I am 47 and my consultant has just told me that I have severe emphysema and my CT has shown a nodule on/in the lung. I gave up smoking 15 years ago and smoked for about 10 years. I get very tired most of the time and just can't do what I used to do. I've worked in the civil service for 18 years and have just gone to part time. Even cutting my time down I still feel tired - thinking of asking for medical retirement. I just don't know what to do. My husband is now retired and I would love to be at home with him for how ever long I have.
Any advice would be appreciated. thanks
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play66
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Hi play66 nothing is ever as bad as you first think, call the British lung foundation and speak to one of the nurses they will answer your questions and hopefully help your anxiety, I know how it feels and everyone on here has been through it, you will get replies from people who have lived a good life with c.o.p.d and kept healthy for years. God bless. Lyn
I smoke 2 + packs a day from age 16 to 53. Ten year later I was told I have moderate COPD. I also have central sleep apnea. I use spirva and advair to keep further damage at bay. I use a BIPAP with Oxygen extractor at night. I still awake every hour to 90 min., there is no repairing my lungs until stem cells. One can loose weight (hard for me) and do cardio exercise (another hard item for me). I too search better for better answers while I await stem cell treatment. Welcome to the club. I maybe 67 and my body confirms that to me but my brain thinks it is 18. I recommend a cat scan every year to check for cancer but smoking did this and I did partake in it for all the reasons that are equal to nails in my coffin.
Good Morning Play 66, That is a very scary diagnosis. Severe emphysema is pretty awful but you can still have a quality of life - my husband has had for years! I would recommend that you ring the BLF helpline (click on the red balloon) - the nurses will be able to help you and give you some very good advise. Perhaps they can advise about medical retirement? Take good care and please get advise from BLF, lots of love TAD xx
Hi Play 66. I was diagnosed 3 years ago with very severe emphysema. I still do the part time job I did before diagnosis. I drive ( sometimes 200 miles to see my relatives ) I go shopping, fix my car, tend the garden. In fact most things that people do. The only difference is that I take a lot longer, rest frequently and sometimes plan things. This is all due to my consultant, my oxygen people, my doc and my partner. The correct medicines are vitally important though. They have made a lot of positive difference to my lifestyle since being diagnosed.
Please don't be scared,you have had some great answers here,from lovely people.I also have had it for many years,& yes,as others said,you do things the same,albeit a little slower!
As for the nodules,I had them also,& had to be scanned every 3 months,to ensure they weren't growing.They did not,so I don't have to worry any more,they can be caused by scarring,or a number of things.
Have you been put on any puffers or meds yet? That might help with your tiredness,also don't forget worry can exhaust you! Good luck with it all,& do ring the BLF. xxx
Good advice to ring the helpline. They are the experts and care ally advise and guide you.
I can totally see why you're afraid to be diagnosed with this especially at 47. Please ring, 03000 030 555' office hours and cost of a local call. They will advise on what to seek from medic. All the best to you and good luck xx
Hello Play66 please don't be afraid, I was diagnosed at 49 with severe Emphysema and here I am ten yrs later feeling better than before! It's great that you stopped smoking! Eat healthy food and get plenty of exercise, you and your husband have many happy memories to make, have lots of fun together! huff xxxx
Hi Play66 welcome nice to meet you.When first diagnosed with any long term illness is scarey enough but when the word 'severe ' is added scares the living daylights out of you especially with breathing issues,cos suddenly you become so aware of your breathing it does feel worse! but its not as bad as you imagine im sure once you get your head round it and a period of time adjusting to what this means for you and your family you will be able to get on with the living of your lives again,See If you can be referred to a PR course which will help you enormously,you normally attend twice weely for 2hrs,1hr of gentle exercise and an hr of learning about lung issues and learn about diet ,meds etc etc tis brilliant have never heard a bad word the opposite people normally say' changed my life completely and for the best' So pleased dont write your self off, Ive had this for 20+yrs now and still going strong and at the very severe stage. As far as work is concerned is personal to you I would think if you could continue this would be beneficial,but equally if your hubby is retired maybe being together and having some new adventures would be a good thing also.Theres a lot more living learning and laughing to be done yet,happy days Janexx
Hi play66, welcome aboard! of course, the first time you hear of this diagnosis you get scared.Indeed ask details of your condition to your doctor and to the BLF (They produce leaflets for each condition).
I had bronchiectasis (part of the progressive obstructive lung disease) since 1994, I was 44 (I'm 65+ and still love life). Keep as active as possible, even if it takes more time to be active; make allowance for that.
I don't go very far these days, but I still go to the gym and I have just taken singing with a COPD group, which I enjoy very well, as others in my category semm to do too! There's a bloke in our group that can keep a note for very long - I'm envious of him!
Have you been referred to a pulmonary team nurse? If not, that would be the best thing ever, because those kind of nurse are very competent in lung disease. They can refer you to a physiotherapist to give you practical advice on how to breathe. they can put you on a six weeks exercise sessions, after monitoring your abilities. They re the best thing after Polo mint!
You can talk to them about your anxiety too. Yes, at first we don't know what hits us.
Oh and also, you are so brave to have given up smoking, that was the best step you took. Be in charge of yourself and your lungs will love you! Tell us of other questions you might have, because we do suffer, but we somehow live on! You can do that to!
Hi Play66,look at the positives.You are comparatively young,this is a positive because you have early diagnosis so you can get the best meds and advice.You have the choice of early retirement to be with your hubby.At first you will feel the end may be nigh but once you learn how much you really can achieve you will be fine.You can still do everything it just takes a wee bit longer .I was diagnosed with severe Copd ten years ago,emphysema last year and I,m more active now than ten years ago.It,s not a death sentence just a time sentence.Talk to the blf helpline I,m sure they will put your mind at rest,all the best and good luck for the future,keep in touch with us we,ll see you alright.D.
Firework,hi play66 , I am so sad to hear your news, please talk to your specialist again, if it was severe emphysema you wouldn't manage to go to work at all,you would be on oxygen at home and you would only be able to walk a few yards, as for the nodule I dont know about that, with emphysema you will feel tired, maybe it's time to retire on medical grounds the stress of trying to work when feeling so tired is not good for you , I wish you all the best xx
Thank you all for such comforting words and making me feel like I'm not the only one in the with this. I am on Spiriva, steroids and the relievers. I will call the helpline.
I've recently moved to norfolk after nearly 30 years of working and living in London. I hope the air is better for me. I keep trying to push myself to do things but as many if you say it does take longer. I had a pulmonary embolism three years ago and despite many chest xrays and ct scans the emphysema was not seen. I suppose it can happen quickly - I'm not sure. I have been feeling very low since seeing the consultant but I suppose this is normal.
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