Very severe COPD

Hi everyone,( I don't use this site very often as I am new)

My doctor has asked me to accept a DNR formula which I now have but I don't fully understand this do I keep it with me all the time or by my bedside? I am scared as does this mean I could drop dead anytime? when I asked the doctor at the hospital he said a year maybe ten years!

Is there anyone that knows when you get to this stage whether my chances are ok.

48 Replies

  • Difficult dilemma. Have you anyone ---- family, friends --- to discuss it with?

    This is a very supportive site and there will be people here who have been in a similar situation.

    All the best and tell us how things go.

    K x

  • Thank you Katinka

    My partner looks after me 24/7 and I have very good support here where I live. It is difficult for me to come to terms with the situation but I try to keep a possitive attitude

    Eric xxx

  • Yes I have support here but nobody has really an idea of my condition but they are extremely kind xxxx

  • Thinking of you foxyeric. Bless you. Xx

  • Very kind Sassy xxx

  • Hello Foxyeric

    I don't think it's the doctors place to ask you to accept a DNR, he should explain what this means to you and discuss your options.

    You should be allowed time until you fully understand.

    This is a highly personal issue for you and your loved ones, to discuss and reach a decision.

    I know many members on here who are classed as severe, are coping with life, and hopefully be with us for a good many years to come.

    As for your doctors reply of who knows, a year maybe ten years, just goes to prove he hasn't got a clue !!

    I would get that DNR off your notes and rip your copy up, until you have reached an informed decision you are happy with.

    Velvet xx

  • Thank Very much Velvet I do have an appointment to speak to a specialist the problem seems that I have no reserve oxygen so they cannot operate on me. However, I am trying to get as much info as poss to help and guide me. Thank you Velvet your advice is sound.

  • Velvet gives the advice I would have given - get rid of it until you understand and agree with it! xx

  • Hello fox,

    I think this is a bit odd, but don't know what conversation your doctor had with you. A DNR is a directive to healthcare professionals not to resuscitate a patient if they 'drop dead'. Were you asked how you felt about that or if you agreed to it? It isn't and can't be a label saying that you will 'drop dead', or when that will happen. It's a directive not to take an action should the circumstances arise.

    I made a living will two years ago and included a DNR if and when I did the dropping dead thing. It's in my medical records. I've never heard of patients carrying them or keeping them with them - maybe they do.

    I've looked back at your last post, a year ago and you seem to be doing well managing your problems - it doesn't sound as though there's much change. If this is making you feel scared - and I'm not surprised, do please go back to your doctor and tell him how he's made you feel and ask to talk it through properly.

    Please take care of yourself, and come back to let us know how things go.

    Sue x

  • Information I am getting is helping me to calm down hopefully when I see the specialist on Monday I will fully understand the situation this condition of mine has gotten worse over the past 9 months I am fully confined to wheelchair and cannot dress or Bath without help. From the kind replies here which is making me more confident knowing that things are not that bad

    Eric xxx

  • I'm really sorry that things are so difficult for you, Eric, but it sounds as though you have lovely people around you to help. Probably all we can do just now is help you think of the questions you might want to ask on Monday.

    Sue xxx

  • Good luck Eric thinking of you x

  • Hi Watfordgirl I think you have explained what a DNR is very well. Unfortunately I can't say the same for Eric's Doctor. It is unacceptable to leave a patient in a scared and confused state over such an important issue.

    Regards. John

  • Yes I am grtting great advice here and most certainly on Tuesday will tell you all what I have been told and decided on Sunday I will be going for a scan as well so things are moving.


  • Hi foxyeric you certainly are getting some good advise and that is what our community is all about, helping one another.

    I would make a list of all the questions you want answers to then you won't forget anything. That is what I do when I see my Doctor and he just smiles at me when I pull my list out and start going through it. He has told me though that it saves him time in the long run.

    I look forward to your update and hope that all goes well for you.

    Regards. John

  • The DNR is suggested if your health is such that if your heart stopped trying to resuscitate you would be futile or if you survived you would likely be left with broken ribs, unable to breath on your own ever again, and most likely have suffered brain damage. It does not mean anyone expects you to die soon, nor does it mean anything is wrong with your heart. It means that your lungs are so damaged that resuscitation is not appropriate ... every attempt would be made to save your life up to the point where your heart stops on its own.

    You keep the DNR in a place accessible to emergency services if you live alone, along with your medical summary, contact info, etc.

    My husband also has very severe COPD and a DNR. He has been very severe for at least seven years and the DNR was only put in place 3 months ago. So the recommendation from your doctor is based on his or her assessment of how you would respond now and not on a label (like very severe).

  • You have explained this very well, to the point and correctly.

  • Because I'm having to dictate this because I shape too much to use the keyboard when I do use the keyboard I keep pressing the wrong button so after doing a reply I pressed delete and not sent however I do appreciate what you said I will add this to the questions I have for the specialist on Monday when the doctor said I have one to ten years I think he was replying there is no time limit you didn't demand I took the DNA we had been discussing it over the past 3 months my problem is I still didn't understand what it meant now I'm learning also on Monday I will be going or oxygen test as for the past four months I have called the ambulance out 3 x each time my oxygen level has been down to Almost 79 they say it's dangerous I also don't have a reserve of oxygen I believe this is why it will be difficult to resuscitate me thank you so much for your support it's just what I needed

    Eric xxxxc

  • Have you not been prescribed supplemental oxygen?

