RECENTLY DIAGNOSED WITH EMPHYSEMA

I'm a 33 year old female and after having breathing difficulties was sent for a chest xray. My doctor diagnosed me just yesterday with emphysema. I don't know anything about this condition and my doctor has said it is rare in someone my age (although I am a smoker who has smoked for just 6 years currently on champix desperate to quit) My doctor is sending me for more tests to test my enzymes(?!) I was hoping for some reassurance that this is not a death sentence as I have a beautiful baby boy and the thought of having to leave him breaks my heart. I couldn't think straight yesterday to ask all the questions I need answers to. My mind is just racing.

27 Replies

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  • Hi Sounds Like You Have Proactive Doctor Who Is On Ball With Your Condition And This Is Always A Good Thing

    As You Have Stopped Smoking That Will Help Know End .... Having Emphysema Is Not A Death Sentence Like You Think ...... Just Need To Take Things Tad Slower And Stay Clear Of Air Pollutants

  • Hi there Lilh.

    Don't panic, additional tests will show a lot more, but it is not a death sentence. I think something like 79% of people on this site have the same, I do. You are young to have it, so they might be testing for a genetic link. I don't know much about that, but others will be along who do.

    All I will say is giving up smoking is crucial. There are many people on this site who have had emphysema (often called copd) for many, many years and are still going strong.

    Use the BLF site to learn more, chat on here for moral support and ring the BLF helpline on Monday to talk to one of their experts, they are great.

    Don't worry, you will see your little baby boy grow up.

    Lynne xx

  • Big hugs to you lilh.It must have been a shock for you,the diagnosis.I think from memory there is someone else on the site,that is your age group.I had severe asthma,which then went from bad to worse,finally being diagnosed with Copd.That was about 20 years ago now.Have had my ups & downs,& adjustments to my life style at times,but refuse to let it completely rule my life.Its only a part of me! I managed to work 3 years further,than what I was advised.I have 7 Grandkids & still managed to mind them when babies,I admit I was knackered at times.lol!!

    Do get in touch with the BLF, they will be able to advise & support you.

    There are lovely people on this site,that will advise & support you,you can have a good laugh with them,& at times cry.

    Do let us know how you are copeing,before going to the Docs.in future,write a list of questions etc. down which you can refer to.They are used to that!

    Love Wendells xxx

  • Hi, good advice above, giving up smoking is the best thing you can do however difficult.

    This is not a death sentence! Obviously avoiding colds, flu, bronchitis is a good thing, with a little care you'll go on for years and years.

    Your further tests will tell you more with some hard facts to go on.

    You have found a good site here with many many knowledgable people suffering the same or similar or caring for someone who has.

    Come here for information, reassurance, support and on a bad day to moan - we are all here for each other.

    Welcome and good luck,

    Chris

  • Hello and welcome

    Great advice as always and they're right don't panic and dont google. Just have your tests and wait to see if you get any medication, well done for staying off the fags.Everyone on here know exactly how you feel.

    Kim xxx

  • Agree with all the above and with Kim about not googling, stay on this site and let us know how you get on.

    Lib x

  • Thank you all so much for replying so quickly, I purposely didn't google the condition as I know it will probably bring up lots of horror stories. But I did search for support groups and this site was top of the list and I'm glad I found it. I wanted to hear from people in similar positions as who else would know better and your advice is so valuable and I'm more than relieved to hear it doesn't have to mean a death sentence. I have been so frightened as I obviously wasn't expecting this as my diagnosis so didn't have time to think about questions I wanted to ask. I have had 5 chest infections this last year so i guess its a relief to know why. Can i ask do you feel tired at all as I just feel exhausted all the time and wondered if it was linked as beginning to think i'm plain lazy! Thank you all once again, I can't tell you how relieved I am to hear I can still be around to see my little man grow up and even eventually look after my grandchildren! I feel so much better now so thank you, what a wonderful site this is. I will definitely ring the support line on Monday. xxx

  • I'm afraid tiredness is a factor, but if you quit smoking and try to get fitter with some aerobic exercise, I think you might find you get more energy.

    Lynne

  • Thank you, I must admit I do lack exercise since having my little one although I do a lot of walking as I don't drive! Will look into joining some classes as I find going to a gym a little intimidating! And I will definitely be giving up the cigarettes but I have been naughty and smoked a few since getting my results!

