Another Newbie Hello (from Canada) My cpap chronicle

[Froro]

After going through the denial, fear, etc etc over the last month I'm finally at the acceptance and embracing period of my life.

Wanted to say hello to all of you. Between here and a couple other boards you all helped me get to that final phase much quicker so thank you to whomever started this board for helping take the fear out of all of this for me.

I've read so much on here and elsewhere but am still a newbie to the actual equipment and have only been using the cpap for two nights now. (and part of today because last night was not such a good night)

Anyhow. I wanted to say hello. My first night was heavenly (other than the waterfall incident and near drowning...LOL) but I persevered and had the best night's sleep ever!!

Last night? not so good, I woke up a lot to fiddle with the mask that didn't seem to have a good seal. I changed the nose thingies this morning and actually went back to bed this morning with much better results for a couple of hours. Tonight I shall endeavor again and try not to get too stressed out about achieving high success every night.

I want to thank all of those who have shared info and given my supplier did not allow me to see my data results I really really appreciate having found that knowledge on the boards. I'm a big propronent of being involved in your own treatments and taking control of your own health.

I never would have thought I had apnea to be honest. I've always had bizarre sleeping patterns and generally get by on very little sleep. My dad and I used to pass each other in the hallway at night (usually heading to steal the other ones book), I just figured genetically I was like him...(I have since been pestering him to get tested as a result since my diagnosis). I went simply over the snoring issue, which I've had since childhood and it got progressively worse with each of my pregnancies (4 kids). I chalked it up to my deviated septum causing me sinus issues. It's been about 5 years since I have consistently slept in the same bed as my husband for a whole night as my snoring disturbs him so much. Finally went to the doc to discuss getting this nose of mine finally fixed. I was a tomboy and broke my nose several times as a kid. Since we are in Ontario and the whole nose job thing can go either way for our insurance coverage he recommended I do a sleep study as well for back up to ensure my nose job would not be considered cosmetic.

To my utter shock...I have apnea. Moderate, up to 42/hour. Being claustrophobic this completely freaked me out. Why do they not have pictures of the less obtrusive masks in the media, only the massive masks and headgear??? Way to completely freak out someone.

Anyhow...I went to my second study a few days after my first, panicked, anxious, armed with lorazepam (ativan), my laptop to take my mind off things and praying for a miracle cure to be announced. No such luck on the latter. I was a mess when she brought out the masks, I was teary and blubbering like an idiot. How to make a 40 year old woman feel like a child again....anyhow....I talked myself down, settled on the nasal pillows as I knew there was NO way a facemask was going to work, also there was no way anything in my field of vision would have worked either. I had a great sleep once I settled myself down (no drugs needed...YAY). I met with the sleep doctor last week and was grateful to finally be getting my machine as I went from being afraid of the machine to being afraid to go to sleep without it.

So here I am. I went up to bed again a little while ago and wore the mask with the machine running again to once again get familiar with the sounds, fiddle, get used to sounds again, that kind of thing so I don't wake myself up with strange noises and get a good night's sleep again. I felt so fantastic yesterday, I want energy again.

I ran a humidifier in the room for about a month so hubby could get used to a noise during the night. I'm not sure if it worked or not because instead of me moving to the sofa he has done so the last two nights. He tells me it's not because of the machine but he is so stressed out right now at work (he's a banker...go figure he is stressed) that his mind isn't shutting down. As bad as this sounds I really hope it is that and not this alien now sleeping next to him. (I really don't think it's me to be honest). He told me he didn't care if I had hoses coming out of my ears he still loved me no matter what and better a hose than death. (love him).

On the first night I brought my young kids (7, upstairs and showed them the mask and the machine, I put it on so they'd know what mommy was going to look like and not be scared if they came in during the night. My little man announced he was sleeping with me all summer because I could be his fan and keep him cool (the nasal exhaust)

Trying to maintain a sense of humour about all of this, trying not to push myself too much into expecting instant success, but really really looking forward to being me again.

[atomickitty3000]

Welcome! Sounds like you're really doing great!

I too have gone from not imagining how I could ever get used to sleeping with CPAP to not being able to imagine sleeping without it. It's definitely not always an easy road but it's very much worth the effort.

AtomicKitty (also from Canada)

[Babette]

Welcome to the forum!!!

If you might be interested, I'm running a free test drive for the Nasal Aire II mask. You can try the mask before buying it, and all it costs you is postage to send it on to the next person.

I've currently got a mask going the rounds in Canada, so if you're interested, PM me before it comes back across the border.

