How concerned should I be about the length of these Centrals?

[Sleeprider]

P10 is a great mask and will also,work with ASV. I'm glad the AHI rate is lower, but agree with your conclusion. Your tidal volume was close to 600 with the higher PS of 6.0, so the reduction of PS to 4.0 has reduced that by 120-150mL. ASV will let you recapture that Vt without the side effect of centrals.

[LookingForward]

It's been a busy last couple of weeks. I wanted to do a quick update then hopefully in the next couple of days address some of the topics brought up by the previous posts. There's so much to learn. I'm incredibly grateful for everyone's knowledge. Although I haven't been posting, I've been trying to learn more.

It took nearly 5 weeks but I finally got the call from my pulmonary/sleep doctor about the sleep study this past Monday. He said that it was a good study and we have firm results as to what an ASV should be set to. He didn't say what those numbers were. He then asked, since I have an Auto BiLevel machine would I rather have him suggest changes to my current machine and try the auto setting first before making this change to the ASV. I told him no. The ASV has a different algorithm than my current machine and no amount of change in settings will make my current machine do what the ASV can do. I didn't tell him that I've already switched to Auto and changed the pressure a bit. I also requested that he put "urgent" on the request so that it didn't take another month to get the new machine. He agreed.

I waited until Thursday to call the DME to see how much progress had been made. So far they didn't sent it to the insurance for approval. They were still try to get all they needed from the doctor's office they said. 

I requested the Resmed AirCurve 10 ASV. The lady wasn't happy that I felt that I had the right to request a machine. She called back yesterday trying to tell me that she specifically ordered the Respironics name brand because the Dreamstation has special setting to keep the Tital Volume high enough for me that the ResMed doesn't have and the doctor specifically said that I need this setting.

Of course I don't have copy of my prescription because my doctor won't give it to me and I was in a situation when the call came that I believed her. But then I also told her about SleepyHead and an online forum that I use and I would find out. About 15 minutes later I got another call saying she was researching the ResMed to find out if they can do some "special" changes in those settings so that the ResMed would work after all.   

In the meantime I started looking up DreamStation ASV and I also read Matt's thread. I was glad to read that he likes the Dreamstation. 

I've also started using the Oximetry Meter at night. My O2 level stays above 92% while using the machine. Mostly averaging around 95-97% I think. I'll post some SleepyHead shots.  The other interesting thing that I've noticed is that when I use the Oximetry Meter during the day sitting up or laying down without the machine, if I'm completely relaxed, reading or almost sleeping the Meter hovers around 93-95% so it's actually lower without the machine until I get up move around. I don't think it was that way before I started using a BiLevel machine. I wasn't continually short of breath during the day before I used a machine. 

I'll post shot's later. Sorry for the delay.

[SarcasticDave94]

FWIW on the script: the doctor legally cannot refuse your request for a copy of YOUR report and script under HIPAA law. This also applies to sleep study and titration results. Demand a copy and if needed mention HIPAA.

FWIW 2 ResMed 10 ASV is a better machine, worth the effort to require it as a patient IMO.

[Sleeprider]

Both machines can maintain tidal volume with minimum pressure support, and it hasn't been a problem with your current VPAP. Her statement has me worried they may be ordering ST. Talk to the doctor, and let him know you want the Resmed ASV because you want the EasyBreathe flow shaping and do not want the Respironics BiFlex. There are other reasons, but direct the request through the doctor so it is properly ordered. Ask for a copy of your prescription and test results as they are required to be provided under HIPAA.

[LookingForward]

I changed the pressure up a little about 3 or 4 days ago because I was feeling more starved for air through the day. The only other changes are going back and forth from using the ResMed AirFit P10 (Medium) to the ResMed AirFit N20 (Small).

Also just sitting all the way up in my recliner this evening, totally relaxed, the Oximetry Meter hovered again between 93-95. I asked my husband to put it on for 5 minutes and his hovered between 98-99. So I'm reasonable sure the Oximeter Meter is correct. 

