How do I handle knowing I won't be here much longer?

Posted , 8 users are following.

  I'm kind of freaking out about it.  Not sure how to cope or how to keep up some kind of hope or joy in still living.

 

1 like, 37 replies

37 Replies

Prev
  • Posted

    Wow so sorry my moms 84 stage 4 and oxegyn is 3. That's tough good luck

    • Posted

      Thanks Denise.  So sorry about your mom.  This is tough no matter the age.  I'm going to check out some "natural" aids for it.  I used to use one, but it was discontinued.  Haven't found any others, but haven't looked lately.

  • Posted

    If you have emphysema, it can be very slowed down regarding progressing. It is best to quit smoking, because smoking is the big thing that makes it progress very fast. But, If you exercise, and keep a positive attitude, and also take care of your health, and take your daily meds,  then it will probably progress very slowly, it even at all. Nowadays, we can control the timing of the progression. 

    What stage are you in, or, what is your lung capacity FEV1 % ? Is it at End Stage? 

    • Posted

      Thanks for the support.  I am in stage 4, end stage, and have 20% FEV1.
    • Posted

      Nooccar, if you feel strong, and not ready to retire, then just because you are in End stage, doesn't mean that you are going to retire. I have met and have heard about, many people who are in End stage, and have been in End stage for more than 10 years. Just because the stage say's End stage, doesn't mean it is, and is only words. It is really up to the individual. Usually, it is the individual's who have lived into their eighties (mainly), who seem to retire due to End stage, but that is mainly due to aging, and aging causing the lungs to grow old too. Age has a lot to do with lung disease (emphysema) too, and if you are younger, and in End stage, you could live for many more years. Usually in the eighties is when individuals who have emphysema seem to use oxygen 24/7, and wheel chairs. 

    • Posted

      Brenda,  I am in my early 60's, and am on disability, and have been pursuing a college degree the past year and a half.  I have been on o2 24/7 for about 6 months.  I am able to do without it sometimes, but not as often as I'd like.  I find that when I do that, my o2 level goes down to the 70s, which is not good.  So I've been limiting that action.  I certainly don't want to use a wheelchair.  I am still babysitting my grandchildren and driving myself.  Did 5 loads of laundry today, which was difficult, but I made it through pretty good, so I'm happy with that.  figured that was my "exercise" for the day. :-)

       

    • Posted

      Nooccar, you are still young for aging lungs, in my opinion, and from what my Dr informed me, and others. Also, you sound strong, from what you said in your comment. I don't think you will be retiring for a long while, especially if you are not smoking, and is taking good care of your health and taking your meds along with exercise....you can control when you want to retire with this type of lung disease. I wish you the best! 💗👍

  • Posted

    All of us deal with the same feelings you are going through. It is necessary to embrace the sadness as well as joy. You, we must grieve. No way of getting around it. Feel the sadness. You have a right to be sad. Taste the salt of your tears.

    Also if the sun brightens your day, someone brightens your day, you remember love or special hikes or friends; then relish the moment no matter how quick it passes.

    All feelings are good feelings if you let them. It is so wonderfully human to feel sad sometimes maybe even often. Learn to love all those feelings. Live. Accept. Know it is OK to die. Everything dies. Everything. Suns die. Rocks break apart. Children die. Galaxies die. Pigs die and bloat feet up.

    The basis of all feelings according to one theory is the terror of dying/separation. Few want to die but if we do not learn to accept it in occasional moments of positive reflection we may miss out on the life we want to live.

    When truly the time comes, we may get some help like my sister did. She told her nurse, I want out. Fortunately for her law where she lived allowed the request. Although I could not understand, she later spoke to me from the threshold of life. I think she loved me and was still content with letting go.

    And hey? Maybe you will be a pig someday. Wouldn't that be fun!

  • Posted

    With COPD or any fatal illness, when you focus your mind on the issues, it's not death that's the scary thing, it's pain and discomfort. After death, religious people get to go to Heaven (if they've been good) while atheists get extinction of consciousness and nothingness, which isn't so paradisey as Heaven, but it's kind of neutral.  So the real issue is dealing with the pain and disability, and coming up with solutions or pain-reduction measures which make it more bearable. For instance, I particularly don't like waking up choking on great globs of glue-like phlegm, it's really unpleasant. So I've learned to sleep sitting up (still happens but not as much). Then there's those times (like when you walk up an incline) when you can't breathe quick or deep enough to get the oxygen to your brain anymore, and you start panting like crazy and get this panickly feeling and it feels like your heart is going to burst or you're going to faint, or sometimes you do faint. I hate that, but I have now learned to lay on the floor before I faint (and not to walk and talk at the same time). And the trick for getting over fear of impending death, I find, is this (this solution is not as easy as laying on the floor).  It is the ego which is scared of death, not your deeper self. Unfortunately most of us are psychologically centred in our ego (which is a bit like a mental mask for interaction).  So you have to learn to move your mental centre back from your ego to the True Self. This takes time, but can be achieved by various means, including meditation, yoga, and other consciousness-altering techniques. Carl Jung is good on on this stuff, and I also recommend R A Wilson's 'Prometheus Rising'. Be seeing you.

    • Posted

      thank you Dee.  I really appreciate the words and the thoughts.  I will take up some of your suggestions.  It's kind of ironic that you bring up Jung as he is the one I chose to write about in my Psychology course.  lol   Unfortunately, I put that on hold at the moment to deal with this.  Couldn't think or concentrate on Psychology in depth.  But will hopefully take it back up in a few weeks.

      Thanks again.

  • Posted

    hello there I was diagnosed with COPD last year and are a non smoker this was as the nurse said due to passive smoking working in offices 25 years ago before the non smoking law came in and to chemical fumes from cars and trucks as i am a lorry driver but I wont be for much longer.  Its difficult to get accurate information from anyone my diagnosis came about after a poor spirometry test I see the nurse on a regular basis but I have had to go to A+E this morning at The Queens medical centre in Nottingham because I overdosed on the Eklira inhaler the doctor there was fantastic giving excellent reassurance.  I think the best thing to do is take one day at a time.  My doctor is still reluctant to issue fit for work notes so I have to struggle on at work keep in touch yes we need to all stick together on this
    • Posted

      Hi Robert.  I am trying to take it one day at a time, but still having trouble with that.  Hoping that I'll come out of this slump soon.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.