Wise to tell the Doctor?

[DrPepper00]

My Dr. knows I use SleepyHead and adjust my own pressures. My first visit to the DME and Dr. I was getting 0.0 every night. I complained that I thought the machine was not working properly. My DME gave me a new machine, my Dr. said, "Do you mind if we try raising your pressure?" She was familiar with Cpaptalk, but hadn't seen SleepyHead. I took in my laptop to show her my charts. I went back to the DME to change the pressure, but they had just closed for lunch. I didn't want to sit there for an hour waiting. So I went home and changed it myself. Two weeks later, I called the Dr to tell her I wanted to raise my pressure again and that I had done it myself the time before. She said OK. On my next visit, the DME printed off a report, but it was for the wrong month. Since I had printed out SleepyHead reports for my Dr., she kept them and threw the DME reports away. My AHI was running around 5 and I asker her about upping the pressures again. She said she was satisfied with what I had, but I could adjust them if I wanted to. I couldn't hurt anything. Come back in 6 months. She wasn't concerned that my Epworth Sleepiness scale was still way too high. I had fallen asleep in her waiting room at noon while I sat there for 10 minutes.

Moral to the story... you are the one that cares the most about your treatment. My DME and my Dr. have not explained my treatment, my sleep test results or tried to optimize my treatment.

[zoocrewphoto]

I am very new to xpap treatment. Only 9 days now. I asked for a copy of my sleep study results, which shows the data with and without the apap machine. And I am checking the data every few days with the Resmed software. So, I am happy that my settings look pretty good in terms of pressure. I go back after 6 weeks, and the doctor will review the data and see if he believes any changes should be made.

I do plan to take in any printouts if I find I have questions about something. I will also tell him that I adjusted the clock by 4 hours so that the machine does not change days during my sleep. It now believes that noon (day change time) is at my 4pm. I changed that myself after the first night as I realized it was going to mess up my data. I also set the machine to give me control over humidity as it was set in auto mode.

My doctor is a neurologist who specializes in sleep and headaches. He also has sleep apnea himself, as does at least one if his receptionists, and she asked about my mask when I called to make my followup appointment. My doctor specifically picked the model of apap machine as he uses the Resmed software. And there was a computer in the room I had my first appointment in. I would assume that is so he can look at data with the patient. He was really good at showing me the data from the sleep study.

My DME knows that I have learned how to get into the clinician mode. I'm not sure what he thought as it was my mom who told him. After seeing(and trying on) my mask, she got a new prescription and went into to get the same mask. She got the same guy (not sure what you call the people who work there), and he asked if we were related. Then asked how I was doing. She told him I changed the time on it. She said he seemed surprised, but not upset. Obviously, I had to get into the setup mode to do that, so he knows I can change it.

My primary doctor won't mind at all. She let me see my sleep study results 3 days before my sleep doctor appointment since I happened to be there for my blood pressure followup, and she told me she had gotten a summary from the doctor. She didn't know what everything meant, so I still learned more from the sleep doctor. But it was nice to get a peak at it. And she was quick to refer to me to a sleep study when I told her I have sleep apnea, and everybody who shares a hotel room with me says I snore scary and stop breathing. She also encouraged me to check my blood pressure daily at home between appointments. And to bring in my monitor so that we can check to see how accurate it is. I have found that my blood pressure goes up and down a lot during the day, so it was still high even though I was getting some okay readings in the doctor's office. I brought in a printout of my readings, and they asked if they could make a copy. I figure that doing this helps my doctor determine how I am doing and whether I need something more, or can cut back. I am noticing more improvement since starting the apap. I even had 2 days in a row with multiple numbers in the normal range. I have never seen a reading below 130 before, and only rarely in the 130s. I got a 117 and a 104. I then had a bad night of sleep, and it went back up to 168. But if tracking my numbers can show that the apap is correcting my blood pressure, then maybe I can get off these meds, or at least reduce them (and ditch the horrible water pill).

