Old 08-08-2018, 01:50 PM #1 (permalink)
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Default Pulse oxygen question

I was under the impression from reading on this forum that breathing problem in ALS don't affect oxygen saturation, only CO2. Was at the hospital for several hours today to deal with a port issue. The nurse noticed my oxygen saturation would go down to the 80s (lowest was 81) then a few minutes later back up to 90s, where it hovered around 95. Then after a while it would drop again, then go back up again. She asked if I've experienced this before and if it is normal for ALS.

This has never happened to me before, in the past it has always been 100.

Thoughts??
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Old 08-08-2018, 02:51 PM #2 (permalink)
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Default Re: Pulse oxygen question

Were you feeling air hunger when it dropped?

When breathing is compromised O2 is affected certainly. But what we have always said is that O2 is not the issue as such. What this means is that if they treat this drop in O2 sats by giving O2, then instead of breathing more deeply, you will breathe even shallower as the O2 is being delivered to you and your CO2 will build up even more.

You see if your O2 is dropping, your CO2 will be rising as you are not breathing effectively enough. For this reason, by treating the O2 drop in the traditional way, you can cause the CO2 to rise even more and this can even be fatal.

A drop in O2 is good indication that you should pop your bipap on and you will see your O2 sats rise. If use of the bipap fails to bring O2 sats up enough, then over time it may be that O2 is introduced into the bipap. Some PALS require a little O2 with their bipap. This is totally different to simply putting a PALS 'on oxygen' which is the dangerous situation.

I hope that all makes sense.
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Old 08-08-2018, 02:54 PM #3 (permalink)
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Default Re: Pulse oxygen question

first thought was error in the reading. When my bipap off more than a few minutes mine drop to 93 and it is hard to breathe. Normally is 95 or higher.

can't imagine what eighty would feel like
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Old 08-08-2018, 03:04 PM #4 (permalink)
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Default Re: Pulse oxygen question

Error is possible but coupled with our previous discussion I think you really need to talk to your clinic about your breathing issues. If you are having compromise bipap will make you feel better and likely stabilize your weight.

If you already talked to them let them know about this. Overnight oximetry might given you the data insurance needs
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Old 08-08-2018, 03:25 PM #5 (permalink)
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Default Re: Pulse oxygen question

Well, the nurse wondered about error and re-affixed the sensor more tightly, but the same issue still occurred. I was not more out of breath than usual. I don't know what air hunger is/feels like. I get a little out of breath when talking, but otherwise I don't feel out of breath. My FVC has dropped lower but I was again surprised by this because I don't feel out of breath. Could anxiety affect O2 saturation? I was mildly anxious due to the procedure they were getting ready to perform (threading catheter thru my groin).

I also wondered if fasiculations could cause an incorrect reading? Like how BP machine gets confused by fasics and will give numbers that are way off.

But Nikki, you're right, given the weight loss and lower FVC I will definitely email Dr Owegi today and let her know.
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Old 08-08-2018, 03:44 PM #6 (permalink)
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Default Re: Pulse oxygen question

Anxiety and fasciculations should not affect oxygen saturation.

Low O2 sat can result from hypoventilation (which also results in high CO2) and is usually corrected with BiPAP or a ventilator.

Low O2 sat can also result from lung infections, mucus plugs, pulmonary emboli (clots), poor posture (resulting in decreased chest expansion), severe airway obstruction, airway collapse, and anything that causes scarring or inflammation in lung tissue.

The problem with administering oxygen to PALS is that oxygen decreases drive to breathe, resulting in more hypoventilation. It can be administered with caution if someone is on invasive or noninvasive ventilation.
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Old 08-08-2018, 04:46 PM #7 (permalink)
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Default Re: Pulse oxygen question

I would opt for an arterial blood gas draw and an overnight oximetry.

The huge rise and fall seems suspicious. Do you have a home oximeter? You can buy a cheap one in Walgreens that works just as good as the ones in the hospital.

I had one incident at my local neurologist's office and it was due to faulty equipment.
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Old 08-08-2018, 06:50 PM #8 (permalink)
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Default Re: Pulse oxygen question

I live in the low 90s fairly consistently. My RTs have been recommending 02 for a while. Every time they send the recommendation to the ALS Clinic they are scolded and corrected. NO O2 for ALS patients! It only masks the fact your CO2 is too high. The treatment is to change settings or increase use of Bipap. The issue isn't getting more O2, the issue is getting more air in and out of you lungs.

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Old 08-08-2018, 06:56 PM #9 (permalink)
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Default Re: Pulse oxygen question

Agree with Nikki, Kristina, from all that you've said, you should be on BiPAP.
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Old 08-08-2018, 07:02 PM #10 (permalink)
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Default Re: Pulse oxygen question

I didn't realize you were not already on bipap. Definitely sounds like it's time.
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Old 08-08-2018, 09:11 PM #11 (permalink)
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Default Re: Pulse oxygen question

I admit I forgot you hadn't started on a bipap yet either which is why I was talking about using your bipap as the correct strategy.
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Old 08-08-2018, 09:42 PM #12 (permalink)
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Default Re: Pulse oxygen question

Thank you all for the feedback. I emailed my neuro and cc'd the pulmonary NP from Clinic. The NP wants me to come in for more PFT (i guess more than just my fvc) next week to assess. She is the one who advocated bipap at my last visit but said insurance wouldn't cover it just yet (my supine fvc was 64, she said they want 50 or lower).
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Old 08-08-2018, 10:11 PM #13 (permalink)
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Default Re: Pulse oxygen question

Kristina,
That's just not right. You need it when you need it regardless of what the numbers say. I'm sure my FVC was in the high 70s when I got mine.
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Old 08-08-2018, 10:54 PM #14 (permalink)
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Default Re: Pulse oxygen question

The 50% thing is sometimes mistakenly presumed, depending on your plan. For example, Aetna calls for ABG PaCO2 of 45 or more, sleep oximetry showing 88% or less for 5 minutes within at least 2h, MIP <60 OR FVC <50% of predicted. Any of those works.

And again, your dx makes the letter of medical necessity route, if needed, much more likely to be effective than in many other dx. But if you are de-sating like that when awake, sleep oximetry should be a slam dunk, even if your MIP is 60+.
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Old 08-09-2018, 12:47 AM #15 (permalink)
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Default Re: Pulse oxygen question

Kristina I think last time this came up someone wisely suggested you don't try terribly hard on those tests - that'll get the numbers in the range needed
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