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Re: Last time you've seen any sleep professional? (poll)
Posted: Sun Jan 29, 2012 12:37 pm
by chunkyfrog
Technomom:
Have heart. I can understand an employee (or former employee) of a DME having to take a cut in pay or hours; (really the economy)
wanting to look for someone to blame--finding this forum--and seeing it as a threat!
Her attacks are only a sign that we are SUCCEEDING!
The sheer numbers enrolled here; as well as an increased number of new apnea patients
demanding full data shows that at least a few people believe we are making a difference.
It's too bad they do not all take that doctor oath seriously.
---Or maybe they never read it?
Re: Last time you've seen any sleep professional? (poll)
Posted: Sun Jan 29, 2012 2:06 pm
by ChicagoGranny
Muse-Inc wrote:Lizistired wrote:Back on the original topic, I am trying to compile questions for my sleep doc follow up.
The only thing I can come up with is "What about my O2 dropping even without flagged apneas?" Which involves my O2 monitoring. My AHI is <1...If my O2 is dropping I would assume it is lung function. It occurs during apneas <10 seconds in duration...
Since switching to an S9 Autoset (from my S8) my AHI is consistenly under 0.5, often 0, with about half of the events I do have reported as clear airway events. Now, even with that excellent AHI, my pulse-ox shows I occasionally desat from baseline at the moment (97 --> 90 or 95-->87 for example) and, rarely, even lower; however, the desat never lasts longer than 15-18 secs. So far, I'm not concerned with them because there is absolutely no simultaneous increase in my pulse nor do I wake up (that I'm aware of) which makes me think my hyper-sensitive brain is not sending panic signals with these desaturations. I believe these are likely caused by the much higher stress I've felt lately as they are a recent phenomena, so I'm careful to practice my stress mgmt techniques, try to get more sleep (mine's not great right now as I'm having issues falling asleep and waking about 4-5AM & having trouble falling asleep again), and avoiding/reducing exposure to the known stressors in my life.
Things I'd figure out first: Is your pulse rising in response to the desats? Are they common or rare? Did they start or are they associated with anything in your waking life, change in diet/routine/drugs/supplements? Do you wake up following them? Remember a certain number of centrals are considered normal.
Regarding your desats, could they be false readings? My sleep doc said I had them and should ignore them. She had a term for them that I forget. Maybe residuals? Sorry it did not seem important so I do not remember much of the discussion.
Re: Last time you've seen any sleep professional? (poll)
Posted: Sun Jan 29, 2012 2:47 pm
by archangle
Lizistired wrote:Back on the original topic, I am trying to compile questions for my sleep doc follow up.
The only thing I can come up with is "What about my O2 dropping even without flagged apneas?" Which involves my O2 monitoring.
My AHI is <1 so I just don't see the point in going to my follow up. Am I missing something. I got the help I needed here.
If my O2 is dropping I would assume it is lung function. It occurs during apneas <10 seconds in duration. Just guessing that my sleep doc isn't going to be of much help. Might as well talk to my PCP.
Thoughts?
Opinions?
How long are the low O2 events?
Re: Last time you've seen any sleep professional? (poll)
Posted: Sun Jan 29, 2012 4:02 pm
by Kiralynx
I have never seen a sleep professional, as such.
A pain management specialist felt my hip and gut pain was due to apnea and sent me for a sleep test. It was positive. It was read by a sleep doctor who never laid eyes on me.
I had a surprisingly competent RT at Apria who recommended the Bipap ASV after I had centrals on my titration, and the pain doctor agreed and wrote the script. (That was the last time Apria got anything right.)
Since I received my Bipap, and sorted out my issues with the software I wouldn't have known I needed without this Forum, I haven't needed the pain doctor, so I haven't seen her in over three years.
My GP gets copies of all my data.
