HELP NEEDED AND ADVICE PLEASE

hi everyone, my name is Paul I am 54 years old and have been a heroin user for or since I was 25 I am now 54, my life has been in turmoil for so many years ime very embarrassed how smoking the evil drug ruined my life, ALSO my LUNG I am a single parent with a 14 year old boy whom I love so dearly. if it wasn't for him I no I would not be here once you read my short story for help. 4 years ago MY partner died age 30 after 11 years of bliss, just getn use to that then my Mother whom I was devoted to died aged 80 whom stood by me I was left from never leaving home to suddenly nowhere to live and bringing up a 10 year old boy with no help on my own, I any way I was given a house and sat in for the next 4 years depressed smoking my head of with the two people I loved taken away from me overnight within the first 18 months 3 years ago I got a nasty lung infection and I developed phumonia that scared my lung , I soon afterwards found it hard to breath without a build up of fluid forming everytime I cought. I have kept off drugs now for 4 years and doing well . my doctor told me in a passing conversation I had COPD like it meant nothing to him , no explanation or anything OH GOD I was devastated soon after I asked my doctor if I can have a lungoctomy I said as my boy has no other family and I am very healthy otherwise. Guess what he said " you have two chances NO CHANCE AND NO blo ey CHANCE . but I love my boy ime all he has CAN ANYONE PLEASE PLEASE HELP THIS MAN IN DISPAIR Ime sorry I took drugs I wish I could get the money to pay for it I cycle and really try hard to keep my lungs active if anyone can help PLEASE HELP MY boy has lost so much he is top at school maths everything I pay £50 per week bus fare to get him to school so I cant save for it please HELP paul Coleman LINCOLNSHIRE

LOVE YOU ALL

35 Replies

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  • Dear Paul.

    I was very touched by your story. Life has been hard on you and your son. Having loved ones taken away and so close in time is too much for anyone to bear.

    Your son sounds like the love of your life. You adore him and he sounds like a very bright boy with a wonderful future ahead. I am sure he is very happy to have his dad with him, supporting him and I am certain he supports you as well. It's just as well you are still here to be with him.

    As for your doctor, he doesn't sound very kind. Or perhaps I'm a bit naive. But it would seem to me there is a better way of communicating with patients. You do need as much support as you can get on the medical side of things since you will be needing it long term. Is there any way you could find a more caring consultant?

    I don't quite know how to help you Paul but I would say please be kind to yourself. Don't be hard on yourself. Whatever you have done in the past is finished now. None of us are angels and that's okay. Love yourself. And you will be able to love your son even more than you do now.

    Sending you all the best for 2017. Please keep us updated. Much love to you.

    Cas xx 🌸

  • Paul-I was heading to sleep but I saw your post and just felt compelled to reach out, although it will be a quick one for now.

    I think you need to see another doctor. The one you refer to seems quite harsh. Not sure you're a candidate for the procedure you want but, there are many treatments.

    We all have a past. And most go on to have children, it sounds like you are struggling and trying-that's the best we can all do.

    Take care, and try to be gentle on yourself

  • You're going to be OK! If you can, go see another doctor who will talk to you and tell you exactly what you need to do to keep going. People with COPD can live long, happy lives. Try not to despair. I'm sorry you didn't get better information but this site can help you, too. It's wonderful that you are drug free now - you should be very proud. Take heart and believe that you really are going to be OK!!!

  • I admire you so much for beating the evil heroin what an incredible achievement.

  • Hi Paul,

    Your post really touched me....you sound so desperate and afraid for your son.

    COPD doesn't mean a death sentence....If you have stopped smoking, get regular exercise and take the right treatment then you are doing the very best for your lungs and health.

    Yes you have made mistakes and so has everyone but you have put right your wrongs and you so dearly love and care for your son.

    You have had a lot of grief and I can understand that your afraid for your son but it doesn't have to be that way.

    We can support you on here and also hopefully you are under a chest physician regarding your COPD so that he/she can ensure that you have the best possible treatment,

    Regards

    HC

  • Morning Paul, welcome to HU. Tomorrow is a new day and a new year. During office hours you can phone the wonderful nurses at BLF on 03000 030 555 who can help and advise you.

