Recently diagnosed, longtime lurker, my experience and what I have learned

[Stackoverflow]

Hi,
I just wanted to post and give a massive thanks to everyone on this forum. The information I have found here has been instrumental in getting myself treated and has helped me make decisions regarding my treatment and how I want to proceed. I was hoping I could give back some by sharing my story as well as problems I ran into or stuff I learned so that others may be able to read this while in the process of first getting treatment and avoid any mistakes I made. So here it goes:

I am a 23 year old software engineer from Ohio. I don't fit the stereotypical profile of someone who might have sleep apnea. Im not overweight, do not have a large neck, and I am otherwise entirely healthy. I do snore, however I thought this was an entirely normal thing.

Starting around 19 or 20, I started waking up gasping in the night feeling very light headed and like I was about to pass out. This was of concern to me but I just wrote it off as anxiety and probably bad dreams due to taking other medications. Fast forward to today, and I am out of college and living with my girlfriend. I was still waking up gasping and had a few episodes where I was convinced I was going to die. Those were enough to get me to the doctor (see lesson 1).

My primary care physician told me it sounded like sleep apnea and referred me to a sleep doctor. I went to the sleep doctor and he said I needed an in lab sleep study. I knew these to be the gold standard of sleep testing and agreed.

While waiting on my insurance, I found a nifty little device called a Lookee sleep ring. This ring tracked my spO2 and heart rate nightly and has a vibration alarm if your oxygen levels drop below a preset level you can pick. I started using this and noticed my oxygen saturation was dropping to the low 80s before each of my episodes and each drop i could also see a spike in my heart rate. This let me know almost for sure I have sleep apnea because I clearly wasn't breathing properly.

My insurance, united health care, said the in lab study wasn't medically necessary and said I should get the home test instead. This really worried me as I was afraid if I didn't have a bad night, because home tests are less accurate, my apnea would be missed and I would be stuck like this forever (see lesson 2). I took the sleep study (Alice from phillips) and was supposed to wait for three weeks for them to get back to me. I was panicked at this because at this point I knew I had apnea and I had the data to back it up. I knew leaving it untreated I would have more episodes over the three weeks and couldn't stand that thought. I called the sleep doctor immediately and they got me in two days later. The doctor let me know I definitely had sleep apnea (AHI is 55) and recommended an in lab titration to get a pressure for cpap.

The problem was, again, I didn't want to go more weeks being afraid to go to bed and I asked for APAP titration instead. He was very against an APAP titration and after enough calling them and arguing I finally got them to agree to give me the APAP for titration. I had to wait about an hour to have a two minute phone call with the doctor for him to say it was ok. This was the first sign that I got there wasn't something right with the doctor I was going to. It was upsetting to me the APAP titration option wasn't made readily available to me from the start and I had to fight for it. It felt like it was more about money than anything.

After the first night, I felt better than I have felt in years and didn't need to nap during the day. I got more work done in half a day than I was getting done in a full day previously. Because my job requires a good deal of thinking and attention to detail I had to go slower because I was always sleep deprived and had trouble focusing without a good deal of effort. This was LIFE CHANGING. What everyone said is correct.

About 5 days after getting the APAP the doctor had me return it and prescribed me a cpap at 14cmh2o. I bought the machine, a dreamstation cpap, from them because I didn't really have a choice and I wasn't going back to feeling the way I had felt while waiting for an online order. I found it odd they sold them directly out of their office and also was handed a business card for a website and the RT said that it would be cheaper to order future supplies online from there. I noticed while she was ringing me out it looked like she was directly checking me out on the website she had the business card for. Again, kind of a red flag but I thought hey, maybe they just check people out through the site and the site gives them the money agreed to or whatever. I took the machine home and had a terrible night. It wasn't the machines fault, but I definitely had the incorrect pressure. I had one of the worst episodes I had ever had and it scared the heck out of me.

This is where things started to go a bit sideways. I thought when I bought the dreamstation I could use it with OSCAR and I would be able to tell if my pressure was too low or too high. I popped the SD card out and opened OSCAR. Much to my dismay, I found out that despite them telling me this was "data capable" it only tracked very basic information. Oscar let me know they gave me a "brick" for 800 bucks. Not great.

