CSA0890,
Considering your young age and your MG I will refrain from making any suggestions as to the machine you should consider other than to say that generally machines with more features can be operated in modes to mimic those of the simpler machines but a vanilla cpap can be nothing more than a cpap.
As far as renting or buying... this I will comment on. Seems the only reason for you to rent would be if you wanted to try "cpap" to see if you can tolerate it... but considering you can buy a basic cpap from cpap.com for what it would cost to rent one from the local DME for a few months you might as well buy one, IMO.
I admire your "full steam ahead" approach to taking charge of your healthcare... it's likely a sign of your youth. Please consider the comments offered by some of us "Old Timers" LOL! but keep you youthful enthusiasm... you'll need it to deal will the challenges you are facing.
DME or online
-
wading thru the muck!
- Posts: 2799
- Joined: Tue Oct 19, 2004 11:42 am
Good luck - and, again, keep us posted.
O.
O.
_________________
| Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
| Additional Comments: Machine: Resmed AirSense10 for Her with Climateline heated hose ; alternating masks. |
-
StillAnotherGuest
- Posts: 1005
- Joined: Sun Sep 24, 2006 6:43 pm
So close!!!
Oh man, how did Texas pull that game out yesterday? With a Longhorn loss, it wouldn't take too many other things to happen before we'd be back on top again (errr, I'm talking Norman here, not Stillwater). Oh well, we are just downright snake-bit this year, after all that's happened, I'm surprised that we're even where we are. Credit Bobby.
I think you have a good plan for now, with the eventual transition to BiPAP. I saw in your other post where you mentioned that the central apnea index is 1, so that leaves an obstructive AHI of 7.0 to work on. Reviewing the sleep studies can give a good idea on what to expect. Clearing up the respiratory events and desaturations (assuming there were some) will be helpful, but seeing overall improvement in sleep architecture will be equally important.
And while MG can have a wide range of respiratory involvement, you have a couple clues there ("most of the time my breathing is not too bad", oxygen concentrator sitting in the house) that suggest nocturnal use of intermittent positive pressure ventilation (NIPPV) may prove helpful. Easy enough to check tho, you probably had a bunch of blood gases drawn, just see what the CO2 is while you're stable. I would think you're also getting periodic screening spirometry as well. General guidelines for using NIPPV include:
Data out there supporting NIPPV in neuromuscular disease are numerous:
NIPPV and MG
These guys don't buy the respiratory fatigue theory, but half of these patients are MG. Large central component for SBD.
NIPPV and Neuromuscular Disease
Great review of this application including management algorithms. Interestingly, their MG patient improved with medication (which obviously we would all hope that that would be the case with you).
If you do go ahead and switch to BiPAP later on, make sure you check back and report any differences that you notice.
And somebody just poked me in the ribs to say that getting the "S/T" version of the BiPAP might be a good idea so that you have that function if you need it. You could very well qualify with insurance under the billing code E0471 Restrictive Neuromuscular Disease:
Helpful Hints - Respiratory Assist Device with Back-Up Rate
Again, there's the clinical criteria for qualifying (hey, I don't just make this stuff up, y'know).
Go Sooners.
SAG
I think you have a good plan for now, with the eventual transition to BiPAP. I saw in your other post where you mentioned that the central apnea index is 1, so that leaves an obstructive AHI of 7.0 to work on. Reviewing the sleep studies can give a good idea on what to expect. Clearing up the respiratory events and desaturations (assuming there were some) will be helpful, but seeing overall improvement in sleep architecture will be equally important.
And while MG can have a wide range of respiratory involvement, you have a couple clues there ("most of the time my breathing is not too bad", oxygen concentrator sitting in the house) that suggest nocturnal use of intermittent positive pressure ventilation (NIPPV) may prove helpful. Easy enough to check tho, you probably had a bunch of blood gases drawn, just see what the CO2 is while you're stable. I would think you're also getting periodic screening spirometry as well. General guidelines for using NIPPV include:
- Forced vital capacity < 50% predicted
Nocturnal desaturation ≤ 88% for ≥ 5 consecutive minutes during sleep
Maximum negative inspiratory pressure < -60 cm H2O
pCO2 (arterial) ≥ 45 mm Hg while awake breathing patient’s usual fraction of inspired O2
Data out there supporting NIPPV in neuromuscular disease are numerous:
NIPPV and MG
These guys don't buy the respiratory fatigue theory, but half of these patients are MG. Large central component for SBD.
NIPPV and Neuromuscular Disease
Great review of this application including management algorithms. Interestingly, their MG patient improved with medication (which obviously we would all hope that that would be the case with you).
If you do go ahead and switch to BiPAP later on, make sure you check back and report any differences that you notice.
And somebody just poked me in the ribs to say that getting the "S/T" version of the BiPAP might be a good idea so that you have that function if you need it. You could very well qualify with insurance under the billing code E0471 Restrictive Neuromuscular Disease:
Helpful Hints - Respiratory Assist Device with Back-Up Rate
Again, there's the clinical criteria for qualifying (hey, I don't just make this stuff up, y'know).
Go Sooners.
SAG
Aromatherapy may help CPAP compliance. Lavender, Mandarin, Chamomile, and Sweet Marjoram aid in relaxation and sleep. Nature's Gift has these and a blend of all four called SleepEase.
If this is your first experience in the world of PAP's, and you have the specific problems you describe, you should be working with your doctors and DMEs. Nothing wrong with educating yourself on web forums. However, none of the people here, no matter how well intentioned, can provide the specific guidance and monitoring you might need. Half the battle is finding support people you trust. If you aren't getting the help you need, keep shopping. Ignoring your doctors based on what you read here could be very foolish.
That said, some professionals have hidden agendas that an educated consumer can spot. My sleep doctor tried to take the efficient route (for him) of fitting me into Respironics products that he was familiar with. Once we started discussing other options that I had learned about on the web, he opened his prospective. Another problem I encountered was that my insurance paid one fixed price to DMEs for a PAP, any PAP. Unfortunately, that negotiated price was a wholesale price for a standard CPAP and was less than the DME's cost for an APAP. The DME was to not allowed to bill the customer for the difference. Once I understood his problem, we worked together with the doctor and insurance company to resolve the issue. Figuring out the rules of this game is a challenge. Don't forget, web sites also have hidden agendas. They are not the solution to all problems that some posters make them out to be.
That said, some professionals have hidden agendas that an educated consumer can spot. My sleep doctor tried to take the efficient route (for him) of fitting me into Respironics products that he was familiar with. Once we started discussing other options that I had learned about on the web, he opened his prospective. Another problem I encountered was that my insurance paid one fixed price to DMEs for a PAP, any PAP. Unfortunately, that negotiated price was a wholesale price for a standard CPAP and was less than the DME's cost for an APAP. The DME was to not allowed to bill the customer for the difference. Once I understood his problem, we worked together with the doctor and insurance company to resolve the issue. Figuring out the rules of this game is a challenge. Don't forget, web sites also have hidden agendas. They are not the solution to all problems that some posters make them out to be.