CPAPtalk.com

cflame1 wrote:If you're going Bipap... try to get a Bipap Auto. Very nice machine. Lots of options that can be tweaked on it.

Looks like the respiratory therapist is recommending a Respironics BiPap Auto SV for me. If the insurance approves it, it will, indeed, have plenty of options on it!


-- Kiralynx

It aslo looks like the RT knows what's the proper treatment for complex sleep apnea (aka CSDB) - which is encouraging.

O.

ozij wrote: It aslo looks like the RT knows what's the proper treatment for complex sleep apnea (aka CSDB) - which is encouraging.

Highly encouraging. I've had some major health challenges this year. Diagnosed with endometrial cancer in late February, surgery (including total abdominal hysterectomy, plus removal of ovaries, Fallopian tubes, and some lymph nodes) and a panniculectomy in April. I was incredibly fortunate to have a top mark gynecologist, oncologist, and plastic surgeon for this.

Interestingly, the oncologist asked if I had sleep apnea. My answer at that time was, "Not to my knowledge."

Needless to say, I've sent her copies of my sleep studies.

I got the word of my sleep apnea diagnosis the same day as my first post surgery cancer labs came back -- NEGATIVE! So, I'm down to four years and eight months before I can be declared cancer free.

Too bad there isn't a time frame where you can be decalred apnea-free, and not need a machine!

What does the acronym CSDB stand for? I can figure from the context, but...?

-- Kiralynx

Complex Sleep Disordered Breathing.
O.

ozij wrote:Complex Sleep Disordered Breathing.

Obvious. Thank you.

"Space... the final frontier... it's in between my ears...."


-- Kiralynx

Kiralynx wrote: If things go well, I might have my machine as early as Wednesday this week.

Talking to myself again. Dratted Forum won't let me log in. Well, it's Thursday, and my machine hasn't arrived. This was courtesy, not of my doctor nor the respiratory therapist, but the doctor's office staff.

Last week, the therapist faxed her recommendations to the doctor. As of Monday, she had not received the detailed prescription. So, I walked over to the office after I finished my water therapy and asked them (politely) in person.

Tuesday, the therapist did not have it, so I walked over and asked the staff (politely) where it was. They were working on it, I was told.

Wednesday, I walked over after therapy, and asked for a copy of the prescription (seemed like a useful thing to have in my travel papers, in case something happens to my machine when we're OAA). I was told I couldn't have one. I blinked, and told the secretary that I had the original in my pocket, so why couldn't I have a copy of the revised prescription? I just couldn't, she said. And again (politely), I asked, "Why not?"

At which point, a copy of the signed sheet which was faxed back to the therapist was produced.

Later that afternoon, the therapist called me to say that the machine and my mask have been ordered, so now we're at the mercy of the transportation companies.

Now the questions begin. I think getting the machine is the least of my worries.

For one thing, I have to figure out where I'm going to put it, since the night stand has two reading lamps, the heater fan, the telephone, my evening meds, two books (minimum) and my tomato juice. There IS no room for a CPAP.

Another thing to figure out is the pros and cons of a hose cover -- I live in a very humid climate, yet a humidifier is a must. This argues a high probability of rain out.

Then, of course, there's the question of a card reader and software -- insurance apparently balked at that, so I'll have to get it AND set it up. Probably on the lap top, since the front USB ports on my computer aren't working well, and in any case, it will be convenient to be able to carry my records with me when traveling. This is rather expensive, so my question is, how essential is this in the early days of therapy?

Has anyone here used a hose manager like Hose Buddy or the Hose Buddy Traveler? I see reviews on those on this site, but there don't seem to be any reviews on the Hozer Travel Hose Management System.

Likewise, has anyone acquired a battery back-up system for their machine? I remember reading a discussion on this somewhere in the Forum... I believe the item referenced was by Battery Geeks? Hurricane season is beginning to wind down, so I may have a little time before I have to get something like this. Or maybe I can ask Sandy Claws for it for Christmas.

Next, of course, is the ongoing research.

