Newly Diagnosed. Not Happy. Need Equipment Advice.

[kims]

Hi-

I went for a sleep study at the recommendation of my doctor. I was interested in having weight loss surgery and did not qualify based on my bmi of 35. When I mentioned having sleep issues, he recommended a sleep study because a diagnosis of sleep apnea and a bmi of 35 would qualify me for weight loss surgery. So, yes, I do have sleep apena. My index was 17 but much higher during REM sleep. I consulted with a sleep doctor who indicated that even with weight loss surgery and dramatic weight loss, I would probably still suffer from sleep apnea because my airway opening is very small (she said it was one of the smallest she had every seen). I have always been a restless sleeper who has truble falling and staying asleep. The doctor said I have probably had this problem since childhood.

I was very resistant to the idea of being tied to a cpap and told her I would opt for OTC sleep meds nd the restless nights than willingly agree to a cpap. She eventually changed my mind by convincing me that I was a prime candidate for a stroke or heart attack while I sleep because my oxygen saturation levels were very low (72% for periods of over 10 minutes and 92% overall). So here I am, stuck with getting a cpap.

I would like some advice on equipment. I cannot and will not do the head gear. I have reallly senistive skin and get rashes easily, so I don't want something that will be covering the skin on my face for hours at a time. I also tend to breath through my mouth and I hate the idea of a chin strap. I saw a website for the CPAP Pro mask which has no headgear. It is held in place by a mothpiece that you bite on. It says the tubing is flexible and can be placed in any position. I am a side sleeper and this looks like it might be more comfortable than the head gear.

I also want a small, quiet unit with a humidifier. We travel internationally at least once a year so this horrid thing will have to go with me. Any suggestions on a unit?

Also, what is the deal with being able to choose your own equipment? I am seeing the Sleep Center at Georgetown University Hospital and they said they have a special person who orders the equipment. Do insurance companies usually have only certain types of equipment that they authorize, is it by price? My insurance is thru the Federal Government (Carew First Blue Choice Federal Employees - Open Access).

I am pretty much sure I am going to hate this whole process and go into it kicking and screaming. I had cancer last year and was on TPN feeding for 2 months through a PICC line at night. I loathed being tied to the feeding machine and hated waking up tangled in the tubing. The night I did the sleep study was horrible being hooked up to all of the leads. It makes me sick to my stomach to think that I am in for similar issues with the CPAP and that it will likely be for the rest of my life. If it were not for being scared of having a stroke or heart attack, I would just put up with the sleepless nights.

[greatunclebill]

the most important favor you can do yourself is to have an attitude adjustment. with your can't and don't and won't attitude this will likely not end well no matter what mask and machine you get. yes, you will have a cpap til death do you part, so get over it and start thinking positive and that date will go further in the future.

[nanwilson]

With an attitude like yours you will not use the machine...so why go through with it. Like the doctor said ..heart attack and stroke are on your list of medical emergencies.
I would seriously suggest that you do alot of reading of this forum and change your attitude to acceptance instead of flat out rejection. This therapy works, and it will work for you too. The face masks are a part of the gear, but you can minimize the facial area that it touches by getting a smaller type mask ..ie: pillows mask and use padacheeks.coms comfort gear with the mask. Karen at padacheeks is a patient and member here and makes comfortable coverups and liners to enable us to use our masks with less heartbreak.
I'm am positive that none of us love the fact that we have to use a machine to sleep....but we do love the fact that it is enabling us to not end up in a nursing home or worse yet ...dead. Please do read and read some more..educate yourself on this therapy and if after that you have questions do not hesitate to ask.
Cheers and good luck
Nan

[Slartybartfast]

I second my Great Uncle's remarks. The people who fail at this are the ones who express precisely the sentiments you did. What you've been diagnosed with requires treatment. Just like insulin to a diabetic or dialysis to a kidney patient. Treating the condition is not optional, unless you don't want to live long.

Think of it as a very simple non-invasive way of tacking an additional 5-10 years of quality time onto your life expectancy. Check out a nursing home sometime and look at what's in store for you after you have a stroke. The oxygen desaturations your sleep study uncovered also put you at greater risk for Alzheimer's and that's no fun either.

A mind is a terrible thing to lose.

