Survey: how much do we want new treatment options?

[imtired]

Amir, Gam im zeh nenatseach.

google translate told me its german... but didnt translate it

[Roman Hokie]

Ah. I must have missed something since the first post. Sackler School is in Tel Aviv, Israel. Sure, there's a campus in NY, but that doesn't mean that's where Ari is.

Sorry bout that, Julie.

[happysleeper]

Sackler School is in Tel Aviv, Israel. Sure, there's a campus in NY, but that doesn't mean that's where Ari is.

That's one of the functions of our global community; Amir could be at either campus, but his school could be affected by his breaking US laws, if he is. I'm sure that the Tel Aviv campus would also be very concerned about medical ethics. By posting my concerns, I wanted to caution Amir, but I also want to encourage him to keep up his personal study of his own condition so that he can continue in medical school in good health. With his enthusiasm for inquiry, he has the makings of a good physician!

Here's some history on medical ethics, if you're interested: current international medical ethics originated after World War II, based on guidelines developed from the Nuremberg Code, in 1947. The code resulted from revelations of unethical human behavior that occurred during the war. The World Medical Association's currently adopted Declaration of Helsinki delineates specific ethical principles for medical research, including:

* development of a formal research protocol submitted to an IRB before research begins (section B 15)
* privacy of subject data addressed (section B 25) and
* written, informed consent of subjects (section B 24) .

The declaration can be found at http://www.wma.net/en/30publications/10 ... index.html

I'll get off my soapbox now...

Happy Sleeper

[SleepingUgly]

Amir, Gam im zeh nenatseach.

SU, Would love to know what you wrote to Amir and in what language?

It's obviously Klingon. The meaning is something close to "eat my shorts", if I'm getting it right.

And this would seem to be an allusion to the 1985 John Hughes film "The Breakfast Club", in which Judd Nelson speaks this line to the Assistant Principal. So I think what SU is trying to say, in a roundabout way, is that Amir should submit to CPAP, and he will thereby live to enjoy breakfast.

The last few CPAP sessions, I've had air for midnight snack, followed by Gas-X for breakfast. Is that what you meant?

As far as I am aware--correct me if I'm wrong--the KNOWN health risks associated with untreated apnea lie solely in oxygen desaturations. So, if Amir were diagnosed with apnea without significant oxygen saturations, he will likely live to see as many breakfasts without CPAP as he would with CPAP (assuming he doesn't fall asleep driving). He just may fall asleep while eating them.

I don't have Hebrew letters on my keyboard so I tried transliteration. Let's see if he responds. Assuming my transliteration is understandable, if he understands it, he could be in Israel or in the United States. If he doesn't understand it, he is not in Israel.

That is if we didn't chase Amir off the board for not immediately embracing a treatment that looks primitive even by the original Star Wars standards.

[Janknitz]

Dear Amir,

Hopefully, at some point in your medical education you will learn about the five stages of grief that Elizabeth Kubler Ross first identified. These stages don’t apply only to individuals who are dying but to anyone facing any type of loss, including the loss of how they regarded their own health, when faced with a diagnosis.

It’s important for you to understand these stages as a physician. The first stage is DENIAL, followed by anger and bargaining, and denial is often the immediate response when you tell a patient a diagnosis that person may not be prepared to hear. At that point, everything else shuts down, and you have to learn how to work through that with the patient to get to the point where there is eventual acceptance, in order to proceed to effective treatment. This is part of the therapeutic relationship that you will learn to build with your patients, and woe unto the physician who does not learn to respect this process.

You seem to be in that denial-anger-bargaining stage yourself about CPAP treatment. It may be unwelcome, but it is a great lesson that will serve you in your profession as you learn empathy for the patient’s feelings and point of view. My guess is that you are suddenly feeling a huge loss of control, and as someone who has made it to medical school you are very used to being in total control. Note that there is one more stage before acceptance—depression. You should be prepared for that and ready to work through it.

I would suggest that you get a diary and write down your feelings about all of this. You may be a person who has difficulty identifying and facing your emotional responses. It will help you immensely to understand your responses and in dealing with patients in the future.

While OSA is only sometimes curable, it is very treatable, and by recognizing your responses and taking control where you may, you will come a long way in your own care and in learning to care for others.

CPAP therapy IS intimidating, but one morning you will wake after a great night’s sleep on CPAP and understand what keeps bringing the rest of us back to it. With the stress of medical school and residency ahead of you, getting a handle on your OSA is going to be crucial to your success.

Good luck!

[ozij]

The name is "Amir", by the way.

Aren't you goint to translate, SU?

