I was diagnosed with END STAGE COPD am depressed.

Posted , 7 users are following.

ricky2-
2

I was diagnosed 5 1/2 years ago with Stage 3 copd which as we all here probably know is moderate to severe.  I listed in my Title that I was diagnosed with end stage copd.  The reason I say that is because when diagnosed I had 30% lung function and based on my symptoms I know that I have progressed somewhere in the lung function of 29% or less.  I am going in for another test on 8-16-17 but I am depressed about this desease so bad that I do not even won't to get the test. I feel as if I am going to get a death sentence, as if I don't have enough to worry about.  

Does anyone else feel like it isn't neccesary to get that test to confirm I have less than 29% to confirm you have the end stage.  My primary care physician just told me that there was a relative new inhaler out that trduces the amount of exasperations but I would have to see a pulmonologist to get it.  If not for getting this new inhaler I don't think I would even go get test.  Does anyone else with this dreaded disease feel the same??

thanks

Ricky

0 likes, 8 replies

8 Replies

  • Posted

    Hi Ricky...Please don't despair.  I have been at stage 3/4     for the past 10 years and still going strong.

    I haven't got time to go through ALL the things you need to to, but PLEASE learn from sites like this  about breathing exercises,  Pulmonary Rehab, etc etc   get yourself referred to a good Chest Consultant and clinic and most importantly EXERCISE  ( I do this by walking)   EVERY DAY....if you can get a treadmill for when the weathers bad.    I went from not being able to walk more than 50 yards to doing a four mile walk,  over the course of the last 4 years.    There are loads of local walking for health groups around the country, which make walks more interesting and social.

    Being end stage is NOT a death sentence, but its up to YOU....make yourself your own medical advisor,  learn about your condition and get the help you need

    Go to your next appontment, and ask them for the help you need

    Good luck

  • Posted

    Hi Ricky, buy yourself a Sisca Salt Pipe from Amazon. I use mine for 25 mins each night while watching telly. They cost £15. They are nowhere near a miracle cure but do help and I find a big difference if I don't use it for a couple of nights. Good luck. 

  • Posted

    Hi Ricky

    Don't give up yet!  Do the test and demand the pulmonary rehab, and try the new inhaler.

    Both my ex and I have COPD but his is worse than mine.  We're in the States where all docs, GPs & pulmos, tend to take a fatalistic view of COPD.  Pulmonary rehab is hard to find & harder to get into when found.  For about 14 years I asked his docs to send him for some physical therapy after evety hospitalization/exacerbation.  They refused, both pulmo and electrophysiologists.

    5 or 6 years ago he went on oxygen after already leaving work on disability.  He became more and more of a couch potato, alternating foxes on the barca lounger with full-out 2 hour naps in bed.

    2 months ago in the middle of the night he passed out & fell in his bathroom.  Couldn't get up, pain from 3 broken ribs.  As usual, his phone was downstairs.  Took 3 days before he could get downstairs.  Took 10 days for him to finally go to the ER, and that only because I found out & wouldn't let him BS me.

    A week in hospital followed by a week in physical rehab, followed by a month of home visits by physical & occupational therapists.  He's walking again!  And i've been priven right AGAIN:  in his case the dizziness had more to do with tge fact that he wadn't getting up and mobing around than with anything else.  [Pls., y'all, I'm well aware that this is not the case with a lot of dizziness in a lot of people.]

    How does this pertain possibly to you?  It's been more than 10 years since his sats were above 24%.  In the last year the pulmo changed all if his inhalers.

    Will you get the same result?  I don't know, but I know for sure that you can't get them if you don't try.

    Don't give up yet!

  • Posted

    Hi Ricky

    I think it's normal to feel what you are feeling. You have been told some upsetting news . So now ask yourself is this how you want to be. NO apart from having a good doctor or nurse the rest is down to you walk more flat ground to begin with but push yourself yes it will feel hard and yes you will get short of breath but it won't kill you it will help. and it will give you more confidence your not going to run marathons but you could walk them if you want that is. It seems weird that exercise is the key to lung problems but it is and it works I'm a copd sufferer for over 20 years stage 3 by pushing younselfish you can control it and have a normal life

  • Posted

    Hi Ricky, we all just have to do whatever we can to try and help improve things for ourselves, just do whatever it takes to make life more comfortable than it already is.

    What was the name of the relatively new inhaler do you know?

    Interested to know.

    • Posted

       (COPD). The new treatment is an inhaler drug called Breo Ellipta (fluticasone furoate and vilanterol inhalation powder). It is also approved for the treatment of exacerbations in COPD patients.

      HI Vee, i think this is it.  I want know for sure until I go see specialist next thursday.

      thanks for your comment 

      ricky

  • Posted

    I also have stage 3 Emphysemia, yes, it can be very lonely and the feeling of dejection at not being able to live as you were, all is not lost, take it all one step at a time, do anything you can to help yourself, I find walking albeit slowly is wonderful getting out in nature, listening to the birds, walking my dog, my lifesaver, I have to get out daily just to walk him, this also helps me. Research all you can on the disease, just don't give up, it is difficult at times when you just want to let go of it all and stop struggling for air, and lugging around the oxygen, and getting tired all the time, a far cry from the rip tearing person I used to be. Take heart, we are all struggling one way or another, hope the many responses you get will give you hope, hope is the key to keeping going, enjoy all the little things in life, know you are supported by all of us who are struggling with this problem. You are not alone, kindest thoughts to you.

  • Posted

    Hi, have just read your post. Yes, same as you finding the depression is the hard one to get past, I am also end stage and on oxygen for any exertion, like almost everything, but fight on we do, I think the acceptance of where we are at, and how to manage with the barriers we have is difficult, and when I go downhill, find it more difficult to get up again, it becomes a battle, it's a bit like trying to row a boat that is in the middle of nowhere, with no fixed destination, take care. Degb

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