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End stage COPD

Posted , 8 users are following.

susan71068
susan71068

Can any one give me advice on end stage COPD please, it's my husband has this nasty disease, he's very poorly at the moment. What can I expect from here on in, honesty would be appreciated. 

2 likes, 29 replies

29 Replies

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  • broadsword
    broadsword susan71068

    Posted

    Dear Susan

    I doubt that anyone here can really give you particular advice for your circumstances. While COPD is not reversible, there are a number of medications that might help and many people live for many  years but like any other illness it depends on individual circumstances.The key for this and to answer your own specific questions will be a dialogue with your husband's GP. He may be under a respiratory consultant or have a respiratory physio. These are all good sources of information. If you are not getting that support then do push for it and do not be afraid of asking for what you need. By asking for honesty, I guess you have a number of fears about what the future holds. That future will vary greatly from person to person and that is why I hesitate to be more specific. It is not a wish to avoid honesty or candour but a real hesitation in giving you advice specific to your needs. If your husband becomes acutely unwell and is having real difficulties breathing , then do not hesitate to call an ambulance. Do not wait for a GP appointment, days ahead. 

    I feel for you and your husband and hope you soon get answers that can support you, with that greater knowledge of your husband's condition

    • susan71068
      susan71068 broadsword

      Posted

      Many thanks for your reply. My husband was diagnosed 10 years ago. Since then the last 4 years have been awfull. TB twice, still ongoing with that treatment. Repeated chest infections, the latest one being the nasty bacteria Pseudonomas, which has floored him. 5 times admitted to hospital this year, home now for one week. At present on Cloromycin nebulised for this bacteria, as yet not working in fact making the tightness even worse. The past week has seen a big deteriation in him. His strenght is totally gone and he's so weak. Slept nearly all day today. I fear the next few weeks. I want to keep him home because he has seen to much of hospitals and I hope I can achieve this and it's

       not taken out of my hands. Truly heartbreaking watching him become a shadow of the man he was, so frail now. I don't want him in any pain there is no need for pain these days x

  • broadsword
    broadsword susan71068

    Posted

    Dear Susan

    I am sorry your husband sounds so unwell. It must be very hard for you and my thoughts are for you both. I know you want to keep him at home but if the treatment is not taking early effect and he is so unwell, please do consider calling for immediate assistance to help manage his obvious suffering. He may need further medication/ oxygen etc which may not be available to you at home and may benefit him. I know he has only been out of hospital,a week, but readmissions are not uncommon and often needed if progress is not maintained.

  • susan71068
    susan71068

    Posted

    Thankyou Broadsword for the advice, yes I certainly will get intervention if needed. The paramedics have been called many times in the last 18 months. They are wonderfull, sometimes we have avoided admissions if he has responded to their oxygen, steroids etc, sometimes not and had he to be admitted. Seems medical opinion is divided concerning O2 at home due to his levels usually remaining pretty good. 
  • trish40354
    trish40354 susan71068

    Posted

    Hello Susan

    I can't help you with your question but do want to send you and your husband a big hug x

  • cofalot
    cofalot susan71068

    Posted

    You could try Health Unlocked - BLF - they have a lot of folks with COPD and are a very helpful bunch.

    love cx

  • jeannie4243
    jeannie4243 susan71068

    Posted

    Hello Susan

    Just read your message,as i have been helping my daughter to move this week. First of all may i say i have read the replys, and i think it is lovely all the care, thought and support every one gives i think when you are going through what you are it helps a lot.  Secondly i would like to say i know how you are feeling as i have and am going through it with my husband Joe who is 76. Last May (2014) he was rushed in to hospital with pnumonia, put in I.T.C. and i had to do a D.N.R. for him.  And to be honest from then until 9 weeks ago he has just been in and out of hospital with bacteria infections and Psudamonas.  And like you i kept thinking the worse. But after a few trips to hospital and going over the same old things, i listed read up and got all the information i could, then i told them what i wanted doing. Because at the end of the day you know your husbands illness better then anyone. It did take many months, and Joe had two bad falls one which took 22 stitches (he is diabetic to). But slowly things have started to work.he has ventolin nebulised 4 times a day, clomycin nebulised 2 times a day, spivia inhaled, ventolin, Seretide 500 inhaled twice a dayand carbosystin 2 twice a day also oxygen for 16 hours a day. And i just have to watch everything, as our consultant says different people have different symptoms of showing a infection, so i am always asking how he feels have a thermometer at hand. And i have found this patient line of great support.  I do wish you and your husband well, let me know how things are going. i will be thinking of you

