Introduction of dsg

[dsg]

Hi everyone!
I'm new to this board/group/room/gang (what do we call ourselves, exactly?), but I'm not at all new to CPAP's or sleep apnea. In fact, I'll soon be celebrating my five year anniversary of CPAP usage. In a nutshell, that's how I found this place.

I'm sure most users here had the problem of bed partners and people in the next county complaining about our snoring. I had gotten used to that, but of course didn't think it was a bigger deal. That is, until one night when I woke up to find my girlfriend (now wife) who had a long career as a health professional, feeling my wrist for a pulse. She hit on something that nobody else I had ever been with had bothered to notice, which was that when I wasn't snoring like a 747, I wasn't actually breathing. Over time, she convinced me that my sleeping patterns weren't normal. Mind you, I hadn't been all that symptomatic other than the whole snoring/not breathing deal. I wasn't falling asleep at inappropriate times, I was doing well at my job and had just gotten promoted when suddenly I *did* become grossly symptomatic. I *did* fall asleep or get groggy, a lot.

Watching TV, driving, and, uh, other times that I needn't get into here. Finally, Patricia (who will forever after here be known as P) insisted I get checked out, which I did. I don't know who else here is from Boston, but this is a terrific place to be if you have any medical disorder at all. We have great sleep research, and the Sleep Disorder Clinic at Beth Israel Deaconness Hospital is outstanding.

I met Dr. Robert Thomas, who did an intake, and immediately got me in for The Test. Yes, I'm sure everyone knows The Test. The wires, the jelly goo that attaches the wires, the straps, the cables, the whole nine yards, followed by "good night, sleep well!". Yeah, right. In about 5/5 hours, my O2 sats bottomed out at about 60% not once, but half a dozen times. The alarm was annoying. My apneas ranged between 15-45 seconds every minute. I think I averaged about 80 apneas an hour. So yes, I was definitely suffering from severe sleep apnea.

What Dr. Thomas couldn't understand was how I was able to function at all with a condition that he was sure I had had for a good 20 years or so (I was in my mid-30's at the time). At that point, though, my brain and body had determined that I had really gone on like this long enough, and I really began to break down. I no longer had any stamina. I was getting drowsy all the time. I fell asleep in meetings at work, in the car, on the couch, pretty much constantly. All the sleep apnea chickens were coming home to roost, and they were making a mess.

In January of 2001, I got my CPAP and things were never the same again. I had no problem adapting to it and tolerating the mask. Within two nights I was sleeping just fine, and experiencing DREAMS again!! (during my sleep test, Dr. Thomas saw one period of REM sleep, and that was for only 15 minutes). I've had my mask and hoses replaced once a year, and cleaned them once a week (I've read it should be daily, but my life doesn't work like that...I don't have that kind of time).

I'm now about to take delivery of a brand new unit for the first time since I started CPAP therapy 5 years ago, and I'm excited about the advances in the technology. That's what's brought me here. I'm interested in finding out how people do with their CPAP's, the problems they find, the solutions they have, and all that jazz. Oh, I travel a lot, both in the US and Europe, and I've never had a problem with my unit, mask and hoses.

My wife and my CPAP have saved my life!

[TXKajun]

Hi, dsg and welcome to the board! Great intro post.

We've got a great and diverse bunch here. Some of us are newbies, some middlebies (is that a word???? ) and some of us are old timers. Sit back, post us some of your wisdom from 5 years experience and relax. It's a great place!

This therapy WORKS!!! (I'm a middlebie....only 9 months on da hose!)

[neversleeps]

Wow! Desats to 60%!!!! Your wife really did save your life!

Great to hear of your success. Is the S8 Elite your current machine or the new machine you are soon getting? Will your new machine have accompanying software so you can see your nightly results? It would be really interesting to see your data... not that you need to with the fantastic results you've been feeling.

Welcome!

