A new member but a 6-year patient

[swrinfla]

Hello guys.

I've used a CPAP for just over six years. I'm a regular member at my local sleep apnea support group here in The Villages, Florida. Since our 'facilitator' will be away for our next meeting in mid-May, I've been 'chosen' (read: railroaded) to lead the open discussion.

So, I'm brushing up on my knowledge of our affliction, in the hopes of offering other members some new support.

My research led me to this site. Since I participate in a couple of other sites which operate in a same or similar way, I have learned that devoted members of such sites can offer huge amounts of support, advice and encouragement!

So, may I offer some questions for discussion?

Newly diagnosed patients inevitably have a 'bad' time accepting whatever device they're saddled with. Any words of wisdom (that is, experience) to offer these folks?

Every meeting, there are questions about the 'care' of the device. The most common, of course, revolve around the cleaning of tubes, masks, water chambers, etc., etc. Older patients inevitably have strong words of advice but many of them disagree! Question: do you have any really, really strong words of wisdom (that is, experience) to offer these folks?

Theorhetically, one's best source of information should be your sleep doctor. Realistically, most of us know that we patients know considerably more about the practicalities of dealing with our disease than do our physicians. Any thoughts on this?

I look forward to reviewing your answers.

SWR

[chunkyfrog]

Is your group sponsored by DME's, or anyone who might
have a vested interest in keeping the discussion away from
getting efficacy data machines? The 'support' group in my city is.
I've stopped urging people to go there, but instead direct them HERE.

[swrinfla]

chunkyfrog:

Thanks for a prompt acknowledgement of my post!

The group was sponsored, originally, by a small DME. His firm lost out on Medicare's ill-advised bidding process and he very nearly went out of business altogether. He still attends most every meeting and is very respected, especially since he is an OSA patient himself, as well as a certified Respiratory Therapist.

We have never had an issue with his objectivity, though I can certainly see how it might effect a group's outlook.

SWR

[Pugsy]

Welcome to the forum.

Cleaning schedules? If you do a little reading here you will find that schedules vary almost as much as the patients themselves vary. Here's a recent thread and believe me...there are hundreds more just like this one. Our discussions probably mimic your own meetings. Hard core schedule keepers and then others who are more relaxed about things.
viewtopic/t77124/Cleaning.html

Do you ever discuss software or data or monitoring your own therapy within whatever capabilities the machines offer?

Mask fit? There are some good videos available to actually show how to put some of the masks on.
As well as some basic information.
http://www.cpaplibrary.com/education

[Slinky]

Here's THE chance to let patients know about availability of fully data capable CPAPs and how the CPAP data is COMPLIMENTARY to the in-lab PSG data and the CPAP's data value when detecting and solving acclimation problems and the clues that data can give the DME's RRT and the sleep doctor. Presented in that light if shouldn't offend the DME providers and sleep professionals and yet only the dumbest most hopeless PAP users will fail to pick up on the data's value to themselves.

[JohnBFisher]

Greetings and Welcome to the forum!

Glad you found this crazy place. As you will see there are a lot of folks here who try very hard to "Pay it forward". Perhaps we can not help the individuals who helped us along the way, but we sure can and do try to help the next person coming along the path.

You mention some questions. Let's see if I can offer some ideas.

... Newly diagnosed patients inevitably have a 'bad' time accepting whatever device they're saddled with. Any words of wisdom (that is, experience) to offer these folks? ...

There are at least a couple sides to this. First is the "acceptance" of the therapy. Second is struggling to make it work. Third there is INVOLVEMENT in the therapy.

First, let's tackle the "acceptance" piece of it first. Some people absolutely rebel against the idea of using an xPAP device (CPAP or BiPAP or ASV or AVAPS or ...) because it would indicate they are "weak" and not healthy. Yet those very same people will put on specially customized shoes, and don their glasses or contacts and maybe even put in their hearing aids. It's just another device to help us be healthy. So, acceptance is just one of those things we need to learn to do to get past our own mental barriers and feel as well as possible.

Second, we all struggle to make it work. I would say that more often than not getting the mask right is the biggest hurdle. Then comes the hurdle of dealing with compressed air (the need for getting the humidification correct). Of course in Florida that's not as big and issue as it is in Arizona! But it can add to the complexity of the whole thing. Plus, it takes time (months usually) to become very accustomed to using the xPAP device. When I first started using mine (more than 20 years ago), I took a few days off work so I could sleep - or not - as needed. It's okay to realize that it takes time to adjust to having this reverse vacuum hooked up to you every night! But I am now at the point that I can not imagine sleeping without my ASV unit.