  • Not at all

  • The paramedics when they come here always say to you must get some oxygen

  • THAT would be at the top of my list! It is ridiculous if you need oxygen and have not been supplied it.

  • My point as well they said lastt year that my levels are not low enough for me to have oxygen

  • How low do they need to go? Low enough to need A&E several times?

  • It will probably pay you to ring the BLF helpline before you go see your doc as they will be able to advise on what you should say and how to say it. They are open office hours. Good luck.

    03000 030 555

  • Cool thx for that will do toci

  • My point on my list for Monday

  • Have the hospital not done blood gas tests? They are the ones that show if you need home oxygen. The samples are taken from the artery in your wrists. I was told mine were 6+ when they should be 8+. Now on oxygen. Hope you get sorted soon . I too dip to high 70s without and get very breathless.keepchecking yours and reporting to nurse or GP Joyce

  • I was asked this when i was 49 yr old and in hospital with high c02 retention so was gobsmacked to be asked that and just burst into tears and told them it was something i needed to think over

    They told me it means when we die they would not attempt to resuscitate us,,,,Its something that is put in your notes but ive never heard of anyone been asked this by their GP and i agree with Velvet if your unsure then get it removed

  • It was the foctor at the hospital that told me not my GP he said with the test resilts he would suggest I do it.

  • Ah i assumed it was your GP when you said My doctor......Its a massive decision. Dont let anyone influence you its your choice

  • Ok thx Mandyxx

  • I discussed this with my doc and decided to go ahead ( I live in West Berkshire), I got a small container into which you put a list of contactable people, list of medications, instructions for pets to be cared for as well as a witnessed DNR statement. Along with this I got two small green stickers, one for the inside of the front door and one for the fridge where the container is kept. Then if a paramedic attends and none of my family or friends/neighbours are around he/she will know where to look and advise accordingly.

  • Yes I too have a tin case that all letters medication etc are kept don't have the stickers but I think that is a goof idea.

    I have also done a living will.

    The case os with me at my bedside

  • PS - just to say a DNR isn't suggested to save money but to protect patients from futile procedures at the end of life, whether that's one or ten years. We have the right to die peacefully and with dignity.

    Sue x

  • Yes mine says futile xx

  • I absolutely agree with Toci that top of your list should be questions about why you aren't on oxygen. It sounds as though you could be and feel better with it. There are people here on O2 24/7 and they wouldn't want to try to manage without it.

    I hope you don't think we're interfering - I'd like a coach load us to be able to come with you on Monday.

    Good luck. Sue x

  • Oh my goodness no sue everuone has been really kind this is helping me to prepare for my meeting on manday I really appreciate everyones input making me feel less scared. A little about me I tend to say yes yes I understand when infact I didn't this has helped me get into a.mesz hehe xxx

  • Yes I have I was 2 points above what they call the limit hopefully after my appointment on Monday this will change xxx

  • Did that go through I keep pressing the wrong button xxx

  • Hi foxyeric

    I signed a dnr form a year ago as I too am now classed as severe. There is a small plastic bottle in my fridge with a note explaining where the purple form is located and also a green cross on my fridge and on my front door to notify paramedics /doctors I have done this. These are available from most surgeries as kits. My reasons for signing the dnr form is because I was told by my specialists that when my lungs eventually give up I will be brain dead soon after! I do not wish to be put on life support only to be a burden on my family later on. (My choice) However I have No intention of going anywhere soon and push myself everyday to do a little bit more to stay as healthy as possible. Copd is not a death sentence as long as you look after yourself.

  • Thx Bob I have had great advice from everyone which has hhelped me understand and relax I have made a list of things that I will ask when I go into the hospital 2morrow

  • Don't Give up! I've lost a brother to this disease and I've got another brother and sister who have it aswell. Fight like hell and enjoy everyday you have left. The more you fight the better youle feel! Chin up eric none of us want to go but its going to happen and I'm making everyday a good day and enjoying every bloody minute of it!

  • Damn right mate I will and thank you again

  • is your GP related to Harold Shipman ?

    Velvet is correct it is your choice not the GP if it was me I would rip it up and change my GP

  • It was the doctor at the hospital I say my dovtor as I have been seeing him now for 5 years it was my GP that I talm about oxygen and a consultant. Xx

  • I went into hospital with a very bad attack, they did not expect me to recover and although they could have incubated me they said I would not recover and suggested DNR. I agreed to this only because I knew how bad I was and incubating was the only option but what life would I have been left with!

    I have been very fortunate, I recovered and was on the lung transplant list whic went ahead. I now have a life and a lot to be thankful for. I just wish I could help more people get through this awful disease. Good luck. Sue E

  • I have thought about a trsnsplant on my list for tomorrow sue.xx

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