Devastated just been diagnosed

Hello Guys,

Well further to my previous post, I have just had the results of my CT, full lung function and I am absolutley devestated to be diganosed with both Emphasyma and Broch. I am only 35 years old and I really do not know what to do. The CT scan according to my consultant showed 25% damage to the top of each lung (although the text on the scan said moderate Emphasyma) it also stated moderate Brochn at the bottom of my Lungs. My FEV 1 was really good 100% but something else was not so good and I am not so sure what it was something about gas exchange ? which he said was 76% and he would only worry if this was around 60%. I also have Sinitiuts and have been booked in for an opeartion to clear an infection in my nose. I am waiting for the Antitrypin result. I cannot stop crying I have a wife and we were planning of having kids but now I am not sure about this, I do not want to leave here a widow. I gave up smoking as soon as I got sick 5 weeks ago now I walk 1 mile a day and run 1.5 miles after work. I generally feel ok. I work up the city in London and I am terrified of everyone that coughs on the underground. I feel I cannot plan anything for the future as effectively I do not have one, I am confused by the ct scan showing moderate but my Spirometry results showing I am Mild/moderate (who knows) I am in a real mess and really do not know what to do. I just wish I could have my life back and start again.

Thanks for listening

Kind Regards

Justin

copd

16 Replies

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  • Hello and welcome to the forum jayspurs. I'm in my 60's. I was diagnosed just over 3 years ago with very severe emphysema Stage 4. My FEV1 averages about 24%. I still work, drive, go shopping, in fact all the usual stuff, just a bit slower.

    You've done the right thing and given up smoking. The next thing is to keep active. My COPD hasn't got any worse since I was diagnosed and I doubt yours will, so lead an active life and try not to worry. Some people on here have had COPD for 20 and 30 years and are still going strong.

  • Hi Justin - This must be such a shock for you. I care for my husband who was diagnosed about 12 years ago - he has severe COPD, his FEV1% is 27% - the good news our youngest daughter is 13 and we still have a great quality of life. He still works full time, drives, shops (much better at that than me), we still go on holidays - life is great just a bit slower!

    The first thing I would advise is to ring the BLF helpline - speak to one of the nurses they will be able to help you put things into perspective and help you understanding the illness.

    Do not google - it will frighten you! Stopping smoking is the most important thing to prevent further damage and you have done that! Brilliant. AND keeping fit - you are doing that. Fantastic. My other advise would be to be proactive - use antibacterial gel to try to stop catching colds etc. At the first sign of a chest infection go to the Doctor - I am sure that some of the damage caused to my husband was because he thought he could get over the infections.

    The very best of luck - enjoy your life! Lots of love and kind thoughts, TAD xxx

  • Hi Justin, please do not despair, all is not lost. You have given up smoking and very well done to you for doing that, you have a wife and a future, with kids too if that is what you want. Please click on the red balloon and chat to a BLF nurse who can re-assure you and help you with any questions you may have. You seem to be doing all the right things so carry on with that. Look after yourself and stay as well as you possibly can.

    I am carer for my hubby Pete who has had sarcoidosis for over 20 years and copd for 4. He is 63 now and getting on with his life as best as he can.

    I do wish you well but please do look to the future.

    With best wishes to you and your wife. xxxxxxx

  • Hello Jayspurs,

    You're sounding very worried and confused so why don't you give us a call here on the Helpline 03000 030 555? We have nurses, advises and helpline officers to support you and your family and help you work through your thoughts and concerns.

    We are open 9-5pm Monday to Friday and we can call you back at a mutually convenient time.

    Best wishes,

    Biddy

  • Hi

    I did call first thing this morning and I am waiting for someone to call me back.

    Thank you for replying

    Regards

    Justin

  • Oh that's good Justin,

    Regards,

    Biddy

  • HI Justin I agree with what has been said. I have mild/moderate COPD and I too wish I could start again. I do know the one thing I regret most in my life is taking up smoking.

    I do know how you are feeling my love as it is terrifying to be told you have an irreversible disease especially at your age. Keep on with what you are doing and make sure you take all your meds religiously. The other thing is learn to take your lungs seriously. If you think there is a problem go straight to your doctor or hospital don't prevaricate and wait just in case it's nothing. They would far rather you went and there was no problem than not go if there is. Infection can further damage your lungs so you need to be proactive in nipping that in the bud.

    Ask your doctor or nurse for a rescue pack - this will contain steroids and antibiotics which you keep at home in case you can't get immediate medical attention at weekends etc.

    If you are proactive in your health there is no reason why you can't live a long and happy life. Don't let it rule you - you are in charge ok? Go ahead and have a family and be happy.

    Stay with us here as between us we have a fount of knowledge and are happy to share. This is also a very friendly and caring site and we will always do our best to help and support you. Take care. x

  • Hi Justin,

    Not much I can add to the wise and caring comments already given. Absolutely do not despair. I have tried to educate myself on this disease and from the little I know I have no idea why they would class you as "moderate" with an FEV1 of 100% and a DLCO of 76% I think I'm correct in saying that 76% is on the light side of "mild" and 100% well thats brilliant. My FEV1 is 95% so I was at a loss as to why a consultant recently told me I was "moderate" till I realised my 47% dlco wasn't great and my Lung Volumes were way over predicted. He didnt seem overly concerned with the DLCO result but pointed to the "moderate" due to the LV. He also told me this wouldnt affect my "lifespan" but would eventually probably impact my quality of life. For now I'm on the go all the time and I doubt acquaintences knows I have copd. I wouldnt have known either had I not needed a CT scan for other reasons. I'm blessed so far in that the mechanics of my airways are very good. I only think about having a problem when I run out of puff on inclines.

