Very new to all this.....

Hello Ann

I am 58 and was diagnosed about 20 months ago, but like you realised I had had COPD for a long time from my medical notes but, although I had been advised to stop smoking (smoked since I was 11) nobody actually explained things to me or mentioned COPD or what it was. My FEV1 on diagnosis was 22% but this has since improved (to 29%) as I stopped smoking last March and have undertaken an exercise programme to increase my fitness levels. Scared? Yes, so was I.

You say you have not had a ciggie since Thursday and that is excellent. Well done. It took me some time to stop after diagnosis. The cravings are awful and will continue for a while but you can beat them. Have you tried anything to help? Patches or similar? Some people find it helpful and I used the patches which helped to reduce cravings. My favourite trick though was to use my imagination, to visualise myself stood on a shore (my favourite place) with thick cigarette smoke behind me, waiting to choke me, and clean sea and air in front of me. This helped me not to \"turn back\". Different things work for different people and I hope you find a similar prop. Doing without the cigs should help your FEV1 to improve, as mine did.

Knowing what you are fighting helps. GPs tend to have little knowledge so make sure you get a referral to a COPD specialist clinic. Get all the info you can and then you can make sure you get all the help available. Many on this site will tell you how they have had to fight to get the right treatment.

You are still relatively fit and giving up smoking will drastically slow the disease. Now you have your diagnosis you can look forward to fighting. If you need further help please post again as there are many who use this site who have a lot of knowledge about the condition. You can also share the \"good bits\" to encourage others. We all need support and it is good to talk to people going through the same thing. I wish you luck. :goodluck:

Jacee

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Hello Jacee,

Thank you so much for taking time to reply to my post. I have enjoyed reading other posts by you too and recognise the fighter within you!

I still haven't had a cigarette! I am feeling proud of that -sheer willpower (and fear of what I now know!) but I wonder if I will start to cough more as lungs clean out, and if I do could this lead to more damage to my lungs?

Also I wondered when FEV1 improves how that happens? I thought that the damage done was irreversible so improvement was out of the question and that only halting the disease was possible?

You mention going to COPD clinic - I am seeing the respiratory 'consultant nurse' at my health centre. She has sat and explained my results - although I wish I'd made a note of them - and told me that after results from my blood tests I may need various other medicines - which she listed as steroids, different inhaler, strong antibiotics etc. It sounds as if she is well informed and knows what she's talking about - she even asked about my childhood 'chest' illnesses and the city I lived in and she has arranged the blood tests.

Thanks again Jacee and sorry for even more questions!!!

Ann

Hi Ann

Some of us cough more as we lose the cigarette habit but this is only the lungs clearing out the gunk and is a GOOD thing. Stopping smoking is the most important step you will take. My cough has now disappeared (unless I have a chest infection).

FEV1 gives a reading as to what percentage of our lung is working well (I think! Vanessa understands this better than me) and this can improve, though the damage to the lungs is permanent. So, the damage will not get better but there can be a slight improvement in your reading if you stop smoking, get regular exercise and take the correct medication. Hope that makes sense.

Now I need to try and be diplomatic - something I am not very good at!!!!!!!!!

Although some health centres/surgeries have nurses attached who say they specialise in COPD I have found that, after conducting research, I have more accurate knowledge than they do (told you I was not good at diplomatic). They can tend to over-prescribe antibiotics and steroids (which should only really be taken when there is a chest infection) and tend to give out their \"favourite\" inhalers, many of which are better for asthma then COPD. Most of us have found that we need to see the specialist nurse/consultant at the COPD clinic at our local hospital to get good advice and the right treatment. (For example, my son saw a respiratory specialist nurse at his surgery, was diagnosed as having moderate COPD, received lots of explanations and advice, was not given any medication and, when he asked for a second opinion (on my advice) was told he could not have one, then was told he may not have COPD and they will test again in 6 months - not good. Either he has it and should be receiving treatment or does not and should not have been frightened like that. He is now worried sick and in limbo for 6 months). So, my advice would be to press for a consultant appointment at your hospital COPD clinic.