At this point I needed something to get fixed because I was again afraid to go to bed. I called the doctors office first thing in the morning and got no answer. I tried calling again an hour later and no answer. I called about 20 more times trying to get ahold of someone and finally was told "the doctor is having a bad day and won't be able to help you today." They also let me know they couldn't adjust anything without him. I asked if I could just return the machine because I had it less than 24 hours and it clearly didn't work for me. I wanted the APAP back because that worked for me. The RT said they didn't take returns and I was effectively out $800. At this point I was pretty angry and called my PCP to get him to write the script so I could just go buy one myself (I live near a cpap shop). I also let them know how I was being treated by the doctor they had referred me to. Unfortunately my PCP wasn't comfortable writing the script and couldn't help me.

Finally today I got a call from the sleep doctors office and he agreed to give me the APAP and give my money back for the machine that didn't work. Something still didn't sit right with me though. I didn't understand why they wouldn't take a return and recommended an online company I had never heard of when there are a few great online companies they should have recommended without question. Well, I looked up that companies address and guess what, its a PO box down the street from my sleep doctors office. At this point I was pretty convinced I knew who owned that company. I looked up the LLC registration and my guess was right, it was the sleep doctor I was going to and he didn't sell APAPs on his site. This all feels super unethical and at no point did they ever disclose to me the doctor who was treating me also had a financial interest in what machine I was buying.

I went to the office, returned my machine, and I went to the local cpap store and bought a fully data capable dreamstation auto with no issue. I also got a referral to a new doctor from my PCP and will never be going back to those criminals again.

Excited to continue my treatment and continue feeling better.


So here are my lessons learned:
1. Don't wait to go to the doctor. I know some of us hate going to the doctors office. I avoid it like the plague because I'm always scared of what I might find out. Trust me when I say the trip is worth it. Your health is worth it and you are worth it. Do it even if it sucks.

2. Don't be discouraged by insurance requesting the home test. It might work or you might need an in lab. But the point is no matter what happens, don't get discouraged. Jump through the hoops if you have to to get what you know you need. The home test caught mine and it might catch yours too.

3. Knowledge is power. This form provided me with a huge amount of information I was able to use to make better decisions about my treatment and I knew my options. Know yours too. If you know the information you are well armed to fight your battles to get what you need.

4. If you see a red flag, don't write it off, run. The doctor I was going to was clearly prioritizing his own finances over my health and was very unethical. Please, don't be afraid to fire the doc. And don't wait until you are in a stressful or terrible situation when you could have seen it coming by heading the red flags.

5. Don't settle on your first mask. My first mask was a resmed Quattro fx and it was ok but leaked at the bridge of the nose. The f30 fit my needs much better and im glad I asked for that as opposed to just settling on a mask that kind of worked.

6. Give back. These forms are a fantastic resource and I'm sure have helped so many get better treatment. I will continue to post and be active here in hopes of helping other people like me. You should do the same.

7. Be careful of what machine you buy. Check before you leave the DME or office or wherever you get your supplies that the exact model is compatible with oscar. See lesson 3, knowledge is power.

8. On top of these forms there are some good YouTube channels out there like thelankylefty amongst others that have really informative videos.


Finally, be the advocate for your health. Do whatever it takes. You are worth it.


Cheers and thank you to everyone on these forms again, know you have truly made a difference.

[khauser]

The fact that there is a stereotypical sleep apnea patient stops far too many people from seeking help. There are so many different types of people here that the only thing I know for sure is it strikes all types.

Congrats on your progress, and welcome! Fantastic job of being your own advocate. I wonder about the ethics of using his own company without disclosing such. I would suggest touring that ... and I'm not the type to usually do that.

[Julie]

Hi - great story and lessons.

Only add I would make is please use paragraphs - it's so hard to read as one block (I copied it to a sticky and broke it up to read).

[Stackoverflow]

Thanks guys. Sorry for the giant block, writing from my mobile so I kick into texting mode quickly.

