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Questions after diagnosis

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Ruby +0 points · 11 months ago Original Poster Sleep Commentator

Looking through all of the posts, it is obvious that most are questions that should be asked of the medical community. Don't get me wrong, I'm glad questions are getting asked and hopefully answered. I just wonder why those questions haven't already been answered. If you feel so inclined could you answer some questions for me?

When you were first diagnosed, how much information did you received about sleep apnea?
Who gave you that information? Where else have you gone for information? Was there any support for questions or issues after? Were you told about other options than a CPAP machine? Were you given options on what machine or mask you used?

I don't need your life story (unless you just want to share and that's fine too). In my case, I was told this is what I had and this is what I would use. At that time I didn't know enough to ask questions and felt completely alone and ignorant. Not a good feeling. Since then, I've been doing more research on my own and asking for help on forums. I just wanted to know how much help you received after being diagnosed.

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bonjour +0 points · 11 months ago Sleep Commentator

When you were first diagnosed, how much information did you received about sleep apnea? You have Sleep Apnea and you need a CPAP Who gave you that information? The Sleep Clinic Where else have you gone for information? I didn't know of anyplace, nowadays the internet. Was there any support for questions or issues after? No Were you told about other options than a CPAP machine? No Were you given options on what machine or mask you used? None

I was told it would take 6 to 8 weeks to get my machine by my DME. I said that was not acceptable and I would drive (that was dangerous) anywhere to pick it up asap. My Rx was for 19 cm CPAP. My machine would not go over 18 and was told it was OK

I find that the old pro users on the forums have at least as much knowledge as the medical pros and frequently spot issues that the pros miss. especially since all most pros look at is summary and compliance data.

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Sierra +0 points · 11 months ago Sleep Innovater

When you were first diagnosed, how much information did you received about sleep apnea?

Very little. The clinic used a Phillips NightOne at home system. They gave me just enough info to do the one night trial with it. My wife had been diagnosed 3 years before me, and I thought I knew a fair bit. I should have done more research on it before going in for my diagnosis. For example I knew there was a difference between central events and obstructive, and asked what my breakdown was. She told me, and I did not know enough to ask any follow up question like "how likely are my central events to be treated with a CPAP?" She also told me that a CPAP was likely to cure my type II diabetes, which is total nonsense.

Who gave you that information?

In the clinic my GP doctor sent me to, there is no doctor. I think the company uses a contract doctor to read the sleep study and make the diagnosis. I think I figured out he resides in another province a few thousand km away. Obviously there was no opportunity to talk to him. There is a sleep technician at the clinic which talks to you, but I suspect based on what she told me, she has pretty minimal qualifications.

Where else have you gone for information?

The internet is invaluable. The only trick is in being able to distinguish between credible sources of info (about 2%), and the 98% which is not so credible, and mainly a sales pitch for something. A start is to focus on the .org sites, and not the .com ones.

Was there any support for questions or issues after?

I went back once after getting the trial machine from them. That was only to return the trial machine and tell them I was not buying it for $2400. From my wife's experience I knew ahead of time that I was never going to stay with the clinic, and was just going to buy the machine and mask package on line for $800-900. Not surprisingly they didn't want to talk to me much, after I told them that.

Were you told about other options than a CPAP machine?

I was aware ahead of time of the dental appliance option and had done enough of my own research with my diagnosed AHI of 37 that I knew I was not going down that road.

Were you given options on what machine or mask you used?

No, there was no option. I was given a ResMed AirFit P10 mask and a Fisher & Paykel SleepStyle machine to try free, and buy at $2400. Based on my wife's experience with a ResMed S9, I knew I was going to buy a ResMed. The SleepStyle machine was a brand new model, and not supported (and still is not) by SleepyHead. And worse still I believe it is unable to distinguish between central and obstructive apnea events. It increases pressure in response to both, and can't give you a breakdown of the apnea event types. Fortunately I was able to exchange machines with my wife during the trial and collect enough SleepyHead data to know how to set up my new AirSense 10 AutoSet when I got it. I do have to give her credit for the P10 mask though. I am about to try my 6th mask, but so far the P10 has worked the best. It is also one of the cheapest masks, so that may have been the real reason for the choice!

In short that is how I have gotten to where I am. Treatment of my mixed central and obstructive apnea has not been easy. It has taken me 9 months to get AHI under 2.0, and get a fairly restful sleep. And, there is still room left for improvement. There is always one more mask and pressure setting to try!

