If Anyone Needs Convincing Evidence!

[DoriC]

When we first started cpap therapy 5years ago our Dr put us in touch with one of his patients(63yo) who had started successful treatment the year before and was doing very well. He came to our home a few times to help us with questions we had and was so knowledgeable about the equipment and enthusiastic about the improvements in his health. We lost touch but I met him today in a store and I hardly recognized him. He had aged considerably and did not look well at all. He told me he stopped using the cpap 2yrs ago because he got tired of the routine and he slept better without it but confessed that he had very little energy and napped a lot but chalked it up to just getting older. He didn't seem too interested to hear that Mike was still using his cpap every night and doing OK. I could tell by his body language that he didn't want any discussion about the subject so I just wished him well and went on my way. I feel sad for him but it also encouraged me and reinforced my committment.

[letsride]

We are healthier doing our treatment.
Cpap thearpy changed my life!
Reading your story tells me to stick with the thearpy plan.

[Captain_Midnight]

Thanks, Dori, for an excellent and important thread topic.

Two Christmases ago, I enjoyed a holiday lunch w several friends and acquaintances, including one work acquaintance who I knew to be an apnea patient on xpap therapy. This was the last time I saw this person.

Apparently, he chose to leave his xpap at home while visiting relatives for the Christmas holiday, and (again, apparently) that was a fatal decision. He did not survive to see the new year.

Fear is the best motivator, so say the psychologists; and, I wish there was a good way to scare folks (politely, of course) into realizing that xpap therapy is more of a matter of health and survival than convenience (and it's really not that bad once one adapts.)

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[Bill44133]

What a terrible story.. How could some one walk away from their treatment knowing all the risks?

It reminds me of my old neighbor lady Mary who was in her early 60's. I remember her telling that she had sleep apnea and she had to sleep with a machine.
A few weeks later I bumped into her and I asked her how she was doing sleeping with the machine. She told me that it was messing up her hair and gave up on it.
At the time I didn't think much of it, about a year later I met her sister who was moving in to take care of her sister, because Mary had dementia
and could not take care of herself any more. I could not believe how quickly Mary went down the tubes. Less then a year later Mary died from a stroke.
This was about 3 years ago. While at the time I felt bad, and none of it made sense that this could happen to some who really wasn't that old.
With everything that has happened to me this past year I have been thinking of poor Mary and what she went through, because cpap was messing up her hair.

[nanwilson]

Dori that message should be a sticky and placed in the success stories for newbys to read. Your friend was not a success but you and Mike definitely are. It would give the newbys a reason NOT to stop their own therapy after reading this and knowing what a tough time you and Mike have gone through. You are a wonderful example to all of us.
Love ya!!!!!

[Denial Dave]

that was awesome Dori!!

I regret being in denial for years and not starting CPAP sooner.

shh... don't tell my wife that.

LOL!!!!

[chunkyfrog]

Sometimes I forget how much dedication it takes to continue therapy when things get tough, or boring, or whatever.
I applaud anyone who doesn't throw in the towel when there is an absence of immediate feedback.
This often takes real cajones (or the female equivalent)
You guys are my heroes.

[DoriC]

It never gets "boring"! I could use a little of that!

[Wulfman...]

It never gets "boring"! I could use a little of that!

I know. My thoughts are with you, Dori.

I'm always "amazed" at the number of people who either belittle/ignore/disregard/quit this therapy.
I've always said, "it's so easy, a caveman could do it". (well, they could if they had had electricity)

I've told the story before of a personal, family acquaintance who didn't wear his CPAP when he returned from a late night call-out at work.....and he didn't wake up.


Den

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[ReadyforRest]

Thank you Dori for posting that incident. It really brings home how important it is to stick with this treatment. I know several people who have been diagnosed or who know they have it, yet they won't use the equipment. It's working for me, my numbers are good, more importantly I feel good. Every night (and day) I look at that thing on my night table, the hose and hose holder, the contour pillow on my bed, and I lament that I'll have to mask up again tonight. But I will, because it's good for my health. And I'll now be thinking of the story you told as positive re-inforcement.

Thank you!

[teachcsg]

Great stories! This helps remind me to emphasize the importance of not giving up to our pts. I actually have a friend that stopped using it after trying several mask etc.. He acts like he just cant do it....I'm going to show him these and maybe "scare" him into trying again.
Thanks for posting!

[Lukie]

I wish I had been treated 20 years ago after my first sleep study. Back then they did not do much unless your case was really severe. I had a dental device for a while but gave that up because it hurt my jaw. Fast forward 20 years and I started having episodes of racing heart and slow heart. Bradytachy they call it. The cardiologist told me it was from years of untreated sleep apnea. For years I chalked those night episodes of racing heart and waking up feeling wretched as just a bad dream and anxiety and/or depression. Finally my GP convinced me to have another sleep study and it showed I have apnea and drop my oxygen levels. Now I have a full understanding of how important treatment is and the consequences of not treating apneas I wear my mask every night and every time I lie down for a nap. Now I am a born again CPAPer and preach it from the rooftops!

