Scared

[Andy-A]

Gp said my spirometers test was 50% and she didn’t know how I could have 95% o2 levels. She actually said she didn’t know how I was still functioning. I stopped smoking 6 months ago and do 5 miles a night on excessive bike and weights twice a week! I was positive about doing wat I could till my gpsaid that. Now I feel like there is no point

[mrsmummy]

Hello Andy-A. Do you have COPD? If so, your Doctor obviously doesn't know very much about it. Oxygen levels aren't an indicator of how serious COPD is. Some use it very early on and others never need it. Your result of 50% certainly does not mean you cannot work. Many on here work with a lot less. You have already stopped smoking and are taking lots of exercise so that is all good. Keep up the good work. Please don't worry.

Welcome to the forum.

[mrsmummy in reply to mrsmummy]

Check out this link for the BLF leaflets relating to COPD:

blf.org.uk/search/site/leaf...

[Andy-A in reply to mrsmummy]

Im waiting on a consultant just to check its copd. Go seems to have just assumed . I thought oxygen levels would be fairly indicative of copd and how you are? Forgive my ignorance.

[mrsmummy in reply to Andy-A]

Not at all. As I said some people never need oxygen and lots of others only need it for exercise or overnight. Your level of 50% is classed as 'moderate' and there are members here who are severe or very severe who continue to lead active, productive lives.

[MidnightCaller in reply to mrsmummy]

Hi Andy

Don’t let it worry you. You have done all the right things. When I first diagnosed with Emphysema ( COPD) in my 40’s it scared the living daylights out of me. They said my lung age was 79 years old.

But I changed my eating habits and increased my exercise a week. I was always a exercise person and I never smoked, so it was a lot easier for me.

I got my lung age down to 64 years of age now.

I removed cows milk which is the worst for COPD and added vitamins. I now find I don’t get out of breath.

Exercise I do 2 hours 3 times a week in the gym.

Just keep going and you will be ok

God bless You

[Susan1200 in reply to mrsmummy]

My Oxygen levels are mostly 85 ,is that dangerous?

[sak50 in reply to mrsmummy]

I agree entirely. My lung capacity is 39% and yet I never have oxygen levels below 95%. It doesn't stop you being prone to infection and severe respiratory distress. Keeping up with your medication, pulmonary rehab and any other exercise can keep you well and able to function well in life. Your respiratory nurses should be able to explain this. GPs are notoriously poorly informed if this not their specialism.

[stone-UK]

Hi

Glad she is not my GP, with 21% she would probably give me a spade. How can she be qualified to make such a judgemental statement. She should be encouraging you not putting you down. My sats can reach 94 seated.

You keep up with your exercises. And you will be around for a long time.

[hypercat54]

Hi I agree with the others. 50% puts you in the moderate category which is not fantastic but many on here have a lot less and are still leading a full life. You have many years yet so try and stop worrying and get on with your life. x

[Andy-A in reply to hypercat54]

Thank u all. I feel a little less alone. The gp may have been trying to be honest or stop me smoking again but hey that was stopped months ago. She managed to destroy my confidence in one chat. Just need to remember there is nothing I can’t do this week that I could do last week. Thank u all. Also interested in best excesses to try and help. Can I regain lung function through levels of fitness Or is it just stopping it getting worse?

[Ergendl in reply to Andy-A]

I've got moderate COPD and have managed to maintain my level of 69% over 3 years; my sp02 is usually between 98-100%. Others on here have improved theirs. Exercising to breathlessness seems to be the key. Plus healthy eating.

[casper99]

Hi Andy_A and welcome.

I had a similar experience with my respiratory nurse, scared the living daylights out of me when I was diagnosed, in 2012, when my fev1 dropped. Her total over reaction caused me terrible anxiety. It turned Out, I had a chest infection and didn't know.

Mrs Mummy is right, your GP obviously doesn't know the basics of COPD. Don't let her lack of knowledge get you down.

