Getting Started and Startling the Doc

[D.H.]

... how did you determine your own settings? You posting implies that you did not have a titration study and might not have even had a diagnostic one.

Are you replying to the OP? Because the first line mentions the appointment was a followup to a sleep study.

The follow-up visit was for the OP's husband, not the O.P. I guess it's a bit complicated, but that's what it seems to say. My question for the OP was how she determined her own settings.

[Pugsy]

The follow-up visit was for the OP's husband, not the O.P. I guess it's a bit complicated, but that's what it seems to say. My question for the OP was how she determined her own settings.

She's been on ASV for years and years and did indeed have a sleep study and usual titration study way back when she first started therapy.
She's been a forum member for years. One only has to go back through some of her old posts and read a bit to figure it out.

[palerider]

... how did you determine your own settings? You posting implies that you did not have a titration study and might not have even had a diagnostic one.

Are you replying to the OP? Because the first line mentions the appointment was a followup to a sleep study.

The follow-up visit was for the OP's husband, not the O.P. I guess it's a bit complicated, but that's what it seems to say. My question for the OP was how she determined her own settings.

If you'd *READ* this forum more, instead of posting random demented crap... you'd KNOW the answer to that question.

[Kiralynx]

As someone about to start using a CPAP, this is definitely an inspiring story that motivates me to be as informed and empowered of a patient as I can be. Thank you for sharing!

Yes, and it was similar comments from then-experienced members of this Forum which inspired ME to become an informed and empowered patient -- 11 years ago!

[Kiralynx]

Good for you!!!

The best that could come out of this would be the doctor changing the way he deals with all of his patients.

One can certainly hope! Mind you, he wasn't a difficult person -- he had no problems ordering a sleep study when I told him I wanted my husband to have one, and why. He's just not used to dealing with educated and informed patients. (When he heard I was already on a machine, he asked what I had, and he actually recognized what an ASV was! Plenty of docs out there do not know the equipment!

[Kiralynx]

He wanted you to go to a particular DME! I smell a conflict of interest! That being said, I loved my first DME (who is no longer in the CPAP business) that I got through my sleep doc's office. The machine that I got was state-of-the art for that time (though a huge dinosaur now).

Yes. He is a doctor in the largest medical group in the state, and they, of course, have their own DME, and they want all their doctors to send scripts for equipment to their DME. But ultimately, it is the patient's choice as to which DME they go to. My original machine was state-of-the-art for 2008. It's a monster now. But it still works.

Moreover. how did you determine your own settings? You posting implies that you did not have a titration study and might not have even had a diagnostic one.

I had a full night diagnostic and a full night titration study, and even then, they got my pressures wrong. By reading my data, which I learned how to do here in this Forum, I figured out what they needed to be, talked to my doctor, and asked her to change the script. She was not a pulmonologist, but a pain doctor, so was less set in her ways. She was happy to write the script the way I asked her to.

For my husband, I sent him to the study with one of my spare masks which I had fitted to him, and a "brandy keg" chin brace (homemade, works better than a strap). When I heard they woke him up at a little over 3 hours (or more correctly, he woke up yelling that he couldn't breathe -- first time that's happened!) I knew his apnea was likely severe, and I didn't want to play the waiting on insurance and doctors game. My husband was exhausted all the time, frequently falling asleep in the car, always falling asleep in his desk chair in the evening. And his mom died of heart failure when she was only five years older than my husband is now.

From reading this Forum, I knew that, as I said above, a wide open APAP is 4-20. Again from reading this Forum, I knew that most people prefer a lower pressure on an APAP around 6-8, with a range on it of generally no more than 10 above the lowest pressure.

My ASV had an exhalation pressure (EPAP), and then a range in inhalation pressures (MinIpap and MaxIpap). I therefore set the EPAP and the MinIpap to 6, and then the MaxIpap to 16. I asked him to test it to see how it compared to the pressures he had during the treatment phase of his study. He said it was comparable.

I would have been happier if I could have located the card reader for the smart card in my old Remstar so we could evaluate better how effective the settings were for him.

