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Just been diagnosed with COPD and im scared to death

Seani profile image
22 Replies

As the title suggests, ive just been diagnosed with COPD, im scared out of my wits, I was diagnosed by my doctor last Thursday 25th, and have a chest X-Ray and blood tests on Tuesday 6th.

I joined this site a couple of days ago and read through some stories to see how others are coping, im 46 now and smoked since I was 14, stupid I know, but back then it was just to be in with the crowd at school, and continued, anyhow after the doctor diagnosed me on the Thursday, I walked out of the surgery in shock and threw away what was left of my cigs, ive not smoked anything since, I have however taken to vaping to cure the itch for nicotine.

Just don't know what to think at the moment, my breathing is laboured.....although it seems to have got a little better since my last cig and taking up vaping, I seem to have good days and bad days, Im a truck driver and the good / bad days seems to mainly depend on which city or town im in, I was also given an inhaler by the doctor to get me by for now, some days im puffing on it loads, and other days I don't touch it at all, I seem to mainly need it when I lay down to go to sleep and can feel the tightness in my chest, I also seem to get out of puff quite quickly when having to deal with stairs etc.

Just to add to this, I did suffer with Asthma for quite a few years as a younger child for which I had a Ventolin inhaler, it wasn't severe to any point where I ended up in hospital, however I seemed to out grow that, needed the inhaler less and less until I reached the point where I just stopped getting repeat prescriptions from the doctor, the inhaler that im back on now is the same one, only now made by Ventolin, its the newer version.

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Seani
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22 Replies
sassy59 profile image
sassy59

Welcome Seani, this is a very caring forum and you will receive lots of helpful advice and support.

It is scary to be newly diagnosed with a lung disease but you have already given up smoking which is great. You now need to take good care of yourself, do as much exercise as you can and live life to the full.

Hope all goes well for you on the 6th. Take care xxxx

Damon1864 profile image
Damon1864Volunteer

Welcome Sean I we are a happy friendly bunch here. Try not to worry to much you did the right thing by giving up smoking. A good healthy diet and exercise will help you even more, try to keep a positive attitude. We all help each other on this site and have plenty of laughs along the way. Don't ever worry about posting that's what the site is for. You take care and have a good weekend.

😊 Bernadette xx

wheezyof profile image
wheezyof

Hello Seani,

Yes most of us were scared when we got diagnosed with lung disease. However, life does go on. Some changes may be needed, you may need to slow down a little. You've made the biggest and best change by giving up smoking.

Avoid dr google, you'll find a lot of sites full of doom and gloom, saying you have 5 years to live. Ignore them, look at the British Lung Foundation site. There you will find lots of sound information. Explore the BLF site and read some of the personal stories of how people are living well despite having lung disease.

Explore this site too. Lots of good help here.

Keep in touch xx

Seani profile image
Seani in reply to wheezyof

Thank you, that's unfortunately one of the first things I did when I got back from the Doctors, was to look it up on Dr Google, and pretty much sat back and discussed my departure from this earth in approx. 5 years time, all doom and gloom indeed, discovering this site has cheered me up a little, but im still worried which is why I thought id post tonight.

wheezyof profile image
wheezyof

Sean,

If the 5 years is true you are talking to an awful lot of ghosties and very dead people!!!

A lot of us are well passed the 5 year mark.

The true answer to how long you have left is like the answer to how long is a piece of string?

It will depend on a lot of factors, most of them are common sense really. Such as not smoking, eat healthily, moderate exercise, keep wrapped up in the cold, follow your doctor's advice ...

Again a lot of this you will find on here and the BLF website.

While on the BLF website look for a Breathe Easy Group near you and pop along.

Instead of just written messages you'll meet real people and they too can reassure you that Dr Google's 5 years is rubbish.

Meanwhile, you are worrying without knowing what is going on inside of you. After the blood tests and x-ray you may have an answer or you may be sent for a CT scan. In any event, you will soon know what you are battling. xx

O2Trees profile image
O2Trees

Terrifying at first Seani - I remember it well - I was scared out of my mind but Im still here functioning well nearly 19 years later. Ive always found google useful but have to say that Ive never ever seen that 5 year thing. And I can't think of anyone here that it's applied to either. You'll be ok - lots of good advice here and keep posting and reading and you'll pick up loads more. Good luck and nice to meet you :)

2greys profile image
2greys

Going to lots of Cities as a truck driver with the good days and bad days says one thing, "air pollution", which varies from one locality to another. As said above, forget Dr. Google. There are many who are bad enough to be on supplemental oxygen who go on for much longer than five years.

