Dr. David M. Rapoport at Manhattan A.W.A.K.E. on May 5, 2010

[jnk]

Just a reminder:

As Director of NYU's Sleep Medicine Program and a world-renowned authority on Sleep Apnea, Dr. Rapoport has appeared numerous times on national and local radio and television, including a recent interview on the "Today" show. He sits on the Boards of many associations in the field, including our own American Sleep Apnea Association. At the time of his appearance at Manhattan A.W.A.K.E., he will have recently returned form a sabbatical in New Zealand where he was involved in developing the next generation of CPAP technology. We consider ourselves very fortunate to have this luminary speak to us and answer our questions.

Date: Wednesday, May 05, 2010
Time: 6:15 PM to 8:15 PM
Topic: Technology of CPAP and Gadgets Used to Enhance It
Speaker: David Rapoport, M.D.
Location: 134 West 26th St. (between 7th and 6th Aves., closer to 7th Ave.), 2nd Floor, New York, NY
Sponsor: Medstar

http://manhattanawake.org/meetings

My understanding is that all cpaptalkers are welcome. (At least, I haven't been thrown out of any of the meetings yet, myself.) Besides, hey, it's free. And I can afford that. All I have to do now is to save up for the subway ride.

jeff

[jnk]

Well, now, THAT was interesting. I'm still processing tonight's meeting deep inside my noggin.

Dr. Rapoport is one interesting dude. Hopefully Mike over at sleepguide.com will post a video of the presentation so everyone can comment after hearing things for themselves. But here is how I experienced the meeting.

The first thing Dr. Rapoport did was to disclose his specific affiliations with certain companies as he joked that his disclosures meant that we shouldn't believe a word he said. I thought he was joking. After hearing the presentation, now I'm not so sure.

I guess I'm spoiled by hearing from people like Dr. Park and Dr. Bhola, doctors whose views I agree with more than 99% of the time. I think that may be because they are the kind of doctors who spend a lot of time listening to their patients, so they have their fingers on the pulse of what apnea patients experience and need.

Dr. Rapoport, on the other hand, is, from what I could tell, more of a manufacturers' research kind of doc. He seems more interested in broad ideas for PAP in the future. That's cool, but not the kind of practical information I am used to.

For example, he seems to feel that bilevel and APAP and exhale relief are mostly failed ideas, since it hasn't been proved that people are more compliant with them. I agree with him that straight CPAP is a wonderful thing and as efficacious as a therapy can be. But if comfort of the patient is a consideration, I don't see how those developments can be considered somehow less than ideal. I wonder if he would feel the same way about those developments if he was more directly connected to the big "R" companies? Hmm.

He kept saying that he wasn't there to try to sell anything, but he sure talked a lot about some sense-awake or sense-asleep nonsense--the ability of a machine to sense when a patient was awake or asleep. Apparently apnea patients aren't smart enough to know to hit the ramp button when they wake up in the middle of the night, or something.

He kept talking like it would be ideal for APAPs to drop to 4 cm the moment someone wakes up. He even said he wished it could go lower! And he kept referring to the PAP "turning off" when someone woke up. Apparently he has never used a CPAP to experience how hard it is for many people to breathe at low pressures with a mask on. But, hey, reality has a way of asserting itself, and he'll learn.

I respect his enthusiasm and the role he has played in the history of CPAP. I raised my hand and thanked him on behalf of OSA patients who use PAP therapy every night, and I meant it sincerely. He deserves credit for all he has done, is doing, and will do. I just think he could learn a lot by having more interaction with the people in the trenches. Especially patients.

Actually, all in all, this may have been the most educational of all the A.W.A.K.E. meetings I've ever attended in that it brought me face to face with the lack of basic understanding of some of the luminaries in the industry on the research and hardware development front.

I kept thinking of carbonman and how he makes the point that the patients have the knowledge and we do it mostly alone. CM, you are one smart dude. I'd listen to you give a lecture any day over a roomful of manufacturers' researchers.

For the record, I like Dr. Rapoport and would have a beer with him any time. I'd like to teach him a thing or two about PAP therapy though. Does that make me a conceited jerk? Maybe. But hey, I calls them likes I sees them. Because that's what I do.

jeff

[Slinky]

Ach, jnk, what a let down. Sounds like Dr Rapoport owes you the price of your subway fare!!! I'm disappointed.

[jnk]

Ach, jnk, what a let down. Sounds like Dr Rapoport owes you the price of your subway fare!!! I'm disappointed.

