Too young for this surely?

Hello anyone who may be there. I'm 32 and was diagnosed with copd a couple months ago. My fev1 thing was 69%. I swear in 2 months ive thought about this from morning til night. How long have I got? 5yrs? 25 yrs? Ive gone from 40 a day to 3 or 4 a day. Anyone help me out here? 3 young kids I was kinda hoping to see grow up... many thanks anyone who can enlighten me on whether say age 50 is out the question now??..

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  • Hi

    I am 67 still going strong ish.

    Have a read of a post by a fellow member. TADAW

    healthunlocked.com/blf/post...

  • Hi evo1804

    If you pack the smokes in quickly and keep as active as you can with fev1% of 69% you can aim to live a long a happy life. Do phone the BLF helpline for an information pack, lines open Monday-Friday 10am to 5pm, (click on red balloon top right for contact details).

    When you see the doc or consultant next ask to have the alpha1 blood test, the helpline will advise you on this further.

    Take extra good care of yourself.

    Best wishes BC

  • The other members are right and do read TADAW's post, my hubby was diagnosed in 2001, he immediately gave up smoking and with the right medication and exercise, eating nutritious food instead of the rubbish he would prefer he is doing good. Yes we have our blips but who is going to win the disease or us. Take care and good luck.

  • I think today must be the start of your new life, if you manged to go from 40 a day to 3 then now is the time to stop it completely you don't need the 3 either even if you think you do try to stop those last 3 a day and you have done so well in stopping this so far, then work on getting fit, try the gym it will help to get fitness levels up also eating well and looking after yourself for your children who need you. Its hard to stop it completely but it will help you. Also talk to BLF advise line they are very good.. x

  • Hello Evo

    Greg from OZ here.

    It is somewhat unusual for someone your age to have been diagnosed with this disease from smoking related causes. Usually it is something that is diagnosed in smokers in their fifties or sixties after 20 - 40 years of smoking.

    Having said that, a FEV1 measurement of 69% is less than desirable, but I have found out in my [limited] journey with this disease that FEV and FEV1/FVC measurements change, depending on so many factors it is impossible to set them out here.

    If you truly want some advice on how to address your condition, and live to 60 or 70 or more and see your kids and grandkids grow up, then this is it:

    ..

    YOU MUST STOP SMOKING. COMPLETELY.

    Honestly, Evo, for someone your age it is as simple as that. If you can do that, most of the rest of your lung problems will just fall away and you will almost certainly live a long and normal life. If you continue to smoke however, until you are in your 40's or 50's, you might not have this opportunity.

    I am not sure what else to say about this. At your age you have an opportunity to divert the course of this disease. It is up to you what you do with this after this point I suppose.

    Regards

    Greg - Melbourne OZ

  • Harsh advice Greg but spot on, it's the Aussie way to tell it as it is!

  • If you quit smoking and exercise daily you'll live a normal life . Your lungs need years and years to clear up. By smoking 3 a day , you're not giving them a proper chance to do so. You've used up your lung reserves! Some people smoke till they're 80 and have no problems and some of us are diagnosed with emphysema at 40. I smoked 30-40 cigarettes a day for 26 years and quit, cold turkey. It will we be hard at the start (first 3 months especially) but you'll get over it eventually (in my case it took two and a half years). I used to chew a lot of gum and carried worry beads with me to keep my hands busy distract me from thinking about smoking.

    Nobody was born smoking, its a habit we acquired and we can get to use to life without it. So chill :)

    Being diagnosed COPD is not a death sentence .

    With proper care most people with COPD will wave goodbye to this world with their COPD and not because of it.

  • Hello evo1804, sorry you are going through this. My first thought was possibility of Alpha 1 deficiency as Blakey has suggested above. This BLF link will give you information about this condition which can cause copd in younger (and older) people.

    blf.org.uk/conditions/detai...

    It is imperative as everyone says to stop your remaining few cigs right now. (Just edited as i had misread your post.)

    There is lots you can do to keep yourself as healthy as possible - it will be important to keep away from people who do smoke, to avoid infectious/contagious people, and environmental pollutants as far as possible, plus all the things in Tadaw's post which Stone has posted above.

    Do come back here with more questions any time.

