Is there any COPD research being carried out anywhere?

[qbjb]

Is anyone anywhere investigating why we continue to deteriorate faster than normal ageing despite medication after stopping smoking?

(The current trials are virtually all drug based, not research.)

[martin1945]

There are any number of researches going on at any one time, from medical institutes through to pharmaceutical companies. Google - Medical trials emphysema or COPD.

[qbjb in reply to martin1945]

Thanks Martin.

[AlBlownout]

Continued lung deterioration in COPD sufferers after stopping smoking is often caused by Alpha 1 Antitrypsin Deficiency. There is a research centre at Queen Elizabeth Hospital in Birmingham called the ADAPT Centre. A simple blood test at your GP will determine if you are A1AT deficient.

[qbjb in reply to AlBlownout]

That is very helpful AlBlownout - I will ask for that blood test, thank you.

[Parvati]

We don't all continue to deteriorate faster - some of us stay stable, others improve - it is not a foregone conclusion. There is non-drug research going on too -e g into muscle wasting/ muscle building, nutrition / mapping the lungs, etc. I am improving over the past 7 years - but my own research says that I have spent too long sitting at the computer yesterday and this morning, which is bad for my muscles and breathing ... so that's me done with it for a day or two..

[Hidden in reply to Parvati]

That's really interesting Parvati. How long is too long ?.. am thinking i need to ration sitting or interrupt it more often ... sometimes such a challenge when breathlessness results! My muscles wasting this year. More infections and need to rest more as result!!! X

[dukes in reply to Hidden]

In my case, Julie, too long at the computer is when my feet begin to swell. I tend to loose all track of time and can spend hours without a break

[qbjb in reply to Parvati]

Parvati, you are amazing!!

I'm now getting the message that it's all my own fault - and it probably is. Information I was given was very negative when first diagnosed (I challenge that diagnosis as mentioned previously) and it threw me into a depression as I was expecting to die every year ... I also spent hours on computer, not the healthiest of 'activities'

Thank you!

[katieoxo60]

Good morning Gbjb, looks like we will have to look at what current research is going on to answer our question. But agree with above not all of us deteriorate after diagnosis. I have been stable myself and my last infection was over 18 months ago, even my breathing is fairly stable no worsening but no better either. So I'm off to see my family for a birthday party today. So enjoy your day catch up with you another time.

[qbjb in reply to katieoxo60]

That's good to know, katieoxo, and long may your stability continue (sounds weird but you know what I mean )

[dall05]

Hi qbjb, my lung function has been pretty much stable over the last 4 years and I put it down to a combination of the right drugs and exercise. The biggest step forward in those 4 years was losing 2 stones so if we cant improve our lungs we can still improve our bodies.

Tony

[Hidden in reply to dall05]

That's great advice. X

[dall05 in reply to Hidden]

Thanks JK, It has worked for me so it should work for all healthunlockeders.

[qbjb in reply to dall05]

Hi Tony - you are a total inspiration!! Ok - I need to get off my butt and lose some weight - you never know, I might get up to them thar hills one day!

Jude

[dall05 in reply to qbjb]

I'll carry you on my shoulders ok. after a can of spinach, Ke ke Ke Ke. I got to the top of my estate today in just under 20 mins so all is well. I use these set walk times to see how my lungs are behaving and I'm holding my own and stable.

How are things with you Jude?

[qbjb in reply to dall05]

Lol - you'd better wait 'til I've lost a couple of stones or you'll be ke-ke-ke-collapsing!!

Thanks for asking, Tony, not too good - can't get my oxygen level up - have just finished second lot of emergency meds within two months. Seeing doc later ...

Jude

[out-for-lunch in reply to dall05]

lol ...... dietitian told me to put on 2 stone. I'd slipped into a no appetite routine.

I've achieved that goal & I'm now heavier than I've ever been, with a waist now 2" larger than I've known. Buying new clothes that'll fit & throwing out old favourites that are too small, all something I didn't expect.

Still, people I haven't seen for a while all tell me I look much healthier than I was ...... I may look it, but damn I feel bloated.

[qbjb in reply to out-for-lunch]

- pleeeze tell me how to slip into a no appetite routine!

I have had to buy ever increasing sizes of clothing over the past two years - and not even worn some before getting too fat! Bloated - hmm - that too, lol, but nobody dares to tell me I look healthy!

