Hi I'm new here

[Daisytime]

It has been good to read all of your posts gleaning information as I went through them. Was diagnosed with COPD 8 years ago after a chest infection. Prescribed tiotropum and Ventolin inhalers and was told I had approximately 8 yrs left if I carried on smoking. I gave up smoking 6yrs later when I was diagnosed with PAD. I figured that I had pushed my luck after 50 yrs of smoking. Struggling with breathing during February this year. X-ray revealed that I had emphysema. I now use Duoresp Spiromax inhaler which has really helped. Learning as I go

[sassy59]

Welcome to the forum Daisytime, nice to meet you. Well done for stopping smoking as that’s not easy to do. Hope you can stay as well as possible. Take care. Xxxxx

[Daisytime in reply to sassy59]

Thanks, not sure how I did it but I do use a vape to compensate

[Piper21 in reply to Daisytime]

I gave it up by using a vape, eventually gave that up as well by reducing the nic content in the juice gradually. Either way you’ve done great to give it up and here’s wishing you stay well

[Daisytime in reply to Piper21]

Hi and thanks, Over the past 18 months I have managed to get down to a 6mg and dilute it with 0 nicotine and am hoping to give up vaping eventually.

[Piper21 in reply to Daisytime]

Well done you’ll get there. I must be honest I missed the vaping more than the ciggies. I did find however that it created a lot of mucous.

[Lizzric2 in reply to sassy59]

Welcome daisy. Hope we can all help you. With tips also with a bit fun in between to lighten our day.

[Lizzric2 in reply to Lizzric2]

Sorry sassy

[Daisytime in reply to Lizzric2]

Many thanks

[HungryHufflepuff]

Hello and welcome 😊 Congratulations on quitting smoking. I hope you're doing as well as can be ✨

[Daisytime in reply to HungryHufflepuff]

Thanks, I am not ready to go just yet. Trying to dodge the virus and improve fitness.

[Caspiana]

Welcome Daisy. It's lovely to meet you. xx 🌼🍀🌼🍃🌼🌱

[Daisytime in reply to Caspiana]

Likewise

[Ern007]

Hi, Welcome to the forum. First you say you had COPD them emphysema - Not being pedantic but you had 99% emphysema from the start.

I was diagnosed with emphysema years and years ago, not COPD which was not an entity then. it was COAD or something like that.

In those days i smoked and I was given 10 years to live - I stopped smoking a year or so after emphysema diagnosis and that helped more than any inhaler.

BTW IMO vaping is near as bad, I think that because of the liquid inhaled into the lung, not IMO the best of ideas - Well done stopping the smoking, next I hope the vaping...

Anyway after more than 25 years with emphysema - heart disease - I am still here and I doubt I would have been had I not stopped smoking.

Wishing you well.

[Daisytime in reply to Ern007]

Thank you for your reply Ern, I am working towards giving up the vape and am down to lowest level of nicotine. The hospital consultant diagnosed COPD in 2013. It was only this year for the first time I had a problem with my breathing. I had a CT scan to check for scarring on lungs! When I telephoned for the results I was told by receptionist notes said "no further action"! I was not sure what this meant so the next time I spoke to the doctor on another matter I asked him to clarify. It was then he told me that I had emphysema, I asked what stage am I and he replied stage 3-4. It was a bit of a shock to be honest.

I can't get my annual breathing test done due to Covid 19 so have bought an oximeter and a peak flow meter to monitor myself. My peak flow today was 300 and the oximeter read 86bpm and 96%Sp02. I do all my own housework and get out of breath going up hills or stairs . I don't understand how I can be stage 3-4 hence joining this forum. I think I might have to find a new doctor!

Sorry it is such a long reply

Many thanks

[Ern007 in reply to Daisytime]

Hi,

No matter a long answer. I am awaiting CT scan number 5 since lat August. Like you I have decent SP02 in the daytime - But they peak lower when asleep. as low as 80% at times.. You Peak Flow is not brilliant but not drastic - but you pulse like SP02 is fine...

How was your emphysema diagnosed at stage 3 or 4 which is severe or very severe stage 4 ?

Staged of COPD ( emphysema ) are diagnosed not just by imaging alone, but Lung Function and how a person functions.

Do you know what your FEV1 is?

Peak flow of 300 is hardly drastic and your SP02 stats good.

Some info may help, you FEV1 can be found by your Asthma Nurse, or chest clinic if referred,

____________________________________________________________________________________________

Very mild or Stage 1: Very mild emphysema with a FEV1 about 80 percent or more of normal.

