Hi, Stewart,

I've had COPD since 1985, though I wasn't formally diagnosed until 2000, so I've dealt with this for a very long time. In 2003, I really began my COPD journey. As a result of being hospitalized for respiratory failure, with the approval of my doc, I started a very aggressive exercise program and diet to lose weight. Over 18 months, I lost over 100 pounds and found that it made a huge difference in how well I could breathe, how much exercise I could do, how I felt, the energy I had. Because of those improvements, I was able to get off O2 completely, reduce many of my medications, put my c-pap machine in the closet, got my FEV1 back up to the mid-30's where it had been when I was first diagnosed, I worked full time until my planned retirement at the end of 2009, and began a second career as a COPD advocate. I'm heavily involved with the COPD Foundation, the American Thoracic Society, the Lung Association and other groups. I speak regularly at national and international conferences as a patient advocate for better patient care.

I have been invited to speak at COPD10, which will be held in Birmingham on June 28 - July 1. This might be a place where you could learn a lot. I've accepted the invitation and plan to be at the conference and then to spend four days in London (July 2 -5) before heading home. I would love to meet people with COPD from the UK, so if there's some way that might be done, I'd be pleased to meet you and anyone else from the UK. There's also the British Lung Foundation which has a variety of services and informational links you might find interesting and the European Lung Foundation as well. Both have excellent resources.

Actually COPD is only the 3rd leading killer in the US, but it's steadily rising and that's a very scary statistic. We are finding that people are being diagnosed earlier and earlier and we're now finding that at least 25% of those diagnosed have no smoking history. What's even worse, however, are the statistics coming out of China and some of the other countries where biofuels are used for cooking and there's a large percentage of the population who smoke as well. In those countries, the percentage of people with COPD is much higher as is the death rate.

That's all pretty dismal, I agree. However, the research being done is exciting and promising and the move toward patient-centered care is really heartening. That's a lot of what will be discussed at COPD10.

Now I'm probably boring you!

Jean

Hi. No my levels about 95 I do not need oxygen. I meant that I was offered it by fire brigade and I said no I am not on oxygen and then the ambulance paramedics tested me and said no u do not need it. . All these people carry it. Offer it first thing as well. You do need to know about your own COPD and yes learning is an asset. The first time I went to ER in an ambulance in 2003 they had me on oxygen in the ambulance and I was panicking. Then in ER they put ,me on a nebuliser and that didn't help. then I just got worse. I know a lot now and tell them ...
Thanks so much for the information I am sure everyone here takes in as much as we can get because we want to handle this thing the best we can. We are all different as well. Hugs for a good day and night.

First off, I think you're in the UK and not the US, right? There are some distinct differences between the US and the UK in terms of how COPD is treated and the standard protocols. I also understand that it depends a bit on where you are in the UK as to what sort of treatment you get. If I'm wrong, please say so! That said, the ventolin and your nebulizer are exactly the same medicine and the same dosage. What you get from your ventolin in your inhaler and what you get from the nebulizer is the same dosage; just administered differently. Docs feel that if you are using both, you're basically over-dosing. That said, some folks feel that using a nebulizer gets them much more relief than the inhaler, and they prefer that. Talk with your doc about using just the nebulizer instead of the inhaler. That might reduce their angst about it.

As for the seretide, it's something you should be taking every day. I couldn't tell from your posts whether you were doing that or not.

I'd suggest that you do some reading of some good sites to learn a little more about COPD. I understand that you don't want to scare yourself to death, but in this situation, knowledge is power. I really recommend www.copdfoundation.org as a site where you can find a lot of good information that shouldn't scare the willies out of you.

To Patricia, I understand you reluctance to use O2; however, if your saturation levels are going below 88 on a regular basis, you're courting right heart failure, pulmonary hypertension and brain damage. So don't just dismiss it out of hand unless you have an oximeter and know that your saturation levels are always above 88. If you've been offered it, it's probably because you need it, unless there are people who sell it on the street corners! LOL....For what it's worth, I use it for exercise, sleeping, flying and for hauling stuff through airports, which I do about twice a month. The O2 makes it possible for me to do this; otherwise I couldn't travel. I'm 71, have about a third the lung function of someone my age without lung disease and I exercise every day. Just sayin'......

I know it kept me out of hospital at least 2 times past 2 years. only med I take that i fell relief right now.Medicare helped pay for mine

I have a nebulizer at home which, luckily, I've not had to use for a few weeks now as I seem to be in a temporary remission. However, it's always comforting to know I can use the Albuterol when needed.