[dsg]

Thanks for the welcomes! My new machine being delivered next week is the ResMed S8. When I get home I'll report what the old one is, but it's becoming clear from some quick research that the technology has advanced tremendously since early 2001. My soon-to-be new unit is about 25% the size of the current one (maybe less?). I can't wait to see it and plug it in. My mask has been the Ultra Mirage, and although I realize it's a little bulky, I do fine with it. The nasal pillows won't work too well for me.

The whole idea of CPAP software and instant results is a completely novel concept. Such a thing didn't exist back in the old days....(damn, I'm brand new here and I feel like an old-timer!). I've never seen readouts of my nightly trips to dreamland since the awful titration study. I'm looking forward to seeing what it has to say. I'd ask how the results will spit out, but I'll see it myself soon enough. There is one great line from the study, that I need to share: The sleep tech that night hadn't seen anyone with apnea as bad as mine, I guess, and he thought seriously about waking me because he thought I might die otherwise. When I did finally awake, he looked at me with a very worried expression and said "Man, people got what you got, they die in their sleep." I'm pretty sure he wasn't supposed to say that to a patient first thing in the morning, but at least it confirmed what P had suspected all along.

To me, the proof of the efficacy of CPAP was so immediately obvious that I've become a zealous missionary for the cause. Quite simply, it saves your life. I've lost count of the number of friends, family, colleagues and even faint acquaintances that I've preached the CPAP gospel to (A nice Jewish boy probably shouldn't talk in terms of preaching the gospel, but THIS is important).

[Ric]

You will love it here. Folks are friendly, helpful, and just bubbling with good advice. Without it I probably would have bailed after the first night under "THE MASK".

In so many ways your story is my story. Except I'm about 5 years late. I'm just getting started and have been here only a few weeks, and on CPAP even less. But I KNOW I'm not going back.

I too married a health care professional. I thought that marrying a physical therapist guaranteed a full-body back rub and massage at LEAST twice a day. HAH! She at least had the good sense to check my pulse in the middle of the night when I stopped breathing. (And with the other hand check my insurance policy on the night stand.)

I finally decided ENUF was ENUF, and broke into the health care system. Had to change doctors to find someone who could even recognize the situation and knew what to do about it and expedite the process. I now have the coooooolest doc who is committed to getting me what I need, who will write a script for whatever "we" think is necessary or useful, and will do it quickly. That is important. And he's not "invested" in any particular technology, DME, or pressure setting. I'm sorry for all the people who post here who are stuck with "old school" doctors, and suffer accordingly.

Thanks for joining, and sharing. You will learn soon enough, mikemoran is the poet laureate here, well respected, Lori is everybody's godmother, and a lot of others that post here consistently with good advice, (usually MUCH better advice than most DMEs). You came to the right place. Diz plase RAWKS !!!

(i can't believe I just said that)
<backspace> <backspace> <backspace> <backspace> <backspace> ...

[mikemoran]

DSG you are just the kind of people that this board needs. Success seems so fleeting to many of us and yoru kind of story needs to be told. Welcome on board.

Just a note there are different ResMed S8 machines. The S8 Escape is just a CPAP and the read outs aren't much different than on your current machine. The S8 Vantage is an autoPAP with a self adjusting algorythm and provides full software support. You should find out which one you are getting.

[neversleeps]

When I did finally awake, he looked at me with a very worried expression and said "Man, people got what you got, they die in their sleep."

YIKES!!!!!!!!!!!!! Now there's something that will wake you up in a hurry!!

[Ric]

(what do we call ourselves, exactly?)

HOSEHEADS?

[dsg]

Hoseheads. I love that. I can add it to the many things I've been called in my life! Thanks, mikemoran. I've just called and left a message asking for a Vantage instead of the Escape, or whatever else I might have gotten. See? I'm already learning tons from all you hoseheads! (I feel like I should say that with a good New Yawk accent to get the full effect)

Although it's true I've been a hosehead for awhile now (I am just loving saying it), I have so much to learn about the advances in technology and practice. I feel like I've been on an island this whole time, and I know nothing about how anyone else copes.

