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Just been diagnosed with copd - I am so very upset.

I just can't believe that I have been given this diagnosis. I nursed my brother up to the day he died of copd - he had had chest problems since he was a baby and died of COPD at the age of 43. I am now 61 and have always been healthy, I swim every day sometimes twice a day. I also work full time and look after my 89 yr old Dad. I have no one to turn to as I don't have a partner - I feel like just lying down and dying right now as I know the pathway this COPD will take. I will most likely have to give up work as I am a clinician with the NHS so I deal with chronically ill people every day who bring all their colds flues with them to appointments. I just don't know how I am going to live with this nor what I can do to carry on working.

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Dear Moosemoose - firstly welcome to this friendly site. I am sure there will be other members along soon to help you. Given that you have always been healthy and your brother had chest problems since he was a baby, you may have a much better chance of managing your COPD and being able to live a good life. Your healthy exercise in swimming will be a great help. I hope that you have good support from your GP practice. Because you work with the NHS you are probably aware of pulmonary rehabilitation courses and one of these could help you a lot with information, learning to exercise safely and meeting other people with respiratory problems. You could also call one of the BLF nurses - the 'red balloon' at the top left of the page will bring up the number. Please let us know how you get on. Best wishes.

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Thank you so much for taking the time to send a message to me. I am in pieces and don't know how to cope. It's funny - I do think that nurses/doctors/caregivers in the NHS often make the worst type of patients! COPD was always my biggest dread when I watched my brother in his final days never thinking for a minute that I would have any chance of getting it too. I feel I was given a diagnosis and then just dismissed with an inhaler with instructions to take it for the rest of my life and don't get any chest infections!! Not very helpful nor comforting.

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Hi from what you have said you are at an early stage and there is every possibility you can hold it steady or only progress very slowly.

I was diagnosed with mild copd at 54 and the doctor told me not to worry as something else would get me first ie old age. My lung function is the same now as when I was diagnosed.

I expect you to have many more years of healthy life yet and be able to work without problems for as long as you want. If your level is similar to mine then your main symptoms would be breathlessness when going uphill and climbing steps and feeling a bit more tired than usual. Please try not to worry too much.

Oh 1 other thing - you are not your brother! x

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Thank you for you kind and helpful reminder that I am not my brother. I guess I watched him in his final years which was so sad but he always had problems with his chest as a child. Thanks for reminding me of that.

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You have not said what stage you are, your FEV%?

People are living a lot longer with this disease as there are things you can do to slow the progress right down. Give up smoking if you have not already done so. Congrats on the exercise. If you can swim one to two times a day i am assuming you are probably mild?

Healthy eating is essential.

I have gone from stage 2 to stage 1 with healthy eating and exercise, plus i take cannabis oil so no need of medications.

Regarding catching other peoples infections, i always carry a face mask with me. In fact when i fly i put one on as i arrive at the airport and don't take it off until i am at my destination.

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Hi Merv, glad to hear from you...I had been wondering how you've been. Remember always what an inspiration you've been to us here. I check in with what's going on with everybody but don't have too much to say these days as my asthma comes and goes. I'll never forget all the support I got from you all on this sight when I was first diagnosed.

Best wishes your way,

Gail

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Hi Gail, good to hear from you. How are you doing?

Got another PFT next month so will be posting the results, still not taking any medication and have reduced my dosage to twice a day with no ill effects. Going for a swim this afternoon if the weather holds.

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I've found out that my asthma is mostly caused by allergies. The main thing is any form of sufites...which seems to be in everything that may need to be preserved. I've been making my own sauerkraut (it is supposed to help the gut flora) and eating very carefully. Luckily we live in the country, grow our own food and my hubby hunts every season for clean meat.

Do keep in touch, we all here like to know how you are doing.

Gail

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Morning Swerv - Strangly enough, I was about to message you with regards to the cannabis oil. I have read so much about it recently as my son is waiting tests to see if he has MS so I would be very interested in hearing how you make it or were you buy the oil.

Not too sure what FEV% is as I have yet to do that test - I take it that it is the Spirometer test that tells you that %?

I look forward to hearing from you again - many thanks for getting in touch - I very much appreciate hearing any advice.

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You will know your FEV% when you do your spirometry test. However, as you have not done the test yet, how they know you have COPD?

Yes, cannabis oil is an amazing alternative to big Pharma. I have not taken any medication since Dec 2015. Initially my FEv was 69%, started taking the oil in December 2015. PFT in May 2016 my FEV had increased to 78%. Have another PFT next month.

PM me for more details.

