Guest guest Posted March 22, 2009 Report Share Posted March 22, 2009 I love you too missy Aussie.. I so wish you could have been with us. I would just like to see if an Aussie hug is the same flavor As a Southern US hug..?? !! I'll bet it is.You are just free to peek at anything I put on this board and anything that makes you happy or smile then that part is for you.. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Even though your message was for I snuck a peek as usual!Your words were sooooo wise & RIGHT Princess HH.......Thank 'eeGIO> > >> > >> > > 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> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > 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>> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > > Hi. My name is Barb and I am a 51 year old female who lives in> > > southern Kentucky. I was a member two years ago. Now, I am back.> > > I have had two diagnoses one is IPF and the other is Adult > Pulmonary> > > Langerhan's Cell Histiocytosis. Which one do I have? I don't have a> > > clue. All I know is it is pretty apparent I am dying. Dummy me,> > > quit smoking New Year's Eve of this year and about two weeks ago I> > > smoked two cigarettes and had a big set back and am still trying to> > > recover. I would give anything had I quit smoking when I was first> > > diagnosed.> > >> > > I am on four liters of oxygen, prednisone, warfarin, heart > medication> > > and so much more. Yep, now my lungs are affecting my heart. I> > > can't walk but a few feet and I am totally out of breath. I just> > > spent two months in the hospital, originally admitted for my> > > breathing or lack of, congestive heart failure, then I somehow> > > managed to cough so much that I tore open the vessels in my lower> > > stomach and almost died of internal bleed. I had to have several> > > pints of blood and plasma. At least that is what they tell me. When> > > the dr.'s found the bleed, they put me on diladah (not sure of the> > > spelling, but it is a strong pain killer given to me in my IV).> > > So, most of what I know about the bleed is hearsay. After being in> > > three different hospitals (transferred from one to the other), I> > > spent twenty days in the nursing home doing rehabilitation, because> > > my legs became so weak from lying on my back that I had to get the> > > strength back in them so I could walk. Now, I am living with my 49> > > year old sister who works third shift and who has decided after a> > > week with me being here, that I am just to much to care for, so > I am> > > being readmitted to the nursing home this coming Tuesday. There I> > > will be until I die.> > >> > > I read your posts and can relate to the pain thing. That is all I> > > know to call it is pain. It is pain , but it isn't pain. It is> > > kinda smothering with the sense of pressure on my chest.> > >> > > I am having tremendous difficulty with water weight. Is anyone else> > > blowing up like a balloon? Also, I am having memory problems. I> > > can't even remember what my screen name was when I was in this > group> > > last. Anyone else having memory problems?> > >> > > I joined this group to get encouragement to go on, I also want to> > > provide encouragement to others. So, please feel free to ask me> > > questions or offer me advice.> > >> > > May God Bless You All,> > >> > > Barb> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2009 Report Share Posted March 22, 2009 , I swim twice a week in one of those "infinity pools". It's a small pool with a moving current for me to swim against. I have a tank outside the pool, 25 feet of tubing and I get in and swim! It can be done and my doctors think it's terrific exercise. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sunday, March 22, 2009 6:54:30 PMSubject: Re: / Geo Well Princess Hee Hee... my hug would've been a WET, Drippy one with that warm temperature & all that water about..... I would've been climbing in & out of that pool all day long! I've been looking at the pool where I do my antics & wonder if in time they'll cope with me having an O2 tank tied to a Flag post just near the edge! I can't imagine giving up the POOL! Do any of you Tankers use swimming pools with you O2 in use??????? GIO > > > >> > > >> > > > 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> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > 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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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