    Take care :)

  • Hi I know how you feel, I was diagnosed in oct 2013 and im 22. Ive also never smoked. I have a blog if you would like to read it xx

  • you were diagnosed when you were 22 and never smoked well that does make one think now l have been saying it is iredotroy and people are quick to say its not maybe l could be right after all if you have anyone else in your family that has had it good luck anyway just goes to show you don't have to be 50 to get copd

  • i have a long history of lung problems and i always have been a medical mystery. we havent got much contact with one side of my family to know if it does run in the family but one of my grandads died of heart problems just before i was born and he was only 40 so could be a link. i was very shocked and upset when i got my diagnose i like you felt like i was too young and this could be the end of life as i know it. i was a champion ballroom dancer, gymnast and i have a job in child care which i love. have a look at my blog

    mylungsandme.blogspot.com/

    I am hoping to show young people with COPD they arent alone, which is how i felt when i was diagnosed.

    good luck xx

  • Interesting blog Marti,goodness you have been through the mill,& you're only a young un!!

    ,Do keep positive,& the best of luck with your teacher training,I'm sure you will do very well,keep up your other interests too,as that is one of the keys to staying mentally healthy! Wishing you the best of everything,breathe easy!

    Love Wendells xxx

  • Im 38 and was diagnosed march

    2013 with a genetic defuency which ive got fron ny parents calll alpha 1 antitrypcin defincency ask about a blood test for it x

  • alpha-1-antitrypsin deficiency (A1AD) is hereditary - not COPD Minkymoo - just in case there are people reading who might think it's ok to smoke if you're going to get ill anyway :)

  • hi well you tell me how my dad and my two sisters never smoked but all three have c.o.p.d l have it and yes l smoked but it was only for 3yrs and l stopped

  • Have you all had the test for the above A1AD?

    There is a link in O2Trees reply above that explains it.

    I'm thinking of having the test because like you, I've hardly smoked so if I have the deficiency it might be helpful for my kids to know and give them the best chances/choices for their future lung health.

    All the best to you and your family. P

  • I was diagnosed with bronchiectasis at 32 an have 2 young children. I gave up smoking 10 yes ago luckily. Since being diagnosed I haven't been so ill, with the right medication and support things are better than pre-diagnosis. Don't give up yet. It also made me aware how precious life is. X

  • I'm 73 ,aiming for 93

  • Great attitude Whit. :)

  • mine is not from smoking my own but in life i have had to live in other peoples smoke, at 75 i have 32% dont think in all my life i have ever had more than 50% it is how you live with it, keep active, so many chesty people just sit around on back sides doing nothing and wonder why they can breath, as much exercise as you can, push your lungs to the max and then some, feeling sorry siting at home only makes it worse, keep up with your kids, dont let them beat you at anything, bike walk run even if you think you can't, i can on 32% so i am sure you can,

    get rid of fags and think of others you are inflicting it on like me, i had dad and 4 siblings all smoking in my home, the room was blue with smoke all day. racey.

  • I was told last year and I'm 29. I think I'm going to go on for years to come even tho have lots of other conditions to go along with one

  • eve just seen your post please get tested for alpha one antitrypsin deficiency, it sounds to me like they have misdiagnosed you and trust me they do this quite a lot, your only young and they are supposed to test for A1AD with anyone showing symptons of copd /emphysema on the younger end of the scale, please go back ask for a referral asap to your specialist and get the test done, it is a simple finger prick test they can tell you whether you have it or not in a few weeks. I was diagnosed at 46, after a year of being told I had developed emphsema, which was a joke!! You need to then get referred to a alpha one specialist here in the UK the specailists here should advise you on this, if they are unable and you are indeed positive I can recommend a couple to you, there is no cure as yet but alpha one is a whole new ball game to copd as it is genetically inherited so you are carrying to faulty genes passed down directly by your mum and dad, it is a serious condition and one that needs expertise , many C onsultants will be unable to help you so it is essential your in the right hands....Good luck, also I have to advise you to quit the cigs NOW! alpha one are unable to regain lung function which is precious when it gets destroyed and it gets destroyed very quickly with cigs, I wish you luck , any further help call out and if I am able will try my hardest to help you. alpha-1foundation.org/ there are many groups in the UK but hopefully this is the one that will give you all the info for now you need, we run a support group on facebook alpha one advocacy and action group , also the uk support group for alpha one should you have A1AD, I hope for you hun and if you need further halp I am sure there will be more here able to offer you some, please try not to stress I know it is hard but with these diseases they are managable if you follow the rules and you will live to see those kids grow up !

