Do any of you find that once you start using oxygen that you get use to it and have to use it all of the time? That’s my worry. I use it for showering and if I go for a walk , but that’s about it. I don’t want to feel like I have to use it.?
Also about inhalers, the daily ones, not rescue inhalers. Do you find you become more dependent on them the longer you use them? I’ve tried several but I never seen much of a difference so I’m not currently using them.
I need to find a new pulmonologist, mine retired 2years ago.
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Your second does and my answer is No ! I have been prescribed the blue inhaler for use up to 2 inhales 4 times a day. On a bad day I use it only 3 times, maximum - often just 2. Mind you, I don't find it very effective. My diagnosis is mild COPD.
I have been prescribed oxygen and I have to use it as it protects all your organs. You must have been prescribed oxygen so use it as you have been told to..xx.Sheila
I gave up smoking the day I was diagnosed with COPD. That was 2010. My Granddaughter was 2 and I wanted to see her grow up.. She's 17 in July and I've had the pleasure of spending every single day with her. She had her Prom last June and is now doing her A levels in College. She was my inspiration and I never smoked another cigarette once the decision was made..Take care and only use oxygen as prescribed as too much can be just as dangerous xx.Sheila
You should be very proud of quitting. I’m happy for you that you were able to watch your granddaughter grow up.
Did you just quit cold turkey or did you use nicotine patches? How old were you when you quit smoking?
Are you on oxygen day and night? How much oxygen are you on? I’m just really scared if I get reliant on oxygen I’ll have to use it for the rest of my life.
I know I must sound stupid. I’m 60 and have smoked since I was 20. I enjoy smoking, I have to think really hard. I know I should quit. Life is short.
My sister quit smoking 10 years ago and she seems to get bronchitis more frequently and lung infections. It’s crazy but true. She didn’t get them when she was smoking.?
It depends why the oxygen has been prescribed for you?
Some people need it as they recover from a serious lung infection, they can leave off the oxygen after a few weeks/months as their oxygen levels recover.
Some people need it to help to get more oxygen into their lungs and blood stream due to damaged to the lungs on a more permanent basis. If you have been prescribed oxygen for this then it is unlikely you will be able to stop using it. Your body will thank you for continuing to use it.
For the sake of your health it would be wise for you to use it at the dose which has been prescribed. The consequences of living with low oxygen levels in the body are not pleasant at all.
Inhalers- it is isn’t a case of becoming dependent on them but rather a case that the lung condition you require them for is a progressive one and won’t improve.
I see you are in the US and understand that medical facilities there are quite different than here in UK - yes seeing a Pulmonologist if you can would be helpful I imagine.
You can always take a look at this website which has lots of information on it. asthmaandlung.org.uk
You could also look at this- co authored by Mike Hess- who I know has lots of specialist knowledge when it comes to oxygen therapy.
It depends why the oxygen has been prescribed for you?
It was prescribed for me to use as needed. So when I’m exercising, showering, any physical activity. I don’t do a whole lot so I don’t use it all of the time.
Inhalers- it is isn’t a case of becoming dependent on them but rather a case that the lung condition you require them for is a progressive one and won’t improve.
I do have copd, so it is a progressive illness. I took two breathing tests at a pulmonologists office and both times that they gave me albuterol my breathing actually got worse. They said I was strange because it helps most people. Albuterol is used in the states as a rescue inhaler. I’ve tried other inhalers for about a year and it just seems to make my breathing worse.
I do need to get back in to see a new pulmonologist, mine retired and I hate going to new doctors.
I will look at the links you sent me. Thanks so much.
Ah, your oxygen prescription sounds like what we call here Ambulatory Oxygen- when our oxygen levels drop on activity, as opposed to LTOT which stands for Long Term Oxygen Therapy- which when we have to use it for at least 15 hours a day and can mean two different oxygen prescriptions.
Sorry your inhalers aren't helpful. There is a whole range on inhaler medication available so I hope you find something which suits you.
Yes it’s just for when I’m active. My pulmonologist retired couple of years ago so I need to find a new one. I need to get new tests done. I’ll go from there.
I will look for different inhalers when I get in to see a new pulmonologist, I’m sure I’ll have to wait for at least 2-3, months to get in.
