It ain't easy being CPAP

Soooooo.  I've had the unit a week now and my progress has been....irregular.

I called Apria on Monday morning and explained to the woman who answered about the mask issue.  She was (amazingly) nice about it.  She was from their national call center in Phoenix; even if you call the number for the local Apria office, you get the national center.  She said she would call Rancho and tell them I was coming, and that I should go between 2-5 p.m.

I marched in around 3 p.m.  The girl up front asked why I was there and I told her the national center should have called.  I signed in.

I saw Tanya, my bossy R.T. from the other day, sitting at a computer.  She gave me a strange 'why are you here' look.  I smiled and used the restroom next to her station.

To their credit, I didn't have to wait at all.  After exiting the restroom, I was called in right away by the male R.T.  I think his name is Dale.  He told me he doesn't use CPAP, but his wife does.  I told him about the Kaiser/Apria mixup and he said the paperwork was ambiguous.  It is as written - 'or best fit' (which I found out later weren't my orders at all...more on that in a bit).

I told him I wanted to try a nasal pillow mask since my Flexifit was so uncomfortable.  He showed me the two models they had, Swift FX and LT.  He said 'most ladies' prefer the FX because it has the softest headgear.  I looked the two over and said I'd try the FX.  He fetched me a set and we set up my CPAP machine which I'd been told to bring.  The mask came with medium pillows which he said were probably the right size.  He showed me how to adjust it.  I put it on and we connected it to my machine.  The sensation was strange, but I felt I understood how to wear it.

That was that - I signed a paper and was on my way.

Monday night I put the pillows on and had a devil of a time falling asleep.  The pillows also rubbed my nose raw.  Tuesday I went to Target and bought Ayr gel lotion for my nose (I saw a recommendation for it on the Internet).  Tuesday night I had another battle with the pillows and ended up taking the whole thing off in the middle of the night and sleeping without CPAP.  Needless to say, I felt crummy yesterday.  Last night, I couldn't get the pillows to work at ALL.  After a fruitless struggle I gave up and put on my Flexifit 405.  Oddly enough, it felt strangely comforting to have the old mask on, and I fell asleep readily and stayed asleep until the alarm/husband nudging me awoke me.  I didn't wake up once during the night.  I feel pretty good today, although I only got 5-6 hours sleep which is not nearly enough.

Lucy, the case manager from Kaiser's sleep center, called today.  I told her the saga of Apria and she said they have a LOT of problems with them.  She read my orders direct from my chart:  "Patient to be fitted for a mask by Apria".  Nothing about only a nasal mask, or specifically the Flexifit 405.   I promised to send her a photocopy of my order.  She told me they shouldn't have pushed the Flexifit 405 on me in the first place; it's for broad noses (nicknamed the 'turtle'), and the 407 is the newer/better model.  (The 405 is cheaper -- and I'm sure they have a warehouse full of those buggers!)    It turns out the 407 is what Kaiser gave us for the titration study.  I slept fine with the 407 during the study, although it is cumbersome on the face.  Lucy loves the Swift LT.  She spent some time explaining to me how my FX is supposed to be worn.  But I'm not sold on nasal pillows.  At least so far, it hurts my nose and doesn't stay on well.  I'm going to give my FX another college try tonight.  I may well return to Apria and ask for another exchange....not sure if I'll ask for the 407 or for the LT.

She said they would fax our prescription to a supplier if asked, if we wanted to buy a mask on our own.  She cautioned me that no masks are comfortable.....I guess it's the lesser of evils...

She went over my medical chart with me.   My sleep study revealed that I woke up 12.4x an hour.  Between 6-15 is considered 'mild' sleep apnea.  I woke up 13.3 times an hour while sleeping on my back and 9.9 times an hour on my side.  (Impressive that they knew when I was on my back or my side!)  More worrisome, she said, was my oxygen level.  Anything below 90% oxygen is unacceptable.  My oxygen went down 21.7% so it was around 80 %.  It's bad to have one's oxygen lowered because we need oxygen for heart, brain, lungs, nails, etc.  The good news with the titration study was CPAP completely eliminated my apnea.  That's why I felt so good the week I had the Kaiser unit.

I told her that I felt better on the Kaiser APAP than I do my CPAP (although the mask struggles might account for some of my non-success).  But of course, APAP is more expensive than CPAP so the Kaiser bean counters don't want to pay $100 per patient more for APAP.

The way they figured my CPAP pressure was to take an average of pressures that the APAP reported I needed.  I ranged from 4-10, so they put mine at 9.

Kaiser will only cough up the APAP for really high pressures, she said, so I guess that counts me out.

  Ollie gives me kisses while I wear the  Swift FX         after bringing it home on Monday.