As you only stopped smoking a few months ago, you've yet to reap the benefits.

I stopped smoking and my fev1 was 68%. I didn't manage to quit smoking until 18 months later.

Last year, my fev1 was 83%.

The damage is done but, the lungs still clear the rubbish out.

Maybe you should try to see another docter at the practice, one that knows what they're on about. xx

[Kristicats in reply to casper99]

Wow casper99 that’s amazing that you managed to get your level up to 83% any tips ?

[casper99 in reply to Kristicats]

I didn't do anything special really, it must have just been the stopping smoking. I took a 30 minute walk 3 or 4 times a week too but not in winter. xx

[jackdup]

Wow, either there is more to it than what we are aware of or your doctor is very misinformed or uniformed regarding COPD. There are lots of people functioning very normally with 50% so wondering how you are still functioning is something you would expect from someone that knows nothing about COPD. Also your O2 sats being at 95% is not at all unusual especially if you are not exerting yourself and even then they can still stay close to that.

Definitely don't stop exercising as quitting smoking and exercising is the best two things you can do for COPD. I assume you were not using an inhaler before taking the spirometry as starting on an inhaler or inhalers can also raise that 50% to a higher number as well. Some people's lung function does go up with exercise over a period of time and some see it go up after stopping smoking and some when using an inhaler when they had not been before, so it is conceivable you could see it go up but even if it doesn't you can slow the progression down and in some cases even stop the progression for a period of time. There are lots of people who see their lung function remain stable for years.

You are right that you cannot not do anything last week that you still can't do this week so stay active and you can improve your exercise endurance and still have a good quality of life.

[2greys]

"She actually said she didn’t know how I was still functioning."

My response is "she does not know what she is talking about".

I have been working full-time with severe copd for the last two years since I was diagnosed and of course many years before that un-diagnosed. Keep up the exercising, after giving up smoking it is the next best thing you can do. It's not the end of your world, I promise. Sorry this is so short as I will be off to work soon, short on time and only just seen your post.

[Sparkywoo]

Andy stay positive, you are doing all the right things In terms of exercising, stopping smoking etc. You need to get a correct diagnosis and ask to see another Dr. Only You know how you feel, it’s like the dieter who loses 5 stone, feels great and then one daft person says something like “well when you lose a bit of weight” or “oh I thought you’d have lost a lot more than that” it deflates that person completely. Don’t let her derail you.

I spent years stressing about the what ifs of the disease. I took up meditation, changed my stress levels and my lung function improved by 10%

[Badbessie]

Just to add that test results can vary from day to day even hour to hour. So please do not think that it's the end of the world.

[Andy-A in reply to Badbessie]

Thank u all. I didn’t excersise for ten years. Now I’m starting to enjoy it. Never thought I’d say that. I do worry about over doing it. When I started I had to stop after half a mile. Now I can do five. My aim for six months is ten. I’ll be fine when seen a respiratory doc. Currently any little twinge and I think I’m dying

[Andy-A in reply to Badbessie]

Also some one mentioned milk. I drink two pints a day along with fruit juice. Always thought it was good for me?

[Badbessie in reply to Andy-A]

Andy they way COPD affects us is different from person to person. If a certain food or drink suits you then go for it. Like you I gradually built up my exercise tolerance. When I first started I could do 550m in 6 minutes now I can do 1100. As long as you do not desaturate whilst exercising then carry on.

[panda22]

Does your surgery have a respiratory nurse. They know more about copd than the doctors if I am having problems she said to tell reception that I must be seen straight away.

[Hidden]

My lung age was 100 when I was diagnosed! But I work two days a week, do an exercise class and am learning Tai chi. I feel fitter than I have in years. Try and find a BLF exercise class. They are brilliant.

