Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 Hi Everybody,The nursing home I am at just installed this computer for residents to use. I am so glad I got a lifeline to this group again. Let me introduce myself. My name is Barb and I live in Southern Kentucky. I have been diagnosed with pulmonary fibrosis by one specialist and Adult Pulmonary Langerhan's Cell Histiocytosis by another specialist and this is with them looking at a speciman of my luing after having an open lung biopsy. All I know is that I am very sick and I am dying. It seems this year I have spent more time in the hospital than out of it. I am not able to care for myself like cooking, cleaning, bathing, and the sorts. I am on five liters of oxygen and my lung dr. had me sign DNR papers my last hospital visit. I have been living in this nursing home, for the most part, since March of this year. Praise God for this place. They take care of my basic needs and God takes care of the rest,Anyone that knows me please respond to my post. It would feel so good to hear from you and anyone who would like to get to know me, please respond to my post.Barb from Kentucky To: Breathe-Support Sent: Saturday, March 21, 2009 9:38:04 AMSubject: Re: Barb KyMy 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, Peggy Florida, 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, Barb From: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support@ yahoogroups. comSent: 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, Peggy Florida, 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 September 10, 2009 Report Share Posted September 10, 2009 Barb Hi THERE YOU.. Oh it is indeed good to hear from you. I am not sure you will remember me, Peggy from Florida. I am not sure how many are here from the time you were here before. Leanne is now the Executive Administrator for the Pulmonary Fibrosis Foundation. Pink Joyce is here and the others will have to chime in. I have wondered about you so many times. I think the last time we heard from you, you were just getting ready to go to the nursing home. I am so glad you are getting good care. Keep in touch. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Hi Everybody,The nursing home I am at just installed this computer for residents to use. I am so glad I got a lifeline to this group again. Let me introduce myself. My name is Barb and I live in Southern Kentucky. I have been diagnosed with pulmonary fibrosis by one specialist and Adult Pulmonary Langerhan's Cell Histiocytosis by another specialist and this is with them looking at a speciman of my luing after having an open lung biopsy. All I know is that I am very sick and I am dying. It seems this year I have spent more time in the hospital than out of it. I am not able to care for myself like cooking, cleaning, bathing, and the sorts. I am on five liters of oxygen and my lung dr. had me sign DNR papers my last hospital visit. I have been living in this nursing home, for the most part, since March of this year. Praise God for this place. They take care of my basic needs and God takes care of the rest,Anyone that knows me please respond to my post. It would feel so good to hear from you and anyone who would like to get to know me, please respond to my post.Barb from Kentucky From: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support Sent: Saturday, March 21, 2009 9:38:04 AMSubject: Re: Barb KyMy 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, Peggy Florida, 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, Barb From: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support@ yahoogroups. comSent: 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, Peggy Florida, 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 September 10, 2009 Report Share Posted September 10, 2009 Hi Barb,I remember you from months ago.  I am so sorry that you are having such a rough time, but glad you are in capable and caring hands.  Having your computer back will help you stay in touch with your air family; hope you will call on us whenever you need to chat or vent.Roxanne, 59, South Carolina 2006 Asthma/ PF 2008 PF/ Sarcoidosis/Gerd Lady Slipper Orchid 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 September 11, 2009 Report Share Posted September 11, 2009 Barb have you spoke with a clergy person or a counselor? Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: Barb KyTo: Breathe-Support Date: Friday, September 11, 2009, 11:17 AM Thank you Bruce for your input. I asked the Dr. if I went on life support could I stay on it a month or two before they took me off and he said no, however, I had asked another Dr. the same question and he said they could. I just don't know what to do at this point. I may not have the best quality of life, but what I do have I like. I ain't ready to die yet. In March I caught pnemonia in my right lung and had to be put on a respirator which saved my life. I am wondering if that happens again and I need life support and I am not going to get it. This is all so confusing. What to do and what not to do. HELPFUL input will be considered..Barb from KYIPF 2006APLCH (Adult Pulmonary Langerhan's Cell Histiocytosis) From: brucemoreland <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, September 10, 2009 4:47:30 PMSubject: Re: Barb Ky BarbI don't know you. I am sorry your condition is as it is but glad you'vefound a place where you're receiving the care you need. There arenursing homes of every quality. Right now, 's mother is in one(they prefer Rehab and Skilled Nursing Center). I've tried to think ofmyself there and I think it's a very nice place. But we did lookcarefully before choosing. To any looking, medicare.gov does have gradesfor all nursing homes.As to signing the DNR, I was concerned when you said the doctor had yousign it. Signing it is your choice. For me theres a time when I willsign one. Are you sure that you want to at this point?I hope you're able to take advantage of the activities they have there.Yes, you've had problems and you're on 5 lpm, but don't let things youmight enjoy go by and be missed. Sometimes its easier to stay in theroom and not ask for help getting down the hall. But generally its notnearly as much fun.I do wish you the most comfort and best of care you can get.>> Hi. My name is Barb and I was diagnosed about three years ago withIPF. Then several months later I got diagnosed with Adult PulmonaryLangerhan's Cell Histiocytosis. So, what do I have? I don't have aclue, but whatever it is it is killing me. I am on four liters ofoxygen 24/7. I have developed heart problems and am on prednisonedaily. I have difficulty walking a few feet without running out ofbreath. I just spent two months in three different hospitals and threeweeks in a nursing home. I will be returning to the nursing home thiscoming Tuesday, because my 49 year old sister who works third shiftfound out it is hard to take care of someone in my shape, May God Blessher, 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 aboutpain. Yes, I know what they are talking about. It is pain, but notpain. It is very scary trying to catch your breath and can't and itkinda hurts. Anyway, it is a daily thing for me to feel this kind ofpain.