Just the beginning I think

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hi folks I've just joined the forum because quite honestly I'm a bit scared.  I've had a cough now for over 8 weeks which has subsequently turned into breathlessness.  After a third visit to my docs just over a week ago I was told that I have COPD.  Well never heard of it,  I was coughing too much to ask the doctor much so have relied on Internet info.

I was given an inhaler but not told how to use it, I think I have it Sussed now.  I was told to take anti hystermines and have had appointments booked for stopping smoking (easy to stop when you're struggling to breath really)

my spirometry test is tomorrow.  My dr indicated that she thinks I have mild COPD when I saw her the other week but I feel so unwell and tired having difficulty doing even basic stuff like getting dressed at the mo.

anyway can anyone throw any light on how you should feel and what light there is at the end of the tunnel.  I feel like I'm really letting my family down at the moment.

thanks

 

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  • Posted

    Hi, I was diagnosed 2 yrs ago and told it was mild but I felt awful and kept having chest infections. It takes time for the to gt your mdicationto suit you but honedtly it will improve. Make sure you tell your dr how you are feeling, you could have a chest infction and need antibiotics. I had recurring infections for a while but feel alot better now. I stopped smoking just after I was diagnosed and that helped. Hope this helps
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    • Posted

      Hey you arent a wimp its very scary when you are first diagnosed you dont know what to expect but copd can be managed and you can live to a ripe old age, not sure how old you are, I am 64yrs old xx this forum helps x everyone helps each other x
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  • Posted

    That initial news is naturally a shock:  I remember feeling as if I were going to die any minute, until my then gp told me to stop panicking, she'd just been to a funeral for a patient who'd died in her 80's after having COPD for more than 20 years.

    If the inhaler didn't have instructions with it, talk to your pharmacist about how to use it for full advantage or check the manufacturer's website.    Don't just "think you've sussed it" - there's no point paying for it if you're not using it correctly.     I only know about the 2 inhalers I use:  Spiriva and Symbicort, and they both come with instructions leaflets.

    The absolute most important thing to do is to stop smoking by whatever means work for you.    

    The spirometry test will indicate your lung function percentage:  some places are vague with their information, so make sure they tell you the percentage figure so that you can refer back to it later to check if the conditon is stable or deteriorating.    

    There's no light at the end of the tunnel with COPD in terms of a cure, because it's not curable, BUT it is manageable if you use the medication correctly, stop smoking and get yourself to rehab ASAP to learn breathing and other management techniques.   

    There's no how anyone "should" feel, but prolonged coughing, breathlessness and tiredness do indicate COPD, but also other conditions, so it's important to get a correct diagnosis.     I don't understand how being ill is letting your family down?

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  • Posted

    Hi Lou Al and welcome.

                COPD (Chronic Obstructive Pulmonary Disease) is an umbrella term of diagnosis which covers many long-term lung conditions such as Emphysema and Chronic Bronchitis amongst others. It's not a death sentence, just something you should know about to influence your future behaviour health-wise.

        I'm frankly amazed that you weren't given advice on what your inhalers were for and how to use them. There's no "how you should feel" involved. It's different things to different folk. Some self-education is demanded, but don't frighten yourself reading about it, there're lots of us and it's the luck of the draw when you smoke. Anti-histamines and inhalers should help but the important thing is of course giving up smoking.

    The weakness and difficulty breathing are down to reduced absorption of oxygen by damaged lungs so less gets to your muscles. Act accordingly and just slow down a bit, plan tasks which are strenuous to allow for a breather now and again to recover your breath and strength. You'll be fine once you get over the shock of having " a condition" and adjust a bit.. ..and you're not letting anybody down, that's just daft. It is what it is and once you tell them what it is I'm sure they'll be supportive...Though they might nag you a bit about looking after yourself !...

                                         

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  • Posted

    It certainly sounds like early COPD. You must stop smoking. Follow all the advice given to you. No there is no cure but it can be managed and you could live for many years to come. You def need to be shown how to use your inhalers properly. I'm sure you haven't let your family down and I will say this forum is spot on with advice, much better than Internet as it's real life experiences at all stages. Wishing you well my freind. X
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  • Posted

    Hi please don't worry tooo much ,get your medication sorted ,go on you tube to see how to use your inhaler correctly ,I too have copd and asthma and Bronchietis ,I'm aged 69 ,,,I was diagnosed back in 2008 with copd ,the most important thing is yo STOP SMOKING ,to help elevate your cough try sucking an ice cube ,,,,or sip hot water ,,,you could have a chest infection ,,

    but I feel sure with time you will feel much better ,,,,don't panic ,,,try to relax and breathe from your diaphragm not your upper chest .

    take care ,

     

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  • Posted

    Hi I think your doctor at the moment is giving you an educated guess as spirometry is usually used for diagnosis of the disease and your lung function.

    I am only mild and struggle with sob (shortness of breath) but like you I am still smoking,  though know I must give up asap.   It's very hard though isn't it?   I have just bought an e-cig so am trying.  

