new here, COPD diagnosed recently

this is my story: I'm 60 yrs old, 4 yrs ago had heart surgery to have my aortic valve replaced with a mechanical one, following the surgery I developed an annoying cough, which has been with me ever since, I've been back and forth to the doctors all this time, but they couldn't find anything wrong or any reason for this cough; until August of this year when I told my doctor I'd had enough of this constant cough and needed something done about it, she gave me a Ventoline inhaler, which seemed to make the cough worse than ever, a spirometery test was done and she said I have COPD, gave me another inhaler, Spireva is it, and sent me on my way saying I had COPD because I used to smoke (I haven't had a cigarette for 15 years now! the doctor doesn't want to see me again! The cough is awful, constant the whole day long, when I wake in the morning I can hardly breathe and cough loads of mucus up, almost makes me sick sometimes, it's disgusting stuff, I cough up mucus all day long, I daren't talk for too long as it starts if off, I daren't laugh, I can't walk far, can no longer swim, most of all I feel devastated at being told it's COPD and wonder how long I will live. I could really do with some support, I'm so fed up.

33 Replies

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  • welcome 1st I would get back to gps and ask to me treated with a bit of respect,2nd ask if your on all meds available to you,also ask to see a consultant,you can ring blf up ,the number is at the top red balloon,bloudy amazing the treatment we are suppose to swallow,go back ,write it all down and stay till ur happy ,any questions u need answers to,please list them hear,dont worry people are stll around after 20 yrs or more,keep away from people with colds infections ,eat well and exersice,as best u can,get flu and phenmonia jab if you havnt already had it,breathe well ,bernicex

  • Hello! You have not been treated very well by your doctors! But in fact it seems to be that way with a Copd diagnosis. I care for my husband who has severe Copd - he had stopped smoking 10 yrs before his diagnosis . PLEASE ring the blf helpline in the morning firstly they have a great info pack about Copd and secondly they can offer you practical advise on meds etc. Try not to be to overwhelmed Copd is not a death sentence. You need some support from your health care team. This site will give you lots of support. Take good care TAD xx

  • Take heart Lucyannie I felt like you when diagnosed and gave the A & E Doctor who told me I had COPD a hard time, poor soul, he was so young. My Consultant at the Hospital is a lovely person and so thoughtful. All my medical team have been kind and considerate. Take the advise bernice gave you, go back to GP and stand up for yourself. Ask for a referral to a Specialist.

  • Oh, dear! This GP is another poor one. Don't let them treat with such a lack of respect. Lots of good advice already to ring the BLF helpline 03000 030 555 during office hours. They will help with further advice as to how you can maximise your treatment. Good luck.

  • Hello and welcome.

    Great advice as always, ring BLF help line, or point on here for a chat.

    And don't google big mistake.

    Kim xxxxx

  • Hello and a warm welcome Lucyannie you wont get that attitude from us!We are a friendly group of like minded who have a wealth of info and experience,support for each other with a few laughs along the way.Its always so disappointing to hear experiences like you have had.They have a duty of care!doesnt sound like you've had that as yet.What the others above have said is right i cannot add to that.Demand to be heard,The BLF are so helpful.Just a little note i have had this condition for over twenty years now and not planning on leaving for a good many years yet.This is all new to you at the mo so a little daunting and scarey.You will be fine i promise you once you are an informed person and the pros have explained your diagnosis to you that your happy with, you will start to live your life again.See you soon.:) Janexx

  • Hi and welcome Lucyannie. Tell your GP you want a proper diagnosis from a pulmonary consultant. That is the only way to get a correct diagnosis and correct medication. Any questions please ask.

  • All the best advice, can't say any more apart from get a CT scan this is the best way to diagnose Emphysema or any other under lying chest issues. Usually CT scan first then Sprimority test.

    Don't let the doctor's treat you second best, you and we all deserve better.

    Keep fighting it.

