UNIVERSAL SLEEP APNEA PATIENT BILL OF RIGHTS

[49er]

Todzo,

I feel like the speaker who is coming in after the previous person electrifies the crowd. Once again, you hit a home run with your speech. Actually a grand slam:)

Anyway, to address sleep2die4's post, yes, patients have responsibilities, no question about that. For example, part of me feels like I should be complaining to the appropriate person at the hospital of the 1st sleep center I received services at after a very poor experience with a sleep doctor. But for various reasons that are too long to get into, I have chosen not to do it. I don't feel good about my decision but for practical reasons, I am making the best choice I can.

But here is an example of why this bill of rights is so important. As everyone may or may not know, I am interested in purchasing the Amara full face mask when it comes out.

However, as a backup plan, I have thought about purchasing the Quattro FX. But I can't find a bleeping sizing guide and I need this since I don't have health insurance and can't go to a DME.

Ok, call the company, no big deal. But you multiply this situation several times over and it is exhausting, particularly since cpap treatment is not working for me right now.

I mean, if the mask is the key to cpap compliance, it just seems like we need to make it easy as possible for people to find a decent mask. Yes, telling people what to do isn't ideal but it wouldn't be necessary if this was being done, right?

I guess what I am trying to say with all my rambling is there are situations where patients have responsibilities as in the case of sleep doctor number one that I dealt with. But in other cases such as mask sizing issues, patients are not at fault and as a result, that is why I feel this bill is needed.

Thanks for bearing with me.

49er

[ChicagoGranny]

Just skimming through a few posts this exercise sounds like it might have great value.

But permit me to say I learned a long time ago to be suspicious of lists laying out what others should do. That is what this mostly seems to be.

May I suggest that you take all of the items and turn them around so that patients would have a list of their responsibilities?

Ducking,

Some good thoughts that deserve high credit and I give you two out of three points.

1. Agreed: There is much in these posts that can be valuable.

2. Agreed: It is not a "bill of rights". A bill of rights expresses what the holder of the rights may do. It does not say what others must do except not to interfere with the rights of the holder. For example, a patient has the right to change doctors, use a DME other than the one recommended by the doctor, tweak their own pressure, etc. These rights do not tell others what to do.

3. Disagreed: Patients list of responsibilities. The patient certainly has a lot of responsibilities but what I see in this thread is a laying out of the standards for care that patients are demanding. My proposal would be to drop the incorrect title, "Bill of Rights", and call it something like "Standards of Care for Sleep Apnea Patients".

It would also be a good idea to have a corollary document, "Responsibilities of Sleep Apnea Patients". Both sides have skin in the game.

So Sleep2die4 I give you an extra point for bringing up the topic of patient responsibilities and your final score is 3 out of 3.

No ducking here. Let em fly.

[ChicagoGranny]

However, as a backup plan, I have thought about purchasing the Quattro FX. But I can't find a bleeping sizing guide and I need this since I don't have health insurance and can't go to a DME.

Here is the sizing guide - https://5faacd0c97cf0d23c6dc-064f3cd61b ... mplate.pdf

It is easy for me to find but I agree for a new patient who is sleep deprived it might be nearly impossible.

One of the problems is patients are getting diagnosed way too late and only after they are in bad shape. But I don't believe this is unique to sleep apnea.

A friend who is diabetic and very well read on the subject told me that a diabetic patient typically has type 2 diabetes for 6 to 10 years before he is diagnosed. It is also the case that many heart attack patients have several heart attacks before they are diagnosed. My own cousin in May had arm pain for several days and finally went to the doc who gave him a cortisone shot in the arm. 36 hours later the pain got so bad and other symptoms cropped up and they air lifted him for a stent. Once the stent was in the pain in the arm immediately disappeared. BTW, he recovered very quickly and is doing fine.

