CPAP Machines: Do You Use One?

[kirbytradition7]

Since I was diagnosed in September 2004 with severe obstructive sleep apnea (due to my craniofacial disorder (Treacher Collins syndrome) which includes a very narrow airway), I have been on CPAP. My first machine, in 2004, was a car battery-sized Fisher-Paykel with on board humidifier and Respironics Comfort Classic nasal mask. It went with me a few weeks later when I moved from Fort Wayne, IN, to London, England, for the next 3 years. CPAP machines are designed to work dual voltage, so I was able to use it in England with only an adaptor plug for their huge outlets. After I moved back into the USA in 2007 to do my doctorate studies in San Francisco, I was followed up there in 2008 with another sleep study, and was prescribed a new machine with a higher pressure, this one was a ResMed C-series Tango. I still use this one. It is more compact, and travels more easily.

Since I moved to Calgary, Alberta, last year, I have found a sleep apnea specialist to follow up on me here. I use a new, more comfortable nasal mask (ResMed Swift FX Nano) which does not cause ulcers on my nose like the old one did (my skin is delicate). They told me I will need a new machine, and are recommending a ResMed S9 series auto CPAP machine. As I age, they advised me, sleep apnea progressively worsens. I have found that out myself. With Treacher Collins syndrome, the obstructive respiratory complications worsen with age, I read in the craniofacial literature.

I still have my first machine (the 2004 Fisher-Paykel one) in my medical artifacts collection, and my current one will join it when I get my new one.

Do you use a CPAP? Share which models you have used to now.

 

[electrolux137]

Raising hand, "I do." I have a ResMed Escape with the HumidAire attachment because I also have chronic dry mouth.

In fact, the dry mouth was what led to the diagnosis. Back in May 2008, my dentist commented on my dry mouth problem, saying he has it too -- caused by sleep apnea. He prescribed Pilocarpine (which I still take) and recommended I see my MD and request a sleep study. I did, failed the test, and was put on the machine.

I have never become fully used to it. Some mornings when I wake up I find that I've pulled the mask off of my face in my sleep. Other times I have deep red marks around my nose and mouth from the mask pressing against my face. I did find something that helps with that -- putting a thin piece of cotton fabric (t-shirt material) about 6"x8" over my face before putting the mask on. It has an oval opening cut out for the nose. There are still marks, but not as bad.

I've had several different masks over the years. The current one is a ResMEd Mirage Quattro which is the most comfortable one. But I still feel very claustrophobic with it on my face and have really had a hard time dealing with it -- both physically and emotionally, and sometimes just can't bring myself to put the mask on at night.

But when I don't sleep with it, I sure do feel it in the morning. I wake up feeling like crap. My mouth is as dry as cotton and my nose is stopped up. I feel disoriented and very, very tired from all the apnea obstruction that I suffer from when I'm sleeping.

Since I've been using it for the past 5+ years, it looks to me like I have aged a lot in my face. Granted, I've gotten 5 years older, but when I look at photos from 5 years ago it's kinda depressing to see how much younger I looked then. I feel I have aged more in the past 5 years than in any other 5-year period in my life. I have more lines and "ruddy" complexion in my cheeks and nose, and my skin texture looks haggard, especially first thing in the morning when I wake up.

Losing some weight has helped, but my doctor told me I'd probably have to use it for the rest of my life.

When I first got it, it was kind of a fun novelty because it looks like a little canister vacuum cleaner! But that novelty soon wore off.......

 

[countryguy]

I was diagnosed with sleep apnea in 1999 and have been using cpap/bipap machines ever since. I just recently got a complete new setup (my 4th one). I started with a cpap machine, then went to bipap, then auto bipap and now I have a REMstar Auto IQ CPAP with Humidifier and heated hose. I think I have tried every mask on the market - nose, full face, nasal pillows, total face. I am currently using a Fisher & Paykel Forma™ Full Face CPAP Mask. I've always had problems with the mask leaking. After I started on cpap I became a mouth breather because I have severe apnea and my pressure is quite high. I totally depend on cpap - without it I do not sleep at all. I am fortunate that the Ontario government pays for 75% of the equipment and my employer's insurance pays the remaining 25% as Cpap equipment (as is all medical equipment) is outrageously priced. My current setup was $3200. My first cpap machine & mask was $1600, then the next 2 units were $2400. With this current set up I have tried 5 masks already. My medical supplier allows me to try a mask for 30 days and if there are any problems during that time I can exchange it and try another mask for another 30 days.