Sorry to be blunt but you will have to use the oxygen for the rest of your life. The reason we are put on oxygen to start with is because our O2 levels need to be above 85% or organ damage and brain damage can occur. Most of us start with oxygen when we sleep or when we have physical activity (like showering). That is where you are. I was there over 10 years ago. Am still using oxygen. You will start needing it more as the years go by. Do not feel ashamed or anything like that. Feel glad that this will help you live longer.
A lot of people are really messed up on their inhalers and are using them wrong. That is why they don't seem to work.
If you are using a maintenance inhaler which are prescribed to use once or twice a day and are not using it the once or twice a day, every day, then it does nothing.
You may as well throw it in the trash. But you need to give it time to start working. After about two weeks they settle down and start making a difference.
You said you have several of them which is not good either. They do not work together. Pick one, try it for 2 weeks and if no improvement then throw it out.
These are not meant to work "as needed" That is for your "rescue" inhalers - those you take as needed a few times a day. I would suggest you use a puff or two from your rescue inhaler about 15 minutes before your shower and see if that helps with your breathing during bathing.
A lot of times we are given the maintenance inhalers when first diagnosed and it seems they don't do much good. But we do not see inside our lungs to see how the lining is relaxed and soothed by using the right meds.
Keep in mind all these suggestions should be talked about with your medical team as only they are trained properly for any changes that need to be made.
I don’t mine blunt people because I am pretty straightforward myself.
Most of us start with oxygen when we sleep or when we have physical activity (like showering). That is where you are. I was there over 10 years ago. Am still using oxygen. You will start needing it more as the years go by. Do not feel ashamed or anything like that. Feel glad that this will help you live longer.
I had a couple of questions. So you were where I’m at now 10 years ago. How fast did you progress to needing more oxygen? How long did it take before you were using oxygen all the time? Do you have oxygen when you sleep also? How many liters did you start on and how many liters are you on now 10 years later? just wondering what to expect. I am on 2 liters of oxygen when I use it.
As for inhalers, I didn’t mean I was using two of them at a time. I always only used one inhaler at a time. I simply don’t like them. I followed the doctors orders and used an inhaler once a day, I used it for a month. I didn’t feel any benefit and my doctors was okay with that.
I liked your suggestion on trying a rescue inhaler before showering. I will see how that goes when I’m prescribed a rescue inhaler. I never have had a rescue yet.
When I was first diagnosed with copd (2014) it was from test they did when I had a chest cold. So I was given a wrist monitor to wear when I slept for a few days. It showed my oxygen dropped to 75 when sleeping. A lot of people think if they test it when they first wake up it shows what it is when they sleep. That is not true since as soon as you wake up your lungs change jobs. So based on that test I was put on oxygen (2%) just to use at night and "as needed". I was given two daily maintenance meds, Advair and Sprivia. Took Advair twice a day and Sprivia once a day. Was given a rescue inhaler to use before activity. And prescribed "Pulmonary rehab"
At this point I was still working and did not have much trouble with daily activities. I felt the rescue inhaler which was Pro Air (albuterol) was not doing anything so I chose not to use it which was ok with the doctor. In the states everyone is prescribed the Pulmonary rehab which is like going to a gym but not really. All the work outs are very easy and designed just for heart/lung patients. No one else is allowed so there is no buff guys running around lol.
Fast forward. I kept up with pulmonary rehab for 7 years until covid hit. Then I tried to keep up with it with u tube versions of the same exercises. By now my breathing was getting worse and I was prescribed portable oxygen for daily activities, like walking, working etc. Still taking the daily meds.
Fast forward now. 2025. My breathing is very bad. Some days are good, some not so good. I have tried many different maintenance meds and inhalers. They are all about the same it seems. Still on 2% oxygen. While the daily inhalers don't seem to do much you can really tell that they do when you don't take them for a day or so and the breathing gets really really bad.
I cannot get a lung transplant because here in the states you need a couple family members or close friends willing to take care of you for a period of time after the transplant and you cannot hire nurses to do it. I have 2 family members, one is too old to do this and the other cannot take off work for that long.
I feel I can go at least another 10 even if my activity is so limited. The pulmonary rehab exercises were a bigger benefit than any meds and I am trying to get back to doing those daily at home.
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