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[Pressure] Help for a newbie: titration failed
#1
Gross 
Help for a newbie: titration failed
I just got the results of my first sleep study. I have severe OSA. They titrated me with a CPAP to a pressure of 17, but it didn't decrease my AHI. I emailed my PCP, who replied, "You have sleep apnea and you need a CPAP. I'll order it and you can come pick it up in a week or two."

I am not happy with this response. After a week of researching OSA and CPAPs (this board is awesome, by the way!), I suspect I know more than she does about it. How can I best advocate for myself?

I have good insurance, no copay or deductible, but I know they'll want to give me the cheapest machine possible. I am not able to pay out of pocket.

My PSG report summary is below (it's all I have access to for now). I'm pretty sure I understand all of it, but I may be missing some nuances of what the implications are.

Any advice would be very much appreciated.


Age: 44 ESS: 6/24 Neck Circ. (cm): 37.0
Height (cm): 167.6 Weight (kg): 87.3 BMI: 31.1

Sleep history: The patient is a 44 year old female with a history of snoring,
waking up with dry mouth or sore throat, multiple awakenings from sleep,
excessive daytime sleepiness, and fatigue. A split-night polysomnogram study
was performed. The patient endorses being a habitual side sleeper.
Sleep procedure: PSG w/CPAP or Bilevel PAP 4 or > addtl param PC (95811)

Procedure: The study was attended continuously by a sleep technologist. The
monitored parameters included: left (E1-M2) and right (E2-M1) EOG, frontal
(F3-M2 & F4-M1), central (C3-M2 & C4-M1) and occipital (O1-M2 & O2-M1) EEG,
mental and submental EMG, left and right anterior tibialis EMG, single ECG
waveform, snoring, continuous airflow with thermistor, nasal pressure
transducer, and PAP Interface, chest and abdominal effort, oxygen saturation,
ETCO2, and body position via video monitoring.

Hypopnea definition: The peak signal excursions drop by = 30% of pre-event
baseline using nasal pressure (diagnostic study), PAP device flow (titration
study) or an alternative hypopnea sensor (diagnostic study). The duration of
the = 30% drop in signal excursion is = 10 seconds. There is a greater than
or equal to 4% oxygen desaturation from pre-event baseline.
Respiratory Effort Related Arousal (RERA) definition: 10 seconds
characterized by increasing respiratory effort or by flattening of the nasal
pressure or PAP flow waveform leading to arousal from sleep when the sequence
of breaths does not meet criteria for an apnea or hypopnea.
Respiratory Disturbance Index (RDI) definition: RDI = (#apneas + #hypopneas +
#RERAs) x 60 / TST. If AHI is 0.0, then RDI = RERA index.

SLEEP ARCHITECTURE:
The study started at 22:58:25 and ended at 07:07:55. Total sleep time (TST)
was 246 minutes resulting in a sleep efficiency of 56.6% (total recording
time (TRT) = 435 m). There were 27 awakenings with a total time awake after
sleep onset of 98.0 minutes. The sleep latency was 88.0 minutes and the REM
latency was N/A. The patient spent 100.0% of sleep time in the supine
position. The sleep stage percentages were 12.0% stage N1, 83.7% stage N2,
4.3% stage N3 and 0.0% REM sleep. There were 188 arousals, resulting in an
arousal index of 45.9. There were 108 stage shifts.

BASELINE RESPIRATORY DATA:
Snoring was noted. There were 46 respiratory events consisting of 2 apneas [2
obstructive (100.0%), 0 mixed (0.0%), and 0 central (0.0%)], 38 hypopneas
and 6 RERAs. The patient spent 100.0% of baseline sleep time in the supine
position. The apnea-hypopnea index (AHI) was 56.5, the respiratory
disturbance index (RDI) was 64.9, and the central-apnea index (CAI) was 0.0.
The supine AHI was 56.5. The non-REM AHI was 56.5 and the arousal index was
45.2. The mean oxygen saturation was 93.0%, with a minimum oxygen saturation
of 86.0%. The patient spent 5.8% (2.5 min) of sleep time with an oxygen
saturation below 90% and 3.6% (1.5 min) of sleep time with an oxygen
saturation at or below 88%. The wake supine end-tidal CO2 (ETCO2) value was
33-40 mmHg. The maximum ETCO2 was 43 mmHg. Cheyne-Stokes/Periodic Breathing
was not present. Supplemental oxygen was not administered.

