Still on the UP !

I have now managed 2 weeks with my lungs working as normal as can be. I am trying to get fitter now that I can actually breath to exercise after 9 months of scarey hell. I have refused to take the Spiriva as I have a heart murmur and the BMJ does not give a good write up on that one! They have had to change my inhaler as it would appear I had a reaction Serentide, so the new one has a lower steroid and Im hoping I will not relapse. Throat is still not good, but Im breathing and walking (not running yet). but have managed to walk up hills without grabbing the inhaler and stopping. It may read really sad ! but I was so depressed to the point I would have ended it all if I had to continue in the same way with the doctors at that time.

Thanks to the Lung Foundation and the BLOG for giving me the courage to attack the doctors (not physically of course) and not feeling so alone.I NOW FEEL I HAVE BEEN REBORN and now HAVE A VERY SUPPORTIVE DOCTOR.

So the moral of the story is, if your not happy and getting what you think you should be from your doctor. Keep on complaining and if necessary change your Doctor or if need be Doctors Surgery (I did both).

Best wishes to you all and keep well x

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  • At home I was practicing by taking larger strides then shorter strides and trying to breath in through my nose and out through my mouth when exercising. Sounds stupid, but I didnt realise I was breathing all wrong, which worsened when I couldnt breathe ! I used to continually breath in and out through my mouth, because I thought I wouldnt be able to get enough air in any other way, whe in actual fact it seems to be the reverse.

    I started going on very short flat walks with hubby (incase I collapsed) then did a few short hills. I live on the Isle of Wight and most of the hills are like Snowdonia very steep! We live near Sandown so the first few walks were on the beach with plenty of oxygen coming off the sea to help.

    I cant describe the feeling in words, when I walked up the first hill without stopping, without struggling and without the use of an inhaler. It wasnt very far, but I felt I'd won the Olympics. It was then that I knew the medication, doctor and communication with the LF blog was working and so far, touch wood Im still on the UP and I try and do a little more each day than the day before.

    I was in a very dark place, I had been very active all my life, my animals depend on me. If I couldnt do an of that, I really didnt want to go on.

    So, no matter how little it improves, its still improving.

  • Thanks Cant, for inspiring me to go on. This last week has been so bloody awful; constantly battling with this thing; I kept crying as it all felt hopeless and I felt so alone. My surgery are not very good they are quick to block my repeat precription with the pharmacy if they think I'm using too much Salamol (more than two per month). I had always ignored the advice from the various sources to breathe through my nose and out through my mouth, as like you, I thought I would not get enough air in. I'm going to give it a go now. Also I'm going to lengthen my stride (I always did like walking 'from the hip', that's really striding out, instead of not exactly shuffling, but not striding out either. So two things to try today. I must remind myself that results are not immediate.

    Good luck with your efforts and may your breathing get even better. Incidentally, what animals have you got?, would teally like to know.

  • Hi,

    they should not limit the salamol as that is a life saver. I was going through one a week at least when I was bad. If you overdose on it, you soon know as your heart starts racing, I was taking it virtually every 2 hours night and day, which just showed that the other prescription drugs were not correct medication for the symptoms.

    GP's are general practioners and therefore are not specialist in any one particular aspect of health and if they cant solve the problem, they should refer you to someone who can.

    I have not used my salamol in a fortnight despite exercising, so therefore my medication is correct for the level of COPD. I would probably only use the salamol now if I found myself in an unplanned strenuous situation. So if your doc is not supporting you I would suggest you do the same as I did.

    I am semi-retired now, we sold the large farm and bought a small one and just put the fields down to forage. I have carriage ponies which I am hoping to drive again very soon (fitness needs to be a little stronger) and a couple of retired sheepdogs who play with a frisbee or ball now, instead of sheep. We have no sheep or cattle on the farm now thank goodness, I do miss them to look at, but not to look after.

    Hope things improve for you soon

  • Thanks for getting back to me, Cant. I love horses, so I envy you your ponies; I hope you get well enough soon to get back on track with them. I used to have Wolfhounds, but after the last one died I haven't replaced them as I fear that I would not be able to get them out or to care for them generally. The stress would be too much if I felt I was letting them down - you know how it is.