  • Hi Flo 1 just read your response ..may i ask would this test be autimatically done via bloods etc or would it need to be asked for? Im concerned that having been treated for adult asthma this might not ever have been considered. My daughter is also very badly with chest since birth . Im hoping if i get a proper diagnosis it will help her as well . Thank you for posting take care judith x

  • I had to ask.

  • I have had asthma since the age of 2 and was diagnosed with Alpha 1 at the age of 52. as with all things in very rare cases they my do something about the deficiency but for most they do nothing just treat the effects it causes. Although this was discovered back in the 60 s i don't believe they understand it yet other than it is known to affect the liver at a young age or the lungs. the general affect is that your lungs are not protected in the same way and emphasimia is generally the result.

  • Hi and welcome, best advice on here as usual!

    Stop the fags, eat well and get out of breath, on purpose at least once a day.

    I've had COPD for twenty years and at 66 years young I'm hoping for another twenty!!

    Take the advice on here and DONT Google it cos it will scare the pants off you, just ask what you want on here and use the BLF Helpline. You could see if there's a Breathe Easy Group near you to join and talk to other people about how they live with it.

    Welcome again and yes, if you're careful you will probably see your Grandchildren grow up x

  • Oh sweetheart, you have my sympathy; I was diagnosed at 29, it's a blow but look upon it as a blessing. You have the opportunity to educate yourself about your condition, manage your health, keep fit, eat well and above all ditch the fags and there's no reason why, by the age of 45 you will be fitter than your more debauched contemporaries with many years ahead of you. Alternatively you can bury your head in the sand as I did, now 47, housebound and health in ruins.

    My babies are grown, my body is 90 but my mind hasn't suffered, oxygen saturation permitting! COPD (in my case emphysema), is not a death sentence but a condition to be managed, I gave in to my fatalism and I was wrong.

    While 29, or 32 may appear young, I am of the opinion that most sufferers dismiss early symptoms as a smokers cough only to be diagnosed in their 40's and 50's as my smoking friends are now discovering. If they do go to the GP it is usually attributed to a late onset of asthma, for smokers I think that's usually cobblers.

    I will finish here, just one piece of advice and it's not comfortable so I apologise if it's upsetting. Not only is it vital for your health and life expectancy that you stop smoking now, today, this week, while the shock is new and your motivation high because you'd be amazed what you can get used to and what you will smoke thru (I still regularly fall off the wagon). But your children are far more likely to smoke if you continue. I don't believe that keeping it away from them will help.

    I can remember the comforting scent of my mothers hands as a child and the realisation, around the age of fifteen that it was cigarettes when my hands smelt the same, I think I identified it with safety and security ironically enough. Anyway my 21 year old daughter, despite having grown up seeing the horrors that I have inflicted on myself, was smoking by 14 and already is suffering with far more respiratory problems than her peers. Since we buried my mother last year, (COPD, aged 76 but with a very little quality of life, the real tragedy is that) she is finally considering quitting. My son is allergic to tobacco thank god, it may be only that which has spared him.

    I am so very sorry if I've upset you but in a way the news is good, it's not too late, it's never too late. Fear is a great motivator, chuck it all at the fags and look forward to seeing your grandchildren!

  • Hi Evo

    I have been diagnosed with COPD many years(20s to 30s) ago I have been on a nebuliser twice a day since 1999 I am now 54 still doing most things I always did a bit slower at times not able to dance the evening away but can do one dance and then take half an hour to recover! I still work but only 20 hoursa week I have gradually reduced my hours over the past few years.

    I think the key is to keep active not to worry too much about it eat healthily dont drink too much alcohol but other than that make the most of life with your children. kind regards Irene

  • Smoking Cigs and Weed are big causes of COPD, giving them up can change your lungs so quickly. I gave up in 1992 and I was a 40 a day smoker. Do not stress yourself over it but work to get your lungs back as best they can.

    Be Well

  • hi kid, read what I wrote to ....flowers89, hope it helps. love the brits.

