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Wildly fluctuating o2 levels

Posted by kudzu @kudzu, Jul 16, 2022

I’m experiencing wildly fluctuating o2 levels on finger oximeter. This morning already I’ve been everywhere from 71 to 99, especially while standing still.
I went to the ER June 3 with this and they couldn’t find anything. My pft of June 3 indicated restrictive lung disease. May or may not be due to Amiodarone.
I’m going to Mayo July 27 to see a pulmonologist.
Very scary and depressing.
I know if I go back to the ER they probably won’t find anything, and I read in my medical records that my pcp has diagnosed hypochondriasis(not the case, this is really happening).
Anyone else have this?

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vic83 | @vic83 | Oct 5 7:58pm
In reply to @gdanker "I have severe hypoxemia which can fluctuate during the day and night. As far as I..." + (show)
@gdanker

I have severe hypoxemia which can fluctuate during the day and night. As far as I understand it, an oximeter is not an accurate measuring device for this condition. My lungs are badly scarred and my DLCO was 39% when I had my last breathing test. The reason is that although it shows how much oxygen is carried in your blood cells, it does not mean that that is the amount of oxygen that is utilized by your lungs. You might want to ask your doctor about this and to see if you are retaining C02.

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Following our correspondence earlier this year, while my pulmonary function tests improved when on Prednizone, after when I went off it they declined and stayed down (moderate restriction with severe gas exchange abnormality). I am now on 2L oxygen for exertion and sleep. Diagnosis is pulmonary fibrosis, pulmonary hyprtension and multifocal lung cancer.

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1 reply
micnic | @micnic | Oct 7 8:06am
In reply to @the1downs "My name is Sandy. I'm currently dealing with the same issues. The Doctor issued chest xrays,..." + (show)
@the1downs

My name is Sandy. I'm currently dealing with the same issues. The Doctor issued chest xrays, breathing test and sleep test. She said the sleep test, not only shows sleep ap, but also if your brain is not singling to breathe. Especially since it's happening during the day.
I found this interesting.
Hopefully I can find my way back with any updates. Thanks

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Thank you so much. I bet my brain is not signaling to breath sometimes!!!
I will finally follow up with a real sleep study. The O2 at night is a game changer for me!

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setagoal55 | @setagoal55 | Nov 6 1:00pm
In reply to @vic83 "Following our correspondence earlier this year, while my pulmonary function tests improved when on Prednizone, after..." + (show)
@vic83

Following our correspondence earlier this year, while my pulmonary function tests improved when on Prednizone, after when I went off it they declined and stayed down (moderate restriction with severe gas exchange abnormality). I am now on 2L oxygen for exertion and sleep. Diagnosis is pulmonary fibrosis, pulmonary hyprtension and multifocal lung cancer.

Jump to this post

Oh My Goodness after months of I have found my People. What a ride. I went to ER and had to beg for O2 as we know my levels went back up. My husband is buying me a portable O2 Thank God. I have felt so so better reading that I am not alone. Thank you all

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gdanker | @gdanker | Nov 10 10:23am

I can sympathize with you as my C20 fluctuates to extremes as well. However, I find it a little ridiculous when they say to head for the emergency room when this happens because in less time than it takes to get there, it's within an acceptable range again. However, with me, it's when I'm moving around mostly and if I just sit down, and relax my breathing, inhale regular breaths with longer exhales, I'm back within the safe zone within a few minutes and if I get on my oxygen, it's even quicker. I don't take the medication that you mention but my partner does but he's never that far from the normal range so the medication that you mention does not seem to affect him. In any case, if it is the medication, it might be a good thing for you! I mean by that, that at least you know the cause and if stopping taking it, takes care of the problem, then you won't have to worry about that anymore!

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