You can read more about it in the links below in my signature block.

Welcome!
Barbara

[Pineapple]

My 7 year old tells everyone I sleep with a cool elephant costume When he has a bad dream he moves the hose out of the way, and crawls into Mommy's arms as if the machine isn't there.

Your attitude is your main allay. Keep it up. If you find your having problems, speak up, you'll be hard pressed to find something no one else here has experienced.

[JoyD.]

WELCOME Froro -- we're so glad to have you in the cpaptalk community

You are one of the lucky ones who has already done a lot of homework by getting on CPAP / SA Forums and reading and reading . . . the payoff for all that is that you chose a great machine and a great mask (though masks are very individual). CONGRATULATIONS for that forethought!

You are also blessed to have a supportive family right off the bat. It's good that your hubby is giving you some space while you get adapted. I'm sure you understand that he needs to get his sleep too (only one zombie in the family allowed at a time )

I think you're ready to roll . . . stick around and you'll learn lots of new tricks.

Joy

[Froro]

Thank you for the warm welcome.

Yup reading and reading is what led me to the equipment I have (as well as personal comfort). The lady at the supplier was terrific as well in guiding me through the different capabilities of what I had it narrowed down to.

The one thing I can honestly say is I'm blown away by the lack of information I have received from the sleep lab, sleep specialist and the supplier to a degree. There seems to be a huge disconnect along the line (from diagnosis through to treatment). It's only because I need/crave information on anything I get thrown in life did I go online. (Believe me...my kids wanted to get involved in acting...I researched and researched before I agreed, and as a result they have a great agent (who understands that kids still need to be kids and yes...we will occasionally say no to an audition in lieu of a school play or a family event), they have a well educated mom who is now fluent in contracts, and also knows when not to sign them and won't let anyone take advantage of them in the industry on any level, no stars in this mom's eyes....secretly knowing their education will still come first, no ifs ands or buts, and I could leave the entire industry behind in a second if I think it interferes with our family) So, yeah...I'm a research freak.

That being said....a few things to note. The only reason I even knew to ask for a mask at my titration study that involved nasal pillows was because of forums online. It wasn't even brought up initially. It's like they expect everyone to say...oh okay, I have apnea, woohoo, I don't need to know anything about it and I'll just do exactly what you say and accept everything you give me. When I met with the sleep doctor, I got very little information from him about what it was all about (only by studying the script and looking online have I figured out most of it), The doctor didn't even tell me they are required to report my condition to the Ministry of Transportation (drivers license here). Only after speaking with my family doctor after reading about that online did I relax when he told me that I didn't have to worry, I was compliant and seeking treatment so I would not lose my license. Can you imagine...mom of 4 who needs to travel to downtown Toronto from the burbs everyday with kids not being able to drive, not even knowing that I might even lose my license at all???

Now...onto the actual machine and usage thereof. While they were great at the suppliers explaining how to clean it and change filters etc, at no time did they actually turn the machine on. What would be ideal (and this is not done in Ontario), have a nurse or a technician come to your home and actually fit you with the machine running!!! That first day I just sat in my room and wore it a little bit at a time (to avoid claustrophobia) but also to understand what all the different and new noises were. Was this a good noise or a bad one? If I do this what difference does it make to fit etc. While I woke up yesterday morning feeling fantastic I had zero clue whether I did it all properly. Was it placebo affect or did the machine do what it was supposed to do. Again, it was only by going on forums did I find out how to check the daily readings to see that in fact..yup, I had zero leak rate and an AHI of 1.9. Yay me.

Last night I KNEW I was having trouble with fitting it properly, I knew there were leaks, and I woke up all night trying to figure out how to get this thing to fit properly again. When I checked the readings this morning> Sure enough, leak rate of .08/L, AHI of 6, and it only registered 5 of my 8 hours of usage (not sure why that little blip...I'm going to call the supplier on that one). But I woke up and I knew something was wrong. We'll see what happens tonight.

Since the rain or whatever you guys call it is so unbelievably common it would have been nice to have been warned about that little one from the suppliers themselves. No one told me to ensure the machine was lower than my head. I dealt with it but it's no wonder I woke up that first night feeling like I was drowning with water starting to bubble up my nose for goodness sake. I just turned down the humidifier, cleared the hose and put it back on but I can see why compliance is so low.