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Turquoiseturtle +0 points · 11 months ago

I felt like the sleep clinic was responsive and answered all my questions when I was first diagnosed. I had no choice of machine, but the Airsense 10 Auto seems to be highly recommended. I had many mask choices to try, and clinic staff took time to help me make a good choice. I took to therapy easily, and results were good. For over a year the AHI was around .5. Then I started to get some spikes; weeks where AHI was around 4-6. They did not want to talk to me because the average was still below 1. But I wanted to understand why I could have a week like that, 10x what was my normal. Now that I know more, I have new questions. Just because #s are good, I can not get an appointment/answers.

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Biguglygremlin +0 points · 11 months ago Sleep Commentator

Some good questions Ruby.

My wife had been harassing me for ages about apnea but it was only when I was desperately tired and in a perpetual fog and waking up feeling like I had been run over by a bus that I actually looked up the subject on Google and learned about OSA and the consequences.

I went to my local doctor and she asked about symptoms and gave me an Epworth Sleepiness Test to fill out and informed me that I would need a sleep test to access the hospital sleep specialist. She suggested (because of cost) that I hire the equipment from our local pharmacy and gave me a request form.

I got the machine that same day with basic verbal instructions on how to set it up and the next morning I took it back to the pharmacy.

2 days later I received the report which I immediately took to my doctor.

She gave me a referral to the hospital sleep specialist and rang him to request an urgent appointment.

I got an appointment within 3 days and he simply reviewed the sleep report and filled out a bunch of papers then told me to go see the sleep clinic people.

He told me briefly about the purpose of the pressure and the impact on central events of going too high and the problems with the digestive system.

I told him that I was about to leave the state so he noted on the prescription (which simply said start at 12) that they should show me how to access the clinical settings on the machine.

I went straight from the hospital to the sleep clinic and picked up the test machine and mask with a brief demonstration of function and took it home. The next day I flew out of state and began the process of figuring out masks and settings.

That was a week after first raising the subject of apnea with my doctor.

I returned with the machine a month later and was handed a new machine and mask of my choice all still in their boxes. I took them home and set them up to the specs that I had reached by trial and error.

I had no choices when it came to the machine but I did insist on the mask that I wanted.

I don't feel that there has been any real followup or support but that may be largely my fault. I am certain that the normal pathway and support systems are there for most people here although they do take a lot longer to get there.

I have since done the usual research into masks and such and dropped into various sleep clinics to check out their gear.

After 4 years of going it alone I had issues that I couldn't find the answers for and so I came to this forum.

I will probably linger for a while longer because it is fun then try once again to get back out into the real world.

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sleeptech +0 points · 11 months ago Sleep Enthusiast

It really bothers me that some doctors, who get paid so much, can be so negligent in their obligation to educate their patients. I have a friend who is being treated for cancer. Her doctor told her she needs a second round of chemo. She was very unhappy about this and didn't want to do it, so she got in touch with a charity which supports young cancer sufferers. They connected her with one of their volunteers who organised another appointment with her oncologist, went a long to the appointment with her and made the doctor explain WHY she needed a second round of chemo. As soon as she had an explanation she was more than happy to go ahead. Seriously, why didn't the doctor do their job and explain it in the first place. Instead, there had to be a charitable organisation set up which trains volunteers who have to make extra appointments with doctors and be present at those appointments just to get the doctor to do EXACTLY WHAT THEY SHOULD HAVE BEEN DOING ANYWAY!

This is why I often advise people on this forum to make your doctor answer all your questions (or at least direct you to someone who can) or get a new doctor. They are paid massive amounts to do their job, so make them earn it.

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Ruby +0 points · 11 months ago Original Poster Sleep Commentator

These are the sort of answers I am looking for. Please keep them coming. I'm not sure where I am heading with this but I'm going somewhere! Anyone who wants some virtual travel, come on along.

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Sierra +0 points · 11 months ago Sleep Innovater

I think one thing to consider is that the apnea treatment industry is not very old. It only goes back to the early 1980's and it was pretty crude back then. The discovery and use of insulin for diabetes in comparison started 60 years earlier. My observation is that the industry is in a state of major change. The method and who does treatment varies widely from country to country and region to region. Some treat it as a very serious disease, and others that it is an elective treatment.