  • Hi

    Very to hear you have got copd if you can give up smoking it will help

    it wont cure copd but will make you feel a lot better I am doing the same

    I used to smoke 50-60 roll your cigs and I have given up and vape occasionaly

    as I have found that vaping is a lot better than smoking for COPD.

    I wish the very best of luck and look forward to hearing from you.

    Bobby

  • Thank you all for your kind posts. Its been kinda emotional readin through everybody's stories and I truly appreciate everyones input. One guy even sends his advice from Melbourne Australia! To me thats a little mind blowing!.. so thank you everyone. I have finally found the kind of advice ive been trawling the net for weeks looking for; real advice from real people who are going through the same. And you know what its kinda refreshing and has definitely made me feel much better and much more positive about this whole thing. Terms like ‘irreversible‘ and ‘progressive‘ have honestly struck the fear of God into me lately,( I even had a dream about my kids watching me suffocate), but you lot have made me see its not a death sentence. And I thank you all so much for that. And to Mr offcut; maybe your psychic but strange u mentioned cannabis when I didn't. I smoked cannabis heavily from age 12 to late 20s, I didn't mention it before because I didn't wanna sound like a junkie and put people off. (I'm a professional tradesman with plenty qualifications) but yeah does anybody else have any views about cannabis and copd? Peace everbody

  • Hmmm, maybe yes, like yourself, if I had've been a hash smoker for over 30 years I too would be reluctant to own up lest it cloud the issue, hypothetically speaking of course. But if I had I would now be of the opinion that it is very bad. I have read research that cannabis can act as a bronchiodilator (pardon my spelling) and as such can be helpful for asthmatics, but even my hypothetical self, eager to exhonerate her chosen vice, knows wishful thinking when she sees it.

    Smoke is bad, tobacco, weed, bonfires, incense, all bad and two wrongs don't make a right. You only have to look at what collects in a bong (water pipe for smoking marijuana for those not in the know). Even my hypothetical self didn't indulge in those, but many misguided stoners believe that it is a healthier option being tobacco free. The oil which collects is every bit as tarry and noxious as the precipitates of tobacco; irritant, clogging and no doubt highly carcinogenic.

    So while I believe that cannabis is of value both as a recreational alternative to alcohol and therapeutically, for pain relief and many other medical applications I have yet to come across any credible evidence that the benefits of smoking it outweigh the risks. Comparisons of tar yield that i have come across have borne out the assertion that joints are worse than cigarettes, hardly likely to be better given that they are primarily composed of tobacco.

    On a more personal level I regret having taken up any kind of burning weed, hypothetical or otherwise and had I been a cannabis smoker I would then have two addictions to fight and two pleasures to miss.

  • Kinda feel ya, kinda don't understand some of your vocab there, you must be some clever cookie, unfortunately I'm pretty much limited to plain English. I think you may feel I was asking about cannabis as a medicine for copd? Just for the record thats not the case, I was actually wondering whether my use of cannabis has led to this early diagnosis of copd. Obviously I know it probably has I just wondered if anyone else was in the same boat. Peace

  • Hiya Evo, excuse my waffle, often struggle to understand myself! I assumed you were wondering whether cannabis may have contributed to your COPD, something I think about myself.

    After some initial hesitation I've 'fessed up to my medics about what I put in my rizla's over the years and surprisingly I have never been told it was a particular problem over and above the tobacco. However I have found some evidence about the higher tar yield which in effect means that the smoke from a joint is equivalent to a stronger tobacco. For example, from your lungs point of view, rolling with cutters choice effectively becomes like smoking old holborn with the addition of weed.

    It's really a question of how fatalistic you are, I think that if I could jump in a time machine the only thing that would probably have saved me from this horrid condition is not smoking at all. Had I just smoked cigarettes or confined myself to a moderate daily cannabis habit I think the outcome would be much the same; COPD. Of course one can never know; my mum never smoked anything but Consulate and was crippled by emphysema for the last twenty years of her life. My sister had numerous respiratory problems from an early age culminating in a bout of pneumonia which nearly killed her and left her with permanent scarring of her lungs in her mid twenties. However she managed to quit and has since led a healthy and active life with no lasting impairment. I have already mentioned my daughter who has also never smoked cannabis and has nevertheless had a hacking smokers cough since she was 16 or 17.