    Everyone makes mistakes in life and well done for taking better care of yourself as that is the right thing to do. You have suffered such trauma in recent years and so has your dear son. All is not lost but you do need to find a good doctor who will take your health issues more seriously.

    I do wish you well and urge you to grab each day and enjoy it. One step at a time.

    Sending good wishes your way. Xxxxxx

  • I can't say it better than the replies you have received already. You have done really well to keep going and I am sure your son is proud of you too. I did wonder if you could get a bit more help? Has anyone checked to see if you are claiming all that you can? Perhaps there is a local voluntary agency you could ask? Your doctor leaves a lot to be desired .... Take care of yourself, your boy needs you.

  • Hello Paul - you have arrived at the right place for support and wonderful advice. Take heart, I was told that I had COPD in a similar fashion so I know the devastation that information can have but as someone else has pointed out, this does not have to be a death sentence if take good care of yourself. Have you had a spirometer test? If not, then there is no way you can be diagnosed with COPD. I starting smoking again for a few months after my beloved Mum died in Dec 2014 and ended up with pneumonia too. I gave up smoking straight away which is the best thing you can do for your health. Keep your chin up - keep as healthy and fit as you can and you will have many many years ahead of you. Best wishes - it's not easy to lose loved ones

  • Hello harvey, first of all I will add my admiration for the way that you are trying to pull your life together to that of the others.

    Actually, you do not really know that you have COPD. That was just an off the cuff remark made by your GP and typical, I'm afraid of the ignorance of many of them. The pneumonia could have damaged your lungs and left you with a condition called bronchiectasis. The fact that you have constant build up of fluid points to this. This is a manageable condition but different to COPD and GPs are hopeless at treating it. You really need a referral to a good chest consultant who will give you a diagnosis and then the proper treatment, whether it is COPD or bronchiectasis. They also tell your GP which treatment to give you. You will also be helped to learn how to manage your condition so that life is easier and whichever you have there are lots of us on here who live full lives with them and will be happy to help.

    So, don't waste any more time on your useless, uncaring doctor, See a different doctor and insist on a referral to a consultant. Bronchiectasis can only be diagnosed by ct scan so no GP can rule it out or in and it is important that you find out so that you can manage your life. Don't take no for an answer on the referral. It is your right.

    Congratulations on your progression so far and good luck. We feel for you and we are all here for you.

  • paul, why not write down the questions you need answers to. and take them with you to the gp (i found this helpful) Ask him to explain copd to you, what it means for your health, why he thinks you cant have the procedure and weather there is any extra support you may be entitled to. I think you should also ask about seeing a councillor, finding out you have an unexpected illness can be very shocking (i was overwhelmed when i got my diagnosis), and can lead to anxiety . It sound like you have been through so many struggles and still managed to raise a child, you should be really proud of yourself for that. but talking it out with someone could really help. Iv suffered with anxiety and its hard to see the light but you will get there, as we wiganer's say "ey lad keep gowing wi' ed down, tha wil be alreet" xx

  • Dont dispare, folk live with all sorts of conditions we just need to monitor and prevent the best we can.

    Working together with the COPD team would be a good idea and when your well swimming is good form of exercise.

    Knowing your triggers also helps.

    Positive thinking, and motivation my dear friend.

    Hope you keep well.

  • Hello Paul :), you've received some great responses and lots of great advice and I can't add to it but I wanted to say 'welcome' :), well done on how far you've come and the very best wishes for the future for you and your son :) x

  • Hi Paul your story has really tugged at my heart.. I admire you giving up drugs, must have been so hard. You are doing the right thing,exercise,a good diet willl all help. You can live a long life if you put your mind to it. As for your so called doctor, I think you certainly need a new one,who will give you the help you need. Also ask about Pulmonary Rehab. Please keep in touch,we can all support you, and try to stay positive. Happy new year to you and your son. God bless love Berny XXX 😊

  • Well done Paul on giving up the drugs, with COPD you may need to take other drugs like inhalers, but you can survive with good regimes to see your son grow up into a man himself. Time to start a new way of life and what better time than New Year. Maybe a change of medics might help too some can be quite opinionated about bad past habits, but the relevent word is past you are entitled to a fairer apppoach to your current situation as you have tried and succeeded in giving up Heroine, you now need help to support your son through sad times. This won't be easy but you will make it through, take care look after yourself and every best wish for a better new year for you and your son.

