How does one know when one might need daytime oxygen?
Hi!
I’m new, and didn’t see this discussed anywhere.
I’ve been on 2 liters of nighttime oxygen, since 2017, when a Sleep Study (taken for high heart rate), showed my oxygen surprisingly dipped for minutes to 86.
Since then, besides having been to ten specialists over three years (all for breathlessness) and meds/treatment for contributory: 1) adult onset asthma/COPD(?), 2) chronic perennial vasomotor rhinitis, 3) presbylarynx, and 4) a beta blocker for heart rate, have all helped, dyspnea (breathlessness) still persists. Numerous PFT tests remain in the mild/medium border range.
So, confused, catching my Nonin oximeter at unusual lows 90 or 91, during the daytime (on occasion) — at times when I didn’t have any congestion from a flu or cold — had me purchase a Wellue O2 Ring (FDA approved) for overnight monitoring and recording.
Reports I can actually share are wonderful — if they’ll be believed? Since then, while amazed to see overnight has dipped lower than 88 even with the oxygen, the surprisingly worse random daytime recordings have me more concerned.
It vibrates at 88, and every day, when testing, it goes off — even as I write, now. (Obviously, it mustn’t be sleep apnea.). The worst days (all daytimes) have low O2 “scores” (between 5.0 and 7.5) — based on: 1) the depth of the low, 2) the number of drops, and 3) their duration — a number having a reading of about 20 minutes being <90.
How to interpret that? Is it serious? I read even minutes below 88 can damage one’s arteries? But pulmonologist is closed, the PCP is new, and doesn’t put much stock in the device or the overnight readings where he said the average in the 90’s was what mattered. (I just mailed him several of my color-coded daytime reports.)
How does one know if or when daytime O2 might be needed?
Thanks so very much!
Linda
Hi Linda and welcome to the community! We are glad you found your way here. I hear how much you are struggling with shortness of breath. I'm glad you are gathering data to share with your doctors. It can be a helpful way of showing patterns that they don't see from the brief snapshots they receive in the office. One of our patient leaders has written about her love and use of journals to record and track her daily symptoms to help her doctor have a better picture of what she experiences day to day. I thought these articles might be of interest to you. 1) https://copd.net/living/journal-advocate 2) https://copd.net/living/tracking-illness As far as knowing when you need to move to 24/7 oxygen use, pulmonary function testing (PFT), arterial blood gas (ABG), and the 6-minute walk test are often tools doctors use to help guide those decisions. We have articles about PFT and ABG and the American Lung Association has one about the 6-minute walk test. 1) https://copd.net/clinical/what-is-pulmonary-function-testing 2) https://copd.net/clinical/what-is-an-abg 3) https://www.lung.org/lung-health-diseases/lung-procedures-and-tests/six-minute-walk-test
Additionally, I thought these articles about signs for needing supplemental oxygen and why you can continue to experience breathlessness while on oxygen might be of interest to you. 1) https://copd.net/living/supplemental-oxygen-therapy 2) https://copd.net/clinical/breathlessness-vs-oxygen-saturationI know I threw a lot of resources at you! I hope some of them might be useful. Bottom line is to continue to communicate with your doctor, share your concerns with your breathing and oxygen levels, and ask for more conclusive tests to help determine if you need to begin using daytime oxygen as well. Keep up the great work advocating for yourself and providing as much information to your doctors as you can. You know your body best. If your doctor is not listening or responsive, remember you are within your right to seek out a new provider/second opinion! Please keep us posted on how you are managing and what transpires! Wishing you a gentle day. ~Allyson (team member)
Your many links are much appreciated, Allyson. So many areas. Your most thoughtful. Thank you. I’ll be sure to get through them. （╹◡╹）
My oxygen never got low on the 6 min walk. I was still put on oxygen though. Now I cant do a 1 minute with oxyge, Everyone is different. A good thing to tell your doctor, is that you have been sitting and waiting, and that is not your usual day. Could also try running on the spot while waiting, so he can see what is happening.
My regular very good lady Doc said if I feel the need to use my oxygen when heartrate is high, from maybe making coffee or something minor, use the oxygen. Said rapid heart rate is just a sign of needing more oxygen than you can breath in yourself. I also wear my oxy at night. You dont want to get Hypoxemia. You will be a little dizzy and realize you need 911. Dont hesitate to call. I barely made it to the hospital, then didn't come too till the next day in ICU. Really knocked the breath out of me and took a month to get a little better. I can be at 97 in the day, and still need a quick oxy boost. I have checked so many sites, but although Docs are good, unless they have been through what we are going through, it is hard for them to completely understand.
Hi again,
- thanks for chiming in to this conversation. It sounds (to me), like you have a good understanding of your particular level of disease and understand how to manage oxygen therapy to treat your symptoms. Having the doctor's support of you on this makes all this all the better.
Keep up the good work!
Leon L (author/moderator)
