I’m a COPD sufferer and have been at end stage for over a decade!
( this sounds like some group meeting, be great if we could go cold Turkey and quit COPD Hey?)
Though I’ve been told recently ‘they’ don’t like such ‘negative’ terminology as ‘end-stage’ any-more, so I haven’t to say it! Well as a COPD suffer who is at ‘THE END’ I'm allowed to not really care what ‘they’ don’t like because being a very straight thinking/talking woman!! I recognise that taking away the phrase ‘end-stage COPD’ only eliminates medical failure to heal and the need to say “There’s nothing more we can do!” It also rids them of having to answer any of those "awkward" questions like "How long have I got?"...(Cynical? Yes I suppose I am) so the removal really is for ‘their’ benefit and not ours. Personally END-STAGE tells me where I stand, allows me to be in control with an understanding as to why no one’s treating me any-more and why I'm told to dial 999 if I feel a bit whoozy!!
Thanks to a self-absorbed GP who (despite my requests to turn up his deaf-aid) refused to send me to a specialist for many years; treating me wrongly for Asthma, my COPD was at end-stage before I was even diagnosed with it (Good or what?)
Though I’m lucky enough to have bucked the trend for some reason and am still walking around after 15 years, without having to tote the old Oxygen (Well when I say ‘walk’ it’s more like a slow breathy Zombie like shamble really) My constitution; luckily is such, that I’ve survived many bouts of Pneumonia and debilitating Chest infections; often without the aid of antibiotics, and come to within a day of having my life-support switched off in ICU (relatives around the bed and everything!!!!)
..and as if COPD (end –stage) isn’t bad enough, I’m now a member of the Osteoarthritis/Spondylosis club; which means my bones are a bit ‘hurty’ and I’ve to throw a copious array of candy coloured tablets down my throat each day, whilst waiting for various needle lead procedures at the Pain Clinic.
However I digress as to my purpose for posting. My Son is presently involved with artist Jayne Wilton in the production of an installation “Singing for Breath” which will form part of an exhibition in September at the Royal Brompton.
Here’s the link for Jayne’s Blog. I thought I'd post it for those who are interested in this breathing technique, also to give an insight into how even Artists and CG Film Animators are helping to get the message out and furthering the education about COPD.
hI - in rush for bus so briefly - love the project - I do already have the Royal Bromptons'singing for breathing CD as I believe the exercises help my vocal chords, epiglottis etc which all seem to have gone 'floppy' with COPD so it is part and parcel of my own exercise regime. I will study the project better when I am home this evening. Perhaps add a blog feature on it to my own blog at some stage 9has readers from all over UK plus the world). Catch you later .. Vanessa Smith
Hi Bajer nice to meet you and welcome to the site. There are a number of 'end stagers' here and have been for a long time. You have such a positive attitude and I am sure this is what is keeping you going. Carry on trucking xx
You should name and shame whoever ( or the hospital ) that didn't give you antibiotics, especially in ICU, to forewarn others.. Overlooked once is bad enough but more than that is negligent in my opinion.
Hello Puffthemagicdragon.
Oh it's a catalogue of misdiagnosis going back over 20 odd years!
A GP who 'knew better than I' and could see no reason why I should be referred to a lung specialist, when HE knew I had Asthma! He threw Steroids at me like sweeties and enough inhalers to keep you in smoke Puff themagicdragon (haha). My allergies were such that I couldn't take penicillin, and antibiotics just didn't seem to work, so that basically was that, no immunology referral for me.