As it turns out, my wild-ass guesstimate was right on the nose. The pulmonologist says either straight CPAP at 9 or APAP at 5-15.

In the meantime, while we're playing the waiting game in insurance and doctors, he's already getting therapy. He's already no longer falling asleep in his desk chair or the car. He's no longer being awakened three and four times a week with severe leg cramps. And he's generally more alert.

Since I have two of the old REMSTAR ASVs, a System One 950 ASV (which is now my travel machine), and a DreamStation ASV which I bought to have a current machine, I saw no reason why he should have to wait on getting relief from his exhaustion on the bureaucrats.

[Kiralynx]

I find the question of how aggressive to be with my sleep center and DME tricky at times. I don't live in a big city, so good and convenient options are limited.

So I find that sometimes I have to be really blunt, other times gently suggestive, and still other times simply creative.

Oh, and I immediately cancelled my relationship with my DME when they tried to manipulate me.

Our insurance sent us to Apria when I first started. The RT there (who left a few months later) was very good, and was the one who suggested the ASV for me, which I am very thankful for since it works extremely well for me.

I suffered with Apria for 5.5 years until our insurance changed, and I could transfer to my current DME. Apria never once got an order right the entire time. In fact, when I decided to change, they tried to tell me I could not change DMEs without the permission of my doctor and my insurance.

Apria couldn't be bothered to arrange for me to pick up a replacement humidifier chamber from their office in Atlanta while I was traveling. My current DME hand delivered a rental unit to me when my 950 was knocked off the night stand while I was traveling in north Louisiana. They were going to overnight it, and one of their people said, "I'm going up to that town tomorrow to see my son. I'll take it to her and save her the overnight shipping." With service like that, you can BET I will give them all the business I can!

[SleepySwiss]

As someone about to start using a CPAP, this is definitely an inspiring story that motivates me to be as informed and empowered of a patient as I can be. Thank you for sharing!

Yes, and it was similar comments from then-experienced members of this Forum which inspired ME to become an informed and empowered patient -- 11 years ago!

I fully agree with you, Kira. This forum empowered me to investigate my own sleep patterns, change the settings of the machine and most recently decide to switch from the Dreamstation to an Airsense. Without hand-holding from palerider, pugsy and many others, I would not have done that. And of course, sleepyhead and now oscar. Patient empowerment is powerful!

[Kiralynx]

I fully agree with you, Kira. This forum empowered me to investigate my own sleep patterns, change the settings of the machine and most recently decide to switch from the Dreamstation to an Airsense. Without hand-holding from palerider, pugsy and many others, I would not have done that. And of course, sleepyhead and now oscar. Patient empowerment is powerful!

It is very powerful -- which is why I decided to post about our experiences in getting my husband going.

He said that he slept so well during the treatment half of his study that he really didn't want to go back to his "normal" method, so when I suggested setting my original Beastie up like an APAP, he was perfectly willing to go with that until we can get him his own machine. He hasn't missed a night, either. His comment was, "It certainly helps having someone in the house who knows the details of this stuff!"

[zoocrewphoto]

My sleep doctor has sleep apnea, so he is actually understand how to use the machine, and cares about the full data, not just ahi and compliance. He also prescribes auto, full data machines to everybody.

When I got my machine in 2012, I found this group, and started looking at my data. My settings were spot on, so I didn't need to make changes. But it was very helpful to see the machine doing its thing and working for me. During that time, my mom mentioned that she had never felt that good with her cpap. She had an older machine with no data.

When I went backfor my followup, I had some printed graphs and summary data and a few questions. My doctor was very surprised. I think he was a little disappointed that he didn't get to show me how my ahi went from 79 to less than 2 (since I already knew), but he was very impressed that I had the data and was learning. He was pleased to hear about this forum, and he kept one of my printouts so that he could tell other patients where to get the software.

