They sometimes refer to Stage lV as End-stage emphysema but don’t think it means you will die soon. I’ve been stage IV (FEV1 <30%) for 10 years now, following pulmonologist’s strict orders...stop smoking, exercise, and take meds.
Yes, I go on waiting list in September for a lung transplant (single or double is a new question).
But I read about one emphysema patient still going strong after 17 years at stage IV. He lives alone, hoovers the carpet, does the shopping, and prepares meals.
It’s good to keep going Sharp5Flat13 and a positive mental attitude helps. Keep doing what you’re doing. Xxxx
Thank you sassy!
I agree, I don’t think it means you’ll die soon. Keep well and keep playing the guitar and I hope you’ll get a call soon once you’re on the list and have a better quality of life again 🎸
Thanks, HHp. As you know singing is a great exercise. I was hoping our RT (plays guitar as well) would incorporate it in our pulmonary exercise class... Think about holding a note...it's just like breathing out through pursed lips...very slow...which helps get all the stale air out.
The real problem is the particulates from the inhaled steroids (Breo, Advair, Trelegy) take a toll on your pharynx and vocal cords.
I sing 🎶 and play guitar but now find that that sometimes I can't finish a verse because run out of breath or I can't get the next verse in quickly enough during a song because of can't breathe in quickly enough, if you know what I mean. So will have to start singing 🎤 slower songs lol. Best wishes Music
Music, do you feel better after singing a song or two?
To be honest lm not really sure if singing makes my breathing better
and that is a question I would have liked to ask one of the everly brothers who died a few years ago who also had c o p d but not sure if he died because of c o p d . I am I think still at the mild stage at the moment and do find swimming and walking helps me and warm weather The thing is with this is that it seems to effect everyone different. Best wishes Music
Absolutely agree..RedSox...but that is one thing I can no longer do. If I sleep 4 hours straight- through, I consider it a success. Usually it's 2 or 3 hours, then up for 1/2, then 2 or 3 more.
That is the same with me with my sleep and I just live with it now , It's very rare that I can sleep right though the night. Best wishes Music
Very reassuring and very encouraging. Thanks for sharing 
You are so right Sharp5Flat13 . It does not mean the end at all. I also was "severe" and end stage for a long time.
I think your double or single transplant depends a lot on your underlying disease. Some will require a double , no exceptions like Cystic fibrosis, but some like my disease you can do very well on a single. Good luck with your transplant. 🍀
Cas xx 🙋
i can only wish i get up every few hours for a wee because of my stupid prostate.
I have the same problem Andy, only being female I don't have a prostate????
Let’s hope not, pg1. 🙃
After 5 children, my bladder has been squashed so many times, it's given up. 😜
loll it does my head in i get no sleep hardly
I have been at "end stage" for about 17 yrs. My last FEV1 was 19% a couple of years ago. I am 76 yrs young and still active. On 1 LPM oxygen through the night. I will not even consider transplants. My motto; I have C.O.P.D. but C.O.P.D. does not have me.
Breath easy exercise often. Rgds Dave.
Fantastic, Dave! Your history makes me rethink transplant therapy. Thanks for sharing!
I think there is different levels of stage 4 as i was stage 4 not needing oxygen but then a bout of flu and double pneumonia left me needing oxygen pretty much 24/7.
Apart from that, good luck with the lung tx, i had a double tx last june and now do live life, the change is unbelievable and i consider myself a very luky fella every morning.
Pleased you are doing so well
Cheers, Joyce.
Sorry for the short answer, i had a double tx, june last year.
Fabulous, simplesprout. Do you feel they way you did before the COPD/Emphysema set in?
No there is some small differences but i can now live a life that would have been difficult to live before the tx.
Can you give me some examples please, simplesprout? More endurance, walk farther, lift heavy objects...that kind of thing.
I've always wanted to do a small tour of Europe playing small coffee houses or clubs. Now with the COPD it's pretty much eliminated any vocals from me (and I wasn't that strong a vocalist to start with). Again though, singing is great exercise for COPD.
Another idea might be to conduct singing sessions for COPD patients...with me the most humble leading the group.
I've been writing and learning chord melody arrangements on guitar, so I could reduce the number of vocal songs (technically a "song" has lyrics...).
I could probably carry an acoustic guitar (you carry your own instrument) but not much more...so not even a small practice amp.
i can walk 4km no problems now, it took a bit of building up to but i really enjoy taking my dogs out, ive just bought a bike so intend to get out on that once we get past all these bloody storms.
one thing you will find out is that there is no norm for tx patients, everyone is different and will respond to the op differently so its not possible to compare or expect a future outcome given some one elses experiences. How the op would effect your future singing career i couldnt say, however, if everything went well i wouldnt have thought a trip around Europe would be beyond your capabilities, i have heard of tx patients taking up hill walking and many other strenuous activities, so check out the New Start charity website to see how well some tx patients do in the transplant games each year. if i can heip you with anything else just ask away. best wishes.
Cheers, and best regards!
