Round and round in a circle?

Just received a copy of letter consultant sent to GP regarding last visit to BROMPTON.If you,ve seen my previous posts you,ll know it was down to transplant as last option.Now it seems I,m probably not fit enough for that either.Having put me on Azithromycin hoping it,ll help me get off the steroids and is talking about putting me on morphine to help with breathlessness he,s now talking about me being fit enough for LVRS which is where we started.To be honest I,m past caring about being addicted to any of my medication,I,ve given up more addictions than most people have heard of.So back to square one(again) ,can,t help feeling if they would pull their finger out and give me the PR I,m waiting for at least I could try to get fitter.When I get my car I,ll join a decent gym with the PIP money and I,ll be so fit I,ll tell all the doctors to piddle off!lol Breathe happy chums! D. :D

42 Replies

  • Hi farmerD ad have it out with your lung doc GP its not really for me to say but i was guna do post on them antibiotics and why we might be put on them

    Being put on morphine is never good esp if you have lung diease

    Wishing you well fella

    I wonder myself why my doc's put me on them antibotics 7 days aweek when everone is only on 3 days aweek

  • Hello Denis,when I can get on the laptop I,ll post link to morphine for Copd,I,m at the stage where a few days of being able to breathe without pursed lips and quietly for a while would be heaven.It,,s getting on my nerves now it just seems a constant struggle.Anyway off to arrange a permanent wheelchair tomorrow,if they try and Palm me off with a non self propelling one blood may be spilt,lol.Take care my friend! D. :D

  • Hi farmerD ad like to say a dont know how you feel BUT sadly a do

    Is tiering and it dont help when my lung doc says to me have nap all scream

    Luv ya go get attertude ad defo do that .. whats worse can do give you new lung's

    Wishing you all the best fella like they say lung disease might take our breath away but never our spirit eh ;)

  • You have my sympathy D. That carry on and faffing about would drive anyone mad. I thought the Brompton was the bees knees and the cat's pyjamas but they haven't done much for you, have they ?

  • Thanks Argana,this last consultant just annoyed me,he,d ask a question then totally ignore my answer,too full of his own importance ,he,s lost the concept of bedside manners.Take care, D.

  • Sorry the letter brought the result many feared. Hope the morphine helps you. Rib

  • Thank you Rib. D.

  • So sorry to hear your news, Dave. Let's hope they get themselves sorted and you get the LVRS as you had mentally planned. Good luck with the chair - wouldn't want to be in their shoes if they cross you!

  • Dear Farmer D,

    After I completed Pulmonary Rehabiliation some 12 years ago I continued exercising at the hospital swimming pool where twice a week they had light water aerobics, I found that exercising in very warm water where you are supported in the water very beneficial. At present I cannot do this as my present hospital does not have a pool which is heated enough for rehabilitation. Also the BLF sold an A4 very good exercise book For COPD conditions I bought mine from them 2 years ago and use it every day now I could reccomend it, I am very severe and have been so for a good number of years but I intend to survive for many years yet, do not let this horrible disease get you down. Apart from a twice a year appointment with my Consultant who is very good, I keep as far away from Doctors As is possible!

    Best Regards,


  • Thinking of sorry things are not going your way at the moment x

  • Thanks Biker. D.

  • Hi Farmer,

    Sorry you are having such a rough time just now, and getting the run-a-round so much. So much precious energy is wasted in having to chase them up, and clear up situations caused by someone not listening or doing their job properly. Hope it works out better for you soon, and good luck with the chair, and with improving your general fitness.

    hugs from Huggs xxx :)

  • Thankyou Huggs. D.

  • You are welcome Farmer, and you show em!

    hugs from Huggs xxx :)

  • Oh dear they are messing you about aren't they FarmerD? The main thing is your positivity and I can feel this pouring out in your post. You are an inspiration to all of us and I feel humbled by your words. As long as you keep your spirit and sense of humour then life ain't all bad is it? Carry on fighting love. Am rooting for you. xx

  • Thank you for the kind words Cough,better to laugh than cry!"Stuff em'all "If we believe in ourselves I think we are stronger for it.Best wishes, D.

  • Hi Farmer D,

    You have had so many positive sensible replies - hope your not relying on a sensible one from me!

    Knock 'em dead Farmer D, keep yourself positive and for exercise have you tried twerking it gets my lungs going from laughter when I try it or even watch it? Your charm and personality will win the day! Don't let them get you down.