Three-Night Report

The new CPAP *is* making a difference in how I feel during the day, although not amazing like I felt with the Kaiser loaner APAP - with that one, I thought I could leap tall buildings!.  It took me a full hour to fall asleep last night.  The Flexfit nasal mask is NOT comfortable.  As I tossed and turned,  I kept hitting the 'ramp' button to make the pressure go back to 4.5 as I tried to fall asleep. My Hose Buddy hose holder came in the mail; it's a rod just under 4' tall that slips under the mattress, equipped with a hook to hold the hose upright and pivot with the sleeper's movements.  It helped.

I also used the humidifier last night.  I tried going without on Fri. night and woke up with a really dry nose and mouth.

I took a close look at my paperwork from Apria, wondering how they messed up from 'any mask patient wants' to 'this is the only mask Kaiser wants for you'.  I found it!  Uner 'CPAP Unit Remstar' it states 'Kaiser Standard Mask Flexfit 405 or Best Fit'.  I guess they didn't notice that BEST FIT part!  I am planning to storm into Apria tomorrow and wave that under their noses, and get my nasal pillow mask  They had better not give me a hard time....

I hope the nasal pillows work.  The nasal mask is really uncomfortable. I don't think it's the same brand that I got as a loaner. 

Hubby is happy with the new set up - no more snoring to listen to!  He's getting a better night's sleep too.  :-)

Wearing my Flexifit mask at Apria

Back in the saddle again (I hope)

After surrendering the loaner machine to Kaiser a week ago Wednesday, I wondered how long it would be before I got my own machine.  Would I be one of the lucky ones that the RTs at Kaiser said got a spanking new machine 'drop shipped' to their home "in 2-5 days"?

Nope.  2-5 days came and went, along with an extra day - Labor Day.  I resigned myself to being tired and draggy once again.

To my credit, I didn't call and bug Kaiser, although I wanted to!

Then, as I was rushing around on Wednesday from courtroom to courtroom, I received a call on my cell.  It was Apria telling me to come in and get my machine and mask.  Yay!  They had called my house and my husband gave them my work and cell #s.

I made an appointment for the very next afternoon at 2.  The office was in Rancho Cucamonga where I live, which was nice; closer than driving to the sleep center in Fontana.  When I arrived there were two ladies in the waiting room.  The three of us were ushered to a large room where shiny new CPAP machines were  set out.  They were the same machines that we were loaned, with one major exception:  these were CPAP, or fixed pressure, rather than APAP, or automatic adjustable pressure.  The machine is a Philips-Respironics "System One" REMstar Plus with C-flex with heated humidifier.

It turned out only one of the ladies was a patient; the other was her mom who had been using CPAP for years.  Later a gentleman joined us.  He had just missed the exciting informational video that told us the same stuff about sleep apnea we already knew,  and included lots of plugs for Apria and how wonderful they were.  (Apparently necessary, since the Internet is rife with complaints about how terrible and incompetent they are - Google 'Apria problems' and you'll see.)

After the video our assigned RT (respiratory therapist) Tanya began her spiel.  Her name tag said she was the senior RT.  I annoyed her a bit by jumping ahead with my questions; all that reading I've done on the Internet!  She did a good job of showing us how to use the machines and clean them, going into a lot more detail than we got at Kaiser (of course, we took 1 1/2 hours at Apria to go over what we spent about 10 minutes doing at Kaiser).

I was surprised to see a small box containing a nasal mask sitting in front of my machine.  I told Tanya I thought I was going to get to try on and choose my mask.  No, she said; your doctor ordered this nasal mask for you.  "See?" she said, pointing to my paperwork that said 'nasal mask'.  The other lady had a full-face mask sitting in front of her.

We were told that Apria allowed "one mask exchange within 30 days" if you didn't like your assigned one, but it had to be the same type; i.e. another nasal mask for me.  If I wanted nasal pillows (which sit in your nostrils with nothing over your nose), "you need to get a different prescription".  Hmmm.

We were also told that no way would anyone be allowed to try on different masks; once a mask was opened it couldn't be used again for anyone else.  That took "trying on" completely out of the equation.  I can kind of understand that; who would want a mask someone else wore?  On the other hand, couldn't they have samples?  They had *one*, anyway -- Tanya used baby wipes to clean off a mask to loan the gentleman in our group, since apparently his mask had been sent to his home.

My assigned mask was a Fisher & Paykel "Flexifit 405" nasal mask.  It looks very much like the one I test-drove from the sleep clinic.  It might be the same one, although Tanya told me to use the 'small' mask size in the box.  Since I've had a mark on the bridge of my nose all day long from sleeping with it last night, tonight I may try the 'large' included in the box.  There is no medium size, oddly. 

The hose in our kits is a lot nicer than the ones Kaiser gave us, as the Kaiser RTs had promised.  Mine is nice and pliable, while the Kaiser ones were hard and stiff.

After training ended we packed up our kits and went home.  I was eager to sleep with my brand new CPAP.  I made a run to CVS to get a couple bottles of distilled water for the humidifier and set up the machine on my nightstand, filling the humidifier carefully below the fill line.