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I will PM you later for the details.

I was wondering why I have been diagnosed with COPD without further tests - I had an xray which showed I had hyper inflated lungs and given that I used to be a smoker (never was a big smoker but gave up years ago although when my Mum died 18 months ago I did start to smoke again but gave up after a couple of months) and also that I had a family history of COPD the Doctor just told me matter of factly that I had it and that I would end up needing oxygen even though I don't and never have suffered breathlessness. I was shown the door out with a prescription for a steroid pump which I was told that I would have to have for the rest of my life

I did turn around with tears in my eyes before I left and said that his bedside manner had a lot of room for improvement - he could see how shocked I was but this was just another day to him.

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Hi Moosemoose,

That is a very strange diagnosis and an uncaring GP. For a start COPD is not hereditary.

As others have stated, without a spirometry how could he diagnose COPD? I had a spirometry when first dx and was told i had chronic bronchitis with asthma. Later i had a CT scan which showed emphysema. I was given a steroid inhaler seretide and after 5 months i had ballooned 10kg and my skin was so thin i only had to knock against something and my skin would peel. Did my research and found that spiriva did the same thing but was non steroid so i changed. Now as you know i don't take anything other than cannabis oil.

To make a statement that you will need oxygen is also a ridiculous statement to make without a full diagnosis. As you do not suffer any breathlessness, exercise regularly the chances of you needing oxygen in the future is very slim. It will be interesting to see your FEV results as i have a feeling you are probably very mild especially as you do not suffer any breathlessness.

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How utterly nasty of the doctor; change doctors; COPD is very scary; my partner has it; gets breathless alot, probably more so on activity; he has an inhaler which he says doesnt really do much; but uses this thing what he calls an egg/another type of medication where you put capsules in it; he has all but given up smoking thank God; but this is another disease i dread, It seems there is no answer as to how long you can live with this? But that there are things you can do to slow down progress. Must be awful for you, especially seeing as what your brother went through, but you are not him; and looks like good advice offered here from people with other experiences; good luck xx

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Thank you - I have been in a daze since I was told that I had COPD

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Fev1 means forced expiratory volume in one second Moosemoose - all the air you can blow out in that second. The result is given in both a volume and a percentage which are set against the predicted normal range for your age, weight and gender.

But unless you've had a CT scan, Swerve is right below - how has your copd been diagnosed? It's usually initially through spirometry. When you have this done ask for a print out of the results for your records - then you can come back here, or phone the BLF helpline - 03000 030 555 - to talk them through.

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Thank you for that advice - I would never have thought to ask them to give me a print out. Everyone has been so kind on here. :-)

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If you havnt had a spirometry test how were you diagnosed

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I just had an xray after I had 3 chest infections this year. The results came back with hyperinflated lungs. With my history of smoking and a brother who died of COPD the Doctor just said it matter of factly and handed me a prescription for a steroid inhaler - I was so very shocked and upset as he didn't take time to explain anything to me. I went back to see the nurse yesterday who explained what happens next - I have a spirometer test on 14th Dec - worried sick.

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Then your GP has diagnosed on the basis of a probability which i don't think is very professional. Hyperinflated lungs isn't necessarily due to copd, though of course it could be. Let us know how you get on with the spirometry. Good luck :)

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I will do - thank you. :-)

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Andy, i have only had 3 x PFT's. First was in March 2015 and my FEV was 69%. I had another one on xmas day 2015 where my FEV was 84% however, that was a false reading as i was unaware that you could not take medication on the morning of the PFT. My last PFT was in May and my FEV was 78%. I have not had a test showing 74%.

I have another PFT booked on the 9th December 2016. Never asked for a print out of my results, but if there are doubters out there, i will ask for one.

Note: I still don't take any medication other than CO.

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Andy: My cost works out to $30 a week, about 1,000thb. Recently purchased a grow tent to grow my own as the outside temp is too hot for the plants. Should pay for itself within 2 years.

Not sure where the 74% came from, maybe i made a mistake when replying to someone? The last test was definitely 78% with an FEC of 76%.

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When in crowded situations, I use Cold andFlu Block round my nostrils beforehand, Vicks First Defence immediately after, then at the end of the day I rinse my nose and sinuses out with a saline solution and gargle with Corsodil or TCP solution. I wear gloves whenever possible too, wash my hands a lot, and avoid touching my face,door handles etc.

My previous husband died of heart failure caused by fighting COPD all the way but not looking after himself properly. I took the advice of all the good people on here, exercised more,ate more healthily, etc. My borderline moderate diagnosis hasn't changed since December 2014. I don't let my COPD limit me much, though I've decided not to hope to visit Manchu Pichu any more! I just do things a bit slower and keep taking the meds..

