Hi everyone, I am new to the group! I was diagnosed with empysema five years ago and have been relatively well during that time. My health has recently deteriorated and I have been commenced on 16 hours oxygen and a mobile concentrator for going out. This has come as a shock as I only retired from nursing last September at the age of 66, and always regarded myself as reasonably fit and active. I would love to hear from people in the same position as me, and any tips or advice anyone can give ( ps I gave up smoking 15 years ago)
thankyou
Elaine
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getiton
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Hi Elaine, welcome to the forum. I’m carer for my hubby who has sarcoidosis, COPD, heart disease and chronic back problems. Hoping you get more replies soon.
Ru benefitting from 02? Do keep as active as u can,drink plenty of fluids and avoid people with coughs,colds,flu etc as exacerbations often accompany viral infections.u could ask to b referred for pulmonary rehab
morning Elaine, I think we are similar,as I got Ckd just after lockdown,then got diagnosed with emphysema and am on 15hours Oxygen (and a portable),and I stopped smoking in 2011.
The main problem I’m having is flying and to be honest I have given up trying. I am now looking into cruising from uk. I’ve had a few holidays in uk and oxygen has been supplied to the hotels without any problems.health wise I am ok ,just need to watch my diet.i am almost 74 enjoying life while I can 😎
Hi Vespa1950, thankyou for your welcome, Yes we do seem to have similar stories, I must say I didn’t expect to be on oxygen so soon after retiring. its good to hear you are enjoying life. Can I ask is it difficult to go abroad? I’m thinking Spain). I imagine it will be expensive with the fit to fly test, insurance and hiring equipment?
Don’t get me started!! I did a fit to fly test last year ok, but then trying to get portable oxygen on the plane ,oxygen abroad to sort out and a holiday all in the same month was impossible.that’s why I’m looking into cruising.good luck.
Hi Elaine, welcome to the forum. I don't have emphysema but I was prescribed oxygen therapy 15 months ago after suddenly becoming ill. I was 47 and still working at the time. It's definitely a shock to the system.
Hi MoosterMoo, thankyou for your welcome and hope you are managing ok. 47 was very young and iI am sure it was a big shock. I find it hard to think I was working 12 hour shifts only eight months ago! Are you still on oxygen and did you find it hard to get used to?
It's definitely a big shock. I'd just returned from a holiday in Spain, felt absolutely fine then started coughing up blood. It took them over 4 months to diagnose a lung condition, by then it was that bad I needed oxygen. I went through a grieving process for such a long time, grieving for the life I once had and the kind of life I won't have. I'm still on oxygen but now only on exertion, before Christmas I was on it 16 hours like you. It took me a long time to get used to it, for a while I didn't even go out. I was referred for pulmonary rehab in February and met some lovely people and we still meet up at the gym once a week. It gave me the confidence to get out there. I can't say it's easy, but most things are do-able. I soon realised, life's too short to sit at home moping. You've got this 💪🏼 x
Do consider asking your GP to refer you to Pulmonary Rehab. Also see if there is a Breathe Easy Group and a singing for lung health group near you. All these will help.
hi Ergendi, I am currently on the waiting list for pulmonary rehab snd hopefully it will help. I am not sure about breathe easy but I will look! Thankyou for your advice and hope you are ok.
A few Breathe Easy groups struggled to survive after Covid. However, when I was first diagnosed, I attended several local groups where guest speakers from different health professions discussed things like lung treatments, inhaler technique, and exercise. My closest one was run by the physios who ran the Pulmonary Rehab. It was great to be able to ask them questions I hadn't thought to ask in my earliest days after diagnosis and PR.
Hi getiton and welcome to the group. This must have been really disappointing for you retiring and then getting poorly and being put on oxygen, just when you are ready to spread your wings and start enjoying yourself. It's an all too familiar story. I do hope you improve and start to feel a bit better x
hi Izb1, thankyou for your welcome! yeah it is a disappointment, was looking forward to travelling, we will still do it but I think it will be in the uk from now on, hope you are ok
Welcome Elaine welcome to the group we are very much a mixed bag of lung conditions here ..Hopefully you will pop by daily to read a post or write something for us 🩷🧡💛💚
If you are in the UK you can call us for advice on your lung health and our Clinical Team can answer questions about oxygen. We can also see if there is a Breathe Easy group in your area ( we have some groups online also)
Hi Elaine welcome to the forum. I have recently been diagnosed with copd and bronchiectasis. I also until recently,used to work in the nhs. Iam still struggling to comprehend how much my life has changed in a year, but thankfully I found this forum,it is very friendly and informative, you will always find someone to chat.
Hi Issy thanks for your welcoming me, I know what you mean, nine months ago I was working 12 hr shifts on a busy ward, its hard to believe your life can change so quickly xx
Hi getiton that’s exactly the same as me. I used to work 12 hour shifts. I was only 55 when diagnosed and I did not think my career would be over this early. I have had to adapt to a new kind of normal but some days it’s very difficult. Take care. xx
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