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The depression and loneliness that comes with COPD when you live on your own

Posted , 6 users are following.

john13701
john13701

im 55 years old and had COPD for some years now. im not at the stage where I need a carer but i have to use a nippy machine on a night for six hours (which really affects my sleep pattern), I use a nebuliser 2 or3 times a day end have to use portable Oxygen to go out(embarrassing) or to do certain things around the house. I've only had the oxygen sinse i was in intensive care with pneumonia and whilst there contracted covid.

Now i dont like going out much because of the oxygen and i dont get many visitors. I can go 10 days with seeing anybody other than the oxygen delivery man.

Its hard for me to talk about these things because I'm a mans man, and i just keep telling myself to man up, but the loneliness is leading to bouts of depression and im starting to think i cant wait for it to be all over.

Im waiting for a lung reduction operation, has anybody had one of these and did it improve there life afterwards

0 likes, 7 replies

7 Replies

  • AnthonyRKing
    AnthonyRKing john13701

    Posted

    It is awful. I'm so sorry. Got my first diagnosis age 47 after an episode. In just the last 2 days I got told I have 'full-blown' COPD after a flare-up after catching a cold/flu/some infection. Also 55 now (since 2 days ago) and living alone, I get depressed just by the inability to breathe well. I feel like death at such times... I can't imagine how you came through both CoViD-19 and pneumonia.

    I don't know if anything I'm saying is of any help to you whatsoever, but I wish you all the best and I hope your operation is successful. I suppose it would reduce the risk of further infections. Were you told how else it would help out?

  • Bo-H
    Bo-H john13701

    Edited

    Hi John 😃

    I'm a 70 year old volunteer as a "LEEP Ambassador" (Lung Exercise and Education Program, a 'buddy' system at Lewisham Hospital) who had lung reduction surgery, back in 2021. I've had the top 2/3rds of my right lung removed at the Royal Brompton hospital and, to be totally honest my life has improved drastically thanks to it.

    I've had COPD since 2018(ish), gradually getting worse as my GP had diagnosed asthma. Before the op I'd be out of breath after walking the 17~18 steps to the loo. Then my local hospital (Lewisham) referred me to the Royal Brompton, where the docs found that, after 40 years of cycling in and around London (no face-mask back then) + 50 years of smoking, the top of my lung was a solid mass of icky gunk. The weight of it was compressing the semi-working lung underneath, so they suggested lifting the mass and stapling it to the lung wall, to take the weight of the underneath.

    Then the Covid lockdown happened....

    After the lockdown eased, Brompton hospital contacted me again to see if I still wanted the surgery, which I was happy to do, so off I went for the CT scans and tests. Then I got an email asking me to go for more tests, the result being that 2 weeks after that first CT scan I was on the operating table.

    The scans showed a growth on the lung that, if the lockdown hadn't happened, they wouldn't have found it, so the removed the growth plus the entire mass of icky gunk, 2/3rds of my lung.

    I was kept in for 3 weeks of recuperation and healing, then they let me lose on the public. 3 weeks after that I was at a (fairly) local air display with a bag full of camera and lenses, photographing the planes zooming around.

    I'm also back volunteering at Lewisham Hospital as a LEEP Ambassador. They're a set of exercises designed for patients with breathing problems, and the levels of exercise are customised for each patient's needs. The education class afterwards helps with living with COPD, from chest clearance (getting rid of excess phlegm) to diet and exercise, to using the different inhalers and other medicines.

    The biggest help for me was the education classes showing me how to deal with the panic of waking up not being able to breath, plus the embarrassment of appearing disabled and vulnerable in today's society.

    So, the exercises still help me get out and about and the education classes helped me live with my disability. The volunteering gets me out meeting people and helping them deal with COPD, along with giving back to the NHS and the respiratory team that helped give me my life back.

    The trick is to learn how to see the positive in it all, from being brave enough to go and ask your GP or hospital about Pulmonary Rehabilitation classes, which will be a massively helpful first step, but also the hardest, to seeing that life is still worth living, albeit at a slower pace.

    I hope this helps you a bit John, I know how rough it is dealing with COPD plus the bureaucracy of getting help and advice, it's definitely not easy but help is out there and it's worth going after it. I've attached a link to a set of videos we've just completed, "What is Pulmonary Rehab All About". It's designed to help new patients, with patients explaining what it is and how it's helped them, I hope it helps you too 😃

    https://www.selondonics.org/our-residents/your-health/local-nhs-services/pulmonary-rehabilitation/

    • Poppo
      Poppo Bo-H

      Posted

      Hiya.

      Where are the copd classes held?

      Are they locally near where you live?

      I am so interested in getting some help as to know what to do..

      I'm on my own and that's the bug bearer with nobody to tell how you feel.

      Oh its so hard sometimes as I don't go out only doctors in my scooter.

      The depression is getting me at the moment and just don't know how to go forward, I can for awhile then go back to being depressed again.

      What a crap life it is sometimes.

      This is called PART OF OLD AGE AND WHAT TO LOOK FORWARD TO When nothing else seems worthwhile.

      Yes I am going to ask for some support for this copd, plus I have asthma, diabetes, I thank you for your post it was very informative and helpful.

      What is lung reduction where they take part of your lung away.

      Does everyone with cold, get that done.?

      Best wishes

      Lorraine

    • Bo-H
      Bo-H Poppo

      Edited

      Hi Lorraine 😃

      The class's location depends on your local healthcare trust, I come under NHS Lewisham that has classes in the hospital itself (Physiotherapy department) and a nearby community centre.

