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Some Practical Questions
I have been on oxygen almost continuously since April, which has not been an easy transition! For those of you who have been doing this a while, can you give me a few tips?
-How do you keep from stumbling over long, coiled tubing? I haven’t tripped yet, but I suspect it is coming. Myself and my husband trod right over the tubing, but when my kids and grandkids are around, I can have 20 people all trying to avoid my tubing. I’m worried about them falling, and it’s obviously uncomfortable to have it ripped off my face, as well. I tend to get frustrated and just take it off, to a cacophony of people saying, “No, Mom/Grandma, put it back on!”
-Do you have a specific type of nasal cannula that you’ve found the most comfortable? I recently changed oxygen providers, and had Salter soft touch cannulas with the previous provider. This provider carries a different brand, which is much less comfortable, but when I look at Amazon to see if I can order the Salter cannulas, it says I have to have a license to order them. Any suggestions?
-Do you cook with your oxygen on? If so, is it safe? Is there some type of cooking you do not do? On days when I have enough energy to make dinner, I’ve opened a hot oven and realized that’s probably not a good idea! I love to cook, and have a large family, so if I ever see an improvement in function I’d really like to cook again.
-How has it been to travel with a POC? I have an OxyGo, and my provider keeps the dual-battery travel model to lend out for trips/overnight stays. I have been reading some of the articles about airline rules/procedures. Has anyone worked with United? Right now I’m not in great physical shape, and the thought of travel is exhausting, but at my age, and with a serious, progressive disease staring me in the face, I hope to make one more trip to the UK/Europe. My oldest daughter will go with me as a travel companion, hauling bags/compressor and so on, and I am determined to make that work somehow! I am taking a short overnight road trip later this month, which will be a good trial run.
Maybe a couple of less practical questions:
-How often do you check your pulse ox while you’re wearing your oxygen? What kind of numbers do you aim for with 02 and HR? Do you “experiment” with the pulse ox without your oxygen on? I’m not “prescribed” oxygen 24/7, just with exertion, but that’s another question…I don’t (well, didn’t used to) just sit around much, and if I do, I’m up and down quite a bit. It’s obviously not practical to put it on and take it off over and over again. Do you just find yourself keeping it on to make life easier?
-I appreciate your advice, Brittany, to monitor symptoms to keep track of how my body is responding throughout the day. Have you noticed that your sats can look good, HR can stay reasonable, yet you’re exhausted, breathy with speaking, or experiencing chest pain? I do see this later in the day, and am learning how to read the oncoming fatigue/symptoms. Do you experience the brain fog even if your sats look good?
-Lastly, do any of you find your oxygen sats go down when you lie down? I expected them to rise, although I know many of us (myself included) require oxygen at night, while sleeping. I can go down to 81-82 just lying down while awake, at times. My pulmonologist thought perhaps if the heart isn’t pumping efficiently, position changes change the way the blood pools. I suppose once I have the right heart cath, I may get an answer to that.
As soon as I recovered enough from my initial illness to become more mobile, oxygen felt like an enemy…frustrating, embarrassing, inconvenient. At some point, though, when I realized how I felt with it, and how much more I could do, I had to turn a switch in my head and consider it a friend. That helped me accept it, and now I’d like to figure out how to make it work. Thanks!
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