Questions??

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(I have already posted this on another thread, but my comments are about half way down that thread, and might not get seen .. so I thought I'd post it separately)

*****

I'm 63, and was diagnosed with copd 5 years ago, and I have received more reassurance, and learnt more about the progress of this horrid disease during the one short hour I've spent reading this forum, than I ever learned from my doctor or any other health professional. Thank you all so much. Suddenly, I don't feel so alone.

There's much I still can't figure out, so I'm hoping I might get a few more answers here:

My copd was diagnosed 5 years ago as 'mild', and I will admit that I was in denial for years .. I had absolutely no symptoms, no cough, no fatigue .. nothing. Walked a lot (fast!), ran up the stairs, never got tired, went to gym .. I actually thought I'd been mis-diagnosed, (and even carried on smoking, fool that I was).

Then, just over a year ago, I caught a cold, along with a bit of bronchitis, and it took quite a while to clear up. So I stopped smoking. It cleared up, everything was fine .. and six months later, I decided (just out of interest) to go for another spirometer review thingy. Happily, it was a huge improvement on the previous one, and I was really chuffed! I was told that with regular exercise, a good diet, and the proper medication there was no reason why I shouldn't live a realitively long and healthy life. I thought I'd cracked it!

Then, about a fortnight ago, I wasn't feeling well and developed a dry, hacking, sort of 'choking' cough ..I was in real trouble.

Anyway, to cut a long story short, after two visits to the docs (blood oxygen levels great, no bronchial infection) another chest xray (still waiting for results) a referral to the local copd clinic (for which I was turned down .. not enough funding to treat 'mild' copd, apparently .. only 'late stage') and some very helpful 'counselling' on how to manage the anxiety of living with a chronic illness, I wasn't much further on. Still had this goddam awful cough. My poor lungs ached so much, and my chest was so raw, I was sure that one more serious bout would finish me off! It doesn't help that I panic like mad when I can't get me breath ..

Thing is ..It's just the cough! No phlegm, no infection, no 'fatigue', nothing! I can cough solid for half an hour, attempting to 'bring something up' and the results might be one tiny speck of perfectly clear sputum. It was driving me nuts!

I almost begged the doctor (and the Triage nurse) for a cough supressant .. even if only so I could get some sleep, but they refused .. kept reckoning I 'have to cough up all the gungy stuff'. That I don't HAVE any gungy stuff, seemed to go over their heads!

So, this afternoon, in desperation, I typed 'hacking choking cough, no phlegm' into Google, and it returned hit after hit about this years seasonal flu. Seems it's one of the symptoms.

Went straight to the chemist, bought a bottle of Bronco-stop (that new one thats advertised on the telly right now .. supposed to stop all kinds of coughs) and within an hour my coughing had calmed down and for the first time in days, I had blessed relief and now (for the moment at least) I feel fine.

My questions are .. (a) has anyone else here had the same sort of non-productive 'chokey' cough, and (b) does anyone find that because they've been diagnosed with copd, that, AS A PATIENT they become defined by the disease? I mean, that the doctors just ASSUME it's the copd playing up (getting worse?) Is it possible I might simply have had a touch of flu?

Personally (and I know every GP practice is different), my doctor has been been little help. I know General Practices are very stretched, but I always get the impression I'm wasting her time, and that she obviously thinks I'm one of 'The Worried Well'. I'm just fobbed off with more medication, and 'referrals'.

I have copd. I KNOW, that the damage to my lungs is irreversible, and I know that for the rest of my life, I'll probably be more surceptable to lung problems than most people, but I want to learn how to MANAGE it, so that my QUALITY of life will be the best it can possible be. The thought of being confined to a wheelchair, with an oxygen mask glued to my face, is too depressing for me to even contemplate. I'd rather top meself, I think.

Oh .. one more question: Does anyone have problems swallowing? Sometimes, I find it difficult .. food 'goes down the wrong way' and I start choking. I realise it might just be anxiety .. but I'd be interested to hear from anyone else who does.

I seem to have been typing for hours. Such a relief to find this site.

Thanks in advance for any replies.