[Stackoverflow]

Also I agree it really is sad there is a stereotypical sleep apnea patient. Sure certain things can put you more at risk, but you are correct anyone can have it. Heck they might not even know they do either. I hope that doctors and insurance companies realize that just like any other disorder, everyone is at risk.

[boxofrain]

WOW! Great story and great writing. I thoroughly enjoyed reading your adventure. I am just so sorry all of this had to happen to you... seem like such a good guy. It's too late now, but with all of your knowledge and through the help of this forum, maybe you could have found a great deal on a machine for $300 or so on a Craigslist or similar classified ad platform. And like khauser "implied" you could potentially have a malpractice or ethical case against this quack. Good luck and keep us informed.

[chunkyfrog]

I only use an 8" tablet.
Even with a worsening tremor, I do manage.
Excuses do not fly.

[Stackoverflow]

WOW! Great story and great writing. I thoroughly enjoyed reading your adventure. I am just so sorry all of this had to happen to you... seem like such a good guy. It's too late now, but with all of your knowledge and through the help of this forum, maybe you could have found a great deal on a machine for $300 or so on a Craigslist or similar classified ad platform. And like khauser "implied" you could potentially have a malpractice or ethical case against this quack. Good luck and keep us informed.

Thanks, just hoping to provide encouragment to others who may not actually be a member of the form and in the earlier stages of my current situation.

I do feel what the doctor did here is a huge ethical violation. I wouldn't think that if they disclosed to me from the start the business relationship and financial interests, however I was totally unaware without having to do some serious digging. The fact I had to call them about 20 plus times to get an answer that I wasn't going to get their help is cause enough for concern. It felt very dehumanizing.

I don't want to sue or anything, but I am strongly considering writing the state medical board so they can make note. My situation turned out fine, but I feel for those who may be stuck with him due to insurance or other factors. I probably could have found the machine cheaper, but I am blessed in that money isn't really a huge problem for me right now, and time was of the essence so I just popped over to the local shop and picked up my new machine.

Read my oscar data this morning and I'm down from 55 AHI to 4 so I would say my treatment is effective and will be even more effective with some fine tuning and lowering my EPR (set at 2 right now).


Thanks for your reply and thank you to everyone once again. I am incredibly greatful. I don't think the people on here truly understand what a great resource this is that they help provide.

[Pugsy]

Where are you located?

In the US it is prohibited for doctors who prescribe cpap to also dispense equipment to Medicare patients. Obviously you aren't Medicare and it is fairly common for sleep labs to also dispense equipment. Nothing illegal about it unless insurance prohibits it.
Now the fact that they hid it...it stinks for sure and does send off alarms especially if they maintain a separate address for machines....makes me wonder if they did that to get around Medicare limits. My thought is why the separate address.....alarm bells going off for potential sneaky stuff.

Then they sold you the brick which also stinks. Did you use insurance at all for the brick machine? Or were you a cash paying patient even for the brick?

Now outside the US.....all bets are off.

[Stackoverflow]

Where are you located?

In the US it is prohibited for doctors who prescribe cpap to also dispense equipment to Medicare patients. Obviously you aren't Medicare and it is fairly common for sleep labs to also dispense equipment. Nothing illegal about it unless insurance prohibits it.
Now the fact that they hid it...it stinks for sure and does send off alarms especially if they maintain a separate address for machines....makes me wonder if they did that to get around Medicare limits. My thought is why the separate address.....alarm bells going off for potential sneaky stuff.

Then they sold you the brick which also stinks. Did you use insurance at all for the brick machine? Or were you a cash paying patient even for the brick?

Now outside the US.....all bets are off.

I am in Ohio. So yes, within the US. The separate address and lack of disclosure was what concerns me. Even if it isn't outright illegal, it certainly seems against what normal ethics would be in this situation. I did buy the brick with insurance, however, I paid for all of it because I had not yet met my deductible. With that being said, they did issue me the refund this morning so I'm not out the money. Regardless, I think the state board would probably frown upon a doctor advertising his own personal business without disclosure of ownership, as well as that impacting treatment based upon what he sells. Now, would that stand up if they tried to take his license, I doubt it. He could simply argue he was doing what he thought was best regardless of his personal business and I'm sure there isn't much anyone could do to prove otherwise.

