How long have I got?: Hi, I was just... - British Lung Foun...

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How long have I got?

Chicagorda
Chicagorda

Hi, I was just diagnosed with COPD last month and have been trying to research the condition. My doctor was not helpful and just told me this was the result of my chest xray. I had to make an appointment for a spirometry test after research. I am still in shock and feel out of control. I am on beclometasone steroid inhaler which seems to help but I still cannot breathe out fully and am wheezy. I practice yoga and deep breathing exercises. I am aware of the pulmonary rehabilitation programme in my area and plan to sign up as soon as I get back from holiday, but what I really want to know is can anyone (I mean the medical community) give me an accurate prognosis and tell me truthfully how this disease will progress. What are the timescales for the deterioration of this disease, what are the stats? I know I need to look after myself and be physically active which I always have been but does anyone know who can give an honest answer to this most important of questions?

39 Replies
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This is a commonly asked question. Sadly there is no answer. COPD affects us all so differently! On diagnosis I gave up smoking, shorted out a good diet, have taken my medications religiously and started exercising. My specialist tells me I should have a normal lifespan. The picture is not totally black if you make changes. My advice to you is keep away from "Dr Google" it will only make any anxiety worse. This group will support you but the question you ask does not have an answer. Diagnosis is a shock to everyone and can lead to great anxiety. Please there is no such thing as a daft question. All of us have been in the situation you are in now. Hopefully we can help you through this.

Thank you for your quick reply and for sharing your experience I know in my heart there is not a definitive answer, just wanted to know if anyone had any more light to shed on the problem. I will be monitoring carefully once I have my first spyrometry test done. I am so grateful to have found this site....

Hidden
Hidden
in reply to Chicagorda

I was diagnosed2 days ago and I am thinking the same as you, like its a sentence.

How long is a piece of string? No one can give you that answer coz there are too many variables. Very important is at what stage you are diagnosed. If it is early then you probably wouldn't progress much and would live to a ripe and healthy old age.

If it is in the severe stages then the outlook is a a lot less rosy. Having said that there are loads on here in the severe and very severe stages who have been there for many years and none of them plan on going anywhere very soon.

You need to find out what stage you are at and your lung function (FEV1). x

Thank you for coming back to me. I hope to get a test done as soon as I am back from holiday. It’s good to know there is a community there for when day are bleak.

Damon1864
Damon1864Volunteer

Hi and welcome, to be honest no one can say for definitely how it will progress, but you are doing all of the right things to help you. Good eating and exercise will help most of all, but having a positive attitude helps too. I hope this helps you and that you keep posting, take care.

😊 Bernadette xx

Thank you. It is so nice to know there are people out there helping us to come to terms with this problem and to overcome it. I reallly appreciate the support

Damon1864
Damon1864Volunteer
in reply to Chicagorda

We will always support each other we are like a special family always there for each other. There is always someone to chat to, and please feel free to rant and rave if ever you feel the need to. We are here no matter what the reason. You take care,.

😊 Bernadette xx

Just add a bit more - I was diagnosed mild 10 years ago and am still mild despite only giving up smoking 1 year ago. However I know I am lucky and others might have progressed more quickly. My doctor once told me old age would get me well before copd did! :) x

HiddenThis reply has been deleted
hypercat54
hypercat54
in reply to Hidden

I am not getting into another debate with you about this RedSox but the only thing I will say is that lung health depends on many factors, including luck. I must have some good lung genes as well as bad. This would help explain why we are all so individual.

You will get all the answers you need I was the same as you and I went to rehab and I had hour of rehab and hour of education which was most valuable helps you understand

My mother has been living with COPD for the past 5 years. She gave up smoking when she was diagnosed and the COPD hasn't got any worse. I'm not a medical professional so these are just my own views based on my mother's condition. She was only diagnosed with mild COPD so I think you should maybe go back to your doctor surgery but see a different doctor and ask him/her how severe your COPD is. My mother gets breathless from time to time but her inhalers help but her doctor certainly hasn't mentioned anything about "how long she's got left".

