RE: Hypopneas correlated with flow reduction?
I realize the ROI on your therapy is a difficult calculation, but I'm all-in to help you make the most of it, as long as that is what your want. I know you have already been fighting a long battle that no one has won. Please know my prayers and hope for your comfort are with you.
RE: Hypopneas correlated with flow reduction?
Thanks. I appreciate your help and concern. The mask issue - how to make it seal without hurting - is mostly understood, but it's going to require messing with the headgear or wearing a skullcap of some kind. One of the straps chafes the top of my R ear at the helix-to-head joint if I lower the mask to the proper position, but if I raise it (via a minuscule tightening of the around-the-head strap), then the mask hurts the Columella (I had to look that up). I'm going to try the F20s next. But in spite of all that, I'm finally able to get a decent night's sleep and meaningful data. I'm pretty sure the raft of OAs I saw a couple nights ago was due to sleeping on my back with the collar and an uncomfortable neck position due to pillow mismanagement.
I have a telemed conference with the neuropulmonology team on Tuesday; I'll let you know what they have to say.
06-02-2020, 08:00 AM
(This post was last modified: 06-02-2020, 08:27 AM by PhoebeAnn.)
RE: Hypopneas correlated with flow reduction?
I think I fixed the mask issues. Wrapped a soft cotton Q-Tip pad around the edge of the strap that was chafing my ear, reset the position of the mask, and Viola! Slept pretty well all night, although the respiration rate is crazy. I'll bring that up with my neuropulmonologist today, I think.
RE: Hypopneas correlated with flow reduction?
Your respiration rate and fluctuating minute vent is pretty disturbing. Again the ST-A is the better solution. It seems your medical team is less focused on AHI and median measures than many sleep doctors, and seem more open to better solutions. Your current ST is a dumb machine that produces the same pressure support all the time, and your respiration rate and volume revolve around the machine. The ST-A is adaptive an would let you maintain a much more steady respiration rate and volume, while the mach ine makes changes to facilitate that. It is a tool that will keep you away from the need for more invasive ventilation options for a longer period of time. Considering your condition, it is the right tool, and more comfort and a better quality of life is a lot different from the long-term low ROI your cite.
RE: Hypopneas correlated with flow reduction?
Without question I'll backup SR on this. I was going to Comment on too much PS too often but the STA will be a better solution. 6
RE: Hypopneas correlated with flow reduction?
I sent a copy of the Resmed Titration Guide that explains the ST-A application, therapy and use for idividuals like yourself with nervous system impairment but healthy lungs. Although the Guide talks about spinal cord injury, ALS has much the same impacts. Using the manufacturer information rather than citing some wanna-be experts on an internet forum, will help you to make a better case for getting this machine. The relevant information starts on page 38, and will allow you to compare the ST-A to the ST-D (D is for dumb, A is for Adaptive). Good luck.
RE: Hypopneas correlated with flow reduction?
Thanks, guys. I'll let you know what the neuropulmonologist says.
RE: Hypopneas correlated with flow reduction?
(06-02-2020, 01:30 PM)PhoebeAnn Wrote: Thanks, guys. I'll let you know what the neuropulmonologist says.
Neuropulmonologist said to get a Philips Trilogy 100; arrives tomorrow to replace the ResMed Aircurve 10 ST. Also a portable version that will hang on the back of my wheelchair and let me grab a mouthpiece now and then to get some air rammed in. Great - a new machine to learn about, that OSCAR apparently doesn't support.
RE: Hypopneas correlated with flow reduction?
The Trilogy is a very sophisticated NIV, unfortunately we can's see the data. This is an AVAPS machine like the ST-A but there is no SD card or OSCAR support. Your doctor can get the daa and make appropriate changes. The principle is the same. It uses adaptive pressure suport to maintain a minute vent volume. This is a far better solution than the ST, but it's still disappointing we won't be able to folllow along. If there is a SD card slot, we will work with you to submit the data and try to create support in OSCAR.
You still could request the Resmed Aircurve 10 ST-A as your preference. It is the same therapy.
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RE: Hypopneas correlated with flow reduction?
That's what I inferred from what I've read. The good news is that it's a timely change, since it's nearing impossible for me to handle the SD card as my hands' strength and dexterity fail. The other good news is that I've moved from the F30 to the F20 Air Cushion. Using the Medium instead of the Large, it fits better, doesn't leak, doesn't hurt, and seems to stay put as I move. The fit around the nose does seem to constrict airflow through the nose, but I'm a natural mouth breather anyway.
But there's no more good news. I look upon my docs' change to the ventilator as ominous, and don't expect to be using it for very long.
I've enjoyed the ApneaBoard experience immensely. Thank you all for your support, and I wish you well.
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