    All I can tell you is that every time I have quit the improvement is dramatic, within 48 hours and with every week my breathing is more reliable, bearing in mind that dramatic improvement for me means being able to climb the stairs to my bedroom in one go without using a puffer. When I smoke I need to sleep sitting up, can't cover more than 10 yards without a rest and am so exhausted that I sleep in excess of 15 hours a day due to sheer exhaustion. If I were to chuck cannabis into the mix things are definitely worse. My wheeze rapidly becomes a whistle and even at rest I struggle to control my breathing... hypothetically of course.

    It doesn't matter what or how little I smoke, I can't get away with it. Even secondary smoke now affects me, there's not much difference in my condition between that and five a day so ruined are my lungs. Conversely the pay out for successfully battling my addictions is huge and I now appreciate even tiny things. The days and weeks are easy because of the reward, it's the seconds and minutes that catch me out but I've gotten better at it...

    Am so sorry Evo, have waffled even worse. I suppose what I'm trying to say is you are at a crossroads, I vividly remember that time for me. I got it wrong, all wrong. For the sake of your family, friends and above all yourself I hope you get it right. It's so simple; take every bit of help and support you are offered and quit now, you will never make a more important decision. Peace, love and my very best hopes and wishes for you and your family.

  • Hi there Mrs gif

    Please don't apologize for waffling, the advice and insight you are giving here is absolutely priceless to me. You are effectively answering my own personal questions and thats invaluable.you see, when I talked about heavy cannabis use til late 20s I'm talking some proper toking :-) 12 - 15 joints a day, roughly 2 -3g of high grade buds daily. Plus cigarettes in between when I couldn't build. Mental.. for about the last 5 years its been 4 or 5 joints a day and 15 to 20 cigs. The day I found out I had copd I vowed to quit completely. I went 4 days with NOTHING and it absolutely killed me though I felt so much better physically. A friend showed me a vaporizer ( a ‘safer‘ way to consume weed by warming rather than burning) and I was straight back on the green. I thought I could have my cake and eat it and proceeded to use the vape for about 3 weeks and managed to beat my addiction to nicotine. My lungs also still felt better. But inevitably the vape was working overtime cus as good as they are it just ain't a joint, and I was caning the green which was costing a fortune. " Just build one joint." I told myself. "Use a filter.. one wont hurt you". What a mistake. Obviously a joint contains tobacco. Consequently a month later I'm in the situation I'm in today. The 3 or 4 smokes I have these days are actually 3 or 4 joints and I cant deny I love those 3 or 4 joints. I know some people will frown at that but I work hard I don't drink alcohol or have any other vice. Now who's waffling.. suppose what I'm feeling is I really am at the crossroads you describe you were once at. Do I give up the one thing I really enjoy and if I do will it make a difference? And your information has answered that for me. Obviously 3 joints a day 1 a day one a week, its all the same. Its carrying the cause of the problem forward into the future with me. I must leave the cause in the past. I must leave the tobacco and the weed in the past and I must move forward toward a healthier life and a healthier me. Other peoples posts have shown me how things could pan out by stopping and yours Mrs gif has shown me a probable path if I carry on being a secret stoner. I am so sorry that it didn't turn out so well for you, I promise that your story is gonna change my life, and you should at least feel good that you've done that for somebody. Once the box is empty ill buy no more, so ill b burning my last one tomorrow night. Thank you so much for sharing your story with me, my highest regards to you and your family. Peace.

  • Hi Evo, glad to be of service :D it's helpful to me too, to keep laying it out and reminding myself of what I'm doing and why.

    This is my fourth major quit attempt and hopefully my last. But if I fall off the wagon I will just get back on as many times as it takes and since I have taken this view my health has improved, the periods of smoking get shorter and I smoked far less during my lapses and relapses. I have amazingly supportive friends and family who encourage and cajole and forgive me, that's a huge help and motivation.

    I think I agree with Jack B, quitting is far easier than controlling and I've gotta add that I don't think that it's an option for COPD sufferers; even one a day will not allow you to stabilise your health. I was amazed how little I missed the dope on my first quit attempt. Only managed four or five months without cigarettes but didn't return to cannabis for a year and a half. I thought I would really miss it but it was the nicotine habit that was the real problem. I have lots of friends who have beaten the fags and taken up a pipe or other tobacco free method of consumption but nearly all have ended up back where they started. We have all thought "It's just not the same as a spliff..." and a week, or a month or sometimes much longer it has crept back onto the menu. For me it was because what I really wanted was the nicotine, or maybe the combination of the two. I would think really hard before, during and afterwards; why are you doing this? What are you getting out of it? Do you want to be stoned or do you want to smoke? Most often it was the latter for me and every time I caved it just made the craving worse.