    David 1968

  • Cant better than what has already been said but welcome. Plenty of support and good humour here. Joyce

  • Welcome Lucyannie, and welcome to the family. Berwick xxx

  • Agree with all the others and definitely think you need a ct scan. Sounds like you have been through such a hard time and need taken care of preperly! M

  • Hi Lucyanne, I know what its like to cough all the time...even talking on the phone can be a nightmare. I agree with the others that you need to be referred to a consultant..I don't care about making a fuss anymore....ring your gp.

    Can you ring the BLF helpline today and ask for advice too.

    If I use too much Ventolin I get a different sort of cough from the chesty one, and usually when I move.

    There have been lots of ideas on this site to help with a cough while you wait for more treatment including taking Manuka honey...I have found this very good...but it is expensive so I am trying normal honey to see if that is as good.

    Best of luck

  • Hello lucyannie, Sorry your GP is a bad one, I have copd and bronchiectasis, can just say you need to go back simply to ask for some antibiotic's to clear up your infection and tell the doc you are very unhappy with there attitude. hope you get it cleared up.

  • Welcome to this site some lovely people aboard ! Ask and you will be helped as much as possible take care !!

  • welcome to the site lucyannie, your cough could have more than one cause. I would be asking for more info and help from the doctor including referral to a COPD specialist. Although you gave up smoking a long time ago it could still be COPD, however a GP normally needs further tests to establish this diagnosis for definite. Good luck

  • Excellent advice above. Do go back and see your GP, or another in the practice.

    I have bronchiectasis (60yrs!) and have learned that some GP's err on the side of 'simplest first' so the give you the minimum meds for your condition and wait. If you go back they up the meds, then do a few tests, then another med, then if you are still returning they will refer you to a consultant...... Even after all these years some new GP's still try to do this to me but I have now learned how to fight my corner.

  • Hi Lucyannie,Yes this is a very friendly and helpful site, but you really need sorting out , all the best Heather.X

  • Hi Lucyannie and welcome I was diagnosed with COPD 10 years ago and like you I was told it is because I smoke, sent away with a blue inhaler was called back every year for a test I was never told what level I was my GP was about as much use as a ashtray on a motorbike. I would insist on a chest x-ray you might have an infection and look at changing your GP as I did.

  • Hi Lucyannie and welcome. I was also diagnosed last March by my GP who thought I had COPD due to smoking

    He told me if I didn't stop I would be dead in 2 years. I,like you panicked and thought it was a death sentence, but the

    good people here put me right and I saw a consultant who diagnosed Bronchiectasis and told me I would live for quite a few years yet (barring being run over by a bus) So chin up and go back to your GP with loads of questions(write them down) as I did and you will smile again :)

  • I spoke to a respiratory nurse today at BLF, she thinks I have Bronchiectasis! she told me to ask my GP for a CT Scan to clarify exactly what's wrong, can you tell me about your symptoms and how you came to be diagnosed with this, also how do they treat and manage this thing? :-)

  • I started of with a chest infection last December that would not go away so after 4 lots of antibiotics my doctor decided in his wisdom that I had COPD and gave me an inhaler (Blue). No tests were carried out.I was not happy with this as it was not helping at all so I went back and asked to be referred to a specialist. Fortunately since I had medical insurance, through work, I saw one very quickly he sent me for a CT scan and a spirometry test and diagnosed Bronchiectasis, which he say's by the way is not normally caused by smoking. ( It did not help though) I think you really need to see a consultant. I hope the BLF nurse put your mind at rest re life expectancy and that you now feel less worried. The treatment is different for everyone, I believe the important thing is managing our

    symptoms.. Chin up Luv PT :)

  • 17 years on and still going

    KOTC

    Your daily humour tonic

  • Wow! When I was diagnosed with bronchiectasis I was told by the consultant that it would kill me, and within a short time. I've been living in terror for the last 6 or so years believing my time was almost up. Because of that I've been too scared to even learn about my illness, and too depressed to keep up with the exercises regularly. Finding this group has possibly saved my life.

  • That was the consultant, he took an instant dislike to me. Wouldn't surprise me if he said it just to scare me. According to an older nurse he's just a nasty little man with too much power. Think I'll try to call the helpline tomorrow. I'll try to, but I will manage this week. Talking on the phone scares me, but I'll definitely make myself do it.