In the US under the government and private insurance thumbs, it seems to be very prescriptive. The expectation is that you will do an in lab sleep study, if positive then an in lab titration test, a trial CPAP (not APAP), if that fails then an APAP, and If that fails a BiPAP, and if that fails than perhaps an ASV. In Canada we seem to be all over the map. Some provinces cover the cost. Some do not. Some will allow prescription from a home study test, and some will not.

And, then there is the industry politics and financial realities. In the province I am in, the cost of a CPAP is not covered by government health care, only private insurance. The government however has allowed in the home study sleep clinics without any requirement to have a doctor on staff as long as they consult one to read the test results. He(she) does not even write the final prescription. That is left to the GP that ordered the test. I doubt my GP really even knows what a CPAP looks like. These clinics cover their costs by charging exhorbitant prices ($2400) for equipment available on line for $850. This has the "old boy" in lab sleep clinic people who have invested in facilities to do the in lab and titration tests all upset. They have now lobbied the government to upgrade the standards to force these upstarts to have a doctor actually on staff, although it does appear to only be somewhere. They have also forced higher education standards for the technicians administering the testing, and dispensing the machines. Here is a link to the news story on it. The regulations are still not going to be in force for another couple of years or so.

The other problem in the industry, and that may be more widespread across countries is that the profit seems to be wrapped in the sale of a machine and frequent supplies at exorbitant mark up prices. The on line stores are cutting into their game. But, the issue is that they ideally want to test you, get a diagnosis and prescription for a machine, sell you and expensive machine, and then hope you never come back for help or have any questions.

My thinking is that the on line stores are here to stay, and the at home sleep study is going to become the first line of diagnosis, followed by an immediate trial of an APAP, not a CPAP. In the future this is going to drive down the cost of equipment sold by clinics and they are going to have to become more responsive to their patient needs. For example train them to monitor their results adjust their own machines, rather than keep repeating titration tests, and adjusting machines for patients.

Bottom line? One needs to look after their own interests. The better you understand how the industry works, and understand the basics of treating the condition, the better you can look after yourself. Just my thoughts...

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KangarooTailStew +0 points · 9 months ago

A great summary!

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obbyone +0 points · 11 months ago

I feel like I received little info and I had a problems with the pulmonologist 'cause he treated me so bad. I even reported him to the medical board but it was just a waste of time. Due to that nobody treated me for 2 years and nobody told me that my settings needed to be adjusted in my CPAP., Now I am screwed with Central sleep apnea, which is even worst than obstructive apnea.

Recommendation: Never quit seeing an expert even if you know that you are doing ok or feeling better with the treatment. 🙄

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Ruby +0 points · 10 months ago Original Poster Sleep Commentator

It is so very sad that the system works the way it does. I spoke in front of a group of very interested doctors and clinicians. I'm from the middle of nowhere. The agenda had all these people with letters after their names, teaching hospitals they were with, all sorts of amazing credentials. I was listed with my name and address. That's it. So before starting I told them that I had looked at this list of medical people and was totally intimidated. But then I said, "But you know what? I'm the reason you are here." And that's what we need to remember. This is our body, our lives and our quality of lives. We have a right to quality care and for the most part, doctors strive to give just that. BUT we need to know what that quality care consists of. The days of "doctor knows best and you don't question" are long gone. all you can so you can ask questions that will help you. Keep asking until you understand the answer. It is your body and you are paying for the doctor's time so get what you need out of it. I'm not saying to march in and demand (although sometimes you might have to) but try to build a working relationship with them. If I knew then (when I was first diagnosed) what I do now, things would have gone much smoother. I was actually told by one doctor, "You are smarter than you look." I left his office and never went back.

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Biguglygremlin +0 points · 10 months ago Sleep Commentator

I'd probably be dumb enough to take that as a compliment Ruby. :)

You are right of course.

We cannot go through life trusting that others know best and that they are applying logic and initiative on our behalf or even that they have the necessary knowledge and experience to help us.

This applies equally to everybody and everything that has the potential to impact on our lives.

I wish someone would tell me that I am smarter than I look. :)

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Ruby +0 points · 10 months ago Original Poster Sleep Commentator

Well, your posting name IS biguglygremlin! If that's what you truly look like then you ARE smarter than you look! But not matter what, I think you are pretty savvy on your posts.

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Biguglygremlin +0 points · 10 months ago Sleep Commentator

I adopted that name in anticipation Ruby way before it was a reality.

I guess that makes me a prophet too eh? :)

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4ntwenty +0 points · 7 months ago

I guess everybody has a story. Maybe some other time.

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