     

    • susan71068
      susan71068 jeannie4243

      Posted

      Hello Jeannie, when I read your post my heart skipped a beat and for a moment I thought we could be back in with a chance. Sadly I had to go to a meeting with my husbands consultant on Thursday, I was given the most devasting news that I have yet to come to terms with. My husband has had 5 999 admissions this year, each time having to go straight to Ressus. I seen him deteriate badly this year. His last 2 admissions told me in my head that we were in a bad place. Apart from his COPD, he has had 2 bouts of TB and been on 2 year treatment plans for both of them, the first bout he seemed to be doing fine the second one, not so. Then Pseudonomas reared it's ugly head and didn't respond to any of the IV antibiotics he was given. He had the Colomycin challenge test and all seemed fine. We were given a 3 month supply, 2 weeks into it he was having dreadfull tightness in his chest whilst nebulising with it. It had to be stopped. I was told that now his lung function is so very poor then the outlook is very bleak. He has always had oxygen every time he has been in hospital, went a few months ago to Ox Assesment Clinic, he couldn't complete what was asked of him. We were always told every time he was in hospital that he would come home with Oxygen, that never happened and not for the want of trying. His Resp Cons said he was to have it then the dam Resp nurses would get involved and say no. I have witnessed the most appalling fighting for breath attacks since his discharge 2 weeks ago, I actually thought he was going to die every time it happened which was frequent, day and not. I lost it with the Cons and the Resp Nurse on Thursday and told them I would not be leaving without the assurance of Oxygen at home and speed was of the essence, whilst it will never cure the poor man I knew it could make him more comfortable. Lo and behold that very evening it was installed in the house ! Unbelievable. My heart just breaks and the future is bleak, we are now facing palliative care, my wish and his is to remain at home. We have a DNAR in place which means all intervention will be given if required but no CPR. I had to have the conversation with him when I came home, and typical of the loving and caring man that he has always been, he took it like a man and tryer to make a difficult conversation as easy as he could for me. All we ask is he can be peacefull at the end, seen too much fighting for breath, not to much to ask is it ? My love and thoughts are with you all in the group and do all you can to prolong a quality to life. Xxxxxxx
    • susan71068
      susan71068

      Posted

      Jeannie, I should add my husband is on exactly the same meds as Your husband and more due to his TB. He was 63 in April this year. Also advised if he wants to stop his TB meds then he can. ! X
  • jeannie4243
    jeannie4243 susan71068

    Posted

    why would they say it is ok to stop TB meds.  And yes i realised that your husband and mine where on the same meds, i was just saying that it has taken a while for joes to work as he has rhumatoid as well, and that maybe after a while they will work for your husband i do hope so
  • susan71068
    susan71068

    Posted

    They have said he can stop his TB meds and RA meds because there really is no hope now. His body is thin and frail, he has no muscle strenght and is very week. He has said himself he really can't go on like this. He can hardly get to the toilet on his own, needs help to wash and dress. No appetite and sleeping a lot. Sadly and it is so very sad as he is only 63 he is a shadow of the man he was. Truly heartbreaking. I've been blessed having him for my husband and I can't bear to think if life without him. X
    • jeannie4243
      jeannie4243 susan71068

