Trying to help a friend...

[quiescence at last]

so, you'll still be able to tell a lot about her breathing and about the consistency of her AHI and maybe more even if she is on a straight 4 cmH2O. obviously it would be better to have her on titration even for a little while.

also, if you want to walk her husband through it, you can have him make a copy of her data on an new SD card. then he just puts her card back in, and he sends you the copy. (even better would be a copy in the cloud, maybe someday.)

but, probably simpler is better.

anyway, the padding is a great idea. just sending to and from my doc 30 miles away, I made a properly sized index card envelope with two Kleenex layers inside as padding. Then I just tossed it in the regular envelope and placed a forever stamp on it.

QAL

[TheManseHen]

Thanks All,
I agree about her not wanting to burn bridges with local doc due to remoteness and distance to travel otherwise. He hasn't followed up with her in a year so I don't think he's going to care if she changes things up a bit.

She has some type of Phillips Respironics with an Auto Flex, she said it was supposed to be new when she got it a year ago or so. It's going to be a learning curve to walk her through new settings as I have a Resmed machine.

From what I've read, it is a machine that can do either straight C-pap or Auto. I'll read the manual once I have her model info, and see if I can talk her through a straight auto. Or when I get her data, I can see what her highest ever has been and get her a nice parameter.
I'm hopeful for her if she can just get some baby steps behind her. If she can't get her sleep managed, I'm concerned more for her overall health. Sleep is such a basic platform for all types of healing.

Will let you know what I find out.

Susan
AKA Manse Hen

[OpalRose]

Thanks All,
I agree about her not wanting to burn bridges with local doc due to remoteness and distance to travel otherwise. He hasn't followed up with her in a year so I don't think he's going to care if she changes things up a bit.

She has some type of Phillips Respironics with an Auto Flex, she said it was supposed to be new when she got it a year ago or so. It's going to be a learning curve to walk her through new settings as I have a Resmed machine.

From what I've read, it is a machine that can do either straight C-pap or Auto. I'll read the manual once I have her model info, and see if I can talk her through a straight auto. Or when I get her data, I can see what her highest ever has been and get her a nice parameter.
I'm hopeful for her if she can just get some baby steps behind her. If she can't get her sleep managed, I'm concerned more for her overall health. Sleep is such a basic platform for all types of healing.

Will let you know what I find out.

Susan
AKA Manse Hen

Hi Susan,
Look at my profile, I think she may have the same machine as I have. I can probably help if you have questions. Do you have the Clinical Manual?
OpalRose

[truckerdad57]

Susan,

Getting into the clinical menus of either a CPAP or APAP and adjusting the settings is a controversial topic. This board is strongly on the side of self-empowerment about setting your own pressures and settings.

But... when you get into helping a friend set the pressure settings of their machine you are getting into crossing the line between patient empowerment self help advise and practicing medicine without a license. There are reasons the forums have a disclaimer at the bottom about medical advise.

Too high a cpap pressure can cause problems like aerophagioa (aka the burps and farts) where air is forced passed the epiglottis into the stomach. Or... too high a pressure can blow off too much Co2 causing central apnea where the brain forgets to tell you to breathe.

I would be very careful and make sure whoever is giving you advise has gone over the TOTAL medical history of your friend.

There are sleep apnea testing and treatment firms that specialize in truck drivers. They treat them but never see them. All the consultation and treatment modification are done by phone. Do some research about sleep labs in your area. Call them and explain your friends problems with travel and doctor phobia. Find an MD board certified in sleep medicine... or a good sleep lab RPGST RT or RRT that is willing to work with your friend and their problems.

Having a GP messing with complicate apnea issues might mess things up more than ever. On the other hand well intentioned lay advise might mess things up too.

I drive truck for a living. This advise might be worth exactly what you paid for it.... nothing.

Thanks for being concerned about your friend and doing what you can to help. Keep up the good work.

[TheManseHen]

Opal, I do have through the web. She probably has her guide too, though not a clinicians one. In the spirit of her own empowerment, though she is poorly, I think I will print out the clinicians for her and mail it to her so she can have it and do as she will with it.

Trucker, That is very good advise and caution and also some good info about the truckers docs.
I was going to ask my sleep Doc if he has any good advise as to how to proceed in her area....ie what does he suggest for homebound folk in rural areas?

This lady and her husband have similar views on life, death, personal responsibility etc, as do my husband and I, so I feel more comfortable with her than I might most, but I shall be sure to not press her to improve, or make changes etc but to see that she is taking some charge herself. That is important on all levels. And she did ask for help to start with.

I don't feel at risk getting her a humidifier that is a normal function of a working set up and helping her to understand how her machine works in general.

She knows she feels like crap. If I look at her info, at the very least I can tell her it looks like the crap feeling isn't all in her head and that she MUST try get some help somewhere.

