A Reply To Leejgbt and Rooster

[leejgbt]

Mars,

You stated that you monitor your therapy in conjunction with your doc, correct? This is what I advocate. If your doc wants you to adjust your settings I'm all for it. I am against self dosing without the advise of your doc or worse advising someone else on their settings when you are not the doc. I think I have been very consistent about this.

Credentials are brought up a lot on this site and I find this interesting given the hostility towards the professionals. My question is would it make a difference as to whether you would heed the advice given? I agree with autpapdude on this one as people's minds are already made up. Your opinion just lets everyone know what camp you are in creditials or not.

People here do like to be educated so my goal is to provide data. Then you can make up your own minds. You already know my opinions.

[cinco777]

leejgbt wrote

I am against self dosing without the advise of your doc or worse advising someone else on their settings when you are not the doc. I think I have been very consistent about this.

Please provide data that supports your opinion (quoted above). Thanks.

[Wulfman]

Mars,

You stated that you monitor your therapy in conjunction with your doc, correct? This is what I advocate. If your doc wants you to adjust your settings I'm all for it. I am against self dosing without the advise of your doc or worse advising someone else on their settings when you are not the doc. I think I have been very consistent about this.

Credentials are brought up a lot on this site and I find this interesting given the hostility towards the professionals. My question is would it make a difference as to whether you would heed the advice given? I agree with autpapdude on this one as people's minds are already made up. Your opinion just lets everyone know what camp you are in creditials or not.

People here do like to be educated so my goal is to provide data. Then you can make up your own minds. You already know my opinions.

I've resisted posting to some of these threads.......until now.

You have to take into consideration that many of the people who end up on these forums have been:
* Turned loose to fend for themselves
* Left/kept in the dark by the people who put them on these contraptions. (with little or no instructions or help)
* Treated like less-than-intelligent individuals.
* Caught in the maze of doctor/DME/insurance paperwork and terminology "merry-go-round".
* Given little or no psychological support with regard to acceptance of this new condition they now have to deal with.
* In adversarial relationships with their "medical professionals". (me)
* In the situation where they never even met their doctors.
* Wrongly prescribed pressures and equipment.
* Without insurance, jobs or financial assistance.
* And, other situations too numerous to mention.

In an "ideal" situation, what you say and promote should be.....well......"ideal". However, those instances are few and far between from my readings for the last 4 1/2 years. A large number of the people you find on the Internet support forums are, for the most part, highly intelligent and computer-savvy individuals and professionals in their own right. There are many from high-tech and professional backgrounds and who have a good many credentials in their respective fields. In other words, they're not "dummies". And, to be treated as such by others from the medical professions is pretty offensive to them. This ain't "rocket science"......it's just a matter of learning new jargon and the basics of how this therapy works.....when we have the proper tools......information, data-capable machines and software......then making whatever adjustments are needed for achieving the best therapy possible.

I never have nor ever will make apologies for trying to help those who come to this forum looking for assistance.

Now you know MY opinions.

And, to answer your question......"No".....not from the doctor I encountered.

Den

[roster]

Aw, Rooster, you are soooo baaaaaaad!

Oh come on Slinky. I have known for a long time that the meaning of your UserID has nothing to do with your avatar.

[Slinky]

Yeah, well, THOSE days are over. They were over 3 months after I quit smoking and gained 16 lbs in those 3 months. All (now) 19 lbs in the GUT. Not all over, just in the gut area. I HATE IT!!! That FLAB is so .... repulsive. To add insult to injury I'm eating LESS than I EVER have!

They've found some nodules on my thyroid and I'm scheduled for a guided ultrasound FNA next Monday. I HOPING against hope, its the nodules responsible for my not being able to drop this damn gut flab. Odds are against it as my thyroid blood work was all w/in normal ranges. *sigh*

Here's another good laugh for you. They give you a local anesthetic in the throat before the FNA. So I told them I was on a bi-level PAP for OSA and asked did they need to examine it before. They said I wouldn't need it. Say what? Apnea is a closing off of the throat due to the muscles relaxing during sleep and/or the tongue dropping back in the throat. The throat and tongue muscles won't be relaxed as a result of the local anesthetic in the throat???? I'm taking my VPAP Auto - JUST IN CASE.

[roster]

Good luck with that. Let us know how it goes. I am sure they will monitor your breathing closely.

[PST]

Here's another good laugh for you. They give you a local anesthetic in the throat before the FNA. So I told them I was on a bi-level PAP for OSA and asked did they need to examine it before. They said I wouldn't need it. Say what? Apnea is a closing off of the throat due to the muscles relaxing during sleep and/or the tongue dropping back in the throat. The throat and tongue muscles won't be relaxed as a result of the local anesthetic in the throat???? I'm taking my VPAP Auto - JUST IN CASE.