They make this entire process so alien, without proper and real info going out to patients who I'm sure would love to have that upfront. For those with claustrophobia fears, and just general fears of Holy Canolli I stop breathing during the night yikes, they could make the process itself so much smoother and be reassuring as opposed to having us walk into the unknown with no knowledge. Thank goodness for the internet but there are still so many out there who don't know how to look online for these things and this info. (I've been on the internet now almost 20 years and am well versed). I know my parents and even many in my own age group who look at the internet for email and that's about it. The vastness of the info on it is overwhelming to them. I use it for research daily so it's no biggie for me, but I know of many who still fear / mistrust information from the internet (obviously there is alot of garbage on the net and some just don't understand how to filter it).

I'm a big advocate of controlling your own destiny, being involved in your own healthcare and being your own best advocate in health issues and education. I think once I'm actually settled into this whole thing I'm going to start up some kind of involvement whether on the political side (government provides our healthcare), or on the medical side. If those services are there in our province, I certainly haven't been able to find them so they must be very very well hidden.

[Babette]

Yup, yup, yup!!! Most of us have have that similar experience. I think alot of folks join here out of sheer frustration and the desire to try to help themselves.

At least you got a good mask - that Swift LT is getting high marks on this forum. I really went through hell for the first first 6 weeks - I got two different masks from the DME before I gave up on them and just started buying and swapping them online here on the forum.

Best of luck!!!!
Barbara

[JoyD.]

I'm a big advocate of controlling your own destiny, being involved in your own healthcare and being your own best advocate in health issues and education. I think once I'm actually settled into this whole thing I'm going to start up some kind of involvement whether on the political side (government provides our healthcare), or on the medical side.

YOU GO, GIRL!!!

Yep, we were all amazed at the "lack of's" too . . . Incredible, isn't it?!

Joy

[Froro]

I find it appauling!! Once I'm feeling myself again I think I'm going to make this my new pet project. I'll probably be on here alot trying to find some statistics and such as well as asking for personal feedback on specific issues.

I'm about to become the provincial legistlatures worst nightmare.... I was talking to my dad about all of this as back in the day, he actually set up the provincial home care programs....he was disgusted with the lack of info and proper support. I'm going to tap that resource and his contacts to do this right. (why not right?)

First things first though. I need to get myself back on track and go through the experience fully before I can really go further with it. I am making notes though.

[Babette]

Froro girl, you're my new best friend!!!

GOOD ON YOU!!!!!

I've made it my mission in life to do everything I can to help fellow cpapers, both here on the forum, and when I meet folks live. It gives me a warm fuzzy feeling at night knowing I've helped folks. If I can share what I've learned, I feel I've done my part for the world.

And for those I didn't help - WELL GOSH DARN IT, I TRIED! And maybe they will find a better solution than I offered down the line!

Hugs,
Barbara

[billybee]

Hi from another newbie - with exactly the same experiences! Without sources like this forum, we'd all be wandering around like a herd of sheep, under the haughty gaze of the oh so arrogant medical profession.

[ChrisC]

Froro, glad to have you on board. I'm a newbie too, but I've been on here for months researching every aspect of my treatment before I even went in to get my equipment. As far as sleep labs go.. I think some are good and some are bad. I'm not too far from you (I'm in Gananoque, just outside of Kingston) and went to Kingston for everything. The sleep lab was great about showing me a bunch of different style nasal masks and nasal pillows: I got to try the Swift LT (and LOVE it) during my titration study. Again, with the DME I chose (Medigas in Kingston), I was fitted for the mask and sat in a chair with the machine running while they demonstrated ramping and what my pressure would feel like.

I was worried about losing my drivers license too. In fact, "Will I lose my license?" was the first thing I ever posted here!! I've slept awful for years, but always chalked it up to working shift-work at a casino.. I left the casino industry and work 'normal' hours now, and was still feeling like crap. My wife was forever poking and proding me at night, and I was afraid to sleep over at other people's homes, because of my loud snoring.

Ironically, what really pushed me towards looking into whether I have sleep apnea is the information I found while applying for ADP CPAP coverage AS a Home Healthcare vendor. We've since decided not to apply for ADP funding for respiratory devices, but I ended up getting a sleep study referral because of what I found out!!

[Babette]

BTW, Chris, I love your avatar!!!!

Nothing more appropriate here than a couple of hosers, eh?

Keep your Tuque dry!
B.

[ChrisC]

Ahh.. Babs. I'm so glad someone was clever enough to catch on to my subtle twisted sense of humour.

[Babette]

Hey, I've never understood WHY Bob & Doug were a couple of hosers. I mean, what does "hoser" mean to the non-cpap Canadian population?

LOL,
B.