Why

Why am I being told I am alright or will be alright because my lung function is 79 what difference does thst make I still get breathless sweaty acid refux struggle with "progressive" part of the disease, when I look at what people are going through it scares the life out of me...mental health team I know is doing their job...but telling me to come to terms with it ....I can't...my kids keep saying but you might not get worse...they don't want me to get worse...live for now creat memories.....I can't my head is so messed up.

[hypercat54]

Emily what you are forgetting is that many of the stories you are hearing come from those with much more severe levels of the illness. It doesn't mean you are ever going to end up there - why should you? Your children are right - if you lead a healthy lifestyle ie not smoking, eating well, exercising you should be able to hold it stable for many years. You are NOT going to go from a good lung function of 79% to half that in a year you know! If you ever get that low then you will probably be 120! Do you expect to live that long?

Acid reflux isn't necessarily anything to do with copd but when we get older it is common for other things to get a bit dodgy and slow down including our digestion. I take omexaprole coz I have this too and it stops it. It is not related to my copd though.

As for breathlessness at night and feeling sweaty this probably has other causes such as the hot weather, or maybe your bedroom is too warm or not ventilated enough? Or you could be triggered by dust mites or something. Do you wash all your bedding in at least 60% as this will kill them. Dust mites are common triggers. x

Ps have you been to PR (pulmunory rehabilitation) yet? Ask your doctor to refer you. This is a course over 10-12 weeks where you learn a lot more about lung disease and do exercises tailored to help. There should be a respiratory nurse to give talks and when I went there was also a psychologist. x

[Hidden in reply to hypercat54]

Sheets washed weekly ....I am not making sense I hope I don't deteriorate next year but I will deteriorate my emphysima will get worse its progressive...people on forum gave up smoking years ago and progressed to severe am I reading stories wrong...

My friend think diagnosed 7 years ago stopped smoking a year before...has gone from 81% test Jan to 52 in May...he said it's coz he didn't use inhaler properly????.. he has progresses...mikd to low end moderate that scares me ...yet I know he is still working going gym living his life....I can't coz my brain is telling me....look at all these people wearing mask at night...etc I do not want to end up like that x

[hypercat54 in reply to Hidden]

I have met no one who has progressed from 79% lung function to severe unless they were very young when they got copd. They can and do with other lung diseases such as PF and IPF, or bronchiecsis etc. but not copd/emphysema. If you are going to have lung disease then copd is far better than any other, so be grateful it is 'only' that. I am.

Do you wash your sheets at 60% or more? x

[Hidden in reply to hypercat54]

Yrs boil wash sheets ...with out cat scan how do I know what I have what's the other abbreviated lung disease you mention

[Hidden in reply to hypercat54]

What is ipf and the others you mention...you maje this sound so easy and it is not

[hypercat54 in reply to Hidden]

PF is pulmunory fibrosis and IPF is Idiopathetic pulmunory fibrosis. Look them up to see how horrible these are! x

[Hidden in reply to hypercat54]

I will do so and you are an amazing person my fear is overwhelming me ...actually don't want to look it up

Did PR when It was thought my copd was related to my asthma...PR Physio was brilliant with me..but when consultant said Feb highly unlikely copd I continued going thinking I just had asthms as didn't know what I had at the time my breathing was not too paid occasional breathlessness I took nothing in really

[Hidden in reply to hypercat54]

And I am not symptimless in fact I feel I use my blue inhaler too much

[hypercat54 in reply to Hidden]

It's your health anxiety which is the main problem here, so are you getting treatment for it? x

[Hidden in reply to hypercat54]

Yes I am getting treatment

[hypercat54 in reply to Hidden]

Good. then hopefully it will start helping you and you will realise your life is far from over. x

[Hidden in reply to hypercat54]

Consultant even said wasn't gonna give me cat scan as I would stress more if anything else was found that has struck with me since 30 may

[hypercat54 in reply to Hidden]

You have mild lung disease. You would only need scans if there was something unexplained in your diagnosis. The fact that he doesn't think you need one should be reassuring. x

[Hidden in reply to hypercat54]

No as he said not giving me one in case any thing else found as I was a basket case when he gave me diagnosis...I am moderate not mikd...mild moderate makes no difference it is progressive that's all I see

[Dolphin14]

Coming to terms with a chronic illness is very difficult.

It's good you are in therapy so you can unload these feeling.

Anxiety is pretty common with lung disease.

Easy for me to say but, you have to try and enjoy each day. Anxiety takes us to places where we live in the further and miss what's right in front of us.

[Hidden in reply to Dolphin14]

I won't come to terms with it or so I feel trying to make sense of a condition that is progressive is near impossible

[Dolphin14 in reply to Hidden]

Wish you the best of luck

[Hidden in reply to Dolphin14]

Thank you

[Jeff1943 in reply to Hidden]

Emily61, Hypercat has given you much good advice and reassurance here. Remember, we all have one progressive illness, it's called the ageing process, that slowly robs us of mobility, hearing, vision etc but everybody accepts and copes with it. Do remember that breathlessness is also a symptom of anxiety, maybe your anxiety is accentuating the copd symptom.

[Hidden in reply to Jeff1943]

I know we are age I don't mind that my eyes are rubbish my hearing is gone .....I have a disease that will leave me gasping and disabled living on oxygen....that's what I see

[Dolphin14 in reply to Hidden]

My sister had lung cancer. I understand to a certain extent.

Hopefully things won't progress as fast as you fear.

[Hidden in reply to Dolphin14]

Sorry to hear about your sister how old is she

[Dolphin14 in reply to Hidden]

She was 70 when she passed. Ty for asking.

[Hidden in reply to Dolphin14]

God bless and take care

[Hidden in reply to Jeff1943]

Not sure if anxiety asthma don't actually know