Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Hi Darlene, I live a little over an hour from you. I live in Silver Springs, just NE of Ocala. I go to Shands in Gainsville. The reason for a University is the knowledge they have about PF. There are actually Pulmo. Dr.s that don't know much about it.A few more here go to Shands. lives close to you. I am sure you'll hear from her.. Sounds like we need to get together for lunch. As far as financially-- I had insurance then to Medicare, but before Shands our Co-pay and some tests weren't covered so that was quite expensive. They have a financial dept. you can talk to also. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Thank you all for your kindness. I'm still not feeling on top of the world today but perhaps that will change. I live in East Central Florida just south of Daytona Beach. As for the hospital/medical stuff I have only been local so far. What benefits are there to travelng to a university medical center. Forget what I'm facing medically, what am I facing financially?Darlene> > > > Subject: Re: New to this board> To: Breathe-Support > Date: Tuesday, May 26, 2009, 4:27 PM> > > > > > > > > > > > Darlene,> Welcome, welcome, welcome. I know you would do anything to change your needing to look for a group like this but since you did have a need to look I'm so glad you found us.> My name is Beth and I'm the moderator here. I'm 49 (50 in July) and I was diagnosed just exactly 3 years ago when I was 46. I do understand exactly how you are feeling and my diagnosis process was in some ways similar to yours. I waited though, till I was alot sicker to go to the hospital which I don't recommend by the way. > > Obviously you've been doing alot of research on the internet so you've got a ton of information. Have you contacted the Pulmonary Fibrosis Foundation? www.pulmonaryfibros is.org is their website. Lots of good reliable information there. I'd also recommend reading the archives of this board. We've been over every topic you can imagine and you'll find lots of experiences and opinions. > You don't mention where you are but at some point you may want to consider being evaluated at a university medical center with an interstitial lung disease program. If you go to www.ipfnet.org you will find connections to 22 different 'centers of excellence' for interstitial lung disease across the US. > Please know that you are among friends here. We 'get it' in a way that no one else can. Feel free to ask whatever questions come to mind. Nothing is off limits!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > From: darlenebarry1954 <darlenebarry1954@ yahoo.com>> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, May 26, 2009 4:03:58 PM> Subject: New to this board> > > > Hi,> I have recently been diagnosed with IPF, like within the last five weeks. I immediately went to the internet to find out all that I could and got way more than I bargained for. I managed to freak myself out, get angry with everyone and have cried myself to sleep a few times. I feel so helpless. I have always been blessed with pretty good health. No major illnesses and always strong enough to get through just about anything. I am 55 years old and have learned that there is very little I can do about changing other people, places and situations but have always been able to control what is going on with myself. I feel like my body has just turned into my head and heart's enemy. I am married, and have a wonderfully big family with 5 kids and 7 grandkids. You know I have been blessed. I really have no excuse for feeling as negative as I do... it really is not like me and I'm not loving this side of me. Acceptance is difficult. I have only been feeling poorly> for about six months. I started noticing that I would become a little winded when I would climb the stairs at work (something I do at least 5-6 times each day). My boss was concerned that it may be something with my heart (she just experienced congestive heart failure 4 months ago) and she keep pushing me toward the doctor until I decided to have it checked out. Good news! My heart is in great shape! After the nuclear stress test and before the heart catherization, I got a terrible migraine headache and had to go to the emergency room. They did fix the headache but after they put that little finger oximeter on me they didn't concentrate on anything but my O2 levels. I spent a week in the hospital being stuck and re-stuck. I had CT, MRI's a bronchoscopy and the heart cath, as well as what ever else they did. They made the diagnosis and sent me home on O2, which I'm on pretty much 24/7. As long as I'm sitting quietly, not doing anything more than> breathing my O2 levels are ok, but if I stand the levels drop right away. I am starting a pulmonary rehab this week, hopefully the exercise will help me cope a little better. I have returned to work, I have a desk job, and I carry my O2 with me. I'm hoping that I can count on you all to remind me that it's not over until it's over and help me feel like I do have some say in how things go. > > Thanks for letting me go on...> Darlene> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Hi Darlene, I live a little over an hour from you. I live in Silver Springs, just NE of Ocala. I go to Shands in Gainsville. The reason for a University is the knowledge they have about PF. There are actually Pulmo. Dr.s that don't know much about it.A few more here go to Shands. lives close to you. I am sure you'll hear from her.. Sounds like we need to get together for lunch. As far as financially-- I had insurance then to Medicare, but before Shands our Co-pay and some tests weren't covered so that was quite expensive. They have a financial dept. you can talk to also. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Thank you all for your kindness. I'm still not feeling on top of the world today but perhaps that will change. I live in East Central Florida just south of Daytona Beach. As for the hospital/medical stuff I have only been local so far. What benefits are there to travelng to a university medical center. Forget what I'm facing medically, what am I facing financially?Darlene> > > > Subject: Re: New to this board> To: Breathe-Support > Date: Tuesday, May 26, 2009, 4:27 PM> > > > > > > > > > > > Darlene,> Welcome, welcome, welcome. I know you would do anything to change your needing to look for a group like this but since you did have a need to look I'm so glad you found us.> My name is Beth and I'm the moderator here. I'm 49 (50 in July) and I was diagnosed just exactly 3 years ago when I was 46. I do understand exactly how you are feeling and my diagnosis process was in some ways similar to yours. I waited though, till I was alot sicker to go to the hospital which I don't recommend by the way. > > Obviously you've been doing alot of research on the internet so you've got a ton of information. Have you contacted the Pulmonary Fibrosis Foundation? www.pulmonaryfibros is.org is their website. Lots of good reliable information there. I'd also recommend reading the archives of this board. We've been over every topic you can imagine and you'll find lots of experiences and opinions. > You don't mention where you are but at some point you may want to consider being evaluated at a university medical center with an interstitial lung disease program. If you go to www.ipfnet.org you will find connections to 22 different 'centers of excellence' for interstitial lung disease across the US. > Please know that you are among friends here. We 'get it' in a way that no one else can. Feel free to ask whatever questions come to mind. Nothing is off limits!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > From: darlenebarry1954 <darlenebarry1954@ yahoo.com>> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, May 26, 2009 4:03:58 PM> Subject: New to this board> > > > Hi,> I have recently been diagnosed with IPF, like within the last five weeks. I immediately went to the internet to find out all that I could and got way more than I bargained for. I managed to freak myself out, get angry with everyone and have cried myself to sleep a few times. I feel so helpless. I have always been blessed with pretty good health. No major illnesses and always strong enough to get through just about anything. I am 55 years old and have learned that there is very little I can do about changing other people, places and situations but have always been able to control what is going on with myself. I feel like my body has just turned into my head and heart's enemy. I am married, and have a wonderfully big family with 5 kids and 7 grandkids. You know I have been blessed. I really have no excuse for feeling as negative as I do... it really is not like me and I'm not loving this side of me. Acceptance is difficult. I have only been feeling poorly> for about six months. I started noticing that I would become a little winded when I would climb the stairs at work (something I do at least 5-6 times each day). My boss was concerned that it may be something with my heart (she just experienced congestive heart failure 4 months ago) and she keep pushing me toward the doctor until I decided to have it checked out. Good news! My heart is in great shape! After the nuclear stress test and before the heart catherization, I got a terrible migraine headache and had to go to the emergency room. They did fix the headache but after they put that little finger oximeter on me they didn't concentrate on anything but my O2 levels. I spent a week in the hospital being stuck and re-stuck. I had CT, MRI's a bronchoscopy and the heart cath, as well as what ever else they did. They made the diagnosis and sent me home on O2, which I'm on pretty much 24/7. As long as I'm sitting quietly, not doing anything more than> breathing my O2 levels are ok, but if I stand the levels drop right away. I am starting a pulmonary rehab this week, hopefully the exercise will help me cope a little better. I have returned to work, I have a desk job, and I carry my O2 with me. I'm hoping that I can count on you all to remind me that it's not over until it's over and help me feel like I do have some say in how things go. > > Thanks for letting me go on...> Darlene> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Hi Darlene, I live a little over an hour from you. I live in Silver Springs, just NE of Ocala. I go to Shands in Gainsville. The reason for a University is the knowledge they have about PF. There are actually Pulmo. Dr.s that don't know much about it.A few more here go to Shands. lives close to you. I am sure you'll hear from her.. Sounds like we need to get together for lunch. As far as financially-- I had insurance then to Medicare, but before Shands our Co-pay and some tests weren't covered so that was quite expensive. They have a financial dept. you can talk to also. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Thank you all for your kindness. I'm still not feeling on top of the world today but perhaps that will change. I live in East Central Florida just south of Daytona Beach. As for the hospital/medical stuff I have only been local so far. What benefits are there to travelng to a university medical center. Forget what I'm facing medically, what am I facing financially?Darlene> > > > Subject: Re: New to this board> To: Breathe-Support > Date: Tuesday, May 26, 2009, 4:27 PM> > > > > > > > > > > > Darlene,> Welcome, welcome, welcome. I know you would do anything to change your needing to look for a group like this but since you did have a need to look I'm so glad you found us.