Advertisement
HI everyone. I have been on Tribe for a while and on other CPAP forums for a short time but decided to see if there was a Sleep Apnea Trobe here so I could have a place to chat with folks who had the same kinds of things going on that I do. I am happy to have found you all here:)
I am Pam and I live in the SF east bay and was diagnosed with Sleep Apnea just in the past year. In retrospect I must have had it for years and years. I slept through Phantom of the Opera twice...snoring away to the dismay of the people in the seats next to me in the theater. When I had a motor vehicle accident on my way to work at a hospital, I ended up having surgery there that day. I woke up after surgery complaining of pain in my jaw instead of my surgical site. Turns out the anesthesiologist spent about an hour as I dozed off and on in the recovery room trying to keep me from obstructing so I would get enough oxygen.
I went to my doctor complaining of a headache that had lasted for several months without any relief. Finally, I asked for a sleep study which showed moderate sleep apnea. A Holter monitor measured my heart rate as high as 180 at night and my blood pressure would rise too.
I got my CPAP machine..yay! I don't obstruct anymore when I wear it. I get a nice facial steam so that's always a plus! My headaches are less and my blood pressure is coming down.
I do have a couple of issues about it which I feel so petty complaining about since I am so grateful for it. But maybe all of you experienced ones can suggest some things?
#1 I work in SF proper three days a week and sleep there. I take BART and Muni and walk several blocks to get there. I already carry my clothes for the weekend and I can't really haul my CPAP into work too for the weekend. Does insurance pay for a second one? If not, is it possible just to purchase a second one from my DME provider?
#2 The velcro on the headband pops open and the little ball and socket thingies go flying. It is almost impossible to find those in the middle of the night. Is there a better system?
#3 I learned all about rainout and have done all I can. I have the machine very low to the ground. I have bought the hose insulation. I bought an extra hose to give the first one time to dry out. I have turned the humidifier down. I still get rainout sometimes. I have heard of the Aussie hoses. Do any of you use them, like them?
Thanks in advance and good to see everyone here
Pam
I am Pam and I live in the SF east bay and was diagnosed with Sleep Apnea just in the past year. In retrospect I must have had it for years and years. I slept through Phantom of the Opera twice...snoring away to the dismay of the people in the seats next to me in the theater. When I had a motor vehicle accident on my way to work at a hospital, I ended up having surgery there that day. I woke up after surgery complaining of pain in my jaw instead of my surgical site. Turns out the anesthesiologist spent about an hour as I dozed off and on in the recovery room trying to keep me from obstructing so I would get enough oxygen.
I went to my doctor complaining of a headache that had lasted for several months without any relief. Finally, I asked for a sleep study which showed moderate sleep apnea. A Holter monitor measured my heart rate as high as 180 at night and my blood pressure would rise too.
I got my CPAP machine..yay! I don't obstruct anymore when I wear it. I get a nice facial steam so that's always a plus! My headaches are less and my blood pressure is coming down.
I do have a couple of issues about it which I feel so petty complaining about since I am so grateful for it. But maybe all of you experienced ones can suggest some things?
#1 I work in SF proper three days a week and sleep there. I take BART and Muni and walk several blocks to get there. I already carry my clothes for the weekend and I can't really haul my CPAP into work too for the weekend. Does insurance pay for a second one? If not, is it possible just to purchase a second one from my DME provider?
#2 The velcro on the headband pops open and the little ball and socket thingies go flying. It is almost impossible to find those in the middle of the night. Is there a better system?
#3 I learned all about rainout and have done all I can. I have the machine very low to the ground. I have bought the hose insulation. I bought an extra hose to give the first one time to dry out. I have turned the humidifier down. I still get rainout sometimes. I have heard of the Aussie hoses. Do any of you use them, like them?
Thanks in advance and good to see everyone here
Pam
posted by:
|
SF Bay Area
|
Advertisement
Advertisement
-
Re: Hello and my story
Mon, May 21, 2007 - 4:07 PMWelcome, Pam!!!!!! We are a rather small gathering but an open and supportive one. We hope you will feel welcome here.
In regards to your questions...speaking only from my own experiences:
#1 - Not sure about insurance. However, I think an Rx from your ENT will likely enable you to purchase another. Personally, I do not usually have to haul my BiPap around but the infrequent times i have to use public transportation, I stuff it in a larger suitcase with my other clothes/items and I stick the mask into a carry-on or personal bag so as to avoid it getting crushed by the contents of my luggage.
