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Do You Use Oxygen "As Needed" or 24/7?
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Jo Ann,
Unfortunately sometimes we have to learn the hard way about those that have the most knowledge about certain things. Sometimes I feel like the doctors may not know all the things a respiratory therapist or physical therapist are able to tell you. It’s best to get the information from those that you trust to have the most knowledge especially when it comes to oxygen use. It’s unfortunate that it can be so difficult to get all we need and the different systems. -
I’m following this, because oxygen delivery has been my biggest hurdle. Some mention “raised diaphram”, what is that and what are the symptoms. Anyone have stomach bloating related to food and breathing issues?
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@cynthia-winston I have trouble with bloating due to digestive issues. My GI doctor said that sometimes when the diaphram doesn’t move as well or when the lungs are restricted it doesn’t create enough space in the stomach and it can get bloated like that. But that is part of my particular condition. Do you see a GI specialist? IF you are seeing a PH doctor maybe they can help you find a specialist too. I also have gastroparesis (Slow emptying of the stomach) and that causes a lot of gas and fluid retention and is super painful. Do you have pain with the bloating or notice any patterns when you get bloating like what you ate etc? Or is it random? Do you notice breathing changes WITH the bloating?
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I’m going to be starting a new job soon, and will work around seniors/dementia/Alzheimer’s facility. I was diagnosed with severe PH in June 2019. I am to use 2 liters oxygen. At my job interview I was not wearing oxygen. I was hired, and I’ve been seriously considering not wearing my oxygen at work – or I may look like someone that lives at the facility. I had gotten a portable oxygen concentrator in case I found a job. Even though an employer cannot discriminate against me for using oxygen, it does happen. I believe if I don’t use oxygen at work, but consciously take deeper breaths, I can keep my oxygen above 85? I need the money.
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Beth, welcome! It’s nice to see you posting right away.
I sympathize with your oxygen dilemma and how much you need the job. I do suggest that you discuss this with your doctor. Ask him if there are consequences to adjusting your oxygen use to accommodate your job. My son was told not using his oxygen properly would put more strain on his lungs and make him more symptomatic. Everyone is different though and hopefully your plan will be sufficient. Keep us updated. I respect the work that you do. I can imagine this job has it’s heartbreak and challenges.
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Thanks for ur message Colleen. I asked nurse about not using oxygen while at work like 9 hrs a day – of course, doctor would not give support to my plan. I plan to do first day of work without oxygen, try to consciously breathe better, as I’ve always been a shallow breather. – I see how it goes and decide if I should tell employer about oxygen use. This job will be new to me, less stress than working for attorneys. I need to bring in income. I originally just wanted to be a receptionist, and may ask about that, as it would be easier to use oxygen I believe. Everyone take care.
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Brittany, have been on oxygen last four years 24/7. 8 to ten liters with excercise 4 at rest . In end stage now , so at times need to go to 15 liters . At times find it hard to regulate , 4 liters allows me to sleep , Do go to gym everday and try and pace self to what the body is calling for .
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Thanks Brittany, maybe can’t change it but might be able to make the closing moments more comfortable for all. Slow it down a bit
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@steelcity so true and a much needed reminder to take things slow and actually stop to enjoy things in life. I feel like I have been so used to living in fast forward and always looking towards the next thing instead of just taking time to appreciate the here and now. It’s hard to maintain this mindset but on really hard days I have to be reminded of that. Thank you, your advice came at the right time.
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Brittany thanks. You sure have been through more than your fair share. Your words are uplifting and thoroughly appreciate the inspiration
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@steelcity Thank you so much! I really appreciate your kindness. I hope that you are having a good day so far. As GOOD as it can be !
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