[attachment=9265]

[attachment=9266]

[attachment=9267]

[Apnea Infant]

It's been a busy last couple of weeks. I wanted to do a quick update then hopefully in the next couple of days address some of the topics brought up by the previous posts. There's so much to learn. I'm incredibly grateful for everyone's knowledge. Although I haven't been posting, I've been trying to learn more.

It took nearly 5 weeks but I finally got the call from my pulmonary/sleep doctor about the sleep study this past Monday. He said that it was a good study and we have firm results as to what an ASV should be set to. He didn't say what those numbers were. He then asked, since I have an Auto BiLevel machine would I rather have him suggest changes to my current machine and try the auto setting first before making this change to the ASV. I told him no. The ASV has a different algorithm than my current machine and no amount of change in settings will make my current machine do what the ASV can do. I didn't tell him that I've already switched to Auto and changed the pressure a bit. I also requested that he put "urgent" on the request so that it didn't take another month to get the new machine. He agreed.

I waited until Thursday to call the DME to see how much progress had been made. So far they didn't sent it to the insurance for approval. They were still try to get all they needed from the doctor's office they said. 

I requested the Resmed AirCurve 10 ASV. The lady wasn't happy that I felt that I had the right to request a machine. She called back yesterday trying to tell me that she specifically ordered the Respironics name brand because the Dreamstation has special setting to keep the Tital Volume high enough for me that the ResMed doesn't have and the doctor specifically said that I need this setting.

Of course I don't have copy of my prescription because my doctor won't give it to me and I was in a situation when the call came that I believed her. But then I also told her about SleepyHead and an online forum that I use and I would find out. About 15 minutes later I got another call saying she was researching the ResMed to find out if they can do some "special" changes in those settings so that the ResMed would work after all.   

In the meantime I started looking up DreamStation ASV and I also read Matt's thread. I was glad to read that he likes the Dreamstation. 

I've also started using the Oximetry Meter at night. My O2 level stays above 92% while using the machine. Mostly averaging around 95-97% I think. I'll post some SleepyHead shots.  The other interesting thing that I've noticed is that when I use the Oximetry Meter during the day sitting up or laying down without the machine, if I'm completely relaxed, reading or almost sleeping the Meter hovers around 93-95% so it's actually lower without the machine until I get up move around. I don't think it was that way before I started using a BiLevel machine. I wasn't continually short of breath during the day before I used a machine. 

I'll post shot's later. Sorry for the delay.

Hello Lookingforward

I am just writing to say that I have 'enjoyed' reading your posts. I do not understand the total and specific detail requirements for and the treatment of complex apnea but I salute you for your tenacity and commitment to discovering and learning about your condition. Your posts and logs of your journey are really illuminating but the most striking thing is your commitment in the face of the obstacles that your medical profession are posing. Your statement of how you are dealing with this in a measured way is a help to all of us facing this juggernaut. 

You've had and are still having incredible learned and generous support here in the forum as have all of us in one way or another. I only want to say, keep on 'fighting' for the best you can get from the medical team and I also 'look forward' to reading of your continued success especially in the getting the best machine.

All love and the very best.........

[LookingForward]

Apnea Infant, 

Thanks so much for your post and the encouragement it brings me. It's very timely as I sit here still trying to learn more. I want to be ready when the call comes from LinCare later this week hopefully.

[LookingForward]

Both machines can maintain tidal volume with minimum pressure support, and it hasn't been a problem with your current VPAP.  Her statement has me worried they may be ordering ST.  Talk to the doctor, and let him know you want the Resmed ASV because you want the EasyBreathe flow shaping and do not want the Respironics BiFlex.  There are other reasons, but direct the request through the doctor so it is properly ordered.  Ask for a copy of your prescription and test results as they are required to be provided under HIPAA.

Dave and SleepRider, thank you for the replies. I realize that my doctor should be providing me a copy of the prescription and test results, but he doesn't do it until I push him while sitting in his office. I'm probably going to ask LinCare for a copy of the prescription when I go to pick up the new machine. I'll need to wait until my next pulmonary appointment to get a copy of the sleep study results. Hopefully he will also give a copy of the pulmonary function testing. There were issues when I went to the Cleveland Clinic two years ago but all I had to do was ask about a copy of my test results and they always released it to MyChart so that I can see it or print it anytime I want. After I finally get the right machine, I may go back there to the pulmonary doctor.

