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Diagnosis of COPD - panic

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amanda50863
amanda50863

hi all, just found this forum. I was diagnosed two weeks ago. I was told you have COPD, use these inhalers and we will see ipyiu in three months and duly sent home with printed material to read.  Freaked out the whole week, hardly slept and felt upset after I googled and read what COPD is and the affect it has. I feel I have been left to get on with it..Should I be seeing a specialist at the hospital and having chest X-rays? What's your experience been? 

Thanks in advance, 

0 likes, 36 replies

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  • kayc123
    kayc123 amanda50863

    Posted

    This just happened to me too about 3 months ago amanda, except I didn't get any printed material. I think it's just the norm when you are mild to moderate they just give you inhalers. Mind I did have a chest x-ray as I have had breast cancer and was worried that my breathlessness was because it had spread to my lungs. Did you have a spirometer test at the GP's?
    • amanda50863
      amanda50863 kayc123

      Posted

      Hi kayc123 ..yes I took a spiro test . It's such a serious illness and I was shocked that I have just been told in a casual fashion. I asked will it get worse and was told "everything gets worse" here's something to read. It's such a serious illness you would think a referral to a specialist was in order and also to a support group. i have a bad cough this week, bend down and pain rushes to head..think it's just a normal cough and sinus bug..but how can you tell when it is an unrelated cough? How was your chest x Ray..must have been such a worry. 
    • josephine_30311
      josephine_30311 amanda50863

      Posted

      Hi Amanda,

      I think everyone handles it differently .. but if you're only borderline, there's no reason why .. with the right diet and exercise, and a positive attitude ..  you shouldn't lead a perfectly normal and active life for many many years to come.

      To be honest, when I was first diagnosed, I thought they were kidding .. I had no symptoms .. nothing, and I've only had one bad episode in all that time, and that was when I picked up a flu bug a few months  back.

      It has made me more careful though .. In the winter, for example, I  try and avoid crowded shops and such like, for fear of picking up bugs, and I'm always always washing my hands.  I also use First Defence at even the vaguest hint of a cold or a sore throat. I dunno if it works or not, but it's an extra weapon in me arsenal (along with blueberries haha)

      When first diagnosed, I think most people tend to panic, and that can be a very lonely and frightening place to be .. so have you considered asking your GP to refer you to Open Minds? It specialises in counselling people who live with chronic illnesses, and I found them to be absolutely fantastic! Just to be able to TALK to someone who understood (and get angry with the world, and have a damn good cry too) .. was such a relief.

      Most importantly, don't worry. You'll cope. And you'll always find lots of help and advice on this forum.

      I don't know what I'd have done without it.

      Good luck!

      Jo

       

    • amanda50863
      amanda50863 josephine_30311

      Posted

      Hi jo..many thanks for your comments. Yes it has felt lonely, I've been hiding my feelings from my family and playing it all rather like having a common cold. Underneath, I have been worried and I know my eldest son is worried, as I can tell by his many visits and constant checking if everything is ok. Not mentioned it to my other son and daughters yet, as I said I am playing it rather cool and mentioning it in a natural conversation. Don't really understand it myself yet and having someone to talk to would be really helpful. Thanks for your encouraging words, x
    • amanda50863
      amanda50863 josephine_30311

      Posted

      I should add..my husband has been a good support, but clearly I was more stressed than I thought..(I have an extremely busy job role) and 3days following diagnosis, I broke down  early one morning in a casual conversation with a colleague..he was so calm and understanding and his caring comments have got me through the last week. I am comforted to know this forum is here and you guys are there for support.  Thank you everyone x
    • kayc123
      kayc123 amanda50863

      Posted

      My chest xray was fine (don't trust them though as they said my mammogram was fine after I presented with a lump,it was only after I went back 8 months later that they said it was stage 3, grade 3, invasive, but that's another story lol)). It was a shock as I had presented with shortness of breath climbing stairs etc & also when relaxing, no cough & as i have had sinus problems for over 30 years presumed it was just congestion.I was waking up at 4 am, tight chest & throat, feeling like no air was going in, consequently giving me an anxiety attack which resulted in me pacing round the house. My Fev was 78% and he said that is just at the top end of moderate moderate. I presumed I would be referred to a consultant however was told not severe enough for that! Gave me ventolin & said if I was having to use it every day to come back & he would give me a long lasting preventer. I went back after 2 weeks & was prescribed seebri breezhaler which is a capsule you put in a little canister & inhale once a day.During this time my anxiety attacks mostly stopped as I knew I could take my inhaler, still thought it could be my heart or something else though. Anyway, still using ventoiln every day so went back again 2 weeks later & was prescribed a green inhaler, serevent which I am to take 2 puffs x twice a day, alongside the seebri.On reading the contra-indications it said do not take with atenolol, which I take, after contacting the pharnacist & Gp they assured me I was safe to take it which I did &I didn't die lol. Still taking my ventolin most days because I feel like a veil is over my throat & no air can get in, however this is always at rest as I go on my exercise bike 20 mins, twice a day as they say apart from stopping smoking ( which I did 12 years ago) this is the best thing you can do to halt the progress of copd, & to be honest I'm best when I'm on the go. The times it gets me the most is dancing, I rarely go out but when I do I love a dance or 2, however since last october I can only do one dance ! Have to sit down and recover, maybe it's because I'm 59, you have to slow your dancing down? The other time is about 4 am, however I sleep with 4 pillows now & it has helped...but the good news is MOST times I don't panic now, I know it will pass smile I also joined the British lung foundation forum & discovered that copd affects different people in different ways, some people with a fev of 68% work full time & don't have to use inhalers, whilst otheres in the early stages, like us stuggle. Maybe when we get our heads round it we will cope easier, I hope so! I lost my Dad to COPD, however he had it for over 20 years & continued to smoke for most of these years, only when he went on home oxygen he had to stop .I've waffled on because you asked for peoples experience so I've told you mine smile. I think you are doing the right thing asking to see a consultant, however I know I don't stand a chance, it's like my GP was telling me I have a cold! I'm sure we will both live for another 20 years or more, once we get the right inhalers and mind set,

      Take care,

      x

    • amanda50863
      amanda50863 kayc123

      Posted

      My goodness Kay..thanks for your time on a Saturday evening. Feeling much more positive from our discussion. Just shared out conversation with my husband...I think his head is in the sand..we just had a little stroppy moment..but fine again! Cough, cough! I love the dancing good for you! I remember being out of breath many years ago dancing, so that's not a big change!..plan of action: draft a diet book for copd sufferers..you got any recipes or tips? Then get an excercise regime in place...how fab if we could win lottery and develop a health break for copd sufferers!? 
    • jude65855
      jude65855 amanda50863

      Posted

      "Everything gets worse"?  What a stupid comment from whoever made it!  I haven't found the specialist to be any more help than good gp's or the practice nurse:  he didn't even refer me to rehab, just mentioned it casually & in passing as I was leaving his surgery, so I assumed it was something I'd need to attend down the line.

      Fortunately I googled lung rehab and found a group fairly close to where I live, but no thanks to the specialist.

      The physios and nurses at rehab are much more approachable and and have the time and expertise to answer questions and give advice.   Yhe practice nurse at my now gp clinic does spirometry tests.

      If you have a bad cough with chest pain you need to see your gp to check it's not pneumonia and you should also have flu shots every year     

  • terri69807
    terri69807 amanda50863

    Posted

    I am new to the whole copd diagnosis and community myself Amanda.  I will be

    thinking about you and pray for you.  Hang in there.

  • Nanny1086
    Nanny1086 amanda50863

    Posted

    Hi ,who diagnosed you im asuming from what you say it was your GP ,? How old are you ? ,

    im aged 69 ,I was diagnosed back in 1992 ,with asthma ,some Bronchietis some emphasyma / copd ,I take 3 inhalers ( used to take 2 ) ,ventalin ,seratide and tiotropium ,I've had a few admisions to hospital over the years the last one was dec 2013 ,in 2008 I was admitted to ICU ,and when I was discharged I was told a team of copd nurses would take care of me at home .and they did and continue to do so ,I went to their first pulmary rehab in July 2009 .and I learned so much about the illness ,from exersise ,breathing technics,and education of the illness ,and medication and why I take it etc etc, from going to pulmary rehab ( at our local leasure centre ) I was asked if I would go into the gym ,at first under supervision ,andd from then on I continued to go twice a week along with other copd patients who have done the 8 week course at PR, ,,,yes I have had admisions into hospital over the years ,and too many chest infections for me to count ,,,,,but ,,,last week I was at the gym and I did 2 Klm on the tread mill in 24 minutes and 3 Klm on the bike in 10 minutes,so you see ,,,,just because you have been told you have COPD it's not the end of the world ,,,,,,take your medication ,if you smoke ,,,THEN STOP,,,,,,NOW ,,, and exersise ,,,even a walk is better than sitting on your backside like I used to do ( because I hot breathless) ,yes I still get breathless ,but when I'm well ,,,,I'm well ,and for my age I think I do ok ,