I am unsure what the blood tests are for so cannot comment on them at this stage. Sorry if this sounds big-headed and bossy; I don't know it all but hope you can benefit from the gaps others have found. My advice would be - don't forget that knowledge is power. Look up the facts, look up the medicines you are given, read the pluses and minuses of each, see how they affect you (if they make you feel better/worse, if the side effects are worse than the treatment) and use your knowledge to argue for what works best for you.

Good luck Ann

Jacee

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Hi Ann,

Sorry to hear about your COPD diagnosis, but at least once we know 'the worst' we can start fighting back. You have already put the breaks on this disease to a large extent simply by giving up smoking. I know its hard at first - for me it felt almost like 'grieving' for them - but it does get easier eventually, and now I can't understand why I ever wanted to smoke in the first place. Two things to keep in mind if the 'urge' strikes:

1) Each time you smoke, carbon monoxide enters your blood cells and sits in the space usually reserved for oxygen - ie. it 'steals' vital oxygen from you - oxygen you just can't afford to lose when you have COPD.

2) On average, the remaining lifespan of a COPD'er who stops smoking is triple what it would be if they continued to smoke.

Anne do get help from your GP with the smoking if you haven't already. I used some fantastic tablets that killed the urge to smoke over the period of a couple of weeks. Really odd, my addiction just vanished! Can't remember the name of them now but will look it up and post it later.

Next on the agenda; Ann, do take the time to 'join' this web site properly. If you look you will see that at the bottom of our messages we have little boxes with things like 'pm' (private message) etc. In addition to then being able to privately message someone eg if you want advice re something you don't want the whole world to know about, or just to 'chat' in general, we can more importantly post links or suggest other web sites to each other, whereas in the general public area we can't, the moderators blank such info out - but they DO allow it in the 'private message' area. So join girl, join! :wink:

Next; FEV1 etc.

Firstly, it is correct that damage done to the lung tissue cannot be reversed (as of yet - researchers are now reversing severe emphysema in mice and rat lungs but it could be 10 - 20 years before that translates to a human cure). However, there are a number of things that contribute to your FEV1 besides actual permanent damage, and if these are put right, you will probably gain a degree of FEV1 back, and improve your general lung function and wellbeing. This will also contribute to lifespan too.

In my case , my FEV1 was 29% at diagnosis, but is now somewhere in the 40's - I say 'somewhere' because I'm hoping it will have improved a little more recently, but certainly I am 45% plus. However FEV1 is only a guide used for 'staging' the disease in general, and measuring decline / stability etc over time. So in my case for example, I am still classed as 'very severe', the same as someone with FEV1 in the 20's, because I have chronic respiratory failure and need supplemental oxygen. This is unusual though and is due to my also having something called Alpha 1 anti trypsin deficiency.

So, what are the other things that impact on your FEV1 and respiratory health in general? Well, briefly for now and you can ask for more detail if required;

1) Smoking - most people will see an improvement of a few % after a few months of giving up

2) The right meds - these can 'open up' your bronchial tubes to a degree and also fight any inflammation present when first diagnosed

3) Exercise- most of us have been quite ill for some time before diagnosis and we have been doing less and less as a result. This lack of exercise impacts directly on our breathing by letting our diaphragm weaken, and our diaphragm is a major player in breathing etc. Upper body weights (small dumbells) used regularly can improve this, along with general exercise.

4)Weight gain / loss. Either of these can have a big impact. Becoming underweight is a huge problem, often leaving COPD'ers too weak to breath effectively, and too tired to eat. This becomes a viscous circle.

