Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 My monster is growing like mad. I am 5 years now from Dx. And am on from no 02 sitting to 8L walking around. I don't cook anymore and really not much else. I just can't stay on my feet. I have 28% of my left lung, the right one is pretty much shot.I feel really good. There is no pain to speak of except when I first sit after walking to fast or when I first lay down at night, This is just such a pain in the boooota'.. LOL I still am thanking my God for every day I am blessed with. I am sure you remember Ginger (kiss kiss) . we lost her May '07. Joyce Sept. 08.. This is really a nasty disease.We are all blessed with every day. How is your breathing ? Are you on 02? Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." HI Peggy: Yeah, I did sign off with Barb from KY. Thank you for jogging my memory. And your right about the dog. How have you been? How is it going with the lung diseaase. Have you advanced or are you staying just about the same? Really don't know what to say, except I was happy to receive your post. May God Bless You, BarbFrom: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support Sent: Friday, March 20, 2009 10:52:13 PMSubject: Re: I was a member two years ago and have come back for support and strength from all of you courageous membersHi Barb, I do remember you. I am glad you came back for comfort and to help us. You have certainly been through the mill a few times. I am so sorry. If I remember correctly you signed off Barb from Ky. Had a really cute dog..LOL am I even close?? Anyhow welcome back and Take care of you.Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Hi. My name is Barb and I was diagnosed about three years ago with IPF. Then several months later I got diagnosed with Adult Pulmonary Langerhan's Cell Histiocytosis. So, what do I have? I don't have a clue, but whatever it is it is killing me. I am on four liters of oxygen 24/7. I have developed heart problems and am on prednisone daily. I have difficulty walking a few feet without running out of breath. I just spent two months in three different hospitals and three weeks in a nursing home. I will be returning to the nursing home this coming Tuesday, because my 49 year old sister who works third shift found out it is hard to take care of someone in my shape, May God Bless her, at least she gave it a try. After one week, she is exhausted. I have read your posts and can relate to the post that talked about pain. Yes, I know what they are talking about. It is pain, but not pain. It is very scary trying to catch your breath and can't and it kinda hurts. Anyway, it is a daily thing for me to feel this kind of pain. I am gaining a lot of water weight and wondering if anyone else is blowing up like a balloon. Also, I have a lot of swelling of the feet and legs. My diabetes is out of control. I am up to three shots a day. Anybody else feel like their life has spun out of control? I joined this group to offer support to other sufferer's of this lung disease and I also joined it to get much needed support. I feel like my life is at the end and it is frightening. May God Bless You All, Barb Hi. My name is Barb and I am a 51 year old female who lives in southern Kentucky. I was a member two years ago. Now, I am back. I have had two diagnoses one is IPF and the other is Adult Pulmonary Langerhan's Cell Histiocytosis. Which one do I have? I don't have a clue. All I know is it is pretty apparent I am dying. Dummy me, quit smoking New Year's Eve of this year and about two weeks ago I smoked two cigarettes and had a big set back and am still trying to recover. I would give anything had I quit smoking when I was first diagnosed. I am on four liters of oxygen, prednisone, warfarin, heart medication and so much more. Yep, now my lungs are affecting my heart. I can't walk but a few feet and I am totally out of breath. I just spent two months in the hospital, originally admitted for my breathing or lack of, congestive heart failure, then I somehow managed to cough so much that I tore open the vessels in my lower stomach and almost died of internal bleed. I had to have several pints of blood and plasma. At least that is what they tell me. When the dr.'s found the bleed, they put me on diladah (not sure of the spelling, but it is a strong pain killer given to me in my IV). So, most of what I know about the bleed is hearsay. After being in three different hospitals (transferred from one to the other), I spent twenty days in the nursing home doing rehabilitation, because my legs became so weak from lying on my back that I had to get the strength back in them so I could walk. Now, I am living with my 49 year old sister who works third shift and who has decided after a week with me being here, that I am just to much to care for, so I am being readmitted to the nursing home this coming Tuesday. There I will be until I die. I read your posts and can relate to the pain thing. That is all I know to call it is pain. It is pain , but it isn't pain. It is kinda smothering with the sense of pressure on