I think a lot of doctors would appreciate if their patients actually wanted to understand their health and actively worked to improve it. I know the DME was surprised that I knew what an apap machine was as he said a lot of people don't know when they come in to get a machine that there are different kinds.

[Suzjohnson]

I believe the closer they get to retirement, the less some of them care about staying current, and god forbid they should open a book! My husband's GP prescribed potent anti-anxiety and anti-depressants when my husband complained of anxiety and unexplained exhaustion. Sound familiar? I finally drug him to the neurologist/sleep specialist I've been seeing and guess what? Yep, sleep apnea and will go in for his titration study in a couple of weeks. The thing that makes me so angry is that now he is having to go through withdrawing from these useless but harmful drugs that he's been taking nearly a year.

On a happier note, the cardiologist I see was full of praises for CPAP therapy and says it's very possible it will help lower my PVCs to a point that with increased beta blocker, we can avoid ablation. Oh please, God, let it be so!

I think from now on I will never go to a doctor that looks as old as I do. If he doesn't look young enough to be my son, not interested. I also believe in full disclosure with all my docs. I believe the only way they can taylor treatment properly is to be aware of the big picture, not just micro-managing the one little corner of their specialty. And yes, I would run not walk away from any physician that didn't have the same view.

Suz

[JohnBFisher]

...Not a good doctor. It is his duty to keep up with medical advancements. ...

EXACTLY! I have NO sympathy for anyone that is not willing and able to stay current in their field. I worked in the computer industry my entire career. I figured that I had to completely relearn my job every four years or so. And the pace continues to accelerate. Don't tell me that "There's too much!". There's too much in just about ANY field. Regardless, it is our responsibility as professionals to stay current. And trust me, computers have changed even more radically in that period of time than the study of medicine.

This is one of the things that I consider when I work with a doctor. I don't mind a doctor who says "I don't know anything about ASV units." My primary doctor admitted as much .. and then asked to learn more about them. But by admitting the lack of knowledge she was also admitting she needed to learn and wanted to do so. I *never* hold the need to learn against someone - unless it is their specialty. If a sleep doctor is not aware of current technologies in sleep medicine, that is laziness and inexcusable.

Just my two cents worth on that ...

[wm_hess]

I do plan to take in any printouts if I find I have questions about something. I will also tell him that I adjusted the clock by 4 hours so that the machine does not change days during my sleep. It now believes that noon (day change time) is at my 4pm. I changed that myself after the first night as I realized it was going to mess up my data. I also set the machine to give me control over humidity as it was set in auto mode.

Hi

I happened to catch this and suggest you look at Sleepyhead software instead of Rescan. Sleepyhead has an option under preferences that allows you to choose the time of day to split. Using this, and my swing shift timing, I can keep the time correct, but not switch to a new day until 2:00 in the afternoon instead of noon (Rescan switch time).

-Bill

[chunkyfrog]

My thought:
Any doctor who will not stay current, probably cheated his way through school.
Are automotive mechanics held to a higher standard than physicians?
I cannot accept that.

[BlackSpinner]

I agree that all docs should be expected to do the impossible.

http://theincidentaleconomist.com/wordp ... -overload/

http://33charts.com/2011/08/doctors-inf ... rload.html

http://www.nber.org/papers/w14159.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC521514/

Yes they need to invest time and money to stay up to date. My mother was a librarian for a tax department - she provided a "clipping service" for the lawyers - only law information that referred to taxes. They need to group together and arrange for someone like that. And yes they will have to invest MONEY into their careers - just like everyone else does.

[JohnBFisher]

I agree that all docs should be expected to do the impossible. ...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC521514/ ...

Normally, I tend to agree with your posts. However, let's analyze the point in the last article. It notes:

Results: The combined list contained 341 currently active journals with 8,265 articles. Adjusting for publication frequency, we estimate 7,287 articles are published monthly in this set of journals. Physicians trained in epidemiology would take an estimated 627.5 hours per month to evaluate these articles.