Jo

1 like, 14 replies

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14 Replies

  • Posted

    afternoon Josephine! Just read your message & question! I understand your frustration of not really knowing where we stand! I was also diagnosed the begining of last June with c.o.p.d had months of an irritating dry cough but then some time after when I had a tooth infection that made matters worse & two courses of antibiotics that wasn't shifting the infection I had a feeling some thing just didn't seam right! so the coughing continued to get worse even thoght the infection seamed to have eased up ( but laying dormant) the coughing along with digusting phlem was getting ridiculouse, so was sent for an x-ray as I requested it & my doctor said if it's anything serious I will be asked to see the doctor asap which to cut a long story short is what happened.

    So I went back to see our GP who said the lungs look clear but possible c.o.p.d note the lungs look clear so why was I asked to see the GP straight away though I couldn't go straight away on the day as the hospital's computer system was down & it wasn't an ordinary x-ray I can't remember what it's called but it's suppose to get to the doctor straight away they didn't get it untill the Monday ( of June & I had the x-ray on the Wednesday or Thursday of the few days before! Well I got to the doctor on that monday with my My eldest daughter & that's when the doctor confirmed that i have c.o.p.d so it was hellish for a while & still is at times but since being on the medicines trial & error at times as the symbicort didn't help & the salbutamol helped with the breathlessness & the third lot of antibiotics only finally cleared up the infection or so I thought that life became a bit bearable but then I've had two more infections since last one the ending of January to begining of February & still don't feel too well! Now i dont know if I still have c.o.p.d as my fev-1 levels have risen quite a bit & my pef levels are still in the red zone with the spirometry readings & you can see if you've done it right because there's no exclamation mark next to the reading! when there is an exclamation mark it means poor effort so you have to try again taking a deep breath & blow through the meter with your lips sealed round the mouth peice/part of the monitor/spirometer  have you ever tried either a manual or digital spirometer you can buy them online or some chemists that way it gives you some kind of idea where your at I would recomend one that tests & shows both the pef & fev-1 results there is Iknow of the digital piko-1 & the piko-6 the piko -6 is specifically for c.o.p.d the first is for mainly asthma but you can use it if you have c.o.p.d I have the piko-1 also the emini wright digital standard peak flow  meter which i shouldn't of bothered with as it only shows the pef levels what ever the pef means any idea!? well I 've got to go now but your welcome to leave a message anytime have a good day & I will be intrested to know how you get on!?   

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    • Posted

      Hi Karen,

      It's was all a bit bewildering at first isn't it? My doctors didn't seem all that fussed .. so I guess I wasn't, and like a typical ostrich, I buried my head in the sand and tried to forget all about it.

      But it's always been in the back of my mind .. niggling away, and I knew one day I'd have to face up to it.

      I haven't tried any of the meters you mentioned, but I'll speak to my doctor next Tuesday, and see what she recommends.

      Thanks

      Jo

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  • Posted

    Hi Jo,

    the most important thing you have said in your post is 'I have stopped smoking'. Well done! It is sounding how many people continue despite the evidence. Mild COPD should not distress you. If you stay off the cigs and get early treatment for chest infections then you will not end up in a wheelchair on oxygen.

    mild COPD often does not need treatment except that you should have an annual flu jab ( unfortunately nearly useless this year) and the one off Pneumonia jab to protect against pneumococcal pneumonia. 

    The dry cough you have had is very common this winter, a lot of people are suffering. It is very difficult to suppress but if it is not giving you nasty phlegm or breathlessness then it is much less worrying.

    Inhalers and other meds can be helpful if you have wheezing or shortness of breath.

    there is some great information on his web site under COPD.

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    • Posted

      Hello geepee,

      Thanks for the reassuring words.

      I asked the practice nurse today if she could let me have my readings .. because I'n noticed that everyone here seems to have theirs.

      She could only give me four .. and I'm not sure I heard her properly so I might have written them down wrong. I'd really appreciate it if you can you tell me what they indicate please?

      They are the latest ones (taken in November)

      FEVI/FUC: She said '2.25' .. and then she said '80%', and then she said '1.63'. I have no idea what they mean.

      FEF: (oxygen in blood??) she said was 99% .. normal.

      When I go to the doctors on Tuesday I'll get a proper print out.

      What I need to know .. is which ones do I especially have to keep a close eye on?

      *****

      I have no nasty phlegm, and only slight breatlessness, but after I'd done the copd exercises, and came back from me walk .. the coughing started again. I wouldn't mind so much if I were 'clearing gunge', but there's no phlegm at all, just the damn horrible nasty choking cough!!