my chest. I am having tremendous difficulty with water weight. Is anyone else blowing up like a balloon? Also, I am having memory problems. I can't even remember what my screen name was when I was in this group last. Anyone else having memory problems? I joined this group to get encouragement to go on, I also want to provide encouragement to others. So, please feel free to ask me questions or offer me advice. May God Bless You All, Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 My monster is growing like mad. I am 5 years now from Dx. And am on from no 02 sitting to 8L walking around. I don't cook anymore and really not much else. I just can't stay on my feet. I have 28% of my left lung, the right one is pretty much shot.I feel really good. There is no pain to speak of except when I first sit after walking to fast or when I first lay down at night, This is just such a pain in the boooota'.. LOL I still am thanking my God for every day I am blessed with. I am sure you remember Ginger (kiss kiss) . we lost her May '07. Joyce Sept. 08.. This is really a nasty disease.We are all blessed with every day. How is your breathing ? Are you on 02? Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." HI Peggy: Yeah, I did sign off with Barb from KY. Thank you for jogging my memory. And your right about the dog. How have you been? How is it going with the lung diseaase. Have you advanced or are you staying just about the same? Really don't know what to say, except I was happy to receive your post. May God Bless You, BarbFrom: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support Sent: Friday, March 20, 2009 10:52:13 PMSubject: Re: I was a member two years ago and have come back for support and strength from all of you courageous membersHi Barb, I do remember you. I am glad you came back for comfort and to help us. You have certainly been through the mill a few times. I am so sorry. If I remember correctly you signed off Barb from Ky. Had a really cute dog..LOL am I even close?? Anyhow welcome back and Take care of you.Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Hi. My name is Barb and I was diagnosed about three years ago with IPF. Then several months later I got diagnosed with Adult Pulmonary Langerhan's Cell Histiocytosis. So, what do I have? I don't have a clue, but whatever it is it is killing me. I am on four liters of oxygen 24/7. I have developed heart problems and am on prednisone daily. I have difficulty walking a few feet without running out of breath. I just spent two months in three different hospitals and three weeks in a nursing home. I will be returning to the nursing home this coming Tuesday, because my 49 year old sister who works third shift found out it is hard to take care of someone in my shape, May God Bless her, at least she gave it a try. After one week, she is exhausted. I have read your posts and can relate to the post that talked about pain. Yes, I know what they are talking about. It is pain, but not pain. It is very scary trying to catch your breath and can't and it kinda hurts. Anyway, it is a daily thing for me to feel this kind of pain. I am gaining a lot of water weight and wondering if anyone else is blowing up like a balloon. Also, I have a lot of swelling of the feet and legs. My diabetes is out of control. I am up to three shots a day. Anybody else feel like their life has spun out of control? I joined this group to offer support to other sufferer's of this lung disease and I also joined it to get much needed support. I feel like my life is at the end and it is frightening. May God Bless You All, Barb Hi. My name is Barb and I am a 51 year old female who lives in southern Kentucky. I was a member two years ago. Now, I am back. I have had two diagnoses one is IPF and the other is Adult Pulmonary Langerhan's Cell Histiocytosis. Which one do I have? I don't have a clue. All I know is it is pretty apparent I am dying. Dummy me, quit smoking New Year's Eve of this year and about two weeks ago I smoked two cigarettes and had a big set back and am still trying to recover. I would give anything had I quit smoking when I was first diagnosed. I am on four liters of oxygen, prednisone, warfarin, heart medication and so much more. Yep, now my lungs are affecting my heart. I can't walk but a few feet and I am totally out of breath. I just spent two months in the hospital, originally admitted for my breathing or lack of, congestive heart failure, then I somehow managed to cough so much that I tore open the vessels in my lower stomach and almost died of internal bleed. I had to have several pints of blood and plasma. At least that is what they tell me. When the dr.'s found the bleed, they put me on diladah (not sure of the spelling, but it is a strong pain killer given to me in my IV). So, most of what I know about the bleed is hearsay. After being in three different hospitals (transferred from one to the other), I spent twenty days in the nursing home doing rehabilitation, because my legs became so weak from lying on my back that I had to get the strength back in them so I