Finally, we often encounter the attitude from doctors and DMEs that we should not be involved in our own therapy. Hogwash!! Let me compare this to another ailment to show the fallacy of the thought. I am a Type 2 Diabetic, who needs to take insulin four times per day. Now, if I had a doctor that told me to NOT monitor my blood glucose levels and not worry about what my A1c test said, I would probably (a) report my doctor to some medical board and (b) fire that doctor and go find one who understood that my involvement in my diabetes therapy is CRUCIAL to my health.

Without my involvement, I would not eat properly. I would not administer insulin properly. I would tend to get very sick and suffer many of the common consequences of diabetes (heart problems, amputations, etc). No thank you! No matter what anyone says, I *WILL* be involved in my diabetes therapy.

How is a xPAP device any different? If it provides therapy numbers you should monitor it to look for common problems. Are the leaks too large? Are you having an increase in the number of apneas? Are you sleeping well? Tell me it's not as life threatening and I will unleash that exhausted driver on you .. None of us want to be that driver nor face that driver. And if I fail to make certain my therapy is effective, I am just as dangerous behind the wheel as a diabetic who has a low blood glucose event. Someone may die from it. This is not theory. It's fact, proven by numerous studies.

... Every meeting, there are questions about the 'care' of the device. The most common, of course, revolve around the cleaning of tubes, masks, water chambers, etc., etc. Older patients inevitably have strong words of advice but many of them disagree! Question: do you have any really, really strong words of wisdom (that is, experience) to offer these folks? ...

In a nutshell, it's the same I offer to new parents. I grew up and played in the dirt, probably ate stuff I should not and survived. Unless my immune system is compromised (and it is obviously weaker in an older person), you *really* do not need to worry about the cleaning. If you look at the mask and say "Gross" then it's probably time to clean it. But as long as you use distilled water in the humidifer, change the filters regularly, it is a fairly sterile environment. There's nothing for the germs to eat. So, it's basically a safe environment. Most people sleep on beds that have far more germs than their xPAP devices. Don't get hung up about it. But as I said, if you look at it and say "Gross!" then go ahead and clean it. I've been using that approach for more than 20 years. It works. In fact, I have FAR fewer infections now than I did 20 years ago.

... Theorhetically, one's best source of information should be your sleep doctor. Realistically, most of us know that we patients know considerably more about the practicalities of dealing with our disease than do our physicians. Any thoughts on this? ...

Let's compare it once again to diabetes. While my doctor might know more about the disease and all of the complications, she has NO clue what it is like to live with the injections several times per day. So, I go ask other diabetic patients when I want to know the "tricks of the trade". But I still go back to her if I feel the therapy is no longer effective.

Ditto with my sleep doctor. He has no clue what it is like to live with an ASV unit. But others here do. They know the tricks to make it work. But if I feel as if my therapy no longer helps me sleep well, it's time for a discussion with my doctor. Even if I am the one that changes my unit, I discuss it with him.

Hope that helps.

[GumbyCT]

My research led me to this site.

Many of your questions I am sure are answered here in some form or another. In the interest of time I will see if I can get you started.

Newly diagnosed patients inevitably have a 'bad' time accepting whatever device they're saddled with. Any words of wisdom (that is, experience) to offer these folks?

I don't think that is unusual since faces are like fingerprints and we all have a diff look
I will paste an answer I recently gave privately.

• This last local support group meeting it was mentioned (for those who are claustrophobic) to simply wear the mask for as long as one can. If possible, wear it while awake for a period of time before going to bed. Increasing the time as you can.
  
  Most of us have this problem yet once we climb that mountain will NEVER again sleep w/o this contraption. Go figure.
  
  One man at the meeting mentioned it took him 11yrs to get his therapy effective. He is an older man and I have no reason to doubt him. Seems like the engineer type.

Every meeting, there are questions about the 'care' of the device. The most common, of course, revolve around the cleaning of tubes, masks, water chambers, etc., etc. Older patients inevitably have strong words of advice but many of them disagree! Question: do you have any really, really strong words of wisdom (that is, experience) to offer these folks?

I see Pugsy answered this. Thank You Pugsy. Most of use will clean everything at least once until we learn that we often cause more damage this way.

Of course you will get a variety of opinions on cleaning here but my opinion is that leaving things open to collect room bacteria or washing with tap water only introduces opportune bacteria into an otherwise closed system.

Theorhetically, one's best source of information should be your sleep doctor. Realistically, most of us know that we patients know considerably more about the practicalities of dealing with our disease than do our physicians. Any thoughts on this?

Another paste...

• As for surgery - CAUTION -
  Surgery can help only a select few, others it makes life worse. Keep in mind a surgeon only makes money when he performs surgery. Be careful the one you see doesn't have a boat payment coming due.
  
