Don't Understand

My hubbie has COPD like a lot of people on this site , the GP stated about 4 months ago he was at the start of the end stage

he has since then been on antibiotics and steriods several times, he hasnt actually had an infection but they hoped it would stop what they though was one brewing

his oxygen level is 98/97 at rest goes down rapidly when moving but just as quickly goes back up on rest he cant do much other then make a cup of tea and spends most of his time sleeping. some days he cant even put a weetabix in a bowl due to lack of energy

what i cant understand one bit , is how can he be so ill and breathless with oxygen levels like he has, how can he be border line end stage also???

we dont have a consultant and now we dont even have a community matron as ours left the area and the new one is not trained

i have no support in regard to this illness and where it goes to from here , what to expect or not to expect

Can anyone advise me please if they have experienced the same

thank you

10 Replies

oldestnewest
  • Why not give BLF a ring I am sure they will be able to advise you.

    03000 030 555

    polly xx

  • the last consultant we had said she wouldnt see my hubbie if he didnt give up smoking and at the time he couldnt so now he has no consultant

  • as hubbies carer i find it emotionally hard to cope with, i also have MS and struggle with the symtoms of this and often find the fight with the medical people to hard to contiplate

  • Hi Mojo,

    I am on end of life palliative care and very well supported. My oxygen or sats are usually 93 - 94 at rest and degenerate rapidly on exertion tho I recover quite quickly. I can tell you from personal experience it is the smoking !!! The degenerative effect of smoking with COPD cannot be overstated but likewise the symptoms are greatly relieved when you stop.

    I make no judgement regarding the consultant, not in print at least.

    It takes breath control to do most things - talk, eat, walk, stand move your arms this requires reserves of oxygen which at our stage we simply do not have to call upon.

    Please please please get him to give up smoking. Contact your local respiratory clinic. Once he's stopped smoking try the hospital consultant once more and keep enquiring about the community nurse, mine is wonderful.

    Good luck Mojo.

    Chris

  • My sats at rest are about 90/91 which soon go down with exertion. It gets back up reasonably quick. I have been diagnosed with very severe emphysema, apparently Stage 4. The only difference between the time before I had it to the time after I had it is that I get short of breath very quick. Apart from that I'm ok. The only time I will consider myself End Stage ( I dislike that saying at the best of times ) is when I say " Goodbye cruel world " ! Until then I will live my life to the fullest I can.

  • A very good attitude for us all to bear in mind Puff.

  • I'm so sorry to hear of your (and your husband's) difficulties.

    Breathlessness is not necessarily connected to sats level. The benefit of normal, or high, sats is that there is plenty of oxygen getting to major organs such as heart, liver, kidneys, and does not mean we should be breathing easier.

    The not so good point is that your hubby is not getting any exercise, and this is vital to hep the lungs breathe better.

    I'm in full agreement with Stitch, that you should insist on a referral to a respiratory consultant. It is your right to do this.

  • dont understand why they gave him steriods and antibiotics when he has not got an infection!!that's no bloody use,,,,that's why you take them for goodness sake,,,you dont take them incase you have a flare up .maybey aye maybe naw ihave c o p d for the last 20 yrs and have through the mill i can assure you,,,,i have lost count of all the chest specialists consultants nurses doctors i have seen and iam 72 now ,i make a point of staying away from crowds ,as much as possiple,and people with the cold,when i travel on buses trains etc .i make a point of WASHING MY HANDS''''''as it is the germs ,that give you the infectiion ,,,,oh well hope this has been a help to you ,,,,godbless

  • I hate that word. End stage. Maybe we could be told just how many months we have left at that stage then. i have been at End Stage for a few years now. But still i go on. i have a very varied life, and enjoy it. I exercise (so important), take an interest in all around, smile a lot, get out on hobbies, holidays. My FEV although being at 25% seems to have held at that for the last 18 months or so. Please someone, put me out of my misery and tell me how long I have. On the serious side how long we live with copd, or how long before copd kills us is due to the person having it. Sit in a chair, do nothing but fiddle with the remote, and you will probably have a very short and boring life. Get up and go, Yes get out of breath often but enjoy life, and you could go on years. i prefer to call this stage 4. i know through my support page of some with an FEV of just 14. Yet although being limited in what they can do, they do have an active life, an interesting life. And fight the good fight. Lets stop calling this end stage. And why pallative care should come into it I don't know. Is that where I should be? I use oxygen. But that is not the end of my life. Oxygen extends it. i guess I am Mr Angry today.

  • Thank you all for your replies, i am encouraged that you all do excercise i only wish the same could be said of hubbie, he seems to have given up entirely . to be honest he does not enjoy his life anymore and his only hobbie was fishing which he genuinly cant do any more. I really do wish he would do more and i keep telling him he could be going on like this for years and attempt to do more to which he laughts and says i am a dreamer. We call him puffa train because that is what is breathing sounds like when he is about. I also agree End stage sounds like the end but reading your guys posts i actually dont think it is any more

    I have also seriously spoken to hubbie about giving up smoking but alas he says he doesnt want too and that he cant which means NO consultant :-( Yes i have told him how selfish he is being as its me that suffers also but at end of day its his choice. I married him for better or for worse. i have had the better lol

    no dr will commit to telling you how long you have to live, a hospital junior told be 6 years ago he only had 2 years to live so that really cant tell

    i was told it is on parr with lung cancer only with that there is a time limit that can be judged this cant and sometimes i wonder if it is better not to know

    thank you all again , sometimes it gets lonely struggling on my own

You may also like...