could walk. Now, I am living with my 49 year old sister who works third shift and who has decided after a week with me being here, that I am just to much to care for, so I am being readmitted to the nursing home this coming Tuesday. There I will be until I die. I read your posts and can relate to the pain thing. That is all I know to call it is pain. It is pain , but it isn't pain. It is kinda smothering with the sense of pressure on my chest. I am having tremendous difficulty with water weight. Is anyone else blowing up like a balloon? Also, I am having memory problems. I can't even remember what my screen name was when I was in this group last. Anyone else having memory problems? I joined this group to get encouragement to go on, I also want to provide encouragement to others. So, please feel free to ask me questions or offer me advice. May God Bless You All, Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 Peggy I see the two sides of Peggy and think of them in every post, because they are so indicative of the good lives we can all still have. On one side you have the increased use of oxygen and the limited mobility. Your physical condition is what it is. You had the one set back this winter in which you finally got yourself to where you needed to be for a quick fixer upper. But on the other side, you enjoy life with family and friends. You hug like a kid. You interact with your air family. You invite company to visit. And you made San last year and Orlando this year and if I know you there was no one enjoying it more. Now the way you are winning every day is that you're letting the second side be the dominant one, because its the real you and the only one you can control. Good going huggy Peggy. > > > Hi. My name is Barb and I was diagnosed about three years ago with > IPF. Then several months later I got diagnosed with Adult Pulmonary > Langerhan's Cell Histiocytosis. So, what do I have? I don't have a > clue, but whatever it is it is killing me. I am on four liters of > oxygen 24/7. I have developed heart problems and am on prednisone > daily. I have difficulty walking a few feet without running out of > breath. I just spent two months in three different hospitals and > three weeks in a nursing home. I will be returning to the nursing > home this coming Tuesday, because my 49 year old sister who works > third shift found out it is hard to take care of someone in my > shape, May God Bless her, at least she gave it a try. After one > week, she is exhausted. > > I have read your posts and can relate to the post that talked about > pain. Yes, I know what they are talking about. It is pain, but not > pain. It is very scary trying to catch your breath and can't and it > kinda hurts. Anyway, it is a daily thing for me to feel this kind of > pain. > > I am gaining a lot of water weight and wondering if anyone else is > blowing up like a balloon. Also, I have a lot of swelling of the > feet and legs. My diabetes is out of control. I am up to three > shots a day. Anybody else feel like their life has spun out of control? > > I joined this group to offer support to other sufferer's of this lung > disease and I also joined it to get much needed support. I feel like > my life is at the end and it is frightening. > > May God Bless You All, > > Barb > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi. My name is Barb and I am a 51 year old female who lives in > southern Kentucky. I was a member two years ago. Now, I am back. > I have had two diagnoses one is IPF and the other is Adult Pulmonary > Langerhan's Cell Histiocytosis. Which one do I have? I don't have a > clue. All I know is it is pretty apparent I am dying. Dummy me, > quit smoking New Year's Eve of this year and about two weeks ago I > smoked two cigarettes and had a big set back and am still trying to > recover. I would give anything had I quit smoking when I was first > diagnosed. > > I am on four liters of oxygen, prednisone, warfarin, heart medication > and so much more. Yep, now my lungs are affecting my heart. I > can't walk but a few feet and I am totally out of breath. I just > spent two months in the hospital, originally admitted for my > breathing or lack of, congestive heart failure, then I somehow > managed to cough so much that I tore open the vessels in my lower > stomach and almost died of internal bleed. I had to have several > pints of blood and plasma. At least that is what they tell me. When > the dr.'s found the bleed, they put me on diladah (not sure of the > spelling, but it is a strong pain killer given to me in my IV). > So, most of what I know about the bleed is hearsay. After being in > three different hospitals (transferred from one to the other), I > spent twenty days in the nursing home doing rehabilitation, because > my legs became so weak from lying on my back that I had to get the > strength back in them so I could walk. Now, I am living with my 49 > year old sister who works third shift and who has decided after a > week with me being here, that I am just to much to care for, so I am > being readmitted to the nursing