REM-Time REM AHI NREM-Time NREM AHI Total-Time Total RDI Total AHI
Supine 0.0 m -- 42.5 m 56.5 42.5 m 64.9 56.5
Off-Supine 0.0 m -- 0.0 m -- 0.0 m -- --
Total 0.0 m -- 42.5 m 56.5 42.5 m 64.9 56.5

POSITIVE AIRWAY PRESSURE THERAPY:
During the second part of the study, CPAP titration was initiated at 01:18:55
and ended at 06:16:35. The patient did have difficulty falling back asleep.
None of the tested PAP settings normalized the apnea-hypopnea index (AHI).
There were 122 respiratory events consisting of 24 apneas [13 obstructive
(54.2%), 2 mixed (8.3%), and 9 central (37.5%)], 42 hypopneas and 56 RERAs.
The mean oxygen saturation during the study was 95.0%, with a minimum oxygen
saturation of 87.0%. The patient spent 0.6% (1.3 min) of sleep time with an
oxygen saturation below 90% and 0.3% (0.6 min) of sleep time with an oxygen
saturation at or below 88%. Cheyne-Stokes/Periodic Breathing was not present.
Supplemental oxygen was not administered. A medium Fisher and Paykel Simplus
full face mask without chin strap was used. The mask leak at the most
effective pressure was within normal limits.

PAP SUMMARY:

By Pressure:

PAP BUR O2 TST %Sup SupAHI REM RAHI CAI AHI ArIdx Nadir AvgSaO2
05 0 0 15.0m 100% 24.0 0.0m -- 0.0 24.0 44.0 92% 96%
06 0 0 25.0m 100% 24.0 0.0m -- 4.8 24.0 60.0 89% 95%
07 0 0 12.5m 100% 9.6 0.0m -- 4.8 9.6 67.2 92% 95%
08 0 0 26.0m 100% 13.8 0.0m -- 2.3 13.8 18.5 87% 95%
09 0 0 22.5m 100% 24.0 0.0m -- 0.0 24.0 26.7 89% 95%
11 0 0 34.5m 100% 24.3 0.0m -- 3.5 24.3 26.1 92% 96%
13 0 0 20.0m 100% 21.0 0.0m -- 6.0 21.0 27.0 92% 96%
15 0 0 28.0m 100% 15.0 0.0m -- 0.0 15.0 42.9 92% 96%
17 0 0 20.0m 100% 15.0 0.0m -- 3.0 15.0 54.0 94% 96%


PAP BUR O2 TST %Sup SupRDI REM RRDI HI RDI ArIdx Nadir AvgSaO2
05 0 0 15.0m 100% 40.0 0.0m -- 20.0 40.0 44.0 92% 96%
06 0 0 25.0m 100% 52.8 0.0m -- 12.0 52.8 60.0 89% 95%
07 0 0 12.5m 100% 33.6 0.0m -- 4.8 33.6 67.2 92% 95%
08 0 0 26.0m 100% 16.2 0.0m -- 4.6 16.2 18.5 87% 95%
09 0 0 22.5m 100% 26.7 0.0m -- 16.0 26.7 26.7 89% 95%
11 0 0 34.5m 100% 29.6 0.0m -- 17.4 29.6 26.1 92% 96%
13 0 0 20.0m 100% 30.0 0.0m -- 6.0 30.0 27.0 92% 96%
15 0 0 28.0m 100% 42.9 0.0m -- 15.0 42.9 42.9 92% 96%
17 0 0 20.0m 100% 57.0 0.0m -- 12.0 57.0 54.0 94% 96%


MOVEMENT DATA:
There was excessive movement during wakefulness in the form of periodic and
aperiodic limb movements. There were 48 periodic limb movements during sleep,
resulting in a PLM-index of 11.7. Of these, 3 movements were associated with
arousals, resulting in a PLM-arousal index of 0.7.

