11-20-2023, 09:44 PM
(This post was last modified: 11-20-2023, 09:46 PM by Midge777.
Edit Reason: wasn't sure of name of sleep software
)
Aircurve ASV desperation
I've been using the Resmed Aircurve ASV for about 7.5 years, mostly successfully (as in AHI 60 dropped down to normally less than 1). Before I started treatment I had really severe symptoms: intense crushing chest pain during the night, severe headaches, high and labile bp, tachycardia, arrhythmia, etc. The three times I've had a machine fail, it has always been accompanied by a return of these symptoms, even if I'm not aware at first that the failing machine is causing the symptoms.
HOWEVER, my machine has NOT notified my sleep medicine provider that it's failing. It has continued to report low AHI. Last time, after my machine was replaced, I sent the old failed one (that was still reporting normally) to a resmed authorized repair place and they told me that five different things were broken. The ones I remember were the blower, the motherboard, the seals, etc. I asked why it was reporting as normal. They said that when the motherboard fails, it will report incorrectly.
I have four different questions:
1) When the machine gets loud and starts to sound like it's breathing back at me after I take a breath, in my experience that's usually right before or as it's failing. Has anyone else experienced this? Do you know why it does this?
2) Are the med equipment providers known to turn back the usage hours? My "new" machine that I received last week did not really seem new. The person who gave it to me at the equipment supply co. went into a back room and brought it back 30 seconds later with no box, no packaging, none of the usual plastic that covers the knobs, etc. She claimed it was new (of course) when I questioned it... but this new machine is already making that extra loud breathing sound, so I'm worried the supposedly week-old machine is failing.
3) Are there any strategies to get a machine replaced quickly? I am seriously afraid of having a cardiac event because of how severe my symptoms are. Whenever my machine starts to fail, the symptoms all return. Most recently with the return of these symptoms, I didn't suspect the machine at first, because it was only seven months old; it had been replaced last spring. But I've actually never had these symptoms other than when ASV stops working. (In sleep study my 02 sat went down to low 70s so my cardiologist has no doubt that the non-working ASV is responsible.) At the DME, no one was interested in helping me at all, and I basically had to go crazy on them. I'd love to know what you do to get machines replaced quickly if it's needed.
4) Aside from the noise issue, which makes me think this "new" machine (which I've only had for a week and I suspect might be a refurb) is not going to work for long, I've also slightly increased my settings.. I'm epap 6-8, ps 4- 16.4. My lungs hurt, and I think it's may be because I have to breathe hard to get enough air. Does this make sense? Also, sometimes I notice resistance when I try to breathe in, as if there's a blockage or something, but there's not. it feels almost like having to pull the air in beyond an obstacle. Is this likely from settings being too low or too high? I have changed the mask, the tubing, the water container, etc. But nothing helps.
BTW I paid around $500 to have my last ASV refurbished so that I can use it as a backup. However, it only worked for ONE night, and after that I was out of luck.
I am so discouraged and feel sick from all of this.
I tried previously (had a different user name, but couldn't get the log-in to work) to get data off my machine and upload it using the software, but I really couldn't make it work. Is there any kind of tutorial that makes it simpler? I think I have brain fog from weeks of machine not working correctly, which doesn't help.
I know this is a lot. Many thanks for any help!
Midge.
HOWEVER, my machine has NOT notified my sleep medicine provider that it's failing. It has continued to report low AHI. Last time, after my machine was replaced, I sent the old failed one (that was still reporting normally) to a resmed authorized repair place and they told me that five different things were broken. The ones I remember were the blower, the motherboard, the seals, etc. I asked why it was reporting as normal. They said that when the motherboard fails, it will report incorrectly.
I have four different questions:
1) When the machine gets loud and starts to sound like it's breathing back at me after I take a breath, in my experience that's usually right before or as it's failing. Has anyone else experienced this? Do you know why it does this?
2) Are the med equipment providers known to turn back the usage hours? My "new" machine that I received last week did not really seem new. The person who gave it to me at the equipment supply co. went into a back room and brought it back 30 seconds later with no box, no packaging, none of the usual plastic that covers the knobs, etc. She claimed it was new (of course) when I questioned it... but this new machine is already making that extra loud breathing sound, so I'm worried the supposedly week-old machine is failing.
3) Are there any strategies to get a machine replaced quickly? I am seriously afraid of having a cardiac event because of how severe my symptoms are. Whenever my machine starts to fail, the symptoms all return. Most recently with the return of these symptoms, I didn't suspect the machine at first, because it was only seven months old; it had been replaced last spring. But I've actually never had these symptoms other than when ASV stops working. (In sleep study my 02 sat went down to low 70s so my cardiologist has no doubt that the non-working ASV is responsible.) At the DME, no one was interested in helping me at all, and I basically had to go crazy on them. I'd love to know what you do to get machines replaced quickly if it's needed.
4) Aside from the noise issue, which makes me think this "new" machine (which I've only had for a week and I suspect might be a refurb) is not going to work for long, I've also slightly increased my settings.. I'm epap 6-8, ps 4- 16.4. My lungs hurt, and I think it's may be because I have to breathe hard to get enough air. Does this make sense? Also, sometimes I notice resistance when I try to breathe in, as if there's a blockage or something, but there's not. it feels almost like having to pull the air in beyond an obstacle. Is this likely from settings being too low or too high? I have changed the mask, the tubing, the water container, etc. But nothing helps.
BTW I paid around $500 to have my last ASV refurbished so that I can use it as a backup. However, it only worked for ONE night, and after that I was out of luck.
I am so discouraged and feel sick from all of this.
I tried previously (had a different user name, but couldn't get the log-in to work) to get data off my machine and upload it using the software, but I really couldn't make it work. Is there any kind of tutorial that makes it simpler? I think I have brain fog from weeks of machine not working correctly, which doesn't help.
I know this is a lot. Many thanks for any help!
Midge.
