Am I stuck with this thing for life?

DoriC · Post by **DoriC** » Wed Jan 26, 2011 5:53 pm

roster wrote:
avi123 wrote: I am trying to get Treppenwitzs involved!

Treppenwitz can speak for himself, but you may run him away by posting a link to photos of him and family. Have some respect for patient privacy.

Roster, I agree! I would be horrified if that were done to me here without my permission! I hope Treppenwitz has thicker skin than I do and keeps posting. We're here to help.

JohnBFisher · Post by **JohnBFisher** » Wed Jan 26, 2011 6:57 pm

treppenwitz wrote:... Am I stuck with this thing for life? ...

Let me redirect this back to the question at hand. And if you don't mind, I'll give you my take on this question.

Am I stuck with this thing for life?

Hmmm... As you can see from my avatar (and it has to be mine ... why else would someone voluntarily use such a sour puss? 8^) ... I use glasses. I have used them for most of my life. Without glasses, I can barely read the big "E" on the eye chart. With them, my vision in one eye is correctable to 20/50. Barely legal to drive. And it's been that way since I had my eyes checked at age 4.

So, let's see ... I'm stuck with glasses my entire life.

My father-in-law developed Type 1 Diabetes when he was about 4 years old. His family took him to a nearby teaching hospital, where they were testing the use of insulin to help Type 1 Diabetics. Yes, *TESTING*. From age four until he died in his seventies, he used insulin to manage his diabetes.

So, let's see ... He was stuck using insulin his entire life.

I had a friend in high school who lost his leg in an automobile accident. Rehabilitation was rough for him. He was very active. But you know what? He was back walking within a few months of that accident. Sure he used a prosthetic leg.

So, let's see ... He was stuck with a prosthetic leg his entire life.

My point is not that this is not a royal pain in the ass. It is! Trust me, I know how much of a pain it can be to have to strap a mask to your face every night. But I do it because I sleep *MUCH* better with it than without it. In fact, with poor treatment I know that my blood pressure shoots out of control. So, the consequences of not using it is pretty severe.

And yes, I've used a CPAP/BiPAP/ASV unit for about 20 years. It gets old. It gets very old. But the energy I feel from good sleep makes almost makes up for the nuisance. It just does not make the nuisance factor go away. But I choose to see, so I use my glasses. My father-in-law chose to feel and stay healthy, so he used insulin. My friend chose to stay active and walk, so he used his prosthetic leg. And I choose to feel more energetic from good sleep, so I use my xPAP device to help me sleep.

Stuck with it? Yes. It *IS* daunting. Don't let anyone tell you it is not. But we all make these commitments to try to feel better and go about our lives. In the grand scheme of things a CPAP is not too bad. A nuisance? Sure. But something that you only use at night. It's not as if you use it to breathe during the day.

So, don't make too much of this hill. There are other wonderful mountains to climb. And you know what? You will once again have the energy to do so.

Okay, time to get off the soap box ...

[ jbf steps down, grabs his box, and shuffles off the stage ... ]

scrapper · Post by **scrapper** » Wed Jan 26, 2011 7:36 pm

DoriC wrote:
roster wrote:
avi123 wrote: I am trying to get Treppenwitzs involved!

Treppenwitz can speak for himself, but you may run him away by posting a link to photos of him and family. Have some respect for patient privacy.
Roster, I agree! I would be horrified if that were done to me here without my permission! I hope Treppenwitz has thicker skin than I do and keeps posting. We're here to help.

My first response was exactly the same, but I did click on Treppenwitz's member profile on this board, and see he posted his blog website himself......while I would have probably never looked at his profile, I am not as appalled as I first was when I read the post. It still goes beyond my level of comfort and decency that someone would use my pictures to comment on my neck size etc on this forum.....so back to the original question.

SleepingUgly · Post by **SleepingUgly** » Wed Jan 26, 2011 9:41 pm

avi123 wrote:David "Treppenwitz" is smarter than all of us. It seems to me that he wants to entice us to post on his blog about his CPAPing.

Is there something on his blog that would make you think that, because I can't imagine why he'd want US to post on HIS blog. More likely he will write a humorous essay about US. I think there is plenty of grist for the mill on this thread alone. We are like a microcosm of the Middle East. It would make a great sequel to his sleep study post, which was hilarious and made me feel like I was in Israel.

avi123 wrote:Over there, in Hadassah, Soroka, Carmel, Leventhal, etc. are first class sleep physicians.

Also, in Herzliya, WideMed company , came out with a bedside automated sleep analysis system that operates through standard hospital monitors. This arrangement could make most Sleep Study clinics obsolete in the near future. Please check about it and let us know.

Contact:

WideMed, Ltd. about their Morpheus HX bedside computerized automated sleep analysis systems that are slowly spreading here in the U. S.

If you prefer then PM it to me here.

Yes, please get on this right away! I need to find a competent sleep doctor and lab for my father, as there's no way I'm sending him to the one you went to! I figure it should take you approximately 3 years to gather that information. Nu? What are you waiting for?

treppenwitz · Post by **treppenwitz** » Thu Jan 27, 2011 1:05 am

Wow, I go off the grid for a day with the flu and I miss a lot!