ECG DATA:
The average heart rate during sleep was 83 beats per minute, with a range of
76 to 92. During wake, the heart rate ranged from 76 to 112 beats per minute.
No arrhythmias were noted.

OTHER NOTABLE FINDINGS:
Experience to PAP therapy as stated by the patient on the morning after sleep
questionnaire: "I did not benefit from using PAP therapy, PAP therapy was not
easy to use or comfortable, mask was too tight, air leaked from mask,
pressure was too strong"

ICSD DIAGNOSIS:
Obstructive Sleep Apnea Syndrome [G47.33]

IMPRESSION:
1. Severe obstructive sleep apnea. Respiratory events were associated with
oxygen desaturations to a nadir of 86%.
2. Leak was elevated throughout and none of the tested PAP settings (from 5
to 17 cmH2O) normalized the apnea-hypopnea index (AHI).
3. Periodic and aperiodic limb movements were observed during wakefulness,
suggestive of restless legs syndrome (RLS). The patient did not endorse
symptoms suggestive of RLS on the pre-study questionnaire. As RLS remains a
clinical diagnosis, further clinical correlation is advised.
4. Abnormal sleep architecture likely due to respiratory events, PAP
titration, limb movements, medications, and first night effect.

RECOMMENDATIONS:
No effective settings were determined. Consider one of the following options:
1. Auto-CPAP 12 - 20 cmH2O with formal mask fitting; FFM leak was elevated so
consider nasal mask or pillows settings.
2. Return to the lab for Bilevel PAP titration starting at 12 / 7 cmH2O with
formal mask fitting.
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#2
RE: Help for a newbie: titration failed
I'll just comment on the periodic limb movement. docs seem to ignore this. they'll tell you it's negligible but in my experience, plm is as disruptive to sleep as apnea, even when it doesn't rouse or wake me. I am completely unaware of my plm but I've learned to see my respiratory response to it in the cpap flow rate graph you'll see in the oscar reporting program obtainable here for free. pap therapy will not help plm. in fact, pap machines, resmed at least, increase pressure against plm induced flow limitations. this is also very disturbing, causing leaks, arousals and awakenings. I have found plm to significantly interfere with my pap therapy and even after getting my apnea under control, my sleep. although plm still wakes me a couple times a night, rls/plm meds have helped quite a bit. I encourage you to seek treatment for it at the same time you start cpap. I lost way too much time struggling with pap treatment before realizing how much trouble plm was causing me.
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#3
RE: Help for a newbie: titration failed
Have they not heard of BPAP? Most docs and techs will consider BPAP once 15 cmH2O is attempted. Not these jokers though.

Not getting warm fuzzy feeling that this crew of incompetent docs and techs know any part of apnea or PAP treatment. Here's two samples of their stupidity: Item 1. "RECOMMENDATIONS:
No effective settings were determined." But they are to state "You have sleep apnea and you need a CPAP. I'll order it and you can come pick it up in a week or two." Doc is deaf to your comments or complaints. Guaranteed he'll never hear your comments in the future either. This also implies the doc and DME are one and the same, this is always a bad sign. Item 2. "None of the tested PAP settings normalized the apnea-hypopnea index (AHI)." So no setting treated your apnea, but they're going forward to an APAP!?!?

You as the patient need to use your choice of DME supplier to choose the machine brand you need. You're about to be issued an Auto CPAP/APAP that you've already stated negative feedback.

OTHER NOTABLE FINDINGS:
Experience to PAP therapy as stated by the patient on the morning after sleep
questionnaire: "I did not benefit from using PAP therapy, PAP therapy was not
easy to use or comfortable, mask was too tight, air leaked from mask,
pressure was too strong"

The tech doesn't have expertise in mask adjusting apparently by the mask too tight comment. They don't show any likelihood of listening to you at all. FIRE THEM! Go Elsewhere.


"There were 122 respiratory events consisting of 24 apneas [13 obstructive
(54.2%), 2 mixed (8.3%), and 9 central (37.5%)], 42 hypopneas and 56 RERAs." The Mixed and Central apnea will need to be factored in when a machine is chosen. Though it isn't 50/50 OA/CA you are showing CA tendencies. They must consider this info, however they cannot compute 2+2 very well as it appears.

