Help? What Help??

I was diagnosed as having emphysema/COPD. (don't know what the difference is between them so not certain which one to use!!)

That was about 4-5 maybe more years ago. I was give a spiro-?????? Test and then got some inhalers to puff on. As I still smoke it felt wrong to use the inhalers so I stopped using them, told GP why and they were then taken off my repeat script.

After about two years I was called in to have another spiro-thingy. Since then? Nothing!!!!

No Respiratory nurse.

No COPD team.

No medications/tablets.

Just the ventolin for me to use when I'm struggling to breathe. (Which it either helps or it doesn't). I'm once again on antibiotics for yet another chest infection as well as a bunch of steroids that have always been given at the same time.

So what should I be getting and who should I mention this to? Can anybody help, please??

17 Replies

  • Hi and welcome.

    First the nagging, stop smoking! It is the greatest thing you can do to help yourself (nagging now over). emphysema comes under the umbrella diagnosis of copd so both terms are right. Have you been back to your gp recently to discuss this? I would go back and discuss your concerns and ask what support they can offer. It's possible that because you said you weren't using your inhalers they considered that you were declining treatment. You may need a preventer as well as the ventolin but as I don't have emphysema I'm not sure that's the case.

    Do you know what level you are? I'd ask about pulmonary rehab which can help you with exercise and education. I've not had it but everyone on here who has found it of benefit.

    With copd it appears that we sometimes have to be proactive in getting help so it might be useful to write a list of questions and take them with you to the doctors.

    Exercise and healthy eating can help slow down the progress of copd so that's a good starting point. Other than anti biotics and steroids when we have chest infections I don't think there is any medication but again I'm no expert and someone will be on who has a lot more info than me.

    I know it's frustrating but be patient and if you have any questions ask away some one will have an answer.

    You've come to the right place, these guys have helped me over the past year and are so supportive.

    Take care

    Shelagh x

  • Hi & welcome to our forum. You've had excellent advice from Shelagh.

    I would reinforce the advice about smoking. You must stop if you want to help yourself. Not easy but it can be done. Speak to your GP or pharmacist who can give you advice or meds to help you stop.

    I would expect you to have been given a preventer inhaler or two, plus a reliever one. You may benefit from starting back on the inhalers.

    A healthy diet, exercise, no smoking is the way forward.

    Keep in touch & let us know how you get on 💐

  • Hi copd is the umbrella term for both emphysema and chronic bronchitis. Some people put asthma under it too. Most people have primarily one or the other with a bit of the other thrown in as well. I don't know which I have got as my doctors/nurse insist it's just copd. I don't think they know (or care).

    It is good advice from the others re smoking but it is silly to beat yourself up over it and stop taking the inhalers. You are obviously finding it hard to manage without them and there is no reason why you should.

    You need to go back to your doctors and get put back on your inhalers. It sounds like you need a preventer as well as the reliever inhaler which you are using. You should also get a copd review at least once a year with a respiratory trained nurse. x

  • Hi, i wouldn't have given up the inhalers; if you need them you need them regardless of whether or not you are smoking, you are still entitled to them! But it appears you still have the ventolin? At least you are honest re still smoking; Smoking is one of the hardest addictions to beat in my opinion! I still smoke, but vape too, but my partner has COPD, my mum died due to smoking and my dad got cancer due to smoking! So, i must try alot harder, its such a nasty addiction, but i do understand how hard it is to stop! However, my partner has managed to stop. He was told yesterday that the copd should stablise, but that if he were to start smoking again and continue smoking, within 5 years he would be in a wheelchair and on oxygen! So, get back to the GP ; get the support you need re your copd and get support re quitting. The electronic cigarettes i have found make it the easiest re quitting (though dont know if they are advisable for someone with copd?)

  • I use an e cig and the nurse is ok about it :)

  • Try and go back to your dr ask them for help with the cigarettes ask to be referred to lung dr

  • Hi, Dizzy Rose. Others have given you a lot of good advice, which I won't repeat, just add to. Try to avoid getting coughs, colds and other infections by avoiding people who have them, using products like Vick's First Defence and NasalGuard's Cold anf Flu Block, washing your hands frequently, not touching your face and especially your eyes with your hands, and using hand sanitiser and gloves when out and about. All the best, M.

  • Great advice and information there DizzyRose and can't really add to that. Wishing you well. Xxxx

  • The reason they are refusing to help out is the fact your still smoking, I was diagnosed with a genetic condition back in 2007, aged 45, AATD Alpha One Antitrypsin Deficiency I never heard of it, buried my head in the sand and by the time I reached 47 I was given a max of 2 yrs left to live, I have emphysema I continued to smoke and effectively was left to die, you need and have to quit if you want to live, its that simple. Emphysema is a killer disease and takes you very slowly, so loads of suffering for the bulk of folk in my case a decade, I quit started to walk and continue to live a life of sorts far removed from the one I did live before this beast got me I can assure you, I was housebound for those early years, unable to walk, breathe mostly and continued like a lot of people to smoke, believing this would go, I am 55 now looking at LVRS because my lungs are so huge they sit in my gut, I cant bend I have low energy and I get by, I enjoy my life so much from where I was back in those early days of puffing away I can assure you and the difference it played in my 'come back' was alike being 're born' but my condition is progressive and incurable so in time i will need a lung transplant doing brill though and defining the odds at present through walking daily, eating well, avoiding every toxin out there and breathing great clean coastal air, I survived this many do not..please stop asap, this is not fun, its long and hard and lots of regrets I never stopped sooner. I went on e cig to quit I was a heavy smoker and enjoyed them and totally addicted so understand you completely but it will kill you young. Sorry to be this frank but it is the truth. I was at 22% fev they list you for a tx at that level I had no oxygen offered nothing only like you inhalers, so if you don't do the work they will leave you that way, remember to this is not a quick death its long and lingering and totally draining in every sense of it, I would seek help in quitting your chances are good if you do this and take up exercise like me, I came back from the dead, and I live well to day but the damage is firmly done...good luck!