Well, Slinky, the way I look at it is that I learn the most from people I agree with the least. He made me think. He made me reexamine the basis for my beliefs. He gave me a perspective different from my own. So, like I said, in that sense, it may have been the most educational meeting I've been to. Well worth the subway fare.

But, yes, it wasn't quite what I expected. The nice thing about the meetings is that every one of them has been completely different. And I have had the opportunity to be helpful to fellow patients every time I've gone.

Mike is sure the perfect meeting organizer, so it is a pleasure to see him in action every time. Whenever the doc would say something that wasn't quite a good idea, Mike and I would look at one another like "huh"?

Glad you didn't drive over for the meeting, Slinky. Then he would have owed some serious travel expenses!

[Janknitz]

He kept saying that he wasn't there to try to sell anything, but he sure talked a lot about some sense-awake or sense-asleep nonsense--the ability of a machine to sense when a patient was awake or asleep. Apparently apnea patients aren't smart enough to know to hit the ramp button when they wake up in the middle of the night, or something.

One thing that bugs me about my supposedly very smart machine is that it doesn't seem to respond to changes very fast, so that when I wake and I'm clearly not being apnic, the pressures will remain pretty high. I could hit the ramp button, but generally don't--probably because until recently my ramp was set too low and I knew I'd be more miserable ramping than dealing with the high pressure.

But the slow response of my machine makes me wonder if it's equally slow to respond to apnea when I first fall asleep. When I saw my PSG, it showed I was apnic from the moment I fell asleep until I came fully awake--I didn't have to wait until deep sleep to have the problem.

My reported AHI's are pretty low (always less than 1), and I'm curious if they are all happening at the beginning of the night before my machine has had a chance to respond. But I can't afford the software to see exactly what's going on.

[jnk]

One thing that bugs me about my supposedly very smart machine is that it doesn't seem to respond to changes very fast, so that when I wake and I'm clearly not being apnic, the pressures will remain pretty high. I could hit the ramp button, but generally don't--probably because until recently my ramp was set too low and I knew I'd be more miserable ramping than dealing with the high pressure.

But the slow response of my machine makes me wonder if it's equally slow to respond to apnea when I first fall asleep. When I saw my PSG, it showed I was apnic from the moment I fell asleep until I came fully awake--I didn't have to wait until deep sleep to have the problem.

My reported AHI's are pretty low (always less than 1), and I'm curious if they are all happening at the beginning of the night before my machine has had a chance to respond. But I can't afford the software to see exactly what's going on.

Fast response can be disturbing to some people's sleep, as I understand it. So gradual changes may be the best thing, depending.

Having the ramp set to the right pressure for you can be important for comfort if you need ramp for that.

Many find they get best use from the auto when they set the minimum pressure up to within a cm or two of the pressure needed to deal with obstructive apneas.

[carbonman]

Apparently he has never used a CPAP to experience how hard it is for many people jeff

JNK, you are fortunate that the AWAKE meetings
you have the opportunity to attend, are educational....
or atleast thought provoking.

Every feature of cpap therapy in each arena...
be it machines, masks, hoses, hose management,
headgear or aromatherapy.....
is a bust for some and the Holy Grail to others
to make their therapy work.
I find it truly amazing that someone w/those credentials
could discount anyone of them as not being beneficial.
How can this person be in touch w/real cpap therapy?

What an adventure it would be to take a subway
ride w/you to one of these meetings.

I'll bet between the two of us we could get booted.

[roster]

.... he sure talked a lot about some sense-awake or sense-asleep nonsense--the ability of a machine to sense when a patient was awake or asleep.

Did he list an affiliation with F&P? SensAwake is their development, http://www.fphcare.com/osa/clinical-and ... awake.html.

When SensAwake was first introduced, I was excited (Yes, I lead a dull life) that it could be a significant benefit for people who have high pressure requirements. However, in the meantime, I haven't seen any posts from users praising the feature.

[jnk]

. . . I find it truly amazing that someone w/those credentials
could discount anyone of them as not being beneficial.
How can this person be in touch w/real cpap therapy? . . .

I assume his discounting those developments (which, in his defense, he may have had some significant input in developing in some ways) may be because he is focusing on things that are designed to go beyond those developments, and he is personally disappointed that more people aren't using PAP therapy, and he wants them to. He is the most enthusiastic person about CPAP I've ever heard speak. He may mentally file those developments under "attempts to replace or improve something that already works great." (my words) His personal disappointment in those things not being the Holy Grail for everyone may be what he was trying to communicate. I don't know.