[Bons]

Your cpap is your friend, and not your enemy. It can and will save your life if you use it. Pout for awhile, as that is a natural thing to do - having to use a machine for life sucks big time. But permanent damage from a stroke or heart attack sucks worse. Get over the anger, and thank the good Lord there is something that will help you LIVE with sleep apnea - the machine is not "horrid", but a life saver. For most of us, our cpaps/bipaps/asv's are the first think we pack when getting ready to travel. Trust us - with the right attitude, after a bit, you won't even want to sleep without it. It makes that big a difference in our lives.

As far as masks go, I don't think anyone who has tried the strapless mask has liked it (do a search on this site and you will find some comments about it, I'm pretty sure). There are ways to protect your skin, such as purchasing cloth covers for the straps and mask liners from padacheeks.

The hospital techs SHOULD be helpful in purchasing your machine and supplies. They will let you try on different styles of masks to help you find one you can live with (pun intended). Insurance companies allow you to purchase any machine that is prescribed (cpap, autopap, bipap, asv) - the specific manufacturer and model should be up to you (our local DME's don't carry ResMed machines, so we bought my husband's machine through someone on this site; I stayed with the DME since my insurance company requires a DME for reimbursement and my machine was over $5K). The suppliers get reimbursed a set amount due to diagnosis code, so the supplier receives the same amount of money if they sell you an expensive machine as they would for a cheaper one - so with some suppliers you have to be careful to insist on a better machine).

[mindy60]

I, too, am new to CPAP and just hate the idea of using the machine for so many reasons, so I understand where you are coming from. I was dx in 2009, tried the machine, then quit using it until now. I am willing to try again. I NEED to try again. I just hate being afraid of going to sleep at night. It didn't dawn on me until a few days ago this problem might be because of OSA. A friend of mine had a stroke a few years ago that left him completely paralyzed on his right side! I admire his courage and what he's had to overcome. I'd also hate to be in his position; how frightening that would be to end up like that!

[archangle]

After you have your stroke or heart attack, they'll put the CPAP mask on you anyway in the hospital or nursing home, so you might as well do it now.

Or you'll do it on your own when you get sick enough. Assuming you don't just up and die first. Your health will probably have degraded quite a bit by that time, and you don't always completely undo the damage cause by years of untreated apnea.

You might try losing a lot of weight, but start CPAP first and use the thought of getting rid of the mask as incentive to lose weight.

Do not promise yourself you'll lose weight as an excuse to not do CPAP. Most people don't succeed at losing weight, and CPAP may help you lose weight because apnea tends to cause weight gain. Also, there are thin apneacs and weight loss doesn't always cure you.

Be sure to read up on what kind of CPAP machine to get. You want a fully data capable machine. Do NOT get one of the travel machines. They don't give you or your doctor the information you need to manage your therapy. They're not that much smaller than a good machines. Check the links in my signature line, especially Janknitz's blog to avoid getting screwed by the CPAP salesman at the CPAP supplier.

Apnea is every bit as serious as diabetes. You may not like the needle, but it's better than not treating diabetes.

You need to decide you're going to make it work and quit looking for excuses.

[kims]

OK so what I really needed from everyone was advice and not a lecture about why I need to be happy and accepting about going into this. I realize what the health consequences are and that is the only reason I'm doing this. But as far as I am concerned, you can all keep your preachy attitudes to yourself. What I was looking for was advice on a specific type of mask and advice on machines and not one person answered my questions. If all you want to do is preach at people, then I'll find another forum where people are more helpful. I am a colon cancer survivor and most of the people that come to the forum I am on are scared and angy about their predicament. We make it a point not to preach at them. I think you all could take a lesson on that.

[kaiasgram]

OK so what I really needed from everyone was advice and not a lecture about why I need to be happy and accepting about going into this. I realize what the health consequences are and that is the only reason I'm doing this. But as far as I am concerned, you can all keep your preachy attitudes to yourself. What I was looking for was advice on a specific type of mask and advice on machines and not one person answered my questions. If all you want to do is preach at people, then I'll find another forum where people are more helpful. I am a colon cancer survivor and most of the people that come to the forum I am on are scared and angy about their predicament. We make it a point not to preach at them. I think you all could take a lesson on that.

Hi kims, don't leave yet, please check your private messages.

