March 28, 2018 at 2:05 am #11570Charlene MarshallKeymaster
I wanted to ask you all a quick question regarding sharing your supplemental oxygen. Before you wonder why on earth I would consider this, please read below for my explanation.
A couple of weeks ago a close friend of mine shared with me that she felt very scared due to feeling short of breath with just basic activities, and having a persistent fever for a few days. Assuming something like pneumonia, because she has never had any issues with her lungs before, I advised her to go to the hospital to be checked out. She went to the ER a day later, and since she has recently been travelling, the ER doctor ordered a CT scan of her lungs to rule out a potential blood clot from her flights. They quickly discovered that her lymph nodes were enlarged and pressing on some of her lungs, reducing her ability to breath and causing her saturations to drop anywhere between 89 – 93/94. She was admitted to hospital that night, and needless to say, was feeling pretty scared!
They ordered a battery of tests for her, including blood work for Sarcoidosis, TB, Lymphoma and a number of other things. She really had to advocate for using oxygen when she felt short of breath, which I can’t really say I understand. Her doctor explained the difference between feeling like you need oxygen (which would of course cause anxiety) and actually needing it, as her sats seemed to recover quickly if they did drop. I couldn’t understand why putting it on even to alleviate her anxiety when feeling like she needed oxygen would be problematic? Anyways, she did get a bit of it from time to time and she said it made an incredible difference, as all of us who use supplemental oxygen can attest to. She said she wasn’t struggling to breath as much, could sleep more comfortably and knew her heart wasn’t working as hard.
It took about 8 days to figure out what was going on, and it turns out she does have Sarcoidosis, which is an autoimmune disease and will flare up periodically throughout her lifetime. It may not always impact her lungs, but will from time to time and could impact other areas of her body as well. It is when there is excessive inflammation in her body, and usually the enlarged lymph nodes become problematic to the lungs. She is doing a lot better now, but still struggling with shortness of breath episodes and fearing that she cannot breathe, even though her doctor said she is getting the oxygen she needs. This leads to my next question: would it be harmful to her if I shared my oxygen with her in the event of an emergency, or when she felt short of breath?
I keep my personal oxygen concentrator with me at all times, with extra cannulas in the carrying case. I also keep a small tank at work in my Manager’s office in the event I needed it. If she were to use one of my new cannulas, and administered my oxygen to her even for a few moments until she felt better, do you think I am putting her more at risk than not? I can’t foresee a problem with this, especially if it is only a very brief period of time that she uses it, until normal breathing returned for her but I know how scary it is to feel like you can’t breathe and therefore, I want to help by offering her even a quick solution. She may end up with supplemental oxygen prescribed to her anyways, but she doesn’t see her doctor as an outpatient for a few weeks yet, so my question really is about this intermediate period.
Can anyone offer me their thoughts on this, and what you might do in this situation? I’d really love to hear from you as I’m torn because I don’t ever want to make her worse, but I also don’t want to see her struggle when I know getting oxygen in hospital, even briefly, eliminated that struggle for her quickly.
Thank you all in advance for reading this long post.
March 28, 2018 at 2:34 am #11571Kim FredricksonParticipant
Thanks so much for sharing Charlene. What an unusual situation…I can see why you brought it up. I’m a patient, not a physician and this is just my opinion. I agree with you. It sounds like she needs a small amount for both physical and anxiety-related issues. Some doctors either minimize of misunderstand how anxiety producing it is when you feel like you can’t catch your breath.
I think the idea of giving her a new cannula and access to a tank if she has an episode is fine, as long as she is monitoring her O2 with an oximeter. She needs to not take in too much (not go over 98%). I say 98% because oximeters are not always correct, so this leaves a margin of error to not get to 100%. If it reads 100%, it may actually be above that level. I would also encourage her to keep a log listing her levels, what amount she used, and how she felt before and after.
If she’s not happy with her doctor’s response in a few weeks, I would urge her to get a second opinion.
You are a very kind friend to help her with this very difficult situation.
April 1, 2018 at 3:03 pm #11592Charlene MarshallKeymaster
Thank you so much for your reply to my question about sharing supplemental oxygen.
I couldn’t agree more, it is such an unusual situation and the process of finding out how my friend is to manage her new diagnosis at home has been fairly slow-moving. Of course I don’t want to ever risk putting her or her physical condition in jeopardy, and want to respect her doctor’s recommendations, however, she doesn’t see her doctor as an outpatient for another 3 weeks.
Her breathlessness seems to be alleviated by resting right now, thankfully, and seems to be improving compared to when she was hospitalized. I am very thankful for all of these things, as there may not be a need for her to use supplement oxygen at all going forward. That being said, I’d like her to have it in the event she felt she needed it, even for a short period of time for anxiety-relief or physical need. She certainly isn’t one who would take advantage, or use it unnecessarily. That is a good idea re: having a window of error so to keep an eye on her saturations not going over 98%, as is keeping a log of her usage of it (if she needs it at all). This will help when she sees her new pulmonologist in 3 weeks time.
Thanks again for sharing your thoughts Kim, they really mean a lot to both my friend and I.
I hope you’re doing well.
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