> My name is Beth and I'm the moderator here. I'm 49 (50 in July) and I was diagnosed just exactly 3 years ago when I was 46. I do understand exactly how you are feeling and my diagnosis process was in some ways similar to yours. I waited though, till I was alot sicker to go to the hospital which I don't recommend by the way. > > Obviously you've been doing alot of research on the internet so you've got a ton of information. Have you contacted the Pulmonary Fibrosis Foundation? www.pulmonaryfibros is.org is their website. Lots of good reliable information there. I'd also recommend reading the archives of this board. We've been over every topic you can imagine and you'll find lots of experiences and opinions. > You don't mention where you are but at some point you may want to consider being evaluated at a university medical center with an interstitial lung disease program. If you go to www.ipfnet.org you will find connections to 22 different 'centers of excellence' for interstitial lung disease across the US. > Please know that you are among friends here. We 'get it' in a way that no one else can. Feel free to ask whatever questions come to mind. Nothing is off limits!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > From: darlenebarry1954 <darlenebarry1954@ yahoo.com>> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, May 26, 2009 4:03:58 PM> Subject: New to this board> > > > Hi,> I have recently been diagnosed with IPF, like within the last five weeks. I immediately went to the internet to find out all that I could and got way more than I bargained for. I managed to freak myself out, get angry with everyone and have cried myself to sleep a few times. I feel so helpless. I have always been blessed with pretty good health. No major illnesses and always strong enough to get through just about anything. I am 55 years old and have learned that there is very little I can do about changing other people, places and situations but have always been able to control what is going on with myself. I feel like my body has just turned into my head and heart's enemy. I am married, and have a wonderfully big family with 5 kids and 7 grandkids. You know I have been blessed. I really have no excuse for feeling as negative as I do... it really is not like me and I'm not loving this side of me. Acceptance is difficult. I have only been feeling poorly> for about six months. I started noticing that I would become a little winded when I would climb the stairs at work (something I do at least 5-6 times each day). My boss was concerned that it may be something with my heart (she just experienced congestive heart failure 4 months ago) and she keep pushing me toward the doctor until I decided to have it checked out. Good news! My heart is in great shape! After the nuclear stress test and before the heart catherization, I got a terrible migraine headache and had to go to the emergency room. They did fix the headache but after they put that little finger oximeter on me they didn't concentrate on anything but my O2 levels. I spent a week in the hospital being stuck and re-stuck. I had CT, MRI's a bronchoscopy and the heart cath, as well as what ever else they did. They made the diagnosis and sent me home on O2, which I'm on pretty much 24/7. As long as I'm sitting quietly, not doing anything more than> breathing my O2 levels are ok, but if I stand the levels drop right away. I am starting a pulmonary rehab this week, hopefully the exercise will help me cope a little better. I have returned to work, I have a desk job, and I carry my O2 with me. I'm hoping that I can count on you all to remind me that it's not over until it's over and help me feel like I do have some say in how things go. > > Thanks for letting me go on...> Darlene> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Darlene, The benefits to going to a university medical center with an ILD program are many. Foremost among them are that you are seen by specialists who are actually familiar with interstitial lung disease. The illnesses that we have are uncommon. Community based physicians even community based pulmonologists do not see enough of it to be familiar with it and treat it properly. They also don't have the same type of access to the latest research and clinical trials. With a relatively rare disease we need every advantage we can muster. Being seen at a university medical center with an ILD program is a significant advantage. We have several members in Florida. Peggy is outside Ocala and is seen at Shands by the specialists there. I know that our other Florida members will speak up. Back when I was still under my old company's insurance (Aetna) they paid for my visits to the specialists at Columbia Presbyterian in NY. Now I am on disability and Medicare and my care at Duke University is covered. If you have health insurance it should pay for an evaluation at a major university center. If you don't have insurance (as I did not at one time) there are funds at many of these hospitals that can help pay the costs. I know all this is scary but believe me the more solid information you can gather about what is going on in your body the better you will feel. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, May 27, 2009 10:37:52 AMSubject: Re: New to this board Thank you all for your kindness. I'm still not feeling on top of the world today but perhaps that will change. I live in East Central Florida just south of Daytona Beach. As for the hospital/medical stuff I have only been local so far. What benefits are there to travelng to a university medical center. Forget what I'm facing medically, what am I facing financially?Darlene> > > From: Beth <mbmurtha@.. .>> Subject: Re: New to this board> To: Breathe-Support@ yahoogroups. com> Date: Tuesday, May 26, 2009, 4:27 PM> > > > > > > > > > > > Darlene,> Welcome, welcome, welcome. I know you would do anything to change your needing to look for a group like this but since you did have a need to look I'm so glad you found us.> My name is Beth and I'm the moderator here. I'm 49 (50 in July) and I was diagnosed just exactly 3 years ago when I was 46. I do understand exactly how you are feeling and my diagnosis process was in some ways similar to yours. I waited though, till I was alot sicker to go to the hospital which I don't recommend by the way. > > Obviously you've been doing alot of research on the internet so you've got a ton of information. Have you contacted the Pulmonary Fibrosis Foundation? www.pulmonaryfibros is.org is their website. Lots of good reliable information there. I'd also recommend reading the archives of this board. We've been over every topic you can imagine and you'll find lots of experiences and opinions. > You don't mention where you are but at some point you may want to consider being evaluated at a university medical center with an interstitial lung disease program. If you go to www.ipfnet.org you will find connections to 22 different 'centers of excellence' for interstitial lung disease across the US. > Please know that you are among friends here. We 'get it' in a way that no one else can. Feel free to ask whatever questions come to mind. Nothing is off limits!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > From: darlenebarry1954 <darlenebarry1954@ yahoo.com>> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, May 26, 2009 4:03:58 PM> Subject: New to this board> > > > Hi,> I have recently been diagnosed with IPF, like within the last five weeks. I immediately went to the internet to find out all that I could and got way more than I bargained for. I managed to freak myself out, get angry with everyone and have cried myself to sleep a few times. I feel so helpless. I have always been blessed with pretty good health. No major illnesses and always strong enough to get through just about anything. I am 55 years old and have learned that there is very little I can do about changing other people, places and situations but have always been able to control what is going on with myself. I feel like my body has just turned into my head and heart's enemy. I am married, and have a wonderfully big family with 5 kids and 7 grandkids. You know I have been blessed. I really have no excuse for feeling as negative as I do... it really is not like me and I'm not loving this side of me. Acceptance is difficult. I have only been feeling poorly> for about six months. I started noticing that I would become a little winded when I would climb the stairs at work (something I do at least 5-6 times each day). My boss was concerned that it may be something with my heart (she just experienced congestive heart failure 4 months ago) and she keep pushing me toward the doctor until I decided to have it checked out. Good news! My heart is in great shape! After the nuclear stress test and before the heart catherization, I got a terrible migraine headache and had to go to the emergency room. They did fix the headache but after they put that little finger oximeter on me they didn't concentrate on anything but my O2 levels. I spent a week in the hospital being stuck and re-stuck. I had CT, MRI's a bronchoscopy and the heart cath, as well as what ever else they did. They made the diagnosis and sent me home on O2, which I'm on pretty much 24/7. As long as I'm sitting quietly, not doing anything more than> breathing my O2 levels are ok, but if I stand the levels drop right away. I am starting a pulmonary rehab this week, hopefully the exercise will help me cope a little better. I have returned to work, I have a desk job, and I carry my O2 with me. I'm hoping that I can count on you all to remind me that it's not over until it's over and help me feel like I do have some say in how things go. > > Thanks for letting me go on...> Darlene> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Darlene, The benefits to going to a university medical center with an ILD program are many. Foremost among them are that you are seen by specialists who are actually familiar with interstitial lung disease. The illnesses that we have are uncommon. Community based physicians even community based pulmonologists do not see enough of it to be familiar with it and treat it properly. They also don't have the same type of access to the latest research and clinical trials. With a relatively rare disease we need every advantage we can muster. Being seen at a university medical center with an ILD program is a significant advantage. We have several members in Florida. Peggy is outside Ocala and is seen at Shands by the specialists there. I know that our other Florida members will speak up. Back when I was still under my old company's insurance (Aetna) they paid for my visits to the specialists at Columbia Presbyterian in NY. Now I am on disability and Medicare and my care at Duke University is covered. If you have health insurance it should pay for an evaluation at a major university center. If you don't have insurance (as I did not at one time) there are funds at many of these hospitals that can help pay the costs. I know all this is scary but believe me the more solid information you can gather about what is going on in your body the better you will feel. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, May 27, 2009 10:37:52 AMSubject: Re: New to this board Thank you all for your kindness. I'm still not feeling on top of the world today but perhaps that will change. I live in East Central Florida just south of Daytona Beach. As for the hospital/medical stuff I have only been local so far. What benefits are there to travelng to a university medical center. Forget what I'm facing medically, what am I facing financially?Darlene> > > From: Beth <mbmurtha@.. .>> Subject: Re: New to this board> To: Breathe-Support@ yahoogroups. com> Date: Tuesday, May 26, 2009, 4:27 PM> > > > > > > > > > > > Darlene,> Welcome, welcome, welcome. I know you would do anything to change your needing to look for a group like this but since you did have a need to look I'm so glad you found us.> My name is Beth and I'm the moderator here. I'm 49 (50 in July) and I was diagnosed just exactly 3 years ago when I was 46. I do understand exactly how you are feeling and my diagnosis process was in some ways similar to yours. I waited though, till I was alot sicker to go to the hospital which I don't recommend by the way. > > Obviously you've been doing alot of research on the internet so you've got a ton of information. Have you contacted the Pulmonary Fibrosis Foundation? www.pulmonaryfibros is.org is their website. Lots of good reliable information there. I'd also recommend reading the archives of this board. We've been over every topic you can imagine and you'll find lots of experiences and opinions. > You don't mention where you are but at some point you may want to consider being evaluated at a university medical center with an interstitial lung disease program. If you go to www.ipfnet.org you will find connections to 22 different 'centers of excellence' for interstitial lung disease across the US. > Please know that you are among friends here. We 'get it' in a way that no one else can. Feel free to ask whatever questions come to mind. Nothing is off limits!