My CPAP adventure begins tonight ....

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My CPAP adventure begins tonight ....

Postby robysue » Thu Sep 23, 2010 8:17 pm

Well,

After learning a bit about how to advocate for myself, getting copies of my sleep study reports and perscription, run-ins with apparently shady DMEs and less than helpful calls to my insurance company, I was able to find a quality DME that sticks to providing fully data capable machines. Had my appointment with their RT today and was given the choice of three full data machines. Long story short, I finally went with the ResMed S9 Auto with the Hi5 humidifier and a Swift FX mask with small pillows.

I'll be starting the therapy tonight! Wish me luck!
current settings Min EPAP = 4, Max IPAP = 8 and Rise time = 3

8/1/2010 sleep study results:
AHI = 3.9 [AHI = (#OA +#CA + #H w/desat) per hour]
RDI = 23.4 [RDI = (#OA +CA + #H w/desat + #H w/arousal) per hour]
Dx: Moderate OSA
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robysue
 
Posts: 1301
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Location: Buffalo, NY
Machine: PR System One BiPAP Auto
Mask: Swift FX for Her
Humidifier: System One Heated Humidif
Year Diagnosed: 2010

Postby Mrs Rip Van Winkle » Thu Sep 23, 2010 8:22 pm

Hope you sleep as snug as a bug in a rug!
I'm only a sufferer, not a medical pro. What I post are my thoughts as a sufferer, not that of the ASAA. As a moderator on these forums I oversee the posting rules. This is the internet, always discuss what you read with your medical team.
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Postby CrohnieToo » Thu Sep 23, 2010 8:28 pm

Good job! Good choice! Sleep well, wake rested!
ResScan 3.10 - Resmed S8 ResLink & oximeter
ConTec CMS-50D+ oximeter - Philips EverFlo 5L Oxygen Concentrator
PR SystemOne BPAP Auto w/Bi-Flex & Humidifier - EncorePro 2.2.14.0
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Year Diagnosed: 2006

The good, the bad and the ugly---night 1

Postby robysue » Fri Sep 24, 2010 8:50 am

Last night was my first night on CPAP.

The Good:
The S9 Auto says my AHI was 0.5 with total AI = 0.5 (all OA).
I didn't pull the mask off last night in my sleep.
Once I got to sleep, I got some really nice sleep in the middle of the night.
My sinuses liked the filtered air and they were NOT stuffed up when I woke up this morning.
The cat didn't attack the hose or the CPAP last night.


The Bad:
It took forever for me to get comfortable enough to fall asleep. I often take a very long time to get to sleep and at my request the RT set my ramp time to 45 minutes. (I know I can change this---she showed me how and I played with the ramp setting after setting the machine up in my bedroom last night.) I know very well that I was still tossing and turning long after the ramp period was up. I'd estimate that it took me about an hour or a bit more to fall asleep last night.

I prefer to sleep on my side and the exhale holes on my Swift FX kept blowing on my right arm.

My neck is sore this morning. I think this is because of the awkward position that I finally drifted off to sleep in. With no CPAP, I usually would sleep on my side with my nose pointed down and snuggled into the edge of my pillow or (my real preference) with my nose snuggled into my hubby's armpit or side. Whenever I tried to get into this position with my mask on, the exhalation flow would be really super bad on my arm or (even worse) be noticed by my eyes. So to try to alleviate the eyes and arm's problems with the exhalation flow, I turned my head upward away from the pillow and I think that's why my neck hurts. Clearly I've got some work to do in trying to find a more comfortable sleeping position.

Some bloating from air in my stomach. I'm really worried about this one. Once the CPAP was ramped up to my full pressure of 9cm, it felt like the air was blowing through my nose and into my mouth. My mouth was tightly shut and I don't really think that mouth breathing or mouth leaks was the issue since at the worst moments I felt like I was getting chipmunk cheeks from the additional air in my mouth. A couple of times it got bad enough where I moved the nose pillows off my nostrils so that I could exhale the excess air out of my mouth and then put the pillows back where they're supposed to be.

Sore and dry nose and very dry lips I thought I had the humidifier running properly last night, but there was very little water that was evaporated when I emptied the water retainer this morning. So I'll need to check that part of the manual again. I'll also need to find something I can use on the outside of my nose and on lips that doesn't cause problems for my skin and also doesn't contain petroleum. That might be a challenge.


The Ugly, Indifferent, or I don't know whether it's good or bad:
The machine's on-board data display listed leak rate as 7.4 L/minute. Is that good or bad? I don't know.

Not enough sleep. By the time I got the bedroom rearranged so that the CPAP machine could be placed on a small table by the bed on *my* side of the bed, I was exhausted, but keyed up. So hubby and I watched StartTrek, the Next Generation when it came on at midnight. That meant that I didn't get into bed until after 1:00 AM, and I don't think I fell asleep until after 2:00. The alarm went off at 6:45 AM (as usual) and I had to get up by 7:15 (as usual). I had the CPAP on and running 5.8 hours, but during that time I woke up at least twice for extended periods of time in addition to the hour that it took me to get to sleep. I'd estimate that I got somewhere around 3 1/2 to 4 1/2 hours of actual sleep last night.

