At last we have had a visit from a respiratory nurse. That is the good news the bad news is that she said that my husband has only about another year.
It is very hard to hear that even though I knew that my husband has 'end stage' COPD.
But at least she has sorted out my husband's oxygen. He was put on 10 but she has put him on 6. We might even manage to get him on liquid oxygen.
He is 74 on Sunday and we are going to Whipsnade Zoo with my daughter, son-in-law and grandchildren. We will have to take several cylinders but we are determined to have a good day out.
I just wish that we had been in touch with a respiratory nurse before at least we have someone to talk to when we are worried.
What are other peoples experience?
Jean
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jeanghost
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11 Replies
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Jean I am so sorry to hear your bad news. I can not relate to experiences re the oxygen as for some reason my Dad was never offered it (he passed away last year age79 from COPD )
He was always given it at hospital but not at home,I think his final days would have been better from what I have read here. I can only say that what he did was to try to make every day count, dont be afraid to laugh and have fun make things as normal as you possibly can under the circumstances build up memories and make time for each other..Have a lovely day at Whipsnade zoo I used to take my son there years ago. take good care of yourself, too thats important.My thoughts and prayers are with you both, God bless. Julie x x
Hiya Julie, just to say that not everyone is suitable for oxygen and it's only given as a last resort as it can cause a whole host of other health problems in itself. I have noticed that people on oxygen seem to do so much better than those who aren't but a lot of us have good blood gases and don't need it, even though we can barely breath! I don't understand the medical part of it, but perhaps someone will come along who can describe it better than me! So don't worry yourself thinking your dad may have suffered less had he been on oxygen, he probably wasn't suitable for having it. Libby x
Libby thank you so much for your answer that has really helped to put my mind at rest, as I had been fretting about it since he died thanks so much. Julie x x x
So sorry to hear your news Jean. Now yu know you have to make as many days as possible count. I would love to take my granddaughter to Whipsnade. I have very fond memories of going there with my beloved dad and all my brothers and sister. We had elephant rides. My children loved the train - Umfelozi or something. What a fantastic zoo. Chloe would love it and I am sure you will too. Hope you have lots of fun filled happy days. Alison
Very sorry to hear your news. May i suggest you ask to be referred to the local hospice for his final year they are so kind and so helpful and offer such a support network, far more than the local respiratory nurse can offer. Palliative care can make a huge difference, it has to me and i strongly urge you to get them on board. Good luck xxx
I am so sorry to hear your news. We were only referred, after I asked when my husband was very ill, to the respiratory team who are marvellous. Having the reassurance is fantastic. I hope you have a fabulous day at the zoo. Perhaps you could ring the BLF helpline, they maybe able to give you more advise about what is available to support you and your husband. Take good care. TAD xx
Hi Jean, sorry to hear your news, sounds like are going to make the time left a happy time and like rattles, would ask his nurse about palliative care which can make a big difference. Best wishes. Libby x
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Alison
Saddest news ever 
Oxygen referral
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