British Lung Foundation
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Cops at 32 60%

Hi guys new here, I'll start off by saying I'm 32, with partner and 3 children.

Told in October 2017 I have incurable lung desease which will continue to get worse no matter what I do.

When I asked what type the nurse/ doc couldn't elaborate

Just come back next year on your birthday for another lung function test. On foist air and ventolin but doesn't really help

Only 60%!working and worried about future and not being there for my kids.

Stopped smoking straight away and now eating more healthily

But playes on my mind every day

Will I live to see my 4 yr old grow to his 20s

21 Replies
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Hello Tommyowens85. If they have not identified your condition I would be asking serious questions. Was this a consultant or your GP? If your GP then ask to be referred to see a consultant. If it was a consultant then shame on him/her and go back and query it with your GP. All lung disease is serious but a fast decline is by no means inevitable.

Many on here have had lung conditions for many, many years. Some were diagnosed as children and are now pensioners. It does depend on what you have but also on what you do about it. Firstly, if you are a smoker please stop and avoid other people's smoke, traffic pollution, etc. Secondly, stay active as physical exercise helps to slow down progress of the disease.

Welcome to the forum. :)

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Hi, you have been treat pretty callously by your Doctor. Your young to have any lung disease, which needs to be looked into. He/she, should have told you exactly which lung disease you have and explained how to manage it.

I would go back to the Doctor, or even better, go see a different one and complain about the terrible way you have been given the diagnosis, with no proper information and it is worrying you sick.

Some lung diseases progress much slower than others and as Mrs Mummy said, many have had it from being a child and still live well into old age.

I personally, wouldn't ask to be seen by them again, their bedside manner stinks.

Well done for stopping smoking. xx

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Thanks for the congrats on stoping smoking was a no brainer really tho, didn't realise they can be that accurate with type and stuff but I guess not surprising as how I was treated. My wife wasn't happy at all with the lack of care and information given to me and I just tried to shrug it off as I don't like seeing her upset like everything is fine and still ok

Like it hasn't happened

She cried when I found out (brief phone call)

Broke down when I got answers to questions she wanted to know at app like percentages so on top of me being confused And scared I feel the more I find out and the more I accept what was going on I was hurting her further so needless to say I don't talk to her about it how I'm finding thing more difficult now

It's unfair to leave more to her like hoovering house top to bottom taking kids out stuff like that I feel that I can't let it affect my day to day with them otherwise she will know

So when she asked me are you ok when I'm struggling I just tell her I'm fine and try to hide it all but I know she knows it's just not a thing I want to discuss

Ignorance is bliss so to speak plus I have three children who I don't want to know unless absaloubtly nessacary 15,12 & 4

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Please try to share the problem with your wife - she may be a lot stronger than you think even though her initial reaction was tears. Many on here have great support from their partners, even end up laughing about things that would have had them running scared back in the day. You have to be open about things for all your sakes. I think a proper consult with someone who actually knows your condition, having seen it many times, should be top priority. Wish you all the luck in the world.

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I can't add more except to say you have the right to see your medical records. It's nonsense to withhold a diagnosis. Fostair is very good, finer particles to reach further in your airways. Get a demo on YouTube to check you're using it correctly. Do you use a spacer? Very important to deliver maximum dose (£8 in chemist).

Healthy weight, healthy diet, exercise and positivity all help hugely.

Tips: rinse & gargle after using inhalers.... Do your sums, will getting the NHS pre-paid prescription certificate save money. When I was paying for my prescriptions it was £35 monthly so the pre payment scheme saved loads. Read all the leaflets BLF supply to get a better understanding of lung conditions.

Good luck with everything. Peege

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Yes I use a spacer as pharmacy recommended it not respiratory nurse and am aware of rinsing thanks. Eating more healthy a little overweight not massively but eating better is well on the way to correcting that.

Excersise a bit more challenging but do try.

Frustrating as mates my age are playing Sunday league football and I struggle with stairs don't think they get it really

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There are one or two breathing tecniques to help with things like stairs . Pursed lip breathing for exertion, it's second nature to me now when going uphill or a long flight of stairs. Deep diaphragm breathing helps to remain calm in moments of stress, anxiety or when you need some calm. Demi's on YouTube.

Good about the spacer and rinsing.....all these things you pick up on the way 😃

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Thanks for the tips x

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Hello Tommyowens85 . I don't really understand how they can diagnose you with a disease but give no details. I think you need the facts about your condition. I am still shocked they didn't give any information. I hope you can get a proper diagnosis very soon. It is pretty important to be knowledgeable about what disease we have and how to control and live with it.

Try not to panic. Wishing you the best.

Cas xx 😊

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Sorry I was told copd with a cross over of asthma which was a 2% difference with an inhaler. But no explanation of what type. Can they tell me that? But yes no information just a minute phone call which I had to chase up and wait 3 days for. Think it was about two months after having the function test. Trying to get fact online, help from people like you but seems so young is rare so makes me thing as diagnosed young does that give me less time?

Thanks

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Hello Tommyowens85 .

I'm still a little confused. So, you seem to have COPD and asthma? There are many people here who have had COPD for a very long time and are relatively active. Disease is very unique to each of us. For some with a good diet and exercise the disease can be kept under control for as long time. And on the other hand for some it progresses faster. You are still young and you said your lung function is at 60%? That would put you at moderate.

See here for stages of COPD.

lunginstitute.com/blog/stag...

I don't know if you are a smoker, but if you are obviously you will have to consider stopping. Please try not to worry too much and also don't do too much googling. All you get by and large are the negative stories.

Sending best wishes.

Cas xx 🌻

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Right back at you

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Thanks everyone for the response, I had my lung function test and heard nothing back for ages somi called in asking for results, had to wait 3 days for a call back upon which was told simply you have lung desease which is incurable and get worse end of conversation no info no appointment nothing.

After processing what I had been told my wife encouraged me to make an appointment to find out more and wasn't happy I had been given no info or any advice on how to manage it.

I was told that it's only reviewed once a year usually around your birthday when asking for an appointment but I demanded on as I needed answers so I could hopefully understand better.

On appointment I had to ask all the questions and fish for answers (my wife made me take a list of questions)

Was just told I have coped with a cross over of asthma

60% without inhaler and 62% with inhaler

I asked if that means only 2% was asthma she told me it's not that simple

And again was told just come back next year to see how much more it has worsened as it will defiantly get worse and there is nothing I can do to stop it just help slow it a little bit by stopping smoking which I did straight away

Feel like I've been fobbed off

Maybe I will get another doctors opinion thanks

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The problem is that all GP's/ consultants will tell you different things, the consultant I saw told me that it wouldn't get worse as I no longer smoke . Complete rubbish when you read through the posts on here and see how many people are worse now than they used to be. That was supposed to be a ''specialist'' in lung problems. By all means try a different doctor but until they all read from the same hymn sheet, we will all be confused.

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Thank you, I was told it will get worse no matter what I do (eg stop smoking) I can only slow it down slightly so I guess although a blow it's truthful just wish they would take the time to explain exactly what's wrong and how to cope with it

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I think this is untrue. It may not get better but stopping smoking will help you stay stable. 😔

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Ah so you have copd. This isn't crossed with asthma but is a different illness and you can easily have one without the other. Asthma is reversible with meds and copd isn't. Copd is the umbrella term for Chronic Bronchitis (damage to your upper airways) and Emphysema (damage to your lower lungs). Most people will have both.

Although copd is progressive it doesn't usually progress quickly if you lead a healthy lifestyle and don't smoke so I expect you to have many more healthy years ahead of you. You will not only see your children grow up but your grandchildren too.

As you are so young to be diagnosed with this you need to ask for the genetic test which is only a simple blood test. Alpha 1 Deficiency is rare but should always be considered at your age. x

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Thanks for your reply and yes I asked for the test, the doc refused and said it's clear your lungs are just damaged. Was slightly confused about the asthma thing but inhalers make a 2% difference in lung capacity she called my condition a crossover of copd and asthma but said it's not as simple as that but hasn't explained any further.

I do hope I have many years left, I quit smoking straight away

But I have worsened considerably even before I was diagnosed and so much decline in only a year or so does not fill me with much confidence when I have so much to leave behind but, I will fight it!

I will ask for the test again by my doc or new one if I seek another opinion thanks

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Also perhaps get a referral to a pulmonary rehabilitation course and look up a logical Breatheasy group. 😊

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If you are in the UK check out the NICE guidelines. I am pretty certain that they state that if you are under a certain age (not sure but 35?) then you should be given the genetic test. It is only a simple blood test so I would quote this at your doctor.

You say you have worsened considerably even before you were diagnosed - what was your lung function then? If it is a result of a spirometry test then it is normal for it to vary by a few points at any given time. Mine is normally in the mid 70's but last time it was 80%. It could have just as easily been 70%.

There are many people on here who are severe (under 50%) and very severe (under 30%) and have been for many years. None of them are planning on going anywhere soon either! With a 60% lung function you are in the moderate range so try not to worry so much please. You are not going to go from this to 20% in a year or so you know, and you will probably never go anywhere near this low. x

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unfortunately it is very common being left with less then basic information i was told by a unsigned letter.(smoking related damage ) after 2 years suffering Tommy get the right medication but you must talk to your partner she is your strength she will know when your struggling. Dont stop doing things you love kids are great at keeping you active it may take you longer to do things but you get there. normally it would take me and my wife 3 days to decorate and re fit bedroom it tuck us 8 days but we did it together we walk as we can with the kids and dogs weather permitting. you have good days enjoy them and bad days push ya self a bit more. hope you get sorted on ya meds and embrace your wife and family mate good luck

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