[Todzo]

Todzo,

I feel like the speaker who is coming in after the previous person electrifies the crowd. Once again, you hit a home run with your speech. Actually a grand slam:)

Anyway, to address sleep2die4's post, yes, patients have responsibilities, no question about that. For example, part of me feels like I should be complaining to the appropriate person at the hospital of the 1st sleep center I received services at after a very poor experience with a sleep doctor. But for various reasons that are too long to get into, I have chosen not to do it. I don't feel good about my decision but for practical reasons, I am making the best choice I can.

But here is an example of why this bill of rights is so important. As everyone may or may not know, I am interested in purchasing the Amara full face mask when it comes out.

However, as a backup plan, I have thought about purchasing the Quattro FX. But I can't find a bleeping sizing guide and I need this since I don't have health insurance and can't go to a DME.

Ok, call the company, no big deal. But you multiply this situation several times over and it is exhausting, particularly since cpap treatment is not working for me right now.

I mean, if the mask is the key to cpap compliance, it just seems like we need to make it easy as possible for people to find a decent mask. Yes, telling people what to do isn't ideal but it wouldn't be necessary if this was being done, right?

I guess what I am trying to say with all my rambling is there are situations where patients have responsibilities as in the case of sleep doctor number one that I dealt with. But in other cases such as mask sizing issues, patients are not at fault and as a result, that is why I feel this bill is needed.

Thanks for bearing with me.

49er

Hi 49er!

"2. Assuring that people with OSA are treated with understanding and dignity."

I do understand not being able to bring myself sometimes to deal with the most simple things, let alone something totally unfamiliar and complex. It is easy for those not affected by our disease to use our disease to make themselves feel strong at our expense. So when we go even to the doctor or DME, if available, we end up being treated like a lazy child when indeed we are honest women and men with a cruel disease. This is one thing I really hope to deal with totally!

I see no need to "bear with you" 49er, but please let us walk together toward understanding of one another and move toward the goal of being understood by our fellows and given proper place.

Let us become honest friends,

Todzo

[asleep@thewheel]

GREAT NEWS!!

We are working on making the worldwide sleep apnea patients round table in Rome this summer via webcast.

I will post all the the technical info as soon as its made available.

let's keep this conversation going....

[Rogue]

I'm from the Philippines, and would like to have cpap machines brought it at no or lower taxes.

I just dont know how your organization can help since taxes for each country cannot be changed by others.

my machine would cost around US$1300.00 an and am sure that the additional cost is not just income but also importation costs.

[49er]

Hi Chicago Granny

Here is the sizing guide - https://5faacd0c97cf0d23c6dc-064f3cd61b ... mplate.pdf

It is easy for me to find but I agree for a new patient who is sleep deprived it might be nearly impossible.

Thanks for thinking of me but I was looking for the one for the Quattro FX as this is for the mirage. The one for the Mirage may work for the quattro but I would want to be sure about that.

Also, for what it is worth, I did try this out of curiosity since I have the mirage. Perhaps I was doing it wrong but according to this guide, I needed a petite small. my current mirage mask is a medium which seems to be the right size.

Anyway, kudos to Resmed because someone left me a message regarding this issue that I missed on my cellphone. I had sent an email about this.

49er

[ChicagoGranny]

Thanks for thinking of me but I was looking for the one for the Quattro FX as this is for the mirage. The one for the Mirage may work for the quattro but I would want to be sure about that.

According to the ResMed literature they do not match. Sizing instructions for FX here - https://www.cpap.com/productpage/resmed ... ear.html#d

[Wonderbeastlett]

I have to say I disagree with a list of patient responsibility for many different reasons. First, if I am paying my money, through deductibles/out-of pocket etc, I should be entitled to informed, timely healthcare. These are not just people but professionally trained caregivers. It is their job to care for people's best interests.

