coping with COPD

Hi my name is sonia im 41 and got diagnosed with COPD 3 yrs ago. through out my life i have always suffered with chest/lung related problems, i was born a bronchial asthmatic, had pleurasy at 15, pnuemonia at 24, 2 pnuemothorax's and lung sealed off at 32, and at 37 diagnosed with COPD, although i knew i had it years before due to the constant breathlessness , but i never told anyone as i smoked and at the time enjoyed smoking. But i grew worse, constant chest infections, admiited to hospital several times, and then it hit me hard and i packed up smoking in november 2013. Throughout the months after quitting i went to pulmanory rehab, but i found it was getting harder and harder to do, i went to the docs complaining of chest pain and he gave me pain killers and did some blood tests, the next day i recieved a phone from the surgery asking me to go straight to my local hospital with a suspected PE, whilst there i had a CT scan and the consultant told me i had Emphasema, that was as shock as although not uncommon he said he wasn't happy telling me i had it at my age.

After lots of crying and down days, yet another appointment arrived and i went to see another specialist who was a lovely doctor, asked all about my symptoms and past history and then said she was going to monitor my condition, and said i needed to have some blood tests done while i was there......., so sick of having them done i explained i had lots done when i had my CT scan 3 weeks previous, so she looked on my pathology results and then told me i have, Alpha 1 Antitrypsin Defiency. I was born with the condition, its heredity, its progressive and people with it can suffer not only with lung problems but also liver problems. All four of my children have now got to be tested. I am so angry that the hospital where i had the CT and blood tests done have known these results for 4 weeks but never informed me, or my doctors. when i phoned my COPD nurse and told her what i had been diagnosed with she said " oh sonia i am so sorry, but that does explain why u have been getting worse in such a short period of time".

So the constant fatigue, weakness, cramps, bruising, are all to do with A1AD. SORRY my post is so long winded but i felt so lonely and isolated ( although my family are fantastic ) after reading other peoples stories i don't feel so lonely ,although i don't seem to be able to snap out of the depression mode. Thanks for reading. Sonia xxx

33 Replies

  • Sorry to hear about your situation Sonia And I was diagnosed with emphasema some 17 years ago and it doesn't get any better and still having blood tests and nurses are a pain. always wish to play down what you really feel "So demeaning " trivialising what you suffer. I hate my illness it has shut me out of everything and people just don't wont to know. Well you are a female its different for them where the social life is concerned, someone somewhere is always interested in a female. but as for your illness its true you have this Emphasema very young ,I hope that there is greater discoveries is medication in the near future for you Bless you my sweet be strong,you are going to need to be eric

  • Arh Eric, thank u, yes ur right I always feel fobbed off when I'm telling them how I feel but now I been diagnosed with A1AD they will listen I will make sure of that, just reading ur reply made me feel better and cry at the same time, so thank u for reading and taking the time to reply. Sonia xxx

  • A1AD not too sure about that one ..... but I'm glad you are getting some positive result nice to know .smile sometimes coz its good for you and being happy is in its self sole lifting and healthy, lots of love eric

  • its called Alpha 1 Antitrypsin Defiency its genetic and heredity, the liver makes enzymes to protect ur lungs but having A1AD my liver doesn't so, any illness or daily living, dust, fumes, continually damage the lungs till my only option will be a lung transplant. lets just hope new technology and meds might be able to help, thanks sonia. xx

  • Thanks for explaining that for me, now a little clearer. wish you well Sonia

  • Hi Sonia,I am 56 and in gold stage Emphysema,I was diagnosed with it at 32 as my dad had it.I had a weakness in the chest from a small age due to T.B but like a fool I smoked.

    I gave up many moons ago, and to be honest I deteriorated and ended up in hospital on numerous occasions with exacerbations.Please don't feel lonely sweetie, we are all under the same umbrella here,and I will say since I have joined ,I was welcomed into the fold straight away..The people are lovely and will give you any advice if you need it..

    I am awaiting a lung transplant at Brompton,I won't bore you with the details,but if ever you want to chat hun, I am here and usually Emphysema and depression goes hand in hand, not surprising its a horrible disease,but I always say there is always someone worse off..Chin up Keep smiling and here for you ..Luv Laura xx

  • Allo Laura , they are dragging their feet with this operation. Been to the Brompton and St Thomas's and result was lungs too far gone for lung reduction. :( not much can be done when nothing can be done then in rushes depression .but gotta smile .to keep the gloom away. I hope you get sorted soon Laura. As you have a boyfriend and family that's a comfort to you . I know its hard sometimes ,and what may seem to you, all the time . but hope is all we have .So I truly hope that resolution will come quickly for you bless you eric

  • Hiya Eric, poor you,I am still waiting,but have to do 8wks in hospital gym first..My lungs are shocking,first they said coils,reduction, now because I am so ill I will be having a transplant..I am scared but if it keeps me breathing for another cpl yrs I got nothing to lose..

