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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

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  • debbie99180
    debbie99180

    Posted

    I forgot to ask, what is the badge for?
  • gbhall
    gbhall debbie99180

    Posted

    Debbie, I really feel for you, as my partner suffered similarly, but not as bad.  If it is any consolation, most times, the strain on your heart will prove too much, and you will pass painlessly, often in your sleep.

    I am not familiar with medicare (UK) but the attitude does sound rather appalling - I do hope it does not worry you. I would talk to a senior at your hospice for reassurance.

    The badge is just a rather silly motivator this site uses. You would have got one for starting a topic.

    • Keepin_Alive
      Keepin_Alive gbhall

      Posted

      I respect your words "and you will pass painlessly, often in your sleep". Since time is not on my side and emphysema is incurable, you have today refreshed my spirit.
  • aitarg35939
    aitarg35939 debbie99180

    Posted

    Hi Debbie

    The best thing for you to do is to call Medicare, or have whoever helps you call. I was unaware that they had changed the unlimited rule on hospice. Guess it's no surprise after what's happened in the last few years. If all else fails, have the social worker for your hospice provider make the call.

    I am so sorry that you are going through all of this.

    • debbie99180
      debbie99180 aitarg35939

      Posted

      thank you altarg, It might be different in the US. Not sure but I think your right it has changed.
    • aitarg35939
      aitarg35939 debbie99180

      Posted

      Hi Debbie

      I wrote a longer reply which is in moderation. Thought I'd caught all the extra periods but apparently nu.

      I am an American with 26 years on Medicare. There's really no point in doing anything other than asking Medicare directly.

      Good luck.

    • debbie99180
      debbie99180 aitarg35939

      Posted

      Hi aitarg, thank you for your reply. So are you saying I should contact Medicare and ask them before I know what the doctor is going to do? He has seen me twice and laying in bed struggling to breathe the hospice nurses have been here when I have had to walk the couple feet to the bathroom and seen how I suffer and struggle to come back to bed also have to get my oxy up enough to make it back to bed which is usually about 15 minutes. I have a catheter but not having bowel movements so IAM talking a laxitive that is why I am even getting up. But I struggle to sit up and talk so I am wondering why I should have to show a decline? What scares me is if I was takin off hospice I could never make it out of my

      Home to go to the dr. And wouldn't get my meds. Thanks

    • aitarg35939
      aitarg35939 debbie99180

      Posted

      Debbie, you were looking for the answer about whether Medicare will let you stay on hospice. The only people who can answer that question with 100% accuracyare those at Medicare. They are also the ones who can tell you if the doctor needs to use a specific phrase to trigger more coverage.

      Doctors' offices deal with so many different insurance companies that you can't expect them to know specifics of any one plan (unless you go to a Medicare & Medicaid-only low income clinic). So yes if you want fact rather than rumor, call Medicare.

      If in fact you can't stay on hospice, you may want to look for a personal care situation, or if there's either a Medicare or nursing school (RN, preferably) you might find a student to live with you.

      Call Medicare.

    • debbie99180
      debbie99180 aitarg35939

      Posted

      Thank you Alitafg,'you were very helpful and I appreciate it a lot. I will

      Call them today. It's scary because we live in a small RV and won't have any room to have someone to live with us, and can not leave here because I can't I can't get dressed, IAM hoping have a catheter ( in continuance) and having to be bathes will help. Thanks so much n

  • Keepin_Alive
    Keepin_Alive debbie99180

    Posted

    Thank you for your speaking as you have. Your words will help me go forward and better try to manage shortness of breath. Emphysema is a disease I do not wish on my worst enemy. As to your question concerning Medicare coverage and lowering levels of oxygen, that would be answered best by your physician and/or online contact with Medicare's patient portal/or by phone to Medicare. Being a resident of Oregon there may be help at your state level for a qualified disabled person as you appear to be.

    My emphysema has not reached the stage as you describe yours has, but I recall when I first felt the loss of breath how scary it was, and now my body has in some way become more used to that condition as it becomes worse. I wish you better days and easier breathing going forward. Keep the faith debbie 99180.

    • debbie99180
      debbie99180 Keepin_Alive

      Posted

      thank you kA- I agree, with lung CA in 2002 wedge recection and in 2009 breast ca, mast, and chemo, this is by far the worst. my advice is don't stop moving keep doing as much as you can. because when you get this stage you can't do to much it will make you worse,
    • debbie99180
      debbie99180 Keepin_Alive

      Posted

      Keeping alive- I hope I have in some way, my best advice is, if your still able to, keep moving and active that will help you a lot, and go to physical therapy if you can to excersise. My sister (best friend) and my dad passed away then I got sick and crawled in bed and didn't get up for

      Months because of my grief, I stopped my therapy and just continued to get worse. So please stay active!!

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