Second, although people have responsibility to be pro-active about their healthcare, it's not always that simple. Most of the time you go to the doctor without knowing what's wrong with you. You don't always know if your receiving quality care unless you work behind the scenes. If were talking about generalized rights, then only you can decided if you feel you've been treated well. I know as a new patient to OSA, I didn't realize I was given poor treatment until after I went home. I realized I had no clue how to make my mask stop leaking. All I was told was to pull my headgear tight! We have a wealth of information available to us now but that shouldn't make caregivers lazy.

Thirdly, I feel like a patient responsibility list would give facility's more rights to refuse service. I know there are laws in place to prevent that. I would be upset if I went to the dentist and he asked,"Have you flossed 3 times a day for the last 6 months?" Then after saying no he refuses service to me. Laws are not always constant and I feel like a patient responsibility list would open up doors to change for the worse not better.

Basically, My huge speech has lead to this, a bill of rights protects the patients best interests. If every facility was 100% perfect and honest, we wouldn't need a bill of rights. It's very important to know your rights as a paying patient are not being overlooked just because they can be.

[ChicagoGranny]

.. promoting an organized adversarial approach toward our doctors and other care providers.

You are free to take that position.

Personally I have always achieved better results with a persuasive and cooperative approach and taking full personal responsibility for my health.

I cannot imagine the day that I would say to a care provider, "It is my right ..."

If it came down to that, I would hold my words and find another provider.

I want providers who are practicing with my interest in mind and not practicing for fear of violating some demanding document.

[Cpaprt]

All pap devices should be set-up by a respiratory therapist who is not associated with a drs office or sleep lab. This RT should have to have a certification to set-up pap equipment and the right to change pressures on a patients unit based on the patients response to therapy.

Manufacturers should not produce equipment without efficacy data.

Patients should be instructed on use of equipment in an individual 1 hour cpap 101 course. No group sessions! (family members and/or partners permitted in course).

Patients have the right to be educated and informed about what SA, what their pre-cpap ahi is and where the post-cpap ahi should be.

Patients should be placed on wireless modules for minimum of the first 90 days of therapy.

Patients need to reasonable in their length of time it may take them to become acclimated to therapy. (wearing a mask for 20 minutes and calling it a failure is not acceptable.

All insurances have the same qualifying guidelines. Patient to be responsible for understanding their insurance policy allowable for services. Provider of equipment to provide billing codes to patient so that patient an verify allowables. (most companies will not put these in writing for the patient because insurance contracts are always changing).

[asleep@thewheel]

All pap devices should be set-up by a respiratory therapist who is not associated with a drs office or sleep lab. This RT should have to have a certification to set-up pap equipment and the right to change pressures on a patients unit based on the patients response to therapy.

Manufacturers should not produce equipment without efficacy data.

Patients should be instructed on use of equipment in an individual 1 hour cpap 101 course. No group sessions! (family members and/or partners permitted in course).

Patients have the right to be educated and informed about what SA, what their pre-cpap ahi is and where the post-cpap ahi should be.

Patients should be placed on wireless modules for minimum of the first 90 days of therapy.

Patients need to reasonable in their length of time it may take them to become acclimated to therapy. (wearing a mask for 20 minutes and calling it a failure is not acceptable.

All insurances have the same qualifying guidelines. Patient to be responsible for understanding their insurance policy allowable for services. Provider of equipment to provide billing codes to patient so that patient an verify allowables. (most companies will not put these in writing for the patient because insurance contracts are always changing).

Great Suggestions except for one major important distinction. The sleep doctor who has the experience in diagnosing OSA should set the pressure or range for PAP therapy that the patient needs to get to. The RT should help guide the patient about how to get up to that pressure or range.

In my case , my titration study suggested that I should be at a pressure of 8 and I weigh 200lbs. Sarcastically, my 4 year old daughter who now weighs 40lbs is at the same pressure. Does that make sense? I eventually was trained to get acclimated to APAP at a range of 15-17 with an AHI below 2 most nights. Considering I was at an AHI of 150. I will take that. The real issue is finding the doctor who has the knowledge/experience to determine what pressure you need to get to regardless of what a one night PSG says. A great sleep doctor can diagnose just upon an initial visual evaluation and should know what pressure you need to keep your airway open most importantly so you don't stroke out.

