Re: Re: Barb Ky

[Guest guest]

Hello Barbara. I am an 80 year-old kid living in Maine and freezing my butt all winter. Despite IPF, that's my only complaint. I have relatives in a nursing home and I am gratified at the fine care they get. I am pleased that you are getting the same. Should my day come, I hope for the same, but that depends on

my behavior, which is harmless but sometimes considered inappropiate. I have just returned from a trip to North Caroline househunting and seeing my pulmonologist at Duke University Medical Center. I plan to move there as soon as I can make the necessary arrangments. For me it means the top medical care and a warmer behind.

My best to you. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Thursday, September 10, 2009 4:33:20 PMSubject: Re: Re: Barb Ky

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