I'm confused, copd!? can you help ple... - Lung Conditions C...

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I'm confused, copd!? can you help please?

Breathe-73 profile image

Hi everyone, I was diagnosed over the phone with copd by my consultant in June. I have since read a few bits and pieces about copd and 1 thing I keep noticing is the fev1/fvc percentage is below 70% if copd, but I've since recieved the results via letter (attached) and mine is 73% I understand its close to 70 and I know I have the symptoms of copd since Dec 2019 (also had covid in Dec 2020).

I've had the ct scan almost 3 weeks ago and now waiting to see my consultant again on 1st September for the results, which is an agonising wait! But would just like to see what you fabulous people make of this please. I've literally so many questions for the consultant I don't think I'll have enough time in my appointment! 😄

Ps I'm trying extremely hard to stop the smoking, I have a deal with consultant I will by the time I see him! I'm getting there 🤗

26 Replies

Yes, i'm in the same situation. 78% fev1/fvc (should be 82) I also have all the symptions of an early copd and they told me it's almost copd but not yet. let's call it a stage 0 copd. I read you are a current smoker, you should stop smoking or copd will kill you. Sorry it is the way it is.

Breathe-73 profile image
Breathe-73 in reply to deaD3ath

Thank you for your reply, it's very confusing, it's all the waiting too to find out results, I had spirometry test at start of Feb and didn't get the results or know anything until June when the consultant first made contact, and now ct scan having to wait almost 3 months to know the results 😩

I really am trying to stop, I did vape also when I'm at work but stopped that the day he told me in June, strange how I just can't stop the dirty ciggies despite knowing what I'm doing to myself 😐

Tempo57 profile image
Tempo57 in reply to Breathe-73

Hi Breathe-73, You can stop smoking/vaping. Just have faith in yourself and your own determination. I am an ex-smoker as of last year. I actually believed that I was doomed to smoke forever as I had tried so many times to stop and only ever managed to quit for a few days at a time.

That was until I caught Covid-19. My GP, (nor myself), didn’t recognize it as Covid because Covid wasn’t thought to be around in the UK at the end of January 2020. My GP instead diagnosed me with COPD as she knew my smoking history.

It was however Covid according to my all my symptoms as well as the ones which were to stay with me. I was extremely ill, including breathless, coughing constantly day and night, lethargic, and I suffered with Long Covid until late last summer (2020), at which time I then tested positive for Covid again in late September 2020 but with very few symptoms this time….my antibodies clearly clobbered it! I still have no sense of smell but the coughing and breathlessness has gone thank goodness. I can now exercise without any issues. This forum taught me the importance of breathing properly and that has helped me no end!

However, my GP had told me in late January 2020 that I had possible COPD. I can understand why my GP thought I had COPD, given the Covid symptoms I was going through. She prescribed a nebulizer and put me on a short course of Prednisone. She performed a Spirometry test and I still have no idea how to understand the numbers, which is why I am interested in your comments regarding them. But….given the news I may have COPD and told in a stern voice by my young 30 something GP I was likely to die I quit smoking cold turkey. I can remember the first day as been a bit rough and wishing I could have a cigarette (I had plenty available at home), but I busied myself with chores. Since that day I have never looked back. This time it was so easy to quit. Perhaps been so poorly with Covid and all the coughing made it easier to quit, or perhaps my GP’s words made it easier because when someone says you’ll likely die, you listen…well I did! I now wonder why I ever smoked for all those years.

Although I didn’t suffer emotionally or have an increase in weight as many do, smoking a cigarette did cross my mind from time to time and to avoid any chance of returning to the old nasty habit I changed a few of my other habits, such as not drinking at home, going for a walk, having breakfast as soon as getting (up instead of three cups of tea and cigarettes to go with them), etc., etc. These new habits have stayed with me, hence having no desire to return to my old ways.

The bottom line is to know that you CAN do it. If I can, you can!

Good luck and let us know how you get on. Also, thank you for publishing your Spirometry numbers.

Best wishes, T57

Patk1 profile image
Patk1 in reply to Tempo57

Great advice and tips Tempo57.sounds like yr doing great x

Hi Breathe-73 and welcome to this great forum. I won’t comment on life with copd because I have bronchiectasis but there are lots of lovely people on here who are experienced in living with it. They are really supportive and friendly and will fill in the gaps which consultants leave us with when it comes to how to live your best life with this condition. Don’t be afraid to ask them anything.

Breathe-73 profile image
Breathe-73 in reply to Littlepom

Thank you so much for replying 😊 It's a little frustrating trying to find things out that you only know little about, and only know half the story about myself! It's the waiting for results that drives me crazy 🤪 😄

Littlepom profile image
Littlepom in reply to Breathe-73

Hopefully you will manage to give up smoking when you begin to get support from others with copd and it really hits you how important it is. Once you know what you are dealing with (copd) the numbers in the spirometry tests aren't really that important except for trying to prevent them from getting worse. The result of your ct scan will probably give you the most information. It is very frustrating for all of us not having face to face with our consultants. Hopefully this will get better.Remember you are the same person that you were before you had this diagnosis and copd did not come on over night. Knowing what you are coping with you can get the right drugs, a good lifestyle, diet, exercise and manage to stop smoking. Then you can have a good life.