This reminds me of the old saw: "Figures don't lie, but liars figure!"

That is all too true in this as well. I can skim detailed reports to see if there is something in it that I need to *KNOW*. That skimming takes a mere fraction of the time needed to read and absorb the article. Sometimes an author will repeat the same article (or close enough to make no never-mind) in other journals. We can skip the repeats completely. Then consider that there is a high level of overlap between articles. I can often quite quickly locate the points of view in those articles and find the best representative articles. Again, I've cut my reading dramatically.

How do I know that doctors can and should do this? As I noted, I had to keep up with a VERY demanding profession as well. And I doubt that the computing industry is the only industry that's been completely revolutionized over the past 30 years or so. As others have noted, some professionals once they reach a certain age seem to give up on trying to find new answers. That's just as true in computers as it is in medicine. But that's not true for all people. Some professionals try to help continue to quench their thirst for knowledge. Those become the leaders in their profession.

And yes, they keep up with an unbelievable ... but manageable ... onslaught of knowledge. And somehow they master it.

Again, I don't expect my GP to understand everything about sleep medicine. However, I do expect her to be aware of studies that show that poor sleep can and does lead to adverse health consequences. In this case, she should know enough to refer someone to the appropriate specialist.

By the same token, I don't expect my sleep specialist to understand (other than generally) about the management of diabetes. But I do expect him to know those same studies show that poor sleep can greatly increase the risk of developing Type 2 Diabetes. And in this case, he should know enough to spot possible signs of common problems associated with poor sleep ... and refer that patient to work with his GP or another specialist.

But for my doctor to be able to properly deal with ME .. I want to tell him that I have the data and review it periodically to be certain that my therapy remains effective. I don't just go by "feel". I always look at the data. By looking at the data, I know as an example if I'm really struggling with a leaking mask. I know if my breathing might be very irregular (it is). And I know if my latest new trick of some probable vocal cord paralysis might be causing problems during sleep. He knows .. because of the data I use .. that it's not just a hunch, but a possible issue that might need to be addressed.

So, by telling my doctor that I have the data and review it, it's just like a diabetic telling his doctor his has data and reviews it. It lets the doctor know that I am in involved patient, who will do his best to follow the therapy. It let's the doctor know that I try to correct normal problems before they become major. It lets the doctor know that I attempt to stay ahead of problems.

So, yes, I think it's wise to tell your doctor.

[BlackSpinner]

Normally, I tend to agree with your posts. However, let's analyze the point in the last article. It notes:

Results: The combined list contained 341 currently active journals with 8,265 articles. Adjusting for publication frequency, we estimate 7,287 articles are published monthly in this set of journals. Physicians trained in epidemiology would take an estimated 627.5 hours per month to evaluate these articles.

This reminds me of the old saw: "Figures don't lie, but liars figure!"

That is all too true in this as well. I can skim detailed reports to see if there is something in it that I need to *KNOW*. That skimming takes a mere fraction of the time needed to read and absorb the article. Sometimes an author will repeat the same article (or close enough to make no never-mind) in other journals. We can skip the repeats completely. Then consider that there is a high level of overlap between articles. I can often quite quickly locate the points of view in those articles and find the best representative articles. Again, I've cut my reading dramatically.
.

Not only can you skim the articles, every single one has a summary so really you only need to skim the summary to know if it is something you need to read in depth. That is why they have summaries. To summarize.

[jnk]

I guess I just don't know as much as you guys do about what it takes to be a good doc.

Is it as easy as keeping up with computer technology? I very much doubt it. In fact, personally, I find that comparison rather humorous. That is not the state of medicine today, I don't think. Maybe it was 30 years ago. But not today. There are mountains more relevant data that docs have a choice of either barely knowing by skimming articles they don't read, or they can spend all day educating themselves instead of practicing. Skimming articles without evaluating the details of what the summary is based on happens to be my definition of an especially bad doc. But hey, that's just me.