  • Hi Paul

    What a great start by sharing how you feel on here. This site is amazing and will help you no end.

    I am also in recovery from addiction some 22 years and stopped smoking almost 7 years ago. After i stopped smoking the nurse kindly said to me " what do you expect you have emphysema (copd) !! I was shocked just like you The nurse wasn't very good with her attitude of telling me.

    I realised although chronic we can carry on and live pretty normal lives. Like all the comments on here - sound advice and help is here.

    I too think that you could do with calling the staff on here and get more help. I take part in clinical trials and that has helped enormously to understand my condition.

    I do hope you keep on the site and try out the advise given

    God bless

  • well the nurse maybe wise in her words towards to you but dont take to heart because i do prefer to be told the truth as a wake up call (meaning to "be cruel to be kind" atttude ) then carry on with life to the full of it's allows you to do.

  • What a tough time you've had over the past few years but you're a fighter and a winner so you can deal with this too. As everyone has said, get a proper diagnosis to start with, keep up with the exercise and eat healthily. Is there any way you can get help with your son's bus fares? Ask any questions you want answers for, on here. There are a lot of knowledgeable folks on here who are really supportive.

    I live in Lincolnshire too but am lucky enough to have a good gp and a respiratory nurse in the (village) practice, they have been brilliant and have helped me put thing into perspective.

    I think the advice about writing questions down and taking your list to the gp is a great one as I forget everything once I get to the surgery and maybe your illness is mild and wouldn't need an op (hopefully).

    Take good care of yourself, and welcome to the site.

    Happy New Year to you and your son.

    p.s stay away from google, I scared myself stupid reading all that stuff x

  • First of all,what is a lungoctimy?Secondly copd isn't a terminal disease, was diagnosed eighteen years ago,I'm sixty now,and it's only now I'm getting bad symptoms of the disease,granted we are all different,but you won't die right away?Try to calm yourself down,maybe using heroin has left you feeling anxious,my son is an addict injecting the stuff and stealing and everything that goes along with addiction and he also has mental health problems,you can't take a drug like heroin for that amount of years without it having an effect on you're mental health.Maybe you're suffering anxiety now?Ask you're doctor for some help

  • Paul - I was an addict in the early 1970s but have been clean and sober since 1990. The heroin damaged my lungs. Luckily I had a decent consultant and GP and between them I have been able to live a very reasonable life. To give yourself a better chance of a better life I would suggest exercise. Start gently and slowly increase the length and strength of the exercising. I started with the pulmonary rehabilitation - see you your GP (your new GP!) and ask for information about PR. I was diagnosed over 10 years ago and originally given 5 yrs before I was to be in a wheelchair with an oxygen bottle. I am now over 70, exercise regularly and live a reasonable life. Paul, it can be done but you have to work at it as you have with staying clean. Best wishes. James

  • Hello Paul. Welcome and nice to meet you. You have had some good replies that I can't really add to apart from congratulations on getting off the heroin...and I hope you have given up smoking too. I am not sure what you mean by a 'lungoctomy', but if you mean lung transplant...that is only offered to people with very severe disease who meet certain strict health criteria...and the waiting list is long. If you are still able to go cycling and do most things, you are a long way off needing one. Keep looking after your lungs and yourself and you should be around for your son for many years. I hope the new year is good to you both. xx

  • Hi Paul, I bet you thought you were the only one on here with a tale to tell .... hard luck lovey there are folks from all walks of life on here and many like you who have come out the other side ... don't worry about your son he seems like he is doing grand and if he sees you doing well he will only bloom further ... it is what kids do ... I lost my son to the after-effects of many years heroin use so I pat you on the back love and hold that head up high !!! Do as the folk on here advise and you will be looking at a better January and don't forget to go see somebody about your finances, the school may well be able to help too so never be afraid to ask when it comes to your kids you are their everything.... Have a Happy New Year and look forward to lots of progress reports from you ... and your son ... BIG HUGS (((X)))

  • Paul,

    Pay attention to the advice you've been given here; it's what you contacted the group for..., so DO IT !!!

    Welcome to a more constructive life....