Obesity, particularly in the abdominal area (even if you are slim elsewhere)

impacts on FEV1 as abdominal fat tissue presses up under the diaphragm and leaves less space for the diaphragm and lungs to f

hi ann, well done for giving up fags, stay positive and fight your cravings. I sadly lost my mum 10 months ago to this illness, my family never heard of C.O.P.D until she was diagnosed with it. The most important thing is never go back to fags. My mum and dad was both diagnosed with this illness, but sadly my mum died aged 57. My dad has to go to hospital every few months, but thankfully his hasnt got any worse. I honestly think that there isnt enough information about this illness. Wish you good health, Stay strong and positive. xxxkarenxxx :goodluck:

Thank you for your messages, advice and support!

I still have not had a cigarette.

Have just come downstairs to find a note from one of my children (he's 25) telling me how proud he is of me. I haven't told him yet why I have suddenly given up. His words made me think of 'karen12's' message and how awful it has been for her to have COPD in her life.

I have been for my blood tests - they are testing for Alpha 1 anti -trypsin deficiency and also allergen tests, as well as anaemia. Get the results on Sept 7th.

Jacee - the respiratory consultant nurse is also the nurse who runs the COPD clinic in a local hospital. I think she is going to be ok and I see her again when I get my blood tests.

Have just read Vanessa's exercise thread and I am impressed. I am slightly underweight but have been for years although recently people have commented on how thin I'm looking so I've been trying to eat small regular healthy meals - and eating lots of grapes too as ciggie replacements.

Hope that you all have a pleasant weekend,

Thanks again,

Ann

Hi Ann,

congrats on kicking the ciggies - you are doing really well! Like you, I gave up before letting my kids know why (my daughter was only 14 at the time). I just felt there was no way I could face them with it if I was still smoking, it would have been unforgivable. If I'm honest, that thought played a much bigger part in my quitting than any nicotine aids ever could!

I think you have a really good respiratory nurse / clinic. I say that because you have been tested for Alpha 1 so soon. Most people in the UK are never tested or they have to nag their Doc's to get one. It was over a year before I got one - I had repeatedly asked my GP about it only to be told that it was extremely rare and that there was no reason to have one. It is sad that once diagnosed there is no treatment for it - unless you can afford to move to another European country or to the USA. I believe thats why the NHS isn't keen to test for it - too many diagnosed Alphas could bring pressure to bear on gov't etc and it is a very expensive treatment. Anyhow I DO hope that your test will prove negative and will keep my fingers crossed for you. I will check on Sept 7th so do post your result (if you are ok with that). My children have not had their tests yet, I wanted them to have time to consider it properly. They have decided they do want the test - luckily neither of them smoke, but they will also need to avoid alcohol as the liver can be affected too.

I must go now - only meant to type a sentence or too as I'm about to get on the treadmill - I'm late today but daren't miss it. If you have weight loss do remember to get plenty of protein and exercise too - weights and walking would be ideal. The problem is that there is a tendency to lose muscle mass with COPD whether we are weight gainers or losers.

Lot of love , Vanessa :run:

Hi Ann

You are doing really well in avoiding cigarettes. Keep it up. Karen went through a lot and it does us good to remember that we are not the only ones affected.

Like Vanessa, I had to ask for Alpha 1 anti-trypsin testing. Luckily mine was negative. Your nurse sounds really good. In relation to your weight, many of us went down below our ideal weight before gaining. We are unsure if this is with taking steroids to counteract infections, taking less exercise or just part and parcel of the disease. Do try to eat healthily, it's important. Grapes are good. They are less calories than sweeties/chocolate and much better for your lungs than fags! They also help to replace the vitamin C that nicotine kills.

Vanessa's exercise is awesome isn't it? She is a major inspiration to me. Try to build some regular exercise into your day. As your lungs recover from the noxious cigarette fumes you will be surprised how much you can manage. Good luck at your next appointment.

Jacee

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i just wanted to say hello girls, i havent been on for a while, (working to hard). but i havent forgot about you, Hope you are all doing well, And your all in my thoughts everyday. talk to you soon, xxxkarenxxx :lol: