The fear of diagnosis!

There have been a number of posts from very frightened people having just been diagnosed. I have been answering posts and putting in my thoughts when I think they could help. But it occurred to me that the most worrying thing about COPD is the chronic element. Usually we go to the Doctor and get a tablet which makes a vast improvement or cure (simplified but you get the gist!) - COPD is a different beast altogether.

Each patient is different, each patient has to become an expert patient by listening to their bodies, learning what triggers an exacerbation or makes you more breathless or starts the coughing and to keep asking the doctors. If you don't feel right go back to the GP - our lovely doctor agrees that my husband and I know more about his illness than she does.

If you have been diagnosed please talk to the BLF helpline and ask questions of your gp and nurses. If you think the medicines aren't helping go back and ask them to be changed. Come on here and ask questions. If you don't feel well ask for advise. These would be my top tips:-

1) Stop smoking

2) Keep fit - ask for a referral to pulmonary rehab. from your doctor/nurse and keep asking!

3) Get a flu jab

4) Get a pneumonia jab

5) If you think you are starting with an infection - go to the doctors don't wait

6) Take you meds. If you are having side effects go back to the doctors, if they aren't working how you hoped - go back and ask. There are lots of meds available.

7) Listen to your own body and learn - you will know best

AND

8) ENJOY YOUR LIFE - things may change and alter but they would anyway - enjoy each day. The good memories will keep you going when things aren't as good!

Take good care of yourselves. With much love TAD xx

48 Replies

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  • This is excellent and positive advice, Tadaw. It needs to be framed to refer to whenever things are down. Thank you.

  • What a great list...thanks for thinking it through and posting it

  • Great post TADAW. :)

  • Excellent advice, something you are not given when they tell you what is wrong. Could I add something else, as a carer you learn to recognise your partner's symptoms and help/treat accordingly but please remember to look after, and listen, to your own body as well. Can you tell I am feeling really fed up at the moment as I did not heed my own advice and have had a bad chest infection for nearly 3 weeks, oh well off to the GP in a moment.

  • Oh Second Life that is miserable. Good luck with the GP and hope you are feeling much better very soon. Take good care, TAD xx

  • Good one Tadaw,well thought out,& take heed of what second life wrote! xxx

  • Nothing to add excellent advice your body will tell you when you are not well

  • Thank you!

  • ha tadaw,my hats of to you there ,you and your family a long life ,bernicexxxx

  • Really great post full of sound advice

    Best wishes

    Jo :-)

  • Well done TAD. Very good advice. I have a wish list - No 1 Doctors should be trained to LISTEN! :-) :-) Alison

  • Definitely especially with chronic illness! X

  • Great advice.

    Lynne xx

  • Thanks for the words of wisdom Tadaw, I'm in the process of a new doctor querying where my pulmonary rehab referral as got lost as it is nine months since I was referred. Flu jab early on Saturday which helps to keep bugs away in the winter. Everyone has to look after themselves with some support at difficult times. Have a good day

  • Hope you get that referral sorted out - the sooner the better. Sure it will be helpful. Please chase it up if you haven't heard back soon! TAD x x

  • Thanks will be doing just that if no referral soon, as I have been told it would at least give me access to a respiratory nurse

  • Thanks Tadaw, it needs to be framed and then used to slap a few bad docs round the earhole :)

  • It was very kind and thoughtful of you to do a post like that. Well done I'm sure it will be of comfort and help to all the new members.

  • Good advice Tadaw, its the very reason I always say after stopping smoking, PR for all diagnosed lung patients is the next best thing. I say this because all things are covered on this course it gives such a great understanding of our illness and gives us the tools to help manage things in the best way we can slowing down the progress of further lung damage and deterioration in health, at the same time diffusing some of the anxiety, fear and emotional upset. It does take a while for people newly diagnosed to come to terms with the illness and learn to manage the symptoms, at the same time making adjustments in lifestyle, eventually things do become so much easier with learning to manage our illness to the best of our ability.

    I agree such a list should be framed and made available to every patient who is diagnosed.

    Couple more things to add onto your list:

    "eat a good diet"

    "wherever possible avoid contact with people who may be infected with a cold or flu virus"

    Good post helping the new members become more aware.

    Best wishes BC

  • That's a great list of Top tips TADAW. You've kept it simple but not missed anything. Anyone new to this disease should print it off and keep it handy as its all very sound advice.