After my followup, I let my mom use my machine for two partial nights. I am a severe night owl, so I don't go to bed until 4-6am. So, the first night, I set my machine for a straight 10, which was my mom's prescription setting. She used it for 4 hours, and her ahi was 3.4. I uploaded the data and printed it before I changed it back and went to bed. I was startled to see her graphs. Her ahi was 3.4 which was considered okay (though we know better here), but she had clusters of events that were all 30 seconds or longer. One was 62 seconds long. She was clearly not getting ideal treatment. She called and made an appointment with my sleep doctor for the next week. A couple nights after the first night, I set the machine for 10-13 to see what the machine wanted to do without letting it go high enough that it might bother her (I wasn't sure if it would or not). She used it for about 4 hours, and I printed the graphs. When we went to the appointment, we had her previous sleep study summary and the two reports from my machine. The sleep doctor looked it all over, shook my hand, and prescribed a new auto machine for her with it set for 10-15. She sleeps so much better with it, and I can check her data on occasion. And since we both use the same model machine, I have a backup that works for either of us. And we've needed to do that, too.

A couple years ago, my brother was finally convinced by his wife to get his cpap machine out of the closet and start using it. But he was having trouble with it. It was right before Christmas. He told me his machine, so I got the clinician's manual, and after we did our Christmas Eve dinner and event, we had cpap class. I uploaded his data, and everybody (him, his wife, my parents, my sister) all get a lesson about sleep apnea, cpap machines, data, etc. I also taught him how to adjust the settings on his machine, .,etc. He uses a Dreamstation (my mom and I have Resmed machines), but I learned so much here, I knew how to get the manual, I knew the leak rates are different, the pressure graph looks a bit different, etc.

I really appreciate that this forum helps people directly, but also helps people help other people.

[D.H.]

[ . . .

In the meantime, while we're playing the waiting game in insurance and doctors, he's already getting therapy. He's already no longer falling asleep in his desk chair or the car. He's no longer being awakened three and four times a week with severe leg cramps. And he's generally more alert.

Since I have two of the old REMSTAR ASVs, a System One 950 ASV (which is now my travel machine), and a DreamStation ASV which I bought to have a current machine, I saw no reason why he should have to wait on getting relief from his exhaustion on the bureaucrats.

I'm glad to hear that he's getting therapy now, and that he's already getting relief from his symptoms.

I'd like to see the day where instead of making patients (at least those with the most severe cases) wait for the equipment, they are sent home with loaner equipment, They would be advised they were given the loaner because it's too dangerous to sleep even one night without it! I think that would increase compliance, as it will wipe out the impression that the sleep center doesn't take this seriously.

[Kiralynx]

I really appreciate that this forum helps people directly, but also helps people help other people.

Isn't THAT the truth!

[Pugsy]

We all pay it forward in various ways....it's just what most of us have in our nature.

[Kiralynx]

I'm glad to hear that he's getting therapy now, and that he's already getting relief from his symptoms.

I'd like to see the day where instead of making patients (at least those with the most severe cases) wait for the equipment, they are sent home with loaner equipment, They would be advised they were given the loaner because it's too dangerous to sleep even one night without it! I think that would increase compliance, as it will wipe out the impression that the sleep center doesn't take this seriously.

I genuinely think the idea of loaners is a great one. I remember all the h-ll I went through, getting appointments, getting my sleep study print out, waiting on Apria to get my machine. My study was on 2008-09-11. I didn't get my machine until 2008-10-28. And in the meantime, I was dealing with unnecessary pain from low oxygen levels, and on-going tiredness which wasn't helping with healing from my cancer surgery one bit. That's another reason I wanted my husband to start ASAP.

One thing I am glad of is that my current DME says the Auto-CPAP is their most popular machine -- they had 6 Dreamstations and 6 Resmeds in stock yesterday. So once the doc gets around to sending them the script, we should be able to pick his new machine up the day after the insurance approves it.

[Kiralynx]

We all pay it forward in various ways....it's just what most of us have in our nature.

Yes. I know that I would likely have been a CPAP failure if not for this Forum. Doesn't matter how fancy a machine you have -- if it isn't set right for your needs, it's useless. And if you're dealing with so-called professionals who do not know what they are doing (or worse, don't care), it's easy to see why people might give up.

We live in our bodies. No one knows them better than we do. We may consult a medical practitioner for advice, but no one, and I do mean NO ONE tells us what we can or cannot do.

That includes getting the information we need to make informed decisions about our health!