#2 - Not sure of a better system, per se - but other masks have different methods of retention. However, many if not all seem to employ velcro. I think I understand the ball/socekt system. On mine, I have a clip system that really does not come loose. However, the flexibility of a ball/socket connector sounds very interesting. What type of mask do you use? I use a Resmed full face mask. I am a mouth breather.
#3 - Can't really provide much on rainout. In SoCal, it is rather dry and I don't use a humidifier. Hopefully others here can chime in with some good info.
Once again, Pam...Welcome!
MC -
-
Re: Hello and my story
Mon, May 21, 2007 - 4:29 PMHey Pam,
A special welcome from a fellow East Bay-er!
WTF is "rainout"???? I might have it and not know!!!
My BiPAP came with a really nice carrying case...I'm sorry that y'all don't have one, but mine is really easy to travel with. It looks like an overnight bag.
Also, Pam, beware of the DME in El Cerrito, I think they are called either Rest E-Z or Sleep E-Z. They are total scammers and care more about your insurance reimbursement than they do your care (IMHO).
Best to all,
D. -
-
Re: Hello and my story
Mon, May 21, 2007 - 6:46 PMThanks so much Darla and MC
I already am feeling at home here. :)
I do have a carrying case. I should have been more clear. I apologize for that..It's just I haul so much into the city already for my three days there that hauling my CPAP case on top of it is just too much. I suppose I could pack like I am going away for a long trip each weekend and haul a pull along instead of the messenger bag I usually take.
As for rain out...here's the scoop..love the nun pic by the way Darla..
Rain out is when you get condensation in your hose and mask from the humidifier. When the water cools on it's way to your nose and condenses out..then little droplets fall onto your face ...or even you start feeling a gurgling in the hose and have to detach the hose and empty the water out half-way through the night. It happens much more often and much worse in areas that get colder than here. But, it happens enough here that it wakes me at night. Feels like someone is dropping little bits of water on your face.
The Aussie hose is heated all the way up so it keeps the water in steam form so I hear.
The DME that gave me my unit was Aspira healthcare ....they weren't the most professional org either. But, the co-pay was refunded to me after a couple of months. My CPAP only ended up costing me $5. Can't beat the price!
Thanks for the warning about El Cerrito, Darla. Have you ever gone to the face to face apnea groups in town? I was thinking of checking the one out on Fremont sometime, if I can stay awake lol
Thanks much MC and Darla again
Pam -
-
Re: Hello and my story
Tue, May 22, 2007 - 4:13 AMWelcome Boot...
wow that Aussie hose..sounds like something I could use...
I am relatively new too...
and still cannot wear it all night..every night...
I seem to rip it off..around 4 am..
my cpap came with a carrying bag too...though I haven't traveled with it yet
could you get a luggage bag with wheels..
that may help you having to lugg it around..
cause...I KNOW its not light..especially when you have tons of other stuff to carry
welcome..
this is a great supportive tribe! -
-
Re: Hello and my story
Tue, May 22, 2007 - 1:25 PMThanks Heron
Maybe I will get a pull along bag. I have so much now that I am starting to look like one of the homeless people I care for haha.
I realized I didn't answer MC's question about which mask I wear. It's a Respironics Comfort Gel Mask. It has these little ball and socket connectors which make it easy to snap on and off but they also can get lost pretty easily too.
comfortgel.respironics.com/
Here's a site I found for the Aussie hose when I googled it..as I said I haven't tried it yet so I can't say how it works. Other folks on other forums have talked about it so I may try it this winter.
www.sleepzone.com.au/showitems.asp
My son came home last night and saw I had put a movie in the DVD player and asked " Oh so you decided to take a nap?".
I still fall asleep soon after sitting still very long. Even now that I sleep better at night. Do you all still do that? Or have you been cured of that?
Thanks to all of you for making me feel so welcome
Pam -
-
Re: Hello and my story
Tue, May 22, 2007 - 6:01 PMI seem to be better ..during the day...
not so drowsey..but..
the older I get the earlier..I go to sleep...
and if the movie is boring...and I am laying down...gooooooooooodnight..Irene!
andddddddddddd..wow..that hose doesn't come cheaply..
saved it for later reference..
one thing I did...which helped alot..cause my room is so cold in the winter is..
heat the water before I put it in my heater..anddddddddddddddddd..cover the water area with a teeshirt..it seems to hold the heat in there better..and I did put a cover in my hose..
