Went for my 1st COPD review at the hospital since discharge in February. According to the COPD Consultant I have end stage emphysema. I said does that mean I am on the way out. I explained that although I am 64 I still work 4 days a week. He didn't seem to have an answer to that just kept looking at the screen. He did, however say that I seem to understand my illness very well & that with COPD there is no set answer but that oxygen and inhalors were the only treatment that could prolong life. Fair enough. I just wish that Drs would think before they speak. He even said he expected to see me in a wheelchair. Sorry to disappoint mate. I am on 15 hours oxygen at 1/2 litre and on 1 litre if I move about. My problem is that I haven't been increasing the ambulatory oxygen & of course, suffer the consequences. Leaving the hospital was a nightmare. I got out at he wrong floor and almost collapsed in the AAU corridor but nobody offered me help or even a chair. I was literally gasping for breath. Eventually a wonderful nurse saw me outside & found a lovely porter who helped me get to my car.
All the best
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2malinka
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Hi there Malinka you go girl you sound like you have things under control despite what the cons say ,but dont forget to up yer old oxygen when you moving around.Its such a horrible feeling when gasping for air like that I bet you could've kissed the nurse that eventually came to your aid.Shame the cons had to say 'end stage' I personally think that could have a negative effect on some and we need to be as positive as we can re our illness there are better ways of putting things me thinks.Working 4 days a week doesnt sound endy to me :D. Happy days to you Janexx
My appointment in December the consultant was exactly the same he was a locum and didn't know anything about me, I came out thinking what's the point he might as well have said go home and die. But I saw another man a couple of weeks ago and he couldn't have been more positive, because I've been taking Azithromycin and I've felt so much better he decided to refer me for lung transplant, not holding out much hope but at least he cared.
So don't listen to much to what they say because they don't really know, this illness is different for everyone.
Kim xxxx
I agree I dread what will be said next to throw us into turmoil!! It is so different for everyone my husband is severe probably very but he works full time and we go pretty slow but we do go! Hospital visits are a nightmare corridors so long and everywhere is so far to get to - and the number of people that just look on! Onwards and upwards I say! Lots of love TAD xx
Agree about length of hospital corridors, I solved the problem by buying the lightest electric scooter I could find, Travel Scoot, it weighs only 30lbs and folds down like a buggy to fit car boots , this has been an absolute delight to have, I've even taken it for a 4hr ride through the cobbled streets of Bruges. Check it out online, UK residents will not normally pay vat.
I've had a TravelScoot for a couple of years now ........ absolutely brilliant things.
Hi I am nowhere near end stage thank goodness but I know there are quite a few on here who are and have been for a long time. So I do know you can live for many years with it and still maintain a reasonable quality of life. You have a positive attitude which will carry you a long way. Take care xx
Hi I think they need to teach these doctors to think before they speak. they may know what things are called but perhaps could say things in a more positive way. such as how are you coping with your condition. Perhaps a bit more training is required. I am glad you were on a positive day and can be up beat about it. you have given me a little more hope that I will be able to work a little longer. ask for a different consultant next time. Best wishes to you Irene
I go with everyone else. What a silly thing to say. I'm severe and still work 5 days a week 9.30 to 4. Ok It is only sitting doing accounts. I have trained myself not to use intercom and have 18 stairs to climb to ask a query or make a cuppa, and I do like my cuppa. My Consultant was so gracious. Told me to go conquer those hills and keep moving. Keep active eat well. Good luck xx
When I was first diagnosed I met with a consultant who broke the news to me with 'well you have severe emphysema, only 40% lung function remaining, meaning 3 to 4 years at best' I was devastated, he then wrote me a prescription and sent me on my way. I cried all the way home. Needless to say I asked to see another one who was lovely, explained everything to me, sent me for PR and listened. However, he too said he wouldn't need to see me again unless I needed him, this does worry me as my GP has no experience in my condition. I also work full time, and have 2 flights of stairs to climb to my office, albeit VERY slowly some days.
Hi Kad we will have to be the exception that broke the rule. My FEV1 is 32%. Keep safe stay well. Never mind how slow you climb them stairs, you climb them.
