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Starting AutoPAP
#1
Starting AutoPAP
I have sleep apnea and ankylosing spondylitis with reduced chest expansion.  When I did the home sleep study, I had to move the chest band down onto my stomach because I wasn't expanding my chest enough to trigger the "I'm still breathing" sensor. 

Anyway, most of the time the apnea is not too bad--sats get down to 92% at night, but every once in a while I'll have a really bad episode with sats down to 74% and respiratory rates down to 4/min (when I get up and go into the bathroom just after one of these, my face will be very white).

The problem is that I have trouble breathing when lying down, and can't stand having a ceiling fan or other fan blowing at me because I feel like it's preventing me from exhaling...and I also have bad nasal allergies (steroid sprays cause sinus infections, so I can't use them) and claustrophobia.  I generally sleep on my side;  lying on my back is pretty much impossible.

Any hints on how to cope with sleep apnea treatment?
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#2
RE: Starting AutoPAP
You need to talk to a Doctor. It sounds like you need a Bpap with backup that will assist you with breathing. You really need an in Lab study and not a home study.
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#3
RE: Starting AutoPAP
The bilevel ST machines were made for people like you. These devices can be setup with low exhale pressures and higher inhale pressures to make respiratory effort easier and to increase your ventilation rate. They can be setup with enough pressure support to actually perform all of the work of respiration if needed. In addition, it has a backup rate to ensure that you take a breath on a timed basis, even when you do not spontaneously make the effort to breathe.

Your condition qualifies you for coverage for BiPAP ST or VPAP ST, but you need to talk to your doctor about a prescription. Please talk to your doctor. You should not be lumped in with a cohort that suffers from conventional obstructive sleep apnea; you have a specific need for a respiratory ventilator. Here are links to the types of machines you should be evaluated for:
https://www.resmed.com/us/en/commercial-...ivaps.html
https://www.usa.philips.com/healthcare/p...ventilator
Sleeprider
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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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#4
RE: Starting AutoPAP
We need to know what machine you are using and all of the settings.
Sleepyhead software is free and shows us everything we need to provide the best guidance.
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#5
RE: Starting AutoPAP
ThanksThanks for the BiPAP recommendation Sleeprider and Walla Walla

Time to go talk to pulmonary/sleep again, I guess.

I tried the APAP for about 5 minutes in the DME office today---no more than about 2-3 breaths at a time---and indeed had the problems I thought I'd have.  I ended up feeling kind of light headed and had to have a hit of albuterol afterwards to return to normal (not immediately, but once I got to the building exit).  The tech said she'd let the pulmonary doctor know, and told me I should also get in touch with them...
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#6
RE: Starting AutoPAP
You should ensure that you have maximized pressure relief (EPR, FLEX, PS, …) on your current machine before concluding that you need a machine that delivers more. If your setting is off or low, turn it up.
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#7
RE: Starting AutoPAP
Ted, given this individual's condition and their complaint about the therapy trial, pressure support should be serious and appropriate consideration in therapy. Read the post. He had to move the chest expansion strap because his chest does not move enough to indicate respiratory effort. There is a co-morbidity of "ankylosing spondylitis with reduced chest expansion".

I don't pretend to be able to prescribe treatment to this individual, but the non invasive ventilators are specifically targeted to treat these kinds of condition. There is is nothing in this person's post that suggests a problem with obstructive sleep apnea but with congenital chest weakness or partial paralysis. No CPAP can hope to produce the pressure support and backup rate that is likely indicated here. I'm happy to let his doctor make the decision, but this member has not been issued a CPAP yet. It sure seems like a good idea to me that he investigate the most appropriate therapy. I hope we can help, by pointing out alternatives to CPAP that was not tolerated, but again this kind of condiiton is well beyond my expertise. Let's hope the doctors get it right.
Sleeprider
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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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#8
RE: Starting AutoPAP
(07-17-2018, 07:14 PM)Sleeprider Wrote: He had to move the chest expansion strap because his chest does not move enough to indicate respiratory effort. There is a co-morbidity of "ankylosing spondylitis with reduced chest expansion".  
 
Thanks for replying, and for noticing that detail.  I've been leaving breadcrumbs like that all over the place for the doctors to pick up on and make things right;  maybe failing on the APAP machine will provide another such breadcrumb. 

Chest expansion as measured by my rheumatologist varies between 0 cm and 2 cm, with ~1 cm being most common.

The home sleep study did find a sufficient number of apnea episodes to warrant some sort of xPAP machine. 

My PFTs have been good, because the PFT is a short test that I can hold things together for, and the % normals have to be fairly low before they become reportably abnormal (the respiratory tech told me the only problem she saw was some slight early fatigue on the hyperventilation portion, but even that didn't rise to a reportable level).

My calculated PaCO2 from routine blood work has started to creep upward in recent months, and is now at the extreme upper limit for normal.