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > From: darlenebarry1954 <darlenebarry1954@ yahoo.com>> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, May 26, 2009 4:03:58 PM> Subject: New to this board> > > > Hi,> I have recently been diagnosed with IPF, like within the last five weeks. I immediately went to the internet to find out all that I could and got way more than I bargained for. I managed to freak myself out, get angry with everyone and have cried myself to sleep a few times. I feel so helpless. I have always been blessed with pretty good health. No major illnesses and always strong enough to get through just about anything. I am 55 years old and have learned that there is very little I can do about changing other people, places and situations but have always been able to control what is going on with myself. I feel like my body has just turned into my head and heart's enemy. I am married, and have a wonderfully big family with 5 kids and 7 grandkids. You know I have been blessed. I really have no excuse for feeling as negative as I do... it really is not like me and I'm not loving this side of me. Acceptance is difficult. I have only been feeling poorly> for about six months. I started noticing that I would become a little winded when I would climb the stairs at work (something I do at least 5-6 times each day). My boss was concerned that it may be something with my heart (she just experienced congestive heart failure 4 months ago) and she keep pushing me toward the doctor until I decided to have it checked out. Good news! My heart is in great shape! After the nuclear stress test and before the heart catherization, I got a terrible migraine headache and had to go to the emergency room. They did fix the headache but after they put that little finger oximeter on me they didn't concentrate on anything but my O2 levels. I spent a week in the hospital being stuck and re-stuck. I had CT, MRI's a bronchoscopy and the heart cath, as well as what ever else they did. They made the diagnosis and sent me home on O2, which I'm on pretty much 24/7. As long as I'm sitting quietly, not doing anything more than> breathing my O2 levels are ok, but if I stand the levels drop right away. I am starting a pulmonary rehab this week, hopefully the exercise will help me cope a little better. I have returned to work, I have a desk job, and I carry my O2 with me. I'm hoping that I can count on you all to remind me that it's not over until it's over and help me feel like I do have some say in how things go. > > Thanks for letting me go on...> Darlene> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 financially depends on your medical insurance peggy lives in Florida and goes to Shands she can give you more info Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: New to this boardTo: Breathe-Support Date: Wednesday, May 27, 2009, 10:37 AM Thank you all for your kindness. I'm still not feeling on top of the world today but perhaps that will change. I live in East Central Florida just south of Daytona Beach. As for the hospital/medical stuff I have only been local so far. What benefits are there to travelng to a university medical center. Forget what I'm facing medically, what am I facing financially?Darlene> > > From: Beth <mbmurtha@.. .>> Subject: Re: New to this board> To: Breathe-Support@ yahoogroups. com> Date: Tuesday, May 26, 2009, 4:27 PM> > > > > > > > > > > > Darlene,> Welcome, welcome, welcome. I know you would do anything to change your needing to look for a group like this but since you did have a need to look I'm so glad you found us.> My name is Beth and I'm the moderator here. I'm 49 (50 in July) and I was diagnosed just exactly 3 years ago when I was 46. I do understand exactly how you are feeling and my diagnosis process was in some ways similar to yours. I waited though, till I was alot sicker to go to the hospital which I don't recommend by the way. > > Obviously you've been doing alot of research on the internet so you've got a ton of information. Have you contacted the Pulmonary Fibrosis Foundation? www.pulmonaryfibros is.org is their website. Lots of good reliable information there. I'd also recommend reading the archives of this board. We've been over every topic you can imagine and you'll find lots of experiences and opinions. > You don't mention where you are but at some point you may want to consider being evaluated at a university medical center with an interstitial lung disease program. If you go to www.ipfnet.org you will find connections to 22 different 'centers of excellence' for interstitial lung disease across the US. > Please know that you are among friends here. We 'get it' in a way that no one else can. Feel free to ask whatever questions come to mind. Nothing is off limits!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > From: darlenebarry1954 <darlenebarry1954@ yahoo.com>> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, May 26, 2009 4:03:58 PM> Subject: New to this board> > > > Hi,> I have recently been diagnosed with IPF, like within the last five weeks. I immediately went to the internet to find out all that I could and got way more than I bargained for. I managed to freak myself out, get angry with everyone and have cried myself to sleep a few times. I feel so helpless. I have always been blessed with pretty good health. No major illnesses and always strong enough to get through just about anything. I am 55 years old and have learned that there is very little I can do about changing other people, places and situations but have always been able to control what is going on with myself. I feel like my body has just turned into my head and heart's enemy. I am married, and have a wonderfully big family with 5 kids and 7 grandkids. You know I have been blessed. I really have no excuse for feeling as negative as I do... it really is not like me and I'm not loving this side of me. Acceptance is difficult. I have only been feeling poorly> for about six months. I started noticing that I would become a little winded when I would climb the stairs at work (something I do at least 5-6 times each day). My boss was concerned that it may be something with my heart (she just experienced congestive heart failure 4 months ago) and she keep pushing me toward the doctor until I decided to have it checked out. Good news! My heart is in great shape! After the nuclear stress test and before the heart catherization, I got a terrible migraine headache and had to go to the emergency room. They did fix the headache but after they put that little finger oximeter on me they didn't concentrate on anything but my O2 levels. I spent a week in the hospital being stuck and re-stuck. I had CT, MRI's a bronchoscopy and the heart cath, as well as what ever else they did. They made the diagnosis and sent me home on O2, which I'm on pretty much 24/7. As long as I'm sitting quietly, not doing anything more than> breathing my O2 levels are ok, but if I stand the levels drop right away. I am starting a pulmonary rehab this week, hopefully the exercise will help me cope a little better. I have returned to work, I have a desk job, and I carry my O2 with me. I'm hoping that I can count on you all to remind me that it's not over until it's over and help me feel like I do have some say in how things go. > > Thanks for letting me go on...> Darlene> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 financially depends on your medical insurance peggy lives in Florida and goes to Shands she can give you more info Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: New to this boardTo: Breathe-Support Date: Wednesday, May 27, 2009, 10:37 AM Thank you all for your kindness. I'm still not feeling on top of the world today but perhaps that will change. I live in East Central Florida just south of Daytona Beach. As for the hospital/medical stuff I have only been local so far. What benefits are there to travelng to a university medical center. Forget what I'm facing medically, what am I facing financially?Darlene> > > From: Beth <mbmurtha@.. .>> Subject: Re: New to this board> To: Breathe-Support@ yahoogroups. com> Date: Tuesday, May 26, 2009, 4:27 PM> > > > > > > > > > > > Darlene,> Welcome, welcome, welcome. I know you would do anything to change your needing to look for a group like this but since you did have a need to look I'm so glad you found us.> My name is Beth and I'm the moderator here. I'm 49 (50 in July) and I was diagnosed just exactly 3 years ago when I was 46. I do understand exactly how you are feeling and my diagnosis process was in some ways similar to yours. I waited though, till I was alot sicker to go to the hospital which I don't recommend by the way. > > Obviously you've been doing alot of research on the internet so you've got a ton of information. Have you contacted the Pulmonary Fibrosis Foundation? www.pulmonaryfibros is.org is their website. Lots of good reliable information there. I'd also recommend reading the archives of this board. We've been over every topic you can imagine and you'll find lots of experiences and opinions. > You don't mention where you are but at some point you may want to consider being evaluated at a university medical center with an interstitial lung disease program. If you go to www.ipfnet.org you will find connections to 22 different 'centers of excellence' for interstitial lung disease across the US. > Please know that you are among friends here. We 'get it' in a way that no one else can. Feel free to ask whatever questions come to mind. Nothing is off limits!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > From: darlenebarry1954 <darlenebarry1954@ yahoo.com>> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, May 26, 2009 4:03:58 PM> Subject: New to this board> > > > Hi,> I have recently been diagnosed with IPF, like within the last five weeks. I immediately went to the internet to find out all that I could and got way more than I bargained for. I managed to freak myself out, get angry with everyone and have cried myself to sleep a few times. I feel so helpless. I have always been blessed with pretty good health. No major illnesses and always strong enough to get through just about anything. I am 55 years old and have learned that there is very little I can do about changing other people, places and situations but have always been able to control what is going on with myself. I feel like my body has just turned into my head and heart's enemy. I am married, and have a wonderfully big family with 5 kids and 7 grandkids. You know I have been blessed. I really have no excuse for feeling as negative as I do... it really is not like me and I'm not loving this side of me. Acceptance is difficult. I have only been feeling poorly> for about six months. I started noticing that I would become a little winded when I would climb the stairs at work (something I do at least 5-6 times each day). My boss was concerned that it may be something with my heart (she just experienced congestive heart failure 4 months ago) and she keep pushing me toward the doctor until I decided to have it checked out. Good news! My heart is in great shape! After the nuclear stress test and before the heart catherization, I got a terrible migraine headache and had to go to the emergency room. They did fix the headache but after they put that little finger oximeter on me they didn't concentrate on anything but my O2 levels. I spent a week in the hospital being stuck and re-stuck. I had CT, MRI's a bronchoscopy and the heart cath, as well as what ever else they did. They made the diagnosis and sent me home on O2, which I'm on pretty much 24/7. As long as I'm sitting quietly, not doing anything more than> breathing my O2 levels are ok, but if I stand the levels drop right away. I am starting a pulmonary rehab this week, hopefully the exercise will help me cope a little better. I have returned to work, I have a desk job, and I carry my O2 with me. I'm hoping that I can count on you all to remind me that it's not over until it's over and help me feel like I do have some say in how things go. > > Thanks for letting me go on...