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end stage emphysema and hospice care

Posted , 11 users are following.

debbie99180
debbie99180

I am 61 yrs old. and was dx with late stage emphysema about 3 yrs ago, was told I had a 20% chance of being alive in 4 years. I have been on continuous oxygen since that time and 30 mill of prednisone daily. In the last 2 years I continued to decline, and I retain co2, being on higher oxygen saturation made my breathing worse, we lowered it to 1 and I did a little better but still bad, My oxygen saturation has always dropped down in the 5o's highest it gets most times is around 77 which I am comfortable with at that. I was told to get my affairs in order by my pulminologist and pc Dr. So I went on hospice, Hospice takes very good care of me and glad I decided to go on it, except I was told that after so much time i had to show a decline ( with medicare)  I can't get out of bed hardly but to walk a few feet to bathroom then it takes me 20 minutes or so to get enough air to go back to bed, have not been out of the house or got dressed in months bedridden and taking small doses of morphine, Although bad, I kind of plateaued. Does any one know if I don't continue to decline even with my symptoms can medicare require  I end hospice? I also had a catheter because of incontince now too. Any help or ideas would be helpful. I live in Oregon and can't find a good forum other than here in the UK.

1 like, 42 replies

42 Replies

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  • fikayo61242
    fikayo61242 debbie99180

    Posted

    Hey Debbie my name is Fikayo and I was wondering if I could interview you about your disease, just over the internet. My anatomy class is having a project where we learn and talk about different diseases. If its okay with you, theres just a few questions i'd like to ask. Thank you smile
    • fikayo61242
      fikayo61242

      Posted

      oh i didnt mean to add that face
    • debbie99180
      debbie99180 fikayo61242

      Posted

      Hi fiikayo- do you have emphysema? I can't be on line very often or sit up so not sure I can do this, can you tell me more about his before I decide please.
    • debbie99180
      debbie99180 fikayo61242

      Posted

      Hi fikayo- I thought about it and. Decided to decline your offer to interview me. I really don't have the energy or more importantly the air to be able to do that. My opening stament and the rest of my replies pretty much tell my whole story anything other than that that is all I can say. Thanks
  • debbie99180
    debbie99180

    Posted

    Does anyone else keep getting a pop up to have you sign up for like a well care ( I think) the choice is " don't show again" or " remind me later" ?? I always click on don't show again but it pops up while I try to sign in and I have to start all over or it freezes the frame for awhile? It just keeps happening also I have keep me signed in link to and it never does. Hmm any ideas?
    • lill83898
      lill83898 debbie99180

      Posted

      Debbie

      I think that is an ad popping up an dit is likely not affiliated with this site, just an add.  Sometimes people get ad blocker programs that help. And sometimes if you clear your cache they will go away, at least temporarily. They are very annoying.

      I also use the 'keep me signed in' , it seems to work, but again if I clear my cache or cookies, it needs to be re-ticked again.

      In other words....it's computer related I believe.

      Lill

    • aitarg35939
      aitarg35939 debbie99180

      Posted

      You might want to see if your phone or computer is set to accept cookies, and also check to see if it's set to remember login/password. The other alternative is to leave the site open on your device. I wouldn't do that but to each their own. Also if you clean the caches frequently, you'll have to sign in all the time.
    • debbie99180
      debbie99180 aitarg35939

      Posted

      Aitarg- I did check all

      Those things and it is all on the way it has always been and no problems with other sites. Cookies are accepted and I never log out I have remember me on here too but I still have to log in. Oh well guess I will

      Just have to deal with it.'but thanks for your help. Also I did clean out my cache and colors to but made no difference.

    • gbhall
      gbhall lill83898

      Posted

      This pop-up business has been there for ages, and it is so incredibly annoying that if I were not so determined to help others on this site, I would never come back. I mean that, it is so annoying. It happens whenever your browser 'loses the focus' of the post you are reading, and unfortunately you have to do that just to scroll up and down the page.

      As aitarg35939 says, the constant need to be signed-in to post anything is also annoying, but more understandable, and it is essential to click the 'keep me signed-in' box every time. Even when you do that, sometimes the response (which fills in your details for you) does not work fast enough and you do have to actually type. Or if you missed the 'keep me signed in' last time, it will not default that box the next time, which is also annoying. 

      Anyway, if your log-in comes up without your details filled in, wait a few seconds to see if the cache catches up, and if it does not, just press the login button anyway. That sometimes causes the details to appear.

      If only someone would have the decency to fix these problems once and for all, if it is a way to fund the site, it can hardly be working very well.

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