    Duncan

  • Paul, your doctor is an ass

    I agree with everything other members have said you need to see another doctor and insist they explain to you whats happening and ask for a referral to a consultant because as someone has already mentioned it could be bronchiectasis due to the pneumonia and suggest that to them

    ( bronchectasis is very different to bronchitis ))

    On Monday you can ring the BLF nurses who can help you this is there number 03000 030 555

    You clearly are a determined man so use that determination to get the right help now because the sad fact is a lot of doctors are useless

  • Hi Paul, welcome to the forum, your story moved me as you care so much for your son. Please do follow all the good advice above - from personal experience Id definitely recommend seeing a counsellor, a new and decent doctor would help - and I look forward to seeing more of you in 2017. Happy new year :) :)

  • Hi Harvey 21 02, firstly you should be very proud of yourself for kicking the habit, there is life with COPD but I think you need to change your doctor who was extremely unhelpful, it is a scary time for you and a lot of people on this site have had the same scary feeling initially,with the right care and medication there seems to be no reason why you can't live a pretty good life and be there for your son,you are doing right exercising but the trick is to not overdo it, you will find that you have to slow down and pace yourself, you don't say what medication you have been given or what your lung function results were? But don't be a stranger, there are many people here that have a vast amount of knowledge and can help you through this. Ask as many questions as you need to, someone will have the answer and we are all here to support you, when I was first diagnosed the help and advice I received from people here was invaluable.

    Take care

    T

  • Hello and Welcome Paul. I agree with others above - change your GP (if you go on line to NHS Choices website you can see reviews and scores for other GP practices in your area so that you can get a good idea of the good ones). Its easy to change - just go to new practice and fill in form - they will do the rest. Good luck Paul.

  • Hello Paul, allow me to welcome you to Hu, SC you have received some great responses. First and foremost you need to visit a pulmonary physician such as I did and after that all will fall in place he would definitely test your lung function and everything out to really see whether you have emphysema and COPD or whatever, stop stressing it's not a death sentence, as for scarring of your lungs my left lung is scarred also,I'm not on oxygen as of yet and the doctor told me after viewing the results of mycat scan( this was 4 months ago) he told me by the way my lungs look it was a wonder I wasn't on oxygen. I was diagnosed with COPD in June 2005 but I was having symptoms way before that and I am currently at the stage of moderate COPD, what you need to know is that it's a progressive disease as the lungs deteriorate in time however there's medication to be manageable, first you must stop smoking immediately and eat healthy exercise as much as possible to keep the lungs pumping and everything moving.... as for your War on Drugs well I went to through that drug scene 2 I use on and off for 25 years, completely sober for 16 years which means I can really feel your pain, but don't worry slow down take it easy take everything one day at a time by all means never overwhelm yourself and by all means you seem to be doing great you say you've been sober for 4 years, I see that one of your main priority is taking care of your son and that's absolutely great but first you need to take care of yourself so that you can properly care for your son and be there until he's grown. When my doctor told me I had COPD I had no idea what that meant( that was after the tests were confirmed) actually I want to the library and looked up everything on COPD purchase a book. And then I stayed on the internet and that was very informative..... today 61 years old, exercise as much as possible and I'm doing great..... I wish you luck God bless and by all means please keep me up to date.

  • First off - I can confirm that a lot of doctors are hopeless at treating lung problems unless it is one of their special interests; that does not excuse the attitude of the doctor you saw so go to someone else. Secondly you are asking for something specific, i.e a lung transplant as I read it - from your level of ability and activity I don't think you are anywhere near needing this so maybe that is what provoked the reaction from GP, but his failure to explain this to you is still inexscusable. Third, COPD is a convenient term to cover a multitude of respiratory disorders so don't let it scare you - most of us on here have it and provided we get the right treatment and eat healthily we can live more or less normal lives - it is not a death sentence.

    I am concerned that you are having to pay £50 p.w in bus fares for your very bright lad's schooling - please investigate the possibility of help with this; there are so many agencies who will give you advice and, if necessary approach the school Head who will at least point you in the right direction - if you don't ask you don't get.

    You are coping with grief and guilt as well as the lung condition, well put those where they belong - in the past. You have done something so remarkable in overcoming heroin addiction that I believe you can cope with any challenge. Go into the New Year knowing that you have friends here who are supporting you all the way and please let us know how things turn out. Don't hesitate to ask for advice, between us there's experience of a lot of different conditions and I've had more help from the wise heads on here than from my GP!