[BlackSpinner]

OK so what I really needed from everyone was advice and not a lecture about why I need to be happy and accepting about going into this. I realize what the health consequences are and that is the only reason I'm doing this. But as far as I am concerned, you can all keep your preachy attitudes to yourself. What I was looking for was advice on a specific type of mask and advice on machines and not one person answered my questions. If all you want to do is preach at people, then I'll find another forum where people are more helpful. I am a colon cancer survivor and most of the people that come to the forum I am on are scared and angy about their predicament. We make it a point not to preach at them. I think you all could take a lesson on that.

Attitude change is the most important part of the advice given. This is a life change thing, it is not temporary. Go in hating and you will fail. We all here know that, have faced that.

Read the wiki (light bulb ) at the top of the page.

Using a cpap machine and what ever masks that work with you is probably the simplest and most effective therapy you have met. It has very few minor side effects. Compared to cancer this will be a breeze. Most people start losing weight immediately.


Read this :What you need to know before you meet your DME: http://tinyurl.com/2arffqx

[ughwhatname]

Sorry you feel attacked. Just an observation about your opening post. You spent more than half the time talking about your feelings about your diagnosis and not about equipment, so that might be why people commented on that aspect of your post. I don't have any advice since I'm a newbie too.

OK so what I really needed from everyone was advice and not a lecture about why I need to be happy and accepting about going into this. I realize what the health consequences are and that is the only reason I'm doing this. But as far as I am concerned, you can all keep your preachy attitudes to yourself. What I was looking for was advice on a specific type of mask and advice on machines and not one person answered my questions. If all you want to do is preach at people, then I'll find another forum where people are more helpful. I am a colon cancer survivor and most of the people that come to the forum I am on are scared and angy about their predicament. We make it a point not to preach at them. I think you all could take a lesson on that.

[jencat824]

OK Kims, I have experimented with many, many, many masks. I was diagnosed and have been compliant with CPAP since 2000 (I had 9 sleep studies due to the severity of my sleep apnea and resulting narcolepsy). My suggestion of a masks that may meet your needs are the F&P Piliaro (small mask, no headgear pers se, just a small band around your head) or the SleepWeaver Elan (does have headgear, but has NO PLASTIC!). Look these up on CPAP.com think about giving them a try.

I didn't like the idea of CPAP at the time either, but am so used to it now that I use a home generator in case the power is out. (My hubby bought the generator for the massive fish tanks he has, I like it becuase it allows me to use CPAP without having to buy a seperate battery). It goes with me on vacation - easy to travel with, just tell airlines it is a medical device and you can carry it on plane, does not count as your 1 carryon, it is a additional carryon at no charge. Hint: in extra area around your machine, pack additional items, like makeup, socks, bras, other unmentionables, any small items, this saves you space and in my case reduces having any 'checked' luggage. -THERE IS A PLUS!

Also, listen to others here regarding various masks, if you try one and it doesn't work, then tell your Dr that one didn't work & try another. Many masks on CPAP.com come with 'return insurance' I'm not sure exactly the process, just read on that site, I think you pay a small price to be able to return it if does not work for you. Many insurances and Drs will support you returning a mask that doesn't work for you. I know SleepWeaver will refund 100% if you don't like their product.

Another tip - I learned from a user here that if you have longish or long hair, use a pony tail holder to keep your hair from being a mess the following am. How I did it was put on pony tail holder, than put on mask, then pull hair thru back of headgear or in my case the strap, remove pony tail holder & next morning, no messy hair!

Give this board a change - these folks can help you. Also listen to them about what machine works best with best available software. I bought my newest machine before I found this board. After all these years I found I could have been better at participating in my own health by getting my own data from machine using software these folks know about. Problem in my case, I bought a machine that is difficult to get software for, so I'm having trouble getting the software. I am going to have to buy expense software if I cannot get mine to work (still trying).

I hope you will find the answers you need here. Let me know if I can be of any helpl
Jen

[wiguy]

I am a new CPAP user. I knew the morning after my study when the sleep tech was walking me out.. she asked.. if you need a CPAP would you use it?!. I know right then I was gonna need it. I got a call 3 days later from my primary saying I indeed had severe sleep apnea. I was not suprised and I was ready and braced for impact. I had a bad attitude. I researched it everyday for 2 weeks before I decided to get my setup. I looked at masks, options, machines, noise levels... you name it! I also looked into alternative fixes like removing some of the soft issue, or installing them implants that firm things up. While I am 5'9 and 206lbs. I am clinically obese but I am healthy. LOL I am overweight though...