> Darlene> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Darlene, I know most of the long time members are holding their breath because we are going to discuss prednisone.FIRST it is the best for infection.... WORST on your body.. well my body. It does nothing for IPF. What MG are you taking ? How long have you been on it ? I'll tell you more of my experience if you want but I would NEVER recommend it for IPF.. but you need to listen to your Dr. for sure.. just be sure and ask what it is supposed to do for you and how long you will be on it. Some members have been on it for years and some like me just won't.. Anyhow I hope you don't have the side effects from it.Do you take a anti-anxiety or anti-depressant medication.. If not I am most sure you should be. It helps so much. YES YES, get an oximeter. it is the only way you know how your body is doing. One think to look out for when you aredriving wear it because your sats can drop and you can pass out. Sats drop slowly when we are sitting because we are breathing shallow.people have passed out like that. I am glad you have a big family close to you. I would get ahold of Leanne and have her send you hand books and flyers and give them to family and friends to help them understand. If they will read them they will look at you in a different light. E-mail me anytime or this group is ALWAYS so helpful and someone is always here.God Bless you with strength to endure. I will be praying for you. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Hi Peggy,We used to take the kids to Silver Springs when they were young. It is one of my favorite places in Florida. I do have a pulmonalogist here locally, but sometimes I get mixed messages from him. I know that I am just starting out on this part of my journey. Currently the only medication that I'm taking is Prednisone and I think that is at a lose dosage. I'm also on O2, most of the time. If I'm driving to work or seated (at work and home) I can do without it ... I think. I guess I need to buy one of those oximeters. I don't think I'm a very good judge of what my levels are. My last 6Minute walk test lasted about 45 seconds when my level drop to 84 and I couldn't get it back in the 90's. That was without O2. Before my diagnosis I would just get alittle out of breath after some kind of exhertion, but I recovered pretty quickly. I'm really having a difficult time understanding where that invisible line was that I crossed between need the supplemental O2 and not. Anyway, my doctor wants me to remain positive and hopeful and says that he is too. But sometimes I get the feeling like he is not taking this serious enough. But that is also true of how I feel about everyone sometimes. It is crazy, I don't want anyone to be concerned and at the same time I want everyone to be devastated that I'm sick. Please tell me that this is "a phase that I'm going through" and I will eventually come back to sanity. As for insurance, I currently have insurance, paid for by my employer. I have made my deductible for this year but my copay is 50% of all charges (doctor). Which basically means that my medical costs are just continuing to pile up. I am the only working person in my household. We are just barely getting by ... okay enough of that. On the plus side, my whole family is here husband, siblings, children and all of my wonderful grandchildren. My husband and I own our house and everyone at work is very supportive. I am blessed on so many levels. Help me remember this. Someone told me the other day that God's Will would not take me anywhere that His Grace could not protect me. I need to remember that as well.Darlene> >> >> > From: Beth <mbmurtha@>> > Subject: Re: New to this board> > To: Breathe-Support > > Date: Tuesday, May 26, 2009, 4:27 PM> >> >> >> >> >> >> >> >> >> >> >> > Darlene,> > Welcome, welcome, welcome. I know you would do anything to change > your needing to look for a group like this but since you did have a > need to look I'm so glad you found us.> > My name is Beth and I'm the moderator here. I'm 49 (50 in > July) and I was diagnosed just exactly 3 years ago when I was 46. I > do understand exactly how you are feeling and my diagnosis process > was in some ways similar to yours. I waited though, till I was alot > sicker to go to the hospital which I don't recommend by the way.> >> > Obviously you've been doing alot of research on the internet so > you've got a ton of information. Have you contacted the Pulmonary > Fibrosis Foundation? www.pulmonaryfibros is.org is their website. > Lots of good reliable information there. I'd also recommend reading > the archives of this board. We've been over every topic you can > imagine and you'll find lots of experiences and opinions.> > You don't mention where you are but at some point you may want to > consider being evaluated at a university medical center with an > interstitial lung disease program. If you go to www.ipfnet.org you > will find connections to 22 different 'centers of excellence' for > interstitial lung disease across the US.> > Please know that you are among friends here. We 'get it' in a way > that no one else can. Feel free to ask whatever questions come to > mind. Nothing is off limits!> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> >> >> >> >> >> > From: darlenebarry1954 <darlenebarry1954@ yahoo.com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, May 26, 2009 4:03:58 PM> > Subject: New to this board> >> >> >> > Hi,> > I have recently been diagnosed with IPF, like within the last five > weeks. I immediately went to the internet to find out all that I > could and got way more than I bargained for. I managed to freak > myself out, get angry with everyone and have cried myself to sleep a > few times. I feel so helpless. I have always been blessed with pretty > good health. No major illnesses and always strong enough to get > through just about anything. I am 55 years old and have learned that > there is very little I can do about changing other people, places and > situations but have always been able to control what is going on with > myself. I feel like my body has just turned into my head and heart's > enemy. I am married, and have a wonderfully big family with 5 kids > and 7 grandkids. You know I have been blessed. I really have no > excuse for feeling as negative as I do... it really is not like me > and I'm not loving this side of me. Acceptance is difficult. I have > only been feeling poorly> > for about six months. I started noticing that I would become a > little winded when I would climb the stairs at work (something I do > at least 5-6 times each day). My boss was concerned that it may be > something with my heart (she just experienced congestive heart > failure 4 months ago) and she keep pushing me toward the doctor until > I decided to have it checked out. Good news! My heart is in great > shape! After the nuclear stress test and before the heart > catherization, I got a terrible migraine headache and had to go to > the emergency room. They did fix the headache but after they put that > little finger oximeter on me they didn't concentrate on anything but > my O2 levels. I spent a week in the hospital being stuck and re- > stuck. I had CT, MRI's a bronchoscopy and the heart cath, as well as > what ever else they did. They made the diagnosis and sent me home on > O2, which I'm on pretty much 24/7. As long as I'm sitting quietly, > not doing anything more than> > breathing my O2 levels are ok, but if I stand the levels drop > right away. I am starting a pulmonary rehab this week, hopefully the > exercise will help me cope a little better. I have returned to work, > I have a desk job, and I carry my O2 with me. I'm hoping that I can > count on you all to remind me that it's not over until it's over and > help me feel like I do have some say in how things go.> >> > Thanks for letting me go on...> > Darlene> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Darlene, I know most of the long time members are holding their breath because we are going to discuss prednisone.FIRST it is the best for infection.... WORST on your body.. well my body. It does nothing for IPF. What MG are you taking ? How long have you been on it ? I'll tell you more of my experience if you want but I would NEVER recommend it for IPF.. but you need to listen to your Dr. for sure.. just be sure and ask what it is supposed to do for you and how long you will be on it. Some members have been on it for years and some like me just won't.. Anyhow I hope you don't have the side effects from it.Do you take a anti-anxiety or anti-depressant medication.. If not I am most sure you should be. It helps so much. YES YES, get an oximeter. it is the only way you know how your body is doing. One think to look out for when you aredriving wear it because your sats can drop and you can pass out. Sats drop slowly when we are sitting because we are breathing shallow.people have passed out like that. I am glad you have a big family close to you. I would get ahold of Leanne and have her send you hand books and flyers and give them to family and friends to help them understand. If they will read them they will look at you in a different light. E-mail me anytime or this group is ALWAYS so helpful and someone is always here.God Bless you with strength to endure. I will be praying for you. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Hi Peggy,We used to take the kids to Silver Springs when they were young. It is one of my favorite places in Florida. I do have a pulmonalogist here locally, but sometimes I get mixed messages from him. I know that I am just starting out on this part of my journey. Currently the only medication that I'm taking is Prednisone and I think that is at a lose dosage. I'm also on O2, most of the time. If I'm driving to work or seated (at work and home) I can do without it ... I think. I guess I need to buy one of those oximeters. I don't think I'm a very good judge of what my levels are. My last 6Minute walk test lasted about 45 seconds when my level drop to 84 and I couldn't get it back in the 90's. That was without O2. Before my diagnosis I would just get alittle out of breath after some kind of exhertion, but I recovered pretty quickly. I'm really having a difficult time understanding where that invisible line was that I crossed between need the supplemental O2 and not. Anyway, my doctor wants me to remain positive and hopeful and says that he is too. But sometimes I get the feeling like he is not taking this serious enough. But that is also true of how I feel about everyone sometimes. It is crazy, I don't want anyone to be concerned and at the same time I want everyone to be devastated that I'm sick. Please tell me that this is "a phase that I'm going through" and I will eventually come back to sanity. As for insurance, I currently have insurance, paid for by my employer. I have made my deductible for this year but my copay is 50% of all charges (doctor). Which basically means that my medical costs are just continuing to pile up. I am the only working person in my household. We are just barely getting by ... okay enough of that. On the plus side, my whole family is here husband, siblings, children and all of my wonderful grandchildren. My husband and I own our house and everyone at work is very supportive. I am blessed on so many levels. Help me remember this. Someone told me the other day that God's Will would not take me anywhere that His Grace could not protect me. I need to remember that as well.Darlene> >> >> > From: Beth <mbmurtha@>> > Subject: Re: New to this board> > To: Breathe-Support > > Date: Tuesday, May 26, 2009, 4:27 PM> >> >> >> >> >> >> >> >> >> >> >> > Darlene,> > Welcome, welcome, welcome. I know you would do anything to change > your needing to look for a group like this but since you did have a > need to look I'm so glad you found us.