>> I am gaining a lot of water weight and wondering if anyone else isblowing up like a balloon. Also, I have a lot of swelling of the feetand legs. My diabetes is out of control. I am up to three shots aday. Anybody else feel like their life has spun out of control?>> I joined this group to offer support to other sufferer's of this lungdisease and I also joined it to get much needed support. I feel like mylife is at the end and it is frightening.>> May God Bless You All,>> Barb>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> BR>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> ;>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>&g t;>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> gt;>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> BR>>>>>>>>>>> Hi. My name is Barb and I am a 51 year old female who lives insouthern Kentucky. I was a member two years ago. Now, I am back. Ihave had two diagnoses one is IPF and the other is Adult PulmonaryLangerhan's Cell Histiocytosis. Which one do I have? I don't have aclue. All I know is it is pretty apparent I am dying. Dummy me, quitsmoking New Year's Eve of this year and about two weeks ago I smoked twocigarettes and had a big set back and am still trying to recover. Iwould give anything had I quit smoking when I was first diagnosed.>> I am on four liters of oxygen, prednisone, warfarin, heart medicationand so much more. Yep, now my lungs are affecting my heart. I can'twalk but a few feet and I am totally out of breath. I just spent twomonths in the hospital, originally admitted for my breathing or lack of,congestive heart failure, then I somehow managed to cough so much that Itore open the vessels in my lower stomach and almost died of internalbleed. I had to have several pints of blood and plasma. At least thatis what they tell me. When the dr.'s found the bleed, they put me ondiladah (not sure of the spelling, but it is a strong pain killer givento 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 theother), 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 getthe strength back in them so I could walk.> Now, I am living with my 49 year old sister who works third shiftand who has decided after a week with me being here, that I am just tomuch to care for, so I am being readmitted to the nursing home thiscoming Tuesday. There I will be until I die.>> I read your posts and can relate to the pain thing. That is all Iknow to call it is pain. It is pain , but it isn't pain. It is kindasmothering with the sense of pressure on my chest.>> I am having tremendous difficulty with water weight. Is anyone elseblowing up like a balloon? Also, I am having memory problems. I can'teven 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 toprovide encouragement to others. So, please feel free to ask mequestions or offer me advice.>> May God Bless You All,>> Barb> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2009 Report Share Posted September 11, 2009 Hi Barb,I don't know if you know about the national non-profit organization, Aging with Dignity. It's mission is to affirm and safeguard the human dignity of individuals as they age and to promote better care for those near the end of life. The life and work of Mother served as the inspirational foundation of Aging with Dignity. They offer a Living Will that meets the requirements in 40 states and Kentucky is one of them! It's called: Five Wishes and it allows you to be very specific about life support options and it also lets your family and doctors know: Who you want to make health care decisions for you when you can't make them. The kind of medical treatment you want or don't want. How comfortable you want to be. How you want people to treat you. What you want your loved ones to know. Here is the website: http://www.agingwithdignity.org/five-wishes.php C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Friday, September 11, 2009 7:22:20 AMSubject: Re: Re: Barb Ky Hi, Dot:Thanks for answering my post. I am 52 years old. I am happy for you that you have a mom and a sister helping you through the last stages of this horrible disease. The nursing home I am at is really good. I had heard all kinds of horror stories of nursing homes before I came into this one. Now that I am here, i was worried for nothing. For the most part everyone treats me like family and are very friendly. I get around mostly by being pushed in my wheel chair. I just don't have much breath to walk too far. I definitely know what you mean about not knowing if I'll wake up in the morning or suffocate in my sleep. I wear a bi-pap at night and it helps my breathing a lot. I pray that God be with you as you are struggling for air. No, I am not married and I have no children. My sister started working in housekeeping at this nursing home i am in about two months ago and she keeps an eye on me that away. She has offered me a place to live at her house, but I need so much help, I would rather just stay here where people are paid to take care of me. This way I don't feel like I have to apologize for being sick all the time and needing things to be done for me. I hope this post has helped you to get to know me better.Barb from KY From: Dorothy Delarosa <ddmhogc (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, September 10, 2009 7:23:07 PMSubject: Re: Re: Barb Ky Hi Barb, i'm Dot. How old are you? I know what it's like to lose your breath every second of every day & go to sleep or @ least try to sleep & not know if you're going to wake up in the morning. If it weren't for my mom & sister, i just don't know what i would do either. They do everything for me. They wash, cook, clean, feed, you name it. They are awesome. It's sad though..i should taking care of my mom & here she is doing the best she can, God bless her heart. I am especially thankful because my medicaid pays for my sister to be my home provider. I mean she was doing it anyway when i got out of the hospital back in November, but what extra blessing that she's getting paid to take care of me. I know i hated being in the hospital. I went in last Oct for lung biopsy & stayed there 26 days..horrible, horrible experience! But i can't imagine staying in a nursing home, but like you said @ least they got you hooked up to internet. Do you have children? Husband? I've never been married & no children. It's just me & my mama. I do have a wonderful little great niece..she's 3 years old Caden..she's the closest i've come to having a child. How's your appetite? Are you on heavy pain med's? How long does your doc say that you have to be in nursing home? Dot/42/UIP10/ 08/Sa,TX 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...
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