      Should exercise be followed by coughing? Is that a good thing? Because I really don't want to cough.

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    • Posted

      FEV1/FVC, means the ratio between FEV1 which is the amount of air you can blow out in the first one second after a big breath in, divided by the FVC - the total amount of air that you can blow out of your lungs. This ratio is reduced in those with COPD. It has to be 70% or less to be COPD. The two numbers you quoted 1.63 and 2.25 are the two measurements FEV1 and the FVC in litres or air. Then it is simple maths - 1.63 is approx. 70% of 2.25.

      actually by my maths that is 72% and therefore JUST above the threshold for diagnosis. The only symptom of COPD you have is the shortness of breath. I don't beleive That the annoying choking is anything to do with your COPD. COPD(by definition) does not affect the upper airway but of course smoking can damage other parts of your body like your vocal cords and pharynx(back of throat ) and contribute to reflux.

      What you haven't qiven is the figure for the FEV1 AND what percentage predicted that is. In other words how does it compare with the normal for your age height and gender. FEV1 depends on all of those factors. If your height age and gender have been programmed into the doctors spirometer then the machine will automatically compute those figures. If not then it is more tricky to work out but there are on line calculators that can help.

      have I lost you? Sorry if that is too complicated, but if you can give us the 

      FEV1 (percent of predicted) then it is possible to tell you if it is normal or not!

      so on the original result for FEV1 the will be a number in litres and another number in %.  okay? Clear as mud?

      G

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    • Posted

      Not so much 'mud' as claggy treacle, I think (grin).

      I used the 'Spirometry calculator' provided on the site, and after entering me readings, it came back with this:

      FEV1(L) - 1.63. Predicted - 2.04 .. 79% (normal)

      FVC(L) - 2.25. Predicted - 2.51 ..89% (normal)

      FEV1/FVC ratio - 72%. Predicted 81% (low, consider copd)

      PEFR (L/min) 368

      (From November last readings)

      So i'm figuring that I may have 'mild' copd.

      But from everything I've read here, mild copd should be quite manageable, right? Then why am I coughing so much and in so much distress??

      It just doesn't make any sense to me. It's so confusing.

      Jo

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    • Posted

      Good, confirms my maths. FEV1/FVC of over 70% is normal. But only just so it is a warning sign to stay away from smoke and pollution. The dry cough might be due to something else. Some medicines do it. Are you only Blood pressure meds? Could it be an allergy or hypersensitivity to something in your environment ? Post nasal drip tends to be moist. Reflux can do it. Sometimes after a virus infection it can become a habit and sometimes to break the habit you can suppress it with an antihistamine (not licenced for this purpose) or codeine syrup/suspension for a short while (so as not to get addicted!) get your GP or prescribing nurse to think outside COPD which if you have it is incredibly mild and borderline.
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    • Posted

      I'm beginning to think you're right. I was discussing my 'choking' cough with one of the medical staff at the 'pharyangeal disorders' clinic yesterday (I'm being referred to them for a 'swallowing evaluation', and she said that my 'choking' episodes sounds more like 'laryngeal spasm' than a symptom of worsening copd or a problem with swallowing. And advised that I ask my doctor to refer me to an ear, nose and throat specialist. I'm seeing my GP on Tuesday. I'm still go ahead with the 'swallowing' evaluation though. Best get it all sorted out while I get the chance, hey?

      As for my copd .. I am EXTREMELY relieved that it's still seems to be in the mild stage (I honestly believed I was for the knackers yard!) but even so, I'm determined not to become complacent. The tips, advice, and excercises I've learned here have been invaluable, and I can't thank you (and everyone else who has answered my concerns) for setting my mind at rest somewhat. Yes, I know I'll always have to be careful, take my meds, eat properly and stay as fit and healthy as I possibly can .. but now I have the INCENTIVE to do so.

      I'll come here regularly and keep you 'in the loop' about any 'outcomes', and once again .. thank you all very very much.