I went to the homecare place.. and she gto my machine out and we went thru it very thoroughly and she showed me how it worked and how incredibly quiet it would be. I started to feel better. Then to the mask. She pulled out a nose mask.. I was like ugh! Or we got the nasal pillows too.. I was like I want them!!! She helped me fit my mask and all that stuff... Very nice.

My first night was.... interesting... I ahve been on it a few weeks now and I can tell when I have a bad night.. my following day SUCKS!!!! ALL DAY!!!! CPAP has made a believer out of me.

As far as equipment, I am sure you will get something similar to mine. You will either get the ResMed s9 set or PR RemStar like I have. They are both nice units...both have heated humidifiers and offer data so you can check your own sleep. You can also get heated tubes for them for that extra bit of moisture. I hardly hear my machine anymore, I have grown accustom to it. It does not go on till I am ready to sleep, and it comes off as soon as I wake up! I preheat the water when i get in bed.. its a neat function on my humidifier. I also use the resmed swift FX nasal pillows.. i love love love them... I will be trying the bella loops in the near future to minimize the headgear..

I hope I helped. Just be positive. It will help immensely. I am only 30... I didnt think young people like me got it.. but they do... and I am sleeping anyways.. I have nobody to impress. Plus my wife loves the concept of no snoring! LOL

[lazer]

kims, People here care and can be rather blunt so that is also why you may have sensed some brashness and pushiness in the replies. I can guarantee you that if you stick around and mend in with the folks here, you will be gaining valuable feedback and advise on how to make xpap work for you. Best of luck. One step at a time...

[Janknitz]

Hold on everybody and back off a little! I could have written exactly what Kim wrote myself (in fact I did, on another forum, and the swift kick in the pants I got was good for me!). I thought there was no way I was EVER going to use a CPAP. The only saving grace in my case was that my apnea was much more severe, I have a loving husband and two children at home, so I wasn't going to risk them needing to change MY diapers.

I went into it kicking and screaming, too. But I perservered for THEM, and I think Kims can persevere, too. Kims, attitude is all, and what you have to decide is EVEN if you hate it with every fiber of your being, you MUST use it, and figure out a way to make it work for you. You sound like a really smart person, one who isn't going to let this lick you. Master it and make it your own.

As to your concerns, exept for the oral device you describe, all masks have headgear, but some headgear is less obtrusive than others--a nasal pillow system like the Swift FX is probably the least obtrusive of all. You hopefully will find a good, and patient DME who can work with you to find a mask that will work for you. CPAP Pro sounds good, but it may not prove to be as comfortable as you think--definitely worth a try, though. And as already said, Padacheek makes a variety of liners and strap covers for masks and will work with you to come up with solutions you may need so your skin isn't irritated. I have very sensitive and reactive skin, but the CPAP stuff has not bothered me in the least. I use a Padacheek liner for my full face mask, and it's like snuggling my face in a very soft blanket--actually quite comforting and cuest me to go to sleep.

Please see the links to my blog starting with "What you need to know BEFORE you meet your DME" so you will understand how the DME process works. You do not need to use the DME your doctor recommends (and there may be reasons NOT to), and you can ask for a specific prescription to get what YOU want, not get stuck with what the DME makes the most money on. You can do research on various machines (I have a chart on my blog, Roby Sue has good info on her blog, and CPAP.com has pictures and reviews of all the machines with lists of their features) to help you decide what you want. Taking charge of this process helps you feel less like a victim, and more like a master of this process.

All of the current models of machines are smallish, lightweight, quiet, and relatively easy to travel with. They are exempted from counting as carryon luggage. One more thing to carry, but that's life.

I think the hardes part of this process is the loss of control over a big aspect of your life, but you can take that control back and feel positive about what you are doing for your body. Better, more restful sleep may help you lose weight, and give you more energy that you probably don't even realize is missing right now.

Hang in there, it's a steep learning curve, but you CAN do it. This is way easier than gastric bypass with its surgical risk and pain and lifelong side effects. I promise.