[Colours23]

I feel much better now than I did a couple of yrs ago when I had my first ex.of hospital ,lung attack, after studying myself what was goin on with me ,I find I can cope a lot better and enjoy life as much,I struggle a lot ,but keep up the fight to get the meds I need to feel well as can be,attitude is important ,discover what you need ,I'm having acupuncture it helps with relaxing eating sleeping energy ,all the symptoms copd present, so I can breath better,it's ongoing and I feel good!finding what's right for us as a individual !have fun.

[qbjb in reply to Colours23]

Thank you Colours23

[hufferpuffer]

Hello Qbjb, I have improved since being diagnosed ten years ago even though I'm Alpha1. I know if I don't take the meds I can barely get around the house so I know they are helping a lot. I walk the dog three times a day for about 40 mins each time or more and getting through a bottle of oxygen a day on 3L per min., sometimes I use more than one bottle if I wear it for housework or gardening. I haven't had to take any AB's or steroids since last September fortunately, I just keep telling myself I'm feeling well and I do feel well! it really works for me and I recommend it! xxx

[qbjb in reply to hufferpuffer]

The power of positive thinking hufferpuffer! I seem to have lost that along the way somewhere ... I think I need to give myself a good talking-to!

Thank you xxx

[hufferpuffer in reply to qbjb]

themindunleashed.org/2014/0...

The power of the mind Jude! hope it goes well at the doc's! huff xxxx

[qbjb in reply to hufferpuffer]

Thanks huff - doc now tomorrow! Will read your link later xxxx

[Ian123]

I believe research has shown many phenotypes within each condition under the COPD umbrella making generalisation about rates of deterioration an irrelevance.

The research that will make the most difference in living with individual conditions is finding what works for each day as it's faced.

To paraphrase a great man - Do not ask what researchers are doing for you but ask what you can do for research, NIHR is one start point nihr.ac.uk/research/

[qbjb in reply to Ian123]

Thank you for that Ian123.

I volunteered for a research programme but unfortunately I wasn't fit enough to take part. That didn't help my state of mind!

[ritired]

I have just completed a two year research programme conducted at Southampton General Hospital on behalf Of Welcome Trust looking into the causes of COPD, they monitored over 100 of us all at varying stages of the illness, now I am waiting to start another programme. Also here in Southampton we are fortunate to have a Rehab Maintenance group which carries on from the six/eight week standard Pulmonary Rehab, this I have been attending for over a year now on a weekly basis. On recent six minute walk tests all those tested improved their distances, this covers people with a wide range of COPD.

[qbjb in reply to ritired]

Southampton is obviously a good place to be, ritired, and that is very inspiring.

I did a Pulmonary Rehab course but ended up in a much worse state than I started. My pulse rate was all over the place and I was diagnosed with a heart condition. I couldn't walk the distance at the end of the programme!

[ptliverpool]

Wow! Southampton seems to really look after it's COPD patients. Keep up the good work,volanteering for the research. I do hope it comes up with something better than what we have now.

[Hidden]

Am like you with infections this year. Must get more active again...Thanks for advice. Am wondering if my breathlessness is more about heart ... very sob now even though infection in lungs seems to be cleared ..not much mucus now. or is it all the drugs challenging the heart ? Think better do what you are doing and get investigated ... hope all goes well with you.

[Kad21]

The major research involved stem cells and regrowth, this unfortunately will take years if not decades. My mother passed from COPD 30 years ago, and her treatments were the same as what I take today, not much progress there I am afraid.

[qbjb in reply to Kad21]

There are clinics currently doing stem cell 'surgery', at a high price, but nevertheless it is out there for anyone who can afford it. (This was discussed quite recently.)

No guarantees of success, of course.

[Dorris59]

research links diet to COPD

nih.gov/researchmatters/apr...

[Hidden]

Thanks. Am monitoring. Now off steroids ankles back to normal ! My pulse rate is also high usually to get oxygen where it needs to be I guess. Your advice led me to put treadmill in lounge. So here's to me walking a lake too enjoy your walks. Determination like yours does pay off eh x

[Hidden]

:))

[MarkPilling]

Hi

Why don't you take a look at the research that the BLF is funding into COPD (and other conditions).

The following link takes you to the BLF web page and our Changing Lives report.(blf.org.uk/Page/Changing-Li...

Thanks

Mark