Dr. Thomas has told me that in his experience too few of his patients (or other research subjects he's learned about) use their CPAP's all night long, and therefore good numbers on CPAP treatment effectiveness are still sketchy and hard to pin down. I don't get that part, actually. If I try to sleep without it for even the shortest nap, I have a terrible time, and feel much worse for the effort. My throat is sore, I wake up groggy and disoriented, and I get a small taste of what life was like pre-treatment. I'm incredibly fortunate that I tolerated the mask just fine from night 1, and it's never posed the slightest problem for me. I know it's not true for everyone (my older brother in California, for example).

I guess the best way to describe life as a hosehead is that in the past 5 years I became ME again. I can stay up to all hours if I like (or not), I can watch a whole movie without falling asleep, my dosage of anti-depressants (seems to be a very, very common occurance for sleep apneacs) was cut in half. Then there's the whole cascade of effects that would have happened to me later in life, that now won't.

The single most interesting thing Dr. Thomas ever told me? His increasing belief that sleep apneacs (treated or untreated) are very likely adult survivors of SIDS. He (and colleagues) are seriously considering the possibility that many cases of SIDS may in fact be death by sleep apnea. Interesting, huh? It makes sense, actually, in a scary, chilling, oh-my-god-that's-not-a-crazy-idea-at-all way.

[mikemoran]

You will learn soon enough, mikemoran is the poet laureate here, well respected,

I actually think of myself as the comic pages LOL

[Guest]

Dr. Thomas has told me that in his experience too few of his patients (or other research subjects he's learned about) use their CPAP's all night long, and therefore good numbers on CPAP treatment effectiveness are still sketchy and hard to pin down. I don't get that part, actually.

I don't get that either. I was looking at one study (comparing straight cpap to c-flex) that said the cflex users averaged about 5 hours a night. Why would you take it off? I personally don't wake up unitl the next morning when I'm using it so unless I took it off in my sleep I don't understand that stat.

The single most interesting thing Dr. Thomas ever told me? His increasing belief that sleep apneacs (treated or untreated) are very likely adult survivors of SIDS.

Great, I'm already checking my 11 month old a couple times a night (can't believe he's finally sleeping! Besides, he's just so darn cute!). Now I won't sleep at all worrying that he inherited this from me!!

BTW - thanks for your story. I was clocked at well over 100 episodes an hour. a) when I hear stories like yours I sometimes can't believe I'm still alive and b) I really have to call all my college roomates and apologize for making them suffer needlessly. First thing I did was call my parents (my Dad's a classic wallshaker) and told them to get to a sleep center. My mother can't understand why Dad's so tired all the time. Duh!! That was my gift for Christmas.

[xzombie]

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Wasn't logged in when I wrote that. Sorry.

[ozij]

(what do we call ourselves, exactly?)

The few the proud and the inflated.

Courtesy mikemoran - poet laureate, court jester - and one of those with great serious posts as well!

O.

[Colorado Jan]

My results were quite a bit like yours....AHI of 85 and oxygen desats down to 50-60%. I am married to a doctor...ummm....well, but he had never SLEPT with a sleep apnea patient before. He thought I had very mild apnea at best and didn't think it warranted treatment....wrong.

But I had surgery this summer and during the night they came in to check my oxygen levels...50%...and I awoke to find several nurses staring at me. I asked what was going on..and they said my oxygen was quite low. I asked what does that mean? And they said...well, usually it means you are in the ICU and dying. They were really flipping out! I assured them I wasn't dying....and as soon as I healed enough from the surgery I was in a sleep lab getting evaluated. Been on CPAP since August.

Welcome to the board!

Jan in Colo.

[neversleeps]

I awoke to find several nurses staring at me. I asked what was going on..and they said my oxygen was quite low. I asked what does that mean? And they said...well, usually it means you are in the ICU and dying.

I can't help but think that for you and dsg (and countless others I don't know about) this therapy really saved your life! I know it's something that's good for your health... but to think of people needlessly dying in their sleep with OSA being the culprit, and if only it had been diagnosed and treated... well, it really blows my mind.