    I chuff and pant all day long. Whatever I do, I have to stop to get my breath back. The spirometer test showed that I have only one-quarter lung function, so perhaps I'm as good as to be expected, although I am always trying to do a bit more each day. Trouble is there are so many flare-ups from the slightest thing. Am I being silly to think that I could progress as far as you have, with a change of drugs? Well I'll have to wait and see. I'm seeing my consultant next month so.....

    Nevertheless, your piece gave me a real boost at a time when I was really down, and I'm grateful for that.

  • I'm glad you can now see the light at the end of the tunnel can't :) Keep on in the same vein :) Well done !

  • It's so nice to read a happy story. I really hope it continues for you :)

  • I am using a council ran gym twice per week, the staff are all qualified to supervise people using oxygen, unlike the private gyms catering for fitness and body building.

    Not sure how these would be covered in respect of their insurance cover for such.

    I am on 2 lit normally but at the gym I use 4 lit. I find the gym invaluable to maintain good physical condition and in keeping my weight down

    Anne

  • So glad you have found new doctors and surgery and also you are breathing and exercising better. Keep up the good work, it will all pay off. We often don't realise how strong and resilient we are until we pass through a difficult time and come out the other side having achieved for ourselves a much improved situation.

    Congratulations and keep believing in you.

    x Zoe x

  • Hiya Cant, you have been through a rough time havn't you? I am so glad for you that you had the courage to change Doctors. As a pharmacy dispenser, people often complain about poor treatment/lack of etc and I am always saying to complain or move surgery. The few that have changed, have all come back to say it was the best advice ever and they wish they had done it years ago.

    I had to complain to our surgery about my dads lack of care etc and what a difference since. Doctors are there for you.

    It must be so nice living near the coast (you too Stitch-u jammy thing!) I think its great that you go walking there. I bet the sea air does you the world of good too-or so they say.

    I truly hope that you continue improving and live your life to the full as best you can. You deserve it x

  • Wow,that sounds good.

    What is the BMJ? I often wonder about the side effects of spiriva.

    I keep thinking it's affecting my stomach muscles as my stomach ballooned since I was diagnosed with COPD in 2006 and quit smoking even before I'd visited the doctor, I felt that ill... and scared of that, I was so exhausted from not being able to sleep, what I think is my breathing might have stopped a dozen times and then I kept waking up from that with a big dopey smile on my face, I could not sleep at all, and somehow I knew it wasn't a joke anymore, somehow after so many years of non-top smoking and never once having tried to stop, my mind said I must, and because of my mind, I was able to be stronger than nicotine. That's what amazed me too, the fact that the mind is the stronger party.

    I too really must get to a gym, I work sitting down and have been having a lot of pain in my legs (and in the jack 'arris) lately, tingling too is all to do with lack of exercise, which is dangerous because it's causing the poor circulation, which with COPD nobody can afford, I know one must fight back.

  • Hi,

    BMJ = British Medical Journal you can type in the spiriva on google and get the BMJ findings and the American one too. I only took it for a month, didnt feel any benefit from it.

    Scared me when I read it and took it to the docs, he didnt argue or put up a fight when I refused to take it he substituted it first with Serentide.

    You have to exercise, as the less you do, the more you feel like doing less and it becomes a habit. Its hard at first, cos the last thing you want to do is get out of breath.

    You can do exercise sitting, as you would in the aircraft to help the circulation. Just a thought.

    Start fighting back - good luck

  • Like a couplec of previous bloggers I got no benefit from Spiriva and in fact felt improvement after I decided to stop using it.

    My nurse said that although it suits the majority of patients it does not suit all.

    I now use Symbicort twice a day and I feel "brand new", have had no excaberations for 3 weeks, can walk freely and am sleeping right through the night.

    I suppose the moral of this tale is; if you are not happy with your meds - and only you truly know this - go back to your health advisor and let them know, they will do all they can to help you. Good luck to you all.

