Hi guys I've read lots of different posts which got me to write this.

My dad was diagnosed with last stage copd about 6 years ago. Hes had a bad chest since the age of 2 but smoked as a teenager growing up. He quit smoking about 18 years ago and hasn't had a cigarette since. In the 6 years prior to diagnoses he's been pretty good keeping his condition under control. About 2 months ago he required a doctors home visit which resulted in 8 steroids a day and a course of antibiotics. But 2 weeks ago I discovered him motionless and unresponsive. Long story short he was taken to hospital. They said he had a chest infection and acidosis. He was instantly put on a non via mask and has remained in a respiratory ward since.

He's due to come home tomorrow and we've just had a concentrator put in to ensure continuous supplie of oxygen. It will be 0.5 litre per minute also he'll require to wear the non via mask at night times. I'm unsure of his stats although his lung capacity isn't good and his oxygen levels are around 80% whilst on continuous oxygen. The respiratory nurse says he's lucky to have a relatively good 6 years, but I can't help ponder what is next for him. Nobody will give me a answer just saying that his copd is really bad and we've just got to make his life as easy as possible. Can anyone related please x

10 Replies

yes Mellisa :)

i'm an on my own, on end stage copd, oxygen etc,[with other underlying illnesses ]

life doesn't stop there in the least, although i have my bad times,[decent times as well :) ] i still keep plenty in front of me, to try look forward to.

many folks have had "end stage" for many years, i believe "end stage " is only a "saying " [off course he may not be diagnosed as end stage }

please give your dad my kindest regards

lots of love and kindness jimmy xxx :)

Hi Melissa I am so sorry to hear about your dad. Jimmy is right though - you can still have quality of life in end stage and carry on for years. Have they put a care package in place for your dad for when he comes home? This could involve several medical professionals who work together to ensure your dad is as comfortable as possible. x

They've said that they will send a occupational therapist out but because of the area we have to attend appointments rather than them come to the house. His mobility is limited walking to the toilet is a struggle and the stairs are tolerated if he's had a calmer tablet. He can't exhale the co2 anymore is this just the condition worsening.

"Because of the area we have to attend appointments" That is something that makes me so very angry; when did this policy of not doing house calls become so popular?

In the days when there would have been at most 2 GPs in a practice they held surgeries twice daily then did house calls as a matter of routine - now the attitude is "If you're too ill to attend then call an ambulance" and they wonder why they get bed-blocking! Their pay is astronomical compared with the days when GPs were the family friend and counsellor, but from my experience the service is far from improved.

Double check the O2. 0.5 litres per minute seem exceptionally low..........


Hi Melissa, I've only just seen your thread. Hope it's not too late to reply. When you say non via mask, do you mean a bipap machine? I know different people have different names for them. It involves a close fitting mask that forces the breath in and out and helps get rid of the excess CO2. They are not particularly comfortable but once you get used to it, you can sleep well wearing one.

I am asking because if your dad has only just started using one, he might begin to feel a lot better soon. I don't want to raise false hopes so I'm sorry if this doesn't apply to you, but I am also a CO2 retainer, though I'm on 1 litre of oxygen, and when I started on the bipap it made a great difference to my well-being. My COPD was diagnosed 7 years ago and I've been using a bipap for 6 years now. I am still classed as 'severe' because of my lung function, but most of the time my breathing is okay and I feel well. I won't be running any marathons but I can now walk (slowly!) on the treadmill for 20 to 30 minutes, though when going out I use a mobility scooter.

If you want to keep an eye on your dad's sats, you can buy a pulse oximeter for about £20 or less online. Also, could you get a stairlift installed if your dad struggles with stairs. If he is registered disabled I believe you can get help with the costs. I'm sure someone will be along to correct me if I'm wrong about that!

Your dad is lucky to have you looking out for him. Let us know how he gets on.

Best wishes, Jan

Awe thanks everyone for the response, I did question the 0.5 oxygen but they said they didn't want it to increase it. Yes a bicap machine is what he's using the nurse said that if people need tgem at home it's usually long term rather than short. He seems more relaxed now he's in home surroundings he's got 7 days left of steroids I am more of a worrier than your average person but feel alot more positive from everyone's replies. He also has constant back pain I know bones weakness is a side effect of the disease. He's a frail man at 9 stone and hes 62 years old, I'm not sure how many bad episodes to expect and prey winter is kind to him. Love to you all!

Just want to say welcome to you Melissa and I can see you have had some great replies already. I do hope your dad will do better now he is at home. Wishing you well too. xxx

What a lovely loving daughter you are, I'm sure this makes your Dad very happy .

Hello Melissa, my name is Kim. I too have copd, stage 4, only breathing off 24 percent of my lungs. This is soooo strange to adjust to, like for your father I'm sure, but for the most part keep him comfortable, do breathing excersises and  try to excerise the body as much as possible. How bad is he?

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