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only22togo profile image

Hi I was diagnosed with COPD in 2016 with a lung function of 47%, which was a huge shock to me. I missed my next test, so hand my second test in 2018 with a result of 40% function, then the following year the result was 36%. Then along came COVID 19 which stopped us all from having a yearly check up. Finally I have just this week had my function tested and to my horror I have gone from 36% in 2019 to only 22% lung function.

I thought COPD was a slow progressing disease, but I seem to breaking the rules and it is very scary. Since I was diagnosed I have gone from smoking 25 a day to 3 a day and vaping the rest, but after getting my result I have not had a single roll up , but now I have been told that I have also got to sop vaping as well so I can be assessed for oxygen therapy in 6 weeks time. I am so scared of how much longer I have to live, as right now I can't even get my self up the stairs or do not a lot else without gasping for air.

47 Replies

Hi and welcome. I did manage to stop smoking when first diagnosed in 2014 but my lung function continued to decline very quickly. At my last spirometry just over 2 years ago it was 22% and I suspect it to be lower than that now. The speed of decline is frightening and I understand how you feel. I wish you luck in quitting the ecigs in preparation for your oxygen assessment. As for life expectancy, no one can tell you how long that will be but do your best to eat healthily, avoid getting an infection and do gentle exercise (chair exercises if need be) if you can to keep some muscle tone.

only22togo profile image
only22togo in reply to CDPO16

Thank you, It has been easy to stop the 3 a day to vaping, but I just hope I can swop the vaping to patches , I am waiting for my first prescription , Ido try my best with exercises I have a exercise bike and small weights to build my arm muscles up, but lately the amount I do is declining so I hope with oxygen I can build it back up,

CDPO16 profile image
CDPO16 in reply to only22togo

Do what you can, a bit is better than nothing. I was assessed and prescribed ambulatory oxygen last summer. It made a difference and I was able to go for short walks in local parks and use my treadmill more.

Had a set back with a persistent flare up late last year and trying to build up again now. Let us know how you get on.

Damon1864 profile image
Damon1864Volunteer

Hello and welcome, it would be great if you could stop the vaping as well. Think of your health, and make things better for yourself . You will feel souvh better with ovyge. But they vant ho e you that unless you stop smoking and vaping

Please let us know how you get on have a good day and take care 😊 Bernadette and Jack 🐕 xxxxxx

only22togo profile image
only22togo in reply to Damon1864

I hope I can to, I thought vaping was ok, so was surprised, when they told me they won't give me oxygen until I stop and go to patches instead, but I will do this however hard it might be. Not being able to do a simple task is so frustrating and I get so angry at myself, at only 56 I have so much I want to do. Thank you for your kind words

Just want to say welcome. COPD is different for everyone but hopefully you’ll get all the help you need. It is frightening but you’re not alone and we’re here to chat with you and listen. Xxx

only22togo profile image
only22togo in reply to sassy59

Thank you, I can't believe how many of you have replied, I have felt lonely and scared, I am glad to have joined your group xx

Hon, if you're oxygen saturation reading is in the eighties or below everyday, then, that would be considered to be an emergency situation requiring immediate oxygen or bipap. Do you have a finger oximeter? If not, please buy one now and stop smoking and vaping asap!

Hi on day 6 of not smoking and waiting for a prescription of patches to help give up the vaping. I do have an oximeter, at rest its 96 but as soon as I try to do something it drops very quickly and if I push myself to carry on, so I don't feel useless it can as gone as low as 76. So I hope I can pass this assessment and some oxygen , I don't know what I have to do or how bad I need to be to get oxygen therapy, unfortunately I don't have an understanding GP.,

Are you under a respiratory team? It’s my understanding that a Gp can’t prescribe O2 it would be a respiratory consultant or nurse -once you are under them you will get far more support. Geoff was referred to them when my daughter complained to the Gp that he needed more than the anti biotics they were dishing out that didn’t give much relief

Welcome to the forum. There are people on here who are well past their sell by date, but still very much with us. Hope you feel able to follow COPO16's advice. Self help is very important for we lungies.

Cloudancer profile image
Cloudancer in reply to Alberta56

What a lovely post -I adore past the sell by date reference!!!!

Thanks I was wondering what user name to give myself, and thats what I came up with, very apt, I thought 😀

only22togo profile image
only22togo in reply to Alberta56

Thank you, and yes I will be taking all your advice at 56 I'm not ready for the knackers yard, there is so much I still want to do

only22togo profile image
only22togo in reply to Alberta56

Thank you , it's been lovely having so many replies I don't feel as lonely , and yes I will be taking any advice from all of you , I wish I joined years ago, you are a great help xx,

Alberta56 profile image
Alberta56 in reply to only22togo

I wished I'd joined long before I did. Good luck.