Re: Last time you've seen any sleep professional? (poll)
Posted: Sun Jan 29, 2012 4:09 pm
by xenablue
Gazhacks wrote:sandman19 wrote:I've seen my sleep specialist twice in two months. A vast majority of people on CPAP that I talk with have no interest whatsoever to learn more about their disease, their machines or their data.
maybe true over the water but here we are NOT allowed to see our data, I even took my hospital to the Houses of Parliment to fight for my right to check my settings and data on my machine and still they wont help. You should count yourselves very lucky to be allowed just to download your data and browse over it, I would give a week off my mask for the privalige.
I am curious as to how you can be stopped from looking at your data if you have a clinician's manual enabling you to do so.....
xena
Re: Last time you've seen any sleep professional? (poll)
Posted: Sun Jan 29, 2012 4:14 pm
by Kiralynx
Therapist wrote:See! There we go again. "Most patients have no interest in data."
Indeed most patients do not have an interest in data. This is the reason that DMEs typically supply only "bricks". It is ridiculous to campaign for the more expense machines when most of the market has no interest.
Many of you in this forum are out of touch with reality.
And how many patients are taught that they should be interested in their data, and given an opportunity to see how taking responsibility for their health can benefit them?
I have a friend who is diabetic. If she shows up without her meter at an appointment with her endocrinologist -- and the endo requires full records of every test -- she is told to make another appointment, and not to forget her meter again. Patients who "forget" their meters more than a certain number of times are told to find another endo.
If CPAP data were handled the same way, more people would be interested. You cannot be interested in something you know nothing about.
Interestingly enough, it was another friend who was very deep into diabetes education who directed me to this Forum three and a half years ago. She told me that "the folks at this Forum are not your average CPAP users. But they are what all CPAPers should be."
Re: Last time you've seen any sleep professional? (poll)
Posted: Sun Jan 29, 2012 5:21 pm
by chunkyfrog
What a wonderful line!
Quote:
"...the folks at this Forum are not your average CPAP users. But they are what all CPAPers should be."
I will be using this line to get folks to check out this site.
Re: Last time you've seen any sleep professional? (poll)
Posted: Sun Jan 29, 2012 5:54 pm
by Kiralynx
chunkyfrog wrote:What a wonderful line!
Quote:
"...the folks at this Forum are not your average CPAP users. But they are what all CPAPers should be."
I will be using this line to get folks to check out this site.
Paula, the lady who directed me here, would be delighted. Unfortunately, she left this plane of existence last June. I miss her very much. But it's amazing how many instances I keep coming across of how she continues to help people. I know she would say, "Quote away!"
Re: Last time you've seen any sleep professional? (poll)
Posted: Sun Jan 29, 2012 10:17 pm
by refchef
I'd love to actually KNOW my data!! My data has not been tracked since my initial sleep study 4 or 5 years ago. My insurance won't pay for a machine that uses a card, so I'm stuck in a pit of ignorance. I don't think they'll even pay for another sleep study.
I guess I'm doing OK. I don't have headaches like I did before I started therapy. And I'm not dead yet.
Re: Last time you've seen any sleep professional? (poll)
Posted: Sun Jan 29, 2012 10:35 pm
by Mr Bill
ChicagoGranny wrote:Muse-Inc wrote:Lizistired wrote:Back on the original topic, I am trying to compile questions for my sleep doc follow up.
The only thing I can come up with is "What about my O2 dropping even without flagged apneas?" Which involves my O2 monitoring. My AHI is <1...If my O2 is dropping I would assume it is lung function. It occurs during apneas <10 seconds in duration...
Since switching to an S9 Autoset (from my S8) my AHI is consistenly under 0.5, often 0, with about half of the events I do have reported as clear airway events. Now, even with that excellent AHI, my pulse-ox shows I occasionally desat from baseline at the moment (97 --> 90 or 95-->87 for example) and, rarely, even lower; however, the desat never lasts longer than 15-18 secs. So far, I'm not concerned with them because there is absolutely no simultaneous increase in my pulse nor do I wake up (that I'm aware of) which makes me think my hyper-sensitive brain is not sending panic signals with these desaturations. I believe these are likely caused by the much higher stress I've felt lately as they are a recent phenomena, so I'm careful to practice my stress mgmt techniques, try to get more sleep (mine's not great right now as I'm having issues falling asleep and waking about 4-5AM & having trouble falling asleep again), and avoiding/reducing exposure to the known stressors in my life.