home this coming Tuesday. There I > will be until I die. > > I read your posts and can relate to the pain thing. That is all I > know to call it is pain. It is pain , but it isn't pain. It is > kinda smothering with the sense of pressure on my chest. > > I am having tremendous difficulty with water weight. Is anyone else > blowing up like a balloon? Also, I am having memory problems. I > can't even remember what my screen name was when I was in this group > last. Anyone else having memory problems? > > I joined this group to get encouragement to go on, I also want to > provide encouragement to others. So, please feel free to ask me > questions or offer me advice. > > May God Bless You All, > > Barb > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 Peggy, Whether you know it or not, you are able to help us in this Air Family. Everytime I read your posts it helps me. Meeting you last weekend helped alot too. You inspire many of us to keep on keeping on. It's so easy sometimes to give in to the dark side of IPF. I've been pretty guilty of having thos " woe is me " moments lately. Your energy and positive outlook help remind me to look on the brighter side. FL IPF dx 1/06 > > > > > > Hi. My name is Barb and I was diagnosed about three years ago with > > IPF. Then several months later I got diagnosed with Adult Pulmonary > > Langerhan's Cell Histiocytosis. So, what do I have? I don't have a > > clue, but whatever it is it is killing me. I am on four liters of > > oxygen 24/7. I have developed heart problems and am on prednisone > > daily. I have difficulty walking a few feet without running out of > > breath. I just spent two months in three different hospitals and > > three weeks in a nursing home. I will be returning to the nursing > > home this coming Tuesday, because my 49 year old sister who works > > third shift found out it is hard to take care of someone in my > > shape, May God Bless her, at least she gave it a try. After one > > week, she is exhausted. > > > > I have read your posts and can relate to the post that talked about > > pain. Yes, I know what they are talking about. It is pain, but not > > pain. It is very scary trying to catch your breath and can't and it > > kinda hurts. Anyway, it is a daily thing for me to feel this kind of > > pain. > > > > I am gaining a lot of water weight and wondering if anyone else is > > blowing up like a balloon. Also, I have a lot of swelling of the > > feet and legs. My diabetes is out of control. I am up to three > > shots a day. Anybody else feel like their life has spun out of > control? > > > > I joined this group to offer support to other sufferer's of this lung > > disease and I also joined it to get much needed support. I feel like > > my life is at the end and it is frightening. > > > > May God Bless You All, > > > > Barb > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi. My name is Barb and I am a 51 year old female who lives in > > southern Kentucky. I was a member two years ago. Now, I am back. > > I have had two diagnoses one is IPF and the other is Adult Pulmonary > > Langerhan's Cell Histiocytosis. Which one do I have? I don't have a > > clue. All I know is it is pretty apparent I am dying. Dummy me, > > quit smoking New Year's Eve of this year and about two weeks ago I > > smoked two cigarettes and had a big set back and am still trying to > > recover. I would give anything had I quit smoking when I was first > > diagnosed. > > > > I am on four liters of oxygen, prednisone, warfarin, heart medication > > and so much more. Yep, now my lungs are affecting my heart. I > > can't walk but a few feet and I am totally out of breath. I just > > spent two months in the hospital, originally admitted for my > > breathing or lack of, congestive heart failure, then I somehow > > managed to cough so much that I tore open the vessels in my lower > > stomach and almost died of internal bleed. I had to have several > > pints of blood and plasma. At least that is what they tell me. When > > the dr.'s found the bleed, they put me on diladah (not sure of the > > spelling, but it is a strong pain killer given to me in my IV). > > So, most of what I know about the bleed is hearsay. After being in > > three different hospitals (transferred from one to the other), I > > spent twenty days in the nursing home doing rehabilitation, because > > my legs became so weak from lying on my back that I had to get the > > strength back in them so I could walk. Now, I am living with my 49 > > year old sister who works third shift and who has decided after a > > week with me being here, that I am just to much to care for, so I am > > being readmitted to the nursing home this coming Tuesday. There I > > will be until I die. > > > > I read your posts and can relate to the pain thing. That is all I > > know to call it is pain. It is pain , but it isn't pain. It is > > kinda smothering with the sense of pressure on my chest. > > > > I am having tremendous difficulty with water weight. Is anyone else > > blowing up like a balloon? Also, I am having memory problems. I > > can't even