Home Sleep Study - Low AHI but significant desat

[ArcherNeedsSleep]

Hey everyone - still doing really well.  Getting much better sleep with good SpO2 sats and starting to feel like myself again.

I wanted to relay some info from my referral pulmonology appointment this week.  It was an interesting appointment where the doctor said that there's nothing wrong with my lungs (yay!), and that he thinks I have a higher AHI than indicated on the home sleep study and that's what was causing the desats.  However, he wasn't willing to advocate for insurance coverage without sending me for an expensive in-lab sleep study, so I politely told him no thank you and moved on.

The funny thing was that I took in my data card from the CPAP and he had his assistant run a report - and that report was pointless!  It was a one page summary listing the settings and a compliance chart showing the AHI for each day of the past month.  That's it.  Nothing useful.  When I started mentioning the "full data", he gave me a deer-in-the-headlights look, so I stopped talking.  It wasn't worth the breath.

His feedback was that my primary care doctor (who was supportive but very skeptical of the CPAP treatment to fix the desats) gets a gold star for putting me on CPAP and apparently selecting the correct settings on her first try!
 

He wants me back in a year to check the settings and make sure they're still correct.  
A year.  Can you imagine going a full year if the settings weren't working right.  That's a recipe for quitting treatment, right there.  That was the last straw for me.  I won't be seeing him in a year, that's for sure.  

So....to everyone on this board who helped me build an effective argument to convince my pcp to write the CPAP prescription, and then followed up with guidance on how to get the settings right...you all get a gold star from the pulmonologist.  

 

And you get a big thank you from me.  Truly, you have all improved my life.

[SarcasticDave94]

Yup a yearly checkup surely keeps your PAP therapy on track. He makes the big boat payments and can't be bothered more than yearly. Would telling Dr. Dolittle to hold his breath till next visit be cruel and unusual punishment?

Anyway glad the therapy is on track. Check in next year... Or if an issue crops up.

[Ratchick]

Wow. LOL And I thought things were bad here. At least the sleep clinic actually LOOK at the extended data and contact me regularly to make sure things are working (as well as providing phone and email support too). Shame my doctor is still AWOL TWO MONTHS after agreeing he needed to speak to me. *rolls eyes*

I'm so glad everything is working out for you now though. Congrats!

[Mtngrace]

When I was de-sating, my body compensated by making more red blood cells to transport oxygen. "Long-term exposure to low oxygen levels causes secondary polycythemia. A lack of oxygen over a long period can cause your body to make more of the hormone erythropoietin (EPO). High levels of EPO can prompt your body to make more red blood cells than normal." The treatment is removing a pint of blood on a regular schedule to prevent clumping which may cause a heart attack.



I am curious about this as my labs always show slightly elevated hematocrit, rbc, and hemoglobin. I also live in 6200 feet altitude. If it’s slightly elevated is that bad too?

[ArcherNeedsSleep]

I’ve been visiting this site semi-regularly for the past couple of years to stay connected but haven’t needed to post anything new about my situation since things were fairly stable.  Unfortunately, I’ve recently had some changes in my treatment results that I want to run by the smart folks here.  I think I probably know the next step but want to see if I’m missing anything first.


Quick recap:
-         My AHI has always been below 5.  My O2 is the issue – it likes to drop into the 80s for significant portions of the night.
-         I initially started CPAP in an attempt to avoid nighttime supplemental oxygen.  It worked for a good couple of years, with my O2 saturation remaining in the low 90s for most of the nights.
-         I live at 7300 feet.  This is definitely a major part of the issue.
-         I am early 50’s.  I’m slightly overweight, but I’m physically fit and active.  I don’t have any breathing issues during the daytime.

In the past few months, my sleep has deteriorated.  I started waking up with headaches again, which quickly transitioned to multiple wakeups throughout the night.  My AHI was still low, with only a few centrals showing up, so I suspected the oxygen issue was coming back.  I did notice that flow limits had increased slightly over time, so I worked on those first. My Wellue ring’s battery had completely died and wouldn’t recharge, so I tried a few things to address the issue without true insight to the oxygen levels, until I could get a new ring.

Here's what I tried, and the results:
-         Increase max pressure. I did this slowly, over the course of a few weeks, but each 0.2 increase in pressure caused aerophagia issues.  By the time I reached the level where my flow limits were measurably reduced, I had triggered horrible aerophagia. It was so bad one of the nights that I passed out from the pain as I tried to walk to the bathroom.  The headaches didn’t improve, plus the pain was intolerable, so I dropped the pressure back down and gave up on that approach.
-         Decreased EPR.  I thought the CAs might be triggering my headaches, so I decreased the EPR to reduce the CAs.  This change also increased Aerophagia, and didn’t fix the headaches, so I abandoned it, too.
-         CPAP mode.  In my ongoing research efforts, I watched Lanky Lefty’s videos and picked up on the idea that the changing pressure from APAP mode could be causing both the aerophagia and the centrals.  Fixed CPAP mode was the suggested fix.  I tried it at a few different pressures within my typical range.  It did nothing for the aerophagia or the CAs.  Plus, the flow limits were significantly higher, so I reverted to the APAP settings.  (I also broke down and tried his silly V-com recommendation….that was $20 wasted.  It added obstructive apneas that had never been there before, without improving any of the other issues.)

I now have a new Wellue ring and have confirmed that my O2 sats are, indeed, in a bad place. Most nights I spend 50% of the time below 90%.  After trying to fix the flow limits, and not seeing any improvement in the oxygen levels, I’m trying to identify the next step, and asking for help.