I just checked their website, and it says they take all forms of medicare. So he is probably breaking some rules.

[Pugsy]

To be clear they could legally deal with Medicare as long as the doctor isn't involved in prescribing the equipment.
Obviously he probably is and that's why it is hidden but the prohibition is just against the prescribing physician or any of his family members having a financial interest in the business that is supplying the equipment.

There's nothing legally stopping them from supplying to Medicare patients that are prescribed equipment by doctors outside this doctor's practice. Since you aren't a Medicare patient we don't know for sure what he is doing but yeah....it stinks.

I am not surprised that when your insurance was involved that they dispensed the brick. Insurance companies pay by HCPCS billing code and the billing code for the brick is the same as for the APAP you ended up purchasing. They get the same amount of money for the brick as they do the apap but the brick costs them less wholesale so guess what they make more money on. Common DME tactic and they tell people that "this is all your insurance will pay for" which is a bold face lie. You are well rid of them.

I have no way of knowing how your own insurance might feel about a doctor having a financial interest in a DME supply company. They might not care or they might not like it. It all depends on the insurance company.
Now it might be legal by definition but that doesn't necessarily make it ethical especially in view of the fact they hid the address.
There are sleep labs all over the country that dispense cpap machines but they are up front about it and there's nothing wrong with it as long as they are up front and/or Medicare isn't involved.

To my thinking if it walks like a duck and quacks like a duck...it's probably a duck. They hid the address for a reason.
They could legally have been up front about it and all they had to do is if you were a Medicare patient advise you that they couldn't supply you with the equipment since they were the prescribing facility/doctor. That happens all the time.
Now would your insurance have cared or not....dunno. Like I said...some do and some don't.
Now if you were a Medicare patient...we sic Medicare on them as in Medicare fraud and they get in big trouble... And I would do that in a heartbeat. Without direct proof of illegal transactions though...not much can be done.

[Stackoverflow]

To be clear they could legally deal with Medicare as long as the doctor isn't involved in prescribing the equipment.
Obviously he probably is and that's why it is hidden but the prohibition is just against the prescribing physician or any of his family members having a financial interest in the business that is supplying the equipment.

There's nothing legally stopping them from supplying to Medicare patients that are prescribed equipment by doctors outside this doctor's practice. Since you aren't a Medicare patient we don't know for sure what he is doing but yeah....it stinks.

I am not surprised that when your insurance was involved that they dispensed the brick. Insurance companies pay by HCPCS billing code and the billing code for the brick is the same as for the APAP you ended up purchasing. They get the same amount of money for the brick as they do the apap but the brick costs them less wholesale so guess what they make more money on. Common DME tactic and they tell people that "this is all your insurance will pay for" which is a bold face lie. You are well rid of them.

I have no way of knowing how your own insurance might feel about a doctor having a financial interest in a DME supply company. They might not care or they might not like it. It all depends on the insurance company.
Now it might be legal by definition but that doesn't necessarily make it ethical especially in view of the fact they hid the address.
There are sleep labs all over the country that dispense cpap machines but they are up front about it and there's nothing wrong with it as long as they are up front and/or Medicare isn't involved.

To my thinking if it walks like a duck and quacks like a duck...it's probably a duck. They hid the address for a reason.
They could legally have been up front about it and all they had to do is if you were a Medicare patient advise you that they couldn't supply you with the equipment since they were the prescribing facility/doctor. That happens all the time.
Now would your insurance have cared or not....dunno. Like I said...some do and some don't.
Now if you were a Medicare patient...we sic Medicare on them as in Medicare fraud and they get in big trouble... And I would do that in a heartbeat. Without direct proof of illegal transactions though...not much can be done.

Yep no proof of anything. Things turned out in my favor just considering myself lucky and moving forward.The data capable machine is the greatest thing, being the tech nerd I am. I feel in control of my treatment now. Working on narrowing in my settings.

[Thumper1947]

Stack,
Does the Lookee ring work with Oscar and show in Oscar data, or do you have to use them independently? Great info, thanks.
Thumper