    I'm not saying the same is true for you. Just that what you think is the problem, or the solution, may not be. Addiction is a tricky beast, as clever as you because it will use every resource you possess and every weakness you have to stick around. Knowing your enemy is the key and this means knowing yourself.

    I'll end my lecture here but if you want I have found some homework! Following your question about the effect (affect, idk!) of cannabis on COPD I had a poke around and found a really alarming report by our gracious hosts themselves; the BLF, on this very website. But I've gotta warn you it makes for extremely uncomfortable reading.

    You can download it at blf.org.uk/Page/Special-Rep...

    It's the second item down; titled The Impact of Cannabis on Your Lungs. I was gonna wish you good luck but you don't need that. So instead, strength, I know you can do it x

  • I was diagnosed 10 years ago and I still panic if I'm near anyone with flu. I try to keep fit I gave up the cigs and have a flu jab every year and I aim to live till 140 purely to claim my pension that I paid loads of tax for.

  • Hi Evo, I'd firstly like to agree with virtually all the good advice you've been given, and I'd just like to add my own. I was diagnosed 18 months ago with COPD and couldn't give up, having smoked tobacco and weed for the last 50 yrs. However, 13 weeks ago I got out of bed after a particularly bad, sleepless night filled with breathless episodes of claustrophobic panic attacks and found that it tasted so unpleasant to smoke that I haven't touched one since. I still feel awful a lot of the time, but I'm gradually getting better.

    It's much easier to give up smoking completely than to cut down! Believe me, it'll keep nagging at you. And also, take control, give up, and don't wait like me until it gives you up! Get one of those Nicorette things that you suck, works for me. Take care!

  • hiya evo i was diagnosed with severe COPD AT THE AGE OF 36 i stopped smoking & was on oxygen for 6 years , i starded to do a little swimming & look after myself , i am now 51 & oxygen free & swim most days ,, so its important to take care of ourselves ! good luck

  • Wow Jedi, that is inspirational, thank you. Swimming is something I had given up on ever doing again; had a horrible experience 10 years ago as I don't tolerate rapid temperature changes well and have not had the nerve to try again since. Now I'm thinking that I have another reason to keep on giving up and maybe give the baths another go come the summer. Watch this space!

  • anyone today can be diagnosed with copd but don't worry about it the first thing you have to do is stop smoking and i mean stop smoking i don't mean cut them down just stop

  • tigershay1 the alpha one antitrypsin deficiency test would need to be asked for! Part of the problem with the disease mentioned here is that most go through undected, un tested, and so you 'must ask that they do this for you' to rule it out, many alpha one patients get diagnosed many years after presenting problems with breathing and this is totally down to the ignorance within the medical community of alpha one! It took me a little over a year to get diagnosed, so I was lucky, I found a on the ball nurse as even the Consultant hadn't thought to do 'the test' , it is a simple blood test (finger prick) they send it off and the results are generally back within 3 weeks, not that long to get this very important issue right!! If your child is suffering I would strongly advise you ask they do this on yourself, and depending what comes back you might need to have her tested too, this is a genetic condition so it is passed through your mum and dad directly on to the children, if both parents were carriers which is usual your children then have a one in four chance of developing alpha one, this is a serious condition and one that there is as yet no cure from, but a correct diagnosis is critical to the patient from a survival point of view, please get one done as soon as is possible, too many asthma, copd and emphysema patients are misdiagnosed as there are a estimated 3 per cent of these groups of people unknowingly not tested or diagnosed with alpha one antitrypsin deficiency, so waste no time, and ASK them!!! good luck.