remember what my screen name was when I was in this group > > last. Anyone else having memory problems? > > > > I joined this group to get encouragement to go on, I also want to > > provide encouragement to others. So, please feel free to ask me > > questions or offer me advice. > > > > May God Bless You All, > > > > Barb > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 Peggy, Whether you know it or not, you are able to help us in this Air Family. Everytime I read your posts it helps me. Meeting you last weekend helped alot too. You inspire many of us to keep on keeping on. It's so easy sometimes to give in to the dark side of IPF. I've been pretty guilty of having thos " woe is me " moments lately. Your energy and positive outlook help remind me to look on the brighter side. FL IPF dx 1/06 > > > > > > Hi. My name is Barb and I was diagnosed about three years ago with > > IPF. Then several months later I got diagnosed with Adult Pulmonary > > Langerhan's Cell Histiocytosis. So, what do I have? I don't have a > > clue, but whatever it is it is killing me. I am on four liters of > > oxygen 24/7. I have developed heart problems and am on prednisone > > daily. I have difficulty walking a few feet without running out of > > breath. I just spent two months in three different hospitals and > > three weeks in a nursing home. I will be returning to the nursing > > home this coming Tuesday, because my 49 year old sister who works > > third shift found out it is hard to take care of someone in my > > shape, May God Bless her, at least she gave it a try. After one > > week, she is exhausted. > > > > I have read your posts and can relate to the post that talked about > > pain. Yes, I know what they are talking about. It is pain, but not > > pain. It is very scary trying to catch your breath and can't and it > > kinda hurts. Anyway, it is a daily thing for me to feel this kind of > > pain. > > > > I am gaining a lot of water weight and wondering if anyone else is > > blowing up like a balloon. Also, I have a lot of swelling of the > > feet and legs. My diabetes is out of control. I am up to three > > shots a day. Anybody else feel like their life has spun out of > control? > > > > I joined this group to offer support to other sufferer's of this lung > > disease and I also joined it to get much needed support. I feel like > > my life is at the end and it is frightening. > > > > May God Bless You All, > > > > Barb > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi. My name is Barb and I am a 51 year old female who lives in > > southern Kentucky. I was a member two years ago. Now, I am back. > > I have had two diagnoses one is IPF and the other is Adult Pulmonary > > Langerhan's Cell Histiocytosis. Which one do I have? I don't have a > > clue. All I know is it is pretty apparent I am dying. Dummy me, > > quit smoking New Year's Eve of this year and about two weeks ago I > > smoked two cigarettes and had a big set back and am still trying to > > recover. I would give anything had I quit smoking when I was first > > diagnosed. > > > > I am on four liters of oxygen, prednisone, warfarin, heart medication > > and so much more. Yep, now my lungs are affecting my heart. I > > can't walk but a few feet and I am totally out of breath. I just > > spent two months in the hospital, originally admitted for my > > breathing or lack of, congestive heart failure, then I somehow > > managed to cough so much that I tore open the vessels in my lower > > stomach and almost died of internal bleed. I had to have several > > pints of blood and plasma. At least that is what they tell me. When > > the dr.'s found the bleed, they put me on diladah (not sure of the > > spelling, but it is a strong pain killer given to me in my IV). > > So, most of what I know about the bleed is hearsay. After being in > > three different hospitals (transferred from one to the other), I > > spent twenty days in the nursing home doing rehabilitation, because > > my legs became so weak from lying on my back that I had to get the > > strength back in them so I could walk. Now, I am living with my 49 > > year old sister who works third shift and who has decided after a > > week with me being here, that I am just to much to care for, so I am > > being readmitted to the nursing home this coming Tuesday. There I > > will be until I die. > > > > I read your posts and can relate to the pain thing. That is all I > > know to call it is pain. It is pain , but it isn't pain. It is > > kinda smothering with the sense of pressure on my chest. > > > > I am having tremendous difficulty with water weight. Is anyone else > > blowing up like a balloon? Also, I am having memory problems. I > > can't even remember what my screen name was when I was in this group > > last. Anyone else having memory problems? > > > > I joined this group to get encouragement to go on, I also want to > > provide encouragement to others. So, please feel free to ask me > > questions or offer me advice. > > > > May God Bless You All, > > > > Barb > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.