Hi and welcome. Waiting for a follow up after tests is frustrating but the best thing you can do to help yourself in the meantime is to stop smoking. Many of us have succeeded in quitting and understand how hard it is especially when worrying. There is a Quit Support forum that you may find helpful to join too. Good luck.

Hi Breathe, in answer to your original post;

Its the DLCO measurement that is the gas exchange and that is the indicator in your case I should think (just personal experience, this was my main issue initially) and the MFEF measurement. Do give the blf Help line a call for further understanding prior to seeing your consultant.

blf.org.uk/support-for-you/...

So good to hear you are aiming to stop smoking. Best thing to do for yourself. Wishing you every success in becoming and remaining smoke free.

Good luck with your face to face consultation on 1st September, who I am sure will be able to explain things to you about any concerns you may have.

Best wishes BK

Hi you could try to call the department at respiratory and speak to the physio nurses they may be able to help you understand what you are dealing with

Breathe-73 profile image
Breathe-73 in reply to B0xermad

Hi, thank you for your comment 😊 I called my consultant's secretary but she just said ct scan results are not back yet and normally the consultant will talk to me about it. It always feels they can't wait to get you off the phone before they've even answered it so I feel pressured to ask 1 quick question and get off the phone (I think that's my anxiety issue 🙃) I guess I'll just wait to see consultant in Sept, not too long to go but a frustrating wait! 😩😄

Hi Breathe-73, An earlier answer, based on your record, needs elaboration and, being newly diagnosed and probably very frightened enough already, you may have limited or no knowledge of the illness and medical terms used.

The very important fact which needs to be taken into consideration is just why your MFEF, DVLO, and KCO readings appear lower than predicted. That fact is that you are a current smoker! It is all the tar from smoking tobacco coating your lungs that is depressing those readings. Your consultant will verify that fact to you. Quit smoking and in another year's time you will find that those readings will have recovered by a lot. Quitting is the best thing you can do for yourself and essential to slowing right down, the progression of the disease.

Stay as a member and read a little more to find out that in fact you have a mild condition (just), at the moment. With moderate and continuing exercise you may be surprised to find that your lung function might even get better. Even those that have a more severe condition still lead productive lives and of good quality. I have a lung function 28% measured in March 2019. Until Covid and subsequent shielding and at 69 years old I was still working full-time on my feet all day. Even skippering at 15 ton sailing yacht taking my family sailing, on the Norfolk Broads.

There is absolutely no reason why, if you quit smoking and look after yourself, you will ever get anywhere near as bad as me, because I did not get diagnosed until my lung function was 37%, Lung Cancer and nodules have since degraded that function. I hope you can look forward to a long happy life.

Tempo57 profile image
Tempo57 in reply to 2greys

Hi 2greys, Thank you for the informative reply above which you have made to Breathe-73. Your information is most helpful. All the best to you, T57

hypercat54 profile image
hypercat54 in reply to 2greys

Great answer 2greys. You are so knowledgeable and I agree totally with you. Keep on being amazing and putting out correct information.

Breathe-73 profile image
Breathe-73 in reply to 2greys

Thank you so much for this 2greys, extremely helpful and I will definitely take the advice on board. I'm trying my hardest to stop smoking, the vaping has completely stopped and I've made a deal with my consultant that I'd be stopped by September when he sees me next. I've bought myself some stop smoking lozenges and aiming for today being the last day I smoke! I know this hasn't helped me in the slightest, I'm also a painter & decorator (for at least the last 10 years) most of the doctors and my consultant have said this wouldn't have helped matters, I guess all the dust and fumes which I'd become very used to haven't helped.

I'm certainly not giving up yet, I've even taken up a 5k run challenge and trying to raise £500 for British Lung Foundation (already raised £200 😀) I've reduced the hours I work as I am self employed with my own little business for the last 7 years but that's taking its toll on me, I literally weigh (fluctuate between) 7.5 & 8 stone, consultant wants me to have a dexa scan as he thinks my bones look small on the xray and feels the burden of steroids I was given might have caused bone problems 🙄 (I'll worry about that once the scan is done!)

I literally feel like my life has been turned upside down these last 20 months, and to top it off I lost my 'best friend' my Mum 3 year ago in September and I feel so lost without her, having her by my side through this, sound's a little childish but we did everything together.

