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Aug 09, 2008 - 8 comments

end stage




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by DALLAS777, Nov 15, 2008

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by lester3, Jul 07, 2009
i would like to know what causes the grunting noise of some copd patient. Is there anything you can do to help ease the noise, and help the patient relax

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by Allathy, Sep 20, 2010
I'm at "end stage" COPD. I was originally diagnosed when I was 39 years old (with stage 4). I'm now 56 years old and it's really caught up with me. I do qualify for a lung transplant but the mortality rate is so high and the incident of other life changing diseases is so great that I opted to deal with this disease vs any more surprises. I know that I get very down and I'm being treated for depression. It is so difficult to breath that when I do try to exercice I don't last long at all. When I start gasping for breath (which happens really fast...within the first 2 min or less) that's the end of the exercise. Most nights I don't sleep well. I wake up because I'm having trouble breathing so I do a treatment with the nebulizer then I can't get back to sleep because the medicine gives me the jitters.I have no desire to go and do anything because it will cause my breathing to become very rapiid and gasping. When I get to the point that I'm gasping for breath it feels as if I'm suffocating and my anxiety level sky rockets which in-turn affects my control (or lack there of) of breathing. There are times I don't even want to get out of bed because just getting to the kitchen is such a big deal...the gasping...anxiety etc, etc. On the rare occasion that I do venture out it's usually with my sister or husband. I have an electric scooter so I can do some shopping or looking around. The problem with this is.........why bother? I'm not going to be around to wrap gifts for Christmas or to wear a new outfit. Or, according to my Doc, I might be around. You just never know. I know I need a giant attitude makeover and I'm trying what end?
So, this is how it has been going for me at end stage. I hear everyone is different. I wish I could be more helpful in what to expect.

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by souped57, Jun 25, 2012
I too am living with end stage emphysema and C.O.P.D. It is very hard to live most days.For the longest time I considered suicide but did not want to do that to my family. I feel tremendous guilt that I can't do the things with my family especially my grandchildren that I once did. They do not understand that I am so sick or why most days I can't get out of bed. I had a bout of pneumonia last year that nearly took me out but somehow I hung in there. I remember lying on the sofa so weak that I couldn't even raise my head off the pillow without choking and gasping for air.I pray constantly and reminisce about the days of old when I was up and around cleaning and gardening, fishing and camping out. This has been very hard on my husband since he works full time and has the responsibility of everything including grocery shopping. I spent many days praying to die and feeling sorry for myself. It was when I was getting over the last bout of pneumonia that I realized that I have never been a quitter and as long as I could crawl I am going to make the best of the time I have left.I practically did crawl to the kitchen and got a bottle of Gator Aid and drank the whole thing. Then I went outside and started watching the wildlife that come out very early in the mornings. This has been an inspiration for me for birds, squirrels and rabbits know not what they will eat from one moment to the next yet they live life to the fullest as I plan to do. I will not be going to the hospital unless I am unaware of it during my last hours since you catch more diseases there than any place especially with these lung diseases leaving your immune system so weak.I still have days of feeling sorry for myself but they are not as many as they once were and as long as I am able to crawl I will make the best of the time that I have left. None of us know the state that we will be in in this life we can be fine one day and very sick or maimed the next.I am 55 and whenever I feel sorry for myself now I think of the very young children with cancer and terminal illnesses and I thank god that he has given me time to prepare my family to some degree and that I am not one of the parents with a terminally ill child.GOD IS VERY POWERFUL and I will put my trust in him and enjoy whatever time I have left and pray that my end will come in my sleep.I sympathize with anyone living this nightmare and know first hand how depressing it makes you.Only someone with these diseases emphysema and C.O.P.D. can fully understand what you are going through for it is terrible and if they have never lived it then they can't possibly understand it.It is a scary feeling to be trying to walk and lose your breath and gasp for a breath of air.It is equally scary to bend over and lose your breath to the point that you're not able to straighten back up.I pray that god looks down on everyone with these diseases and helps them as they struggle every both mentally and physically when they have these diseases.I try to get as much exercise as I possibly can and by this I mean walking outside or through the house as much as possible. May god bless all of you that are sick and give you some good days as you continue to struggle with this very debilitating disease.