It is a very cruel progressive disease for which, as yet, there is no cure. On the brighter side there is much you can do to slow that progression right down. Quit smoking, eat a healthy diet, maintain a healthy BMI preferably towards the top end of the healthy band. Exercise is also high on the list. Stay away from sick people and get the flu and pneumonia jabs. Take personal hygiene seriously, wash your hands after touching public items and keep your hands away from your face. Take your medication as prescribed at regular intervals. If I have missed anything out, others will correct this.

hypercat54 profile image
hypercat54

Hi I was diagnosed mild 10 years ago and despite only packing in the ciggies last year am still mild fortunately. Much of it is luck, good lung genes as well as bad, lifestyle etc.

I have no intention of going anywhere soon nor do I ever expect to reach the more severe levels. There is a lot of life in you yet. x

Fleurbaby profile image
Fleurbaby

Sean, talk to admin! I must of been one of their most belligerent, obnoxious new members! They however, god bless them, didn't block me from this site, l however " slept on it" for a few nights! Finally, l am slowly coming to the realisation that what everyone says in response to your Q? is true.

I now have home help, pulmonary rehabilitation starting soon, at the moment I am using 1&2 kg weights to do exercises, use my walking frame to go grocery shopping, it takes me 30/40 mins to walk each way, it takes everyone else 10 mins maximum each way , it takes me on average 3 1/2 hrs minimum, but, it is getting out & about.

You now have an entirely NEW life now, it is changed forever, but the people you love haven't, just the new ones you are going to meet are more caring & genuine! Hang in their mate!

YOU ARE NOT ALONE!!

Ergendl profile image
Ergendl

Welcome to the site. You're clearly looking at your diagnosis as a wake up call. There's lots of good advice above. Try it out - it's certainly worked for me.

Spacecat1 profile image
Spacecat1

Have they checked your c02 levels. You may need a Niv mask for night time.mask over mouth and nose. You do get used to it. But it expels the 02 levels and you can in breath easier during the day. But you can use during the day. I find leaving central heating off over night helps my lungs cannot cope with getting up to a warm house. Usually hubby turns it off before he comes to bed but last night he forgot so bit of a struggle this morning. Hubby does like his heating hot. The thing doctor put on your finger you tend to have it done by a nurse at hospital I bought one off Amazon so once a week I check my readings. Sometimes they do go low usually with me when I have had a breathing problem but once I have sat down and calmed down my obs settle down and go back to sort of normal. Hubby stoped me reading to much on line to do with COPD because I started to worry I wouldn't be round long for my kids. But touch wood I was first diagnosed in 2009.admittedly I have got worse. But now have a good consultant. And now hoping next year to have valves. Ask questions with your doctor r consultant or respiratory nurse they do help.take care.x

Seani profile image
Seani in reply to Spacecat1

The doctor in my initial examination put this thing on my finger after I explained my symptoms and said my oxygen levels were OK, however, then proceeded to say she I have COPD when I told her I feel I can breathe fine, I just don't feel like im getting any oxygen into my system.

Hacienda profile image
Hacienda

Hi Sean & Welcome to our Great Forum. Your story is so familiar, except I'm not a Truck Driver. Great to stop the fags, I too gave up with the help of Vaping,(4 years now), Worked for me and many others. I had Lung Probs., for many years before Diagnosis of COPD in 2013, Was not mild, it was Emphysema /Hereditary ,level 4 Severe. Never Googled ever, I Trust my Consultant & All Respiratory nurses. I have had so far, 5 Courses of Pulmonary Rehab, Excellent for the Fitness you will need to do and all the Valued info about your Condition. I live a Great Life and am always Positive in all I do, (Self Preservation) . Not long had a 4 Valve Procedure, which is Great, I am on Oxygen, it is my way of life, doesn't stop me from being Happy and I am on the Transplant List. What will be will be, You have to maintain a positive attitude, Love Yourself, help & Advise others, But mainly get all the Knowledge you can for YOU. It Doesn't STOP, But YOU can make your Long Future Life a Good One. All my very Best Wishes Hun. Carolina XXX

Whitechinchilla profile image
Whitechinchilla

Welcome Sean. I too am new, only a few weeks old although I had my diagnosis 2 years ago.

You have come to the best place. I can tell you it will be the best thing you can do for yourself. Everyone who posts here understands.

I can’t necessarily offer sound advice but support for your situation that I can relate to and support you. Having people who understand is vital. Check in every day and you will find someone posts something that will uplift and encourage you.

Believe me the diagnosis is not the end. It’s just beginning of a new journey, and now you have others to support you.p

I just got the booklet for COPD from the British Lung Foundation, it is free, and very informative from the very best source.