  • Thank you Flo1 i asked my new consultant if i needed this test and he said no you havent got that .....im waiting for results of my ct scan to sed where we go from here. My daughter when a week old had a cough like shed smoked 60 aday and big green bubbles coming from her nose. She was treated for croup and later asthma which she is still being treated for to date. I have never smoked and she was 8.6 born and breastfed so i think she has something not asthma . Coincidently they treated me as asthmatic for 17 yearz till two weeks ago now im not asthmatic!!!! Thanks Judith xxx

  • Tigershay I find it a little daunting that he simply said 'no you haven't got that' how the hell would he know? This is a disease that needs a blood test there is no way of knowing by looking at you or talking to you or come to think of it looking at your past history, he NEEDS TO DO A BLOOD TEST! I would strongly recommend that you ask again and if he is adamant on this ask his reasons why? they would need to be pretty damn good, and I doubt he will have one, you have to have this ruled out, as you state here they already got you wrong once so as this is a life threating disorder you have no time for error and a quick and effective diagnosis will illiminate you , so please ask again, and if he is not playing ball ask to switch to someone who will. I had a nurse test me on the way out of seeing a Consultant (a sort of after thought) on her behalf, he never suggested it either that was 7 years back and boy was that a good day with of course my being correctly diagnosed, incidentally they had treated me for emphysema aged 45 for a full year before we got there, so this is something you need to push for and keep asking on, I hope they are able to help you , it frankly makes me sick the way they treat people here, and the NHS is a total disgrace and in a shambolic state please find out one way or the other , it may help you in more ways than you would know, its not a death sentance but it is severe and you need to know how to monitor the disease should you come back as a positive, I am disgusted by his reply to you...Good luck and please keep me posted.

  • Hi flo1 maybe tigershay's doctor has already tested her for alpha1 but failed to tell her that test had been carried out, its something Judith could establish with her doctor.

    But Judith do check with the alpha1.org site about this if your doctor hasn't done the test :

    alpha1.org.uk/

    Also BLF page on alpha1:

    blf.org.uk/conditions/detai...

  • Hey there calm down! I was diagnosed in my 20s I am 54 ok so life has some difficulties but it certainly isnt all bad.

    getting rid of the fags is the best thing you can do. I smoked 40 a day at one time and was really addicted. If I had a choice between food or fags you can guess what came first. One day I decided enough was enough the dam things were just controlling my life. I went along to a stop smoking group and had some tablets to help stop the urge for nicotine. I must say giving up has changed my life suddenly there was no need to have cash in my purse as I did not need to buy anything. For the first few months I was always running out of cash not that I didn't have money I would just forget to get any from the cash point! I felt alot better I could afford to buy new cloths instead of trawling the charity shops. i could go on holiday. Just think what £12 per day would do for you and the kids. you have everything ahead of you it is your choice now! good luck!

  • Agree on the smoking! I was a massive smoker and it cost me dearly, no turning back with alpha one either as once your lungs are gone they are gone....so nothing clever or funny about the filthy destructive habit, I would suspect that had she had the test they would have surely informed her? after all this is medical protocol, so I doubt it, although you might be right and these people never cease to amaze me, the reason you should get diagnosed are very clear and the very first thing you have to do with any lung disease which of course includes alpha one is STOP! the sooner the better, I tried the tabs but found that the e cigs worked best for me personally, if fact the tabs just made me heave and then I still went on to light up...stupid , yes, but smoking is the hardest habit to quit, harder than herione they reckon ...I smoked 30 years and got heavier as I went along, it killed my lungs, the reason you have to find out what you have is so you can then go on to educate yourself about it and sooner the better...agree with alpha one org lots of information and you certainly need it, I was totally ignorant about it and carried on some 3 years after being diagnosed, big freakin mistake it cost me my lungs and nearly cost me my life...hope you get answers , and keep positive it is a long haul illness regardless of what many say like copd and if you put in the effort you can keep yourself in good shape, I was given 2 years left to live in 2009 , still here today and doubled my lung function from 22% where they were further ready to list me for a double lung transplant, however I smoked so they ruled that out totally I turned it and me around , started to walk got out there daily with my dog (now dogs) and I am up to 42%...I walk nearly a mile daily with supp oxygen but I do it because it helps everyone with a lung disease keep your lungs strong....I am proof of that, good luck, keep positive and never say never, it all helps and it helps to keep focused regardless of what life throws your way, we can and generally do come out the other side, it takes courage when you reach the bottom to start to climb back up and out of it . Alpha one is a stealth disease make no mistake it will and can kill you very young, but most of us live to tell our tales and we are a determind bunch of people with a great sense of fight..all the best to you.

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