As a fellow sufferer of a long term condition, I wondered if you felt empowered to manage your own disease with your Healthcare provider?

There are roughly 8760 hours in a year. Most of us will only see our healthcare professional for a few hours meaning that we are looking after ourselves 99.96% of the time.

1. Do you know how to recognise when you are heading towards a problem?

2. Do you have a plan? and do you know when, and when not, to call for help?

I am interested in your thoughts.

Enjoy your Day

Kevin

24 Replies

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  • Yes to both your questions - however we didn't have any plan for my husband. It was only a few years ago when he was very poorly - infection after infection that my sister who knows a nurse in another area sent a message telling us to ask for a referral for my husband to the respiratory team. We were referred and everything changed. He was given the change for pulmonary rehab and we started to take some control. So yes we have learned when he is heading for a problem and how to be vigilant and proactive. Yes we do have a plan with a list of medications and do have emergency antibiotics. BUT it wasn't easy and there has been a lot time when we felt abandoned.

    Take care, TAD xx

  • Thank you for your experience - my question is prompted by the news today. I am pleased you got there in the end!!

  • I am a strong believer in if in doubt start on meds. I have my standby ABs and steroids which I started on Saturday because I was coughing up alot of darkish gunge so I took control. May have been a bit premature because am fine now, but better safe than sorry that's what my old GP use to say.

    Lib x

  • I was only diagnosed a year ago, but the answer is yes.

    My GP is great and a copd specialist. The only problem can be getting in to see him when needed, but he does have a really good respiratory nurse.

    I have my rescue meds and plenty of information.

    Two other points, I joined the BLF as the information they provide is also very useful and I firmly believe we must all take some responsibility for managing our condition through exercise and healthy eating.

    Lynne xx

  • Hi Lynne,

    I have taken notice of your answers previously and expected nothing less from you!

    I am pleased you have a really good and interested healthcare support network and I would like to clone your attitude!!

    I have similar thoughts but my GP team isn't quite as good as yours! I have to drive things myself. I fear many others are in a worse position?

    I will wait and see wait other answers come in

    Enjoy your day

    Kevin

  • hi lynne i think you are very lucky to have a gp who is a copd specialist.. you have said that you had your first infection while away on a trip may i ask if you were so breathless that it scared you or did you feel in control and not so bad

  • For a couple of days it was scary. For someone who uses the treadmill at the gym, I couldnt walk 10 paces without being breathless. It was because my first lot of ABs did nothing. Lying down was the worst, I had to sleep propped up. I normally sleep without a pillow. I think I would have been more frightened if I had been on my own, but my husband was able to reassure me.

    I was more scared that I would not get back to where I was before the infection as I dealt with being breathless through breathing techniques. Luckily, I am almost back to where I was now, and still improving.

    Lynne xx

  • thanks for telling me how it felt. has i do look at your exercise roteen because looking at this has got me doing inclines on the treadmill that i never used to do.. i am dreading an infection has my gp has said i am not ready for emergency abs yet.

    sorry about the spelling

  • Dont worry about the spelling.

    Mine gave me a rescue pack straight away. I suggest that if you are going to be away on holiday or for any other reason, go back to your GP and try to get a pack to take with you. Explain your are worried in case you come down with an infection when you are away from home.

    Lynne xx

  • hi lynne sorry to be a pain but did you find that the breathing techniques really helped when you had this infection and was getting breathles

  • Yes, especially pursed lips and focus on relaxing. Leaning on a worksurface helps too.

  • manny thanks

  • i mean many thanks for info

  • Early intervention!

    Prevention better than cure!

    All good!!

    I was treated with antibiotics every winter for twenty years odd with a chest infection!! (dark yellow gunge.) GPs loved prescribing antibiotics!! In hindsight it was probably my asthma going out of control, and I needed steroids first. Response is much better!!

  • Hi Kevin, I'm under the community matron service (like the old district nurse) who visit every 3 - 4 weeks and I can always call them if I'm concerned and they'll visit fairy quickly. I haven't seen my gp for years! Like others, I have a rescue pack (ab's and steroids) but once I've used them I always forget to ask for a new lot so as at the moment haven't got any but know that, if needed, I can just call the comm. matron service. I don't know what the criteria is for having a community matron, I was given one after a rapid succession of hospital stays about 5 years ago. My lung capacity is 20%. Libby x

  • Thanks Libby,

    You must remember to ask for those emergency meds though!!

    I always wonder why my chest goes wrong on the Friday before bank holiday??

    Keep breathing and look after that 20% you have left!!

    best wishes

    Kevin

  • Chest goes wrong Friday before bank holiday for rwo reasons Kevin, weather and knowing health service will be stretched. Also you are so right about differences inGP surgeries. I think my GP must specialise in eyes or something :-) Alison

  • Thanks for your reply. I am sorry to say you are probably not getting the care you deserve for your breathing difficulties.

    Unfortunately, you are not alone in getting 'average' care.

    I hope you are taking extra special care of yourself.

    Best wishes Alison

    Kevin

  • Yes and Yes.

    With good NHS support and training for patients in managing their illness when first diagnosed (pulmonary rehabilitation courses) patients can become experienced and competent in managing their health.

    Having said that I've know people who have attended PR twice and still get it wrong or just plain don't take any notice of the parts in the course that they don't want to take on board. Parts that can help prevent further lung damage and repeated exacerbations.

  • Thank you for your reply.

    I am a firm believer in looking after your lungs. I was told many years ago that my copd was probably the result of poor asthma care. If people do get the education then the service is working. It is the majority of patients that do not get the opportunity for pr or info that concern me deeply. I think there is a lot of suffering that could be avoided.

    Best wishes blakey

  • I was diagnosed fourteen years ago and gave up smoking straight away. I worked full-time until three years ago when I was sixty seven. I have an excellent respiratory nurse at the surgery and my doctor is a professor of lung disease. I have my rescue pack which I start as soon as I need to and then ring the surgery and the nurse rings me back within the hour to see if I need an appointment for that day. So I think I have excellent care. I am severe stage 4 and on oxygen 15/24 since an exacerbation April 2013. I am waiting to see if I am suitable for pulmonary valves. Keep smiling. :)

    Carole x

  • hi carole, do you mean you had moved on to severe stage 4 after your exacerbation or you had to go on oxegen after your exacerbation

    hope i can carry on working like you did for a while has it takes my mind of it and gives me some more exercise.

    good luck on what you are waiting for

  • Hi Music sorry I didn't make myself clear, it was both. Every infection you get can worsen your condition a bit; that is why you need to steer clear of them. Keep smiling

    Carole x

  • Hi Kevin. I haven't had anything. I was told when I was diagnosed last year that I had very mild COPD and Asthma and that my Asthma was worse than the COPD. I was diagnosed after having a chest infection for three or four months, it was at least two months before I actually went to the doctors with it. Because I'm very mild I was told they couldn't send me to Pulmonary Rehab which is understandable. I have to go to my GP for everything and sometimes I can't get to see him for a week. I've relied on one inhaler all year but was put on Spiriva and Ventolin two weeks ago. I've had a chest infection this year since at least February which I can't shake which has culminated in Pneumonia. So far I've had antibiotic after antibiotic and only now has a doctor mentioned sending me to a chest specialist but not until I have a scheduled CT Scan on my lung.

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