[LookingForward]

Do anyone know if the lady from LinCare was lying to me? Is there a special setting for Tidal Volume that is only available on the Respironics ASV? I haven't found anything about the unique settings on a PR ASV machine that ResMead doesn't also have. I'm also going to look up how to get into the Clinical settings on a PR ASV so that if that's the machine they ordered, I want to check for myself what she was talking about before I ever walk out the door with the machine. But if that is true, can the ResMed do the same thing?

Last night my Tidal Volume did go down. I don't know why. Also used the Oximetry Meter and must have bumped it out of place. The results on that part didn't come out right either.

The shortness of breath isn't consistent either. Today I haven't had it all day. I didn't know if anyone can tell why from the screen shot.


[attachment=9276]

[LookingForward]

Maybe you just need ventilatory support via a bi-level machine with a backup rate. In that case, a machine with the S/T mode would be preferable to the ASV, in the setting of a muscular dystrophy. S/T mode will augment ventilation and increase muscle rest. ASV constantly targets 90% of your own recent minute ventilation; so if your ventilation is inadequate on its' own, the machine will constantly underventilate you because it keeps resetting the natural baseline.



Pulmonary Function Testing is not necessarily helpful in the setting of muscle weakness, as the tests are mostly designed for lung/airway diseases (to find restrictive or obstructive defects). What is most important is measuring your forced vital capacity while sitting up and lying down.

Your CO2 levels also may be normal during the day, but it's possible that you're hypoventilating at night when you sleep, and then your body is blowing the excess CO2 off all day. It's really hard to say though, because your tidal volumes look pretty normal assuming you're of average height. But you could have an inappropriately low breathing rate that does not allow for adequate ventilation.

What we don't know is the exact reason you stop breathing at times during the night. If you were able to borrow a S/T machine with a backup rate somehow, you could easily test by enabling s/t mode and checking the spontaneous trigger % value results for a night of sleep, with an artificially set very low backup rate, to let you spontaneously trigger as much as possible. If the % is low, it's definitely possible muscle weakness is the reason.

Matt, 

Two years ago I was diagnosed with Sleep Apnea through the Cleveland Clinic. I was put on an ST machine then. The only thing I remember about the settings is that it was set to 11/5. I don't remember what the Back Up rate number was. I mostly remember being extremely short of breath every time I went off the machine. It would last for 1-3 days. No matter how much I tried to get up on my feet and function, breathing was really hard. 

My doctor was solely focused on switching me to a BiLevel S or BiLevel Auto at the time and wouldn't change any of the settings of the ST to try and help me make it work. I quickly got to the place that if I didn't stop using the machine that I was rapidly loosing muscle strength because of the O2 and CO2 balance being off. I ended up taking the machine back. I tried to get used to it but didn't know how to make it work without help. I also didn't have SleepyHead then. If I remember correctly, SleepyHead didn't work with ResMed AirCurve 10 ST yet. I also remember continually waking up because the machine didn't give me enough time to exhale before it would force the next breath. I remember getting frustrated because I couldn't fully get all the CO2 out while using it.


As far as Pulmonary Function testing, my current doctor did do a specific sleep study just check the CO2 level back in May 2018. At that time it was normal. I wasn't short of breath during the day then though. Two years ago at the Cleveland Clinic they did, at my request, do pulmonary function testing in the sitting and supine position. Because of the muscle weakness around the muscles of my mouth, I wasn't able to keep the seal to the end of the breath. When the results came back it was noted that the MEPS testing showed a marked decrease since the previous function testing but since I couldn't maintain the seal on that part I don't know if what they got as far as results was accurate. it did say on the final results of the MEPS that the testing showed diaphragm weakness.

Unfortunately I don't have access to another ST machine to try it again. My current doctor thinks that I failed on the ST because the backup rate was causing the shortness of breath. If that is correct, it makes me concerned to switch to the ASV and go back to another machine with it. Hopefully all of you that are knowledgeable with the settings can help me not to fail this time. I'm concerned. I don't what to fail on another machine with a backup rate.