Kaiser home titration, post TBI, sleepyhead?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
CRM
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Kaiser home titration, post TBI, sleepyhead?

Post by CRM » Sat Aug 29, 2015 8:31 pm

Hi again.
I'm looking for help with my nephew today. He was in a freak accident in January and suffered injuries to his brain stem and left frontal lobe. Coma for a couple weeks, trach for at least three weeks. Still struggling to recover from the TBI but in great physical shape.
Wife noticed gasping for breath post accident so doc scheduled the standard Kaiser home sleep study. I have no idea what those results showed but he was sent home with a S9 Autoset straight CPAP for a week for titration. No modem but has the SD card. Info screen seems to only show hours used. Was provided a Wisp nasal mask.
Question... Can I run the SD card through Sleepyhead in a couple days without screwing up Kaisers ability to read it? If his apneas are primarily centrals, I'm wondering why he should endure another 5 nights of this home study for naught? But I don't want to mess with it so much that Kaiser would make him do it again.
I'm not terribly impressed that Kaiser would run him through the standard process considering his current health status.
Appreciate any help.

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Pugsy
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Re: Kaiser home titration, post TBI, sleepyhead?

Post by Pugsy » Sat Aug 29, 2015 8:42 pm

Yes, you can download the data to your SleepyHead program without it affecting the SD card contents as long as you remember to write protect the SD card.
Some computer operating systems (macs and Windows 8.xx and Windows 10) put a little file on the SD card when it gets inserted into the computer and while that little file doesn't really hurt the SD card the presence of that little file will make the S9 machine not want to accept the SD card and thus won't continue to put data on that SD card. The S9 will force essentially a reformat of the SD card and past detailed data files will be lost.

So just write protect/lock the SD card before putting it in your computer and unlock it before putting it back in the S9 and no one will ever know you looked at it unless you tell them.

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Re: Kaiser home titration, post TBI, sleepyhead?

Post by CRM » Sat Aug 29, 2015 8:50 pm

Thanks so much Pugsy! I can handle that.
If sleepyhead does indicate that his apneas are central, not obstructive, do you think I'm on the right track in advocating for him and asking their sleep medicine folks to go straight to plan B? He's got enough crap to deal with, I don't want to let him go down a dead end just because it's their "protocol".

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Re: Kaiser home titration, post TBI, sleepyhead?

Post by ramblingasian » Sat Aug 29, 2015 9:02 pm

CRM wrote:Thanks so much Pugsy! I can handle that.
If sleepyhead does indicate that his apneas are central, not obstructive, do you think I'm on the right track in advocating for him and asking their sleep medicine folks to go straight to plan B? He's got enough crap to deal with, I don't want to let him go down a dead end just because it's their "protocol".
I wouldn't risk the insurance company denying your nephew a machine over not using the APAP for a week of time. It will take that long to get a baseline of whether the apneas are central or not. One night's results aren't going to make or break a diagnosis.

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Re: Kaiser home titration, post TBI, sleepyhead?

Post by Pugsy » Sat Aug 29, 2015 9:09 pm

From what I understand about Kaiser they have one way of doing things and think their way is the only way. Very rigid.

Let's see what the data shows first.

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Re: Kaiser home titration, post TBI, sleepyhead?

Post by CRM » Sat Aug 29, 2015 9:17 pm

Indeed, they have a system. Works for the most part, if you're healthy.
The RT who lead the class was at least aware enough to notice that my nephews case wasn't their garden variety OSA patient. She was transparent enough to make me aware that I could request a 1:1 session for him to evaluate the best testing and treatment, especially if he might need an ASV.

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Re: Kaiser home titration, post TBI, sleepyhead?

Post by Pugsy » Sat Aug 29, 2015 9:23 pm

Check the data first so you have needed ammunition and then simply ask if you see very many centrals...ask to move things to the special case category. If you/he doesn't ask the answer is always no.
They may not want to trust SleepyHead results if they aren't aware of SleepyHead as they probably use ResScan...do you have ResScan available?
If not, send me a PM and I will get you pointed to where you can get it.

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Re: Kaiser home titration, post TBI, sleepyhead?

Post by CRM » Sat Aug 29, 2015 9:38 pm

Thanks Pugsy. Sent a PM. I appreciate the advise and know that I'd be a more effective advocate if I can work within their rules. This kid has been through a lot and doesn't deserve to fall into the cookie cutter process.

CRM
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Re: Kaiser home titration, post TBI, sleepyhead?

Post by CRM » Sat Aug 29, 2015 10:54 pm

Besides what Dr. Google says, is anyone aware of TBI causing SDB? Or long term tracheotomy leading to same?

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Re: Kaiser home titration, post TBI, sleepyhead?

