Newbie needs some advice/comments

SleepyGeorge · Post by **SleepyGeorge** » Sat Sep 10, 2005 9:39 am

Well I tried the machine last night and it lasted about 20min before my lungs felt like I had run a marathon from fighting the back pressure. Wow- Cflex sure does make a difference. I will just have to go back to no machine until monday since at this point I think I get more sleep without it.....

Hey Margaret- Thanks for the idea. I was kind of thinking the same thing too. I will see if I can get a second mask when I go back on Monday to swap machines again...Only problem is that I am not sure what kind of mask to ask for. The reason I have the swift is because all of my upper front teeth are missing. I wear a partial during the day but I cannot wear it while I sleep. When I wear a nasal mask(tried one during my sleep test), It ends up pressing my upper lip into my mouth since there is really nothig to support it...Hmmm....WHat to do....I guess I didn't think this wold be this hard just to get started!!!

Margaret · Post by **Margaret** » Sat Sep 10, 2005 10:29 am

Lori (I think) is considering the AURA. It is supported from above and hopefully doesn't rest on your top lip. I would check it out.

Margaret

SleepyGeorge · Post by **SleepyGeorge** » Sat Sep 10, 2005 10:45 am

looks like a possibility. I can see those hoses get annoying though. I have a rather large nose so I think they would rub. Gee...don't I sound attractive. Large nose and no teeth!!!LOL

yawn · Post by **yawn** » Sat Sep 10, 2005 4:36 pm

HI SleepyGeorge,

I'm sorry you're having such a rough start with CPAP therapy. Believe me, we all understand...we've all been there. It is really tough to get used to because it's very unnatural. Please don't give up though. You will find all the support you need on this Board. You need to take advantage of us because we all want you to succeed. It's so much easier to give up but you'll just be shortening your life if you do. You can do this!!! You really can!!!! I think you need to talk to your DME again and tell her you want a Remstar auto with C-flex and a heated humidifier...and not an old used machine...a new one that really works. You're becoming educated which scares DMEs...they like us to be ignorant so they appear all-knowing. Stick around here long enough and you'll be able to tell them how to do their job.
As far as a mask goes, I don't know what to tell you. Hopefully somebody else has the same issues as you and can advise you. I personally prefer the Swift mask but I've been doing this since July and am pretty used to the process. When I first started, I relied heavily on the "ramp" feature. It would start the pressure at 4 and the "ramp up" to 9 over a 45 minute period. I would be asleep by the time it hit 9. If I woke up during the night, I would just hit the ramp button again. It really helped me to get used to the air rushing in at me. I don't even bother with the ramp anymore and my pressure is now set at 10. If I can do this, ANYBODY can...including you. My other favorite mask is the Activa. If you do a "search" on Activa, you'll find tons of information on it. The Activa works differently from other nasal masks because it "suctions" gently onto your face which keeps it well sealed even if you roll around a lot. Maybe your DME could let you try one. It's a little weird at first because it sorts of "breathes" (inflates and deflates) but you get used to it pretty quickly. It's always nice to have at least 2 masks to trade off with. Sometimes my swift will irritate my nose and then I switch to the Activa for a few days.
I'm sorry I'm rambling on...I just really want you to stick with this. It really will add years to your life.
Have a good week-end! Amy

cat-a-tonic · Post by **cat-a-tonic** » Sat Sep 10, 2005 6:13 pm

SleepyGeorge - Could you try the full face masks? Maybe that might help! Worth a try!

SleepyGeorge · Post by **SleepyGeorge** » Sat Sep 10, 2005 7:14 pm

Yawn- The activa looks like a good possibility. I will see if I can try that one out. Thanks!!

cat-a-tonic- Full face masks that I have tried don't seal well for me since I have a full beard.

SleepyGeorge · Post by **SleepyGeorge** » Mon Sep 12, 2005 8:32 pm

Well I went and finally got a remstar auto WITH C-FLEX. The DME was completly embarrased!! First she tried to tell me I was wrong "because it has the sticker!!" and within 20min I had her groveling at my feet. I ended up going home with a brand new rental (0 hours) and a new activa mask to try out. They are not charging me for the activa nor are they charging me for the machine rental for 2 weeks. I already told them I will be buying my machine online since they want about 3 times what it costs me online.

So tonight I will finally get to try this out and see what happens. They set the pressures at 5-15 and the flex at 3. I will also be using the activa because it will probably be easier to get used to the pressure that way. I'll let you all know how it goes!!!

Thanks for all the kind words..It helps SO much!!!!

George

PS- The DME went to the storage room and found 4 more machine with stickers that were not c-flex!!! I am sure they will be talking to their supplier...I feel sorry for other people that got stuck with the non-cflex and didn't know it!!