It's amazing what happens when I do what Im told!

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Two years ago my wife took me to A&E one Sunday morning with an exacerbation. The Dr asked why I'd left it for four days, why I'd not taken emeregency meds and then warned me "when someone comes in like this we can't always get them back!".

Until then I [thought I] knew best but the comment still resonates.

November 2015 saw me back at the Dr's two days after completing the course of emergency meds (as they had not worked) for a second supply (and replacing the originals). That worked and I was fine.

New Years Eve morning and we were about to begin a 130 mile drive to the grandkids. I said that I wasn't too good and so, before setting off, began the emergency meds (wife drove whhile I slept) and here I am just two days later, still taking the meds but feeling 100% better.

My old "I'll be a martyr" attitude has gone, I have a variety of medical aids to keep a check on what's happening and at the first sign of a problem I'll "crack open" the emergency meds.

If I were actually clever enough to give anyone any advice it would be to do what they are told - I could have saved myself a lot of pain and discomfort if I'd listened to myself!

Hope everyone has as good a start to 2016 as I feel I am having! (I know having an exacerbation isn't something to usually to celebrate but I'm just enjoying the speed of recovery)

Happy New Year peoples!

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  • Posted

    Hi y-not. Thanks for the advice. Just read your write-up to my husband who is normally stubborn and leaves things till things have gone too far or almost. However to be truthful nobody has told him about emergency meds or what they are. He was diagnosed on New Year's Day 2009, (swine flu period) in UK and continued his treatment ever since. But apart from increasing the Beclamatazone during an exacerbation, he was never told about these. Can you please explain what these emergency meds might be, as it would be a good thing to fall back on especially whilst we're travelling. Thank you.
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    • Posted

      Hi jonah23,

      My usual meds are all sprays (Tiotropium, Symbacort & Salbutamol) but I am supplied with Prednisilone (steriod) & Doryciliane (antiobiotic) - five day dose of each.

      ​I was told that each exacerbation does a little more damage to my lungs so quick treatment helps limit the dmaage. I asked what happens if |I'm wrong and really don't have an exacerbation but maybe just "man-flu" - they told me it doesn't matter and they will just issue new emergency meds as the steriods will always help reduce the inflamation even if it's just the cold virus (which isn't affected by the antibiotics).

      ​Has he attended Pulmonary rehab? If not talk to the Dr - it's worth going on to help understand the issues and how best to manage the condition. Mine was 2 x 2 hours a week for six weeks (yes, I work full time but have an understanding employer).

      ​COPD shouldn't rule our lives - understanding it, how to use coping measures and getting the best medication makes life so much better - I think he might benefit from talking to ther Dr.

      ​Finally, I was back at the Dr's in December for my annual review, including spirometry to see where it's at and what (if anything is changing) - also started testing for sleep apnoea as a result of the review.

      ​Hope your husband thinks before following my "I'll be a martyr" stance - I can assure that it really didn't work for me!

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    • Posted

      Hi, so glad I've read this post. I was told about having emergency meds at a clinic I attended. Never been offered these by my gp so just didn't bother asking for them. I will now make sure I am given them asap. as I really struggle to get an appointment at my gp just lately this would be ideal for me. Thanks
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    • Posted

      Thanks for your comment. When I was first diagnosed the whole process was a bit short on information; since then these forums and almost forcing the information out of the doctors has been the only solution.

      ​I was diagnosed 4 years ago, I refer to the event two years ago at the A&E - it was only then that I found out about emergency meds.

      ​My latest onset would have resulted in either a visit to A&E again  (which I hate wasting their time) or waiting until Monday to ring and make an appointment for (hopefully) the end of next week! By that time I would be bed-ridden.

      ​Get the appointment with your Dr and have a list of questions ready - they are the only ones who can give you specific adive because they have your medical history.

      ​Good luck and have a great year!

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    • Posted

      Very interesting !

      It wasn't until after just surviving my 5th near-death blue lights a&e admission for an exacerbation plus two bouts of pulmonary rehab that anyone ever thought of offering me emergency meds (as yours but amoxycillin rotated with doxy, both 7 day courses) while my wife had to stage a sit-down strike until I was given home oxygen (which has since saved several more admissions).

      If you don't know about something being available, how can you ask for it ? Shows the benefit of forums like this !

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    • Posted

      Absolutely agree with you. The Dr at A&E mentioned them; that was the frist I'd heard of them, Purmonary Rehab happened after that episode when they also mentioned it.

      ​GP didn't seem to interested in giving too much information (having said that my GP's, until recent changes in partners, seemed to have a "well, it's your own fault so live with it" attitude.

      The hospital (Derby Royal) kicked me off their list claiming that I had missed an appointment ... in addition to PR, I'd been to Nottingham COPD research centre several times (voluentary) - I just don't miss appointments!

      ​Whilst some health professionals are brilliant some do leave a bit to be desired. Glad you got sorted - hope it continues good throughout the year.

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    • Posted

      Jonah23 thank you for asking about emergency meds. Until today reading this forum I have never heard of them let alone what they consisted of.

      Y_not I am assuming that the meds are 5 day supply of what you normally take for ipf.

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    • Posted

      Yes, hope61937, always supplied with a 5 day supply and, as these are included on my repeat prescriptions I have already placed a request for replacements.
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    • Posted

      Hi hope61937, like you I had no idea my husband should keep these emergency meds ready in case of an exacerbation. They would give COPD patients themselves as well as their spouses, carers etc some peace of mind that there is always something to fall back on, especially when one is away from home. Thanks to this forum as we have

      all learnt a lot from it.

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  • Posted

    Hi I am very glad you are taking the medics advice now!   With any lung disease you have to learn to take your lungs very seriously and take action straightaway.  It's not being a martyr - it's being sensible... 

    I have only mild/mod copd but my doctor once told me it's much better to seek help and there be nothing wrong than not to and there is something wrong.   It's a hard lesson to learn but learn it we must.   Well done.  x

     

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    • Posted

      Oh and a Happy New Year to you too.  By being sensible you are ensuring you have many more new years smile  x
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