  • lilh

    Pop in anytime sweetheart. Most of us on here have a similar condition or are caring for someone. I was diagnosed with emphysema 11 years ago and I am still going strong. Others on here have had it for more than 20 years. So chin up girl and up and at 'em. Love from Bobby xx

  • Thank you, that is so reassuring to hear you are still going strong 11 years on, glad to hear you are doing so well, I intend to stay positive and am determined to see my baby grow up, graduate, get married, and have children! I'm going nowhere! xxx

  • Hi and welcome lilh. Most has already been said on here. Number one is to give up smoking and number two is exercise. I was diagnosed 2 years ago with very severe Grade 4 emphysema. I do everything I used to do before I got diagnosed. I just take more time and have more rests because of getting breathless. I still l work. Hopefully yours is mild and, once you get the proper medicines, you'll feel a lot better.

  • Hello lilh I think everyone has said what I would say, stopping smoking is most important for you and your little boy. I was only diagnosed on 7th march this year with emphysema and i was give some puffers, and in that short time of taking my medication, my lungs are feeling stronger and my chestiness has cleared almost completely. And may I say your little lad is very handsome :)

  • Hiya was diagnosed with a genetic form of emphsema it called alpha 1 antitrypsin defiency I have the z form which means I got a deficient gene from both parent ' we have 2 genes one from each of our parents that protect our lungs but cos of the defiency it doesn't protect them so can cause early breathing problems and empheysema . I'm 37 I've been breathless for about 4 yrs but got really bad in the last year so have finally been investigated . I've tried to explain it best I can , if u look it up only go on uk sites . If u want to chat more private message me take care

  • Thank you so much for the advice, I've never heard of that before but it must be what my doctor is testing for. I'm sorry to hear you are unwell and hope they find you a treatment that helps, good luck xxx

  • you need to ask your doctor he is the best qualified person to tell you has he will know how much damage you have done to your lungs it is unusual to get emphysema at 33 although not impossible. please do give up smoking has soon has you can. follow the guidelines as well and you can get useful information about your illness in the b.l.f. leaflets also online. unfortunately it is a progressive illness. however following the advice to stop smoking take gentle exercise do things at a slower pace and getting your breathing under control. also you are probably very lucky in the respect your g.p. has caught it at early enough stage.

  • can i also add that there are lots of support groups and should be one near you if you contact your g.p.or nurse or even the b.l.f. helpline they should be able to tell you where the nearest one is and although these groups are not medically qualified to give you medical help they can indeed give you support and lots of good info also you will find people in that group that will have the same thing as you so will understand a lot more. if your by any chance in the east durham area we hold one at the rosby road community centre its like a mini health centre and we have guest speakers and lots more going on

  • Thank you for the advice, I smoked my last cigarette last night having got over the shock I am determined to NEVER smoke again, I feel so selfish having smoked in the first place and risking being ill when I have a little one to look after. But I can't turn back the clock and judging by all the fantastic advice I've received on here there are many ways to control it and no reason why I can't live a full and normal (ish) life. So glad I posted my question and found this site as I can't tell you how much you have all put my mind at ease. To be honest I didn't know there were so many people out there with this condition, I had heard of it but always associated it rather ignorantly with the older generation but I see many of you are in your 30's, 40's and 50's. Good luck to all of you and look forward to speaking with you all again soon x

  • Hi there, I'm so glad you've been reassured by the good people here. Somewhere on the site there's a link to a blf web discussion. It's very informative and explains clearly what emphysema is, how the lungs are affected by smoking, advice on giving up and more. I think you'll find it very helpful.the link was mentioned in blogs yesterday and the day before.

    Sincere good wishes to you for a long and healthy life. P

  • Thank you so much will check it out as would like as much information as possible but from a reliable source - as I know it will be on this site. And any tips on quitting smoking would be appreciated as I don't have a lot of willpower! But sad to say I think this diagnosis is the kick I needed. Wishing you all the best too x

  • docs always blame iy on smoking

  • Hi, I have just joined this site tonight, and one thing I would recommend is that if you have to take regularly anti inflammatory steroids like Prednisolone which are often given out to people with COPD, then make sure your Dr gives you something to counteract the steroids, which can give you dry skin and hair, and to keep your bones healthy. I'm really pleased to have visited this site and I only wish I'd found it sooner, since I was diagnosed 6 years ago after a bad chest infection went too long and I ended up in hospital.

