thank you, Beth. I will be looking into pulmonary rehab - one of my New Year "to do's". I am getting a new doctor and he probably will have som suggestions. What is Fibrotic NSIP? Thanks again.Sandy IPF 08, Florida From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: SandyTo: Breathe-Support@ yahoogroups. comDate: Monday, January 5, 2009, 4:37 PM Welcome! Just wanted to add my 2 cents and welcome you to Breathe Support. As we always say, I'm sorry you had reason to look for us but since you did I'm glad you found us. My name is Beth, I am 49 and live in Durham NC. I was diagnosed with pulmonary fibrosis in June of 2006 and have been learning to live with it ever since. Continue asking questions, getting second, third etc opinions. Keep copies of all your records so that you can keep track of everything yourself. Don't depend on the doctors to keep track of your records and all your test results. You have to advocate for yourself. Your son being so involved will be a tremendous help. In the beginning I took one of my sisters with me to some of my doctors appointments, she'd take notes and since my sister Amy is a physician she also thought of questions that I didn't. If your doctor hasn't suggested it ask him/her about pulmonary rehab. The rehab I went to changed my life and helped me in a HUGE way. I learned about living with lung disease and how to live and exercise safely with my compromised lungs. So hang around, ask questions and make friends. I've been part of this group for over 2 and a half years. I despise this disease but I can't deny the blessings it has brought into my life. Of those blessings this group is the brightest! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Sandy, Fibrotic NSIP is Fibrotic Non-Specific Interstitial Pneumonitis. It's one of the diseases that causes pulmonary fibrosis. There are over 200 different diseases that cause lung scarring (pulmonary fibrosis) The type that I have is frequently associated with an auto-immune disease. It can be slow to progress and sometimes doesn't progress at all for long periods of time. It is often responsive to treatment with prednisone. Good luck with the new doctor. Please keep us posted! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Monday, January 5, 2009 6:48:08 PMSubject: Re: Sandy Thank you, Beth. I will be looking into pulmonary rehab - one of my New Year "to do's". I am getting a new doctor and he probably will have som suggestions. What is Fibrotic NSIP? Thanks again.Sandy IPF 08, Florida From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: SandyTo: Breathe-Support@ yahoogroups. comDate: Monday, January 5, 2009, 4:37 PM Welcome! Just wanted to add my 2 cents and welcome you to Breathe Support. As we always say, I'm sorry you had reason to look for us but since you did I'm glad you found us. My name is Beth, I am 49 and live in Durham NC. I was diagnosed with pulmonary fibrosis in June of 2006 and have been learning to live with it ever since. Continue asking questions, getting second, third etc opinions. Keep copies of all your records so that you can keep track of everything yourself. Don't depend on the doctors to keep track of your records and all your test results. You have to advocate for yourself. Your son being so involved will be a tremendous help. In the beginning I took one of my sisters with me to some of my doctors appointments, she'd take notes and since my sister Amy is a physician she also thought of questions that I didn't. If your doctor hasn't suggested it ask him/her about pulmonary rehab. The rehab I went to changed my life and helped me in a HUGE way. I learned about living with lung disease and how to live and exercise safely with my compromised lungs. So hang around, ask questions and make friends. I've been part of this group for over 2 and a half years. I despise this disease but I can't deny the blessings it has brought into my life. Of those blessings this group is the brightest! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
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