> > My name is Beth and I'm the moderator here. I'm 49 (50 in > July) and I was diagnosed just exactly 3 years ago when I was 46. I > do understand exactly how you are feeling and my diagnosis process > was in some ways similar to yours. I waited though, till I was alot > sicker to go to the hospital which I don't recommend by the way.> >> > Obviously you've been doing alot of research on the internet so > you've got a ton of information. Have you contacted the Pulmonary > Fibrosis Foundation? www.pulmonaryfibros is.org is their website. > Lots of good reliable information there. I'd also recommend reading > the archives of this board. We've been over every topic you can > imagine and you'll find lots of experiences and opinions.> > You don't mention where you are but at some point you may want to > consider being evaluated at a university medical center with an > interstitial lung disease program. If you go to www.ipfnet.org you > will find connections to 22 different 'centers of excellence' for > interstitial lung disease across the US.> > Please know that you are among friends here. We 'get it' in a way > that no one else can. Feel free to ask whatever questions come to > mind. Nothing is off limits!> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> >> >> >> >> >> > From: darlenebarry1954 <darlenebarry1954@ yahoo.com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, May 26, 2009 4:03:58 PM> > Subject: New to this board> >> >> >> > Hi,> > I have recently been diagnosed with IPF, like within the last five > weeks. I immediately went to the internet to find out all that I > could and got way more than I bargained for. I managed to freak > myself out, get angry with everyone and have cried myself to sleep a > few times. I feel so helpless. I have always been blessed with pretty > good health. No major illnesses and always strong enough to get > through just about anything. I am 55 years old and have learned that > there is very little I can do about changing other people, places and > situations but have always been able to control what is going on with > myself. I feel like my body has just turned into my head and heart's > enemy. I am married, and have a wonderfully big family with 5 kids > and 7 grandkids. You know I have been blessed. I really have no > excuse for feeling as negative as I do... it really is not like me > and I'm not loving this side of me. Acceptance is difficult. I have > only been feeling poorly> > for about six months. I started noticing that I would become a > little winded when I would climb the stairs at work (something I do > at least 5-6 times each day). My boss was concerned that it may be > something with my heart (she just experienced congestive heart > failure 4 months ago) and she keep pushing me toward the doctor until > I decided to have it checked out. Good news! My heart is in great > shape! After the nuclear stress test and before the heart > catherization, I got a terrible migraine headache and had to go to > the emergency room. They did fix the headache but after they put that > little finger oximeter on me they didn't concentrate on anything but > my O2 levels. I spent a week in the hospital being stuck and re- > stuck. I had CT, MRI's a bronchoscopy and the heart cath, as well as > what ever else they did. They made the diagnosis and sent me home on > O2, which I'm on pretty much 24/7. As long as I'm sitting quietly, > not doing anything more than> > breathing my O2 levels are ok, but if I stand the levels drop > right away. I am starting a pulmonary rehab this week, hopefully the > exercise will help me cope a little better. I have returned to work, > I have a desk job, and I carry my O2 with me. I'm hoping that I can > count on you all to remind me that it's not over until it's over and > help me feel like I do have some say in how things go.> >> > Thanks for letting me go on...> > Darlene> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Peggy, The only thing I would point out regarding your prednisone comments is that prednisone doesn't do anything for infection. It is used and is extremely effective to relieve many type of inflmmation. It is one of the best anti-inflammatory medications out there. But for infections....that's where antibiotics are used. Sometimes you will have a respiratory infection with inflammation and you'll see an antibiotic used to cure the infection along with prednisone to relieve the inflammation. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, May 27, 2009 1:04:40 PMSubject: Re: Re: New to this boardDarlene, I know most of the long time members are holding their breath because we are going to discuss prednisone. FIRST it is the best for infection.... WORST on your body.. well my body. It does nothing for IPF. What MG are you taking ? How long have you been on it ? I'll tell you more of my experience if you want but I would NEVER recommend it for IPF.. but you need to listen to your Dr. for sure.. just be sure and ask what it is supposed to do for you and how long you will be on it. Some members have been on it for years and some like me just won't.. Anyhow I hope you don't have the side effects from it. Do you take a anti-anxiety or anti-depressant medication.. If not I am most sure you should be. It helps so much. YES YES, get an oximeter. it is the only way you know how your body is doing. One think to look out for when you are driving wear it because your sats can drop and you can pass out. Sats drop slowly when we are sitting because we are breathing shallow. people have passed out like that. I am glad you have a big family close to you. I would get ahold of Leanne and have her send you hand books and flyers and give them to family and friends to help them understand. If they will read them they will look at you in a different light. E-mail me anytime or this group is ALWAYS so helpful and someone is always here. God Bless you with strength to endure. I will be praying for you. Love and Prayers, Peggy IPF 2004, Florida Worry looks around, Sorry looks back, Faith looks up. Hi Peggy,We used to take the kids to Silver Springs when they were young. It is one of my favorite places in Florida. I do have a pulmonalogist here locally, but sometimes I get mixed messages from him. I know that I am just starting out on this part of my journey. Currently the only medication that I'm taking is Prednisone and I think that is at a lose dosage. I'm also on O2, most of the time. If I'm driving to work or seated (at work and home) I can do without it ... I think. I guess I need to buy one of those oximeters. I don't think I'm a very good judge of what my levels are. My last 6Minute walk test lasted about 45 seconds when my level drop to 84 and I couldn't get it back in the 90's. That was without O2. Before my diagnosis I would just get alittle out of breath after some kind of exhertion, but I recovered pretty quickly. I'm really having a difficult time understanding where that invisible line was that I crossed between need the supplemental O2 and not. Anyway, my doctor wants me to remain positive and hopeful and says that he is too. But sometimes I get the feeling like he is not taking this serious enough. But that is also true of how I feel about everyone sometimes. It is crazy, I don't want anyone to be concerned and at the same time I want everyone to be devastated that I'm sick. Please tell me that this is "a phase that I'm going through" and I will eventually come back to sanity. As for insurance, I currently have insurance, paid for by my employer. I have made my deductible for this year but my copay is 50% of all charges (doctor). Which basically means that my medical costs are just continuing to pile up. I am the only working person in my household. We are just barely getting by ... okay enough of that. On the plus side, my whole family is here husband, siblings, children and all of my wonderful grandchildren. My husband and I own our house and everyone at work is very supportive. I am blessed on so many levels. Help me remember this. Someone told me the other day that God's Will would not take me anywhere that His Grace could not protect me. I need to remember that as well.Darlene> >> >> > From: Beth <mbmurtha@>> > Subject: Re: New to this board> > To: Breathe-Support@ yahoogroups. com> > Date: Tuesday, May 26, 2009, 4:27 PM> >> >> >> >> >> >> >> >> >> >> >> > Darlene,> > Welcome, welcome, welcome. I know you would do anything to change > your needing to look for a group like this but since you did have a > need to look I'm so glad you found us.> > My name is Beth and I'm the moderator here. I'm 49 (50 in > July) and I was diagnosed just exactly 3 years ago when I was 46. I > do understand exactly how you are feeling and my diagnosis process > was in some ways similar to yours. I waited though, till I was alot > sicker to go to the hospital which I don't recommend by the way.> >> > Obviously you've been doing alot of research on the internet so > you've got a ton of information. Have you contacted the Pulmonary > Fibrosis Foundation? www.pulmonaryfibros is.org is their website. > Lots of good reliable information there. I'd also recommend reading > the archives of this board. We've been over every topic you can > imagine and you'll find lots of experiences and opinions.> > You don't mention where you are but at some point you may want to > consider being evaluated at a university medical center with an > interstitial lung disease program. If you go to www.ipfnet.org you > will find connections to 22 different 'centers of excellence' for > interstitial lung disease across the US.> > Please know that you are among friends here. We 'get it' in a way > that no one else can. Feel free to ask whatever questions come to > mind. Nothing is off limits!> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> >> >> >> >> >> > From: darlenebarry1954 <darlenebarry1954@ yahoo.com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, May 26, 2009 4:03:58 PM> > Subject: New to this board> >> >> >> > Hi,> > I have recently been diagnosed with IPF, like within the last five > weeks. I immediately went to the internet to find out all that I > could and got way more than I bargained for. I managed to freak > myself out, get angry with everyone and have cried myself to sleep a > few times. I feel so helpless. I have always been blessed with pretty > good health. No major illnesses and always strong enough to get > through just about anything. I am 55 years old and have learned that > there is very little I can do about changing other people, places and > situations but have always been able to control what is going on with > myself. I feel like my body has just turned into my head and heart's > enemy. I am married, and have a wonderfully big family with 5 kids > and 7 grandkids. You know I have been blessed. I really have no > excuse for feeling as negative as I do... it really is not like me > and I'm not loving this side of me. Acceptance is difficult. I have > only been feeling poorly> > for about six months. I started noticing that I would become a > little winded when I would climb the stairs at work (something I do > at least 5-6 times each day). My boss was concerned that it may be > something with my heart (she just experienced congestive heart > failure 4 months ago) and she keep pushing me toward the doctor until > I decided to have it checked out. Good news! My heart is in great > shape! After the nuclear stress test and before the heart > catherization, I got a terrible migraine headache and had to go to > the emergency room. They did fix the headache but after they put that > little finger oximeter on me they didn't concentrate on anything but > my O2 levels. I spent a week in the hospital being stuck and re- > stuck. I had CT, MRI's a bronchoscopy and the heart cath, as well as > what ever else they did. They made the diagnosis and sent me home on > O2, which I'm on pretty much 24/7. As long as I'm sitting quietly, > not doing anything more than> > breathing my O2 levels are ok, but if I stand the levels drop > right away. I am starting a pulmonary rehab this week, hopefully the > exercise will help me cope a little better. I have returned to work, > I have a desk job, and I carry my O2 with me. I'm hoping that I can > count on you all to remind me that it's not over until it's over and > help me feel like I do have some say in how things go.