    I told you my story to try to put your mind at rest somewhat ,,,,and I hope I have ,,,,ask your GP to refer you to Pulmary rehab ,they are a team of COPD specialist nurses and physio's ,they are brilliant ,will give you lots of imformation and health care, in my opinion ( better than a GP ) haha,

    take care ,keep well ,and ask for the imformation you need ,and yes I would ask to be refered to a specialist ,

    • amanda50863
      amanda50863 Nanny1086

      Posted

      thanks Nanny1086.. Informative and helpful.  I am 52 and quite young fir my years, generally quite fit. I stopped smoking over 7yrs ago ( never had a problem when I smoked)..The nurse at the go survey diagnosed me. i visited my GP last year with a chest infection and was told when you reach 6yrs no smoking your lungs are like a non smokers...how wrong was she!! sounds like you keep active Nanny1086 and an inspiration thanks. 
    • jude65855
      jude65855 amanda50863

      Posted

      Just a comment on your GP's misinformation, I'm so angry that this particular lie is still being spread around by doctors and government campaigns.    The Quit campaign in Australia has been lying to the public about this for decades and I believed them:  had I known there was a point beyond which the lungs DO NOT recover from smoking I would've stopped long before I did.

       

    • josephine_30311
      josephine_30311 jude65855

      Posted

      Amanda wrote "was told when you reach 6yrs no smoking your lungs are like a non smokers..."

      Thats what I assumed too. And thats what all the hype sounds like, doesn't it?

      But when I questioned my GP further, it doesn't actually mean that I don't think.

      I think what it DOES mean, is that 6 years after quitting, the lungs of an ex-smoker will CONTINUE TO DETERIORATE AT THE SAME RATE as someone who has never smoked.

      .. I think.

      There's a subtle, but very important difference in the meaning, and Jude is right .. it's very misleading.

      Even so .. it gives ex smokers much more of a fighting chance than those who don't quit.

      Jo

       

  • Ada555
    Ada555 amanda50863

    Posted

    I'm also newly diagnosed Amanda with both persistent asthma and emphysema. ..fortunately both are mild. My lung function is 83% and I am now under the care of a pulmonolagist who changed my Advair to Symbicort Tubular which is helping a lot. I freaked to begin with but am a member now of a few fb groups where I have learned a lot. I had a pft test, chest xray and chest CT scan as well as nuclear stress test. My main symptom is shortness of breath and a tight chest causing a dry cough. The most important thing we can so for ourselves is eat healthy and exercise to work the lungs.
    • amanda50863
      amanda50863 Ada555

      Posted

      Hi Ada55.. Thank you too for your response and sharing your experience. I am learning the technical medical terms and it sounds as though you have had a thorough examination. I had whooping cough 3yrs ago, the following winter a chest infection and was given a general inhaler to calm the cough down, again last winter a cough and only last month tested for COPD after another chest infection. Since I found out, I feel more short of breath and a real heavy tightness in my chest though it's likely I am feeling worse as a result of my panicking.  Feel quite fit generally. Not sure what my lung function is..I recall her saying something about 38% at the bottom of lung, 48% mid lung and 98% top of lung..my spiromtery test was in the 70s it's all a bit confusing for me. I am considering booking a private appointment with a pulmonologist, not sure how to go about it.  I have an appointment with GP next week to request a referral to a specialist. I don't want to sit back and wait for the onset, I want to be well informed and have a plan to help keep it under control.
    • jude65855
      jude65855 amanda50863

      Posted

      In my experience and that of others I know and people on this forum, a pulumonary specialist can't do anything your gp, practice nurse and/or rehab group can do, in fact often less.   They don't have a cure and can't prescribe anything a gp can't.

      A rehab group will give you much more practical information than any pulmonary specialist can

      It sounds as if your lung function is over 70% which isn't too bad, but to be sure can you check with whoever did the spirometry test?  

       

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