Problems still

[Mew Mew]

My problems are still here. I have tried adjusting my mask and sometimes I can get it so my nose doesn't clog up. Also what I was told about the ramp is it gradually increases pressure. Mine is set for 30 min. But itn doesn't seem to do that. Since I got the machine almost 2 weeks ago it takes me over 1/2 hr. to go to sleep where as before in less than 10 min. I'd be asleep.
I called the supplier and they said I had to go back to the doctor to get another prescription for a different mask. She also told me to check the pressure during that 1/2 hr. I said how am I supposed to do that when I am laying down trying to go to sleeep. No answer.

Can you buy different masks on your own or do you still have to have prescription? I am totally fed up with the health care system the way it is now. Really right now I don't give a hoot about the CPAP.

My husband who is 97 has advanced Alzheiemer's. He basically doesn't walk except for couple steps to get out of bed into wheelchair.
I called the visitingn pysician 2 weeks ago saying he may possibly be getting UTI. Took over a week to get someone out. I have aides helping me from 9 AM until 10 PM., Well after the evening aide left he started hallucinating. Thinking things were in his bed. I tried to calm him down and at 3:30 AM he got quiet fso I went to bed. When I got up at 8:30 he had climbed out of his hospital bed and was on the floor. He has a fractured sacrum, left side of pelvis fractured in 2 places plus a few other little breaks that have not been givn to me.
I reinjured a torn mensicus that was getting better 2 days ago so I am back onn crutches. Call the doctor about husband everything has to go through the hospital. Call the same group for me to get in sure in 3 weeks. They are the same group that replaced my other knee last year and took care of torn meniscus. So much for helping in an emergency.

Sorry for the rant. I have no one other than husband and I am rather frustrated by all the red tape anymore. Now I'm off to hospital.

What to do about the CPAP, In don't understand everything, manual doesn't help. Saw this morning AHI was 5 something. Let them take it back.

[JDS74]

I am so sorry for your circumstances.

See if you can get the cpap back.

Then we can work on getting your problems resolved.

First, can you get a copy of your sleep study? It will have very useful information.
Second, get a copy of your prescription. You'll need it to go elsewhere for another mask.

[kaiasgram]

You can ask your doctor for a mask prescription that says "patient choice" rather than specifying a particular mask. That's the easiest way to go. It's possible with some masks to buy all the mask "parts" separately without a prescription and then assemble the mask yourself. Not possible with all masks though, so it's easiest to have a "patient choice" prescription. If you can buy out of pocket without using insurance you can use that prescription with the host of our forum, cpap.com, to order masks and if you purchase return insurance then you can return masks within 30 days if they don't work well for you. (Some masks have free 30-day return policies.)

I know you have a lot going on right now but if you want to understand more about what's going on with your machine -- the ramp, pressure and all, we're here to help. You could use SleepyHead to actually see how long your ramp period is, where the pressure is going, and when apnea events are occurring, etc. This has helped people get their therapy fine-tuned and working better for them.

You can also watch a brief video tutorial on your S9 Autoset which will show you all the menus (including the clinician menu where the pressures are set) and where different features (like ramp, EPR and climate control) can be adjusted. Use the link at the bottom of my post.

I'm sorry you and your husband are having such a rough go of things right now. Trying to adjust to PAP therapy is not easy but can be especially challenging if there's a lot of other stress going on. But two weeks is not enough to conclude that this isn't going to work for you.

Keep asking questions here and we'll take one step at a time.

[jencat824]

MewMew,

I feel your stress. I'm caregiver to two family members, one (my dear mother-in-law) who is in a rehab facility & has been there since Dec. Overall, dealing with rehab's & nursing homes is stressful. Have you considered having your husband admitted there, at least for rehab on his injuries & possibly as a live-in alz patient, in a specialized 'lock-down' Alzheimer's facility? I know this is a very personal decision & I don't know you, but I've been where you are when my mother had Alzheimer's several years before she passed away & I had to make the difficult decision to put her in a facility. I chose one that had a good reputation & visited at various times of the day, unannounced. This is the best 'monitoring' tool of how the facility is run. It also keep staff on their toes, since they don't know when you might show up. I know you are alone, that's why I offered the info above. I may have overstepped my bounds a little to suggest it, but I just feel your stress in your words.

You need time to work with your CPAP, get your RX as kaiasgram suggested & order your masks online, that way you won't have to deal with the stress of the DME on top of things. I recommend cpap.com, our forum hosts, but anywhere might be better that getting negative answers in your quest for a mask that fits properly. CPAP.com has mask insurance, it varies depending on the mask. Also, newer masks sometimes have a free 30 day return policy. Getting you healthy will help a long way with your stress.

Also, remember that to be there for your husband, you MUST take care of yourself. You have to put YOU first some of the time in order to be there when he needs you most. Do something little for yourself. Be it a cookie, watch a movie or just sit & read for an hour. This will help clear your mind - try it, I'm proof it works.

If you want to talk about the caregiver stress privately, feel free to PM me. Everyone here, me included wants to help you with your CPAP issues, so when you can, just let us help. In the meantime, I'll say a prayer for you & your husband.

Hang in there,
Jen