OK here's my suggestion, the report you've copied, make certain this is held onto as you probably need to talk to another doctor, maybe your primary doctor you have now. Show this report and ask for a script for a ResMed AirCurve VAuto.

I will suggest not to accept any APAP they are scripting. They show their incompetence at every turn. Run away from this bunch of incompetent quacks.

To select your DME of YOUR choice, call your insurance customer service, ask for in-network DMEs nearby. With a list of 3-6 DME names, phone numbers, and addresses, call this list. Ask what PAP machine brands they issue. If they state Respironics only in any way, go on to the next. A Respironics machine will be a bad, wrong choice for you. This brand requires pressures to be right on top of your therapy pressures. These are typically less comfortable. Refuse it in my opinion. Do not accept or sign for whatever machine these hacks attempt to push on you. Do not share any bank info or credit or debit card numbers.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#4
RE: Help for a newbie: titration failed
With unsuccessful titration to 17 cm pressure CPAP, they should have had a clue. Do you see you have therapy onset central apnea? This is very hard to read since the forum does not maintain the column alignment we need to really understand the results, especially under the PAP results by pressure. It would really help if you posted that page in PDF format as an attachment, with any personal information blacked out.

If I'm reading this right, your titration resulted in a lot of central apnea and hypopnea events. These are not controlled by CPAP, and if true, you will require ASV (Adaptive Servo Ventilation). Do not accept the "assumed" diagnosis of obstructive sleep apnea. Your doctor is all set to order a CPAP, but you do not have an acceptable titration result. Demand a bilevel and ASV titration. The ASV will resolve your issues. Do not accept the CPAP.

You do not have the typical physiological makeup of severe obstructive sleep apnea, and the results do not support that diagnosis. You need treatment for mixed or central apnea using ASV. This problem is more common than you know, and your doctor's ignorance of it is also very common. Ask about complex and central apnea, and insist that a titration be performed using bilevel and ASV unitl efficacy can be demonstrated.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
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Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#5
Thumbsup 
RE: Help for a newbie: titration failed
Thanks. I think I need to make the apnea my main focus right now since my doctors seem intent on misdiagnosing me, but I will keep an eye on it and mention it to the PCP who eventually replaces the crappy one I'm dealing with now.

Whoops! I think I posted this in the wrong place. Still learning, just like with the apnea stuff.
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#6
RE: Help for a newbie: titration failed
As Sleeprider mentioned, you're going to need the ASV machine not a CPAP. I strongly suggest the ResMed AirCurve 10 ASV; it treats all apnea thrown at it. Whoever you talk with about this, so that you can get your insurance to pay for it, you would need the test done again but you need to demand inclusion of both the BPAP and ASV in this. The test result will prove ASV necessity, but don't let this dopey doc persuade you otherwise.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#7
RE: Help for a newbie: titration failed
OMFG. (I don't know if swearing is allowed here, so I kept it cleaner than I otherwise would. Too-funny )

You people are ANGELS. I can't believe not one but two doctors missed what you guys picked up on right off the bat. (To be fair to myself, I picked up on it too and thought it was weird, but I'd never heard of therapy onset central apnea so I figured it was just something that happens.)

I am so glad I decided to post the whole text of my report here. I thought, "Is this too much information?" but I decided to error on the side of inclusion.

To answer Sleeprider's question, I don't have access to my full PSG report. I posted everything I have in the format it came in, which I copied from MyChart. My doctor has also failed to refer me to a pulmonologist and wasn't going to give me a copy of the prescription she was going to write for the APAP.

I emailed my doctor and asked whether she could add an ASV titration to the biilevel titration I requested in an email this afternoon after reading Dave's reply, or if I'd need to go back for a third study if the bilevel fails. She's not going to know what hit her. Hopefully she starts doing her job once she realizes she is dealing with an educated consumer. I can't believe how mad I am!!! For a minute I thought all this talk about DMEs screwing people over and whatnot had to be exaggerated, but I got hit with the medical-industrial complex BS right from the start.

Friends, I am blowing you kisses and throwing flowers at your feet. You likely saved me months of frustration and poor health. Thank you for your kindness. I will try to pay it forward as best I can.
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#8
RE: Help for a newbie: titration failed
Oh BTW when you're of a mind to tackle it, the sleep study/PSG is yours for the requesting. Remind the doc you'd asked that HIPAA law says they can't deny the request.

