Guest guest Posted May 26, 2009 Report Share Posted May 26, 2009 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.pulmonaryfibrosis.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 To: Breathe-Support Sent: Tuesday, May 26, 2009 4:03:58 PMSubject: 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 26, 2009 Report Share Posted May 26, 2009 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.pulmonaryfibrosis.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 To: Breathe-Support Sent: Tuesday, May 26, 2009 4:03:58 PMSubject: 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 26, 2009 Report Share Posted May 26, 2009 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.pulmonaryfibrosis.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 To: Breathe-Support Sent: Tuesday, May 26, 2009 4:03:58 PMSubject: 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 26, 2009 Report Share Posted May 26, 2009 Welcome to our board Darlene... there is too much to tell you in one email but know that you are in the best place you can be as we share this common disease. Many of us here, including me, found out about PF on the net and it was a hell of a shock to read it is fatal. However, as Peggy says, we don't have an expiration date stamped on our fannies'. None of us progress the same way or in the same time frame....I was dx (diagnosed) March 2006 and have remained fairly stable since with a couple dips in progression... Because we are all different in our progression we are so much help to each other. Go to the Files section on the home page and there is lots of info there. And as you get more familiar, there are even Photos you can check out...from the home page... I'm sure your family is concerned and all you can do is keep them informed (for those old enough to understand). I thought I was just out of shape and overweight when I had my sob (shortness of breath) checked out. Don't berate yourself for feeling 'negative's. My golly girl, you have just learned about a shock of a disease. Most of us here have an "Oximeter" and it's used to check the pulse/O2 in the blood. They can be purchased online for $65, the best price anyplace and that's where we buy ours. The yellow one, it's FDA approved. www.portablenebs.com. Right from the get-go, know you always have the say in what and how you are treated. One thing we learn here early is to be our own best advocate and make a list of questions for the doc. We'll get through this together. There is always someone to answer your questions. Don't hesitate to ask them. In what State do you live? MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! 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 26, 2009 Report Share Posted May 26, 2009 Darlene, Welcome to our " Air Family " . I'm fairly new myself. But, I can tell you this ..... the best people in the whole world are right here. I, too, have cried myself to sleep. This awful diesease is frightening for sure. But, I've found that even on the days that I don't feel up to posting, someone always seems to post something that gives me a smile or lifts my spirits somehow. There are people here that are in all stages of progression. You'll find that there's really nothing that one or more of us hasn't gone through. Beth is right. The people here " get it " and that in itself is a wonderful thing. Just to know someone understands through personal experience. Where do you live? Nan 49, MASS list started in '82 PF '08 Asthma '09 > > 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.pulmonaryfibrosis.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 > To: Breathe-Support > 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 26, 2009 Report Share Posted May 26, 2009 Darlene, Welcome to our " Air Family " . I'm fairly new myself. But, I can tell you this ..... the best people in the whole world are right here. I, too, have cried myself to sleep. This awful diesease is frightening for sure. But, I've found that even on the days that I don't feel up to posting, someone always seems to post something that gives me a smile or lifts my spirits somehow. There are people here that are in all stages of progression. You'll find that there's really nothing that one or more of us hasn't gone through. Beth is right. The people here " get it " and that in itself is a wonderful thing. Just to know someone understands through personal experience. Where do you live? Nan 49, MASS list started in '82 PF '08 Asthma '09 > > 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.pulmonaryfibrosis.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 > To: Breathe-Support > 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 26, 2009 Report Share Posted May 26, 2009 Darlene, Welcome to our " Air Family " . I'm fairly new myself. But, I can tell you this ..... the best people in the whole world are right here. I, too, have cried myself to sleep. This awful diesease is frightening for sure. But, I've found that even on the days that I don't feel up to posting, someone always seems to post something that gives me a smile or lifts my spirits somehow. There are people here that are in all stages of progression. You'll find that there's really nothing that one or more of us hasn't gone through. Beth is right. The people here " get it " and that in itself is a wonderful thing. Just to know someone understands through personal experience. Where do you live? Nan 49, MASS list started in '82 PF '08 Asthma '09 > > 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.pulmonaryfibrosis.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 > To: Breathe-Support > 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 26, 2009 Report Share Posted May 26, 2009 darlene welcome to the board, sorry you need us but glad you found us, your story is similar to most of our stories you do have a right to be angry, if you need a place to vent, this is it, we understand, we have been, we continue to be there if you need practical tips, you will find them here after you wrote about climbing the stairs at work, i remembered how sob i used to get, thinking it was being out of shape and family history of heart disease was extremely surprised when er ruled out heart disease never heard of ipf went on internet and freaked out that was 3 years ago, i'm still here reading posts and typing responses i think the weirdest thing about this disease is that you can sit with normal O2 SATs, but as soon as you move, it drops most of us have our own oximeters do you go to a teaching hospital? one that has a department specializing in ILD's? Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: New to this boardTo: Breathe-Support Date: Tuesday, May 26, 2009, 4:03 PM 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 26, 2009 Report Share Posted May 26, 2009 darlene welcome to the board, sorry you need us but glad you found us, your story is similar to most of our stories you do have a right to be angry, if you need a place to vent, this is it, we understand, we have been, we continue to be there if you need practical tips, you will find them here after you wrote about climbing the stairs at work, i remembered how sob i used to get, thinking it was being out of shape and family history of heart disease was extremely surprised when er ruled out heart disease never heard of ipf went on internet and freaked out that was 3 years ago, i'm still here reading posts and typing responses i think the weirdest thing about this disease is that you can sit with normal O2 SATs, but as soon as you move, it drops most of us have our own oximeters do you go to a teaching hospital? one that has a department specializing in ILD's? Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: New to this boardTo: Breathe-Support Date: Tuesday, May 26, 2009, 4:03 PM 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 26, 2009 Report Share Posted May 26, 2009 Beth reading your response to Darlene tells me that you are feeling a lot better -- 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: 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. comSent: Tuesday, May 26, 2009 4:03:58 PMSubject: 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 26, 2009 Report Share Posted May 26, 2009 Beth reading your response to Darlene tells me that you are feeling a lot better -- 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: 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. comSent: Tuesday, May 26, 2009 4:03:58 PMSubject: 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 26, 2009 Report Share Posted May 26, 2009 Darlene, Welcome to our air family. I'm sure you will experience the same support so many of us have by joining this group. We are made up of many individuals that understand us like so many others never will. I'm glad to read that you have been learning more about our nasty disease and educating yourself. It's natural to feel scared, alone, and angry. Keep in mind you all us to turn to. Better breathin' to ya, 33 FL IPF dx 1/06 > > 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 26, 2009 Report Share Posted May 26, 2009 Darlene, Welcome to our air family. I'm sure you will experience the same support so many of us have by joining this group. We are made up of many individuals that understand us like so many others never will. I'm glad to read that you have been learning more about our nasty disease and educating yourself. It's natural to feel scared, alone, and angry. Keep in mind you all us to turn to. Better breathin' to ya, 33 FL IPF dx 1/06 > > 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 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 > 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 > 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 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 > 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 > 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 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 > > 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 > > 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, Welcome to the family, I was new to this board just a few months ago, Not so new to IPF. I was diagnosed in 2002 and have been on o2 24/7 since November of 2007. I actually have two concentrators, a 10L at home and a 5L at work. I have a desk job also but draging the portable to the copy machine, etc was just too much of a pain and filling the portable too demanding. Im on a fairly high liter flow and was lucky my insurance paid for the 2nd concentrator. Course its not like I can just stop using it This is a wonderful group of people who have more knowledge about this disease than half our doctors. You are in the right place. You sound so much like me. I was the family organizer, the one who replaced faucets and stripped wall paper or dropped everything to help babysit the grandkids. Now I have to ask for their help and its very very hard.Live every day with those kids and grandkids cuz we never git them back. I really really helps that everyone here "gets it" and if you are having a bad day or a good day we all care.Dyane Phoenix Diabetes, Fibromyalgia, Lipodermatosclerosis, Breast Cancer, IPF 02>> 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, Welcome to the family, I was new to this board just a few months ago, Not so new to IPF. I was diagnosed in 2002 and have been on o2 24/7 since November of 2007. I actually have two concentrators, a 10L at home and a 5L at work. I have a desk job also but draging the portable to the copy machine, etc was just too much of a pain and filling the portable too demanding. Im on a fairly high liter flow and was lucky my insurance paid for the 2nd concentrator. Course its not like I can just stop using it This is a wonderful group of people who have more knowledge about this disease than half our doctors. You are in the right place. You sound so much like me. I was the family organizer, the one who replaced faucets and stripped wall paper or dropped everything to help babysit the grandkids. Now I have to ask for their help and its very very hard.Live every day with those kids and grandkids cuz we never git them back. I really really helps that everyone here "gets it" and if you are having a bad day or a good day we all care.Dyane Phoenix Diabetes, Fibromyalgia, Lipodermatosclerosis, Breast Cancer, IPF 02>> 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, Welcome