New Machine, no support from anyone

[maryseas]

Hi-I'm new. My neurologist sent to a sleep doc when I complained of extreme fatigue, and he sent me home with a portable machine. To my real surprise, I have sleep apnea. He retired that day, just as he wrote me a perscription. I researched a bit, then called the office 5 times and could not get anyone to respond. Emailed my neuro with this result and she got a doc there to email me back with links to Equipment places to buy. I'm on a 100% discount with this research hospital (no insurance and terribly broker right now) so I proceeded to see if I could get a machine donated. Long story short, these dealers wanted to set me up with something used that had no read outs, and of course wanted me to pay top price for supplies purchased from them. Since I had no money at the time I simply waited, saved some money and bought a slightly used System One BiPap Auto with BiFlex, second hand. This was a much better machine than was prescribed, but it was something I could afford and seemed to be a current model--and very nearly new. I have the instructions to set up the prescription pressure (have it on auto right now) and am comfortable with electronic gadgets and software. I've used it twice and do feel a bit better, but am now noticing some things. I stop breathing when I'm on my right side, early in the morning after several hours of sleep. I have a terribly large thyroid (both sides) that may be part of the problem. Last night the machine woke me in the middle of an event, with lots of air and pressure, and my heart was beating very fast. I also couldn't tell if I had failed to breath through my nose for this event (have nose mask), but once awake all calmed down. Took a while for my heart to slow down. Since I'm not sure that my apnea is central, as part of a neurological problem I struggle with, I'm beginning to think I might want more help than I'm getting. Since I can't afford anything, I'm on my own for now, but any suggestions would be very helpful. The research hospital I go to sees me without cost, but their sleep center refers sleep studies out to other providers. That's why they gave me the take home machine. My insurance has a $15,000 deductible--essentially I have no insurance. The hospital where the clinic is located has been really good to me for everything and I am very grateful for what they've been able to do for me. However, getting any response from the sleep clinic seems impossible. Any suggestions would be appreciated. Also, I've noticed that the mask "burns" my skin. I'm going to soak it again (have done so once already) to see if this might help. Otherwise I may be allergic to the silicone. Wouldn't surprise me as my skin is sensitive to many things. I'd like to find the software needed to read the card and see what I could learn from the data on the card.

[cflame1]

It's a very good machine... a newer model of what I use myself.

When you can get the software... can't help you with that... you'll be able to get full data, and somebody here will be able to help you understand it.

[rested gal]

Check your private messages, Mary.

[unadog]

That is a great machine, both for treament, and for "diagnostics" to try to get you set-up right.

Once you get going with software, we will need to see data, as well as your previous settings, etc. The great thing about the newer machines is that they can now detect central events more accurately than in the past (both the Respironics System Ones and the ResMed S9's.)

Although that machine won't really treat centrals, at least we can see what is going on. It is also true that pressure settings can help cause centrals, so we might be able to help you tweak pressure to eliminmate some. The newer machines can also respond more aggressively to obstructive events. n the past the pressure was restricted above 10cm in some cases because tehy were afraid of acusing apneas.

Plus, I love BiPaps in comparison to CPAPs. I would never want to use a CPAP again, even if it was sufficient for my therapy. I find BiPaps **so much** more comfortable! Not all folks agree, but you have a top-of-the-line machine that should help us get you pretty far down the road with diagnostics and therapy. Good job on that purchase - you done good!

Good luck!

Best,
Michael

[nanwilson]

Hi Mary
I don't have insurance either and live on seniors pension. I don't have a data capable machine but its working for me and I have so much more energy now. If I could get rid of these $%$@X& allergies I would be so much happier . Your mask was probably cleaned by the clinic and they use really harsh chemicals to do the trick. I use a mask liner so it doesn't touch my skin. If you do a search for remzzz on this site it will show you how to make your own. I used an old well washed white t-shirt and layed my mask on it and drew around it with a pencil, then cut it out but made it 3/4 of an inch bigger all round, cut a hole for my nose and now I use that. I made about 18 of them out of the t-shirt, chuck them in a nylon wash bag every couple of days and put them in the machine. I also bought a Swift LT mask from one of the other members on this forum. The clinic wanted $250 for it but I only paid $45 and it was new, still sealed in the original bag......there are ways to cut corners you just have to be diligent. I count my pennies too and "make do" with what I can.
If you want to talk just "pm" me and I will do what I can.
Good luck
Nan