      Jo

      Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details or Google laryngeal spasm.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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  • Posted

    Hi Josephine,

    you have probably read my story on this forum so I won't go over it again but one thing you mentioned that really caught my eye....problems in swallowing!! I thought I had a "lump" in my throat! I would get food especially chicken stuck and then it would go down slowly and was so painful that tears ran down my cheeks!  It doesn't happen all the time... but tests have ruled out no tumor or obstruction. Puzzling! If you search for my original post it will give you my experience and history. smile  Cheryl

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  • Posted

    Hi I don't know a lot of the figures but 99% oxygen level is fantastic.   The 80% refers to your lung capacity.  But bear in mind it is not 80% of 100% it is 80% of the normal for your age,  weight and height.   This shows very mild copd.   

    Do you have any wheeziness with your cough?  If so this could be asthma.  It is common to have this with copd.   Other things can trigger coughs - ie dust mites,  traffic pollution,  common cleaners etc.  You might find it eases a bit if you try cutting down on dairy food as this can make a cough worse because they are mucus producing foods.  

    Bev x

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    • Posted

      Thanks to everyone who's been so kind as to answer my questions. I have one more VERY troubling symptom .. and It's very distressing. I find it quite difficult to explain, so please bear with me and I'll do my best:

      I am absolutely TERRIFIED of coughing (which doesn't bode well for someone with copd, I know, because I'm going to be doing an awful lot of it!) I'll try to explain why.

      The doctor told me when I was first diagnosed, that the lungs comprise the LOWER respiratory tract, and the UPPER respiratory tract (I think I've got that right) and with copd sufferers (or maybe just in my case .. not sure) it is the upper respirory tract which is damaged. Now if you can imagine having a really sudden bad bout of tickly coughing .. mostly, it's 'reflex' .. ie, you can't control it and it takes as long as it takes. But one thing you HAVE to do, is take a quick and deep gasp of air as soon as you're able.

      THAT .. is when I really really get into trouble. I just cannot take that 'deep breath' .. my lungs seem to get stuck in a sort of spasm, and there's not enough 'strength' in them, to re-inflate enough to 'come back up again'. There are times (and this is no exaggeration) I think I'm literally going to choke to death. It is the most terrfifying thing I've ever had to go through. Therefore .. when I get a cough, I live in dread and fear that at any minute, I'll get an especially bad bout, and that my lungs will simply pack in, and that'll be it!

      Past couple of weeks, I've hardly eaten for fear that I'll aspirate some food, and it will bring on a bad coughing fit .. anything I do eat, is in tiny portions .. same with drinking. So scared It'll go down the wrong hole.

      It isn't helped by the onset of post nasal drip .. which (although improved with a nasal spray) can still result in that horrid tickly throat .. and consequently I start coughing.

      I sometimes daren't even go to sleep in case the dripping happens in my sleep. And .. for some strange reason .. sometimes I seem to be producing too much saliva too!

      I've tried to explain it to the doctors ..but they just don't seem to understand what I'm on about (nor care much either) .. So I'd be ever so grateful for any advice or reassurance about this problem, because having to live with the fear of dropping dead at any minute, is making me thoroughly miserable. Freaking me out, in fact!

      I have been referred for a 'oral-pharyngeal swallow evaluation' .. to see if there's an reason why I'm aspirating food into my windpipe ..but no appointment yet. They told me that I have to go on the community waiting list .. and it could be months before I get seen.

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    • Posted

      No wheeziness, Bev. But I have cut down on dairy, and it does seem to have helped. (but then I might just be imagining it).

      And I do have cats (2) .. and with spring coming on, they are shedding more than usual. And as they think its THEIR house (as cats are prone to do) it's difficult to keep on top of it completely.

      Jo

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  • Posted

    I have been taking care my father who has COPD for years. Yes you are right, you may be facing this swallowing problem few years later, so please start to exercise your throat muscles by swallowing the salivia whenever you can.
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  • Posted

    It is soooo reassuring to know others are experiencing a 'hacking' cough.  Mine has been going for the past month, I have had a chest infection that took 2 lots of antibiotics to clear (back at docs next week to check) but the cough is still with me.  I am drinking bottles of water and cant pinpoint what sets me off, it isnt even at set times or dependent on what I am doing.  I am waiting for an app for the pulminary rehab, so in limbo at the moment also I have been on a lung study that is due to end so havent had a review yet. If anybody has any more suggestions to help me control the coughing I would be very grateful.  Like you Jo I am grateful to have find this site at least we know we arent on our own.
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