where to now

I suffered a really bad chest infection last September, and another in November, had a chest xray which came back 'clear'. Over the past few years I have had a few chest xrays to look into various things and always 'clear. following the episodes in Sept/Nov I was sent for a Cat scan and lung function test together with a myriad of blood tests. I now have been diagnosed with emphysema, lung function loss of 60+%. How can this happen so quickly, I have had no warnings and basically now diagnosed have been told nothing. I am taking spiriva and serentide, i was a smoker, but have stopped (fingers crossed) I am feeling lost and scared and my husband is looking for information that I cant tell him which is causing arguments. I cannot plan anything or look forward as noone can tell me how long I will be well enough to look after myself. Any information will be very well received.

14 Replies

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  • Hi Kad - COPD/Emphysema is NOT a Death Sentence! You will meet others on this website that have been diagnosed for many years - personally I have had E for more than 14 years and I am still around to tell the tale, and whilst my life is not the same as before, it is nevertheless quite tolerable. The three essential tenets in meeting E head on are - (1) Stop smoking permanently (2) Good diet and (3) Regular Exercise. The British Lung Foundation has a kit available to those of Us who have E (I purposely don't use the word "Sufferers" as we need to stay positive). Either call or send an email to BLF - click on "About Us" on the bottom of this page.

    It is very important that you stay positive - while we all become dispondent from time to time - but to do so is not very productive in the scheme of things.

    Click on the "Blogs" and "Questions" tags on this page and read what others have to say. You can also ask your own questions and make your own blog for others to read and respond to.

    Lastly Welcome to this group - you can be sure you will have many of us on your side. Stay well. Martin

  • Hello Kad and welcome to the site. I remember feeling how you are feeling now. Martin gives good advice. Knowledge is power. Contact the BLF helpline and they can send out all the information you need. They will also talk to you about your own condition and answer questions. And the rest of us are here as well if you want to ask for our own experiences of anything in particular. Stay calm. The disease does progress but not usually at a very fast rate. I had lost 67% of my lung function at diagnosis nearly 8 years ago and I am still here and plan to be for a while. :) Others are 20 years past their own diagnosis. Staying off the cigarettes is your best move at the moment. Good luck.

  • Thank you Martin and Auntymary,

    is an impolite question to ask how your quality of life is at the moment? I am really shocked that I have little or no symptoms and suddenly have lost 60% if this is how fast I progress I feel I only have a couple of years left

  • Dear Kad

    Please calm down otherwise you will frighten yourself for no good reason! Quality of Life - this is "what you make it". You can either surrender or you can fight. Those of us that choose to fight have a pretty good quality of life - you can do virtually anything you did before - but slower - take your time. My exercise regime (daily) includes 30 mins on an exercise bike and walking the dog. We live in a hilly district which does mean things are more problematic breathingwise - but a slow consistent pace get me to my destination without too many problems. My FEV1 hovers between 17% and 25% and I would not put myself in the "too hard" basket. Stay well. Martin

  • I remember being diagnosed, and being silly enough to "Google" and read many (mainly American) articles and frighten myself almost to death! Emphysema (COPD) is a LONG-TERM disease, not something which usually deteriorates quickly. Your own loss of lung function will not have been that sudden. Chest x-rays alone are not really much use for diagnosing emphysema so it was not until you had the other tests that it became apparent. It is very important to stay away from cigarette smoke and other pollutants, to take regular exercise, to have a healthy diet and to keep a positive attitude.

    Some who are newly diagnosed and in the "mild" category may decide they are terminally ill and take to their beds. Others who are classified as "severe" are still working. I think quality of life is what you make it. :)

  • Hi Kad

    I was diagnosed last month with emphysema and asthma. Since starting the inhalers, I am feeling increasingly more positive. I love this site as I no longer feel alone and lost in ill health. I am now beginning to get out and about and doing my normal things. I gave up smoking a few years ago and have stayed off, because I want the best quality of life I can have. Martin and Auntmary are right about the exercise, when I first joined this group I was a bit scared to move, but I read other peoples stories of their lives and read the answers to others questions and it gave me most of what I needed to know and that is, just get up and carry on as normal (just away from smoke and pollutants) I wear a light scarf now and use it to cover my mouth and nose in germy places and if the air is too cold. I carry my puffer and a little bottle of water. Other than that just a few changes like use a roll on deodorant instead of sprays and when doing housework I now use wet wipe cloths instead of sprays

    I do my best to eat healthy but I usually eat salad and fish followed by a good helping of chocolate. :) If you get a chance for Pulmonary Rehab then you should go for it - I start mine next month. Like Auntmary says there is also a helpline if you need a medical answer for that hubby Helpline - 03000 030 555 -

    Anna

  • Hiya Kad Bit of a shock wasn't it? Not to worry. If you keep coming on to this site my elders and betters will give you most of the information and advice you need. Anything they can't answer the BLF will, just ring them. It might be a good idea to get hubby to do the same. I was diagnosed with emphysema eleven years ago and I am still going strong. Keep your chin up. Bob xx P.S. I reiterate auntymary's advice, stay off the American websites, many are ill-informed.

  • Hi and welcome kad2. I was diagnosed 2 years ago with emphysema and it happened very quickly as well. My diagnosis is very severe. That's the bad bit.

    Now the good bit. Now I am on the correct medicines I do everything I did before getting emphysema but now get short of breath if I do anything strenuous so I rest more and take more time doing stuff. I still work at my part-time job I had before so life is normal except for taking more time.. Exercise is the best thing after not smoking.

  • Thank you all for the feedback, I do exercise to a point every morning, taking my dog for a walk, I am thinking of taking up Yoga, as I thought that would help my breathing too? I have read that you have to be careful how much exercise you do, but am researching this too. One thing, my doctor told me NOT to loose weight, why would he say that, I know I should have questioned him but was in a state of shock at the time.

  • Typically E sufferers (loathe that word) expend more energy that "normal" people. It has been reported anectodally that E'ers (that's a better word LOL) expend between 5 and 10 times as much energy - so for a normal person a 1 km walk turns into at least a 5 km walk for a E'er. As a consequence loss of weight is to be avoided, in fact a little extra weight is recommended. Regards Martin

  • Wow guess thats one positive, more chocolate!

  • Hello Kad21 welcome to the group, if you click on my name you can read my profile which may help you see that life doesn't alter much just slows down! Keep smiling.

    Carole x

  • Thank you Carole,

    It is lovely to meet such a positive person, I dearly hope that my life progresses as 'slowly' as yours xx

  • Hi Kad 21 I think I know how you feel right now. I was diagnosed with COPD last August and was told that I too had lost 60% lung function. It frightened the life out of me initially. I became quite morbid for a short while but NOW I understand the condition much better and life still goes on. I have travelled to Europe three times since diagnosis and with a bit of forward planning can do most things. I will never be able to climb mountains or run or carry heavy shopping, you learn to adapt. Maybe I am lucky in having a fabulous wife, a very good doctor and an excellent specialist at Whipps Cross hospital. Advice would be to never smoke, keep as fit as you can and join a Pulmonary Rehabilitation group. PR is brilliant and the exercises really help. Try not to get too down as it will make you feel worse . There are many much worse off than you and me. It's not easy initially but I still enjoy life just get bad days and detest the cold winters. Good Luck. Adrian

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