Re: Re: Barb Ky

[Guest guest]

HI Barb- my name is Joyce. Pink calls me Rudy Joyce to tell us apart. I am so sorry to hear that you are having such difficulties and pray that you feel better. I live in Arizona but have a good friend who lives in Guston KY. Have you heard of that? She loves dogs and she spends every hour of every day rescuing them. She travels all over taking dogs from one shelter where they are about to be euthanized to another place that is safe. I have never been to Ky but have always wanted to go and see her. I like you worry about a DNR or even a living will. I'm afraid if I get pneumonia and end up in the hospital that they will let me die rather then put me on life support and let me heal. I don't want to suffer but I sure don't want to die before my time. Are you able to read? Watch TV? It is so good that you have your sister right there and your mother. I will pray for you in the hopes that you feel better and less anxious. Joyce Rudy AZ Birds

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

[Guest guest]

Hi, Rudy Joyce:Thank you for responding to my post. No, I have never heard of Guston, KY, but that ain't saying much. There are a lot of little bitty communities around here that I haven't heard of. So, how is the weather in Arizona? When I was in my early twenties I had the pleasure of getting to go to Arizona. Long time ago and a lot of oxygen shorter and I can't remember where exactly I was in Arizona. I remember I liked it pretty good. I remember the people were really nice.I love dogs too. I had to give my three dogs away when I came in the nursing home. Two of them went to my sister's and one went to her friend. I get to hear about them, so it isn't as bad as it could be if they were

with total strangers.. Praise God for that.I don't read much, not that I can't. I do have a college education and graduated on the honor roll, I am so glad to say. Anyway, I watch tv some. Right now I am hooked on HGTV. It is a station dedicated to design and house and apt. hunting. Unbelievable the prices for rent and mortgages. Do you have that station in Arizona?I am going today to get my eyes tested and get some new glasses. I have had the ones I got on for at least seven years or so. So, I believe it is time for a new pair. They just announced church service and I believe I will go. Take care and may the Lord Bless You Abundantly. Barb from KYTo: Breathe-Support Sent: Sunday, September 13, 2009 11:09:03 PMSubject: Re: Re: Barb Ky

HI Barb- my name is Joyce. Pink calls me Rudy Joyce to tell us apart. I am so sorry to hear that you are having such difficulties and pray that you feel better. I live in Arizona but have a good friend who lives in Guston KY. Have you heard of that? She loves dogs and she spends every hour of every day rescuing them. She travels all over taking dogs from one shelter where they are about to be euthanized to another place that is safe. I have never been to Ky but have always wanted to go and see her. I like you worry about a DNR or even a living will. I'm afraid if I get pneumonia and end up in the hospital that they will let me die rather then put me on life support and let me heal. I don't want to suffer but I sure don't want to die before my time. Are you able to read? Watch TV? It is so good that you have your sister right there and your mother. I will pray for you in the hopes that you feel better and less anxious. Joyce Rudy AZ Birds

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