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+--- Thread: New and confused (/Thread-New-and-confused--40832)
New and confused - Retvet72 - 07-18-2023
So I’ve been on Cpap for 25 years and everything seems to be going fine. My numbers are great except I have some nighttime low O2 events. Fast forward the pulmonologists did some PFT testing and said I had diaphragm weakness and got a Philips Trilogy Evo approved. Problem is he has it set at 500-550 Tidal volume which is what I’m averaging on my SleepStyle. I declined the machine yesterday as it is absolutely huge and is scary as hell looking. This also doesn’t seem like the correct machine for me. I’m so confused and scared. I think I got this “diaphragm weakness” from Cpap in the first place. Im not trying to be on a vent as I’m only 50 and I travel and this thing is a beast. Any advice? Thanks.
RE: New and confused - Sleeprider - 07-18-2023
I think a less intimidating machine in the same category is the Resmed Aircurve 10 ST-A which can provide many different flavors of bilevel therapy including iVAPS (inellegent volume assured pressure support) which targets alveolar tidal volume. The real question is whether your diaphragm weakness is actually resulting in hypoventilation, or if you can spontaneously maintain appropriate ventilation with simple bilevel pressure support from a device without all the backup rate and ventilator options. It sounds like you should be able to experience normal respiration with something as simple as a Resmed Aircurve 10 Vauto which will supplement your spontaneous effort with pressure support. A CPAP should not have caused diaphragm weakness as it simply provides a constant air pressure to stent the airway and is not a "respiratory assist" device like a bilevel. You have options, and I would normally expect your doctor to use progressive therapies to evaluate your needs before putting you on a full-on ventilator. It's like going from aspirin to life support in one step. Have you had any titration studies to evaluate something like spontaneous bilevel such as the Vauto? A major escalation above that would be the ST-A, before you arrive at a full hospital grade ventilator.
RE: New and confused - Retvet72 - 07-18-2023
Thank you so much for the response!! I spoke with my pulmonologist after I read your post and he told me, “ I need breathe by breathe help” He explained it like a garage door. You can open it without an opener, but I need the automatic opener. I asked how that was going to help my O2 and he said it might not and we can always go backwards. Huh? I’m like I don’t know about this plan. He now is changing it to a Resmed Astral. I’m thinking of changing providers and driving the 2 hours to get another opinion. I’m seriously confused about all these “other” devices. He thinks I am not taking deep enough breathe and I need the help. This seems extreme.
RE: New and confused - Sleeprider - 07-18-2023
Your doctor is asking you to take a huge leap forward to a full ventilator, when a smaller jump to bilevel with spontaneous breathing, or bilevel with backup rate might work. To be honest, the Trilogy is used by a few members here, but is well beyond our scope to help you as it is basically a life-sustaining ventilator rather than a positive air pressure device. If you can post more specific pulmonary test results or CPAP data that might help, but you are talking about such a large leap in therapy from CPAP to ventilator, that I just have a lot of reservations in passing judgement on what you're being told, other than to say, most patients that are not in an emergency respiratory arrest or severe hypoxia would not be moved that far, so fast. there are abundant alternative solutions including supplemental oxygen bleeds. I have not seen the pulmonary tests or data that your doctor must be relying on to make such a drastic recommendation.