Hi this may seem a bit counter intuetive, but besides stop smoking/ vaping the other think that will help you is exercise. I know its scary to loose your breath when you are trying to do the simplist if things, so i would sugest you ask to do a pulmanery rehab class. It realy did change my life around. Im not sure if they are up and running again but it realy is worth doing especialy if you are using oxagen. I hope you get on top of your symptoms soon.

only22togo profile image
only22togo in reply to corriena

I did do a pulmanery rehab just before COVID descended upon us, it did help, and I still do as much as I can at home, but as my lungs get worse I am declining in how much I can do, I am hoping if they let me have oxygen I can build myself up to doing more, it's so frustrating not being able to do the things you want.

Thinking of you.There is some great advice on here from fellow lung buddies.

It's a scary place to be but please remember no one knows how long any of us will live.

I have survived many years longer than I should have ,take each day as it comes.

Thanks for your support and kind words, it means a lot to me, your right it is very scary, , I just hope I meet the requirements of this assessment to get oxygen, I have not been told what it is, just that I can expect an appointment in the next 6 weeks.

Welcome and I hope you are feeling less anxious after reading the above posts x

Yes thank you, you have all been lovely and welcoming , I wish I joined earlier its been so good to here so much support. x,

Yes lots of great support on here as well as laughs and chuckles x

Hi 22togo, my husband was diagnosed in 2004 and managed quite well for 12 years which I put down to giving up smoking , healthy eating and carrying on working . It was a physical job but he was self employed so was lucky enough to pick and choose when and how hard he worked and I truly believe the exercise kept him going In 2016 he deteriorated gave up work , was put on oxygen therapy and had to come to terms with changes in life style but five years on he is still here and still has some quality of life , he has hobbies he enjoys, albeit much less physical than previously , he adores our two dogs and enjoys time with them in the garden in summer and he enjoys time spent with our grandchildren aged between 25 and 4 when the pandemic allows . He has just enjoyed a lovely Christmas and still loves his food ! Geoff was 27% in 2016 and after having two flare ups that needed hospital treatment since he most definitely will be worse now . Geoff is 74 now diagnosed aged 57 ! From what I’ve researched life expectancy is not affected if the correct medication is prescribed and a healthy lifestyle and diet followed . It’s by no means an easy road but worrying won’t help at all , being positive and proactive will 😊. Good luck , plenty help always here for you x

Thank you , your husband has inspired me it really has, I am only 56 and will try to stay positive, it's just frustrating not being able to do all I used to do.,

I’m so glad you’ve taken heart from our experience 😊Unfortunately not being able to do what you used to is something everyone on here has to deal with but you will have good days and bad days the trick is to make the best use of and enjoy the good days . It’s not easy , hubby was devastated when he had to give up work and again a couple of years ago when he had to sell his van because it had been stood idle for two years but you adapt and get used to a different lifestyle . Bin the cigs including the E cig , get on the right meds , keep as active as you can - (Geoff makes his own breakfast and light lunch ever day and does little diy jobs on his good days ) learn some breathing exercises and techniques and try to stay strong and positive 💪😊 x

Lovely inspiring post x

Thank you 😊 x

Hi only22togo,

My own sats are very similar to yours, but I didn't give up smoking.

What I have found is that the breathlessness leads to panic, which in turn makes your breathing worse. A vicious cycle. Breathing exercises and moving helps most. I am unsure about oxygen saturation levels, as I've been told that even if your oxygen levels go into the 80s/70s, as long as they recover quickly to between 88 and 92 or above, you're ok.

I'm just 59 - a New Year's day baby, but another issue that could be worth looking at is the condition of your heart. Sometimes it is damage to the heart causing the breathlessness more than the lungs.

What cheers me up, to a point, is that our lungs are designed to last until we are 160 - my lung age is about 120 - so I still have time (I hope).

I hope all goes well for you, but being able to keep positive helps!

only22togo profile image
only22togo in reply to anng1814

Hi I agree with panicking making it worse, but I used to panic but not anymore, it is what it is and nothing change my condition, I try so very hard to stay positive, but some days it just gets to you, it is so very frustrating not being able to complete a simple task and having to stop and recover then try to finish the job when my sats drop as soon as I stert again, its just been so life changing these last 2 years , but like you said being positive does help.

anng1814 profile image
anng1814 in reply to only22togo

I couldn't agree more about getting frustrated. Everything seems to take so long! My mind is working on one level and my body at a slower pace!

anng1814 profile image
anng1814 in reply to only22togo

Another afterthought and one I feel GPs ignore - any ladies' lung function deteriorates, regardless of smoking, after the menopause!There have been a few inconclusive studies on this issue, but it would be interesting to know if there was a hormone that would counter-act the deterioration.

Hellodolly profile image
Hellodolly in reply to anng1814

Hi there -Everything deteriorates after the menopause sadly. There are oestrogen receptors all over the body which don’t get used properly when we have v low oestrogen and no progesterone.

But the outcomes on hormone replacement therapy are mixed, so it’s not a panacea either.