    There must be something they can offer you,I am so sorry Eric and I know deprssion is a horrible thing to go through,I am on 45mg Mitrapazine they help a lot and get me through the day..I hope your niece is still taking good care of you..God bless sweetie take care sleep well Laura xx

  • Thanks Laura much appreciated only bin on here a few hours and had some lovely replys, nice to talk to people who know what ur going through, my family are great but i always play down how im feeling, deep down i think they know but we all try and be lighthearted as we don't all need to be depressed about it. I to have been told a lung transplant will be offered in time, but for now its try and carry on as much as i can ( which isn't a lot ) due to the constant fatigue and weakness, never watched so much "Come dine with me" lol. i do find standing and sitting upright difficult so in between hosework ( that i can manage) and popping out when needed my bed is my new best friend so to be able to just log on here and have lots of new friends is very much appreciated. Thanks sonia. xxx

  • I am the same with my family and boyfriend Darren, but he can tell how ill I am from one day to the next..Some days I am pink and others grey lol..I have energy drinks fortijuice from the hospital, full of nutrients and they help with the fatigue.

    Try and do as much as you can as exercise is actually good for your lungs in moderation..I am in the hospital gym September for 8wks to prep me for the op.

    Take care sweetie, Here if ever you need to chat ..Laura xxx

  • Hello Sonia

    You poor thing you really have been through the mill, and for so long but you've found us now and everyone will help you find a way to cope. You've quit the fags so onwards and upwards, has anyone suggested Pulmonary Rehab exercise really does help your breathing and your mood. Please don't feel your alone someone will always be on here to chat to, most of us understand the big black cloud that sometimes hangs over us.

    Good luck

    Kim xxx

  • Hi kim, i did go to rehab but really struggled but we didn't know what i had ( the A1AD) so will try again cuz although i struggled doing the exercises, socially i enjoyed it ( even though i was the yougest there lol ), and i feel slighty brighter already just being able to chat to people on here who know wot im on about and give good advice or just lend an ear. Thanks sonia

  • Brilliant I'm glad your feeling more positive.

    Kim xxx

  • The power of the right words, nice to read so many positives and good advice. xx sonia

  • No need to feel lonely. We are in this together and are here for each other. Try to rule it, rather than it rule you.

  • hi, im trying but its beating me at the min but i will keep trying im to strong minded not to and i have a great family to fight for, just this fighting is exhausting lol

  • Sorry you are having a rough time Sonia, this disease is a drag. But we have to get by so don't give up the fight or the disease will beat you. Also when we are down infections creep in and you don't want that do you? Take control and try to live each day to the full. everyone here will support you to get through.

  • hi katie, thanks for that and i know your right but just trying to do normal things is exhausting then that gets u down cuz u can't do it, horrible vicious circle least now when i do have to take to my bed i can come on here have a friendly chat, good advice and an all round pick me up, thanks sonia

  • That's the idea Sonia, there's always someone on line as our members come from all over the world on different time zones. Have a good day I am off to the theatre later see Hairspray local amateur dramatics. Do it while you can is our motto. Everyone on here is in different stages of their illness and many of us have more than one chronic illness. So bye for now speak again soon.

  • Hello Sonia ,just to reiterate we are all here if you want to chat or even just have a good old moan(I do all the time lol) as we understand.I have severe emphysema and it does get you down now and again but hey ho.Hope you feel better soon.D.

  • Hi, thanks for that, a good old moan, occasional cry never hurt any1 lol but I must admit good friends and advice doesn't half help. Thanks sonia

  • My dad died 25years ago. he had emphasyma. I now have bronchiectasis, maybe because I had pleurisy as a baby. I am 80. I feel sad and guilty when I think about my dad. he had been a bricklayer all his working life, a dusty job. he had so little medical support never had oxygen only antibiotics when needed. he did smoke, not heavily, and in his old age a skinny roll up just out of habit I think. He was almost 80 when he died at home in his sleep. he coped so well and only became housebound in the last 3months of his life. We never understood his illness and just pestered him to give up smoking but I wish so much that I had actively sought better treatment for him. It's so good today that people talk and understand their different illnesses so well. 25 years may not sound long ago but it's a world away from today and the modern world is not all bad. We were ignorant in many ways.