> >> > Thanks for letting me go on...> > Darlene> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 MB, OMG I do know that..lol and that is what i meant. it's the OD sorry Darlene. This is why Beth is out Nurse Moderator... I don't know what we would do without her..Thank You MB. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Peggy,The only thing I would point out regarding your prednisone comments is that prednisone doesn't do anything for infection. It is used and is extremely effective to relieve many type of inflmmation. It is one of the best anti-inflammatory medications out there. But for infections....that's where antibiotics are used. Sometimes you will have a respiratory infection with inflammation and you'll see an antibiotic used to cure the infection along with prednisone to relieve the inflammation. BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: Peggy To: Breathe-Support Sent: Wednesday, May 27, 2009 1:04:40 PMSubject: Re: Re: New to this boardDarlene, I know most of the long time members are holding their breath because we are going to discuss prednisone.FIRST it is the best for infection.... WORST on your body.. well my body. It does nothing for IPF. What MG are you taking ? How long have you been on it ? I'll tell you more of my experience if you want but I would NEVER recommend it for IPF.. but you need to listen to your Dr. for sure.. just be sure and ask what it is supposed to do for you and how long you will be on it. Some members have been on it for years and some like me just won't.. Anyhow I hope you don't have the side effects from it.Do you take a anti-anxiety or anti-depressant medication.. If not I am most sure you should be. It helps so much. YES YES, get an oximeter. it is the only way you know how your body is doing. One think to look out for when you aredriving wear it because your sats can drop and you can pass out. Sats drop slowly when we are sitting because we are breathing shallow.people have passed out like that. I am glad you have a big family close to you. I would get ahold of Leanne and have her send you hand books and flyers and give them to family and friends to help them understand. If they will read them they will look at you in a different light. E-mail me anytime or this group is ALWAYS so helpful and someone is always here.God Bless you with strength to endure. I will be praying for you.Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up.<1.247576344>Hi Peggy,We used to take the kids to Silver Springs when they were young. It is one of my favorite places in Florida. I do have a pulmonalogist here locally, but sometimes I get mixed messages from him. I know that I am just starting out on this part of my journey. Currently the only medication that I'm taking is Prednisone and I think that is at a lose dosage. I'm also on O2, most of the time. If I'm driving to work or seated (at work and home) I can do without it ... I think. I guess I need to buy one of those oximeters. I don't think I'm a very good judge of what my levels are. My last 6Minute walk test lasted about 45 seconds when my level drop to 84 and I couldn't get it back in the 90's. That was without O2. Before my diagnosis I would just get alittle out of breath after some kind of exhertion, but I recovered pretty quickly. I'm really having a difficult time understanding where that invisible line was that I crossed between need the supplemental O2 and not. Anyway, my doctor wants me to remain positive and hopeful and says that he is too. But sometimes I get the feeling like he is not taking this serious enough. But that is also true of how I feel about everyone sometimes. It is crazy, I don't want anyone to be concerned and at the same time I want everyone to be devastated that I'm sick. Please tell me that this is "a phase that I'm going through" and I will eventually come back to sanity. As for insurance, I currently have insurance, paid for by my employer. I have made my deductible for this year but my copay is 50% of all charges (doctor). Which basically means that my medical costs are just continuing to pile up. I am the only working person in my household. We are just barely getting by ... okay enough of that. On the plus side, my whole family is here husband, siblings, children and all of my wonderful grandchildren. My husband and I own our house and everyone at work is very supportive. I am blessed on so many levels. Help me remember this. Someone told me the other day that God's Will would not take me anywhere that His Grace could not protect me. I need to remember that as well.Darlene> >> >> > From: Beth <mbmurtha@>> > Subject: Re: New to this board> > To: Breathe-Support@ yahoogroups. com> > Date: Tuesday, May 26, 2009, 4:27 PM> >> >> >> >> >> >> >> >> >> >> >> > Darlene,> > Welcome, welcome, welcome. I know you would do anything to change > your needing to look for a group like this but since you did have a > need to look I'm so glad you found us.> > My name is Beth and I'm the moderator here. I'm 49 (50 in > July) and I was diagnosed just exactly 3 years ago when I was 46. I > do understand exactly how you are feeling and my diagnosis process > was in some ways similar to yours. I waited though, till I was alot > sicker to go to the hospital which I don't recommend by the way.> >> > Obviously you've been doing alot of research on the internet so > you've got a ton of information. Have you contacted the Pulmonary > Fibrosis Foundation? www.pulmonaryfibros is.org is their website. > Lots of good reliable information there. I'd also recommend reading > the archives of this board. We've been over every topic you can > imagine and you'll find lots of experiences and opinions.> > You don't mention where you are but at some point you may want to > consider being evaluated at a university medical center with an > interstitial lung disease program. If you go to www.ipfnet.org you > will find connections to 22 different 'centers of excellence' for > interstitial lung disease across the US.> > Please know that you are among friends here. We 'get it' in a way > that no one else can. Feel free to ask whatever questions come to > mind. Nothing is off limits!> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> >> >> >> >> >> > From: darlenebarry1954 <darlenebarry1954@ yahoo.com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, May 26, 2009 4:03:58 PM> > Subject: New to this board> >> >> >> > Hi,> > I have recently been diagnosed with IPF, like within the last five > weeks. I immediately went to the internet to find out all that I > could and got way more than I bargained for. I managed to freak > myself out, get angry with everyone and have cried myself to sleep a > few times. I feel so helpless. I have always been blessed with pretty > good health. No major illnesses and always strong enough to get > through just about anything. I am 55 years old and have learned that > there is very little I can do about changing other people, places and > situations but have always been able to control what is going on with > myself. I feel like my body has just turned into my head and heart's > enemy. I am married, and have a wonderfully big family with 5 kids > and 7 grandkids. You know I have been blessed. I really have no > excuse for feeling as negative as I do... it really is not like me > and I'm not loving this side of me. Acceptance is difficult. I have > only been feeling poorly> > for about six months. I started noticing that I would become a > little winded when I would climb the stairs at work (something I do > at least 5-6 times each day). My boss was concerned that it may be > something with my heart (she just experienced congestive heart > failure 4 months ago) and she keep pushing me toward the doctor until > I decided to have it checked out. Good news! My heart is in great > shape! After the nuclear stress test and before the heart > catherization, I got a terrible migraine headache and had to go to > the emergency room. They did fix the headache but after they put that > little finger oximeter on me they didn't concentrate on anything but > my O2 levels. I spent a week in the hospital being stuck and re- > stuck. I had CT, MRI's a bronchoscopy and the heart cath, as well as > what ever else they did. They made the diagnosis and sent me home on > O2, which I'm on pretty much 24/7. As long as I'm sitting quietly, > not doing anything more than> > breathing my O2 levels are ok, but if I stand the levels drop > right away. I am starting a pulmonary rehab this week, hopefully the > exercise will help me cope a little better. I have returned to work, > I have a desk job, and I carry my O2 with me. I'm hoping that I can > count on you all to remind me that it's not over until it's over and > help me feel like I do have some say in how things go.> >> > Thanks for letting me go on...> > Darlene> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Darlene my disease is responsive to prednisone -- i t is good for inflamation and has nothing to do with infection -- you need an antibiotic for infection (sorry Peggy) i started on 10 mgs prednisone when i was diagnosed and things calmed down, then moved down to 7.5 mgs for a long time when i had a flare up and a change in progression, prednisone increased to 40 mgs with positive results, each time it took a couple of weeks to see results, it doesn't happen over night then a gradual decrease, the goal was 10 mgs, never got there, had another flare up, back to 40 mgs since disease was responsive to 40 mgs, they put me on Cellcept, and now after many months, i am back down to 10 mgs prednisone yes there are side effects, but the alternative for me would be much worse than the side effects at this time Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: New to this boardTo: Breathe-Support Date: Wednesday, May 27, 2009, 1:04 PM Darlene, I know most of the long time members are holding their breath because we are going to discuss prednisone. FIRST it is the best for infection.... WORST on your body.. well my body. It does nothing for IPF. What MG are you taking ? How long have you been on it ? I'll tell you more of my experience if you want but I would NEVER recommend it for IPF.. but you need to listen to your Dr. for sure.. just be sure and ask what it is supposed to do for you and how long you will be on it. Some members have been on it for years and some like me just won't.. Anyhow I hope you don't have the side effects from it. Do you take a anti-anxiety or anti-depressant medication.. If not I am most sure you should be. It helps so much. YES YES, get an oximeter. it is the only way you know how your body is doing. One think to look out for when you are driving wear it because your sats can drop and you can pass out. Sats drop slowly when we are sitting because we are breathing shallow. people have passed out like that. I am glad you have a big family close to you. I would get ahold of Leanne and have her send you hand books and flyers and give them to family and friends to help them understand. If they will read them they will look at you in a different light. E-mail me anytime or this group is ALWAYS so helpful and someone is always here. God Bless you with strength to endure. I will be praying for you. Love and Prayers, Peggy IPF 2004, Florida Worry looks around, Sorry looks back, Faith looks up. Hi Peggy,We used to take the kids to Silver Springs when they were young. It is one of my