But I was younger and managed to fight off infections, though it often took months. I ended up having to give up work as a manager, which naturally affected my quality of life. I was also in the middle of separating from my then husband. Also it has to be remembered that there was a time, not too long ago, when a patient didn't question their GP. Plus there was no internet to check these things out!! It was the Library or nothing....(maybe you're old enough to remember those days, I don't know )
Life's circumstances conspired to move me suddenly to another part of the country, where I'd to seek out emergency treatment at a GP's surgery; as I was very, very ill by this time. The GP was on holiday and a young Locum agreed to see me, despite it being just out of surgery hours. He did the stethoscope routine and for the first time ever I had a spirometry test. He stood back looked at me and said "This isn't Asthma, I'm referring you to the Lung Clinic immediately"
Thanks to that young Locum I finally got to see specialists, and a diagnosis of COPD and so the treatment began all over again!! A couple of years later I moved to another practice, and the habit there was that you saw any Doctor! So when I came down with a severe chest infection the pill throwing routine started again! One GP would give me one steroid and antibiotic and a week later; when I went back, it would be a different GP and they'd 'try' me on another. This went on for weeks and the COPD was exacerbating badly.
I was under the supposed watchful eye of the Pulmonary Visiting Service; a nurse visited weekly, but he was always more interested in getting the visit out the way (blood pressure, FV test..BYEEE ..he was a really 'nice' boy) and one particular week he failed to see I was suffering from Toxemia and in danger of going into respiratory arrest, due mainly to over medication. The next morning I asked my son to call 999 and that was the last I remember (apart from some pretty scary hallucinations) until I swam up from the depths of Coma 3 weeks later, to find I'm attached to all these tubes and there's a machine breathing for me through my throat...and all my family standing around my bed..crying and looking so very happy. Me? I was very, very confused !!
So you see Puffthemagicdragon, if I'd to name and shame I'd probably close the whole of one hospital and three or four practice surgeries and have to arrange to the exhumation of the original GP. It hasn't been all plain sailing since, take it from me, but that's life. Today society reacts differently to what was considered normal practice but a few years ago!
I've had many small victories against the NHS. I even had a whole clinic closed down due to malpractice and worked from within as a Ward Volunteer, liaising between patients on the Lung ward and the medical staff. But now I've got to the point where I know I've to slow down and concentrate on me and mine, if I'm to continue winning the fight against the damn awful disease. Had the systems such as PALS and QCC been in place twenty years ago and my personal life, not so fractured I'd have complained and gone public without any compunction. But all of this is old history...bit like me really hahaha.
I wish you everything that's good in the world puffthemagicdragon and thanks for replying.
Oh and 'nice' boy nurse! Well he was disciplined and sacked. He came to see me some weeks later and told me he deserved it and asked my forgiveness, and for what is was worth I gave it. I bore him no malice, it was, what it was. In a way it helped me face the inevitability of my own death and know that there's nothing to fear from it!!
Hi Bev - wow - what a story. You are amazing and inspirational and I love your humour
I can't help wondering if your battle with idiots and incompetents kept you going when, had you been on the 'right' medication, you might have buckled down to the expected pattern! With your strengths, probably not but we'll never know.
For many reasons, I know that's what I have allowed to happen to myself - hence my comment. I just wish I had some of my former strengths to battle on. I shall have to keep re-reading your story for inspiration!
Thank you so much for sharing and I'm sure the singing project will go from strength to strength.
Forgive me but I have a question about you being at 'end' stage for more than a decade, I too was diagnosed late in the progression, had chest infections etc and sent for xrays, always to be told they are clear, then very bad chest infection, sent for a CT and bang severe emphysema. 60% loss of lung capacity. my first specialist told me I had 3 years max, how have you coped so well?
Any advice from someone so experienced would be very appreciated.xx
One of the first things I’d advise is..don’t believe everything your specialist tells you! I mean giving you a ‘death time-table’ totally amazing!! I mean you’re going to be looking at your watch doing the countdown, come the end of those three years, how cruel is that! On the up side imagine just how great you’ll feel when its one second past the 3 years...! If I were you I’d have a bottle of champagne standing by.
I was merely told “That’s it, there’s nothing more we can do, but give preventative treatment”…Clear and straight to the point is how I like my Consultants, and for a change, he was just that. So I could shuffle off this mortal coil at any time if I go by his time-table…haha
Once you get your head around the fact that there is no miracle cure, that there isn't a twinkly Fairy-Doctor about to pop out with a magic pill and make things right, then you're half way there. The rest of your ‘days’ are down to you and the right frame of mind. I keep as busy as possible when I’m well. After all it’s only my body that has COPD, not my brain (even though my son does call me woollen headed, it has yet to be proven )
My own mother was 87 when she died from heart failure, due to an exacerbation of the COPD she'd had for 20 years, and towards the end, she asked me for a colouring in book and crayons. She’d sit for hours colouring in pictures, simply because that’s all the strength she had to do, but in her own words, she was keeping the grey matter active… fact is I found she’d been reading “50 Shades of Grey” the evening before she died….naughty minx.