Take a look if you want... https://www.hhs.gov/hipaa/for-individual...index.html
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#9
RE: Help for a newbie: titration failed
I did get your data sorted out by importing text to Excel. You had a split study, with the diagnostic baseline in the first part, then CPAP titration in the second. The CPAP pressure progression from 5.0 to 17.0 cm H20 pressure. The baseline AHI was 56.6 and RDI was 65 per hour. You had no REM sleep, and oxygen desaturation was pronounced. No central apnea were noted, and the report does not break out OA and H events. Based on this, the diagnosis of very severe obstructive sleep apnea would be appropriate.

In the CPAP titration, pressure was tried in 1-cm increments from 5.0 to 17.0 from 15 to 34 minutes. AHI ranged from 9.6 to 24.3 with the best result being during a trial of only 9.6 minutes at a pressure of 7.0. There was no consistent relationship of AHI to pressure. Central events were inconsistent from zero to six events per hour distributed throughout the titration range. RDI ranged form 16 to 57 per hour and was lowest near 8 cm pressure. Hypopnea from 4.6 to 20 was present throughout the range and was not correlated to pressure. Although CAI is low, we cannot establish with this test whether hypopnea were central, mixed or obstructive. The titration fails to achieve efficacy at any pressure, and it can appropriately be concluded that CPAP pressure modifies the original Dx of obstructive sleep apnea, to therapy onset complex sleep disordered breathing.

With this titration, it can be said that CPAP therapy is approximately 50% effective as compared to baseline, however efficacy is not achieved at any pressure, and your sleep disordered breathing of all types remains in the moderate to severe range. Since results are non-linear with pressure, no assurance of controlling apnea, hypopnea and RERA can be assured at any pressure prescription. I think the best conclusion would be that titration failed, and you require bilevel or ASV. I do not think a trial of CPAP is appropriate for you in view of the complete absence of efficacy in this titration, however CPAP may be prescribed on a trial basis in order to establish the need for advanced bilevel (this is sometimes required to satisfy insurance approval criteria for advanced therapy). The prudent diagnostic and therapy approach is to schedule and conduct additional testing with advanced bilevel therapy. WARNING! ST bilevel (spontaneous / timed back-up) is not appropriate for central and complex apnea. If you have gotten this far with my long analysis, please read the link below to the Resmed Clinical Titration Protocol. It describes CPAP, VPAP (bilevel), Bilevel ST, and ASV and shows the intended uses of these machines and how to properly titration pressure and select an appropriate therapy. If you read it, you can comfortably fight your case. Focus on the tables in the beginning showing the different technology applications, and then read about ASV on page 28 and understand that ST is for respiratory disease (page 37).

https://www.resmed.com/us/dam/documents/...er_eng.pdf
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#10
Smile 
RE: Help for a newbie: titration failed
Hi, I thought I'd come back and post an update on my progress. 

First, I confirmed that my PCP is, in fact, a quack. When I questioned my diagnosis of OSA, her reply was that the exact type of apnea I have doesn't matter, because all apnea is treated with either CPAP or BiPAP. My understanding is that this is technically true because an ASV is a type of bilevel machine, but I knew she was full of it when she warned me that a BiPAP wouldn't be as comfortable as a CPAP. She finally threw up her hands and told me she'd issue a referral to Sleep Medicine. Which she hasn't yet. I made an appointment anyway with an NP in Neurology for mid-January, which was the soonest available.

I rejected the offer of a CPAP and insisted on trying a bilevel. Dr. Duck said she'd order a titration. When I asked her if she could add an ASV titration during the same study if I fail the bilevel, she said she didn't know. That's when she said she'd refer me to Sleep Medicine. 

Since I have to fail the bilevel to get an ASV, I'm not entirely unhappy I have to do another sleep study. I'd rather shove hot pins under my fingernails, but I understand I have to play the game. 

I guess I have two remaining questions:
1. How likely is it that I'll fail the bilevel titration?
2. Aside from identifying covered DMEs, is there anything else I should be doing while I wait for my study to be scheduled?
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