ExuberantBeigePigeon1612

1. Do you think these summaries of key information are useful? Will they help you understand your sleep apnea experiences better, and/or better help you relate your experiences to the rest of the community?

They do interest me and I like how they're presented. I feel I have so many other health issues that I don't think it's useful for me to compare myself with the rest of the community. I have osteoarthritis, which interferes with my sleep. I also have bruxism. Actually, just getting to sleep at night is stressful! I should do my sinus rinse for my allergies (am also post-septoplasty by 6 months), I should use my accupressure mat and put lidocaine patches on for the muscle spasms from the arthritis in my neck. A hot bath also can help with this. I always wear my bruxism guard. I take muscle relaxants and melatonin for sleep. I'm supposed to wear a boot for plantar fasciitis but there's a point at which it's all just too much. So, with all this, I am sure my answers are influenced by many more factors than most people deal with.

1. Are these new reports easier to understand than the current bar charts?

I don't know that I paid attention to any of the bar charts to be honest. Sometimes bar charts are easier for me, sometimes I appreciate fancy infographics. It depends on how tired I am and how much mental processing I can handle. Sometimes bar charts are just less visually assaulting.

1. We plan on leaving the current reports (with the bar charts) available to view for any member who wishes to learn more detailed information. How likely are you to use these detailed reports?

I think they're more understandable than bar charts, but I also do like bar charts. For me, there are days when too much visual input is confusing and that would be when I'd get more out of the bar chart. Honestly, I'm often too tired to really deal with data the way I used to be able to. I'd love to say that these are great and I'm really excited but I often just feel overwhelmed and overloaded so I don't know that I'd make use of the data.

1. Please let us know any other comments/thoughts about the new survey reports.

What WOULD really interest me is individualized tracking and feedback. I saw that incorporated into a research project on Fibromyalgia. The system actually took the variables (such as pain, fatigue, hour you went to bed, what time you last ate) and tell you something like, "You have less pain when you go to bed before 11pm." I found that very motivating and it helped me change my habits. This isn't the same kind of data you are collecting, but it's what I would find most useful, personally!

I'm tech-savvy and I've got the guts to stand up for myself when I think I'm being wronged.

But you give the machine to an elderly person who is overwhelmed with having a machine and who might not question what's going on with the supply company (they had me on an auto-ship program and I had to return the supplies within a number of days and for some reason I wasn't supposed to ship it from Harrisburg where I was visiting my family for the holidays which would have put me past their return date limit -- I had to ship it from home).

Half the time, my head was spinning. What's it like for an elderly person?

Oh, and I called my doctor to have them switch me to another supplier (of my choice). I get this phone call from a company saying they have my supplies ready to ship to me. Something makes me hesitate... "Wait, what did you say your company name is?" Whatever the name is, I don't recognize it. I say, "I don't know who you are. Never heard of you! Are you related to (preferred supplier's name)?" The rep says, "I don't know, we might be." Alarm bells go off. Finally, the rep tells me, "We're (large hospital system)'s preferred provider." I told her that they're not my preferred provider and I have no idea how they got my information. The rep says the doctor's office sent it over.

I get ready to hang up and I tell her they're not authorized to send me anything at all, that I'm going to talk to the doctor's office.

She smugly says, "Well, we'll keep your information because I have a feeling you'll be using us."

So, (Big Hospital Organization) has its own provider... and when I ask for my information to go to MY preferred provider, it ends up going to someone I've never heard of who just so happens to be owned by the (Big Hospital Organization) that my doctor's office belongs to. Hrm... want to keep the money in the system, do we? It kills me that the rep was so arrogant.

Patient"care." (No, it's $$$$) :(

My mother is apparently allergic to every mask they've tried on her. Full face masks make her feel claustrophobic and the nasal pillow masks have made her nose very raw. She's quite frustrated as she was given many masks and told they were "hypoallergenic" but she reacts to them all. Insurance won't pay for a dental device (which actually was a prospect she was excited about trying). She gets frustrated being told how important treatment is, when she's not offered any working solutions. Just yet another mask. She feels suppliers are just eager to bill her insurance.

