[Diagnosis] New Member Sleep Study Results: AHI 102!

[Rogueshot]

It does make a huge improvement. Some things happened quickly and others slowly over time. Initially I felt more tired for a couple weeks. Ironic that better sleep made me feel more sleepy. But I started feeling much more rested, better attitude, more energy, less waking up with my heart racing.

I do say it took time to get used to it. You may have to figure out the best position to get the best results, work through the desire to rip off the mask, and there can be other struggles but you will realize how poor of sleep you've been getting once you start having quality sleep.

[Lucid]

Hi, Gathermewool  When you call your doctor to request your sleep study data, perhaps you could update them on the long 13+ week timeline from the supplier and request a prescription that you could use with another supplier to get a rental machine and starter supplies with your HSA funds?

[Gathermewool]

Thanks for the responses, guys. My pulmonologist’s office is pretty awful. I’ve requested my Rx and sleep study data, but haven’t heard back yet. I’ll try other options on their automated system and see if I can actually reach someone or increase my chances of getting a call back.

My PCP again denied my request for a new referral, so there’s that. Maybe after I get situated things will change.

A couple of positive updates, however:

1. I was able to find out from J+L that the Rx specifies either a ResMed Airsense 10 or 11, which sounds promising. It’ll still be 12-14 weeks of wait time, though.

I asked if I can request extra parts or features in advance and was told no. I’ll have to figure out how often insurance will replace things and go from there. I also need to research things I’ve been told about, like warmers and such, since it’s not clear if that comes standard.

I also happened to mention an ozone cleaner and the rep for J+L laughed and said absolutely don’t use one, that it would void the warranty. Maybe a newb mistake to ask the supplier about aftermarket cleaners, but all well.

2. My buddy had an old Somnetics Transcend unit with a new Philips Respironics Amara View hose/mask for me to try. I’ll have to Google info on it before using, but it may be something and I’ll take anything that might help! All I see as a potential model number is 103215 Rev A w/ power source model PSA1. From a cursory inspection and briefly plugging it in, it appears to have a manual adjustment button.

I’m off to figure out how to use this Transcend doohickey, but wanted to provide a quick update and another thank you.

[Gathermewool]

So, last night was…interesting.

My Fitbit shows that I was asleep for 5:10 hours last night and that I got 1:39 hours of REM, 35 min of deep sleep. That’s the best recorded since I started recording several months ago by a lot. Many nights my Fitbit wouldn’t even record my sleep or wouldn’t be able to collect enough data due to waking up frequently. On days when I really sleep in hot to 10+ hrs I haven’t recorded much more than an hour of deep and REM combined.

One data point, I know, but it’s enough of a change to be somewhat noteworthy.

Another thing to note is that I sleep best on my side, for obvious reasons. Last night, because the Transcend power cable and mask hose are so short I had no choice but to sleep on my back the entire night. So, theoretically, it should have been worse.

Now, I still felt groggy when I woke up and my level of fatigue/tiredness hasn’t changed much, I think I feel pretty good/alert today. It’s way too early to draw any conclusions, but I’m actually cautiously optimistic.

[clownbell]

During COVID, DMEs seemed really hesitant to do rentals because of the possibility of contamination. Add to that the supply chain problems, plus the shortage of machines due to the massive recall of Philips machines (causing demand to surge), and you can see why machines were hard to come by. ON THE OTHER HAND, things "may" be getting better. Our daughter just obtained her ResMed Airsense 11 AutoSet in 8 weeks. Pre-COVID, machines were pretty much available on demand. Try Hart Medical as Gideon has suggested; they seemed to have stock on hand.

BTW, it is your right under HIPPA to get a copy of all your medical records. Don't let em push you around. Refer them to 45 CFR § 164.524 and demand your legal rights.

[Gathermewool]

Thanks for the info, clown bell.

Update: the borrowed Transcend CPAP isn’t working out very well. After the first two nights of middling results I’ve found myself having issues constantly finding nearly zero pressure to my face and trying to adjust the mask over and over.

In the middle of the night I’m there messing with things, turning the CPAP off and then back on, feeling the hissing of air flow past the mask, but never finding a good fit to appropriately pressurize my face. Even when I feel like it’s OK I find that I’m getting inadequate pressure to do anything.

The CPAP seems to act more like what Im reading a BPAP should do. I hear the fan ramp up in to match my in breath and then slow down as I breath out.

Finally, the borrowed kit came with a humidifier, but not the hose, so even when it seemed to work for the first couple of nights I woke up with a sore tongue and really dry mouth, as bad as my worst night of mouth breathing.

Oh, and I forgot to mention the only hose it came with is VERY short. I’m pretty much stuck with the darned machine on my chest. This has led to major neck pain, because I’m stuck sleeping in one position all night long.

The end result is I ripped the mask off because it’s not only NOT doing anything positive, but it’s uncomfortable and makes breathing more laborious.

A couple of nights ago, night three, my Fitbit didn’t register enough sleep to provide a sleep score even. With OUT the CPAP last night, what would have been night four, I tossed and turned and, while I didn’t wake up with massive neck pain and dry mouth issues, I really didn’t sleep. My Fitbit registered some sleep, but the score was terrible.

I’m going to try to order more parts online while I wait for some help and suggestions from you guys.

If you do have some recommendations, please do NOT feel the need to spare my feelings. Explain things like I’m an idiot. I’m an engineer, but have ZERO experience with this.

[Gathermewool]

Please see the attached. Thoughts?

Rx: “Please set patient up with an AutoPap teamed with setting 5/20 and heated humidifier with best fit mask. Please supply patient with all necessary supply with this new setup…Thank You URGENT PLEASE”

The Rx states that’s it’s urgent in the Test Notes section, but the Urgency box shows “Routine”. What gives with that?

My pulmonologist sent my Rx/order to J&L. I spoke with a J&L rep and he said that the Rx requests an Airsense 10 or 11 and that the expect time to get one is 12-14 weeks. I don’t see the Resmed unit listed anywhere on the paperwork I have. 

I’m going to attempt to buy my own CPAP in the mean time from [DME Link Removed] Supplier #1 . Would it make sense to keep the J&L order and spend my own HSA money on a portable unit or try to purchase the same Resmed units mentioned above and cancel with J&L?

All advice is welcome. 

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As an aside, I have an old Transcend unit (and new mask) my buddy had and it’s not working out very well. A couple of nights it seemed to work OK and my Fitbit picked up on more deep/REM sleep than I bet before. The rest of the tike I feel like it’s not don’t anything at all and I’m waking up constantly to adjust the mask. It’s just not reliable for one reason or another.

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Moderator Action: DME Link Removed

To maintain our status as an educational organization, links to DME-owned or DME-operated websites and links to pages that sell prescription-required items are prohibited in forum posts. This is stated in the Apnea Board Rules.

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