My suggestion is never to expect a doc, ANY doc, to know as much about your condition(s) as YOU do, since YOU have taken the time to do the research in a way he can't possibly have the time to do for all his patients' varied conditions. Some primary docs have experience in PAP for OSA, some don't. They are human. They have opinions. They follow them. And the art of medicine involves different docs having different pet treatments and approaches. There is little scientific basis for most of what docs do all day. They don't say that out loud, since saying it doesn't inspire confidence and might undo the valuable placebo effect that occurs when a patient has confidence in the doc. I value a doc whose thought process differs from mine, though, since we bring different things to the table in figuring things out. If he thinks exactly like me, what use is he to me?

As for me, I will never use a doc's knowledge of the one condition I know most about as a litmus test for whether he is a good doc. As for OSA, I've got that covered. So I don't care if he knows a flyin' flip about it now, selfishly speaking. I respect a doc who wants to learn from me in order to help other patients. Mine does. As for how up-to-date he is on the next condition I have, that is a crap shoot with any doc.

I like highly conservative primary docs, myself, since I consider them less likely to throw alternative pet theories at me or to load me up on meds with dubious benefits. And many conservative docs still consider the jury out on PAP therapy. Smart guys. Guys who may save my life if I present with a condition they have experience with. As long as the primary doc has a pretty good idea about when to refer me to the right specialist (instead of trying to specialize in every specialty, a stupid thing to do in my opinion), he's earned his keep.

But again, that's just me. We all have differing expectations on what a doc is supposed to do for us, and I respect all other takes on the matter, whether I chuckle or not.

[BlackSpinner]

Is it as easy as keeping up with computer technology?. I very much doubt it. In fact, I find that comparison rather humorous. That is not the state of medicine today.

It is probably worse for people in computer technology. It is changing daily. The computer technology I learned in school has no relationship to what I was doing when I retired. I started with cards and paper tape, 64 K of fragile memory that took up the size of a fridge in a huge environmentally controlled room. I trucked my cards to Toronto for an over night test runs with the admin toggling binary changes for additional tests. Right now that is a laugh. You can do more with your phone that with that computer. In 5 years everything you know is out of date. With medicine at least the hardware (humans) stay pretty much the same. Surgery - they still cut but now they use optics and lasers. Cancer - hasn't changed in treatment in the last 60 years, just tweaked. There hasn't been a break through in antibiotics in years, just tweaks.

[jnk]

And yet, a computer is a nearly infinitely less complicated piece of machinery than a human being.

And yet, all humans are unique in their response to the variables of treatments.

And yet, no computer specialist is expected to be an expert and up to date on every single detail on how every single program being used today by anyone, especially among proprietary programs, works.

And yet, . . .

Never mind. It doesn't matter.

[Elle]

Mine isn't interested and probably forgets who I am.

[JohnBFisher]

... And yet, no computer specialist is expected to be an expert and up to date on every single detail on how every single program being used today by anyone, especially among proprietary programs, works. ...

Exactly!

As I noted, the technology I had to support and UNDERSTAND changed at the rate of once every four years. COMPLETELY changed. Unless you put yourself to sleep reading the manuals and working on lab computers to get to know the technology, you can not imagine how much work that entails.

I am not at all underestimating how much knowledge a doctor must master. Nor how much they must keep up with it. I just think you don't understand how much other professionals must conquer in pursuit of their profession.

And in the case of doctors and computer professionals, it's necessary to know your corner very well. If a sleep doctor says they don't even know what an ASV unit is, it's time to find another. Just as it would be time to find another computer professional who deals with storage who says "What's a solid state disk?"

But as I noted, if you don't deal with that specialty, I only expect that you know about it .. enough to point someone to the expert. If I only dealt with networks, and someone asks about solid state disks, I would note they are the latest rage and I have an associate who's a wizard with them ...

The point is that a doctor who does not stay current is not doing their job. Just as it would be wrong for a computer professional who says "Let's plan on using tape drives for that database ...".