  ...remember this sleep business is a "Money Mill". Most people are in it for the money.
  
  Whether they are docs or DME's - NO One cares about your health as much as YOU should.
  
  In closing I will say - "I never trust a man with a mask on his face AND a knife in his hand".

When it comes to software and checking "Your Data" - my thoughts are ...

• I think the software was really written for the insurance companies. So they have a way to determine IF someone is using the machine. You can use the machine for years yet not have effective therapy.

Just wearing a mask all nite for years is NOT my idea of effective therapy for sleep apnea.

Welcome to THE Best forum on the internet.

[Grand-PAP]

I'm a regular member at my local sleep apnea support group here in The Villages

Hi swr,

I live in the area and sent you a PM regarding The Villages users group.

[swrinfla]

Wow!

I am indebted to 'pugsy,' 'slinky,' 'JohnBFisher,' and 'CumbyCT,' among others for your prompt and thorough input!

I have to be a tad careful here, as I may, inadvertently, become more knowledgeable and therefore more eligible to be my support group's "manipulator!"

Not necessarily all that bad of an idea, except that I am pretty well heavily-connected with a number of other groups!

SWR

[IndyDave]

I'll toss in my long-winded 2 cents about new users. I just started about 1 month ago... and I have a friend who's husband got his machine over a year ago, and has only tried it 5 nights - when she's nagged him to do so, and she's begging me to convince him to try again, so I've been thinking about this. I think the biggest psychological issue to hit new users, perhaps especially younger people, or ones who have no other real health problem, is the fact that this has an immediate impact on how they live their lives, and the fact its likely to for the rest of their lives.

You now have to keep your cpap need in mind for everything - if you are going on a trip, you need it. You may be bad enough you may not be able to take that spontaneous nap without it. No more last minute decisions to spend the night away from home - no crashing at your friend's house because it's late and you've had a few. I think its those thoughts that set up such a resistance to using cpap, and that first intolerable night of "having that alien clamped to your face" is all the excuse needed to tell themselves this doesn't work, or it isn't going to help me, because last night was worse than not using it. Frankly I think that you need to go through the 5 stages of grief to come to acceptance of the impact on your life.

That said, I didn't quite go through that - but I did several years ago when my type2 diabetes required that I take an insulin injection every night. So for me this was just another "burden", but one I was ready for. I knew i had apnea, I knew it was really having an effect on me, so even though my first 10 days or so were really tough, I was determined.

So the message to give is that yes, this is an imposition on their lifestyle, but in the long run will improve their life. And its not just a snoring cure, the snoring is probably a symptom of a real health problem. That probably most of us were angry and depressed and in denial about starting cpap whether we knew it or not, so help them understand that. And the important thing is perserverance. Like has been said, try to get used to the mask, and getting the right fit when not sleeping. But yeah, it's ok that first night to take it off after an hour if you can no longer tolerate it, but when you wake up next, stick it back on and try again. Set goals, that OK I wore it for a total of 2 hours last night, tonight I'm going to double that. That yes, you may be more tired during the adjustment period, and that could be days or weeks, but that's normal, and one day you will wake up feeling better than the day before.

[Grand-PAP]

Hi SWR,

Don't know what the problem could have been that required you to send THREE PMs, but I did get the third one. I sent you a PM response, but it has not been accessed.

[Janknitz]

swrinfla wrote:
Newly diagnosed patients inevitably have a 'bad' time accepting whatever device they're saddled with. Any words of wisdom (that is, experience) to offer these folks?

To me one of the best ways to be successful with your therapy is NOT TO BE SADDLED with your machine but to take an active role in choosing the machine and mask and how they are set up so that they work well for you and so that you have a vested interest in your therapy's success.

Unfortunately, by the time someone makes their way to a support meeting, the opportunity to have some control over your equipment has long passed. And often that's the crux of issues people struggle with. Especially when the have no EFFICACY data and are flying blind.

[chunkyfrog]

swrinfla:
FYI: in order to read PM's, just look up near the top of the page (you have to be logged in)
next to User Control Panel, click on (__ new messages) -ta-daa!

[swrinfla]

I send huge thanks to all. My meeting went quite well, to my great relief.

I read remarks posted earlier by JohnBFisher, GumbyCT and IndyDave. Members were intrigued and definitely interested in these guys' insight!

Grand-PAP made a personal appearance at the meeting, which encouraged me no end.

I encouraged those in attendance to log into and join this forum, as I think there is one h*** of a lot of supportive care here!

Balancing my various on-line forum interests is now causing me some stress, but I am increasingly satisfied that such forums can provide enormous support to those who are "challenged!"

SWR