Has anyone come across any studies on the relationship between sleep apnea and nutrition. (Not obesity, but nutrients.) For instance, complex sleep apnea occurs in something like 15% of apnea patients. I haven't YET found anything on what these 15% may have in common, so my immediate interest is in something I can readily control, diet and nutrition.

What about studies on the relationship between severity of sleep apnea and obesity? Obesity can worsen apnea, but if the obesity is eliminated, is the apnea ever eliminated?

I'm sure I can think of numerous other questions. But this will do initially. <g>


-- Kiralynx

Hey Kiralynx1,
You have made a lot of progress! Not right away into treatment, but after a few weeks of sorting things out, I fabiricated an overhead hanger and a lower shelf in my night table for the machine.

I got right away, and am a big believer in the data and software. It really provides incentive to me. Hose cover, maybe you won't require one...I don't as yet and think many go w/ naked hoses.

Hose Buddy Traveler - I want one of these and heard good things about it. If I had known I might not have needed to fabricate my custom hanger....although it's pretty cool.

I think I will plan on having a marine deep cycle battery on hand for hurricanes.

Georgio

Georgio wrote: You have made a lot of progress! Not right away into treatment, but after a few weeks of sorting things out, I fabiricated an overhead hanger and a lower shelf in my night table for the machine.

Georgio, as I said -- I'm not looking forward to being a hose head, but although I'm not overtly tired, I have a bunch of other symptoms (like insulin resistance, which I've kept under control with exercise) and the obesity which may be solved by this. And the fact that the pain management doc says that the unremitting pain which IS screwing up my sleep is related to the apnea. Plus, it's kind of hard to argue with a pair of sleep studies that tell you that you have complex sleep apnea.

I already have the Superpole from Dynamic Living (with the trapeze, it was a godsend for getting in and out of bed after the surgery. I'm thinking of getting the Supertray to put my unit on, since I have the pole, and it's right there by my bed. I was just curious as to what other people were using. http://www.dynamic-living.com/page/supe ... ions/#tray

Georgio wrote: I got right away, and am a big believer in the data and software. It really provides incentive to me. Hose cover, maybe you won't require one...I don't as yet and think many go w/ naked hoses.

OK, <gulp> Sounds like I need to call tomorrow and order the card reader and the software. I like having records. However, I've kept my diet records for seven years in a spiral notebook, and the software that I bought to keep things overall cost me a whopping 20 bucks! My boss at work is being difficult about hours, so I haven't worked but about eight weeks this year, and $$$ are in short supply after the out-of-pocket expenses for the cancer surgery.

Guess I'm being cheap on shipping -- I was thinking that if I'm ordering several things, it would be less expesnive to get everything all at once than making a bunch of small orders and paying a bunch in S&H, especially for an inexpensive item like a hose cover.

Georgio wrote: Hose Buddy Traveler - I want one of these and heard good things about it. If I had known I might not have needed to fabricate my custom hanger....although it's pretty cool.

Yes, I'm trying to decide which one of the hose managers would work the best. I had a real problem during the titration with the hose in the way. Well, the wires were in the way, too, but that's another matter.

Georgio wrote: I think I will plan on having a marine deep cycle battery on hand for hurricanes.

Only problem with that is that it could be dicey to travel with, and a battery back-up is something I want for traveling.


-- Kiralynx

Place the machine/humidfer on the floor maybe under the bed. Having it there will decrease the sounds it may make and prevent it from being recked if it falls on the floor if the hose pulls on it. Plus water beads from the humidifer have less chance to travel upward.
Get at least a 8 foot hose if you think you need a hose hanger.

For one thing, I have to figure out where I'm going to put it, since the night stand has two reading lamps, the heater fan, the telephone, my evening meds, two books (minimum) and my tomato juice. There IS no room for a CPAP.

I swithced to a night lamp hanging from the wall, and a cabinet with drawere instead of a night stand. I keep my cpap in the bottom drawer, pull the drawer out at night, push it back in during the day.

What about studies on the relationship between severity of sleep apnea and obesity? Obesity can worsen apnea, but if the obesity is eliminated, is the apnea ever eliminated?

There is a type breathing distrubance called "obesity hypoventilation" - start out with this paper [url=ttp://www.amjmed.com/article/PIIS0002934305003372/fulltext]The obesity hypoventilation syndrome[/url]

http://www.amjmed.com/article/PIIS00029 ... xt#section

O.