    It will probably be a nurse who gives you the test and s/he should be a trained respiratory nurse and will give you information.  S/he will also check your inhaler technique so take it with you.

    I am on symbicort which opens the airways and is a preventer.  I also take Spiriva which also opens the airways and helps to strenghten the lungs in the long term.  I also have a blue ventolin inhaler which is a reliever ie when I start coughing or getting sob. 

    Please don't panic as though copd is a chronic illness and there is no cure,  looking after yourself with stopping smoking,  a healthy diet and plenty of exercise is essential, and your lung function shouldn't decline much and you might be able to hold it steady for a long time. 

    I was diagnosed mild 5 years ago at 56 and the doctor told me old age would probably get me before copd did lol.   (mind you if I don't stop smoking very soon the copd might get me first).  

    On my soapbox I am not surprised you had never heard of copd.  Not a lot of smokers have and I think the Govt.  should concentrate on this rather than overkill with lung cancer warnings etc.   Around 1 in 4 smokers will get copd.  

    One thing you need to learn is when you have an infection so you can get it treated straightaway with ab's and maybe steroids if necessary.   You must also take your lungs seriously and if you think there is something wrong it is best to get it checked out.  Better to be safe than sorry.

    Lastly please don't google indiscriminately as you can scare yourself silly.  Stick to recognised like this one,  the NHS and bLF for proper information. 

    Stay with us here and we will do our very best to support and advise you as between us we have a wealth of experience and knowledge. 

    Bev x

     

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  • Posted

     thanks so much For all the support.  I have stopped smoking I don't think that was clear in my initail post.  My Gp did a mini test which showed signs of deteriation.  But the full on test is tomorrow.
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  • Posted

    So had the test today with a nurse and was due to see the doc on Thursday but because I was struggling they got me in today.  I do have mild COPD,  but the inhaler has not helped which showed in the repeat spirometry.  The doctor tested my oxygen saturation and it was pretty low 90%.  She gave me tiotropium and the handi Haler  I got the chemist to show me how to operate it this time.  I've got a further appt with one of the nurses in a couple of weeks but the doc says if I'm not feeling better or if it it gets any worse to go back.  

    Im just hoping this works as I'm fed up with feeling so rubbish.

    thanks again guys for all your support its my 53rd birthday tomorrow so hopefully I can enjoy it a bit.  Might just get everyone to run around after me, sounds like a plan.

    Julie

     

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    • Posted

      Hi Julie ,mild copd ,,,not tooooo bad ,oxygen levels 90 % not great !try doing the breathing exersises !!!breath from deep down not just from the top chest !have a look on you tube type breathing  exersises they will help !I'm assuming the inhaler is ventalin ( blue ) if it's the press and inhale I struggled as I have no co ordination ,,,so swapped to accuhaler ,( still ventalin ) tiotropium I have that to ,just put the capsule in and suck in ,

      in the mean time light exersise to get the oxygen into your lungs ,just walking at a pace quicker than normal ,if you get out of breath stop and rest then start again ,do sit to stand on a dinning chair ,sit on the chair fold  your arms  & stand repeat and repeat for 2 minutes ,or just do steps on the first step of your stairs ,,my hese should open your airways ,ask your GP /nurse to refer you to pulmary rehab course ,it's run by specialist copd nurses they are brilliant it's an 8 week course ,medication & breathing technics and light exersise ,trust me on that ,,,,they are brilliant ,if you read comments on here almost everyone has felt the benefit from it ,but you will only get out of it what your prepared to put in ,I was diagnosed with asthma back in 1992 then copd Bronchietis and emphasyma in 2006 ,I'm 69 and go to the gym twice a week ,do please don't get down hearted ,and enjoy your  birthday ,,,but save some puff to blow out your candies ,

      happy birthday for tomorrow ,best wishes ,Georgina  

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  • Posted

    Hi, I have tiotropium (SPIRIVA) with handihaler. Once it gets into your system you should see a good improvement I did. Good luck
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    • Posted

      I hope you don't mind me butting in here about Spiriva.  

      I noticed an almost immediate improvement when I first started using it, but you have to be sure you're using it correctly:  ie take a deep breath, empty lungs completely, inhale deeply from the inhaler and hold it for as long as possible before you breathe out.  Repeat once.  Also, make sure you're cleaning the inhaler at least once a fortnight.  

      Watch out for the empty capsules which will show up if you can't inhale:  I learned at rehab that this has been an ongoing issue for years and if enough of us contact the manufacturers and complain maybe one day they'll improve their quality control:  I've had as many as 5 or 6 empties in a single prescription.

      I've been using Spiriiva for nearly 3 years and for the last few monhths I've also had a Symbicort (cortisone) inhaler which I use once every morning with at least a half hour gap after using Spiriva and again at night, which has almost totally stopped the all night coughing..    It can be used twice morning and night, but I found that gave me terrible leg & foot cramps, so I cut it back to one inhalation twice a day.

      Good luck!

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