    I wish you and your boy so well in 2017 and I know that your Mum and his Mum are so proud of what you have achieved. God bless you Paul.

  • hello Paul,

    3 things to add to the many good replies you have already got.

    1. being a parent to your son will be a powerful motivator to really take care of yourself and be kind to your lungs so you will continue to be here as his dad for many years.

    2. a diagnosis of 'COPD' is a real spectrum of situations. It means simply that your lungs are not working at 100% of the expected power for your age and height. It could mean anything from 'they work at 75%' to they work at about 20% ( mine have been around 20% for years, and I have held down a job and get out and about). It is worth getting a spirometry reading (as one reply suggested) and related to this as showing just how much of your lungs are still working pretty well - you just may need to pace yourself a bit more, and inhalers if prescribed can help.

    3. Using any drug for a long while means our bodies get used to that extra 'help' to relax, and having come off the drug (which is a huge achievement) it takes quite a while to find out other ways that help us relax (eg some people find yoga or mindfulness can help). Meanwhile, having that tension in our muscles affects breathing anyway, so self management of COPD includes learning ways to relax the muscles around the airways and then we get the optimum use of our lungs. (Pulmonary rehab often helps with this).

    But meanwhile, just remember the 'feeling of smoking' especially the long slow breathing out - ie 'smoking without a cigarette' - and this can often be a way into relaxing the breathing and reducing the feeling of breathlessness.

    NB only in rare situations is surgery a treatment of choice in COPD)

    good luck - this is a new chapter, not a last chapter.

  • Hi I very much feel for you I to suffer fom COPD to also heart failure but I have good GP who check me regular and prescriped the medication I need.one thing I would do is change my GP unless your GP start to understand you and your problems they will just get worse I am 71 years or age and have had 2 heart attacks and now suffer with you complaint so keep strong for your son and seek a good GP as soon as possible.

  • Oh Paul, my heart goes out to you and your child. I know that life cause not only did I live it but so did my mother, but through the grace of God and his mercy, much prayer and faith I have been clean from drugs for 25yrs, and my mother even longer, so Paul stay strong in your recovery. Now is the time to give God control over your life, allow him to heal your wounds and direct your path. You first need to find a new doctor, one who has patience for his patients and more understanding to your situation, you are on the right track Paul by reaching out and seeking help, some of us are too proud for that. continue to reach out, don't give up, and seek God for victory. Be Blessed

  • You could go to a Breatheasy support group where you could meet other people with COPD. The following website gives more information blf.org.uk/support-for-you/... I don't have COPD (I have a different lung condition) but there are lots of people with COPD who are members of this group. I too think you should see a different doctor in yours doctors' practice, and you could ask to be referred to a Respiratory Consultant at your local hospital.

    I hope new year will be better for you and for your son.

  • I too Paul had a doctor like yours I came out of the surgery feeling defeated she told me straight away that a transplant was in the future. I then went back to my local doctor who looked at the results and told me that if I had seen her instead of her off spider she would not have sent me to her as she has no bedside manner, get another opinion Paul good luck

  • Happy New Year Paul to you and your son.

    In my opinion the first step is to get a proper diagnosis. Others have given you the phone number of the BLF nurses who can guide you in this process, try giving them a call. They are not judgemental so your past will not matter to them other than the potential effects on your body. They are there to help you, to explain things in simple terms because sometimes medical terms can be confusing and baffling for some people. Please don't assume or jump to conclusions at this stage, you will cause yourself unessessary anxiety.

    Many people have courageously opened up to you about their past lives and how they have moved on. For your son's sake, listen to their advice and keep moving forward. Life is like a roller coaster full of ups and downs, so is lung disease, you will need strength to cope with the undulating pathway ahead ... If you are diagnosed.

  • Hi Paul, I just wanted to welcome you to our site. What a moving story you have told us. The members have reached out to you with much compassion. What a wonderful group of people on here. Like family, they are, Paul. I can't really add much. I see no responses from you, which concerns me some.Wondering if you read them. Also if your boy and you are okay.Would love to hear from you. Hope 2017 is good to you both..Hugs..Ruby🌹🌸🌼

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