Frankly, I'm disenchanted with my suppliers who seem quite eager to get me replacement parts (hoses, mask cushions, etc)... I dread talking with them at all, because I feel pushed. "Your insurance will pay for it!" I get angry and let them know, "No, my insurance only pays HALF!" I do hate ordering supplies because you can never get a price quote on anything. "Insurance will pay for it" seems to be the attitude. It's a sick sign of the disregard for outrageous pricing when it's just assumed that "insurance will pay" (so the price doesn't matter). That's why people like me don't get supplies as often -- I have no idea if I can even afford them or not because I can't get a price quote.

If you're diagnosed with diabetes, there's lots of support. If you get diagnosed with sleep apnea, then you become reliant on a medical supply company that is basically a bunch of salespeople ready to pounce. They said they'd be monitoring my usage/compliance, but it's not out of care for me as a patient. It's to make sure the insurance company will pay for my machine. Which, mind you, they wanted to continue to RENT to me into the period where my deductible would become due again. Almost a full year, if I recall. The people I talked to on the phone misquoted what I'd pay out of pocket for the machine. I've gone deeper into debt and was getting these yellow pages with red writing that my account was "overdue" when I was on a payment plan.

I'm very soured, as you can tell.

My sleep doctor and I were at odds. I was complaining of daytime fatigue despite using my machine every night, all night long. I had a MSLT (Multiple Sleep Latency Test). The lab was a hole-in-the-wall. It's not that I want hotel accommodations, but I told them I couldn't sleep in the room that was offered to me. Why not? "Do you see the leak in the ceiling? There's a big wet spot on the bed!" So, I was taken to the children's room to sleep on an uncomfortable twin mattress. I don't mind the twin mattress, but I have arthritis in my hips and I dunno... I guess the "feature" of this particular bed was to protect the mattress from bed-wetting. It wasn't meant necessarily for comfort. I was told I had to keep the door open to use the restroom because the light wasn't working in the restroom (nevermind I know there are cameras in the room). During the MSLT, the room being on an outside wall was problematic. I heard street traffic, people on cigarette breaks.

The technician was less than friendly. Not like the night people. I guess they didn't communicate her schedule well to her or something... she wasn't happy to be there and said she normally doesn't work that day. It seemed to frustrate her right off the bat when I didn't fall asleep on the first or second try. The whole experience just had me feeling rather rattled and conditions were less than ideal.

So, my sleep doctor sent me a letter that poo-poo'd my daytime fatigue. I COULDN'T be tired if I didn't fall asleep within 15 minutes (in a strange place, with a good amount of noise, after a rather bumpy night with a cranky daytime tech).

I solved my own problem. Why couldn't she look at my data and tell that my machine was powering itself off while I was asleep? There was an issue with the power cord. Bump the cord ever so slightly, and it turns itself off. Must have been a known issue because the replacement machine had a really robust-looking power cord.

I am not normally a complainer, believe it or not. For my asthma, I've always been treated well. For my chronic pain, once I got the right doctors, I've been handled well. For sleep apnea, you're given a machine and then you're on your own with glorified salespeople ready to pounce on you. Where's the support system? Why can't I get a price on supplies? I dread the day I have to get a new machine. Every 5 years? I don't think so.

Don't know anything about the jaw bone surgery. It sounds painful. I've got my fingers crossed that the Inspire implantable device will eventually be covered by insurance companies. I think my understanding is that it's meant to be only for obstructive sleep apnea (not central apneas) and it's meant for people with moderate to severe apnea. I don't recall what category I fall under, but someday I'd hope it may be made available to me.

I do not have autism, but wearing my mask while awake definitely helped me ease into therapy and is something I generally recommend to "newbies" who are struggling. I know your situation is complicated, and I feel for you. The improvement I've seen in my life after using CPAP makes me want to strongly encourage folks to try to persist.

I have two parents who both do not use their CPAP. I'm very sad about it. It can't be forced on anyone but the benefits can be life-changing. Even life-saving for some. I know that untreated sleep apnea can lead to heart problems and a growing number of other risks that I often see as I read more about it. I want my parents to be around for as long as possible. At times I feel helpless and frustrated about their not using CPAP, but there is not much of anything I can do.