I've had this done. To the best of my recollection, I really couldn't have been masked and using CPAP. The tech was telling me when to breathe and when to swallow. I went so long being told not to swallow that I started to fear drowning. The needle action, both anesthesia and aspiration, seemed much further down the throat than the tongue. In any event, no part of me felt relaxed, that's for sure.

[Slinky]

Yeah, I know I couldn't use the PAP and mask during the procedure but how long after does the local anesthetic wear off?

That part about holding your breath and swallowing is a concern as w/COPD I can't hold my breath for long, I've been somewhat concerned about not being able to stifle a cough!!!

Mostly I'm GRUMPY. I have to shower the night before AND the morning of the procedure w/anti-bacterial soap and then go out after that nice hot morning shower into a nasty cold frosty 7 AM Michigan morning for a freaking 9 AM procedure. Actually 6:30 AM as I have to be at the hospital at 7 AM. Grrrrrr. I do NOT do mornings well. I'm usually awake and up at that hour BUT I'm not one to leave the house before 10 - 11 AM.

[mars]

Mars,

You stated that you monitor your therapy in conjunction with your doc, correct? This is what I advocate. If your doc wants you to adjust your settings I'm all for it. I am against self dosing without the advise of your doc or worse advising someone else on their settings when you are not the doc. I think I have been very consistent about this.

Credentials are brought up a lot on this site and I find this interesting given the hostility towards the professionals. My question is would it make a difference as to whether you would heed the advice given? I agree with autpapdude on this one as people's minds are already made up. Your opinion just lets everyone know what camp you are in creditials or not.

People here do like to be educated so my goal is to provide data. Then you can make up your own minds. You already know my opinions.

Hi Leejgbt

Thanks for replying, but once again your post is "not quite right".

You say - You stated that you monitor your therapy in conjunction with your doc, correct?

Well, no. What I said was -

Quote - My current sleep doctor runs what may well be one of the best sleep clinics in the Southern Hemisphere. He is happy for me to monitor my progress, and make adjustments as needed.

It may be that you are reading through a filter of your own belief system. That you would like me to be monitoring my therapy in conjunction with my Doctor. But I am not. I am monitoring my therapy - full stop.

Once again I must ask you not to make false analogies.

You say - Credentials are brought up a lot on this site and I find this interesting given the hostility towards the professionals.

Even a brief reading of relevant posts would indicate that hostility towards professionals has nothing to do with their credentials as such, and everything to do with how they treat, or do not treat, their patients.

Also, I must ask you to stop using the term self-doser. It is derogatory. It is an emotive put-down that might go well with your colleagues, but loses you respect here.

Finally, Wulfman has also replied to your post, far better than I have. Take seriously what he says, take it on board, ask questions about it if you wish, but what he has said cannot, in my view, be faulted.

Cinco777 also asked a relevant question, and I hope you will reply to it.

cheers

Mars

[Kiralynx]

Yes Kira - you're right once again with your idiotic 'paint everyone with the same brush' statements regarding how useless DMEs are. Get a clue. With your know-it-all attitude I'm not surprised your DME didn't want to initiate contact with you lol. Yikes.

Actually, I don't paint everyone with the same brush, guestie-pestie. There's one brick and mortar DME locally that I would be willing to work with... but they aren't covered by my insurance. If a company is not covered by my insurance, I'm not going to pay inflated prices when I can order on-line and have my supplies within two days, compared to 7-10 business days.

It's interesting that you should comment on my knowledge -- I'm a researcher and a writer. It's my business to "know it all." It's what I get paid to do.

I've been amazed at the number of professionals participating in this Forum, willingly sharing their experience and knowledge. There are engineers, nurses, sleep technicians, doctors, psychologists, lawyers, teachers, and on and on.

We do not stop being professionals because we have OSA. For sleep doctors and DMEs to try treat us as if we are misbehaving children is unacceptable.

Keep up the DME bashing. You assume there is some type of golden DME behavior book that, magically, everyone will follow to your liking - or else. You act like all DMEs are the same. When in God's name are you simply going to realize that, like all businesses, some suck and some excel. MOVE ON!

I have worked part-time in customer service for over 30 years. I know what kind of service should be provided, regardless of what sector of the retail market is represented. 'Cause that is exactly what a DME is: a retail market.