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by camerorhonda, Jun 16, 2013
I too myself have stage 4 COPD, and I get very depressed, because I remember being able to go out with friends and go dancing, ect, going to grocery store, and parks, now I am 46 years old and my lungs have gotten worse, I am out of breath when I even go to the car or clean house, especially when I try to run the vaccum cleaner, I used to work, but the copd took over and now I can't even do that, I get very depressed when all my friends are at work, and that I am on dissability, I hate life and thought of suicide, but then I met this man whom accepted me with the deadly disease and I married him, because I knew I would not find anyone that coud not handle this disease, do I love him yes, but in love no, I hate what this disease has done to me, there is nothing like feeilng worthless, especially when you have to get a handicapp for you car. and people look at you wondering, well she dont look sick, I dont wish this diesease on my worst enemy, Just wondering what could happen next after the stage 4 copd, I had went to cleaveland clinic once before and they ran a bunch of tes, and told me that I was not bad enough that was back in 2010, and now my doctor ran another PFT and it the lady that did the test said the the test showed not a real big chang from last test, only a slight worse. so I ask myself why, I had followed everything that the doctor told me what to do, so at times I feel like just giving up. I used to be on oxygen 100 % of the time, but went thru pulmonary rehab and now not on oxygen, only as needed. So my question is this, I live in  Ohio, where is the best place to live for COPD sufferers?

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by Ehrin22, Jan 07, 2016
I was diagnosed at age 40 with COPD (chronic obstructive bronchitis), and I wasn't even a smoker. My lungs got scared (we think) from a staph infection following a bout with influenza in 1997. I picked up a dry barking cough when the flu went away and I didn't deal with it for 6 months, and that did it. I was in pretty bad shape then since I became a full-blown manic depressive after my cheating wife left with out kid in1986. At first I was a medication non-responder, so I didn't care if I lived or died, really. So I let the cough go. Then the use of anti-antidepressants sent me down the road of being overweight, which led to type II diabetes, which led to peripheral neuropathy in both legs and feet. My kidneys started going down hill about five years ago as well. Then this past June I caught Lyme disease. This is no fun if you have COPD,since the bugs go straight for your bronchials. I have fought off one chest infection after another as well as phenomena several times in the last 19 years, and Lyme hasn't made my chances any better. So to try to get rid of the Lyme, I had to take massive doses of antibiotics for months on end which somehow left me with a much-elevated breathing problem. My FEV is now at 42, plus all those antibiotics sent me into stage 3 chronic kidney disease. GFR level at 39. On that first day of worsening breathing, just getting to my feet from a sitting position almost knocked me out,. But I somehow got my breath back before the room blacked out and the wife dialed 911. I have since learned how to pace it, so I haven't needed assistance since then. I can no longer fall asleep normally because the breathing problem left me with sleep apnia. As soon as I drift off, my breathing automatically stops, and I wake up in a panic. And if manics don't get their sleep, their meds quit working and then you see them on the 6 O'clock news. So I don't know what to do now. And just where is it written that you aren't supposed to "feel sorry for yourself"? I'd like to see it AND the person who wrote it. Chances are the worst thing they've ever encountered in their lives has been an infected hangnail. Maybe I should have been a serial killer like Oscar Ray Bolin, since he has been sitting on death row for the last 30 years after brutally murdering three young women, and is as healthy as a horse. They say that the devil takes good care of his children. God could sure take a page out of his book, I'll tell you. You know, I love life just as much as the next person,but this world is no place to live it in. And if manic depression has taught me anything, it's that there are some things in this world that are worse than death.. So don't feel too bad if you want to feel sorry for yourself. Just place it to my account. Jesus will pay.....

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by Ehrin22, Feb 08, 2017
In addition to the post above, just one year after making it, my Lyme disease has wrecked my heart. I now have stage 4 Congestive Heart Failure (with an EF fraction of 20-25%). Only 10 percent of those diagnosed at stage 4 live beyond one year. It's been 9 months. It took quite a while to kill the Lyme (which surprised me that we even could), so it left me with a little bonus!

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by midgeypoo, Jun 21, 2017
Oh my !   Sorry to hear Ehrin!

I've never been told what stage COPD w/emphysema I am...only that the COPD is severe.  Then added pulmonary hypertension couple weeks ago too to the mix.

I only know how I feel and I can do less and less and get more and more out of breath.  I bend over  -  OOB, stretch to reach for something....OOB, stand normal length of time to cook a meal.....OOB.  Walk 20 feet to the bathroom OOB.  It's a living hell for most of us.

I sleep in a recliner, makes it easier to breath for me and gets my feet up too.

I suspect I am end stage with maybe less than a year to live.   Just my opinion - so am trying to tidy up loose ends.  Go thru things I cherish or value and make up boxes , 1 for each of the kids with what I want them to have inside.  This way there'll be no question on who gets what.

My sons are the ones who won't get much since they don't wear my  jewelry and such, not sure how to work that out yet.

Just hang tite and stay busy (even if it's with your brain or hands) keep occupied and not dwell on things it helps me when I can stay focused on other things.

Good Luck and hope you're around for a long time to come.  Take care (midgeypoo)

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