Then I put on the new mask, turned on the unit, pulled twice on the mask to seat it as we'd been taught, and lay down in bed.  The clock read midnight.

I pushed the 'ramp' unit which cut my assigned pressure 9 in half, to 4.5.  That pressure feels a lot better than the full 9.   It's supposed to let you ease into sleep with a slow increase in pressure over 15 minutes.   Alas, sleep did not come quickly; I kept getting bombarded with the 9 pressure when 15 minutes passed.  All in all I lay there an hour, pushing the ramp again and again. It took an Ativan to get to sleep (maybe - the Ativan bottle said expired in 2007!)

I awoke at 7 a.m. having gotten 6 hours sleep.  Today I do not feel great.  Better than usual yes, but great, no. Not at all the wonderful chirpy happy self I was during the week with the Kaiser loaner APAP.  I wonder if it's APAP vs CPAP?  Or that I had issues getting comfy with the too-small mask last night?

I called Kaiser today to talk to Kim, the RT, about the mask thing.  She was very surprised to hear that I was told "the Doctor ordered a nasal mask".  My paperwork was supposed to say "any mask comfortable" and "patient to be fit for mask by Apria".  I guess to Apria, that meant "we have lots of those Flexfit 405s stacked in the warehouse; give her one of those".  (I saw on the Internet there's a new version of that mask...the 407...hmmm!)

Kim got ahold of Julia, the Apria liaison for Kaiser Fontana, and told her about my problem.  Supposedly Julia has arranged that I can go back to Apria and choose a mask - ANY mask - nasal pillows included.

Kim said I should talk to Julia first.  Welllll, guess what.  I got her message machine.  Since it's 4:15 on a Friday afternoon, I sincerely doubt I'll hear back from her and I certainly won't be able to get to Apria before they close today.  And if I just show up at Apria?  They'll tell me they can't give me the pillow things without a prescription.  Catch 22.

I guess I'll start calling Julia on the hour beginning Monday until I get her -- and get her to call RC Apria to tell them to give me the pillows.  Or maybe I'll ask Kim to fax the prescription to me.  In the meantime, hopefully I can make the Flexifit work....

Back to Zero

Soooo...I'm back to zero - the CPAP unit is gone, and it's just me and my apnea again.

It's a bit cruel.  Almost a week of wonderful sleep, and then they whisk the machine away and leave you twisting in the wind while they analyze your data.  Your machine will be 'drop shipped' one day, but you don't know when.  Could be as little as 2-5 days.  Could be more.  They're noncommittal.  Keeps them from getting pesky phone calls, I guess.

Labor Day holiday is Monday, meaning a non-work day, meaning longer to wait...

I want my nasty uncomfortable mask back!  I'll wear it!  As long as I get that air down my throat and a decent night's sleep again!

So I feel like crap warmed over again.  Woke up groggy, went to work groggy, to the gym groggy; wandering groggily through the day.  Will groggily pack up my stuff, drive home, walk with daughter and dogs, and probably fall asleep in fornt of the TV like always (before CPAP).

It was a little hard to go to sleep last night WITHOUT the CPAP...I guess I grew kind of used to it.

I want to feel good again!

I wonder if anyone's reading this Blog.  My guess is no.  Nobody's left a single comment.  I made it so anybody could comment, and nobody has.  Off line yes - notably my mother with her vitriolic fusillade of recriminations about how this is my fault because I've eaten myself into a giant fat pig.  And how I will probably get all the concomitant ailments that go with fat pigginess like Diabetes 2, high cholesterol, high blood pressure etc etc (I have the cholesterol issue, but not the others.)  The price of sharing, I guess.

Okay, must pack up now and make the groggy trek home...

Day Six

I brought the loaner unit back to Kaiser this morning as required.  Next step is for them to analyze the data chip from the loaner unit, along with my diagnostic results, and issue a 'prescription' for my permanent unit.  It's a bit confusing from here on out - they said it could take 4-6 weeks for "final results" to be complete, but we may get our CPAP unit drop-shipped earlier.  I said to the receptionist, "So we get to find out what good sleep is, and then have to go back to lousy sleep?"  She said yes, but it shouldn't take very long to get the drop-ship.  At the class last week, we were told it could be as few as 2-5 days.  So we shall see.

I have to admit I'm looking forward to sleeping without the infernal mask....I don't like it.  But I'm not looking forward to the apnea and feeling lousy again.  :(

I hung in there for the past six days with the mask, even though it bugged me like crazy.  This morning I took it off at 6:30 a.m. so I'd have a half -hour catnap without it.  Night before last, I woke up in the middle of the night; I was so tempted to take it off and keep it off, but I resisted the temptation and put it back on after visiting the bathroom.  I'm glad I did because it really makes such a difference in my alertness level and well-being while awake.

I saw an advertisement for a soft mask that works like a balloon.  But it's very expensive, $170.  I'm sure the DME from Kaiser will only have a few choices and a soft mask (in leopard print!) won't be among them.