favorite places in Florida. I do have a pulmonalogist here locally, but sometimes I get mixed messages from him. I know that I am just starting out on this part of my journey. Currently the only medication that I'm taking is Prednisone and I think that is at a lose dosage. I'm also on O2, most of the time. If I'm driving to work or seated (at work and home) I can do without it ... I think. I guess I need to buy one of those oximeters. I don't think I'm a very good judge of what my levels are. My last 6Minute walk test lasted about 45 seconds when my level drop to 84 and I couldn't get it back in the 90's. That was without O2. Before my diagnosis I would just get alittle out of breath after some kind of exhertion, but I recovered pretty quickly. I'm really having a difficult time understanding where that invisible line was that I crossed between need the supplemental O2 and not. Anyway, my doctor wants me to remain positive and hopeful and says that he is too. But sometimes I get the feeling like he is not taking this serious enough. But that is also true of how I feel about everyone sometimes. It is crazy, I don't want anyone to be concerned and at the same time I want everyone to be devastated that I'm sick. Please tell me that this is "a phase that I'm going through" and I will eventually come back to sanity. As for insurance, I currently have insurance, paid for by my employer. I have made my deductible for this year but my copay is 50% of all charges (doctor). Which basically means that my medical costs are just continuing to pile up. I am the only working person in my household. We are just barely getting by ... okay enough of that. On the plus side, my whole family is here husband, siblings, children and all of my wonderful grandchildren. My husband and I own our house and everyone at work is very supportive. I am blessed on so many levels. Help me remember this. Someone told me the other day that God's Will would not take me anywhere that His Grace could not protect me. I need to remember that as well.Darlene> >> >> > From: Beth <mbmurtha@>> > Subject: Re: New to this board> > To: Breathe-Support@ yahoogroups. com> > Date: Tuesday, May 26, 2009, 4:27 PM> >> >> >> >> >> >> >> >> >> >> >> > Darlene,> > Welcome, welcome, welcome. I know you would do anything to change > your needing to look for a group like this but since you did have a > need to look I'm so glad you found us.> > My name is Beth and I'm the moderator here. I'm 49 (50 in > July) and I was diagnosed just exactly 3 years ago when I was 46. I > do understand exactly how you are feeling and my diagnosis process > was in some ways similar to yours. I waited though, till I was alot > sicker to go to the hospital which I don't recommend by the way.> >> > Obviously you've been doing alot of research on the internet so > you've got a ton of information. Have you contacted the Pulmonary > Fibrosis Foundation? www.pulmonaryfibros is.org is their website. > Lots of good reliable information there. I'd also recommend reading > the archives of this board. We've been over every topic you can > imagine and you'll find lots of experiences and opinions.> > You don't mention where you are but at some point you may want to > consider being evaluated at a university medical center with an > interstitial lung disease program. If you go to www.ipfnet.org you > will find connections to 22 different 'centers of excellence' for > interstitial lung disease across the US.> > Please know that you are among friends here. We 'get it' in a way > that no one else can. Feel free to ask whatever questions come to > mind. Nothing is off limits!> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> >> >> >> >> >> > From: darlenebarry1954 <darlenebarry1954@ yahoo.com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, May 26, 2009 4:03:58 PM> > Subject: New to this board> >> >> >> > Hi,> > I have recently been diagnosed with IPF, like within the last five > weeks. I immediately went to the internet to find out all that I > could and got way more than I bargained for. I managed to freak > myself out, get angry with everyone and have cried myself to sleep a > few times. I feel so helpless. I have always been blessed with pretty > good health. No major illnesses and always strong enough to get > through just about anything. I am 55 years old and have learned that > there is very little I can do about changing other people, places and > situations but have always been able to control what is going on with > myself. I feel like my body has just turned into my head and heart's > enemy. I am married, and have a wonderfully big family with 5 kids > and 7 grandkids. You know I have been blessed. I really have no > excuse for feeling as negative as I do... it really is not like me > and I'm not loving this side of me. Acceptance is difficult. I have > only been feeling poorly> > for about six months. I started noticing that I would become a > little winded when I would climb the stairs at work (something I do > at least 5-6 times each day). My boss was concerned that it may be > something with my heart (she just experienced congestive heart > failure 4 months ago) and she keep pushing me toward the doctor until > I decided to have it checked out. Good news! My heart is in great > shape! After the nuclear stress test and before the heart > catherization, I got a terrible migraine headache and had to go to > the emergency room. They did fix the headache but after they put that > little finger oximeter on me they didn't concentrate on anything but > my O2 levels. I spent a week in the hospital being stuck and re- > stuck. I had CT, MRI's a bronchoscopy and the heart cath, as well as > what ever else they did. They made the diagnosis and sent me home on > O2, which I'm on pretty much 24/7. As long as I'm sitting quietly, > not doing anything more than> > breathing my O2 levels are ok, but if I stand the levels drop > right away. I am starting a pulmonary rehab this week, hopefully the > exercise will help me cope a little better. I have returned to work, > I have a desk job, and I carry my O2 with me. I'm hoping that I can > count on you all to remind me that it's not over until it's over and > help me feel like I do have some say in how things go.> >> > Thanks for letting me go on...> > Darlene> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Darlene my disease is responsive to prednisone -- i t is good for inflamation and has nothing to do with infection -- you need an antibiotic for infection (sorry Peggy) i started on 10 mgs prednisone when i was diagnosed and things calmed down, then moved down to 7.5 mgs for a long time when i had a flare up and a change in progression, prednisone increased to 40 mgs with positive results, each time it took a couple of weeks to see results, it doesn't happen over night then a gradual decrease, the goal was 10 mgs, never got there, had another flare up, back to 40 mgs since disease was responsive to 40 mgs, they put me on Cellcept, and now after many months, i am back down to 10 mgs prednisone yes there are side effects, but the alternative for me would be much worse than the side effects at this time Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: New to this boardTo: Breathe-Support Date: Wednesday, May 27, 2009, 1:04 PM Darlene, I know most of the long time members are holding their breath because we are going to discuss prednisone. FIRST it is the best for infection.... WORST on your body.. well my body. It does nothing for IPF. What MG are you taking ? How long have you been on it ? I'll tell you more of my experience if you want but I would NEVER recommend it for IPF.. but you need to listen to your Dr. for sure.. just be sure and ask what it is supposed to do for you and how long you will be on it. Some members have been on it for years and some like me just won't.. Anyhow I hope you don't have the side effects from it. Do you take a anti-anxiety or anti-depressant medication.. If not I am most sure you should be. It helps so much. YES YES, get an oximeter. it is the only way you know how your body is doing. One think to look out for when you are driving wear it because your sats can drop and you can pass out. Sats drop slowly when we are sitting because we are breathing shallow. people have passed out like that. I am glad you have a big family close to you. I would get ahold of Leanne and have her send you hand books and flyers and give them to family and friends to help them understand. If they will read them they will look at you in a different light. E-mail me anytime or this group is ALWAYS so helpful and someone is always here. God Bless you with strength to endure. I will be praying for you. Love and Prayers, Peggy IPF 2004, Florida Worry looks around, Sorry looks back, Faith looks up. Hi Peggy,We used to take the kids to Silver Springs when they were young. It is one of my favorite places in Florida. I do have a pulmonalogist here locally, but sometimes I get mixed messages from him. I know that I am just starting out on this part of my journey. Currently the only medication that I'm taking is Prednisone and I think that is at a lose dosage. I'm also on O2, most of the time. If I'm driving to work or seated (at work and home) I can do without it ... I think. I guess I need to buy one of those oximeters. I don't think I'm a very good judge of what my levels are. My last 6Minute walk test lasted about 45 seconds when my level drop to 84 and I couldn't get it back in the 90's. That was without O2. Before my diagnosis I would just get alittle out of breath after some kind of exhertion, but I recovered pretty quickly. I'm really having a difficult time understanding where that invisible line was that I crossed between need the supplemental O2 and not. Anyway, my doctor wants me to remain positive and hopeful and says that he is too. But sometimes I get the feeling like he is not taking this serious enough. But that is also true of how I feel about everyone sometimes. It is crazy, I don't want anyone to be concerned and at the same time I want everyone to be devastated that I'm sick. Please tell me that this is "a phase that I'm going through" and I will eventually come back to sanity. As for insurance, I currently have insurance, paid for by my employer. I have made my deductible for this year but my copay is 50% of all charges (doctor). Which basically means that my medical costs are just continuing to pile up. I am the only working person in my household. We are just barely getting by ... okay enough of that. On the plus side, my whole family is here husband, siblings, children and all of my wonderful grandchildren. My husband and I own our house and everyone at work is very supportive. I am blessed on so many levels. Help me remember this. Someone told me the other day that God's Will would not take me anywhere that His Grace could not protect me. I need to remember that as well.Darlene> >> >> > From: Beth <mbmurtha@>> > Subject: Re: New to this board> > To: Breathe-Support@ yahoogroups. com> > Date: Tuesday, May 26, 2009, 4:27 PM> >> >> >> >> >> >> >> >> >> >> >> > Darlene,> > Welcome, welcome, welcome. I know you would do anything to change > your needing to look for a group like this but since you did have a > need to look I'm so glad you found us.> > My name is Beth and I'm the moderator here. I'm 49 (50 in > July) and I was diagnosed just exactly 3 years ago when I was 46. I > do understand exactly how you are feeling and my diagnosis process > was in some ways similar to yours. I waited though, till I was alot > sicker to go to the hospital which I don't recommend by the way.> >> > Obviously you've been doing alot of research on the internet so > you've got a ton of information. Have you contacted the Pulmonary > Fibrosis Foundation? www.pulmonaryfibros is.org is their website. > Lots of good reliable information there. I'd also recommend reading > the archives of this board. We've been over every topic you can > imagine and you'll find lots of experiences and opinions.