to the family, I was new to this board just a few months ago, Not so new to IPF. I was diagnosed in 2002 and have been on o2 24/7 since November of 2007. I actually have two concentrators, a 10L at home and a 5L at work. I have a desk job also but draging the portable to the copy machine, etc was just too much of a pain and filling the portable too demanding. Im on a fairly high liter flow and was lucky my insurance paid for the 2nd concentrator. Course its not like I can just stop using it This is a wonderful group of people who have more knowledge about this disease than half our doctors. You are in the right place. You sound so much like me. I was the family organizer, the one who replaced faucets and stripped wall paper or dropped everything to help babysit the grandkids. Now I have to ask for their help and its very very hard.Live every day with those kids and grandkids cuz we never git them back. I really really helps that everyone here "gets it" and if you are having a bad day or a good day we all care.Dyane Phoenix Diabetes, Fibromyalgia, Lipodermatosclerosis, Breast Cancer, IPF 02>> 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 28, 2009 Report Share Posted May 28, 2009 > > 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 > Dear Darlene, I read your letter and felt a little like I was reading about myself. I'm newly diagnosed-though have been having exercise or stress induced shortness of breath for about 6 months. My new doctor sent me for a stress test-my heart was fine but when walking up a hill on the treadmill my pulse ox dropped down in the 80's. I compensated shortly afterward, and he pushed me to check it all again on the treadmill and it did the same thing. The next thing ordered was a PFT, which I did poorly with. After that a high resolution chest CT, which confirmed the finding of pulmonary fibrosis. I've seen a local pulmonologist. He wants me to see Chapman, a lung specialist at Cleveland Clinic Foundation in Cleveland, OH. He also said to have a bronchoscopy and biopsy if he orders it. Needless to say I feel stunned with all this information, overwhelmed to the point that I can ony read so much about this disease and then I have to back off. I think that is self preservation. I'm 53 and I would like it if this would all go away. I want to live a long and happy life. I have grandchildren and more hopefully on the way. I want to see my daughter get married. I've had Sjogren's for about 13 years-with eye and mouth dryness and arthritis aches head to toe, treated with Placquenil and Prednisone. I've been able to live with that, but I never dreamed this would happen. We don't have any history of this in my family. Now to top it off, I have to have a thyroid biopsy, and possible thyroidectomy. I've been treating hyperthyroidism with Tapazole for one year. The CT showed increased nodules on my thyroid. To me it seems the finger is pointing at Sjogren's as the culprit, whether that information will benefit me or not time will tell. Some days are better than others. I'm not on O2. My six minute walk test I stayed in the high 90's. I'm not bragging, I'm curious how much time I have left at this level. I'm thankful for all the information that the group is providing. I still have not told my kids. My husband and brother know. So thanks for any new information in advance. Patti s Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2009 Report Share Posted May 28, 2009 > > 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 > Dear Darlene, I read your letter and felt a little like I was reading about myself. I'm newly diagnosed-though have been having exercise or stress induced shortness of breath for about 6 months. My new doctor sent me for a stress test-my heart was fine but when walking up a hill on the treadmill my pulse ox dropped down in the 80's. I compensated shortly afterward, and he pushed me to check it all again on the treadmill and it did the same thing. The next thing ordered was a PFT, which I did poorly with. After that a high resolution chest CT, which confirmed the finding of pulmonary fibrosis. I've seen a local pulmonologist. He wants me to see Chapman, a lung specialist at Cleveland Clinic Foundation in Cleveland, OH. He also said to have a bronchoscopy and biopsy if he orders it. Needless to say I feel stunned with all this information, overwhelmed to the point that I can ony read so much about this disease and then I have to back off. I think that is self preservation. I'm 53 and I would like it if this would all go away. I want to live a long and happy life. I have grandchildren and more hopefully on the way. I want to see my daughter get married. I've had Sjogren's for about 13 years-with eye and mouth dryness and arthritis aches head to toe, treated with Placquenil and Prednisone. I've been able to live with that, but I never dreamed this would happen. We don't have any history of this in my family. Now to top it off, I have to have a thyroid biopsy, and possible thyroidectomy. I've been treating hyperthyroidism with Tapazole for one year. The CT showed increased nodules on my thyroid. To me it seems the finger is pointing at Sjogren's as the culprit, whether that information will benefit me or not time will tell. Some days are better than others. I'm not on O2. My six minute walk test I stayed in the high 90's. I'm not bragging, I'm curious how much time I have left at this level. I'm thankful for all the information that the group is providing. I still have not told my kids. My husband and brother know. So thanks for any new information in advance. Patti s Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2009 Report Share Posted May 28, 2009 > > 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 > Dear Darlene, I read your letter and felt a little like I was reading about myself. I'm newly diagnosed-though have been having exercise or stress induced shortness of breath for about 6 months. My new doctor sent me for a stress test-my heart was fine but when walking up a hill on the treadmill my pulse ox dropped down in the 80's. I compensated shortly afterward, and he pushed me to check it all again on the treadmill and it did