  • Oh dear Lucyannie. That's no way to treat a lady. I have found nothing but patience and kindness in Cambridgeshire, but that is no help to you. You have had the best advice - get in touch with blf. I would put my oar in and suggest you ask for a prescription for Carbocistine. This capsule gets to work on that horrid old gunge and helps to disperse it. I take it when I can feel my chest getting bogged down. Good luck. I do hope you soon get sorted. You have a lot of years ahead of you. One perk. You might find you qualify for a Blue Badge!!!!!

  • Thank you so much for all your advice and for caring enough to post to me, thank you. I followed up the advice and had a lengthy conversation with a respiratory nurse at the BLF, she was absolutely wonderful, she thinks I have Bronchiectasis and not COPD and has told me to ask my doctor for a CT Scan to clarify exactly what is wrong with me, I've tried to understand the difference between COPD and Bronchiectasis by reading online, I'd really welcome a simple explanation if anyone knows and would welcome your own experiences of this thing? still feeling very scared by it all though.

  • Hi! Lucyannie. Welcome! I've not been on here long but everyone is very friendly and will answer your questions if they can. My husband has Bronchiectasis along with IPF. The Drs seem to put up stumbling blocks whenever you see them. I learnt a long time ago that you have to fight for anything you want. Don't be afraid to ask them. i enjoy being on this site and have learned a lot.

  • Hi Lucyannie, I'm also new in this group and have got advice and reassurace in abundance from the group who are just lovely :) I'm pleased the BLF were able to help and i hope you're feeling more at ease with things. I've requested information packs from BLF too so maybe give that a try.

    Take care x

  • Hi again, after reading all your kind messages, I followed your advice and spoke to a nurse at the BLF, she's of the opinion that I have bronchiectasis not copd, she advised me to get a CT scan done, I saw my doctor this morning and stood up for myself saying what I needed, the doctor wants firstly to send off a sample of my sputum, then when the result is back she will refer me to the respiratory dept at the hospital, then it'll be up to the consultant as to whether or not I need a CT scan, I think this is going to take a long time :( she is also giving me a different inhaler to try, but she didn't know the name of it, so is going to ring me when she's sorted it, does this all sound like the same route other people have had to take?

  • Yes, unfortunately the route is called chaos! Really though it is good that your GP has listened and that you are getting help. It is a long road and patience is definitely a virtue - as long as you don't let them slip and slide out of what needs to be done. Good luck with it all. x

  • I can honestly say, I understand, I am 52 and have copd, because I knew some people that have lived with it for years

    and done quite well, I thought that would be my experience not so. I was always the healthy on in my family, my only vice, smoking, I thought I had a cold, time went by at the hospital and when I woke up and knew things the doctor came in and ask me who my lung doctor was, lung doctor, I thought I had a bad cold, long story short , copd, treatment was a procedure in the beginning where they went down into the lungs and flushed them, next was the nebu breating treatment, in hailer, later found I had sleep apnea, now here I am at 52 with a pharmacy on my counter, neb machine, sleep machine, three or four different in hailers staying in bed all the time, trips to e r shots of steriods it is also affecting my mental well being with depression, also sense I am a artist, I haven't been able to paint for hours like I use to so now I have some of those disposable mask, they help, and if I am going to glaze a canvas I go out side on a breezy day if someone is here and knows the right way to spray I will ask them to help me, just found out recently cleaning products make it worse,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,I quit smoking the day at the hospital I found out I had it, no patches no electric gizmos for me just a will to see my grand grow and walk down the isle my mom has copd but never smoked.......................it was suggested she may have been exposed to cotton dust in the mills, but she also picked cotton in the fields for years, but she is pretty much doing good with her copd , well as good as you can

    I ask about that, and was told because she never smoked and lead a clean lifestyle is why

  • hi lucyannie , i was diagnosed over 12 years ago , i constantly have a cough @ back of my throat , im on numerous inhalers and medication , u could try asking the doctor for mucodyne capsules , they are for the mucus build up and help break it up also help the cough a little bit , also i would tell the doctor how u feel about the way he wont see u , he has a duty of care to his patients ,

  • true,

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