Hello Kad. Agree with every thing every one said here, although I am only recently diagnosed with copd I do unfortunately have another chronic disease I am living with, and doctors should think before they speak, you sound really positive and that says a lot about you, actually everyone here is positive, and that is the kind of people we need to talk to, doctors quote from text books, and not the individual person who is fighting this fight, someone said here they should be careful what they say to some people, how true that is, my brother was ill but looked really well struggling but copeing, doctor made big mistake by telling him he had 3 months left, my brother gave up and went before that time limit, so you keep on with your attitude, and keep on with the way you are, good luck and keep as well as you can ,, Angse
Your letter explains my ailment although I am not as sever. I just wish stem cells re-growth of lung tissue were an option. I did here of lung reduction but if the disease has spread to all areas... I guess a heart lung transplant is todays best option. Still wish I never smoked but my physics experiments to turn back time are doomed to comic strips.
Don't worry about it - I've been End Stage for 15 years. The name started years ago because during medical meetings breathing problems were the last item talked about. Therefore End stage. My doc told me this.
As I believe I've said here before, anyone who expects docs to have all the answers or to be anything more than the human full of foibles they are, is expecting a fool's dream.
Many docs are no more than shade tree mechanics but revel in the adoration heaped on them by the "Great Un-washed".
You say you're on 1/2 to 1 liter and have been told you've got 'end stage' emphysema; I'm on 2 liter at rest and 3 at activity levels and 'end-stage' has never been part of the conversation.
I met a lady at the post office the other day who confided her 27 year old daughter has lost considerable weight down from her previous 300lbs. but is on 12 liters.
From what I know of others as well, you don't sound that bad off and you may simply need to exercise (I know that sounds counter-intuitive) more perhaps on a program designed especially for folks with COPD.
Thank you so much, Nanci. You made me feel so much better. The reason I am on 1/2 litre oxy is because I am a CO2 retainer & apparently my levels should read between 88-92 as it would increase the co2 levels if I usesd more oxy. I don't know if that makes sense? I try the COPD exercise programme but it didn't work out as it was a bit of walk from the car park to the Leisure Centre . The place was air-conditioned & the staff not that well organized. Then I had a problem getting out of the car park. The barrier was't working and eventually an employee came to manually lift the barrier. By that time I was in a real state, breathless and stressed to the max. I do a little at home and lift some weights. Hope you are feeling good today? Once again thank you for repsonse.
Poor you, I do sympathise - what a shock that must have been. If you're 'end stage' then I must be halfway out!!
I am on oxygen 24 hours, 4 litres, and tons of pills and inhalers. I think you need a better consultant - sounds as if you need a lot more oxygen, especially ambulatory. Ask for an oxygen concentrator at home if you don't already have one. If they give you small cylinders for when you go out, make sure you get the wheely thing you can pull the cylinder along with so you don't have to carry it. But for heaven's sake USE IT! As you now know, there is nothing worse or more terrifying than being unable to breathe. Good luck.
I do have an oxygen concentrator at home and a two cylinders of oxy. The reason I am on 1/2 a litre is because I am apparently a CO2 retainter & 88-92 Oxygen levels are acceptable , because too much oxygen would also raise the CO2. I do try to use the oxygen when I move about but I strart to cough a lot when I increase level to 1 litre. Spoke to BLF Nurse who advised me to contact COPD Nurse. I may do that.
Afternoon 2malinka! That is really horrid of those that saw you gasping for your breath & didn't care to call for assistance from one of the nurses, that is well rotten, & above all very hurtful! I'm glad you got help in the end thankfully,I hope you get well soon!x
Unfortunately so i have been informed in the past, they cannot really tell you whether you are on the way out, but my suggestion to you is carry on working, carry on trying to do as much walking and breathing exercises that hopefully you have been given by the respiratory physiotherapist's at your hospital, moving is the answer, you stop moving everything will seize up, i.e. your circulation for a start, so if you dont move you will certainly end up being wheeled about and you will be on oxygen 24 hours a day.....I have had experience of all of this as my husband has not only COPD but other health issues and sadly passed away last September.
Thank you so much for your very helpful advice, especially about moving about. Although I do very slow yoga & lift a few weights , I was walking less & less because of the breathlessness & worried about my oxygen levels. I shall definitely try to walk more. I do have high blood pressure which is controlled by medication & poor circulation does run in my family. Sorry to hear about the loss of your husband.
Once again, thank you so much for your very helpful advice.
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Janexx
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