> > You don't mention where you are but at some point you may want to > consider being evaluated at a university medical center with an > interstitial lung disease program. If you go to www.ipfnet.org you > will find connections to 22 different 'centers of excellence' for > interstitial lung disease across the US.> > Please know that you are among friends here. We 'get it' in a way > that no one else can. Feel free to ask whatever questions come to > mind. Nothing is off limits!> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> >> >> >> >> >> > From: darlenebarry1954 <darlenebarry1954@ yahoo.com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, May 26, 2009 4:03:58 PM> > Subject: New to this board> >> >> >> > Hi,> > I have recently been diagnosed with IPF, like within the last five > weeks. I immediately went to the internet to find out all that I > could and got way more than I bargained for. I managed to freak > myself out, get angry with everyone and have cried myself to sleep a > few times. I feel so helpless. I have always been blessed with pretty > good health. No major illnesses and always strong enough to get > through just about anything. I am 55 years old and have learned that > there is very little I can do about changing other people, places and > situations but have always been able to control what is going on with > myself. I feel like my body has just turned into my head and heart's > enemy. I am married, and have a wonderfully big family with 5 kids > and 7 grandkids. You know I have been blessed. I really have no > excuse for feeling as negative as I do... it really is not like me > and I'm not loving this side of me. Acceptance is difficult. I have > only been feeling poorly> > for about six months. I started noticing that I would become a > little winded when I would climb the stairs at work (something I do > at least 5-6 times each day). My boss was concerned that it may be > something with my heart (she just experienced congestive heart > failure 4 months ago) and she keep pushing me toward the doctor until > I decided to have it checked out. Good news! My heart is in great > shape! After the nuclear stress test and before the heart > catherization, I got a terrible migraine headache and had to go to > the emergency room. They did fix the headache but after they put that > little finger oximeter on me they didn't concentrate on anything but > my O2 levels. I spent a week in the hospital being stuck and re- > stuck. I had CT, MRI's a bronchoscopy and the heart cath, as well as > what ever else they did. They made the diagnosis and sent me home on > O2, which I'm on pretty much 24/7. As long as I'm sitting quietly, > not doing anything more than> > breathing my O2 levels are ok, but if I stand the levels drop > right away. I am starting a pulmonary rehab this week, hopefully the > exercise will help me cope a little better. I have returned to work, > I have a desk job, and I carry my O2 with me. I'm hoping that I can > count on you all to remind me that it's not over until it's over and > help me feel like I do have some say in how things go.> >> > Thanks for letting me go on...> > Darlene> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Darlene my disease is responsive to prednisone -- i t is good for inflamation and has nothing to do with infection -- you need an antibiotic for infection (sorry Peggy) i started on 10 mgs prednisone when i was diagnosed and things calmed down, then moved down to 7.5 mgs for a long time when i had a flare up and a change in progression, prednisone increased to 40 mgs with positive results, each time it took a couple of weeks to see results, it doesn't happen over night then a gradual decrease, the goal was 10 mgs, never got there, had another flare up, back to 40 mgs since disease was responsive to 40 mgs, they put me on Cellcept, and now after many months, i am back down to 10 mgs prednisone yes there are side effects, but the alternative for me would be much worse than the side effects at this time Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: New to this boardTo: Breathe-Support Date: Wednesday, May 27, 2009, 1:04 PM Darlene, I know most of the long time members are holding their breath because we are going to discuss prednisone. FIRST it is the best for infection.... WORST on your body.. well my body. It does nothing for IPF. What MG are you taking ? How long have you been on it ? I'll tell you more of my experience if you want but I would NEVER recommend it for IPF.. but you need to listen to your Dr. for sure.. just be sure and ask what it is supposed to do for you and how long you will be on it. Some members have been on it for years and some like me just won't.. Anyhow I hope you don't have the side effects from it. Do you take a anti-anxiety or anti-depressant medication.. If not I am most sure you should be. It helps so much. YES YES, get an oximeter. it is the only way you know how your body is doing. One think to look out for when you are driving wear it because your sats can drop and you can pass out. Sats drop slowly when we are sitting because we are breathing shallow. people have passed out like that. I am glad you have a big family close to you. I would get ahold of Leanne and have her send you hand books and flyers and give them to family and friends to help them understand. If they will read them they will look at you in a different light. E-mail me anytime or this group is ALWAYS so helpful and someone is always here. God Bless you with strength to endure. I will be praying for you. Love and Prayers, Peggy IPF 2004, Florida Worry looks around, Sorry looks back, Faith looks up. Hi Peggy,We used to take the kids to Silver Springs when they were young. It is one of my favorite places in Florida. I do have a pulmonalogist here locally, but sometimes I get mixed messages from him. I know that I am just starting out on this part of my journey. Currently the only medication that I'm taking is Prednisone and I think that is at a lose dosage. I'm also on O2, most of the time. If I'm driving to work or seated (at work and home) I can do without it ... I think. I guess I need to buy one of those oximeters. I don't think I'm a very good judge of what my levels are. My last 6Minute walk test lasted about 45 seconds when my level drop to 84 and I couldn't get it back in the 90's. That was without O2. Before my diagnosis I would just get alittle out of breath after some kind of exhertion, but I recovered pretty quickly. I'm really having a difficult time understanding where that invisible line was that I crossed between need the supplemental O2 and not. Anyway, my doctor wants me to remain positive and hopeful and says that he is too. But sometimes I get the feeling like he is not taking this serious enough. But that is also true of how I feel about everyone sometimes. It is crazy, I don't want anyone to be concerned and at the same time I want everyone to be devastated that I'm sick. Please tell me that this is "a phase that I'm going through" and I will eventually come back to sanity. As for insurance, I currently have insurance, paid for by my employer. I have made my deductible for this year but my copay is 50% of all charges (doctor). Which basically means that my medical costs are just continuing to pile up. I am the only working person in my household. We are just barely getting by ... okay enough of that. On the plus side, my whole family is here husband, siblings, children and all of my wonderful grandchildren. My husband and I own our house and everyone at work is very supportive. I am blessed on so many levels. Help me remember this. Someone told me the other day that God's Will would not take me anywhere that His Grace could not protect me. I need to remember that as well.Darlene> >> >> > From: Beth <mbmurtha@>> > Subject: Re: New to this board> > To: Breathe-Support@ yahoogroups. com> > Date: Tuesday, May 26, 2009, 4:27 PM> >> >> >> >> >> >> >> >> >> >> >> > Darlene,> > Welcome, welcome, welcome. I know you would do anything to change > your needing to look for a group like this but since you did have a > need to look I'm so glad you found us.> > My name is Beth and I'm the moderator here. I'm 49 (50 in > July) and I was diagnosed just exactly 3 years ago when I was 46. I > do understand exactly how you are feeling and my diagnosis process > was in some ways similar to yours. I waited though, till I was alot > sicker to go to the hospital which I don't recommend by the way.> >> > Obviously you've been doing alot of research on the internet so > you've got a ton of information. Have you contacted the Pulmonary > Fibrosis Foundation? www.pulmonaryfibros is.org is their website. > Lots of good reliable information there. I'd also recommend reading > the archives of this board. We've been over every topic you can > imagine and you'll find lots of experiences and opinions.> > You don't mention where you are but at some point you may want to > consider being evaluated at a university medical center with an > interstitial lung disease program. If you go to www.ipfnet.org you > will find connections to 22 different 'centers of excellence' for > interstitial lung disease across the US.> > Please know that you are among friends here. We 'get it' in a way > that no one else can. Feel free to ask whatever questions come to > mind. Nothing is off limits!> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> >> >> >> >> >> > From: darlenebarry1954 <darlenebarry1954@ yahoo.com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, May 26, 2009 4:03:58 PM> > Subject: New to this board> >> >> >> > Hi,> > I have recently been diagnosed with IPF, like within the last five > weeks. I immediately went to the internet to find out all that I > could and got way more than I bargained for. I managed to freak > myself out, get angry with everyone and have cried myself to sleep a > few times. I feel so helpless. I have always been blessed with pretty > good health. No major illnesses and always strong enough to get > through just about anything. I am 55 years old and have learned that > there is very little I can do about changing other people, places and > situations but have always been able to control what is going on with > myself. I feel like my body has just turned into my head and heart's > enemy. I am married, and have a wonderfully big family with 5 kids > and 7 grandkids. You know I have been blessed. I really have no > excuse for feeling as negative as I do... it really is not like me > and I'm not loving this side of me. Acceptance is difficult. I have > only been feeling poorly> > for about six months. I started noticing that I would become a > little winded when I would climb the stairs at work (something I do > at least 5-6 times each day). My boss was concerned that it may be > something with my heart (she just experienced congestive heart > failure 4 months ago) and she keep pushing me toward the doctor until > I decided to have it checked out. Good news! My heart is in great > shape! After the nuclear stress test and before the heart > catherization, I got a terrible migraine headache and had to go to > the emergency room. They did fix the headache but after they put that > little finger oximeter on me they didn't concentrate on anything but > my O2 levels. I spent a week in the hospital being stuck and re- > stuck. I had CT, MRI's a bronchoscopy and the heart cath, as well as > what ever else they did. They made the diagnosis and sent me home on > O2, which I'm on pretty much 24/7. As long as I'm sitting quietly, > not doing anything more than> > breathing my O2 levels are ok, but if I stand the levels drop > right away. I am starting a pulmonary rehab this week, hopefully the > exercise will help me cope a little better. I have returned to work, > I have a desk job, and I carry my O2 with me. I'm hoping that I can > count on you all to remind me that it's not over until it's over and > help me feel like I do have some say in how things go.> >> > Thanks for letting me go on...> > Darlene> >> Quote Link to comment Share on other sites More sharing options...
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