I was carrying a pulse oximeter with me everywhere for a while after a really bad bout of bronchitis in December/January, and O2 sats (on room air) are 96% while awake sitting or walking around, 92% when lying down, and 92% when sitting on an airplane (cabin altitude 7500 feet).  Haven't tried the "sleeping" and "on an airplane" combination yet. 

As I understand it, the goal is to stay above 88%.

Will reply again in ~2 weeks after my next appointment with sleep specialist.
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#9
RE: Starting AutoPAP
(07-17-2018, 07:14 PM)Sleeprider Wrote: Ted, given this individual's condition and their complaint about the therapy trial, pressure support should be serious and appropriate consideration in therapy.  Read the post. He had to move the chest expansion strap because his chest does not move enough to indicate respiratory effort. There is a co-morbidity of "ankylosing spondylitis with reduced chest expansion".  

I don't pretend to be able to prescribe treatment to this individual, but the non invasive ventilators are specifically targeted to treat these kinds of condition. There is is nothing in this person's post that suggests a problem with obstructive sleep apnea but with congenital chest weakness or partial paralysis. No CPAP can hope to produce the pressure support and backup rate that is likely indicated here.  I'm happy to let his doctor make the decision, but this member has not been issued a CPAP yet.  It sure seems like a good idea to me that he investigate the most appropriate therapy.  I hope we can help, by pointing out alternatives to CPAP that was not tolerated, but again this kind of condiiton is well beyond my expertise.  Let's hope the doctors get it right.

I thought he was struggling with treatment assigned by his doctor (APAP).
I hope he gets a lab titration.
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#10
RE: Starting AutoPAP
Spondy, please stop dropping breadcrumbs and hoping they will be noticed by something other than squirrels.  You actually need to hit the doctors over the head with this as they are busy people and will appreciate your input once they realize the problem.  My recommendation is that you pointedly ask your rheumatologist to consult with the doctor in charge of your sleep therapy to inform him of your condition.  Your should tell your rheumatologist that you think you need BiPAP or Bilevel to assist with the work of breathing while you are asleep. You can tell him about your experience on CPAP.  This consult should fast-track you to the correct therapy.  Do not be subtle, you must explain to the doctors that you have a unique health condition they must consider in making sleep therapy decisions. Getting the doctors together to discuss it will make everyone feel like they made a breakthrough and you won't even have to mention you learned about it on a forum.

I think the ideal solution for you is bilevel with a backup rate, meaning the machine provides separate inhale (higher) and exhale pressure (lower) and will provide a timed inspiration pressure if you do not take a breath near your normal breathing rate. These machines do the following:

Provide improved breathing comfort by reducing respiratory effort
Provide increased respiratory volume
Ensure the respiratory rate is maintained
Can target pulmonary aveolar volumes to ensure tidal volume targets are assured (iVAPS)

Medicare and most insurance use HCPCS codes to indicate the equipment needed.  These are discussed in the Dealing With Insurance and Medicare Wiki on Apnea Board: http://www.apneaboard.com/wiki/index.php...6_Medicare  The two types of machines your doctors should be considering are:
E0470 Respiratory assist device, bi-level pressure (BiPAP) capability, WITHOUT backup rate feature, used with noninvasive interface, e.g., nasal or facial mask (intermittent assist device with continuous positive airway pressure device)
E0471 Respiratory assist device, bi-level pressure (BiPAP) capability, WITH backup rate feature, used with noninvasive interface, e.g., nasal or facial mask (intermittent assist device with continuous positive airway pressure device)

Here is exactly what the requirements are for documentation in a patient to be qualified for an E0471 device (Please copy this for your doctor):

Medical Record Documentation
  • Medical records include documentation of a face-to-face encounter between the beneficiary and the ordering practitioner that occurred within 6 months prior to completion of the 5EO.
  • The medical record fully documents symptoms characteristic of sleep-associated hypoventilation (daytime hypersomnolence, excessive fatigue, morning headache, cognitive dysfunction, dyspnea, etc.)
  • Medical records support that the beneficiary has one of the following clinical disorders and meets all coverage criteria for that clinical disorder.
Restrictive Thoracic Disorder
  • The beneficiary’s medical record documents a neuromuscular disease (for example, ALS) or a severe thoracic cage abnormality (for example, post-thoracoplasty for TB); and The medical record documents ONE of the following:
  • An arterial blood gas PaC02, done while the beneficiary is awake and breathing the prescribed FI02, is greater than or equal to 45 mm Hg; or
  • Sleep oximetry demonstrates oxygen saturation less than or equal to 88% for greater than or equal to 5 minutes of nocturnal recording time (minimum recording time of 2 hours), done while breathing the beneficiary’s prescribed recommended FIO2; or For neuromuscular disease only, 
(source: https://www.cgsmedicare.com/pdf/dme_chec...2018re.pdf )
You clearly qualify under these criteria.  Stop beating around the bush and print out some of this information and direct it to both of your doctors
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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