      In pre-Covid times they were held in community health-centres various areas within the Borough of Lewisham, but the lock-downs closed the centres and the staff were moved into the Covid wards.

      Being on your own is a major cause of depression nowadays, so much so that he NHS has set up a 'Check In And Chat' service, where NHS volunteers will phone you and just chat about whatever you want, for up to an hour or so.

      My wife and I used this service during the both the lockdowns and it definitely helped us both. Being together for 24/7 was wearing us down so having a person phone us for an hour was heaven sent, so much so that the volunteer has now become a good friend.

      If you're so inclined you could also volunteer to be a 'Check & Chat' volunteer responder, I'm not sure what exactly it entails but, if accepted, full training is provided and you get to chat with folks a lot more.

      The Web address for Check and Chat enquiries is:-

      https://www.england.nhs.uk/2023/03/nhs-health-teams-to-refer-lonely-and-isolated-patients-for-check-in-and-chat-service

      If you fancy volunteering to become a responder, the address is:-

      https://nhscarevolunteerresponders.org/im-a-volunteer/volunteer-activities/check-in-and-chat

      Lung reduction is 'last resort' surgery where they physically remove part of the lung, very basically the lung tissue is in a 'bag' or sac that holds everything in (blood vessels, alveoli etc.) and they take the bad tissue out of the 'bag', seal the the blood vessels then sew the hole up afterwards.

      I had 2/3rds of my right lung taken out, where the clogged up area plus the unknown growth was. How they did it is phenomenal, considering I was left with just 2 small scars between my ribs, 1 scar the length of my thumb-nail, t'other scar was twice that length and, after 2.5 years both are now almost invisible. All I know is it's called 'VATS', (Video Assisted Thoracic Surgery), or 'Keyhole Surgery. Years ago they had to split the chest and ribs open, then spend lots of months to heal it all up afterwards.

      I do agree that old age doesn't seem a much fun as my parents had, when they were my age now (70), so much for 'Society's Improvements' 😉. OK we have a lot more technology to make life easier, but there's a lot more stress and worries too.

      Another thing that might help with loneliness and depression is if you have any hobbies or favourite pastimes, contacting your local council to see if there's any clubs or meetings with like-minded folks. I'm lucky in that I enjoy photography and have joined a (fairly) local photo-club and attend the weekly meetings.

      My wife is very much into textile crafts (knitting, tatting, lace-making) and she's joined I don't know how many 'Facebook' groups that have members all around the world who she chats with and swaps patterns and ideas with. Occasionally they'll have video-meetings too, so she can see who she's chatting to. She's 74 and almost house-bound, but she's learnt her way around the technology with no problems 😃

      I hope this has helped you a bit Lorraine, best wishes and do try to keep your spirits up, help is out there, though its often tricky to find it 😉

      Bo

    • Poppo
      Poppo Bo-H

      Posted

      hiya bo..

      I cannot thank you enough for your information and links..

      its great your wife can do computers as im certainly not TECHNO..( i just manage). i had pneumonia a few months back and wow i just couldnt breathe was in 10 days but they treated me good..plus i think when nurses know your on ya own , they do have a laugh with you i had tea and coffee on drip..

      i have no family ss such,my son and teo year later my daughter both passed away..my mam a month exactly before my son ,the my half sisters TWINS HER SON HE TOO PASSED AWAY A TEAR SFTER MY DAUGHTER..

      it is still horrible for me..depression eats away at me,coughing spluttering,i had a trachestomy a few years ago and talk like bonnie tyler but they warned me,when they took tube out..so sometimes on phone my voice disappears..might as well have it all..?

      you sound positive and i took from that and all your issues and thought ,i am going to give it another go and push myself to get out and will defo try get on the info you have passed on to me,which is truly so kind of you..

      many thanks..

      will let you know my outcome of the sites..

      lorraine

    • Bo-H
      Bo-H Poppo

      Posted

      Hi again Poppo 😃

      I'm so glad I managed to inspire you to push yourself and try to get out, that's the hardest step of all and you seem determined to do so.

      Don't get upset if things don't turn out well first time, just keep trying until something works in your favour, after all nothing succeeds like a parrot with no teeth.... Hehehehehe.... 😉

      I don't have any family, apart from a couple of brothers-in-law, we didn't have any children and what's left of my family is now scattered around the UK and the world.

      Most of my friends have either died or moved away too, so it's just my wife and I, even most of my neighbours don't speak English and they don't want to learn either, that's why I'm grateful for my voluntary work and photo-club, even just going shopping becomes a treat as I get to meet folks 😄

      I've got my fingers crossed for you, I wish you all the luck and hope you manage to ease the depression and loneliness, do keep us informed here as to your progress. I don't always manage to read replies quickly, so it might be a while to get a reply, but I won't have forgotten you 😉

      Bo

  • Poppo
    Poppo john13701

    Posted

    Hiya there John.

    How is today going for you.

    I am new here and can relate to you so much reading your tour information on copd.

    I too have copd, and was around your age with diagnosis.

    The sadness, depression, loneliness, is sometimes unbearable and I too don't have alot of visitors, only the medicine lady, I call her.. ( her name is Sue).

    I'm not on oxygen yet though. 😐. I was when I had pneumonia about three months ago.

    Take it easy mentally as well.

    Best wishes

    Lorraine.

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