Gary

 

[kirbytradition7]

I noticed that CPAP machines do look like small canister vacs. I heard that the first CPAP was actually a (canister?) vacuum modified to blow (in reverse) instead of suck.

As I live in Alberta, there is no funding for CPAP machines. I have to pay out of pocket for one, then submit the claim (with receipt/invoice and prescription) to the insurance company for reimbursement. To purchase a ResMed S9 series machine (which is being recommended for me) directly from the provider, the estimate is either $1800 or $2250 (depending on the S9 model). CPAP equipment is indeed pricey up here in Canada. I recently paid $225 for my new mask--a ResMed Swift FX Nano. I am looking at an online CPAP store called Canada CPAP Supply (canadacpapsupply.com), which is offering ResMed S9 models from $800-$1800. I cannot get a credit card up here, since I am a recent immigrant (entered September 2012) and do not have a Canadian credit history, otherwise I would use one.

In the past, when I lived in the USA, my insurance company was direct-billed for CPAP equipment rental/purchase. Up here, the insurance company my employer uses (I am a postdoc fellow at University of Calgary) will only reimburse after the fact.

CPAP machines, I notice, have been miniaturising over the years since my first CPAP machine I got in 2004 (the size of a car battery). The second (and current) one is smaller. It splits up into pieces. The motor unit can work independently as a portable CPAP machine; it travels easily in any carry-on-size bag while leaving the platform (and humidifier) behind. In fact, when I was preparing to travel to New Zealand back in 2010 to give an invited lecture, I found a wheelie carry-on bag that could easily carry both my CPAP motor unit and my 17" laptop! I have used that bag many times. I carry a smaller carry-on bag now (to save my bad back and shoulders), and this machine still fits easily (the motor unit is the size of an old-style, 1980s school lunchbox).

The new ResMed machine I am soon getting is even smaller and easier to carry and travel with (even with its onboard humidifier).

CPAPs also are looking more Star Trekish!

I have also been advised of an alternative or supplement to my CPAP therapy: Surgical advancement (by distraction osteogenesis) of both my tiny jaws (to open up my obstructed upper airway) might help with my Treacher Collins syndrome-associated upper airway obstruction. The challenge, however, is all the scar tissue buildup from my many past jaw advancement surgeries. Back in my day (my childhood in the 1980s and adolescence in the early 1990s), the "state of the art" for oral-maxillofacial surgery for craniofacial cases was to break the jaw (upper and/or lower) along specific axes (the LeFort series of osteotomies), reposition the pieces in a new alignment, then put it all together using rib or other bone grafts, screws, and/or specially shaped metal plates. I still have many of those metal plates and screws in my facial skull structure from all my midfacial and jaw procedures! I also have a lot of scar tissue buildup in those areas. Another problem with me is the inevitable relapse of my lower jaw (perhaps due to the scar tissue and possibly the lack of a stable, functional TMJ anatomy). I feel that for the modern jaw-distraction surgery to work, the TMJ issue may need to be addressed. I wonder why none of my doctors thought of artificial TMJ implants (I have seen them advertised in craniofacial surgery journals). I would jump at the chance to make this surgical alternative work.

Of course, from my extensive past experience, having major jaw surgery involves wiring my jaws shut, possibly a tracheostomy to keep a patent airway during healing over the two months it takes to heal, and a syringe-fed, blenderised liquid diet.

So for my craniofacial-associated OSA complication, there is either lifelong CPAP therapy (a new machine every 4-5 years) or risky major jaw surgery. But these therapies beat dying an early, ugly, violent, strangling death (or a sudden cardiac death, according to the literature on OSA). The "died peacefully in his sleep" concept about sleep apnea death is really a myth--it is anything but peaceful or quiet. I know from past experience choking is anything but pleasant (I have done that with hard meats).

 

[docker]

Fisher & Paykel Opus

I use a ResMed S8 CPAP machine with a Fisher & Paykel Opus Nasal Pillow Mask. The F&P Opus does not cover the mouth, but makes ude of a silicone pillow in the nostrils. I do not have red marks or dry mouth & eyes using it.