My husband had copd and he last 10 years but my partner died in January for emforcima he last four years it really always depends on people

Hidden
Hidden
in reply to Purton

That’s correct. As much as we want to know our future everyone’s copd will take its own unpredictable course. Doesn’t make one feel real secure, but then again many things in life are not guaranteed. I’m not thrilled, however I must assume I won’t live much longer. My Dr last week when I got my flu shot told me if I were to get a severe flu I’d die. I go to a cardiologist, rheumatologist, GP, pulmonologist. I tell my Drs lay the facts out and don’t baby me. I’d rather know. I’ve filled out a directive just in case. I guess I feel no one lives forever I don’t have a death wish. I just feel with palliative care and hospice I’ll manage. Being kept comfortable is my concern. I’ve had ten yrs to think about my alpha one lung condition. It has progressed fairly quickly the last 8 yrs. so I feel forced to accept reality. Also I have a strong faith that gives me strength to cope.

Please read the article posted by roey123 an hour ago it’s very comprehensive . Also you will get an idea on here re the condition and how it affects people.

BTW COPD can only be diagnosed to be sure by a spirometry test.

Felt the same way when diagnosed, doctors and nurses don't seem to get that we a bit of assurance, fortunately I found this site...You'll find most answers though not definitive answers because we all react differently to this disease.You seem to be doing the right things and I'd keep that up.

Prognosis vary but for the best part it shouldn't change your life too much if you change your lifestyle to suit.

There's always someone on this site to at least reassure and talk to.

Don't fret. It doesn't help.

Biggish change in life.

Hope you can get through this. We did.🙂

Hi I find that taking allergy pills helps and a nebuliser, I try to walk every day but am limited to how far.swimming helps greatly but in the winter the cold is agony. You will find your own way of doing things, to answer your question I found out everything from good old google, good luck to you

Nobody can tell you how long you have got, I was first diagnosed at age 40 and that was almost 29 years ago and I am still here. Yes it has got slowly worse over the years, a lot of that down to me not stopping smoking when I could and should have. So please don't think of it as a death sentence as its not. A lot of us go on to live well into old age. If you can take a pulmonary class then do so as it will greatly help you. Other than that do not smoke, eat healthily and get as much exercise as you can even if its only walking and you will be ok

Hi Chicagorda

i was diagnosed in mid August and like you went into complete shock and had a melt down as I was hardly given any information by the doctors. Anyway I went onto Google to find out more but in all honestly I found that it just made things worse so have promised myself not to do that again as it made me too anxious.

Like you I have tried to get the answer you have asked but clearly there is no defined answer so I have made the decision to lose 3 stone, swim every other day ( which has already made a huge difference) and increase my walking so I do 10,000 steps a day.

If anyone else has other suggestions they would be greatly appreciated. This web site has lifted my spirits greatly so will be looking regularly.

Good luck to all

Hi, Chica, I was diagnosed over 40 years ago with COPD at the age of 40 , I’m nearly 82 now. If you smoke stop now. Never go into denial with you disease, continue wth your prescribed medicine unless you find them unsuitable then go back to your GP.

You excercise, that’s good it opens the airways. COPD can be controlled you’ll have good and bad times with it but you’ll always have it so calm down and learn to live with it we’re all in the same boat on this forum just remember you could have something a lot worse ( I hope you don’t). Good luck and good health to you

HiddenThis reply has been deleted
garibaldon
garibaldon
in reply to Hidden

I bear your original comments in mind. I’m not due to see my Asthma nurse until the middle part of next year. Unless I visit my GP before, either way I’ll find out for sure then and let you know. The only thing I know for sure is asbestos on my lung

the pulmanory rehab is hard work 6 weeks 2 days a week i tried twice but couldnt do it ,go for a look round first its informative but hard xxx

Their gonna automatically tell you 5 years DON'T listen it's a standard remark from all Drs

Copd, look up idiopathic pulmonary fibrosis should make you feel a lot better about your future with COPD , when I thought I had cancer I was happy with my I P F diagnosis , good luck,

Greetings

I was told that I had emphysema when I was 37. I'm now 71 and still here. :)

Catnip

Chicagorda

Hi, Unfortunately there is no time line to correctly determine when the disease will terminate your existence. There is no science that will help to calculate a date.