1)     Is there anything I’ve missed with the current machine that would be worth trying before I move to the next steps.
2)     What is the next step?  My assumption is that I need to add supplemental O2 at this point.  But is there another option that I should consider?
  a.     Note that I am doing all the CPAP stuff out of pocket because no doctor was willing to back me up with the insurance companies with my low AHI.  But…supplemental O2 seems to be more expensive, and I feel like I need to move things into the insurance world if I go that way.  (I would feel the same, if the recommendation is for a different, more expensive machine.)
  b.     So, if the recommendation is for either O2 or a new machine, I would love a recommended set of data and arguments that might win over a doctor and convince them to fight for me with the insurance company.

As always, thanks for taking the time to read my novel, and for any ideas you may have that could move me forward on this journey.

(Oscar screenshots are attached – I needed to generate a top and bottom screenshot to cover everything, since my screen is small and can’t show all the pertinent data at once.)

           

[Sleeprider]

It's been almost 3-years since this thread showed up. With your persistently low SpO2 saturation, you should seek professional diagnostics and supplemental oxygen. Your SpO2 saturation has dropped from a median of about 93 to under 90 in this most recent chart (the median SpO2 statistic is cutoff). What's important is the period of time below 88%, which is the threshold for Medicare and most insurance, and you have quite a lot. I don't know if your low SpO2 is all the time, or only as you sleep. It's likely you will need to wear a medical grade monitor to make that determination, but assuming this is strictly nocturnal, that would make a stationary (non-portable) oxygen concentrator a more likely choice.

Before we go that route, I think you have another option. Your oxygen levels were better three years ago. Your tidal volume and minute vent was also higher then and you did not show an inverse inspiration/expiration time ratio. Based on what I'm seeing here, the easiest solution for you will be to request a prescription for bilevel PAP like the Resmed Aircurve 10 Vauto. The objective with the Vauto would be to improve on tidal volume by using pressure support to overcome all residual flow limitation and provide a mechanical assist your good spontaneous respiratory efforts.

Bilevel is easier to titrate to improve SpO2 and respiratory volume. Basically, we elevate the minimum EPAP upwards to increase the positive end expiratory pressure (PEEP), which with mechanical ventilation helps to recruit more lung volume and increase the partial pressure of oxygen to promote better gas exchange in the lungs. Secondly, the pressure support is used to improve ventilation, resolve flow limitation, RERA, hypopnea and upper airway resistance. The Vauto also has an adjustable trigger sensitivity which we can leverage to limit or eliminate the CA events from that improved ventilation. Your current statistics show your inspiration time exceeds expiration time. This is consistent with inspiratory flow limitation and is also resolved with higher bilevel pressure support.

You should be able to ask your doctor to prescribe bilevel positive air pressure to replace CPAP based on how you feel, but also because of the technical issues I pointed out above. This does not require further clinical testing! Discuss your issues with your doctor, and use your charts to show how your condition has progressed from both CPAP efficacy and SpO2 points of view. The clear solution is to move to bilevel to improve every aspect of your therapy, and to reserve judgement on supplemental oxygen pending the outcome of your bilevel trial. Many members of this forum have recently upgraded to bilevel based on simply not getting optimal CPAP treatment and having typical symptoms of fatigue, sleepiness and other issues. This thread by Deborah K shows how she was not improving and got approval. https://www.apneaboard.com/forums/Thread...to-Bilevel

Start with that, and let me know your questions or if you want to proceed out-of-pocket. The Resmed Aircurve 10 card to cloud version is available for about $1000 new, or much less used.

[ArcherNeedsSleep]

It's been almost 3-years since this thread showed up. 

Three years?  It seems like just yesterday! 

Thank you so much for the response.  That's the kind of info I was hoping to receive since I couldn't puzzle it out myself.
Also, thank you for the link to Deborah K's thread. I just read through all of the posts and learned a lot.  (Admittedly, I copied a good chunk of her preparatory material to use for my upcoming doctor's appointment.) It seems that us Colorado residents have a lot of breathing challenges!

I'll shoot for the bilevel first and hope it resolves the issue.  Maybe I'll get some increased tidal volume as part of the deal.  That would probably help me when I'm hiking in the mountains.  

[Sleeprider]

For the purposes of prescribing bilevel, your doctor can write the prescription for a Resmed Aircurve 10 Vauto (#E0470), Vauto Mode, EPAP min 8.0, IPAP max 15.0, PS 4.0. We will take it from there and likely change trigger sensitivity to high, and fine tune PS to optimize. You can take that script anywhere you want.

[ArcherNeedsSleep]

Whoop, Whoop!

The doc wrote the prescription for the Aircurve during my appointment this morning.  She's working with her assistant to find the most reasonable DME to send it to.  (I really don't want to go deeply out of pocket again, so I'll let this work through the insurance quagmire for a short period of time before I get too impatient.)

She is also starting the process for approval of supplemental oxygen but isn't going to push it all the way through until after I've started on the Bilevel.  If the bilevel improves my SpO2 enough, we may not need to do the oxygen yet.

Sleeprider, thanks for the assist as usual.  The doc said that I was clearly working with an expert on the topic, and she was correct. 

[SarcasticDave94]

Don't let the VAuto order go stale. Give them a week or so at most. It's not like the DME has to manufacture the machine, they just need to issue after insurance paper stacks.