Yes I note this board leans toward personal empowerment. I do as well, which is why I like the board so well. Not everyone is up to that, or interested in that. I've found in many areas of life, folk who are able to see their relationship with their doctor as one of informed consent and
as a co-operative one, get the best care and results, usually. I do not see Drs as gods, or money sucking scum. (Less sure about the DME owners...the techs can be great or not) Most doctors start out wanting to help. SOmetimes we get one's that don't work for us. Studies show for instance, that if you have a doctor you don't feel likes you, you are probably correct and you are generally best served to find one that you do feel likes you, for the sake of your care.

In the boonies, one doesn't always have a lot of options. That said when DH and I lived in the middle of nowhere Kentucky, I got great care because Docs from Lexington made the trip out there one or two days a week, and other docs were there working off school debt by agreeing to serve underserved areas.

Susan
The Manse Hen

[Sleeprider]

She has some type of Phillips Respironics with an Auto Flex, she said it was supposed to be new when she got it a year ago or so. It's going to be a learning curve to walk her through new settings as I have a Resmed machine.

From what I've read, it is a machine that can do either straight C-pap or Auto.

Susan, if your friend turns the machine over, she will see a number REF 550P or 560P. I'm pretty sure that's what she has. 4.0 is not an adequate pressure, and especially in CPAP mode. Changing that machine to Auto mode is really easy. The doctor's attitude in this case is just appalling.

It would be nice if a copy of the files on that card could be made. It is probably small enough to email. Good luck with your friend. Hope you get it worked out.

Tom

[OpalRose]

Susan,
It could be the good Doc doesn't know much about Sleep Apnea, and really isn't qualified to help her, so instead he acts like a jerk.
Sleeprider is correct in saying that a starting pressure of 4 is not adequate. I know from experience, my sleep doc. left my pressure wide open at 4 to 20. For the first couple weeks, I felt as if I were suffocating until I learned from people here what I needed to do. (Download sleepyhead, watch data for a few days, see where your pressure is most of the night, and watch the upper limit.
Then adjust the bottom number up to a point or two below where the AUTO CPAP is at 90% of the time. The top number can stay higher until she knows what pressure is needed to clear events.
Most important though is to get her data before making changes, and the machine needs to be set to Auto. I pray she can somehow get a humidifier, because that will make a hugh difference.

[quiescence at last]

Not sure why this would not help humidify - actually having a small-ish vaporizer set up in the room. I would think if the machine sucks in higher humidity it will send out more humid air.

[TheManseHen]

QAL,
I wondered that myself. Makes sense.

[Ghost1958]

Susan,

Getting into the clinical menus of either a CPAP or APAP and adjusting the settings is a controversial topic. This board is strongly on the side of self-empowerment about setting your own pressures and settings.

But... when you get into helping a friend set the pressure settings of their machine you are getting into crossing the line between patient empowerment self help advise and practicing medicine without a license. There are reasons the forums have a disclaimer at the bottom about medical advise.

Too high a cpap pressure can cause problems like aerophagioa (aka the burps and farts) where air is forced passed the epiglottis into the stomach. Or... too high a pressure can blow off too much Co2 causing central apnea where the brain forgets to tell you to breathe.

I would be very careful and make sure whoever is giving you advise has gone over the TOTAL medical history of your friend.

There are sleep apnea testing and treatment firms that specialize in truck drivers. They treat them but never see them. All the consultation and treatment modification are done by phone. Do some research about sleep labs in your area. Call them and explain your friends problems with travel and doctor phobia. Find an MD board certified in sleep medicine... or a good sleep lab RPGST RT or RRT that is willing to work with your friend and their problems.

Having a GP messing with complicate apnea issues might mess things up more than ever. On the other hand well intentioned lay advise might mess things up too.

I drive truck for a living. This advise might be worth exactly what you paid for it.... nothing.

Thanks for being concerned about your friend and doing what you can to help. Keep up the good work.

Sounds more like her Dr. is practicing medicine with a license he shouldnt have to me.
Showing a person the options on their machine, like auto trial, switching from cpap to apap. Where they can set their pressures, what methods have worked for you isnt practicing medicine.

It showing a person how to operate a machine. That Drs and DMEs want a secret squirrel decoder ring that only works for them doesnt play into it. There is flatly nothing illegal about teaching a person how to get into clinical settings or how use what is there.

And discussing how YOU got to your best pressures isnt telling them to set a certain pressure any more than discussing with someone what BP med worked best for you.

Nothing illegal about it and if you can find me a law in the U.S that says it is Ill leave this forum.

Im guessing also she has a PRS1 560 auto aflex. If so she can use the auto trial function to find her titration pressure which will transition to cpap check mode on its own after whatever time she sets with a min of three days possible.

That will titrate her better than a sleep lab as far a pressure goes.

She can then either opt to run straigh cpap mode at that pressure or switch to auto and pick a min to go with the titrated pressure.

Showing her the capabilites of her machine and how to enable and disable them isnt practicing medicine by any stretch of the imagination.