And men do get an andropause where their testosterone declines, so in some ways we are all in the same boat 🤣🤣

Skylark3 profile image
Skylark3 in reply to only22togo

Hi Only22togo, just wanted to confirm what others here have said, that exercise is just sooooo helpful. Before diagnosis of mild COPD, I was unable to climb a flight of stairs without having to stop to get my breath back. Following pulmonary rehab, I then stepped up the exercises (including the breathing exercises) so that I'm doing them DAILY, then after some months realised that I can now climb the stairs without having to stop!! Achievement!!! Also, I wanted to tell you that sucking Polo mints (sugar-free) helped me to give up smoking, rather like a baby needing a dummy in its mouth!

Stay positive. Wish you all the best XX

Hi only22togo,

As a secondary thought - have they given you a CT scan and analysed your lungs more closely?

Hi my only advise would be to take what support and information you will be given from here. Ask for another referral to pulmonary rehab ( follow their advice more rigidly) Stopping smoking and vaping is the only way to get some lung power back and prevent further damage.

Be as active as you can, don’t sit for too long. Keep your weight healthy.Perhaps if you push yourself a little you could regain some lung function to pre covid level because of your age I think it’s worth giving it all you’ve got to get an improvement before it’s too late?

Best wishes keep in touch. Cx

Hi. Your story is very similar to mine. I was diagnosed around 6 years ago (2015) with FEV of 49%. I did stop smoking immediately but took up vaping with a passion! It did not seem to adversely affect me in the beginning but as time passed my breathing got steadily worse. I had another spirometry test in 2019 and i was then at 30%. I was really devastated and realised that i had to stop the vaping which i did. (Im still as addicted to nicotine bit now ise nicorette minis). I went for another test 6 weeks later and i was at around 40 which reinforced my belief that vaping is not the answer if you suffer from emphysema . I also got to pulmonary rehab which was really good and i continue to do the exercises daily. (Its 15 mins out of my day and i think it also helps with the mental health aspects of COPD.) I now feel so much better without the vape and certainty im fitter than 3 years ago. You can ask at any chemist/pharmacy for help with the smoking/vaping. Good luck.

Hi and welcome to the forum. You have had a lot of advice but also personal experiences which I'm sure will have reaffirmed the need for positivity. One step at a time, but you can do it, and with the support from all your friends here focus on gaining control again. Good luck with your assessment xxx😊

I was also diagnosed in 2016, but I'm older and stopped smoking in 1996. My Fev1 lung function was at 29. That doesn't always tell the whole story. Everyone is not the same. First, stop all smoking or vaping. Everyone tells you so but it's necessary. I started inquiring about the Zephyr valve implants when I was diagnosed. which block off parts of the lungs that aren't getting rid of inhaled air. I qualified for and had that proceduce done, but my pulmonologist decided I would be a better candidate for the Spiration valve system. He implanted four valves and I improved quite a bit. My Fev1 went up to just 35 but I felt better than that implies ever since. I still huff and puff sometimes and I don't do marathons, but it was very helpful nonetheless, and my pulmonologist said I would probably live a long life. Unless I get hit by a bus tomorrow. 😃

noaccent profile image
noaccent in reply to Catfinger77

I think you sound a bit like me. History of Asthma and COPD. Possible heart failure. Not that good is it ? However, here's to tomorrow !

Catfinger77 profile image
Catfinger77 in reply to noaccent

Here's to tomorrow!

Why is everyone cheering for tomorrow ...???😥😥Poor Catfinger 77 ..😇

Albertdog profile image
Albertdog in reply to Albertdog

Sorry for being so fasicious- but I am lying here at four am on my NIV machine waiting to drop off. I was diagnosed with COPD around 2010 after 60 years of smoking. I stopped but I have been diagnosed with carbon retention - hence the NIV machine.At 85 years old I keep plodding along and hope for many years to come.

So keep trying - and avoid those buses...😇

noaccent profile image
noaccent in reply to Albertdog

Possibly because one could perhaps imagine that tomorrow might be better than today ?

The BLF shop have an exercise DVD specifically for building lung health and stamina. You could start with the sitting ones and progress to standing as you lungs slowly recover from years of toxins. Good luck

Kristicats profile image
Kristicats in reply to peege

I use the BLF excuses whoops exercise ( great prediction there 😭) it’s great because you can adapt it to your fitness level and increase what you can do slowly. Cx

My God! I thought at one time when I climbed the stairs and found it difficult to breath that my condition was par for the course. 'Smoking will kill you eventually.' You know the rattling on the smokers by the 'holier than thou' non smoking brigade. I understand and sympathise even though I am now healthy and breathing rather well. However, at my age78, other more distressing factors start to emerge. I shan't bore you with those factors, you'll find out yourself when you reach my age. All I can say in your case is the usual... Eat well, exercise well, and hang on. Regards and good luck.

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