Good to read your positive post. Sure it must be a comfort for those in the same situation. Hope you get many more years to come.
It's refreshing to read all the positive responses to this. I'm at the so-called end-stage which has depressed me but it's obvious we are all different. Just getting through 3 short bouts in hospital over Christmas and New Year, final admission being Type A flu. Was on oxygen 24/7 for about 10 days but am now managing without it unless walking outside home. Not always easy but looking on the 'bright side' does help to alleviate the fears that we all may have at some time or another. Prayers and thoughts x
I know exactly how you feel, Sparky. I escaped the flu this year but the two years prior it had the best of me. Oxygen 24/7, and barely able to walk 3 meters without becoming short of breathe, and hyperventilating. VERY SCARY!
This is what the RT calls “hitting the wall”. He says constantly that if you feel you’re going to “hit the wall” (in the exercise class) to stop and have a seat. Some people come to the class but don’t exercise...just making it to the class is their exercise.
I have symptoms that are related to every stage of copd.
I don't know what to think!
None of my medical people will tell me what stage I am, but, I am getting more forceful about knowing things now.
I was at my diabetes clinic about mid January, my consultant, didn't like the way I was dragging myself around, so , admitted me into hospital and I was in for about 6 hrs, I didn't want to stay if I was ill! They let me go because I wasnt presenting any heart failure!
Then, about 2 weeks later, I called an ambulance , because I woke up really late, with my poor kitten crying!
I swear, I couldn't move, I lay like that for about a hour, and then I thought, I have to call an ambulance, when it got here, I had to crawl to the door, and opened it b4 they kicked it in, I used my Walker to hold myself up, but, backing up, I would of fallen, but , they managed to stop me!
I spent the day in A&E, but , wanted to get home to my baby boy! They happily signed the discharge papers, & gave me chit to get a taxi home .
Now, I got bad chest pain on Thursday night, it worried me because, the symptoms were , a very strong pain in my breastbone, plus, my burning lungs as well as a sort of nausea, they brought me to hospital and I was admitted in for 5 days , because they want to change all my meds, I have lost 9 or 10 kilos of weight in the days I have been in, so, like I suspect it, retaining water! My copd, just seems to be the bane of my existence!
I now seem to have "flare ups " to some degree , at least twice a day, every day! It really is wearing me down!
I am going to end up in a nursing home at this rate, wow!
Take it easy, Fleurbaby...baby steps...but push for a diagnosis. And is there anyone to check on you on a daily basis when you”re home?
I had the shit hit the fan today, my nurses on the weekend kept asking me if the doctors saw me at all! I said no! I think I must of accidentally insulted my respiratory consultant, because she has only seen me twice in 2yrs (not at all in the last 18 months), for christ sake! Am I not allowed to ask questions? My health is at risk here! The demi-gods (consultants...nurses call them by that name) said they couldn't find anything really wrong, I said, what about my, badly ulcerated tongue? Go see a dentist I was told.
I really pissed him off, they only pay me lip service , I am damned angry, the doctors wanted to send me home today! I said, I was supposed to be in the hospital for 5days? You were supposed to be observing me, lipservice , you are just covering your butts for the future, if I end like most senior bachelors! Found dead in my pensioner flat! Because, I have lost my value as a human being, hospital nowadays, are only interested in the beginning of life, & the end of life! Middle aged blue collar males are at the bottom of society lists !
I was right! I told the nurses, that I wouldn't see the doctors til Monday, & you watch! They will say they can't find anything else wrong with me & are sending me home today.
They did! Exactly that! Anyway, thanks to the nurses , I am here another night! I have been swabbed in the throat! My phlegm was tested, it came back with results of growth in bacterial, meaning infection!
Result?
I am getting occupational health, into my home, to give me, possibly a ramp or new rails to assist me to climb the 3 steps to my flat,
I am getting home physiotherapy
I am getting 7 day home care , for showers, cleaning etc. Shopping etc.
I am getting supervised walks
A nurse specialist copd was sent to me, I said, why wasn't I sent to you 2yrs ago? She said, that is what I am demanding to know!
She told me something about copd that I never knew! When you have an exacerbation! You have smaller recurring exacerbations for 6 to 8 weeks later!
I said! Like an earthquake? She said yes!
Keep Positive Sharp5Flat13. Thats all we can do to keep proving them wrong, As long as your happy and have a quality of life thats the main thing Hope you have a good day Brian
I have been at stage 4 14 yrs next April...due to have a double lung tx assessment purely based on age I turn 60 next year and always admitted to wanting a tx pre that age, my assessment was put on hold from April this year due to Covid and undettered I carry on doing what I do best, excercise walking daily, cleaning now due to lack of cleaner and shielding ..which is ongoing for me and avoiding germs best I am able outside of covid as anything is a big problem for me..so I shield happily and have done over a decade every bug season..genetic lung disease aatd..sister disease to cf..aged 59....diagnosed aged 45 and given 2 yrs to live..shows what we can do and keep doing with the right outlook and best attitude in coping with something they told me would kill me very young..I hope that assures a lot here.
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