Now that I'm not breathing filtered air any longer, my sinuses have started to clog back up due to ragweed.

My tossing and turning early in the night bothered hubby much more than the hose did when I finally settled down and used him as my pillow.
current settings Min EPAP = 4, Max IPAP = 8 and Rise time = 3

8/1/2010 sleep study results:
AHI = 3.9 [AHI = (#OA +#CA + #H w/desat) per hour]
RDI = 23.4 [RDI = (#OA +CA + #H w/desat + #H w/arousal) per hour]
Dx: Moderate OSA
User avatar
robysue
 
Posts: 1301
Joined: Tue Aug 24, 2010 6:47 pm
Location: Buffalo, NY
Machine: PR System One BiPAP Auto
Mask: Swift FX for Her
Humidifier: System One Heated Humidif
Year Diagnosed: 2010

Postby jrinker » Fri Sep 24, 2010 9:59 am

robysue, believe it or not, that sounds like a pretty good first night! You kept the mask on all night, didn't need meds to fall asleep, and got some good sleep. Not a bad start! You have a few glitches to work out, but I think you're on your way to cpap success!

Congrats! =D>

jrinker
Resmed Vpap Adapt SV Enhanced, Respironics Fit Life total face mask, Forma full face mask.
Complex apnea, original AHI 80
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Year Diagnosed: 2009

Postby robysue » Fri Sep 24, 2010 10:10 am

robysue, believe it or not, that sounds like a pretty good first night!


Yeah, the first night went better than I thought it would. Just wish it hadn't taken soooooo long for me to fall asleep. But then again, whenever I'm under any stress, it takes me forever to fall asleep. And first night on CPAP definitely qualifies as "stress."

I'm pretty happy with my first night. Crossing my fingers and hoping that my adjustment will be smoother than I expected since I expected a whole lotta problems.
current settings Min EPAP = 4, Max IPAP = 8 and Rise time = 3

8/1/2010 sleep study results:
AHI = 3.9 [AHI = (#OA +#CA + #H w/desat) per hour]
RDI = 23.4 [RDI = (#OA +CA + #H w/desat + #H w/arousal) per hour]
Dx: Moderate OSA
User avatar
robysue
 
Posts: 1301
Joined: Tue Aug 24, 2010 6:47 pm
Location: Buffalo, NY
Machine: PR System One BiPAP Auto
Mask: Swift FX for Her
Humidifier: System One Heated Humidif
Year Diagnosed: 2010

Postby jnm123 » Fri Sep 24, 2010 10:17 am

Roby--

Not to make light of it....but it sounds like a normal 1st night to me! 3.5-4.5 hours sounds about where I was at first.

You're on the right track, most definitely. Your issues presently are two-fold. One, your body (and almost more importantly your MIND) has not yet adjusted to the apparatus--it will, trust me. I too am at 9cm pressure, and I definitely remember the 'chipmunk cheeks' you speak of at first. Now, after 21 months? The same 9 cm, and I barely realize the machine is on, honest. I don't use a ramp any more, and once I put the mask on, I'm usually asleep in under 5 minutes. I used to need to put bandaids on my forehead to keep from having blisters from the fullface mask strap. Haven't used one in over a year--go figure.

All this did NOT happen overnight. The second issue is the tweaking you will need to do on a number of different levels. The sleeping position. Cutting down on the leak rate. The preparation ritual before bed that--at least for me--got me comfortable enough to accept the BiPap. The sleeping environment around you. All these factors, personally fine-tuned over a period of months, should get you over the hump.

Read this forum! There are tons of posts using every trick in the book to become acclimated to this thing. Try different methods out, different masks if need be & if they're accessible to you. And keep us posted--there's a lot of "paying it forward" on these threads, 'cause we're all in the same boat!

Good luck!
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Posts: 87
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Postby CrohnieToo » Fri Sep 24, 2010 10:48 am

Ayr Saline Nasal Gel can do wonders for that dry nose!! And it helps w/the nasal pillows sealing as well. Turn your humidifier up one notch to see if that helps w/those dry lips. And, yes, you can use Chap Stick on them at bedtime if you like.

Don't be bashful, if you are still awake when the Ramp ends, hit the Ramp button and start Ramp again. The same if you wake up during the night, go ahead and push that Ramp button if you need it.

