lofty

[unified]

Am really struggling with my breathing to the extent that can hardly seem to do anything. It has worsened in last six months as have had a couple of exacerbations and a lot of sinus problems.Has anyone in this situation really improved with exercise or is this the beginning of the end?

[2greys]

Yes it certainly possible to improve with exercise.

quote my Respiratory Consultant " The more you do the more you can do".

I improved my FEV1 from 37% to 50% through strenuous exercising! Until I developed Lung Cancer which then took a tumble to 31%. My latest test has yet to be revealed to me by my GP until my next appointment which will be ? , hopefully my next medicine review next Jan. or if I get an infection sooner. I might find out in August when I see the Oncologist. Either way still working full time and managing fine.

[jmsutt73 in reply to 2greys]

Hi 2greys, I became curious as I read about your rebound from 37% to 50 then back to 31, and I went to your home page. How/when was the tumor discovered? I wonder why it was not seen during your original diagnosis? J

[2greys in reply to jmsutt73]

The tumour was discovered in Feb last year in a routine 6 monthly watch and wait scan as a high risk for cancer, it was not there before that. It was very active and fast growing. I had another large nodule in the upper right lobe of 27 mm and that one miraculously resolved by itself, but still there doing nothing, it is that one that has mainly compromised my breathing a little.

[jackdup in reply to 2greys]

Was that discovered with a chest X-ray?

[2greys in reply to jackdup]

No, a 6 monthly routine CT Scan followed by a PET Scan for confirmation. No biopsy as it would have caused more damage to my lungs, being just in front of my Scapula (shoulder blade) would have meant going through the front my chest all the way to the back. So a radiological diagnosis only, based on the amount of activity and the sheer speed of growth.

[jackdup in reply to 2greys]

Thank you. Was the routine scan because of the COPD or some other factor?

[2greys in reply to jackdup]

Both because of COPD and watch and wait as a high risk for Cancer, which proved to be correct.

[jackdup in reply to 2greys]

Thanks again.

[Ergendl]

Yes, I improved my FEV1 score from 69% to 82%, by increasing my walking gradually to 10,000+steps a day and doing a lot of singing through leading singing groups. It is worth it. If only 2 people come to one of my singing groups I still hold the session as I need to do it for me.

[challny in reply to Ergendl]

@Ergendl, that is wonderful. 82 percent is like not having COPD at all. During my last breathing test my FEV1 was 70 percent and my pulmonologist said she thought we could get it even higher. In the months since that test I have spells where I thought I was going downhill and then spells where I was doing better. Right now I am in a pretty good place and almost want to ring up my doc for a breathing test just to see. Oddly, I have not been exercising at all, because I can hardly walk with sciatica. But other doctors are working on that problem and I am anxious to get back to an exercise regiment.

[challny in reply to challny]

I wish I could delete this last post, because I hijacked this thread. I apologize for doing that.

[Ergendl in reply to challny]

I have an asthma component to my lung disease, so still have triggers like perfumes, smoke, damp, for which I have to take Ventolin to try to cope if I can't escape them.

I must also thank all the good people on this site who have given me lots of great suggestions to try, some of which have also made a difference.

[SquirrelsHolt in reply to Ergendl]

Well,now, that's such news to read Ergendl and you work very hard each week,so good on you! Your post will be a great one for new members and/or people who have questioned just how long you can live with COPD. It really shows that for some it is achievable. X

[hallentine47]

I hope it is not the beginning of the end because you describe how I feel. Diagnosed 12 years ago with COPD Emphysema and told I would be on oxygen in 5 years which has not happened yet!! I am waiting for my 4th Rehab course to begin and I have a standing bike and treadmill which I can only use for a few minutes these days but keep trying. I have made a great study of my illness and endured almost 3 weeks in ICU with pneumonia and I eat well and do all the things suggested. I have great support from community matrons and GP and regular meetings with my consultant but at the end of the day I feel just as you do. This year especially I find every day a challenge just to get put of bed and dress. Lung capacity 23% and I have cardio vascular problems and I have had a minor stroke. I only have one day at a time and that's how I live but the greatest benefit is a very loving and supportive wife who never gives up on me. Do not worry about the end bit and hold on to the now bit. Best of luck.

[unified in reply to hallentine47]

Glad you are positive. Will keep trying to do more exercise but it is hard. Am on oxygen 16 hours a day. One thing puzzles me in that I was diagnosed three years ago with copd and am now in severe stage and have had one admission to hospital but have never been sent to see a specialist and I wonder why not.

[hallentine47]

We are all so individual and the services offered so varied across the UK that we all seem to have slightly different experiences. If I have doubts I keep going back to the GP and make a nuisance of myself. We each suffer at a different pace and stay stable or deteriorate at different rates. Try asking to see a specialist or consultant?