    You have done yourself the biggest favour by quitting smoking. Never ever touch them again! Surely with your results any progression would simply be expected age related. Be kind to yourself. Eat good food. Have a flu shot each year. Make exercise a part of your life forever. Don't change the plans you had made for yourself and your future family. Fear is a terrible thing I'm sure each of us here have experienced it to some degree. Let it go. xx

  • Oh Jayspurs I can feel your panic. Do try not to panic. there are nurses on here that can help if you contact them...there are people like you on here that will tell you all about ourselves and do know once you come to terms with everything, get as much help and advice as you can, you will have a long long time to enjoy your life with your wife and children ...... keep coming on this site....I send you my very best wishes :) I will keep watching out for your posts to see how you get on . WELL DONE FOR GIVING UP SMOKING !!!!! :) :) :)

  • Justin,

    You DO have your life to start over again; you've just received a 'warning' about what you need to do to straighten out and get on the 'good foot'.

    Keep the ciggies outta your life, continue with the exercise and live a long and healthy life; at mid-30s with the readings you quoted, you're in pretty decent shape, so just get rid and stay rid of the nasty habits.

    Boogie !!!

  • Hi Everyone

    Thank you all for your kind responses. I am trying to gtet my head round all of this and still cannot believe what I have done to myself. I try and take faith in all the words that you have said but it niggles at the back of my mind that if I have 25% of both lungs gone plus bronchiectasis in the bottom how long my lungs will hold out if I am 35 now ???. I really do not want to be at a stage where I am on oxygen at 45 or 50 for that matter that is no way to live and I would not want my wife to have to give up her life to look after me. She deserves to have and find a better life than that. Each night I wake and in between coughing i just lie there and think about the things that could have been and now are just not possible. I really want to believe you all that I can have a long and happy life, but I am not convinced although I will try everything in power to stay well. I feel so lost and alone, I am sorry to rant as I know you all have your own problems and journeys to take. It just seems the more I read that its the luck of the draw on how long you can last with any decent life at all.

    Thanks for listening

    Justin

  • It's terrifying isn't it...........how on earth are you ever going to get your head around it......BUT.....you will....just give it time & take each day as it comes. Talk to your wife..talk to the amazing nurses on the BLF helpline......& keep posting on this website because the people on here are amazing & will help you to get your thoughts straight. Ten months ago I was where you are at now & honestly things will start to make sense & you can live a long & amazing life.

  • Hi jayspurs

    So sorry to hear of your diagnosis. All is not lost. Just to let you know that I was diagnosed with Bronchiectasis when I was ten years old and had half of each of my lungs removed when I was thirteen. I am seventy one years young now and have lived a very active life, skiing, hillwalking etc and have lived all over the world. I did not let my illness stop me doing anything. Unfortunately, I have slowed down now, but still walk one to two miles a day.

    When You get over the shock of the diagnosis, live your life to the full, have a family and be kind to yourself.

    Keep well

    Tamara

  • I was exactly where you're at the moment 4 months back when I heard I've got mild COPD (stopped smoking immediately - I even got anxiety attacks and gasped for air (Which never happened before lol) I cried, couldn't sleep and blamed myself - was angry with myself and hopping mad that I ever touched the rubbish. Then I realized that if I take a walk with the dog up the hill and back (about a mile uphill) I get out of breath a little bit but by the time I get back home I was breathing normally. That's when I realized I was loosing it in my head and that yes I had a medical condition but so has 90% of the worlds population with some or other illness.

    I then started to talk to people on here as we do not have all the help you guys got, here in South Africa. They gave me hope and tremendous good advice. One of the people that I spoke to at home was a friend of mine who takes care of about 13 clinics at mines across the country. He told me that a big percentage of miners (Deep mining) develops COPD. They then usually give them either a job above ground or tell them to move on to a new career. They however keeps on to monitor these guys and found that the moment the danger factors are removed, (in your case the smoking) these miners carry on with life as normal and age like anybody else. He actually laughed at me and gave me anxiety pills - which by the way I don't need any more.

    So what I'm trying to tell you - get on with life and fight your fear as the fear will kill you not the COPD. Confront your Goliath (Fear was mine) by picking up your 5 stones of strengths. If it is loving your wife love her with everything you've got - If its singing or praying or worshipping or running or gardening or whatever your strengths are - pick up those stones and kill the stupid goliath.

    So give me a call when you 80 years old and playing with your grandchildren. Even I may still be here - lol I'm 57 now. And lastly listen to the advice of the people here - they know what they talking about - some of them has got COPD for longer than your age in years - hows that for hope?

  • Brilliant Message, absolutely fantastic. Have a wonderful Christmas Pietba

  • HI Pietba

    What a great message and reply to jayspurs you have even made me feel good about myself reading this lol

    Good luck

    Merry Cristmas

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