Try a soft pillow that you can punch a depression in for the nasal pillows and hose to "lay" in, or put your face right up to the edge of the pillow so the hose and nasal pillows hang over the edge. As you learned last night trying to hold your neck unnaturally makes for tender neck muscles come morning.
ResScan 3.10 - Resmed S8 ResLink & oximeter
ConTec CMS-50D+ oximeter - Philips EverFlo 5L Oxygen Concentrator
PR SystemOne BPAP Auto w/Bi-Flex & Humidifier - EncorePro 2.2.14.0
User avatar
CrohnieToo
 
Posts: 7943
Joined: Mon Mar 20, 2006 9:18 pm
Location: Mid-Michigan
Machine: Resmed S8 VPAP Auto
Mask: Resmed Quattro FX Small
Humidifier: Resmed H3i
Year Diagnosed: 2006

Postby Mrs Rip Van Winkle » Fri Sep 24, 2010 12:48 pm

KY also works for the dryness if yo do not want to invest in the Ayr. In addition, it helps maintain a seal on the nasal pillows...just a little on the rim of your nostrils for the seal..a little up the nostrils and on the lips for the dryness.

What is the ramp set to start out on? You may find it easier to fall asleep with it not set too low. For me, I am a full pressure junky...I can not fall asleep using the ramp.

The air on the arm is an issue for me to...I now rest my head on the edge of the pillow and I use a baby pillow to put over my wrist...which I can also utilize it to better prop my head.
I'm only a sufferer, not a medical pro. What I post are my thoughts as a sufferer, not that of the ASAA. As a moderator on these forums I oversee the posting rules. This is the internet, always discuss what you read with your medical team.
User avatar
Mrs Rip Van Winkle
 
Posts: 4246
Joined: Thu Jun 08, 2006 11:54 am
Location: Nature Coast, Florida
Machine: M Series Auto BiPAP
Mask: Masks Vary
Humidifier: Yes

Postby robysue » Fri Sep 24, 2010 5:21 pm

First, thanks for the support. I appreciate it.

I really think my first night went much better than I was expecting since I *did* get some sleep and I *didn't* yank the mask off. But with only about 4 hours of sleep, today has been a bit long and I'm more tired now that I usually am at this time of day.

Re pillows: My favorite is a very soft and malleable down pillow. Yes, I eventually managed to get something close to the right kind of a trough dug into the pillow for the mask, but it wasn't quite right yet. I think all that issue is needs is just a bit of time and some practice. I don't particularly like having my head at the edge of a pillow though; I prefer my nose to be pointed down directly into the pillow. Not gonna work since every time my neck had some comfort, it seemed like the exhale flow was reflecting off the pillows and into my eyes. My eyes make it real clear that I don't want that. But I'm pretty sure I'll eventually figure out appropriate trough pattern in my pillow that my neck, eyes, ears, and nose can all be reasonably happy with.

It's going to take a while to figure out how to protect my arms from the exhaust flow on hot steamy nights, however, since we don't have A/C. And it was way too hot for long sleeves last night. It's not that my arm got cold; rather the breeze was a pretty annoying and an irritant. I think if the night had been cold, it would have been easier because then my arm would have wanted to be under the covers anyway.

Ayr Saline Gel or KY won't work: KY makes me itch really, really bad. Gels in general tend to make my skin itch and sometimes they trigger pretty bad rashes---I think it's some chemical that they use to turn stuff into a gel. Can't use gel and solid deodorants. Can't use gel type soaps either. Can't use gel topical anti-itch medicine for insect bites or poison ivy. I've had some many problems with gel products through the years that I won't even try them anymore.

Ramp is set for 4cm to 9cm in 45 minutes. I don't think it was the ramp that keep me from falling asleep. I really think it was stress and getting over tired cleaning and reorganizing the bedroom to create a decent place for the CPAP to live. And I've never been one to quickly fall asleep---even as a small child. Most nights I typically spend about 40--50 minutes to fall asleep. It just took me an extra long time to find a reasonably comfortable position and to get the brain to start shutting down for the night. A very common occurrence for me. And it was just as I was beginning to debate whether to hit the ramp button a second time because of the chipmunk cheeks when I wound up finding an ok way to use my hubby for my pillow and I fell asleep. Maybe tonight I'll hit the ramp button a second time as soon as chimpmunk cheeks start to bother me.

So to end this, I've got a couple more questions:

1) What's a "good" leak rate? In other words, what should I eventually be aiming for?

2) How long should I stick with a given mask before giving up on it? I plan on giving the Swift FX about a week or ten days. I figure if the exhaust flow is still really bugging me at that point, I probably ought to try out the Opus 360: In the DME I was having a really tough time choosing between the two since both were about equally comfortable, but had different quirks. Both were hands down more comfortable than anything else I tried on.
current settings Min EPAP = 4, Max IPAP = 8 and Rise time = 3

8/1/2010 sleep study results:
AHI = 3.9 [AHI = (#OA +#CA + #H w/desat) per hour]
RDI = 23.4 [RDI = (#OA +CA + #H w/desat + #H w/arousal) per hour]
Dx: Moderate OSA
User avatar
robysue
 
Posts: 1301
Joined: Tue Aug 24, 2010 6:47 pm
Location: Buffalo, NY
Machine: PR System One BiPAP Auto
Mask: Swift FX for Her
Humidifier: System One Heated Humidif
Year Diagnosed: 2010



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