If you want to take your own treatment into your own hands, go ahead! Self-titrate until you're blue in the face for all I care. Wrap moleskin and panty hose around your face. Leejgbt is correct - for the anal-retentive person that likes to tweak his AHI from 1.4 to 1.6 using software, that is fine. All you get from online companies is a cheap price, distorting the real cost of this therapy. No one will follow up with your doctor or worry about your other side health issues. People that work with their doctor and DME have higher compliance rates.

Gotta laugh. You never even read my posts where I spoke of working with my RT and my doctor -- and their decisions were based on the data I provided from my research. My preference is to work with my medical specialists, not in an adversarial relationship.

I've never used moleskin or panty hose.

And, another funny thing -- I've had more follow-up from CPAP.COM than I have from my brick-and-mortar DME. B&M didn't even contact me on my one year anniversary. I'll be interested to see if they do so once the 13 month rental contract expires.

As for other side health issues, well, I've got a really excellent oncologist and gynecologist and PCP. This team coordinates on the direction my health care will go. It's up to the DME to follow the lead of my medical team. And my medical team follows my lead.

[rested gal]

Speaking of sleep professionals, there are several RPSGT sleep techs who go the extra mile to help people on this board or in chat. Besides helping people here, they are no doubt helping many more who would never find their way to any message boards. I'm thinking of StillAnotherGuest (aka "Muffy") and superjet and stage0, in particular. Good guys.

[curious2]

Two points to make:

I will attempt to have a "guest" RT give the risks of changing pressures without the advice of a sleep doc. Some of the negative outcomes, etc.

It is against FDA regulations for DME companies to change settings without an order. It is ill advised for the patient to do the same, but not illegal. The people here that change their settings I hope are doing this in conjunction with a sleep physician. Would you change your blood pressure med dosage without getting your doc's opinion? Would you know all the risks? If you feel better afterwards does it make you right or just lucky?

In my opinion, it's much more dangerous to let an APAP range freely than it is for the patient to vary the pressure manually by 1 or 2 cm at a time, carefully monitoring the results. And, before anyone says a sleep doctor would not prescribe an APAP with a 6-18 range, that's what mine did. Her reasons were even sound: I had not slept deeply or long enough during the sleep study to allow them to figure out what pressure I needed. (The second sleep study, a year later, wasn't any better.) With software (Silverlining), I was able to monitor the results for myself, and eventually figured out the particular pressure (or narrow range) that gave me the best results. I've had to adjust it upwards a bit over the years (result of weight gain), but am quite sure that I'm getting pretty good results (last night: AHI 1..

Here, we're talking about air to breath, not which chemical formulation best effects someone's blood pressure. I don't know why anyone would find it surprising that patients using monitoring software can find the optimum pressure and other settings for themselves. I believe I recall a study years ago in which OSA patients were allowed to adjust the pressure settings of their CPAPs up or down based on how they felt they were doing, and actually did quite well in fine tuning the titration. And, that was without the benefit of recording APAPs and software...

I'm not putting down professional sleep doctors and DMEs. It's just that, given the reality of how our medical system works, sporadic stabs at titration in once-yearly sleep studies (if even that) are unlikely to produce the results that a hands-on OSA sufferer, willing to learn, can achieve for himself/herself through daily monitoring and adjustment. Are there circumstances in which a sleep doctor/DME can do a better job than the patient? Sure. If the patient is too feeble or too out of it to take control of the process, an outside professional is the only reasonable option. And, if it were a perfect world, where the patient had a live-in, hands on sleep doctor to continuous monitor and adjust treatment, I'm sure that approach would also be the way to go (although it didn't work out too well for Michael Jackson, poor guy).

[rested gal]

I believe I recall a study years ago in which OSA patients were allowed to adjust the pressure settings of their CPAPs up or down based on how they felt they were doing, and actually did quite well in fine tuning the titration. And, that was without the benefit of recording APAPs and software...

You recall correctly.

Link to a study that concluded, "yes."
"Can Patients with Obstructive Sleep Apnea Titrate Their Own Continuous Positive Airway Pressure?"
http://ajrccm.atsjournals.org/cgi/reprint/167/5/716

[two]

I believe I recall a study years ago in which OSA patients were allowed to adjust the pressure settings of their CPAPs up or down based on how they felt they were doing, and actually did quite well in fine tuning the titration. And, that was without the benefit of recording APAPs and software...

You recall correctly.

Link to a study that concluded, "yes."
"Can Patients with Obstructive Sleep Apnea Titrate Their Own Continuous Positive Airway Pressure?"
http://ajrccm.atsjournals.org/cgi/reprint/167/5/716

Even better than I remembered:

"This study demonstrates that patients with OSA are capable of self-titration of CPAP treatment at home.... There was no clinically significant difference in any measured outcome between the two CPAP treatment modalities."