Each person is different to another, it depends on how fir you are as of now, what exercises you do to keep fit don't smoke and take working as easy as you can .

Don't push yourself, keep away fro dust asbestos, MDF dust etc you could go on to a ripe old age but youhave to work around/with it. Trying to things that you used to do that required effort, now accept you can no longer do them.

I know from experience it is difficult but the more you fight it the more anxious you get and the symptoms worsen.

Depressing I know but think of yourself.

IKeith

Chicagorda
Chicagorda
in reply to lKeith

Good advice. I am storing it all up unti I can get I can get in front of a health professional when I get back home. Thank you lKeith

There is no answer to this . Enjoy your holiday and the RESP team afterwards. Make the most of life enjoy your hobbies..

Dan

COPD is not a death sentence, in most cases, with proper meds and healthy life-style. I look at my copd in this way: I will certainly die WITH copd, but more than likely not FROM copd. There are many meds and healthy eating and exercise that will help you. Live healthy and live long, and stay tuned to this group support. (google is not the place to be in most cases) God Bless and enjoy life - that is the key to longevity. Florida 47

Thank you for that. It’s a good mantra to live by...I will post more once I have a second opinion including a spirometry test. I am lucky that we still have connections in France after living there for 20 years and I will be seeing a specialist there for a raft of tests and an opinion once we get back from our holiday next month. I wish you well too. Chicagorda

How long is a piece of string

Three days late sorry. I have had COPD for 20 years or so. I stopped smoking and eat well and am still here aged 73. I also have Angina, AFIB and other complaints. You ca never tell but being you are on holiday suggest that you are not at deaths door so to speak. Seriously forget stat's and forger Dr Google, both will make you feel more ill. You say you have problems breathing out, have you got a reliever inhaler? Some use Salbutamol, I prefer Atrovent. Don't smoke and keep to a decent weight and you can live an almost normal life. Good luck and don't worry...

Hi Chicagorda....I offer you complete support.... when I found out I had chronic asthma my pulmonologist talked with me saying eventually it will lead to COPD. My FEVI 79 to be honest the other number was 80 from Spirometry tests. Next time I test I will get a print out. I feel my asthma has worsened. I get tired more...I get out of breath. I take my rescue inhaler more....lots more. I wake in middle of night in panic. My asthma is worse at night. Please try to understand you are not alone. These people in this group are awesome!!! I read their posts alot...You will find comfort and good information. I will be taking a Spirometry test in six months I believe. I try to practice my breathing excercizes, walk, anything I can do to help ease anxiety. Does anyone take this supplement called NAC ......I've taken it for last three years. I feel like it keeps me from getting infections , but I also take vitamin C, and vitamin D with magnesium. Maybe it will help you to know lots of people are finding out COPD diagnosis now. Doctors have become more aware. I still have anxiety over all of this....yet living the best you can is always a positive road to travel. Sometimes we fail to do that but keep going strong....I don't post so much...yet I do read people's stories and they are inspiring!!!! Good luck to you. You and everyone on here are in my thoughts and prayers.

Thank yu for sharing marie love. Still on holiday, but will be getting a spirometry test when i get back and finding my local rehab centre.....one day at a time, as the saying goes, stay positive, it sounds like you are doing everything you can....

I was diagnosed with moderate emphysema over 20 years ago. I use oxygen now, I still work, go places and play with my grandson. I'm married and still enjoy all the things that go with it. All I can say is "EXERCISE". That seems to be the best way to fight this disease.

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