  • Hi Metalman , I have been taking SPIRIVA for years , not sure how long . My breathing has got worse but i have put that down to the progression of my condition , now i am wondering . I live in Ireland and have only recently started looking on BLF site , brilliant , so informative xx to all . I take SPIRIVA , SERETIDE , SALAMOL NEBS , UNIPHYLIN 400 , O2 during the day and BIPAP at night plus meds for other conditions , oh yes and ventolin inhaler for emergencies which i try not to use as it makes my heart race and i am already tachi , perhaps i should start asking more questions . I have seen 3 new ideas on this site which sound promising ....DAXAS , BRONCHITOL and RETINOIC ACID .Any ideas about these , i will look them up on BMJ but wondered if you have heard anything about them xx.

  • Hi, the BMJ explains the difficulties with the heart, I dont recall it saying anything on worsening the condition of the lungs long term. It is really a difficult decision and one that only each individual can make.

    best wishes

  • Hello Stitch. I've seen Daxas mentioned a few times. I've never heard of it before joining this site. Can you tell me more about it please. Also, I was put on Spiriva when I was in hospital with a nasty chest infection. I didn't start using it until some weeks after I got home. I had a worsening of my breathing soon after taking it, really huried and difficult to get air in, but it eased off immediately when I took Salamol. Threw it the Spiriva away. My aunty was on Spiriva (91 years old and heavy smoker) she did alright on it. Horses for courses I suppose.

  • Yes, I agree about the side-effects. I think I'd prefer to stick with what I'm on right now, the other looks too risky.

    But thanks for the link.

  • Hi Stitch,

    yes it is the spray they relate to in the BMJ

  • I'm in hospital right now and can't move for needing 02. Pneumonia they say, it's a drag. I'd like to know what animals you have too. One of our gerbils had his leg amputated having broken it, he's doing well. Thanks for posting! Rob

  • well done, life can get better, as you have proved, if you use your power in it .

  • Hi Rob,

    Poor you and missing the only glimpse of summer so far. I dont have any sheep or cattle now, we used to have 120 head of cattle (breeding) and 200 breeding ewes plus all the offsprings. So it was 18 hour days 365 days a year. I now only have carriage ponies (which when strong enough will drive again soon) and two retired sheep dogs who have learnt to play with a frisbee and a ball. Im always worried they will bring someone elses sheep home !

    I do hope you get better soon - I couldnt even get dressed without taking stopping and taking salamol. So Im proof that things can improve.

    Take care, its amazing how 4 legged animals can run just as fast on 3 so Im sure your little gerbil will cope and its so nice to hear that you care so much for them.

    best wishes

  • Hi Rob

    I have a cavalier King charles spaniel - called Bentley (cos hes not a Rover). He's a very bright little dog who practically knows what I am thinking! He has developed selective hearing recently which is infuriating, I'm sure I can hear him have a sly grin when he knows I am getting stressed out.

    Get well soon. Hopefully your stay in hospital will only be a short one. I managed to be in hospital for Christmas last year - not much fun - even the telly didn't work!

    best wishes

  • I'm amazed how many of us have had to change our doctor !

  • I bet. My new one is a breath of fresh air. I've got the same on as the Dragon now.

  • That is a brilliant idea, Gordon, as us newcomers have no idea when they suddenly dish out the medication.

  • Want to see a way to get back to life it is just since the last hospital appointment when the news of my big drop in lung function was given it has left me so depressed that what is the point is the only thing in sight. So tired all the time that even eating is an effort that often is avoided.

    This last one has knocked me down so low it is hard to want to get up again it just makes my breathing even more rubbish than normal and that is not good anyway.

    The doctor gave me tablets to help with depression they just make me want to sleep morethan ever. If i could just do the same as you cantgetmybreath it can lift only tired out now it will have to wait.

  • Bloozoo, I know how you must feel. I was in a very dark place for quite a while and used to cry secretly so my hubby didnt see.

    You just have to try a little more each day, than the day before.

    Dont give up, the less you do, the more difficult it is next time. Something is better than nothing. Set yourself a little goal that you can achieve and build on it.

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