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#21
Can I just say I think you're doing a fantastic job caring for your mother.

I also sympathise with her finding out at 83 that she needs some kind of therapy on top of everything else thats just happened. Its almost like "what else can go wrong now?"

I hope it all gets sorted out soon !
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#22
(11-13-2014, 04:44 PM)PaulaO2 Wrote: Well, it's not exactly hereditary since it is not a genetic disorder. It is more like the body type and throat shape that makes it "hereditary". For example, my biological paternal parent has a small mouth and throat which I "inherited". This, plus the body type (obese pear shape) I inherited from my mother, made me ideal for sleep apnea. The paternal parent has been diagnosed with sleep apnea, had major surgery for it (unsuccessful of course), but I don't know if he uses an xPAP.

So if your mother has it but you are physically structured more like your father, you may be in the clear. But it would be a perfect thing to get the sleep study done! If nothing else, you can, ahem, sleep better knowing one way or the other.

Thanks Paula02; quite correct.
Evpraxia in the Pacific Northwest USA
Diagnosed: 44 AHI when supine, O2 down to 82%
Treated since 20 Sept 2014:: 0.7 AHI, Settings 7-15, EPR on Full Time at Level 3
Better living through CPAP/APAP machines!
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#23
(11-13-2014, 01:41 PM)suedanem Wrote: Thanks Evpraxia, I need all the encouragement I can get. My normal nature out in public is somewhat meek and reserved. For this situation, I need to be the mouse that roared! I do have my mom's SpO2 report to give me encouragement too.

One trick I sometimes use is to be nauseatingly polite and sweet. Try to kill them by being so sweet you put them into a diabetic coma. It really unnerves people sometimes. Just don't back down an inch.

(11-13-2014, 01:41 PM)suedanem Wrote: I also appreciate the info that sleep apnea is hereditary, Evpraxia. As soon as I get mom's problems settled, I will have a sleep study done. And, I'm working on my sister to have a sleep study also. (She lives in the North West also.) She has a terrible time sleeping. She says, "I could never keep a CPAP mask ON. When I wake up in the morning, I toss and turn so much my sheets are in knots." Well, maybe if she could BREATH properly, she wouldn't toss and turn!

A sleep test may be a good idea. There are some online questionaires you can take. You can also get a recording pulse oximeter yourself for around $100 and see what your own O2 concentration does.

A few warnings, though. You can have severe sleep apnea, but never show an O2 drop because you wake up enough to not drop your O2. The disturbed sleep pattern and stress can still harm your health.

Also, be sure to get a RECORDING pulseox, such as the CMS-50D+ (note the plus, the CMS-50D won't record.) Supplier 19 on the supplier list is one reputable seller.

Just because the pulseox doesn't show problems doesn't mean you don't have sleep apnea. Also, they sometimes get some bad readings and may show something like 10% oxygen. Look at the graphs for the pulseox. If your O2 drops from 90% down to 10% in a few seconds or jumps back up quickly, it's a false reading.


Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
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#24
You are absolutely right. Mom has been through the wringer. And, yesterday Chase Bank called and said they suspected fraud charges on mom's credit card. And, they were right, someone got her card number somehow (mom's card is still in her possession) and tried to use it to get gas in a small town about 500 miles from where we live. Chase figured out that she probably couldn't have used it in our small town pharmacy today and then managed to use it for gas 500 miles away less than 30 minutes later.

Here's the update on mom and Lincare:

First, mom's doctor called at around 5:30 pm and said that she had been talking to a pulmonologist (ok, I probably didn't spell that right!) about mom. The PCP told us mom has both obstructive apnea and central apnea, and, given her heart problems too, a more involved sleep study is called for before she gets some type of machine.

Mom REALLY doesn't want to do a sleep study in a hospital, but from what I have been reading about heart problems and sleep apnea, I think it's the best thing. And, besides, we don't have to deal with Lincare for a while longer.

Then, less than five minutes after the PCP hung up, the gal at Lincare called. She said that she must have done a terrible job of explaining what was available and that when she WASN'T talking about the Elite, she was talking about the ResMed Autoset! And also, she was so use to saying S8, S9, it just came out as S10 when she meant A10!

So, I told her to put everything on hold as mom's doctor decided on a formal sleep study in a hospital. She was very nice to me and I was very nice to her. BUT...I know darn well, I cornered her. She did say the S10 ELITE. Not just once, but the second time I called her the next day too.

