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Oxygen
A MyCOPDTeam Member asked a question 💭

Hi I have been on oxygen for over a year now 24/24 i been working hard on losing weight, rehab, and doing what is asked from me, they check often but i wonder, can one ever get to get off oxygen or is it to stay.

posted August 26, 2020
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A MyCOPDTeam Member

You can get off O2 sometimes. I did. In 2003, I went on a very aggressive diet and exercise program to lose weight. At that point my FEV1 (after hospitalization for respiratory failure) was 16% and I was on O2 24/7. I had no reason not to exercise as hard as possible, and I did, using my O2 to be sure my sats were in the mid-90s when I did. I also used a 1200 - 1500 calorie diet. Over 18 months I lost over 100 pounds, and among other benefits, got off the O2 completely for about 10 years. My FEV1 went back up to 37%, which is what it had been when I was first diagnosed. Both my docs and I credit the weight loss for getting me off the O2, though the exercise certainly helped.

My FEV1 is still in the mid 30s and I now use O2 for most exertion. That's the disease progression over what's now close to 17 years. So yes, you can get off O2, at least with diet and exercise. Whether you can do it if you don't have the weight issues is still in question. I don't know anyone who has, but you never know.

posted August 26, 2020
A MyCOPDTeam Member

Everyones' case is different, but I am an example of doing just that. I was on oxygen 24/7 for 2.5 years, but I got better, and a year ago in April my pulmonologist took me off oxygen all together after my last pulmonary function test (done at the hospital). I don't know how long it will last and I still have my big concentrator and my Oxygo portable unit in case I need them. I went from being VERY sick and unable to walk from the bed to the bathroom without great stress because I was so short of breath, to feeling almost normal. It took a couple of years with medication and oxygen therapy, and as Jean said - I lost a lot of weight.....which helped tremendously with everything. I am now maintaining without oxygen. I take Dalyresp and Trelegy each day. I monitor my levels daily. I want to exercise but have difficulty because of a bad knee. I have been exercising in the pool this summer, but not sure what I will do once the weather turns cool.

Anyway, I certainly don't know your situation or your level of sickness, but I did want to let you know that it is possible to come off oxygen since I did just that, so try to have hope and a good attitude. When I was first diagnosed I was so sick I thought I would never feel better, but it eventually happened, and I improved. I have come a long, long way from my first diagnosis.. Take all your medicines, use your nebulizer, use your oxygen and attack any excaberration immediately. Lose weight if you need to, and if you don't need to lose, try to exercise if you are able. It actually scared me when my doctor said he wanted me to come off the oxygen. But, he was right. I am maintaining my levels and feeling pretty good without it. My husband has been a great help during my copd battle. He too has it, but not as bad as me. Best of luck!

posted August 28, 2020
A MyCOPDTeam Member

@Moejoe, I hope you can maintain your lifestyle, and stay off O2. Part of the reason you're not on O2 now is that you clearly have enough good alveoli that you can exchange O2 and CO2 and you have a good exercise program. Unfortunately, that may not always be the case, because COPD is progressive, and even if your FEV1 doesn't change, the liters you can actually expel reduce every year. Mind over matter is great, but it doesn't always work. If you do need O2 at some point in the future, please don't refuse it. That truly is a bad death and totally avoidable.

posted August 27, 2020
A MyCOPDTeam Member

Hello. Everyone Keep exercise is the most inportant things right now for our Lungs, Take care all God Bless each one of you

posted September 8, 2020
A MyCOPDTeam Member

sorry, no such luck Suzanne .put keep positive and do as much exercise as possible .im not on o2 so i can still walk .iwalk 12000 to 14000 steps a day .i have an app on my phone and it tells me that I should get going .love the machine it gets me off my ass and go .breateasy dear

posted September 1, 2020

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