Moderate or Stage 2: Moderate emphysema with a FEV1 between 50 and 80 percent of normal.

Severe or Stage 3: Severe emphysema with FEV1 between 30 and 50 percent of normal.

Very severe or Stage 4: Very severe emphysema with a lower FEV1 than Stage 3, or those with Stage 3 FEV1 and low blood oxygen levels.

Cheers

Ern

[Daisytime in reply to Ern007]

Hi Ern, I can only assume doctor looked at my ct scan results and previous lung function test results. From over a year ago. Had I not asked I would not have known. First ever flare up was in February when I was given steroids and antibiotics, three emergency packs in a row with little improvement.

I was not happy to keep taking steroid and asked the doc if I should be taking so many and asked for a review of my medication. That's when I was prescribed Duoresp inhaler which worked a treat.

My ankles do swell on occasions and I often wake up with cramp. I have no idea of my FEV1

Kind regards

[Ern007 in reply to Daisytime]

Hi Daisytime - Just been looking at my medical record on-line, strange a lot of data I can't find.

My Peak Flow was 248 in 2018, I could not have a spiro to determine my FEV1 as I have eye injections so spiro is contraindicated.

I have letters that show my FEV1 and copied to me from chest clinic.. I will look and post and see from chart what stage me COPD was - I am almost sure I am moderate.. I have ankle swelling also, but a poor indicator as other than COPD can cause that.

I like steroids for flare ups because they work - My inhalers are Fostair, Ventolin and Atrovent......

Duoresp inhaler is not unlike Fostair, has budesonide and formoterol . To be honest in a flare up I would not like just to have a steroid inhaler, but if it works for you - You know your body best..

I will post the last FEV1 on my letters to compare with the chart i posted..

keep safe

Ern

[Daisytime in reply to Ern007]

Thanks Ern, I am having a blood test tomorrow and will see if I can get my FEV1 from nurse. I am also taking a record of past 10 days peak flow and oximeter readings for them so they can compare. I have been told there is no chance of annual review of breathing whilst Covid 19 is around. Thanks for your advice.

[Hacienda]

Hi Daisy, Welcome to this Great Forum. Learning as you go, Which is the way we all Learned, more so on this Forum, with Help & Advice from everyone. I am stage 4 COPD, Emphysema. Stopped smoking years ago. With a Good exercise regime, that helped me so much for most of these past few Years. At Present, I am on my Oxygen 24/7, willing myself to recapture my ability to do some exercise as before, not Easy at the Moment, but I will get There. Stay Positive Hun, Stay Safe. C. XXX

[Daisytime in reply to Hacienda]

Good luck to you and thank you for your reply.

[Davyroy]

Hi, I read your post and the best thing you have done is stop the smoking. I went through a period of trying different inhalers and eventually sorted the medication that suited me. Doctors really do need your input regarding what suits you and what doesn't, we are all different. Heads up and smile ☺. David

[Daisytime in reply to Davyroy]

Thank you for your reply

[Izb1]

Hi Daisytime and welcome to the site. I have learned more from this site than any doctors as well as making friends and having a laugh along the way x

[Daisytime in reply to Izb1]

I certainly don't feel alone any more and have learned a lot. Many thanks

[Dedalus]

Hello and welcome Daisytime

[Daisytime in reply to Dedalus]

Hi and thank you for the warm welcome

[katieoxo60]

Welcome to the site, Emphysema is part of the COPD diagnosis. I am diagnosed with COPD / Asthma which really comes in the COAD or COLD in the old days. Like someone else mentioned on this post. Its all a matter of letters which signify you have airway disease, well done for giving up cigarettes keep up the good work. Stay well & safe and I am sure we will speak again soon.

[Daisytime in reply to katieoxo60]

Thanks Katie

[Damon1864 Volunteer]

Hi Daisy and welcome to the site, it's do nice to meet you. I hope you will continue to post as the people on here and all who run this wonderful site are really great . We are always there for each other and support each other. Have a lovely day and take care 😊 Bernadette xx xx

[Daisytime in reply to Damon1864]

Thanks Bernadette, I am most impressed so far and have a few more questions and brains to pick yet!

[HollyBoyd]

Just to say hi. I only joined 2 days ago and like you looking forward to hearing from the group, giving us information and support. Take care. Hollyboyd

[Daisytime in reply to HollyBoyd]

Hi Holly thanks for your reply, I have found it very informative so far and people are very friendly.