It takes at least 10 months for a patient to reprogram your sleep architecture once PAP therapy begins. Some of the damage is reversible and some is not.
That is when a proper sleep psychotherapist should intervene.

[robysue]

It takes at least 10 months for a patient to reprogram your sleep architecture once PAP therapy begins. Some of the damage is reversible and some is not.

This is a point that is all too often lost. Even sleep docs tend to lose sight of the fact that it can take a very, very long time before we're sleeping better.

My first sleep doc told me: You don't need a full data machine. And don't worry about adjustment problems. You'll feel better in two weeks.

It was a full 9-10 months before I started to feel as well ON PAP (on a day-to-dat basis) as I did before starting PAP. But by about 12-15 months into therapy, I finally was feelinng BETTER with PAP than I had before PAP.

[chunkyfrog]

Automatic machines need to be available, at least to confirm titration levels; I found I was titrated 3-4 cm too high.
No way I could spend a week in a sleep lab to do that.

[Todzo]

Automatic machines need to be available, at least to confirm titration levels; I found I was titrated 3-4 cm too high.
No way I could spend a week in a sleep lab to do that.

Profoundly good point!!!!!!!

Our bodies are dynamic, so all of our sleep and breathing parameters are indeed dynamic.

If you think about it this explains the 25% false OSA negative diagnosis that have been found in good certified sleep labs.

Does anyone really believe that treating OSA will not change the very body they treat!?!? So then all of sleep test parameters will change especially if the treatment is successful. I know it does. Very much it changes that body as much as not treating the OSA will change that body. After monitoring my data for a couple of years, reading thousands of posts on these forums the truth is obvious. Our bodies are different every night, week, month, season, year, and decade. You cannot hit a moving target with a locked down gun!!!!!

Yet a "single super expensive shot in the dark" is still the "gold(en) standard". No, it is a bad standard and we very much need to move on.

I am glad to see that in home testing (I hope they eventually see the need for several nights – not one) along with auto-PAP titration actually does a bit better at getting the initial settings in recent trials.

But then we have the next hurdle! The absolute need, and I very much believe this should be required by law, for constant monitoring ALL of the time the PAP therapy is used. After doing my own monitoring for a couple of years I believe that anything less is simply medically irresponsible.

I spend about an hour of my week looking my data over and planning the changes I need to make in my lifestyle to keep all of the parameters in check. If I did not do so I could be in trouble inside a week, trying (and probably failing) to call the doctor within a month, and in a hospital or morgue within six months.

In talking with my ex-sleep doctor about this, his point is that a person who is getting sick will feel sick and call him. So why then did it take a person in shelter with me to sit me down, tell me what I had, and earnestly plead with me to go to a doctor to get me to a doctor?!? Now I understand that my functioning was compromised by Severe Obstructive Sleep Apnea with Extreme Hypoxia. Then I simply had no idea. Exhaustion was “normal” to me. Oh yes doc, they will call you – from a hospital bed, well now, at least - those that still live!!!

Yet I cannot do this well with the software provided by the company that makes the device. And last I checked their plan was to not produce any software for their new line of machines!!!! There seems to be a wall they are building between the patient and his own data!!! Honestly, it is our data, and we really do need it now!!!

But I suppose many would not be able to use all that data. I love things like that but I am one of those strange geek types. One company that I know of has developed the hardware and software to automatically gather the night to night PAP data of their clients and automatically analyze that data and flag problems for follow up immediately. So that we all can be as healthy as possible this needs to be done for all!!! Certainly, for those who, like me, would use the data to help keep their lifestyle in check, just as I need my Blood Pressure data and Blood Sugar data I need my full (Minute volumes and all!!!) PAP data to help me to live healthy. Real feedback is a good guide for my real life.

Yes indeed you bring up a good point!

Todzo