COPD - I promise this will be my last question for a while.

[puddy68]

I promise this will be my last question for a while [!]. I was just wondering, as COPD is a progressive disease, how exercise [eg/ pulmonary rehab] can improve FEV1 values, therefore improve lung function, yet the condition will still get worse? Or does it mean that improving FEV1 values/lung function can keep you stable for many years? Thank you so much.

[Alberta56]

I thought I was reasonably fit before I was diagnosed with bronchiectasis. My body could always do what I wanted it to .But I think we lungies have to think like athletes and keep our bodies that bit fitter. Strong muscles are more efficient at utilising oxygen, as I understand it. Hope someone will be along soon who can explain the process properly.

PS don't worry too much about asking questions. It's the best way to find things out.

[Ergendl]

When I did PR, the physio taking the session helped me realise I was overbreathing and causing myself more problems than I needed to. She helped me control how I breathed when doing exercise, which in turn helped my lung function improve.

The singing group I run, which has vocalisation exercises, light stretches and singing exercises as well as some great karaoke songs, helps participants practice controlling the muscles involved in breathing, which makes us use what we've got to the best effect.

So some people, like myself, find not only an improvement in breathing but also a move upward to an improved diagnosis.

[PaperQueen]

I found Pulmonary Rehab to be the single most helpful thing that I had been offered. I have severe COPD but it helped to give me the confidence to really push myself to remain active. There are also various experts there to answer all those questions that you never get time or forget to ask your GP or respiratory nurse. You won't regret doing it.

[TheOldBoy]

Hi COPD / lung function is a numbers game…

I’m not a clinician, so anyone please correct me if I’m wrong…

Your FEV1 can be presented as 2 values either the absolute / actual volume in litres OR a percentage of predicted volume for your age sex etc…

Everyone after there mid 20’s has a declining lung function… So the volume predicted for your age reduces each year…

The hope is to move you from an accelerated decline associated with COPD + poor lifestyle to a more normal decline…

So technically if your FEV1 declined by say 30ml / year your percentage of predicted function would hold the same or similar… For example the graph below shows how decline can be improved by smoking cessation…

There are many people on COPD foundation website who hold their own for decades at 50% or below… But the take home point is you have to become a ‘poster girl’ for healthy living eg smoking cessation / good diet / exercise etc…

Anyway good luck and post as much as you want, we’re all in this together

Regards, Adam

FEV1 / smoking status

[Mopsey1897]

that’s a very good question and was interested in reading all the answers. I still get confused as I have severe COPD emphysema - 40% LF - but my respiratory doctor said rehab would be a waste of time as I wasn’t bad enough! Was never prescribed an inhaler by him as he said I didn’t need one but I got one anyway from my gp. How severe do I have to be to get the rehab?

[Madonna1 in reply to Mopsey1897]

I just finished a 6 week course on rehab course and my last lung function was 46% so you are able to go along, my consultant wasn't sure if I be excepted but I was as I struggle in winter months and more breathless going upstairs ect. I would.ask again to refer you to the rehab team they will assess you.

[Mopsey1897 in reply to Madonna1]

Thanks, I will

[Loopylorre in reply to Mopsey1897]

That really annoys me to hear you’re not bad enough Yoga 2011 , it would be more logical to know earlier on how to maintain a healthy lifestyle than leave it, I didn’t get to go to PR until 10 years after I had been diagnosed, I was so annoyed as I learned so many things that I would have changed much sooner if I’d known sooner, I stopped smoking as soon as I was diagnosed but you learn so much , they really need to go by, prevention is better, rather than waiting, keep asking to be referred, good luck 😊🌺💐🌷xx

[Mopsey1897 in reply to Loopylorre]

Thanks, I’ll ask again

[Coughingalltheway in reply to Mopsey1897]

I was told that the criteria is either 2 exacerbations or one serious one that involves hospitalisation over the course of one year but I'm guessing that each NHS Trust sets their own rules. PR is normally run by the respiratory community team so it might be worth giving them a ring to see if they have any spare placess?

[PaulineHM in reply to Mopsey1897]

Blimey, Yoga 2011. who is that doctor issuing you that bad quality incorrect information ??? Makes me so cross. Have you asked this doctor what the NICE Guidelines recommend for PR?

Ok. lets start at the beginning. Activity for anyone no matter whether or not they have a health condition will benefit from keeping active, maintaining their cardio vascular health, muscle tone and strength.

People with long term health conditions will definitely benefit from keeping active and having a exercise programme ( from diagnosis in my opinion ) Exercise desensitises our experience of breathlessness - breathlessness is the one the main causes of de conditioning the body, when it works less well for us and so the vicious cycle begins. I have only attended 2 PR courses in 21 years.

Pulmonary Rehabilitation is a course of education, inc. medication, your condition, breathing techniques and more with a graded exercise programme which is offered to people with lung conditions. It is available for people who score MRC Dyspnoea score of 3 with the NICE recommendation of including people with MRC Dsypnoea score of 2 where possible. Waiting lists are long and this is due to staff shortages.