      Posted

      Oh Susan i do not know what to say my heart goes out to you and your husband, also he is so young.  I can not think of anything to say that will make it eaiser for either of you, and god bless him it must be awful for him being so ill it is such a nasty illness, and it is awful for you having to watch and feeling you can do nothing positive.  And like you i have a good husband and it makes it worse. Though things for me are eaiser then yours at the moment. Please take care and love each other. I can not think of anything else to say except my thoughts are with you both, please keep in touch if you have time x
    • susan71068
      susan71068 jeannie4243

      Posted

      Thank you Jeannie4243, I hope your husband remains as well as possibly can. I'm sure like me you are doing everything you possibly can . I will stay in touch with the group, the common thread between us and the wonderfull advice from people who truly understand is exceptional. And it's not over till the fat lady sings. Having said that, to my amazement today the situation is better, it's far from great but I'm happy with anything for him at the moment. Seems brighter today and slightly more mobile, going to toilet and standing to look out of window into his beloved garden. Appetite has been really good so far. Asked me for 2 boiled eggs, which quickly appeared in front of him, he ate them ! I was thrilled, no tears today, going to embrace this day. My goodness he's just requested crumpets, told him I'm going to book him into weight watchers at this rate, need to keep a modicum of humour don't we. Xxx
    • jeannie4243
      jeannie4243 susan71068

      Posted

      Oh so pleased Susan to hear your husband feeling a bit better and good sigen to be eating. I found when Joe was really ill first thing to go is food,then comes back when they are feeling a bit better.  I asled for those complan type drinks fro doctor i thought at least he was getting built up, and look forward to seeing your husband on front cover of Weight Watchers, good luck
    • susan71068
      susan71068 jeannie4243

      Posted

      Thankyou Jeanie, well it didn't last long, yesterday afternoon we were back to what has now become our normal. Horrendous night again for him. No food at all today, some fluids. Had a pressure overlay mattress and cushion delivered today. Also a commode, I'm afraid the commode was the last straw, I just went to peices when I saw it coming into the house, so silly of me but it overwhelmed me. I need to sleep and recharge my batteries but this won't be happening. Hope your husbands doing well at the moment and you too my freind. X
    • jeannie4243
      jeannie4243 susan71068

      Posted

      oh Susan i am so sorry, and i can understand how you feel it just over whelms you. Do you have anyone to help to give you a few hours sleep or rest, aas i know you want to be there and he needs you but you need a little break.is there nothing they can do to make life eaiser for you both,thinking of both of you xx
    • susan71068
      susan71068 jeannie4243

      Posted

      Hello Jeannie, I have The Hospice At Home Nurse coming tomorrow to talk about our needs and what they can offer. She did say I could have a night sitter a couple of nights a week but I declined the offer, don't want him waking up and seeing a stranger. My granddaughter is staying tonight and she told me to go to bed and she would stay up, again I declined. Today we had to start using the dreaded commode that he so never wanted but it had to be done, I can't have an 18 year old girl doing this for him and he certainly wouldn't want her to help with his toilet ing. I'm happy to carry on giving all the care that I can for him, he's the perfect patient. Thankyou for your kind thoughts xxxx
    • jeannie4243
      jeannie4243 susan71068

      Posted

      Oh Susan what can i say, but my husband Joe is like yours so good to look after and i am like you (evan though i hand out advice) i like to stay with Joe and more so through the night it is good to have someone who loves you so much in those wee dark hours.  And i do agree it is not right for a 18 year old to do things like the toilet etc, and not good for your husbands dignity, this illness takes so much away you have to be left with something. But maybe some one who can just give you an hour or two during the dsay for a cup of tea and feet up. Hope all goes well with nurse xx

      c

    • susan71068
      susan71068 jeannie4243

      Posted

      They make it so easy for us don't they, bless them. My daughter works full time but pops in and out, lunch breaks etc. a lovely lady from St Giles Hospice has just left us after a lengthy chat. You can imagine the conversation, I was doing ok till I saw tears rolling down Roy's face, unbearably sad. She asked if Roy wanted to go in for respite maybe a week to help me as well, very kind but no thankyou, we are staying home together.  That's for sure. My love and best wishes to you and your lovely husband Joe. Xxx
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