I still get a lil mist sometimes..coming out..But I rather like it..doesn't bother me at all
anddddddddd..boots..I have a hard time carrying anything really..my body is not strong enough..sooooooo..wheels are my favorite friend!
besides the toilet..its the best invention..ever!
lol -
-
Re: Hello and my story
Wed, May 23, 2007 - 9:35 AMRainout. Huh, who knew? I insisted that I did not have a heater with my unit, even though I do have a humidifier/water thingey. For some reason, breathing hot air always makes me feel like I am going to have a panic attack or something, even though I am not prone to them (thank God there's something I don't have!), so I wouldn't even consider it. I have been happy with my regular, no heat BiPAP, although I think I might need my settings adjusted - I haven't seen my doc in waaaaay too long.
There are times, still, that I have an awful time getting up in the morning. You guys, too? I am going to have to bring in a note from the doc (which I resent - the note not the doc) because I am frequently late to work (though I always make up my time, my boss is just not very compassionate or understanding - and I have had a grand total of 1 sick day in a year...). Anyhow, do you have trouble waking in the morning, even with your CPAP or BiPAP?
Thanks.
SO glad for each and every one of you.
-
-
-
-
-
-
-
Re: Hello and my story
Thu, May 24, 2007 - 12:03 AMRain out! Now I know what that is called!! I've only had it happen about 3 times with my CPAP. I live in Arizona where the humidity level in the air is much lower than other parts of the country. However, from July through September I have to set the heated humidifer setting lower because there is more humidity in our air due to the "monsoon" season. However, it was when I had taken my CPAP with me on a trip to our son's house in OH that I experienced rain out. I freaked out in the middle of the night when water droplets started falling on my face under my mask and I heard "gurgling" sounds in the hose. I had to disconnect myself from my CPAP, empty out my hose of the water sloshing in it, and then lower substantially the humidification level. It never dawned on me that since OH has much more humidity in the air I would need much less "assistance" from my humidifier.
Welcome to our little corner of the world! I can't even begin to tell you how this group has helped me learn about and deal with my diagnosis of Sleep Apnea 11 months ago.
Love,
Leah -
-
Re: Hello and my story
Thu, May 24, 2007 - 9:34 AMOMG - has it already (and only) been 11 months? It seems like you have always been here!!! You're such a quick learner. Already a poster child for Pete's sake. -
-
Re: Hello and my story
Thu, May 24, 2007 - 5:21 PMYep! Just over 11 months! 341 days to be exact! If it weren't for the support and assistance of this tribe I would have literally been on my own. I must admit, my doctor is thorough and caring and so is the home health team who works with him. My only downfall: my doctor is retiring in 3 weeks and I need a new doctor!! YIKES!
I think only you guys believe I'm a "poster child"! ((blush))
Love,
Leah -
-
Re: Hello and my story
Thu, May 24, 2007 - 6:02 PMLeah,
You make it easy to love you! Just look at that picture - all cute and sweet. Look at mine - nun with a gun - what does THAT tell you?!!!
Well, dear heart, you are OUR poster child, right gang? -
-
Re: Hello and my story
Fri, May 25, 2007 - 9:44 AMyeppppppppppppppppppppppp
Darla I think about you with that gun..and how that resonates in your soul...hehehhe
and yeppppppp...Leah..is our poster woman..for cpap
and MC..is..our fearless leader..!
I'm just the fly over girl!
hehehehe -
-
Re: Hello and my story
Fri, May 25, 2007 - 3:22 PMhahha I just love you all already...and I am picturing what a poster would look like with us on it.
I always think I look like a big old mosquito when I wear my CPAP mask.
Yay for well-rested bugs!!!
As for Darla's question, I feel very well rested in the mornings. Maybe you need a new sleep test if its' been a long time? Some folks get their settings adjusted I know. I got up at 4am today to come to work so I am losing steam about now but I swear I was rested when I got up lol.
During the day I still poop out though. I wonder if that will ever go away. I wonder if our insurance will pay for a sleep study with the CPAP on if we have trouble still down the road. My original one was a split study but I swear I don't think I slept more than 30 minutes the whole night. every time I dozed off she woke me back up to do this or that.
As for the question about being out about wearing a CPAP... I admit that I don't tell many people. I work in the medical field and people just look disgusted like if I just would lose my extra pounds I wouldn't need it... well I need it..get over it...shoot.
I did tell a Physcian's Assistant I work with today. We had a very candid conversation about it. He's not overweight at all. He admitted that he snores, wakes throughout the night. Has trouble staying awake during the day. Now he wants a CPAP. He is going to ask his doc for a sleep study. Maybe it does some good to stick our necks out.
Soooo I am in SF this weekend sans my CPAP..
I will be back home with it sunday night..sleeping soundly again
Pam
-
-
-
-
-