Post by 49er » Sun Aug 30, 2015 3:36 am

CRM,

As an FYI, a good friend had one of those typical auto titration tests through Kaiser and when they looked at her results, sent her for a full scale sleep study. Not sure why since she didn't have central apneas but maybe they will do that in your son's case, particularly if you are closely advocating for him as you appear to be doing so?

Hopefully, it won't come down to this but when I had Kaiser many years ago, I ended up contacting the patient rep's office because I was not satisfied with my care. Situation got resolved very quickly.

So maybe this strategy can be in your backpocket in case you don't get the care for your nephew that that you are looking for? Again, hopefully, this will not be necessary.

Best of luck as your nephew is lucky that you are advocating on his behalf.

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Re: Kaiser home titration, post TBI, sleepyhead?

Post by Janknitz » Sun Aug 30, 2015 8:19 am

This is one example of when Kaiser is trying to put a square peg in a round hole. A home sleep
Study/titration is not appropriate for a tbi. But if his apnea is not well treated with the titration machine it will show in the data and they will bump him up to an in lab titration.

Unfortunately with Kaiser you have to jump through their hoops. I often do file complaints (bypass their internal system and go through the adept of Managed (we don't) Care because they can't fail to respond). At least it gets their attention.
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49er
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Re: Kaiser home titration, post TBI, sleepyhead?

Post by 49er » Sun Aug 30, 2015 8:36 am

Janknitz wrote:This is one example of when Kaiser is trying to put a square peg in a round hole. A home sleep
Study/titration is not appropriate for a tbi. But if his apnea is not well treated with the titration machine it will show in the data and they will bump him up to an in lab titration.

Unfortunately with Kaiser you have to jump through their hoops. I often do file complaints (bypass their internal system and go through the adept of Managed (we don't) Care because they can't fail to respond). At least it gets their attention.
Thanks Jan, for confirming that if Kaisers spots problems with the titration, they will bump someone to an in lab titration. Kind of sad though they insist on putting a square peg in a round hole which wastes alot of time for the poor patient like the nephew with TBI.

I was actually able to get a doctor to do my surgery who had been recommended who allegedly wasn't taking any more patients. Can't remember what I said to the patient rep but it obviously worked. And I sailed through it compared to my hospital roommate who had the procedure performed the way my first two doctors recommended which didn't make any sense to me.

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CRM
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Re: Kaiser home titration, post TBI, sleepyhead?

Post by CRM » Sun Aug 30, 2015 9:21 am

Thanks for the feedback. It's clear that he got put into the wrong assembly line for this issue.
Although the care he received at the Inpatient rehab was outstanding and well coordinated, the outpatient care is less than well coordinated. Appreciate the tip on the patient rep. I'm going to need to get "involved" with his primary care office and make sure someone is actually managing his overall care. He shouldn't have been in that titration "class" and his sleep study follow up should have been better routed.
The only info the screen on this machine is providing is hours so I'm going to sneak a peek at his data either today or tomorrow.

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Re: Kaiser home titration, post TBI, sleepyhead?

Post by SewTired » Sun Aug 30, 2015 7:55 pm

CRM wrote:Hi again.
I'm looking for help with my nephew today. He was in a freak accident in January and suffered injuries to his brain stem and left frontal lobe. Coma for a couple weeks, trach for at least three weeks. Still struggling to recover from the TBI but in great physical shape.
Wife noticed gasping for breath post accident so doc scheduled the standard Kaiser home sleep study. I have no idea what those results showed but he was sent home with a S9 Autoset straight CPAP for a week for titration. No modem but has the SD card. Info screen seems to only show hours used. Was provided a Wisp nasal mask.
Question... Can I run the SD card through Sleepyhead in a couple days without screwing up Kaisers ability to read it? If his apneas are primarily centrals, I'm wondering why he should endure another 5 nights of this home study for naught? But I don't want to mess with it so much that Kaiser would make him do it again.
I'm not terribly impressed that Kaiser would run him through the standard process considering his current health status.
Appreciate any help.

A head injury should have REQUIRED a in lab study, not a home study. A home study does not adequately mark centrals, which are common in head injuries and stroke victims. Someone needs to advocate for the nephew who is getting subpar treatment.

Also, this link is helpful for other TBI stuff. http://www.tbiguide.com/

I had to relearn to read on my own (no help from any professionals), but Whispersync on a Kindle Fire (books and audio) can be really helpful retraining the brain. You use different parts of the brain to read and listen.

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Re: Kaiser home titration, post TBI, sleepyhead?

Post by chunkyfrog » Sun Aug 30, 2015 8:07 pm

If the apnea did not exist before the TBI, then it sounds like Kaiser is behaving in an unprofessional manner.
It may be faster to jump through the hoops and get this done than fight it--unless you can get the attention
of someone they will listen to.

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