Educate yourself is another thing I’d advise, learn about your disease. Education is important, that way you'll know how it progresses and what you can do to slow that progression down. Find out everything there is to know about it, then discard half, as that half will be the negative stuff.
Learn your limitations – This is a bit hit and miss, takes time and there’s lots of “I shouldn't have done that” moments. Your breath will feel as if it’s down in your shoes and hanging on in there, while your heart’s pumping against an empty fuel gauge. Once you find out how far you can walk comfortably….what weather you can’t go out in etc....you start managing your disease. But to be able to do this you need to work at it and it does take time. You’ll be going up against stuff which 2-3-4 years ago you could do with one hand tied behind your back…mopping a floor..easy peasy!!!! Not on your Nellie, you are going to huff & puff like Ivor the Engine going up the side of a slag heap. You could overdo things and unless you approach everything with the idea that you do it slowly, in your own time and give up when you lose breath/strength, then you’ll be safe to try. Only then can you decide if you need help with your mobility/care etc. If you do then make certain you get the right help, because resources are scarce and you’ll need someone strong by your side to fight for what you’re entitled to, so get help from someone.
Graze during the day, every day when you're well. It's a bit like herd mentality and the fridge door will probably be open more than closed, but eat 'a little a lot' rather than sit down to Yorkshire Pud and three of everything of an evening. A full stomach makes for uncomfortable breathing. If you eat out then have a starter rather than a main course or choose from the childrens menu. There's no hard and fast rule and most chefs will accommodate at formal 'do's', so have a word with the front of house staff. Besides you end up with a smaller bill too
Learn to say NO –
•No I can’t climb those stairs,
•No I can’t walk that far
•No I can’t park over there
•No I can’t look after the grandchildren (not because I don’t want to, breaks my heart not to) but they run rings around me, they could get into danger and I'm totally knackered after I've had them and it takes me days to recover!!
Stay positive! I know the days are long, the nights too, especially when you're awake and sitting on the bed fighting for every single breath all night. But the morning will come and your breathing will ease, just learn to triangulate and breathe through your diaphragm rather than your chest. I sing in my head, try and get my breathing to fit into the stops. Any song that comes to mind, usually one of those ‘earworm ones’! If your condition worsens then for God’s sake hit the three 9’s, don’t be a hero. I have the paramedics out a couple of times a year, and only once over the last 5 years have I been taken to hospital, and then I was allowed home after a few hours observation.
Remember if you have family around, ask them to stay away from you if they have colds or flu. Remember too that they’re the ones having to watch all of this. They love you and are having to deal with the fall out of your disease, so cut them some slack. Some family members’ deal with it by blaming you, after all you brought this on by smoking, they're frightened and possibly confused and fearful that they're going to lose you.. (if you're a child of the 1940 - 50’ s then try and explain, that we weren't taught the dangers of tobacco, and it was quite normal for everyone to have a fag hanging out of their mouth)
I’d also advocate laughter...lot's and lot's of deep gut trembling laughter. Your laughter will come out in short bursts, due to your lack of lung capacity and you will eventually sound like a wheeze on steroids!! But tell you what it doesn't half stretch your lungs, and though you may end up on the floor a breathless lump with tears running down your face, you’ll have just partaken of some of the best medicine in the world
Take care and may your laughter be breathlessly enjoyable.
Thank you so much for replying to me, I know the specialist was cruel but hearing that someone has 'end stage' and been around for so long has given me such hope. I have been diagnosed for 18 months now and have deteriorated, but I put this down to stress mainly, I wish I had someone like you in my life and that I was more feisty too! Everyone tries to be so positive and tells you it is not a death sentence, but it is and I have to get on with it. x
Hi Jude,
Thanks for replying it’s always great to meet a fellow “End-Stager” (we could start our own talking therapy group couldn’t we? Pity we wouldn't have enough breath left between us to actually do the talking bit hey?)