the same thing. The next thing ordered was a PFT, which I did poorly with. After that a high resolution chest CT, which confirmed the finding of pulmonary fibrosis. I've seen a local pulmonologist. He wants me to see Chapman, a lung specialist at Cleveland Clinic Foundation in Cleveland, OH. He also said to have a bronchoscopy and biopsy if he orders it. Needless to say I feel stunned with all this information, overwhelmed to the point that I can ony read so much about this disease and then I have to back off. I think that is self preservation. I'm 53 and I would like it if this would all go away. I want to live a long and happy life. I have grandchildren and more hopefully on the way. I want to see my daughter get married. I've had Sjogren's for about 13 years-with eye and mouth dryness and arthritis aches head to toe, treated with Placquenil and Prednisone. I've been able to live with that, but I never dreamed this would happen. We don't have any history of this in my family. Now to top it off, I have to have a thyroid biopsy, and possible thyroidectomy. I've been treating hyperthyroidism with Tapazole for one year. The CT showed increased nodules on my thyroid. To me it seems the finger is pointing at Sjogren's as the culprit, whether that information will benefit me or not time will tell. Some days are better than others. I'm not on O2. My six minute walk test I stayed in the high 90's. I'm not bragging, I'm curious how much time I have left at this level. I'm thankful for all the information that the group is providing. I still have not told my kids. My husband and brother know. So thanks for any new information in advance. Patti s Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2009 Report Share Posted May 28, 2009 Hi Darlene, I'm in Palm Coast. I see Dr. Augustine Lee at Mayo Clinic in ville. It's just over an hour north of me. I'm not sure how far south of Daytona you are but, the 2 closest places from here are Shands Gainsvile and Mayo Clinic Jax. Speaking financially, Shands has a better reputation of working with the patients and their insurance. Mayo Clinic seldom reduces their charges unless you quilify for their assistance program. Both hospitals have assistance programs that you can apply for. Mayo's paperwork can be found on their website. They also have a list on their site of insurances they " cooperate " with. Mine doesn't happen to be one of them and I was denied financial assistance. I won't bother you with the nasty details of my medical debt as I have been sickly for many years. I had to quit my job as a Realtor 2 years ago. I've been on O2 for just over 2 years. I've had PF for a very long time but was only properly diagnosed in Jan. 2006. I have been fortunate to have good insurance under my husband's employer. Thankfully I will have Medicare as of Monday June 1 in addition to my existing insurance. It's normal to feel overwhelmed this early after your diagnosis. Best wishes, 33 FL IPF dx 1/06 > > > > > > > > > From: Beth > > > 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 > > > 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 28, 2009 Report Share Posted May 28, 2009 Hi Darlene, I'm in Palm Coast. I see Dr. Augustine Lee at Mayo Clinic in ville. It's just over an hour north of me. I'm not sure how far south of Daytona you are but, the 2 closest places from here are Shands Gainsvile and Mayo Clinic Jax. Speaking financially, Shands has a better reputation of working with the patients and their insurance. Mayo Clinic seldom reduces their charges unless you quilify for their assistance program. Both hospitals have assistance programs that you can apply for. Mayo's paperwork can be found on their website. They also have a list on their site of insurances they " cooperate " with. Mine doesn't happen to be one of them and I was denied financial assistance. I won't bother you with the nasty details of my medical debt as I have been sickly for many years. I had to quit my job as a Realtor 2 years ago. I've been on O2 for just over 2 years. I've had PF for a very long time but was only properly diagnosed in Jan. 2006. I have been fortunate to have good insurance under my husband's employer. Thankfully I will have Medicare as of Monday June 1 in addition to my existing insurance. It's normal to feel overwhelmed this early after your diagnosis. Best wishes, 33 FL IPF dx 1/06 > > > > > > > > > From: Beth > > > 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 > > > 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 29, 2009 Report Share Posted May 29, 2009 Hi , I live in New Smyrna Beach on the beachside and I work in Ormond Beach. Your are actually very close in Palm Coast. ville is very close to me as well. I have yet to make a decision as to searching out another doctor or hospital. My head is swimming with too much / not enough information. Today I'm tired! As I said I work, and I need to do that for as long as I can as I'm the only one working in my household and what little insurance I have is paid for by my employer. My job doesn't pay well, but it is 40 hours a week and that pays a few of my bills and buys my gas to get back to work. I also receive 40 hours of sick time and a weeks paid vacation (both used up with my recent hospital vacation). I will try to look at Mayo's website for information this weekend. I've been told that I need to start the process of applying for social security disability just in case. Again, sometimes I'm just too tired to think about all of this. Sometimes I feel like I really don't need this O2, other times, like today, I just want to sit down and crank it up! This group has already helped me so much. I intend to stay as active with you all as I can. Unfortunately when my husband's business went bust a couple of years ago we had to give up our cable and my internet. I either have to visit you all while I'm at work (there's another benefit of my job), or make a trip to the library. I will try to check in again this weekend. Darlene > > > > > > > > > > > > From: Beth > > > > 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 > > > > 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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