I swithced to a night lamp hanging from the wall, and a cabinet with drawere instead of a night stand. I keep my cpap in the bottom drawer, pull the drawer out at night, push it back in during the day.

OK, my nightstand actually does have drawers, so I could, potentially, clean out the bottom drawer and utilize it in this fashion. It would have two advantages over an additional table: it'll keep snoopy dachshund noses away from the equipment, AND it will keep the house cleaners who will be starting in a few weeks from mishandling the equipment.

There is a type breathing distrubance called "obesity hypoventilation" - start out with this paper [url=ttp://www.amjmed.com/article/PIIS0002934305003372/fulltext]The obesity hypoventilation syndrome[/url]

http://www.amjmed.com/article/PIIS00029 ... xt#section

Thank you. Very interesting. My oncologist, before my surgery, did ask if I had sleep apnea, and my answer at that time was, "Not to my knowledge." However, she ordered an arterial blood gases test as part of my admission work-up, and this article explains why she might have ordered it. Since she did not say anything about it (and she's very open about these things), I have to assume that this particular syndrome is not, in my case, applicable.


-- Kiralynx

jrt wrote:Place the machine/humidfer on the floor maybe under the bed. Having it there will decrease the sounds it may make and prevent it from being recked if it falls on the floor if the hose pulls on it. Plus water beads from the humidifer have less chance to travel upward. Get at least a 8 foot hose if you think you need a hose hanger.

Gerk! I agree that having it under the bed would decrease the sounds, and potentially decrease the possibility of it being dumped on the floor.

HOWEVER.... I have a pair of standard longhair dachshunds. Think Irish Setters on short legs. Only too darned smart for OUR good.

Placing it directly on the floor increases the probability of long fur rolling up to the intake. And I'm not just talking about the dachshunds! I have very long hair, and no matter how often the sweeper is run, it's everywhere! (My husband says I've destroyed more beater-bars for sweepers in 30 years than he'd have thought probable, as an engineer.)

It also increases the probability of dachshund/BiPap interaction -- and the BiPap would come out on the wrong end of that battle.

However, the suggestion of a longer hose if using a hose manager is a good one, and logical, when considering the added length needed to go "up and over," as it were.

Do you think a hose manager would also decrease the probability of rain out?


-- Kiralynx

Kiralynx wrote: If things go well, I might have my machine as early as Wednesday this week.

OK, talking to myself again. I've been informed that my Respironics BiPap Auto SV is in, and I meet with the respiratory therapist tomorrow to learn how to use it. (Oops, correction: I just had a call from the therapist, and the machine has NOT arrived yet, but it may be on tomorrow morning's shipment. ARRGH!)

Thanks to a little help from some friends, I have both the data card reader and the software. Now I have to decide which computer to install things on -- my desktop, which has the larger screen, and which will thus be easier to study graphs and charts on, or the laptop, which can travel with us so I can check the reports even when we're out and about. It's very annoying that the Encore Viewer does not allow one to export the data to a file so that two machines can be kept synched for frequent travelers. I guess CPAP people are supposed to be sticks-in-the-mud who never go anywhere.

I have received an eight foot hose from the DME, although I asked for a 10 foot one. (You should see my nightstand... the only safe place to put the machine requires the extra couple of feet, and the new Hozer hose manager probably wants another couple.) I set the Hozer up last night with the 8 foot hose, figuring I'd get the Dachshund Duo used to this thing hanging around their Missy before I hooked it up to the blower. They took it fairly calmly, so I'm keeping my fingers crossed. The mask, which will prevent their handing out puppy-kisses, is probably going to be the biggest problem.

The proof of the Hozer will be in the actual using of it, but I like the ease with which it sets up, and the fact that the hose is literally available anywhere in my sleeping range, without having to wake up to rearrange it. (I don't have a headboard to sling the hose over, and the Hozer is cheaper than a headboard!) It also disassembles quickly and easily. This will be a serious plus when traveling.

I also have to figure out what questions I need to ask the RT during the meeting. Any thoughts?