Scared just diagnosed with COPD

[Tracy02]

Hi all, I was diagnosed yesterday with COPD and have been prescribed an salmeterol inhaler. I have read all sorts on the internet including that only 1 in 20 people survive ten years after being diagnosed! I am only 49 and lost my mum last year with a combination of COPD and heart failure so I am really worried. I would be grateful for any advice

[mmzetor]

hi welcome to th group as long as you look after your self don't smoke ,eat health , take any medication , if you feel unwell get checked by gp in case you have a chest infection you can live for years , some members on here have had it 20/ 30 years , im 40 and was diagnosed 5 years ago

[mmzetor]

oh and don't goggle about it there are so many sites that are totally wrong on what they say and worry people sick ,

[Titchy52 in reply to mmzetor]

Well said mmeztor I think that's good advice and once you get over the shock Tracy you get on with life welcome to the site and I'm sorry for your loss best wishes x

[Snodgrass]

That is rubbish! Don't Google copd, I did at first for lack of knowledge and prepared to lie down and die. You are far more likely to die of old age than COPD. Don't smoke or if you smoke give up, eat healthily and exercise. iF you only have a blue inhaler your Copd is not severe. Better advice will come from others but I jumped in to try and stop the worry. Oh I should have said welcome we are all here for each other.

[123pops]

hi ya tracy ,

sounds like you are in a bit of a panic ?  you've not long lost your mom so are bound to feel worried , its only natural to do so ,

I scared myself " shitless " reaching the internet for any info that I could find about copd ,  NEVER AGAIN !

 you have joined the best site there is , right here , someone will always be able to help, n point you in the right direction ,

 take care , regards , carol x

[Tracy02]

I have a green inhaler with a blue short acting one for 'rescue' if needed. I don't smoke, gave up nearly five years ago and have only really suffered with shortness of breath first thing in the morning and this doesn't happen every morning. I do wheeze though and have a cough which again is usually worse in the morning. It didn't help that the Dr just said yesterday "it's COPD not asthma, I am going to prescribe a longer acting medication" and that was it. So I came home and googled, probably the wrong thing to do, I know, but I panicked 😀

[knitter in reply to Tracy02]

Hi Tracey....have you got the exact names of your two inhalers....is the blue one Ventolin( Salbutamol) or Serevent ( Salmeterol) 

It's just that the two work in different ways .take care.

[Tracy02 in reply to knitter]

Blue one is Salbutamol, but I was told not to use that unless I really need to and the longer acting one which I should use is Salmeterol

[Hidden]

Hi I will add my voice to the others,  don't google indiscriminately and if you do stick to recognised sites like the NHS or here.   I was diagnosed with mild copd around 6/7 years ago and I am still mild.   It rarely progresses quickly and a lot depends on what stage you are in and whether you have other serious health problems.  

Welcome to the site.   Stay with us and we will do our best to help and support you. x

[knitter]

Hi Tracey and welcome.....just to say if you live in the UK the British Lung Foundation have a helpline that you can ring during the working week ...they can answer any questions you may have.

Have you been shown how and when to use your medication and told what it is for...do you have a respiratory nurse that you can contact when you need. Many people on this site have found a pulmonary rehab course very helpful.

There is always someone here on this site....often even in the middle of the night..

Take care and best wishes.

[Tracy02 in reply to knitter]

Hi, no I haven't been told or shown anything, just told it's a salmeterol inhaler which is longer acting and to go back to the Dr in a month to see if the medication is ok with me. I haven't been told anything about a respiratory nurse, so perhaps we don't have one. 

[knitter in reply to Tracy02]

Hi Tracey again.....you have answered my question about your inhalers.

It's just that a friend of mine was prescribed Ventolin ( Salbutamol) and not shown how to use it when she was breathless ...so she coughed most of the medication out.

My local pharmacy is very helpful and can give advice on inhaler technique..shuts at Saturday lunchtime though.

[Tracy02 in reply to knitter]

I got told the blue (salbutamol)  is short acting and should only be used for rescue, so if I really need it. The other one, which I should use twice a day, every day is longer acting (salmeterol). Sorry if I confused you, I may go and ask my pharmacist later when I pick up my inhaler as it has had to be ordered in as salmeterol isn't one they stock as a regularly used one, apparently

[knitter in reply to Tracy02]

Hi Tracey...its me that's confusing you sorry. 

Quite a few people here use Seretide which is a combination inhaler containing Serevent with a steroid preventer element.

We both had the same idea of asking advice from your pharmacist....mine is excellent . Best wishes

[Tracy02]

Thank you, I honestly thought yesterday 'that was my lot', I may go back to the Dr as she did not say what stage I was at, just that the test showed my lungs at 79 years which I thought was terrible but she just laughed and said its impossible to say how it will progress and that was that!

[Sheilab123 in reply to Tracy02]

Tracy if it's any consolation lungs are designed to last 175 yrs, so you have many happy yrs ahead! Oh and welcome to our friendly little forum. As the others have said, no googling, though I think most of us did to start with! It does not paint a true picture. Take care and any questions just fire away, lots of knowledgeable people here. Xx

[diesel12]

Welcome, I was diagnosed in February and the nurse told me to keep away from Google, so of course I went on it and scared myself stupid lol! The guys on here are really knowledgeable and supportive so (do what I did) ask about any worries you have someone will know the answer. My respiratory nurse says she wouldn't expect to see any changes for years if you exercise and eat healthily and from what you've said it does sound as though it may be mild. Have you had a spirometry test?