But. whatever happens now, I think I have made my position clear: I won't allow a DME to treat me like a puppet on a string.

Thanks everyone for all your help.
Sue
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#25
(11-13-2014, 09:07 PM)suedanem Wrote: You are absolutely right. Mom has been through the wringer. And, yesterday Chase Bank called and said they suspected fraud charges on mom's credit card. And, they were right, someone got her card number somehow (mom's card is still in her possession) and tried to use it to get gas in a small town about 500 miles from where we live. Chase figured out that she probably couldn't have used it in our small town pharmacy today and then managed to use it for gas 500 miles away less than 30 minutes later.

Here's the update on mom and Lincare:

First, mom's doctor called at around 5:30 pm and said that she had been talking to a pulmonologist (ok, I probably didn't spell that right!) about mom. The PCP told us mom has both obstructive apnea and central apnea, and, given her heart problems too, a more involved sleep study is called for before she gets some type of machine.

Mom REALLY doesn't want to do a sleep study in a hospital, but from what I have been reading about heart problems and sleep apnea, I think it's the best thing. And, besides, we don't have to deal with Lincare for a while longer.

Then, less than five minutes after the PCP hung up, the gal at Lincare called. She said that she must have done a terrible job of explaining what was available and that when she WASN'T talking about the Elite, she was talking about the ResMed Autoset! And also, she was so use to saying S8, S9, it just came out as S10 when she meant A10!

So, I told her to put everything on hold as mom's doctor decided on a formal sleep study in a hospital. She was very nice to me and I was very nice to her. BUT...I know darn well, I cornered her. She did say the S10 ELITE. Not just once, but the second time I called her the next day too.

But. whatever happens now, I think I have made my position clear: I won't allow a DME to treat me like a puppet on a string.

Thanks everyone for all your help.
Sue

I wouldn't worry about the use of the term "S10." Quite a few people have been using that name as the name for "the next version" before the AirCurve 10 was anounched. I think saying "A10" is a better idea.

Your doctor could probably find out all she needs to know from the data the A10 AutoSet records and some trial and error, but doctors have a bias towards in-lab $leep te$t$. In some sense, this isn't a bad thing, because the in-lab PSG gives more info. It is rougher on the patient, and does have the problem that the patient may not sleep well in the lab and you only get data for one night.

You could probably just get the A10 AutoSet, try it at home, and figure out whether she needs a more complicated machine for less money than another sleep test. She can read the results and make changes by using the SD card and/or the wireless modem. If you can't figure things out with the A10 and looking at the data the machine records, you can still go get another study later.

However, it's probably not worth fighting the doctor on this because she's not clearly wrong on this and apparently, she IS trying to do this right, even if she may not be doing it the "best" way. If you challenge her godhood, she may basically quit trying and just go through the motions.
Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
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#26
That should be fine Sue, hopefully they'll get her tested without delay. The only thing that somewhat concerns me is that sometimes the docs in their wisdom having done an in-hospital sleep test think they should just order a fixed-pressure answer for the patient. Wouldn't that be a bummer?
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#27
(11-13-2014, 10:18 PM)archangle Wrote: I wouldn't worry about the use of the term "S10." Quite a few people have been using that name as the name for "the next version" before the AirCurve 10 was anounched. I think saying "A10" is a better idea.

Your doctor could probably find out all she needs to know from the data the A10 AutoSet records and some trial and error, but doctors have a bias towards in-lab $leep te$t$. In some sense, this isn't a bad thing, because the in-lab PSG gives more info. It is rougher on the patient, and does have the problem that the patient may not sleep well in the lab and you only get data for one night.

You could probably just get the A10 AutoSet, try it at home, and figure out whether she needs a more complicated machine for less money than another sleep test. She can read the results and make changes by using the SD card and/or the wireless modem. If you can't figure things out with the A10 and looking at the data the machine records, you can still go get another study later.

However, it's probably not worth fighting the doctor on this because she's not clearly wrong on this and apparently, she IS trying to do this right, even if she may not be doing it the "best" way. If you challenge her godhood, she may basically quit trying and just go through the motions.

We have a complicated situation, at least, for us. We live in a small mountain town where there are no specialists. The doctor directing all of this is a GP.

To go to mom's cardiologist or other specialists, we have to drive over a mountain pass. It is at least an hour drive at the best of times. And, as I mentioned, I'm not the healthiest caretaker ever. I'm 62 and have RA(Rheumatoid Arthritis). Driving down to "the valley" has a tendency to tire me out for at least two days.