[Andyhaler]

Hi Andy, as some others have said already you really dont need to worry. Your should maybe think about changing your GP or ask them to refer you to the respitory unit at your local hospital as they would reasure you that your doing all the right things. Youve given up smoking and are excersising regularly, theres no need to give up work, in fact it will help you to keep active. Please dont worry too much as anxiety will only make the problem worse.

[Dragonmum]

A GP is exactly that - a GENERAL practitioner; some have a pet complaint which they study quite intensively and about which they can be very knowledgeable. Sadly, I have never found one who knows the ins and outs of the many lung conditions which lurk under the COPD umbrella term. I can live with that, but when their ignorance undermines the patient's confidence then that is a step too far. It has often been said that GPs know less and less about more and more, and Consultants know more and more about less and less. Get a referral to someone who knows what they're talking about and find a GP who knows that they don't.

[Andy-A]

I have a consultant appointment in two weeks. It’s strange the gap told me generally there would be no pain. But if I’m doing Serbian things like driving I get slight twinges if I breath deeply. Had x Ray three months ago which they said was clear. It’s got me panicking that there is something else going on. It’s only what I would call discomfort. Any thoughts?

[Andy-A]

Oh and I’m using anoro which seems very good

[Andy-A]

I’m hoping it’s due to starting excersise after ten years of smoking and being lazy

[Hidden]

Hopefully you will be grand Andy-A ĺast year my test results said 17% this year I'm up to 20% but I'm coping so keep going but take care

[challny]

My GP originally told me that a calculation they can do showed I had the lungs of a 112-year-old man. Well, I'm smart enough to know that all men that old are dead, so that scared me. Let me add, that my GP is a very caring man, and I think he almost immediately realized that he had made a grave mistake to say that, since my anxiety levels were already through the roof. My last Fev1 test done by my pulmo just a few weeks ago was 71 percent. My 02 sats never fall below 96 percent, even during pulmo rehab classes. All that being said, today I feel like absolute crap. I took a 5-mile walk yesterday, but it wasn't pleasant. The last few weeks, however, have been really good. The good can vanish quickly, can't it? After my original diagnosis just over a year ago, my GP classified me as "mild." The pulmo he later referred me to classified it as "moderate." But she also said she thought it was possible to get my Fev1 to 80 percent. I don't know what to think anymore. I haven't smoked in decades, and I'm exercising pretty hard. I'll say one more thing. I take Xanax in the evening and it helps me relax so much and then sleep. My GP prescribed them, but my pulmo said she NEVER would because they interfere with REM sleep. I know Xanax has very bad reputation, but I swear nothing makes me feel better each day, and I'm on the typical inhalers. I can always tell when I'm not feeling well, because I write long posts.

[Kelda]

Dear Andy-A,

Do not get bogged down with theIr figures. It's so complicated and depends on so many different factors.

My last LF test said I had 33% but I put it down to me having a bad day. I have seen these figures go up by 7% over the course of a month. The oximetry :SatS are also unreliable.

A nurse once told me not to worry about the test result, you know how you feel and how much you can do. They can be counter- productive and make you depressed an afraid to do anything- BuT they can change in the course of a day.

If you do 5 miles every night and weights twice a week you seem to be doing ok. Put it out of your mind and carry on with what you're doing.

It's one of the reasons that I hate hospitals and all the test they make us do. I always feel down after an appointment.

You know your own body. Stress can be a huge part of illness. So carry exercising in moderation,be confident, breathe easy and smile.😊

Warm wishes K x

[Ninja83]

I’m afraid I would take your GPs comments with a pinch of salt, as their titles state, they are general practitioners not consultants and quite frankly this GP had no right to frighten you. You need to see a Respiratory Consultant who will review your results. I was also extremely worried about my spirometry results based on my GPS comments until I saw my Consultant who advised they’re fine based on my asthma etc. Spirometry results are not a reliable source as they’re based on how you’re feeling in that moment and can fluctuate greatly. Most Consultants will run a variety of tests to gain an overall picture of your lung function. In the meantime keep well.