I’m 76 and although I can’t beat this disease I refuse to let it beat me.

Look after yourself and stay positive.

Very best wishes.

peege profile image
peege

Hi, welcome to the BLF forum. How did your GP diagnose the copd? I believe it has to be by a spirometry test. They just may have got it wrong and it's the asthma worsening. I too had it as a child but it came back with a vengeance in my 50s and now have bronchiectasis too (there are sooo many lung diseases you'll discover on here)!

I can only comment on the asthma part of your recent history. In a way it's good news that you're young and can make adjustments to your life to become the healthiest you can be for you and your loved ones. You've already taken your first leap in quitting the cigs 👍👍👍👍. Healthy diet, healthy weight, regular exercise all help as does living in an unpolluted environment (that's a tough one when one has no choice).

Once you get sorted with the right medication for you - it can take a while as everyone is different - life won't seem so scary. I've read here that it can take a while for your lungs to recover from 35 years of smoking. Be very proud and wean yourself down from the vape things, maybe ask doc for prescription? There's a medication, Champix, which has helped many.

There are some useful breathing tecniques that help you get through those short of breath episodes, pursed lip breathing for one (see YouTube). Try it next time you want to reach for the ventolin - though as you're a lorry driver avoid the diesel fumes, they're you're worst enemy, tricky for you I know. For the asthma you'll probably need a 'preventer' inhaler as well as the ventolin 'rescue' one. I have to pull up my Buff (see Amazon), a scarf and use my hand to hold them up when confronted with traffic fumes, cig smoke etc, they bring on asthma straight away grrr

Good luck to you and I hope you're feeling a little encouraged now. P

Seani profile image
Seani in reply to peege

I had my vape with me when I went to see the doctor, as I was already on my way to quitting, however, upon hearing what she said to me, that was it for smoking for me, scared me that much, I will ween myself off it as im starting to believe the only thing that should be going into my lungs is air, however I asked her if it would be OK to vape, and her reply was, its much better than smoking.

I am beyond grateful too all of you for the information and experiences, im starting to feel a little better about the condition, obviously Dr Google just made matters a lot worse for me when I got home that evening.

sukee52 profile image
sukee52

Hi and welcome, I was diagnosed at 16 and now 50 years later am still around and though cough a lot and get breathless, have already out lived some of my non COPD friends. I find sleeping almost sitting upright (4 pillows) helps a lot, clearing the rubbish off my lungs in the morning and again as needed also helps. I have never smoked but am happy to say I am so lucky to be alive

Seani profile image
Seani in reply to sukee52

Funny enough, ive already discovered this too, thanks for the information though, sleeping upright or even slightly raised seems to help a lot, if I lay completely flat, I cant sleep at all, I also have to have a clearout of my lungs when I get up.

RibvanRey profile image
RibvanRey in reply to Seani

Pillows are much cheaper than fags too :-) I'm a 5 a night man. I do sometimes lower my habit to just 4 for my afternoon nap.

Now that you have found your way here and kicked the Google habit you will find the fear level will drop a lot. A look at You Tube for COPD exercises would be a good move and a diet sheet may help you too. Remember that BLF offices are open free phone and manned by nurses. If you need info sheets and can't find them then they will clue you in. Different food types can aggravate the condition. Drinking plenty of water can help move a lot of gunk.

With a generally fit body and healthy diet you probably won't die any sooner than you would have anyway. The shock at the price of filling your tank will probably do for you LOL.

Welcome aboard, Rib

Spacecat1 profile image
Spacecat1 in reply to sukee52

Yes the more pillows I have the better I do find it helps.

dimarx profile image
dimarx

Hello Seani,

I’m new on the site and yours is the first post I have read. Put your mind at rest! I am 71 and have had COPD all my life. When I was a child I had severe bronchitis or something and I was told as an adult that it was “under treated” and my lungs were damaged. Always infection there. Yes hard to walk up stairs and hills at times. It won’t go away but you will not fall off your perch. 😀 Best things to do: Swimming- for the breathing

Yoga- for the breathing (and so good for your body)

Deep breathing- you know where I’m going.

Listen to your doctor.

No smoking, good food and nothing wrong with the occasional cold beverage (in my view that is 👍)

lKeith profile image
lKeith

Serani

Hi & welcome to the forum,

We are not experts medically but have experience of the dreaded disease. It's good you have given up the cigs but try to give the vaping a miss as well it still makes you reliant on a smoking habit. We are all a bit worried when the first diagnosis comes at us but there are people on here who have had the problem for years. At your tender age there are treatments out there but you will need to research them. Try to eat well, keep fit and learn to live with your problem. Accepting the disease is part of coping with it.

IKeith

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