So take heart, Moosemoose, it needn't be the horrible death sentence you're anticipating at the moment. Take care. All the best, M

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Brilliant advice - I will have a shopping list as long as my arm soon! I work with chronically ill patients every day so the Cold and Flu Block is a great idea so too is the Firstt defense. Everyone has been so helpful on here. I am starting to see the light at the end of the tunnel. I was beside myself with worry earlier.

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All i can say is carry on as long as you can as for colds ect you can carch one in a shop supermarket any were if you think you will carch this that ect then all you are doing is going to work your self up over nothing you are still young as you like your job do it as long as you can or untill your manager says they thing you have to go or see if they have a nother job away from every one i have copd and i keepet going till i had to go into hospitail 3 times then the wife said no more .now my life is borring just sitting down doing not a lot and only doing thinks slowy or keep saying there is all ways tommorrow so my advice is carry on .

Good luck

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Good advice david12.

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Thank you for your sound advice - I do like my job and agree with you that I should just keep going. Many thanks for your message.

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Hello moosemoose

Welcome, everyone is very supportive on here.

I am sorry you lost your brother, you say he had chest problems from a baby.

You however are 61, and are normally healthy and fit.

Copd usually progresses very slowly, so at 61, with the right medication and a healthy lifestyle.......diet / exercise / not smoking, you should have many, many more years left.

You seem as if you think this illness will incapacitate you overnight, worrying about how to will carry on with work etc. ...it Won't !!

Be positive, you can do today, just what you were doing last week, living your life.

Don't let anxiety about things that haven't happened, ruin your life.

We are all here for you...this is a place where you can have... a Rant...Have a chat , get help and advice...and even have a good laugh ( one of life's best medicines )

xx

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Such kind words - thank you so much.

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As others have said there is NO reason to suppose YOU won't have a long and relatively healthy life.

Keep doing what you are doing and makes sure you keep up to date with flu jab. If you haven't had pneumonia jab I would suggest that as well.

Don't even consider at this point in giving up work. Work place has a responsibility to make any 'reasonable adjustments' to keep you in your job. In fact if you just give up work will have lots of problems in relation to benefits and pension!

Yes it can be shocking to hear diagnosis but keep swimming and eating well.

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Thank you so much for your words of encouragement. I am going to have a word with my Boss on Monday to see if he could arrange that I could work from home a couple of days a week. Fingers crossed he will consider it.

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Welcome Moosemoose. It's horrid to be given a copd diagnosis; I have been rememoring how I felt some 12 years ago, when I was first diagnosed at 60. As you, I was working full time in a demanding job. Plus I was commuting over 70 miles return trip. I loved my work but I was tired. The problems came , when I had two bad winters with bronchitis & my employers were unhappy with me having time off sick. I had to give up being a mental health social worker & focus more on the management side of my role; this meant I could work 2 days a week from home. This helped a lot. I eventually retired at 63. I have had my ups & downs, including lung cancer but I am better now than when I was first diagnosed. I was mild Copd & moderate asthma , when first diagnosed. Now, even though the top part of my lung was removed, I hover between low moderate to just severe. I can do most things but slowly. if you smoke stop, get a regime of medication to suit you. Carry on swimming & exercise a lot. I don't understand how you can be diagnosed with Copd, until you have spirometry. is this planned? if not ask for it. I am sorry about your brother but he had a weak chest from being a child . You don't & you don't know what path you will take. Treatment has changed for the better. nice to meet you, let us know how you get on.take care Margaret .

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Such encouraging words - thank you. It's good to know that after all you have been through your COPD has not got much worse. I have a spirometer test on the 14th Dec - I had one scheduled for Wednesday just past but I had a nasty chest infection so the nurse decided to book me another appointment when I am feeling more like my old self.

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Good morning and a hug for you Moosemoose . A very big welcome to this wonderful site. If you care to look through some peoples posts regarding COPD, you will soon see in black and white,that each one of us can try to do an awful lot to help ourselves. OK,it can be a lottery with the quality of care from our doctors but mainly, like velvet55 ,@david12 Ergendl and others have written, its a lifestyle change that will slow down the progression of the COPD. Until you have had your spirometry test results,you don't know for sure its COPD. please do keep us informed and feel free to ask for advice/suggestions or absolutely anything.

Take care.

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Thank you so much for your message - all the support has made me feel a lot more optimistic than I was yesterday.