  • hi lilh im pleased you have come on this site because it does give a lot of useful info. has for tips on stopping there is thousands of them. but when i got emphysema i went to see a smoking cessation. or counselor has i call them he was wonderful he asked me when the main times i reached for a cig. it was during the night if i woke up first thing in a morning, and at meal times out for a drink with a cuppa sat watching telly. the usual. he told me not to stop straight away. but to time myself. he gave me patches. now what i did was when i went to bed i told myself i didnt smoke. and when i woke up during the night instead of reaching for a fag i didn't i went to the loo got back into bed.the next morning i got up and made a cuppa telling myself id wait for a cig till after some breakfast . then i told my self to wash the pots and do my housework. by the time id done this it was mid afternoon. so i had a cig. and then i made myself busy right upto tea time. by which time i had another cig. then one more before bed. the next day i only had two cigs. by the third day i was just having two the following week one then the third week none. it was hard work but i did it and bear in mind id gone from between 40 and 60 cigs a day. and none believed me my family started to watch me especially my daughter. but once id done it she was so pleased. the big test however was when we went out to the pub because everyone was smoking and i just kept telling myself i didnt smoke. and i was so pleased because it worked. and then there was still smoking in the pubs. so really its psychologically telling yourself you don't smoke nor do you want to. that and willpower. oh and by the way the breathing test you do to see how much carbon off the cigs you have in your system well i scored less then my councillor and he was surprised.

  • Well done for quitting and thank you for the fantastic advice as stopping smoking is going to be the hardest thing for me. I started smoking after my Dad died (i had no children to think about then) then almost used it as an emotional crutch. But I seem to reach for a cigarette the same way you used to, First thing in the morning with a coffee before my little man wakes up, after every meal and practically chain smoke when my little man goes to bed out of boredom I guess. I had my "last" cigarette yesterday and had an early night but all I can think about since waking is having a smoke. All I want to do is go and buy some. Even after this diagnosis. I just feel so selfish and terribly guilty. I think cigarettes should be illegal. I am taking champix but they are just making me sick. I've tried patches and gum too but they didn't help at all, I guess what it all comes down to is sheer willpower - something I have always lacked. I will definitely try some of the tips you have suggested and try to keep myself busy. Thank you so much for replying x

  • hi lilh just another thought as champix don't always agree with everyone. why not buy one of those electronic cigs and try the patches along with that because by the sounds of things your main problem is boredom when your son has gone to bed. so try that along with having a friend round to keep you company one that does not smoke if you have one that does not smoke. and you can look me up on facebook my name is pearl smith i have a dark top on and everytime to want a cig message me if i'm online il chat to you. really its all down to willpower and friends that will encourage you to stop smoking. and tell your friends not to smoke round you till you can stop

  • thank you once again for the great tips, I have tried the patches but because I have sensitive skin and the fact I didn't really find they were helping I stopped using them. I was thinking of getting one of those electric cigarettes, have you tried them? Just wondering if they really work. I moved towns away from most of my friends and family so inviting them over is a little tricky. I'm not doing myself any favours here am I! I will add you on facebook if you are sure thats ok, but I haven't mentioned anything on there yet, at least not until I know more after my tests. Thank you very much, you are all so lovely on here xxx

  • my friends have tried the electric cigs and my husband is currently using one. the thing is lilh there is all kinds of stuff out there and with the electric cig you can you that with anything else because it does not contain nicotine. and there is other tablets tell your smoking counsellor that you have sensitive skin and that you feel sick on the champlin it could well be the doze wants lowering. and yes i can see you would have a problem inviting someone round if you have no friends round about you. however i'm on facebook most nights up to around nine ten pm. and if your fingers are busy you won't have time to smoke. and the electric cig will help because yo can sit and hold it in your fingers like a normal cig and pretend to smoke just the same so long has you physiology keep telling yourself that either A you don't smoke or B that the electric cig is a real one. and yes your welcome to look me up and has i have lots of friends who knows there maybe someone who lives near you depends on where you live. willpower strength determination not to be beat by the cigs and you will do it.

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