1. I appreciate the responses and admit I have a lot to learn about myself as well as the science surrounding apnea and it's treatment. That's why I came here in the first place. I hope to ask many silly questions and get helpful advice in response. That's the point of this forum, isn't it?

2. I'm not sure how to take the suggestion that my posting here was a ploy to drive readers to my blog. Aside from the fact that it's not true, it suggests an alterior motive to my presence here that smacks of both deceit and conceit. I included my blog in my profile for the convenience of those who would want to know some background about me before making assumptions based on the single word 'Israel' under my name. I was not trolling for readers. Thank G-d, i don't lack for those. It's also worth mentioning that I don't like to partition my online 'worlds' since that indeed seems like hiding something.

3. Having written the previous point, I did feel a little strange about having a picture of myself and my family linked here on this site without my permission. I'm not hiding anything, mind you... and it was actually a nice photo. But it made me feel like a pregnant woman who is subjected to people touching her protruding stomach all day long. Yes, it's out there, but it's still mine. A 'please may I' would have been nice.

4. While I agree with one wise commenter who compared my being 'stuck' with the CPAP to those who are stuck with glasses, or other essential medical equipment, it doesn't invalidate my concern. To use the glasses example, someone who has had perfect vision all their life and who suddenly finds him/herself having to wear them all the time can't help but feel saddled. It's human nature. My original question came from a deep seated desire to know if there was any chance this CPAP thing might be a passing phase rather than a life sentence. Believe me, if I do end up with the CPAP machine for life... and it turns out to be a long, and otherwise healthy life...I won't complain. But in my heart I will still miss the freedom of being able to simply close my eyes and go to sleep wherever I am, without thinking about the logisitcs of some external contraption.

5. By and large I have found the discourse on this site to be helpful and courteous. I would hate to have my presence be the cause of discourtesy or contention. Please be nice.

DoriC · Post by **DoriC** » Thu Jan 27, 2011 9:31 am

Treppenwitz, I love your #3, that's exactly the point! And yes, we are nice, very nice, so you'll fit in here just fine. Of course, from time to time you'll find a "pot stirrer"(it's a Jewish expression my mom always used,"kuch lefel??(sp)!)), but after a few pages it gets boring and we always get back to the business at hand, helping each other with our therapy. Keep us posted.

treppenwitz · Post by **treppenwitz** » Thu Jan 27, 2011 10:35 am

Thanks Dori.

BTW, several people have asked what equipment I'm using, so I've updated my profile to include the whole shootin' match.

avi123 · Post by **avi123** » Thu Jan 27, 2011 10:49 am

[quote="treppenwitz"]Wow, I go off the grid for a day with the flu and I miss a lot!

3. Having written the previous point, I did feel a little strange about having a picture of myself and my family linked here on this site without my permission. I'm not hiding anything, mind you... and it was actually a nice photo. But it made me feel like a pregnant woman who is subjected to people touching her protruding stomach all day long. Yes, it's out there, but it's still mine. A 'please may I' would have been nice.

Reply:

In my opinion, parents and grandparents do not have the legal rights to post photos of their MINOR children/grandchildren on the Internet. I never do it, but get hell when I mention it to posters who do it .

scrapper · Post by **scrapper** » Thu Jan 27, 2011 10:54 am

Treppenwitz....

The surprise for me when a different member posted the blog address front and center within our forum. It felt so wrong and like a complete invasion of privacy. I never took your blog connection as conceit or deceit or any alterior motive, or trolling for readers on your part.........having said that, I did enjoy your take and viewpoints on things, and you provided much needed laughter! I appreciate your down to earth honesty--and the connectedness of what you present is who you are.

Welcome...........

KimberlyM · Post by **KimberlyM** » Thu Jan 27, 2011 11:40 am

treppenwitz wrote:Wow, I go off the grid for a day with the flu and I miss a lot!

1. I appreciate the responses and admit I have a lot to learn about myself as well as the science surrounding apnea and it's treatment. That's why I came here in the first place. I hope to ask many silly questions and get helpful advice in response. That's the point of this forum, isn't it?

2. I'm not sure how to take the suggestion that my posting here was a ploy to drive readers to my blog. Aside from the fact that it's not true, it suggests an alterior motive to my presence here that smacks of both deceit and conceit. I included my blog in my profile for the convenience of those who would want to know some background about me before making assumptions based on the single word 'Israel' under my name. I was not trolling for readers. Thank G-d, i don't lack for those. It's also worth mentioning that I don't like to partition my online 'worlds' since that indeed seems like hiding something.

3. Having written the previous point, I did feel a little strange about having a picture of myself and my family linked here on this site without my permission. I'm not hiding anything, mind you... and it was actually a nice photo. But it made me feel like a pregnant woman who is subjected to people touching her protruding stomach all day long. Yes, it's out there, but it's still mine. A 'please may I' would have been nice.

