Re: Barb Ky

September 10, 2009

Hi Barb,

I've been off the board for about 2 yrs, but I remember you well. I remember you were going to start a store in your garage. I have been wondering how you were. I'm so glad to hear from you.

A 60 HP PH COPD 6/05 TN

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

September 11, 2009

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 To: Breathe-Support Sent: 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

September 11, 2009

HI, Peggy:YES, I remember you. Thank you so much for responding to my post. How have you been doing? How is the weather in Florida? We have had a easy summer here in Southern Kentucky. Lately, all it wants to do is rain. How have you been feeling, Peggy? Are you getting any better or are you getting worse? There really isn't much to write about. Just the same-O , same-O pretty much around here. Physical therapy for an hour or so and on Mon, Wed, Fri, and Sat. we play bingo for little prizes. It is a lot of fun and takes up some time. There are a few places where we can go outside and get some fresh air. Then there is the option of eating our meals in our room or

eating in the dining room. I usually eat supper in the dining room and sometimes lunch. I most always eat breakfast in my room. I am too lazy to get out of bed and dressed early in the morning. I guess I am rambling on now. So, I think I will send this post before I bore you to death. Hope to hear from you soon.Barb from KYTo: Breathe-Support Sent: Thursday,

September 10, 2009 6:36:47 PMSubject: Re: Re: Barb Ky

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@ yahoogroups. comSent: 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

September 11, 2009

Hi, Pink Joyce:thank you for responding to my post. All, I got to say is Praise God we have nursing homes to take care of us when we are not able. You take care of yourself and I hope to hear from you again sometime.Barb from KY To: Breathe-Support Sent:

Thursday, September 10, 2009 5:00:23 PMSubject: Re: Re: Barb Ky

Hi Barb

yes i do remember you

sorry you need a nursing home

glad you found one that is meeting your needs

you are certainly in my thoughts

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

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

September 11, 2009

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)To: Breathe-Support Sent: Thursday, September 10, 2009 4:47:30 PMSubject: Re: Barb Ky

Barb

I don't know you. I am sorry your condition is as it is but glad you've

found a place where you're receiving the care you need. There are

nursing homes of every quality. Right now, 's mother is in one

(they prefer Rehab and Skilled Nursing Center). I've tried to think of

myself there and I think it's a very nice place. But we did look

carefully before choosing. To any looking, medicare.gov does have grades

for all nursing homes.

As to signing the DNR, I was concerned when you said the doctor had you

sign it. Signing it is your choice. For me theres a time when I will

sign 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 you

might enjoy go by and be missed. Sometimes its easier to stay in the

room and not ask for help getting down the hall. But generally its not

nearly 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 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

>

September 11, 2009

Hi, :I am glad to see you have come back to the group also. Yeah, my store in my garage idea was a flop. Wish I still had the health I enjoyed then. But I am alive. Praise The Lord. I hope to keep hearing from you.Barb from KYTo: Breathe-Support Sent: Thursday, September 10, 2009 11:45:49 PMSubject: Re: Re: Barb Ky

Hi Barb,

I've been off the board for about 2 yrs, but I remember you well. I remember you were going to start a store in your garage. I have been wondering how you were. I'm so glad to hear from you.

A 60 HP PH COPD 6/05 TN

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

September 11, 2009

Barb

I sensed from your wording and do even more from this that you may not

be ready for a DNR. Each of us has to determine when. The March episode

sure would make one think again. Its all quality of life and amount of

suffering being worth it. Sounds in spite of everything you still have a

quality of life you value. Talk to others and make your own decision.

Don't let a doctor force it in either direction.

Now, have you given medical power of attorney to anyone? Is there a

friend or someone you would trust and would like making crucial

decisions? If not, please to prepare a directive to physicians and

agents, which may have a different name depending on your state. (Most

states it is a Living Will or Advanced Medical Directives). You can then

outline more of your preferences. You can update as you progress. In

most states the DNR only applies outside of the hospital. It does vary.

Inside the hospital a medical power of attorney or directive to

physicians would guide the decisions.

Now, I'll share my personal views as they apply only to me. But just the

way I try to think through the process. I don't feel yet that I'm at the

stage if I got hit suddenly with something lung or heart related, I

wouldn't want to be resuscitated by the paramedics. Once in the hospital

and once my condition was known and prognosis better understood then my

directives and also all the conversations (my medical power of

attorney) and I have had would be the guide. But there are things that

could happen that I could still recover from and have more quality life.

Now would I want to be maintained on life support in the hospital when

it was known the quality wouldn't return or my death was still quite

eminent? No.

The time I'll prepare my DNR will probably coincide with when I bring

hospice in. At that point I'll be seeking just pallative care. Morphine

will be my friend more than a group of paramedics trying to revive me to

get to the hospital and go through more struggling.

I've prepared all the other legal documents I need. My DNR is sitting in

my drawer waiting the time in my life I feel it is appropriate.

P.S. I did look and Kentucky is much like Texas. The DNR is an Emergency

Medical Services DNR so it directs the EMS personnel. You might want to

look at the Kentucky Living Will/Advanced Medical Directive.

> >

> > 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

> >

>

September 11, 2009

Barb and Others

Sometimes its difficult to think in vague big picture terms as there are

so many things that could happen to us. I found one of the things I

needed to do was get specific in my mind and think if XYZ occured, what

would I want. Then you try to incorporate that into documents or

conversations.

> > >

> > > 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

> > >

> >

>

September 11, 2009

Thanks Bruce for your input. My sister is my power of attorney. But do I need special papers written up to make it so she can decide when I can be taken off a respirator. I think I am going to talk to my Dr. next time and tell him to tear up my DNR papers up. I think he will get mad and probably tell me to find another Dr. I guess I was looking for a Dr. when I found him. By the way, I met him when I was admitted to a different hospital than what I was used to. My old Pulmonologist is 50 miles away and I can't get there to see her, so now I am kinda in the mercy of dr's who do not know me or my history.Barb from KYIPF 2006To: Breathe-Support Sent: Friday, September 11, 2009 12:46:02 PMSubject: Re: Barb Ky