Things I'd figure out first: Is your pulse rising in response to the desats? Are they common or rare? Did they start or are they associated with anything in your waking life, change in diet/routine/drugs/supplements? Do you wake up following them? Remember a certain number of centrals are considered normal.
I have to turn off the alarm on my POX at night. I may be cruising along at ~93% SPO2. But if I move, the effort quickly drops my SPO2 below 90% and it alarms. Maybe you are moving?
Regarding your desats, could they be false readings? My sleep doc said I had them and should ignore them. She had a term for them that I forget. Maybe residuals? Sorry it did not seem important so I do not remember much of the discussion.
Re: Last time you've seen any sleep professional? (poll)
Posted: Mon Jan 30, 2012 8:14 pm
by Bons
Off to see mine on Thursday after about 6 months. He WANTS to see me every two, but there have been no changes to my settings in over a year except when I've suggested them. My DME unlocked my machine after I showed her that I understood a bit more about the settings than the doc did.... But, I need a new script, and we are probably losing health insurance soon, so I've got an appointment.
Re: Last time you've seen any sleep professional? (poll)
Posted: Tue Jan 31, 2012 10:39 am
by idamtnboy
refchef wrote:I'd love to actually KNOW my data!! My data has not been tracked since my initial sleep study 4 or 5 years ago. My insurance won't pay for a machine that uses a card, so I'm stuck in a pit of ignorance. I don't think they'll even pay for another sleep study.
I guess I'm doing OK. I don't have headaches like I did before I started therapy. And I'm not dead yet.
If it's been 5 years, or close to, start pushing your doc for an updated prescription for a fully capable machine. Most insurance companies follow Medicare guidelines and a machine is considered to be past its useful operating life at 5 years.
BTW, I think all, or at least most all, CPAPs use cards today. Now is the time to start campaigning for what you need to knowledgeably monitor your therapy. Even a brick wall can be broken through. It just takes more time and effort.
Re: Last time you've seen any sleep professional? (poll)
Posted: Tue Jan 31, 2012 10:43 am
by idamtnboy
One of the aspects of my SA treatment that bugs me most is that, even in spite of all the info connecting sleep apnea with heart problems, my cardiologist showed no interest at all in learning more about my SA condition and therapy. This is after he put in a stent along with doing a balloon angioplasty.
Re: Last time you've seen any sleep professional? (poll)
Posted: Wed Feb 01, 2012 12:02 am
by PST
It's been a couple of years for me since I've seen a sleep professional, but I called today to make an appointment with my sleep doctor, and I was given a choice of times on Thursday. Do I really want a doctor who is so little in demand that he can see me on less than 48 hours notice? It reminds me of the Groucho Marx joke about not wanting to belong to any club that would have him as a member.
Re: Last time you've seen any sleep professional? (poll)
Posted: Wed Feb 01, 2012 11:57 am
by SockPuppet
PST wrote:It's been a couple of years for me since I've seen a sleep professional, but I called today to make an appointment with my sleep doctor, and I was given a choice of times on Thursday. Do I really want a doctor who is so little in demand that he can see me on less than 48 hours notice? It reminds me of the Groucho Marx joke about not wanting to belong to any club that would have him as a member.
Depending on what geographic area you live in this is a very broad issue due to the poor economy:
- Dental hygienists, barbers, mechanics, eye doctors, doctors performing a lot of routine health exams even routine colonoscopies - all have seen the white space in their appointment books grow.
People are spreading out their dental exams, their haircuts, their auto oil changes, their eye exams and other routine health exams.
The true unemployment rate is, what, maybe 16%?
Seeing the sleep doc is often seen as optional. Even with undiagnosed people suffering with sleep apnea it is often seen as optional by the sufferer and even his GP.