4. While I agree with one wise commenter who compared my being 'stuck' with the CPAP to those who are stuck with glasses, or other essential medical equipment, it doesn't invalidate my concern. To use the glasses example, someone who has had perfect vision all their life and who suddenly finds him/herself having to wear them all the time can't help but feel saddled. It's human nature. My original question came from a deep seated desire to know if there was any chance this CPAP thing might be a passing phase rather than a life sentence. Believe me, if I do end up with the CPAP machine for life... and it turns out to be a long, and otherwise healthy life...I won't complain. But in my heart I will still miss the freedom of being able to simply close my eyes and go to sleep wherever I am, without thinking about the logisitcs of some external contraption.

5. By and large I have found the discourse on this site to be helpful and courteous. I would hate to have my presence be the cause of discourtesy or contention. Please be nice.

Treppenwitz, your blog intro, "blinding flashes of intellect.....just a little too late" is clever and very catchy! I have quite a few days that I feel that way. Anyway, welcome!

Back to the subject at hand. My sleep doctor told me he has had numerous patients go off CPAP due to weight loss. He asked me to think about what weight I was when I started snoring. It was 16 pounds ago. He considered my number of original untreated apnea events and didn't feel weight loss alone would be a solution for me, but who knows? I am about 25 pounds overweight and only good things can come from that weight loss. So, there is always hope for those of us with a few pounds to lose that it may help us in the sleep apnea area. Even if we can't get off treatment, it may prevent diabetes and heart disease. Now to try to lose the stubborn pounds.

JohnBFisher · Post by **JohnBFisher** » Thu Jan 27, 2011 4:16 pm

treppenwitz wrote:... 4. While I agree with one wise commenter who compared my being 'stuck' with the CPAP to those who are stuck with glasses, or other essential medical equipment, it doesn't invalidate my concern. To use the glasses example, someone who has had perfect vision all their life and who suddenly finds him/herself having to wear them all the time can't help but feel saddled. It's human nature. My original question came from a deep seated desire to know if there was any chance this CPAP thing might be a passing phase rather than a life sentence. Believe me, if I do end up with the CPAP machine for life... and it turns out to be a long, and otherwise healthy life...I won't complain. But in my heart I will still miss the freedom of being able to simply close my eyes and go to sleep wherever I am, without thinking about the logisitcs of some external contraption. ...

Exactly! It is a pain in the keester. If someone could wave a magic wand, and I would no longer need the xPAP device, I would say "Wave Away!"

Unfortunately, like suddenly needing glasses, it is one of those things that changes as I get older. It's a pain, but living without it is a bigger pain.

And there is NOTHING wrong with someone who struggles with their new situation. In fact, I'ld say it's a healthy process that will eventually allow you to live with your new situation. The good news is there are lots of folks here who've gone through the same struggles. So, shout. Sometimes we can pass on a bit of advice that can make it a little easier.

FormerlyLeo · Post by **FormerlyLeo** » Thu Jan 27, 2011 6:15 pm

Just to provide another perspective, you quite possibley are not stuck for life with your machine. There are other alternatives to CPAP therapy out there. However, CPAP is the catch all, the treatment that has the most success the most percentage of the time

Other options are surgery (though this bears risks of it's own and is NOT 100% effective!!) and a dental device. Dental devices aren't the smoking gun answer to a problem either. They usually involve being on your CPAP machine for at least 3 months with good compliance before they are considered. Most insurance companies believe them cosmetic, and your health and dental insurance will likely spend many a day debating who will be paying for such a thing, often leaving you to hold the bag. And personally speaking, of the 3 people I have seen with a dental device, it wasn't very effective (Polysomnogram with the dental device in place still had an AHI of around 20 in all 3).

So while the machine isn't the greatest thing to use to some, there are other options out there. Talk to your sleep doctor, he/she can hold alot of answers for you!

NightMonkey · Post by **NightMonkey** » Fri Jan 28, 2011 10:12 am

treppenwitz wrote: Am I stuck with this thing for life?

Here at the age of 25 is how I see it.

I am likely "stuck" with severe obstructive sleep apnea for the rest of my life.

I am blessed to have "this thing" called CPAP to deal with my "stuck".

(I will not carry around hopes for a novel easy treatment or cure. If someone develops it, I will be blessed doubly.)

tomjax · Post by **tomjax** » Fri Jan 28, 2011 10:22 am

Am I stuck with this thing for life?
Good question.
To answer it may be you should put it into perspective.
Some here may relate to this perspective.

I ask the same question in context to my first and present wife.

Vastly different answers.

It is perspective.

Bons · Post by **Bons** » Fri Jan 28, 2011 11:24 am

I agree wholeheartedly with nightmonkey.

I hate my ASV. I hate waking up when it leaks. I hate having to disconnect it every time my elderly dog has to go out at night. Next month I'll be rooming with an unknown roommate at a professional conference (not attending with spouse or friend, and all rooms are doubles); will my ASV keep her awake?

But it will hopefully prevent me from developing the heart arrythmia that my brother developed from his untreated apnea (most likely cause). His cpap sat unused he was frightened into starting therapy again by his cardiologist. Most days I'm alert enough to drive safely, which is a big improvement for me.

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