They never seem to give much information when they tell you have COPD, maybe they really don't know. Anyway, make yourself at home and we look forward to hearing from you again xx

[Tracy02 in reply to diesel12]

Yes, I have had the test and the Dr showed me the graph of where is should be and where mine is, that's where I saw that my lungs are 79 years! She didn't say whether I had it mild or not just that I had to have a inhaler and that she couldn't tell me how progressive it will be

[peege in reply to Tracy02]

Hi, a very warm welcome to you.

I can't add much to the others good replies so will add my best wishes and hope you will stay here to learn as much as possible. You can put any questions up - nothing is daft enough & no one judges here! Put anything in the search bar top right. Look on YouTube for many clips of many helpful bits of information from how COPD affects lungs to how to take your particular inhalers or even exercises for COPD.

It's really important to take your preventive inhaler correctly. I discovered I'd been taking my Seretide wrongly for three years! No wonder my asthma got uncontrollable. Pharmacists are so helpful. Most of us use a 'spacer' with our inhalers, these ensure you get the optimim dose of the medication.

Hope you're feeling less afraid now. Best, Peege 

[Tracy02]

Thank you all for your kind responses, I will spend today doing a little more research on here and will also be speaking to the pharmacist later when I collect my inhaler. It is reassuring to know that there is help and advice out there and I am sure once I have gotten over this initial shock that I will kick back and not let it worry me too much 😀

[diesel12 in reply to Tracy02]

we all go through it and I for one still have off days but nothing has actually changed from before your diagnosis except you now know what it is and you'll learn what you can do to help yourself. Take care and don't worry too much xx

[Tracytrackerb]

Tracy can i ask what inhalers your on?  I am also new to the group and i have copd...but im now on 5 different inhalers..this is very worrying to me ..cheers Tracy.

[Tracy02 in reply to Tracytrackerb]

I only have one which is salmeterol that I have to take twice a day and they have left me with a salbutamol one which is only if I need it for 'rescue' the Dr said

[Tee1008]

Hi Tracy O2.  You have had some excellent replies, so I can only add a welcome to the forum and I am sure you will find it very helpful.

Nice to meet you.

Tee x

[Mandy6513]

I was 48 when i was diagnosed so understand that bit...as far as 1 in 20 surviving ten years im sure a lot of lot of members who have had it longer than that on here will reassure you .

Take all the advice and medication you get from your gp and dont be afraid to go back if things dont settle because thats what they are there for...Take good care of your own health by avoiding the obvious like cigarettes etc, 

Exercise and eat well and whatever you do dont think its the end because after 2 years ive just got back on the roads and driving again 

[SquirrelsHolt]

Hi there TraceyO2 and big welcome. I've got COPD and until I came across this site,I'll be honest, my life was just spent worrying. Just like you I received LOADS of advice from everyone here and I'm changing so many things now. I've started Pulmonary Rehab classes ( its OK to google that one!) and slowly but surely, my life is of a far better quality than it had been. The helpline for this site is also good. Doctors can often learn from us but don't be afraid to keep on asking for their help and make sure you get what is called, "rescue meds" so that you've got them at home if you should become poorly. Have a good weekend.

[clematis5932]

TraceyO2     Welcome, Please try not to worry. I was diagnosed with bronchial asthma when I was about 24 I am now  69  held down a full time job until I was 65 and looked after a family.  The only time I really knew I had it was when I got a chest infection I then had to take xtra meds.   I would find out all about copd but only from NHS sites ourselves or from The British Lung Foundation.  I think we owe it to ourselves to know about our health so that we can be aware if we are ill at any time.  Be aware of the condition that you have eat well,  exercise and walk if you can instead of always being in a car. In short do not let copd rule you, you be in charge of your own life.

[scorpiolass]

Hi Tracy, welcome to the site. I think the diagnosis is a shock and for a time we do get anxious about it. I see you have had excellent replies that I can't really add more to. Take care, Margaret x

[barbs47]

Hi Tracy please try not to worry. I have had COPD for over 20 years and still enjoy a very good quality of life. Please use this site to ask you questions cus you'll get answers from real people not so called experts who actually know nothing. There is another really good site COPD.net which is also written by people with our problems. Please stay away from google it will scare you to death. Also BLF help line is always good where you have qualified respiratory nurses who can help you. Ask away and take care x

[Catnip]

Advice -- _don't_ consult "Dr Google".  The horror stories will scare the living daylights out of you. 

I was first diagnosed about 30 years ago then like an idiot, carried on smoking for another 20 of those years (suffering for _that_ now!!).  Keep active, keep healthy and you will go on for years and years!!

[Tracy02]

Thanks all. I have decided to get a second opinion as I am a little worried about the lack of information my GP gave me when she told me on Friday that I had COPD, want to ensure meds are right etc. I have emailed the British Lung Foundation and will seek out some pulmonary rehab classes.

Feeling a little more positive today, thanks for all your comments 😀

[garshe]

Don't go by statistics Tracy. I was diagnosed 9yrs with Severe COPD. I am still at that stage. I gave up smoking immediately and also kept active. Think positive as I know people who have survived 20yrs or more