I certainly think my battle with life itself has stood me in good stead, that and coming from a family of strong, fearless females, (why, each one of my six; now quite ancient Aunts, can strike a man dumb just by lifting one eyebrow in his direction!!)
I confess that my life has been particularly hard and would be an epic novel in the telling, had I the time or energy left to write it; as everyone says I should. Battling with idiots and incompetents has kept me well entertained over my lifetime, I can tell you. I’m a people watcher! While some sit in coffee shops, I sit in hospital corridors and waiting rooms. Often while watching for my ticket number to come up on the board, I’ll spot the ‘lesser yellow bellied “jobs worth”, flapping about aimlessly or running around in circles – just as aimlessly! Now my life may have been made far easier if I hadn't been a victim of quite a few of these self-absorbed creatures; but it is what it is, and had I know at the time what I was looking at and what battles I’d be involved in due to contact with them, I’d have caught and caged the little f..lappers!!.
I know all too well the despair you speak of! That all-consuming grief the words ‘end-stage’ can cause some suffers. The strong person you were is no more it’s this terrible sadness you get as your strength of character gradually erodes and weakens under the onslaught of this debilitating disease. You who were the person others could rely on, now becomes the one who is reliant upon others! COPD/Emphysema call it as you may, saps the strength from your very core, it leaves you so very exhausted as some days you fight to pull in the very air around you.
It comes over me at times too and like you, I feel I've nothing left to give, there’s no quality of life …and that all I have before me is ….the END!! *sigh*….HOWEVER!! I refuse to allow this despair to consume me for longer than..well an hour at least, any longer and it could turn into self-pity, and that is something I don’t do!! Then of course there’s the total frustration of not having enough physical strength to open a jar of flaming’ Branson Pickle, to put on my lunch time sandwich (I get so annoyed with jar/bottle tops!!), possibly this is what keeps me going, I'm determined to get one top off under my own power one of these days!!!
Jude (joking aside) something I will say to you is this, we are not victims, we are survivors….we got this far didn't we? There’s still life to live, no matter that it is hard work and an effort and some days you just want to give up on it! We are stuck here for as long as it takes, so we might as well manage this dratted disease. Simple positive thinking!! We grab it by the throat and give it a darn good shake, just to remind it that WE are in charge and it won’t manage us, WE manage it.
I have 25% lung capacity, Osteoarthritis, Cervical spondylosis, Lumbar Spondylosis, why my bones are so thin they don’t even show up on an x-ray anymore (I'm a prescription junky!!) The reason COPD got to me was due to inhalation of nut dust (so much for working in the Health Food business…”Health” hahaha)
I don’t have oxygen (I know there’s a bottle somewhere with my name on it..but it’s not coming to my house ..just yet anyway) I manage the COPD, and all the rest that comes with it. It’s a way of life for me now, and besides I quite like waking up each morning…cocking an eyebrow at Death and smiling as he retreats (somewhat dejected) back into his corner…bless him, he keeps trying
Keep smiling through it all, we only get one bite of the cherry, even though some of us do crack a tooth on the stone!!
We are all different. I am " end stage ". I do climb stairs and I walked 2 miles the other day which is better than when I was diagnosed 3 years ago. I eat normal sized meals although my partner puts in the good stuff to help my emphysema.
The easiest way to open a jar of Branston Pickle is to give the lid a quick rap on the side with a knife. This releases the vacuum and makes it easy to take the lid off. The lid will screw back on again after
Did that...took me ages picking all the glass out of my teeth..and no way would the lid screw back on for me!! Boom Boom.! Haha
You sound as if you're doing things right Puff ...two miles hey? ..well done..two meters and I'm prostrate on the nearest piece of furniture
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- hence my comment. I just wish I had some of my former strengths to battle on. I shall have to keep re-reading your story for inspiration!
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