  • That must have been a tough post to write but I so admire your honesty hopefully it will help others reading it. xxx

  • I think you will find Dizzyrose is using the ecig and is doing well on it.

  • I only stopped smoking 2 years ago dx with COPD in 2006. And have never had problems with treatment. The thing doctors forget is that it not only smokers who can get COPD non smokers can get it. Smokers should not be punished as not all smoker get it just the unlucky ones get it me included. But as they say life goes on even in the slow lane.

  • It is a total disgrace that because you smoke you are being denied treatment - or did you perhaps imply that you did not want inhalers? I was diagnosed with asthma in 2002 and went on smoking until 2010 when I was able to quit overnight with an e-cig. During that 8 years I was prescribed Seretide and Atrovent and the multitude of antibiotics and steroids for the far too frequent infections. Of course I was lectured by the doctor, nurse etc. but never for one moment did they even mention withdrawing treatment. Please try everything to stop the ciggies otherwise your condition will continue to deteriorate - I am now on far fewer meds and virtually no infections - but go back to doctor and get all the help you can. You are entitled to the same treatment as everyone else.

  • Hello DizzyRose,

    I'm a bit late. Sorry. I thought you were new here but you've posted before. Remember - I sent you some flowers 💐? And you told us all about your pets and how they're such good fiends.

    It was also clear that you have a lot of problems but you are trying. A picture of your ecig! And your plan for cutting right down on the cigs.

    You must have been in touch with someone to get antibiotics and steroids and they'll be pleased that you're trying to stop. Have you told them?

    Do speak to your GP or the nurse, DizzyRose. They're the ones who can do things to help you, but you can always come here for whatever you feel like talking about.

    I do hope you get over this infection soon. Don't forget we're planning a party! 🎈🎈🎈

    Take care. Speak to your doctor. Please.

    Love Sue x❤️️💕 🐱

  • Thanks, it wasn't hard writing it but very hard living it! Nottobad I realise that , my condition as I outlined in the above post was referencing my 'genetically inherited condition' so no smoking was not the out and out cause, but it triggered what I was born with 2 faulty genes which is how alpha comes about's the only way, you are born with a defect gene one from Mum and one from Dad, I was super fit until I hit 44 by 45 I could not breathe no problems whatsoever my whole life, so its a 'out the blue' I was floored and very , very sick. I am lucky to be here and alive, our disease is akin or a sister disease to CF. Expect rarely do you present problems until your 3rd or 4th decade, my case symptoms of breathlessness hit me aged 44, officially diagnosed 46. The refuse to birth test aatd why? no idea, this is not a rare disease but 'rarely diagnosed one' which is why I urge everyone presenting problems any problems with breathing to get a test done for alpha. Its vital and most probably will save your life. I did have inhalers available to me during those traumatic years but they refused me oxygen, I clearly needed something ..I saw a COPD nurse during that period who knew nothing on alpha one, and i refused to go back and see her again. She refused me oxygen because she did not know her job!! I saw the Consultant not long afterward we did the 6 min walk I was de sating to under 80! ..she should of been fired. I was put on supplementary oxy after asking for it nearly 2 yrs. I really hope this helps a lot of folks out there scared, confused and not getting the proper care they need, look to a Specialist talk to them and ask for referrals if your not happy and switch care if you need to as well, I learned a huge amount over 9 yrs of living with alpha one and thankfully we have expert centre;s here only 2 I have to travel 280 miles for my care I have a local I see for monitoring me, but specialist is once a year due to the travel. Its not easy any of it, and we are still denied replacement therapy here in UK which is frankly a appalling state of affairs whilst the rest of Europe receives it. We fight , I learned a huge amount about fighting with alpha one, so please do yourselves the best favor you can, eat well, watch your weight, quit the toxins, walk daily will survive and live the best life your able, but please quit the smokes .. they will kill you.

  • Hi flo1 it really gets to me that we all are treated differently. I am so sorry for the way you have been treated. I was the only one in my family that smoked. I now have 2 autoimmune disorders witch dosnt help my COPD as when I have to go on antibiotics I have to come off my medication for psoriatic arthritis and psoriasis as they are immunesupressants. I have a follow up apointment with my consultant on Wednesday as I am recovering from pneumonia and a bug at the moment had to start antibiotics yesterday when my sputum came back showing a bug. I will ask about that test.

  • Hi , I was the same with smoking and the more everyone got on at me the more I smoked , I was told by consultant that I wouldn't see 40 if I didn't stop smoking over the years I did try lots of different types of ways of stopping hypnotherapy , different nicotine substitutes but I really didn't want to stop so I wasted lots of money , eventually when everyone stopped getting on at me for smoking ,

    I stopped but for myself not be cause I was in and out of hospital or doctor or family were getting on at me but because I finally wanted to . with the help of nicorette quick mist spray I finally stopped , it didn't cure my breathing problems and I am also now on oxygen so it's different for everyone but one thing at least now when I have problems with my breathing it's not just dismissed because I smoke ,

    People treat you different when you smoke and now I look back and can't believe how stupid I was to even start smoking as i have had asthma since i was 4 year old but hindsight is a great thing.

    You will need to speek to your gp or respiratory nurse even though you smoke you still need treatment and if you do go to a smoking sensation group for help were you can try alot of different ways to stop smoking then that's up to you good luck , but get help for your breathing the medication can't help if you don't take it .

    Goodluck hope that you get better advice and support from your Gp

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