They've now diagnosed me also with severe depression and anxiety, (I've had counselling and cbt counselling) I've been given 100mg of sertraline a day to deal with this, I sleep for around 10 hours a day. My whole life just feels like it's fallen down a big hole with no way of getting it back out again, that's deep I know as I've been in a big hole before and returned but this all just feels extremely heavy to carry around. You have given me plenty of hope, I appreciate this so much, and can't thank you enough. ❤

2greys profile image
2greys in reply to Breathe-73

Try not to get the anxiety get the better of you. 1/ Anxiety can and does make you breathless, as you probably already know. 2/ Whilst it is a serious condition because there is no cure for it , yet, if you give up smoking it will probably never get anywhere near to my level, you will die with it not from it.

That said you must look after yourself, probably with more care than you are used to. Get referred to a Pulmonary Rehabilitation Course, where in one half you will be taught how to and what exercises you should be doing. The other half is devoted to educating you about the disease, how to cope with breathlessness, the various medications that you might need and diet.

ck101 profile image
ck101 in reply to 2greys

Inspiring 2 Greys👏

I see that you have read 2greys informative and positive post. Sometimes it’s hard to get out of anxiety states because so many things are coming to mind at the same time. Your stopping smoking and using good breathing exercises are possibly the most beneficial activities that you can spend time on at present It’s not easy but you clearly have the will so good luck and the energy to get there. My best wishes

Grace

Hi Breathe-73 . I guess we’ve all been in your situation at some stage, though our individual diagnoses may be different. I think one of the most important issues to understand is that a diagnosis is a mechanism to achieve the right treatment; in other words, it’s a means to an end, not the end itself. Consequently, having the right diagnosis, however disconcerting, is the first stage to controlling the illness; without the diagnosis, things might simply get worse and that is in no-one’s interest.

At first glance, things don’t look too bad at the moment. The normal range of FEV1/FVC is 0.8-1.2 (yes, some people have amazing lungs!), and you are only a little below that. And a good pair of lungs will last you till you’re 130, so there’s plenty of reserve capacity.

Just one more thing: my diagnosis has changed 3 times in 5 years, so it seems that this can be very fluid, particularly if you get regular tests, which I have been fortunate enough to have. So, stay safe and positive - you’re not alone!

Best wishes. I hope that hole is not as deep as it presently appears to be.

Debs_ALUK profile image
Debs_ALUKPartner

Hello Breathe-73

Welcome to the forum.

I am sorry to hear about what you have been through lately. A new diagnosis can be scary and you will find lots of help and information on here from our lovely members. If you feel you would benefit from a chat with one of our specialist nurse team and you live in the UK, you are very welcome to call us on 03000 030 555. You can ask as many questions as you wish, not just the one. We are here Mon- Fri 9am -5pm. There is also a wealth of information on our site to help inform you. I have added a link below for you.

blf.org.uk/support-for-you/...

Take care

Debs

My goodness I'm totally overwhelmed by all your support and positive comments, how absolutely fantastic of you all to give me your time explaining 😊 Thank you so much, I joined here in June after I was diagnosed, made a few posts but this is by far the most helpful I've had.

You have all literally been better than any GP I have spoken to!

I will keep following and reading (I may not post too much 😅) but so grateful for all your knowledge 🙏 Thank you ❤

Ah but doctors are doctors and only know the medical bits. We are the ones who live with lung disease and can tell you how it is.

You have had some great responses here and I can't add anything else except to recommend you join the Quit smoking site on here. Just type Quit into 'other communities' and it will come up.

There are also several mental health sites on here so have a look at those too. The busiest one is the Anxiety and Depression site.

Congratulations on quitting the cigs! It's gonna be one of the best decisions of your life, I promise. I quit 25 days ago when one doc said I probably have COPD with hyperinflated lungs and I made a pact with my mom to never touch cigarettes again. My mom smoked for 30 years, waking up at night from coughing and now she doesn't cough anymore. Don't let those cravings get you but if they do don't give up! Best wishes to you x

Firstly don’t worry, a lot of your results are very normal. Your DLCO is close to LLN. Take this as a final warning and stop smoking today, get help if needed, Chantix or whatever. If this is all making you anxious an SSRI will help. Been there !

Edit; I see you are taking Setraline, that’s the one I took, takes a month to kick in, I started on a half a tab and upped to 1.5 reducing back when I felt better. It worked very well for me.

Hi Breath-72. Don't get caught up on the numbers. And you & the drs. will meet in the middle soon. Write down all the questions you need to ask, & persuade him/her to let you get through them.

But you've plenty to be going on with until then. You Have COPD Because You Smoke. STOP SMOKING.

Don't "try" - do it. You're a drug addict. I know. It was one of the hardest things I've ever done (& I was a nurse!) and there's only one way to kick it. All the methods trick you into thinking you're doing it, I knew & loved them all. And never, ever trust it. Nicotine is a drug - even the vapes include it. You may long for a cigarette/cigar/pipe! for a long time. But it's out of you body in a relatively short time.

It Remains In Your Head.

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