We are going to have to make the same drive to do the sleep study. (And, I will have to find a motel that will accept large dogs plus take a couple of days off work). This a.m. mom said she didn't want to do the sleep study. Her doctor said, last night at 5:30, that just going ahead and using an APAP could possibly make things worse because mom had both central and obstructive apnea. (Can someone make a comment on this possibility?)

However, she did give mom the choice to use the APAP for a while and see how that works for her. Frankly, I'm not that sure of mom's GP's expertise. She said she decided on the sleep study after talking about mom to a respiratory therapist. I don't know if she has what it takes to be able to look at the A10's data and figure out what's what. We went with the sleep study last night because we hadn't had a chance to think about it. One thing about this sleep study, it DOES have a pulmonologist overseeing mom's treatment.

It would be wonderful if we could wait till late spring and the roads and mountain passes are better. What do ya'all think? I don't think mom's doctor would get bent outta shape over this decision. She has to deal with the roads and weather too.
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#28
Sue, it's hard for us to make a call on this because we aren't docs, and we don't have your mother's results in front of us. So anything I say I hope you will take with a disclaimer.

I understand living remote. I lived in the mountains of Colorado for many years, and this time of year it could be very interesting to commute about. So I get that.

I also get that the GP is making her best decisions without being particularly trained in sleep apnea. I get that.

..and I get the "safe" medical answer for the RT to have given is to have the patient come in for a complete sleep test. That's the safe call, and I get that, although I don't believe a nice comfy cpap machine can actually "make things worse." Stress from having to go to the hospital for a sleep test in crappy weather could make things worse.


But......... If it were my mom, or my wife, or my doggie I would get the machine first prescribed without further delay. I would install the Sleephead software so I could monitor the results each day, and I would tuck mom, my wife, or my doggie into bed nice and warm and kiss them goodnight.

Once a few days of good therapy go by, then results can start to mean something. Keep us posted when that happens and we can opinionate some more.

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#29
Thank you, thank you, r_t. I just got off the phone with the nurse at mom's doctors office. We specified that we DID want to go ahead with the ResMed Autoset while waiting for the third sleep study. Who knows how long that's going to take to set up, and if there happens to be severe weather at the time of the appointment, we aren't going to risk our lives to get over the pass. So, at least we are doing SOMETHING.

It's going to take at least a week to get her APAP equipment, but at least Lincare will bring the APAP machine to our house and show us how to use it.

I will keep the board updated on what happens. Thanks once again.
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#30
I agree with Retired_Guy - I don't see how an APAP could make things worse, but I am not a doctor either.

Definitely get the SleepyHead software loaded as this will allow you to see the apneas, when they occur and all kinds of other stuff.

I realized there has been no discussion of heated humidifiers, hoses and masks yet; and they make a HUGE difference in how the therapy works. Some people really want want/need a humidifier and some don't. My husband and I really NEED the heated humidifiers on our APAP as we heat the living room with propane and the bedroom is unheated. It is Wonderful to be able to breath warm air instead of 50 degree F air.

The masks: there is a huge selection of full face masks, nose masks and nasal pillows. One of the vendors, Supplier #1 (CPAP) on the Supplier List, has a great help section on machines and masks. They have youtube videos that show how they are put on and used. My suggestion would be to have your DME bring along all of their trial masks and see what fits best for your mom.

My husband & I both use the ResMed Swift LT (mine is the "For Her") nasal pillows and the intentional mask leak is a bit annoying as it is a definite stream of air - I try to think of it as a mountain breeze to make it pleasant and more acceptable. I plan to try the ResMed P10 nasal pillows when I am next due for a mask replacement. See the vendor #1 on the supplier list for information on the P10.

Hoses: really not that much in the way of choices - heated or plain. I have the heated hose and Love it; my hubby has the plain hose and is not worried about getting a heated hose; so there you go. However, if your mom needs oxygen that adds a wrinkle to the choice. Others can contribute more than I can, but from I have read it is best to have the oxygen connection at the machine end rather than the mask end. This means only one hose to deal with from the machine to the mask.

Long post, sorry about that.

This is a hard journey for you; hang in there and let us know how things go.
Evpraxia in the Pacific Northwest USA
Diagnosed: 44 AHI when supine, O2 down to 82%
Treated since 20 Sept 2014:: 0.7 AHI, Settings 7-15, EPR on Full Time at Level 3
Better living through CPAP/APAP machines!
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