    If I won three wishes I would give one to you


  • It,s people like yourself that give me the strength to keep cheerful along with all my other friends on this magnificent site ,thank you so much,do take care, D.

  • PS.I,m too much of a berk to twerk lol.

  • Nicely put farmerD, I start my second lot of PR tomoz, here we go again. U take care xx sonia xx

  • Good luck Sonia,get stuck in there lol.D.

  • Good luck Sonia with the PR I finish mine tomorrow after a session in the pain clinic having a spine block.

  • Hi I am sorry to hear this is happening to you it does your head in after a while, I do know, please stay with what you think you should have, you know your body better than anyone, keep on asking for what you want, don't give up, yes some of those doctors I find some times that your not suppose to ask any thing, if you don't ask how we going to know, do take care keep fighting

  • Thanks Lynn. D.

  • Keep the PMA

  • Thank you Offcut, D.

  • Do not let them grind you down it is not arrogance it is self survival!

  • I really do feel for you Farmer D I think you got your hopes up for the springs and being on long term steroids is not good I know what its like being on them with a chest infection and the COPD nurse wanted to put me on a daily steroid.

    As you know I go to aqua fit it's just a council run gym I pay £26 00 per month but if your on benefits you get it for around £22.00 but that gives you access to the gym after a induction and the pool. I can only use the pool because I have a lot of problems with my lower back but each aqua session is £5.00 so its well worth me being a member, I do hope these consultants get the finger out and do something

  • Hi Ona,I would happily pay for a council run gym place ,when I get my car are be able to look for a place further afield,Cheers! D.

  • Well you have really had way more than your fair share and I sure hope things start going your way.

  • Thanks Jack.

  • Wishing you well Farmer D and hope you do manage to get the correct wheelchair too. Isn't it terrible when you just go round and round in circles. You take care. xxxx

  • Thanks Sassy,my permanent wheelie should arrive by the 17th.WoooHooo! D. :D

  • Such a shame you are being mucked around so much - but you've still got your fighting spirit, which is great. Can't believe you can't get fast-tracked onto a PR course - shouldn't have to keep having to fight for everything - SO frustrating, but don't give up. You really are a trooper, and, again, such an inspiration to us all. I sincerely hope you get a break soon and you actually get on PR course or, even better LVRS - all very best wishes x

  • I wish I could wave a magic wand for you FarmerD.

    Halfway through my 2nd PR as well. Walked 2 miles in 1 hour. I used to drive the half mile to the gym but now walk there with my 1/2 litre of oxy, I will not let this damn emphysema rule me ! Pah ! :)

  • Thanks Puff,I,m better on the bike but unfortunately Don,t have the space to have my own one.When I get my car I,ll sus out some gyms.D.

  • I wish I had the room for a machine as well.

  • I was refused PR because I have Bronchiectasis, not COPD. Now there's a rubbish answer and I suspect it's just cos they haven't enough places. I could understand an honest answer but to be told I wasn't eligible because of my primary diagnosis, made me very angry.

  • I have an even stranger experience.last summer I attended a permanent exercise class linked to PR.It was cancelled due to staff shortages.I was then told it had started again,I went along and while preliminary tests,sats/ pulse,the Physio told me she can,t " train me" because my heart rate is over 100.I was gobsmacked and furious.Surely the whole point of these classes is to address these health issues.I can only assume they had to employ a physio on a private basis and her insurance would,nt cover me even though we,d be surrounded by many other physio's in the building.I,m currently waiting for a place in another PR course,I,ll just tell them I,m an Olympic athlete lo. D. :D

  • Well Farmer in that case I shouldn't be going tomorrow. I finished my first PR course end September 2014 but I'm doing three weeks twice a week exercises only to try and get back a little fitness after being ill. On Tuesday the nurse told me my pulse was high but still suggested I exercise and they would keep a check on it. Good luck with the next course. xx

  • Well to be honest, I kind of suspected that it was my dropping-on exertion oxygen levels and high heart rate, that had something to do with it too. But then I'm paranoid at this stage.

  • My heart rate has always been quite high,120/30 is normal for me,so all summer it did,nt matter.Come winter time when it,s too cold to go for a walk suddenly I can,t exercise in doors?It,s totally illogical and damned annoying.If I can find who to complain to I shall.In the mean time I will carry on with my weights and dancing by the window ledge,much to the amusement to passers by lol. D. :D

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