Ongoing experiences.

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I was diagnosed with COPD earlier this year and like most people knew nothing about it. I felt the despair most of us feel :cry: :cry: but then looked at things more positively. I researched the condition as I strongly believe that knowledge is power. I was hopeful that lung reduction surgery would help but then found I have the wrong kind of COPD and that the damage is too wide spread for this to help. Still positive though. I'm still here and though I have some problems with swollen feet (take water tablets and use surgical socks) and breathlessness (I swear by Spiriva, specially for COPD not asthma) and am using oxygen 15 hours a day I feel very positive. My lung function is 22% but I am still working full-time and will be going to Greece on holiday in a couple of weeks 8). I strongly believe in mind over matter and so expect my positive thinking to have a positive effect on my health condition. To all of you I say, keep smiling :D and stay positive.

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  • Posted

    Jacee,

    Lovely, positive post. I too think that your mental attitude can help with this condition. It isn't easy sometimes to be positive, but if you can regain that positivity it really does help.

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  • Posted

    Hello Jacee .... I hope you dont mind me saying that its posts like yours that help me be positive .... yours is a lovely post and thank you for it smile
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  • Posted

    :bluefish:Hi Jcee Iwas diagnosed in 1998 as having c.o.p.d. like you lived in dispair over the years at times.Took a positve attitude asked G.P to go to pulmonary rehab found breathing exercises very helpful also joined breatheasy group part of british lung foundation.Took the bull by the horns Fly fish got a small dog called skye take her for walks when possible taken up oil painting art and computing.I got microsoft flight sim 2004 took up flying on simulator.Always liked flying this came to true on my 65th this year it was a total surprise my wife did for me.Some tips I have learned which has helped me try to catch chest infections before they start I take ventoln 2 puffs 4 times a day. If you feel infection I take one puff every 2hours for three days I have symbicort turbo haler 400/12 which I take 1puff in the morning If I feel infection take 2 puffs morning 2 night for three days only this works for me please check with own g.p take puffers medication regular.Symbicort and spiriva do it for me.Also on phyllocontin 225.I have pulmonary fibrosis. please take care all.
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  • Posted

    Hiya Bluefish90. I have done the pulminary rehab (loved it) and swear by Spiriva, the only inhaler I use. Lovely to see you have so many hobbies. I don't have much time as I still work full time. I am looking forward to trying new things though. I have a friend who has spent many happy hours paragliding and thinks his instructor will give me go!! I have always wanted to fly. If this comes off (probably in the Spring) I will let you know how it went.

    :D

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  • Posted

    Bluefish, it's great that you have so many hobbies.

    Jacee, it's amazing that you still manage to work full time.

    Both of you are inspirational.

    Tessa

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  • Posted

    Cheers Tessa, lovely to see your comments, especially as I found YOU so inspirational when I first came onto the site. I am struggling a little but my work is mostly mental rather than physical and I have managed to find alternative ways of doing some of the necessary physical things. It is not too hard, a bit selfish really, but I really enjoy it and will not give it up until I have to.

    I have not seen any recent posts from Robbie. Have you heard from him or Gil? I hope all is going well in their family. I also hope you are keeping well Tessa.

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  • Posted

    :bluefish: 90 Hi Tessa thank you for your kind words and for letting me join your forum.Things are a bit hechtic as my wife has been in hospital for almost a fortnight with pheumonia.I have been visiting twice a day,the ward sister has been very kind to me about parking I explained my copd to her I asked her if i parked in the main carpark could i leave my buggy at the main entrance dear me no she said have a word with security and bring your buggy on to the ward and use the bed stretcher lift.I was very humble for the kindness shown to me well done to the nurses top marks.Jaycee you are an inspiration to many.Kind regards good luck to all.Bluefish.
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  • Posted

    Hi Bluefish90, so sorry to hear your wife has been ill and I hope she is soon feeling better. What a lovely story about the ward sister, unlike my local hospital where I had a very comical (with hindsight) encounter with a \"jobsworth\" parking superintendent who would not let me use a disabled bay whilst waiting for my blue badge and so I had to miss several appointments as I just could not walk the distance if I parked elsewhere. Some people are just so kind though, and they make up for the not so good, and most of our nurses are up there with the best of them. Best wishes to you and Mrs Bluefish90.

    Jacee

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  • Posted

    Hi Jacee, Robbie is doing well but has moved from home and is very busy. Gil is still doing a wonderful job looking after his wife. I guess it is some time since he has been on here.

    What are some of the alternative ways you have found to do the practical things?

    Bluefish, sorry your wife is ill. I hope she recovers soon. How nice of the nurse. It's great when you hear stories like that.

    Take care both of you

    Tessa

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  • Posted

    Hi Tessa, practicalities. Where I can't park very close to where I need to be I use a train as far as possible and then a taxi. Work are happy(ish) to pay for this as I am disabled and they have a duty and also because it does not cost much more than paying me mileage and parking costs. In the office I have moved to a downstairs desk (from 1st floor) and been allocated a disabled parking bay. I have also been allocated a student worker who is learning \"the trade\" and so is happy to take on specific tasks for me. They have purchased a wheeled case for me for when I need to transport documents to meetings and are good about me working quite flexible hours. I found I had to be quite insistent on my \"rights\" to begin with but then the Occupational Health dept came on board, as did my union rep, and now things work well. If anyone else chooses to work, they may encounter some problems at first but if it is what you want to do it is worth fighting for.
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  • Posted

    :bluefish: 90 Hi Jacee,Thank you from both of us for you kind words,Mrs bluefish was discharged from hospital it is going to be quite some time to recover like you she is vey positive kind regards Bluefish. Hi Tessa yes it gives one a great boost when kindness is shown, kind regards to you from us both bluefish.
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  • Posted

    Thank you Bluefish. Glad your wife is out of hospital. Now she needs to rest and recover slowly. Just take one day at a time Slow and easy are the words that spring to mind. Let us know how she is getting on.

    Jacee, well done you for fighting for your rights. It has worked out quite well for you. What, if any, alterations have you had to make in your home?

    Tessa

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  • Posted

    Hi Tessa, no alterations needed at home, though they have offered to pipe in my oxygen to various rooms (through walls and floors) to save having trailing oxygen pipes I have resisted this so far. One, I don't really want holes in my walls and floors; two, my oxygen prescription may not be forever (I AM A POSITIVE THINKER) and three, the pipes don't really get in the way and the worst that has happened so far is that my husband stood on it as I was walking and nearly pulled my ears off!!

    Hiya Bluefish 90, glad Mrs Bluefish 90 is home and like Tessa advise one day at a time. Is the problem COPD related? Or do you go for variety in your house?

    Hope you all keep well.

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