    Tony

  • Great advice TAD! xxx

  • wow tad thanks and is so true have always said that we need to listen to our gps but we do know our own bodys and how we feel has well..has believe it or not i have been to my gp and have said that i think that the meds i am on are to strong at the moment and not ready for them yet so he cut my dose to half the strenth and i can still breath just has good but no cramps or joint pain and no huskey voise ( sorry about spelling )

  • Good for you music well done. Long may you breath easy! TAD x

  • Hi music - what meds are you on now? P

  • hi peeg i am still on seretide but cut it down to 250 instead of 500 and dont always have it twice a day

  • Tadaw it was really nice of you to take the time to put this together, much appreciated xxx

  • Hi, wasn't having a bad day today, chest infection seemed much better. Diagnosed last week with copd, happy days!.... Then back like a ton of bricks!.. ; (. My biggest worry at the moment is work. I suppose you could say I work in construction, but most of my job is working nights in all weathers, I have been struggling for the last few years to be honest!, off work at the moment, antibiotics & steroids this week!, not looking forward to this winter!!...

  • Take care mr baz remember to look after yourself try vitamin c to avoid colds. Hope. Infection goes quickly TAD x x

  • You are all very kind thank you for your positive response. Such a great site with so much support. Onwards and Upwards! Take good care my virtual friends! TAD x x

  • Thankyou Tadaw, to infinity & beyond!.. Lol. Xx

  • Very good Tadaw, throw in a little humour with it !

    KOTC

  • Sometimes I can be quite humorous! X

  • Isn't it nice to share a laugh. Sure makes me feel better xxx

  • Very well thought out Tadaw. Something like this off the Dr in the first place, could have saved me the 14 month downward spiral into severe depression and crippling anxiety attacks caused by lack of knowledge of this disease.

    I know they can't tell us we're going to be ok, but they don't need to send us away thinking we'll soon be dead. It is encouraging people to give up on life.

    Angie. xx

  • casper 99,my doc said I wont live to be 200,thats suits me,lolbernicex

  • Sounds like a fun docter Carrotts. x

  • I know casper99 my husband was just left with a diagnosis and a lot of worry. I have learned to become much more proactive! Take care TAD x

  • I've been following your battle to get your husband back on track Tadaw, you've been a tower of strength for him.

    Your proof that we can't rely on anyone but ourselves and our virtual family when it comes to our health.

    Angie.x

  • Hi Tadaw what a brilliant list why don't we all print off a copy and take into our docs with further recommendations for this site and breathe easy groups??the Internet is very scarey too a newly diagnosed person,even if they don't have access to the net it can be very lonely living with this diagnosis.doctors forget we are human and will react in a variety of ways,ithink my practise would be happy I think to help,perhaps ask BLF for advice.iwish I had known this when I was diagnosed many moons back?your a genius Tadaw to put it down in black and white great stuff.Janexx

  • Genuis is a bit much!!!!!!!!!!!!!!! though appreciated!! x

  • Dear TADAW, now my friend forever!! Thank you for that, we have done all the things we should have done, laid in a store of antibiotics etc. etc., and I will now try to print your words which are not only for the people with COPD but us partners who worry, wait and - yes - pray to be able to cope with their beloved old spouses! I award you my gold star ...B... a NOT so worried wife (of 54 years) xxx

  • Hi worried-wife - I seem to spend my life worrying!!! It is such a scary diagnosis and out you go of the surgery with very little information. I am so glad that the post was helpful. Take good care TAD xx

  • Excellent Tadaw!!! Thank you so much xx

  • Great post Tad, it will help many newbies.

    Crumbs, if only I had realised at the beginning I wouldn't have wasted so much time & precious energy worrying, being fearful of the future, pretending I was OK, putting on a front, etc etc.

    I'm looking forward to a better future now thanks to people like you sharing your knowledge & experience. The only way I can return the favour is to do the same & share mine.

    A huge bouquet to you xxx Penelope

  • Thanks mate, first bit of good advice I've had

  • Thanks mate, first bit of good advice I've had.

  • And the same for other chronic lung diseases. Since being diagnosed I have been ill less. I do everything I can to stay well and enjoy life and at 33 I hope I have lots left.

  • Excellent advice Tad ;)

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