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Although you nursed your brother i dont think you have been given much information on COPD by the sounds of it......Everyone is different and you could stay exactly as you are now and not deteriorate any further by taking the right medication and looking after yourself with the right support.

You have been through the trauma of losing a loved one so bound to be feeling scared of the future but many members on here live a normal life they just make adjustments in certain areas....

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Thanks for your words of encouragement - I wasn't given any information at all - I never for one minute even suspected that I had a problem with my lungs. Although I have had 3 chest infections this year, I honestly thought it was because my immune system was poor with the amount of stress I am under with my job and looking after my 89 yr old Dad. Everyone on here has been so wonderfully welcoming and helpful.

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I was diagnosed 3 years ago and im at the same stage as i was then....Its the waiting around thats the worst thing..

This site is great for support , information and encouragement plus the many terrible jokes that fly around on here ....Im sure when you have chatted to some people and know whats going on you will cope a lot better..

Be kind to yourself it sounds like you have been through the mill ....As my mam always said "" it will all come out in the wash "" x

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I am so glad to have found this site as it really has reassured me that I am not alone with this and that I am not going to drop dead tomorrow! Thanks for your message - lovely of you to take the time to reply.

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Hello moosemoose and welcome. There is always great advice on here from lovely people. I was in same position when I was first diagnosed - bottom dropped out of my world till I found this site. I'm sure you already feel better after reading the replies above, and I hope things will get better for you now xx

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I certainly do feel a lot better and more optimistic since hearing from so many caring people. It just felt like a death sentence but after hearing from people with a similar condition I feel I can rise to this challenge.

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Hi moosemoose, I'm so pleased that you've found this site. Not too long ago I was feeling just the same as you're feeling right now, but with all the advice and support that I received from the lovely people on here, it helped to turn things round for me. If there's anything at all that's bothering you, no matter how trivial it may seem, don't be afraid to ask for advice.

Apart from the good advice you'll get on here, there's some great breathing and lung exercises on Utube.

Wishing you well.

Pam XXX

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Yes, I have felt a lot lighter in my heart after having so many words of kindness and advice - I am so grateful that I have found this site. I will have a look at utube for the exercises - Many Thanks :-)

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Hi mooseMoose,.ll.! I am MOoskie! Who came first, the MOoskie or,the moose moose ? Hahah....dumb humour. Reading all the great answers for your concerns and just want to say I hope you are able to let go of the fear...and find a new doctor! Best wishes. MOoskie🙈

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Don't despair too much. I've had COPD for 12 years and consider myself in good health regardless od the illness. I am 63 and still swim, go to gym, take yoga and Pilates classes and go about daily as any non-COPD person does. I cannot run or do over strenuous activity but still keep fit. If I have a chest infection that makes it difficult for me to breathe I take steroids and antibiotics for 6 days. My medicine consists of 4 puffs a day of Sirdupla, 2 puffs a say of Spirovar and Mucrodyne capsules to stop the mucus from building up. I hope this makes you feel better Moosermoose.x

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Thank you for sending this message. I am just getting over a horrible chest infection and have felt that life is not worth living at times but now that the infection is clearing I am beginning to see that perhaps there is a normal life to be had. I guess what upset me the most was that some locum told me this news when I was feeling so poorly so I naturally thought that this was how my life was going to be from now on. I am starting to feel a bit better even though I have strained my back from coughing so much and am in quite a bit of pain with that, at least I can see that perhaps this COPD will not alter my life too much if I can stay infection free. I have appreciated this site so much though - everyone has been so supportive, for that, I am thankful.

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That's the way to go you controle your copd don't let it controle you x

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Don't giv up , over the last two years I've gone from doing 350 miles bike rides ,to now getting out of breath climbing up steps, I've not been diagnosed with cold but I've bin going back and forth the doctors for two years tried every inhaler for asthma, u keep telling them I'm getting worse, they don't listen ,the blue one used to work fine it does nothing now, and antibiotic n steroid do noting ,permanent wheeze and feeling if suffaction , it's driving me mad, u feel like stop taking the crap the doctors are giving me so I end up at hospital ,and someone might check me out. I think I know what u r going through. I'm scared. But u will fight. Take care .and be strong

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Moose moose think positive I know it's hard cause I've lost my mother father 2 brothers to emphysema and liver cancer and 1 sister to lung cancer. I've seen the effects of this disease very much so. But always remember there is someone worse off then you. I though there was no way I would ever get emphysema cause I didn't smoke but this wasn't so. But I'm not going to let it take over my life and you can do the same. Good luck

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