    Best wishes to all the folk on this great forum. Iris

  • Hi iris At 80 yrs of age ( I hope I get there ) u are doing great, and thanks for the reply. Xx

  • So sorry Sonia,guess everyone has said it l send you a hug

    Take care Nellie

  • Hi Nellie thanks for the hug much appreciated and sending one right back. Sonia xxx

  • Sending a hug Sonia as new to all this can only read all the posts and pick up everyones advice

  • Thank u for the hug much appreciated and sending one back as we are all in the same boat and a hug always helps. Thanks Sonia xxx

  • Hi Sonia,

    I too am A1AD .... bit of a bugger, but you just have to get up & get on with it. I've never really been a smoker .... the odd occasional puff behind the bike-sheds, the odd spliff at parties, but nothing regular or heavy. I was diagnosed at 42 & am still here at 62. Yes, I was angry as hell at first - the why me, I didn't even smoke syndrome, but hell, you have two choices - either go to some very dark places or move on & get on with life.

    Before reading anymore, watch this ....... this guy is such an amazing motivator .....

    I went on Pulmonary Rehab quite a few years ago & have just recently convinced them to allow me to re-do it ...... I think the first one was too early, when it hadn't really sunk in just how significantly the disease was and how important it would become to learn to live with the progressive disability that is emphysema.

    I had always planned to retire at 60 & to be driving around for months on end in the motorhome chasing the sun & surf ...... I have the motorhome, we do get away, not often, but we do get to S.Europe, it's one hell of a struggle to drive there but such a positive boost each time we get there. Driving the sofa & TV come so much easier, but be warned, fight it, they're just traps to imprison & depress you. Death by armchair is a very common name for emphysema ...... It's so important to get off your bum get out & do all the things you have planned, before you get to the point where you can no longer do them. ...... & trust me, once you're out & about doing things, even small things, you'll feel so much more positive.

    The only magic bullets for AiAD & emphysema are those in you're head. Try & see the positives & the lighter side of your predicament & life ..... & please, for the family's sake, get out & about, start hitting that bucket list ....... & laugh a lot.

    Bugger the money, bugger the worries or does the house need decorating or the carpet need shampooing ..... it's all trivial stuff ......

    Drugs ...... yes, they help, yes, there are new developments in the pipeline, there always is, but don't become obsessed with them .... something new announced today can take years to come through - & then not work.

    I was first offered transplant over 15-years ago. I did my homework, checked out survival rates & post transplant life expectancy, visited & spoke totally openly with quite a number of post transplant patients & shock horror, took a measured view to not to go with it .... yet. With hindsight I think I made the right decision for me at the time. Since that venture I've now lived 50% longer than the average post transplant patient, I'm still here, albeit struggling, but I am still here ...... & I do still have the option of a transplant whenever I'm ready.

    I've travelled a lot & seen a lot & learnt how important it is to focus on positives ....... family, partner, you've been blessed to have had your own children, you don't live in war-torn Gaza, you have all your limbs, you're not starved & living in a refugee camp, you're not in a filthy hospital in rural India, incontinent, paralyzed & fed by tubes. By global standards we're actually all pretty fortunate, even those of us with emphysema ....... don't let it get you down, appreciate every minute of it ...... over two-thirds of the world's population have a far harder daily struggle than us .... we only have emphysema to cope with.

    Good luck .......

  • How fantastic great reply and much appreciated will try not to end up in that armchair lol. Big thanks sonia

  • Just read this now , Out for lunch and am blown away by your courage and spirit. I hope to take many leaves from your book.

  • .... If you have just half of out-to-lunches spirit you'll do not half bad :-)

  • Hi outforlunch,

    everything you say is true and we do have to count our blessings. It's so easy when you are out and feeling rough, to look at other people, obviously older sometimes, and think they all look well, but we don't know their story, do we?

    We recently had a burglary so that's shaken us up a bit, we are locking doors so much we won't be able to get in ourselves! I doubt if the money they took will improve their health, they even took some of my husbands medication!

    Family and good neighbours rallied round, we see ourselves as fortunate to be so loved.

    Press on regardless!

    Love Iris

  • Iris I'm so sorry as if our illness is not enough to deal with , great u had good family and neighbours, best wishes to you, Sonia xx

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