. . . What an adventure it would be to take a subway
ride w/you to one of these meetings.

I'll bet between the two of us we could get booted.

Yeah, I bet we could! Add echo into the mix and we all might get banned for life.

I will grant him the point that not everyone finds C-Flex comfortable. I will grant him the point that sensitive sleepers can get arousals from APAP. And I will grant him the point that bilevel is often misapplied and not used according to what it was intended for. But for the people who benefit from those technologies, such as air-swallowers and people with high pressure needs, I think those developments have been game changers, even if those same people eventually end up settling on straight CPAP.

The guy is trying hard to be helpful to people using PAP, so he deserves credit. And scientifically speaking, I didn't hear him make even one major slip of the tongue, based on what little I know. And he is certainly honest to a fault and a regular kind of guy. But, I think you and I may just be spoiled by how knowledgeable and helpful the experienced ones in this forum are. Not everyone can be a rested gal or an -SWS. But, hey, if I were Dr. Rapoport, I wouldn't pursue ANY development for PAP patients without getting the thoughts of people like them.

jeff

[jnk]

. . . Did he list an affiliation with F&P? SensAwake is their development, http://www.fphcare.com/osa/clinical-and ... awake.html. . . .

Yes he did. And he spoke of all such developments in what I would consider a low-key balanced way, despite his personal involvement. He mentioned personal hopes and excitements about other new technologies while at the same time stressing that plain old CPAP is amazing in how many people it helps so simply. He mentioned that the idea behind CPAP is so simple that it is "silly." But he also said he doubts it will ever be replaced. It just works too well. He went so far as to say that he is unaware of any medical treatment that comes close to the universal efficacy of PAP in helping a specific medical problem. He ranked it above Penicillin in that respect. Now THAT'S well-appreciated enthusiasm, in my opinion!

[roster]

He went so far as to say that he is unaware of any medical treatment that comes close to the universal efficacy of PAP in helping a specific medical problem. He ranked it above Penicillin in that respect. Now THAT'S well-appreciated enthusiasm, in my opinion!

Is he aware that the failure rate is more than 50%?!! See also this morning's post on Regis.

[carbonman]

His personal disappointment in those things not being the Holy Grail for everyone may be what he was trying to communicate. I don't know.
jeff

I sure hope that is the situation.
Many features of cpap that I no longer need,
were instrumental in my initial adjustments to therapy.

But, I think you and I may just be spoiled by how knowledgeable and helpful the experienced ones in this forum are. Not everyone can be a rested gal or an -SWS. jeff

I certainly make no claim to be an RG or -SWS, but I think
all of us that hang around this forum,
have been successful because of this forum,
learn, share, laugh and cry together....are spoiled.
We are a different breed of 'papper because of this forum.

[jnk]

His personal disappointment in those things not being the Holy Grail for everyone may be what he was trying to communicate. I don't know.
jeff

I sure hope that is the situation.
Many features of cpap that I no longer need,
were instrumental in my initial adjustments to therapy.

But, I think you and I may just be spoiled by how knowledgeable and helpful the experienced ones in this forum are. Not everyone can be a rested gal or an -SWS. jeff

I certainly make no claim to be an RG or -SWS, but I think
all of us that hang around this forum,
have been successful because of this forum,
learn, share, laugh and cry together....are spoiled.
We are a different breed of 'papper because of this forum.

Well said. Both points.

[jnk]

He went so far as to say that he is unaware of any medical treatment that comes close to the universal efficacy of PAP in helping a specific medical problem. He ranked it above Penicillin in that respect. Now THAT'S well-appreciated enthusiasm, in my opinion!

Is he aware that the failure rate is more than 50%?!! See also this morning's post on Regis.

I think he was coming at the question from the medical aspect of it working when the patient uses it, although he made the point well that the problem is getting people to use it when they perceive it as being inconvenient or uncomfortable. He made the point that it is helpful when the patient is specific with his medical team about what specific problem he is having instead of just saying "I don't like it" or "I can't make it work." It is a running theme at the meetings, it seems, that you have to be very vocal and proactive to get help, even if that isn't your nature. Of course, my solution to that is to send them all to cpaptalk.com, but he was speaking to an audience mostly made up on non-computer-users, judging from the people I spoke to afterward.

[Redeye]

jnk: Thank you so very much for reporting on this. You are indeed a fantastic correspondent.

Redeye