Why is it so intimidating, Amir? What kind of tips would help you try the therapy that was recommended? Are you concerned about (not) finding the love of you heart when you have a CPAP? Do you know what really disturbed that friend's girl friend?

O.

[Roman Hokie]

My bad. I'm usually better with names. Please forgive me.

[SleepingUgly]

Aren't you goint to translate, SU?

I thought we'd let Amir, although you can feel free. I think my translation would be too literal, and would not adequately convey the spirit with which that phrase was coined or used.

[kteague]

From one with sleep apnea to another, welcome to the forum. Your initial reaction to the prospect of using cpap is not unusual. Nothing wrong with wishing there was a better way, and even looking for it. Sure hope in the meantime you will avail yourself to whatever treatment is effective for your severity of sleep apnea, as change usually comes slowly.

I did not get the impression your proposed survey would be under the auspices of the university, just that you mention it and your field of study as part of introducing yourself. I think it just stands to reason many, if not most, would be open to a "better" way, but not just another way among the options already available. Some have said what "better" would have to look like for them. Consider that you may have a better grasp of the issues if you first pursued effective cpap treatment for a significant period of time. Right now your bias against it is your motivator. While your bias may be valid for you personally and prevail even with effective treatment, at least your perspective wouldn't be as an observer.

Best wishes in your own treatment.

[elena88]

"Hopefully, at some point in your medical education you will learn about the five stages of grief that Elizabeth Kubler Ross first identified. These stages don’t apply only to individuals who are dying but to anyone facing any type of loss, including the loss of how they regarded their own health, when faced with a diagnosis."

Oh wow, did you hit the nail on the head!

I totally forgot that I went thru that in the beginning, and actually before AND after each visit with my cardiologist.. what a roller coaster..
all five stages each time, and there is no time limit of how long you can experience each one.. you can go thru them quickly and over and over..
what an eye opener.


Now this all makes perfect sense!

thank you!

[snipsnsnails]

Hey Amir, WELCOME! I wish you all the best in hunting for a better alternative to xPAP to treat sleep apnea. In the meantime if your doctor prescribes xPAP for you I hope you'll consider pushing past your intimidation and try using it. Whe I came to this board just a little over 3 weeks ago I was scared, humiliated and very angry about my diagnosis. I've slept with my mask and machine for just 13 nights now and can't really believe it's been so easy to adjust to. A lot of what helped me was the compassion, honest words and a bit of tough love I found right here at cpaptalk.com. Give it a chance. Take charge of it. Don't let the mask, the diagnosis, or anything else intimidate you. Also don't let anyone dissuade you from trying to find something better, cheaper, less complex, more elegant or whatever! That's what invention is all about! Just keep in mind that there is an effective treatment ready for you now if you need it.

As for the girlfriend who rejected the friend of yours who had a CPAP machine...she's pretty shallow and has very little imagination or compassion. Either that or she was intimidated by his six foot hose. (sorry, the hose thread was a bad influence on me )

[bearded_two]

I believe that "Amir, Gam im zeh nenatseach." is either Yiddish or Hebrew -- possibly machine translated.

[M.D.Hosehead]

I've noticed, not only on this thread, members calling xPAP a "gold standard" treatment for OSA. This isn't quite right. The gold standard treatment for OSA is a permanent tracheostomy. Here's why:

1. Effective in 100% of cases
2. Immediate, total efficacy (the first night)
3. Easy adjustment (to sleeping with tracheostomy)
4. No apparatus needed; nothing to buy, clean, leak, adjust, wear out, or replace
5. No followup visits; the problem is solved

Plus, it's a relatively simple, low-risk surgical procedure, and can be done with local anesthetic.

However, it's unacceptable for most people because:

1. YOU CAN'T TALK without first plugging the hole in your throat.
2. Cosmetically, it's worse than Darth Vader and it's on display all day; you can't even wear normal clothes.

I think it's correct to say that since OSA was discovered round 1970, there's been a continuous effort to find a treatment that approaches the efficacy of tracheostomy but is reasonably tolerable. xPAP is the best compromise so far, but one hopes there will be better treatments. (I'm not trying to slight orthodontic devices, but after all this is a xPAP discussion board.)

[brazospearl]

Amir,
Welcome to the forum! As you can see, we can be an opinionated group, but don't let that scare you off. You are in the wonderful position of being a medical doctor AND a person with OSA. Think of what a blessing you can be to patients who need treatment! Please read all you can about the different therapies available, and choose the one that will be most effective for you. Currently, most of us on this board are willing to trade sleeping with a machine strapped to our faces every night for the improvement we see in our health and our lives. That doesn't mean we'd be opposed to something else--so put your thinking cap on and get to it.

[Janknitz]

Did we scare Amir off? Haven't seen him around.