[SleepWellCPAP]

Thanks for sharing that story Dori!

When you mention your friend had aged considerably, it reminded me of growth hormone secretion when in deep sleep.

Here's a link that may be of interest from the National Sleep Foundation.

http://www.sleepfoundation.org/article/ ... -you-sleep

[robysue]

Great stories! This helps remind me to emphasize the importance of not giving up to our pts.

While I totally agree that it's important to not give up, I do want to add this caution: When you are a newbie facing multiple adjustment problems and your sleep has worsened signficantly since starting CPAP, sometimes the last thing you want to hear is: Don't give up, just try harder. It can be very depressing to keep using a machine that is supposed to make you feel better for weeks or months and actually feel worse than before you started therapy.

All I'm saying is that pep talks without giving the patient some useful suggestions based on the experiences of real PAPers is not going to be enough to help a newbie in trouble over the significant hump of hopefully short-term CPAP-induced sleep fragmentation or insomnia. Even better would be a system to put PAPers in trouble with successful PAPers.

I actually have a friend that stopped using it after trying several mask etc.. He acts like he just cant do it....I'm going to show him these and maybe "scare" him into trying again.
Thanks for posting!

Have you actually asked him why he finds it so difficult? While it's easy to blame folks who say "I just can't do this" after trying several masks, it's really much more important to listen to exactly what the patient's complaints are and then address those complaints in a way that makes it clear you've heard what the patient is saying. Some times the "answer" is NOT found by continuing to try more masks, but rather figuring out why a reasonably comfortable mask is not working well (yet).

[ptl4now]

I guess I am a lucky one. I do not remember any adjustment period, any struggles or trials with wearing my masks or using my machines. I went through several masks before I found the right one for me, but even the wrong ones were better than nothing.
I got tested for sleep apnea due to being so very very tired, all the time. Well, I developed sleep apnea, and when it was diagnosed, I was so excited to have an answer to my fatigue! A treatable answer even!

All I had to do was wear this mask, and the world would be right, huh?

Well, yes and no. From the first day, I could tell how much better I felt when I wore my sleep mask and used my machine. The difference was night and day. Sadly, I still have unexplained exhaustion. I still have to take both Provigil and Ritalin to be awake, alert, and active. Sometimes those meds don't do it either. Sometimes, I sleep with my machine, take my meds, and I still cannot wake up. The docs don't seem to have an answer for me:(

But I will say this: If I do not use my machine, I have NO good days. On NO days will my meds wake me up if I have failed to use my sleep machine. My meds are useless against the lack of treatment. Those are days to pretty much stay in bed. If I do not use my machine, I can pretty much guarantee I lose the entire next day to brain fog and naps, and my daughter pretty much eats junk and watches tv, and doesn't get parented.

So, basically, I am a faithful, dedicated user who never skips her treatment.
BUT.....after years of joking about my Darth Vader Masks, it suddenly didn't seem so funny when a man started staying nights with me. I skipped my machine. Yes, I was exhausted, but I could not get all Star Wars with an audience!
It only lasted two days, that was all the longer I could hold out without my treatment. I had to explain to my nice boyfriend that I usually wore this disturbing mask when I sleep. I would turn the light off and sneak it on, when he couldn't see. But than he woke up before me. Yup, he agreed, it is disturbing!

I admit I am not very understanding when people tell me they cannot adjust to the mask. Wait, no. I try to be understanding. I ask them why they cannot wear it. I do not pounce on them or give them over-rated little pep talks. I truly seek to understand, hoping we can brainstorm a way to work through it. Most people do not seem to be able to articulate what the problem is though.
My brother in law refused for years to get tested. He finally did, and came home with a machine he refused to use. We talked about it a few times. Mostly, he kept waking up in a panic, thinking he was choking, or unable to breath. it was quite disturbing to him. yet he continued to work with his mask and machine, and spent months adjusting, being able to wear the mask a little longer each night. He didn't really want to use the treatment, but he recognized he needed to take care of his family. He had two boys in diapers and a wife in a wheelchair, and he needed to be at the top of his game as much as he could. He needed every edge he could get to face surviving. He is now a successful C-pap user, and I applaud him.

That is what it comes down to. For some of us, its no big adjustment. For some of us, it's months of waking up panicked. But its soooo worth it....To feel alive! To feel Alert! To feel AWAKE! to have energy! To be able to drive to work without falling asleep! To be able to get up and be active instead of sleeping all day long!! to be the parents we need to be for our children, to be effective employees, students, sons and daughters. Any adjustment has to be worth it, any amount of months determining to perservere...Again, I really cannot relate with having a hard adjustment, but When it finally works for you, it's magic!! Every obstacle needs to be recognized and overcome to find this magic for each of our lives.