Table 1.MRC dyspnoea scale (used with permission of the MRC)

Grade Degree of breathlessness related to activity

1 Not troubled by breathless except on strenuous exercise

2 Short of breath when hurrying on a level or when walking up a slight hill

3 Walks slower than most people on the level, stops after a mile or so, or stops after 15 min walking at own pace

4 Stops for breath after walking 100 yards, or after a few minutes on level ground

5 Too breathless to leave the house, or breathless when dressing/undressing

The British Thoracic Society deem that PR is the best non pharmacological treatment which we patients can have. It is recommended that we are offered it annually although that rarely happens.

If you calculate your MRC score and if it is 3 or higher then you are eligible for a referral to you local PR team who will offer you assessment to see if a PR course would be suitable for you.

Any questions... just let me know.

Go well,

Pauline

[Mopsey1897 in reply to PaulineHM]

Thanks. I’ll ask again about rehab. I do exercise by walking outside or on my treadmill and I’ve done yoga for years although I did stop but will resume after my holiday next week. I don’t smoke anymore, stopped 17 months ago, before I found out about my lungs so good timing. I’m active with housework, gardening etc and I walk up and down my stairs a hundred times a day lol, but I’m sure there’s more I could do for my lungs if I knew about it but I don’t seem to meet the criteria yet. In the meantime I’ll find breathing exercises to do. Thank you

[PaulineHM in reply to Mopsey1897]

Hi, yes I am a yogi too. Used to teach but haven’t done for a long time now. I have a regular Yin class which really helps.

Your activity levels look great and it is good that you perhaps don't meet the criteria for PR yet. Well done for stopping smoking. It definitely helps.

Keep strength and muscle tone is very helpful because that type of exercise helps us to metabolise oxygen better. You might find that your local authority has a respiratory exercise class which you could join. In the early days in my story I found that very helpful.

Have you looked at this web page at all ? You might find it interesting.

asthmaandlung.org.uk/living...

Keep in touch and let us know how you get on.

Go well,

Pauline

[Mopsey1897 in reply to PaulineHM]

I’ve just downloaded the handbook which looks really helpful, many thanks. I’ll have a look for classes as well. Do you have the emphysema or bronchitis COPD? Many thanks x

[BrigidsFire in reply to Mopsey1897]

Interesting about the inhaler. I was told by my rheumatologist (I have lupus so am under a few consultants) that any inhaler wouldn’t work for my pulmonary fibrosis.

But the pulmonologist I see at the same clinic (I’m lucky, they do a joint clinic at my hospital) prescribed salbutamol for me to use as and when needed. I’m using one inhaler a month, but it seems to help somewhat with my cough. Which I’m guessing in turn helps with my SPO2 as when I cough my sats drop dramatically.

I am going to push for pulmonary rehab based on this thread!

[Timberman]

The FEV1 test is a bit off i reckon. A few years back I was about 42%. Some good PRS courses and some good holidays and it stabilised and even rose to 44%. But since then it has slowly declined until now, about 12 years later, it has dropped below 30% and I am on 24x7 O2.

From what I have been told and have read emphysema is progressive. The little alveolis lose shape and become ineffective over time. No one seems to talk about the point at which this becomes critical and it is not for me to speculate.

[Mopsey1897 in reply to Timberman]

Did you have emphysema for many years before you needed oxygen? I did think I could have done better in my FEV tests but I struggled understanding the nurses instructions as I couldn’t hear too well on the day due to ear pressure problems and the nurses accent.

[PaulineHM in reply to Mopsey1897]

Jumping in. I didn’t need oxygen for the first 13 years ( out of total 21 years now since diagnosis ) I have a dual diagnosis of Asthma COPD Overlap so the symptom burden is slightly higher. Not everyone who has the condition will need oxygen.

Keeping yourself infection and exacerbation free definitely will help to keep your lungs from scarring.

Go well

Pauline

[Mopsey1897 in reply to PaulineHM]

Thank you. I try not to worry and stay positive but I get panicky about if I’ll need oxygen and when. I think I assume everyone will need oxygen for emphysema. It’s good to know you stayed well for many years. Have a nice day x

[PaulineHM in reply to Mopsey1897]

No worries. Stay well and we are always here.

Pauline

[Germantara]

I hope you always feel free to ask questions and as maney as you like because you get good advise from other peaple who have issues

[PW_R]

Essentially you can exercise twice a day for the next two years, and increase your numbers but then one seemingly innocuous cold/flu/RSV can permanently remove all your hard work. That’s what happened to me. I honestly think, as mentioned above, staying infection and exacerbation free is literally the only way of halting the disease. Far far more important than diet & exercise. In the end you need to make a choice between being social, OR letting your disease get worse. Isolation V increasing disability. A horrible choice! If I could do it again I’d disappear myself for winter. I’ve lost so much since last winter & im still only ‘mild’.