New & just diagnosed w/apnea by medical supply clerk??

[Janknitz]

I am concerned that a "supply clerk" let you know the diagnosis. That also means that the sleep lab or doctor bypassed you by sending your prescriptions for CPAP equipment to a DME without asking you your preference. It's not that you would have a preference at this point, but you can't even be certain that DME is covered by your insurance until YOU check.

Read my blog post "What you need to know BEFORE you meet your DME". Get a copy of your prescription and make a WRITTEN request for a copy of your sleep study. Then YOU decide which DME you want to work with, based on insurance coverage and finding one who will provide the equipment YOU want.

[Bill44133]

Welcome to the forum You are in a good place here. Work any issues you have out here. Lots of smart and helpful people here.

Take 15 minutes and review this youtube video it will help you understand what is going on with you:
https://www.youtube.com/watch?v=-gie2dhqP2c

This video put the whole thing in perspective for me. I was able to show this video to my family to help them understand what is going on me.


I wish you well

[Guest]

You weren't dx'd by a clerk just informed of the dx by a clerk. I am not defending your doc but don't think this practice is uncommon in the sleep business. I also don't know of any DME who will "ask you" which make or model machine you want UNLESS you take charge, right from the beginning. I know I insisted on a certain make & model when I went to a new DME and they put me thru some hoops which I met because I would not settle for anything less. But I knew what I wanted - when I was knew I had no clue.

You may have to go back to your doc more than once to get the script right. Take notes on what is required on a "make & model" specific prescription and don't give up. Get a copy for yourself.

[brianthenewb]

Hi Brian - welcome to the forum. I can relate to some of what has happened to you; I experienced a pulmonary embolism in January 2013- docs still have no idea why I had it - no trauma, no family history, no clotting disorders, genetic indicators, etc. Scary when the docs have no idea!

In June of this year, I went to ER twice due to sudden onset of intense dizziness. Had it every day of that month, at some level. Like you, I was afraid to drive/ leave the house for fear I would pass out. Again - docs have not been able to determine the cause to date.
In June, I had to change PCP's due to new insurance. New doc's office secretary told me "You don't have sleep apnea because you are born with it; if you have it, you've had it all of your life." (she stated this in front of the doc, and he agreed with her.) Yes - I wanted to slap the h*** out of both of them
New doc would not give me a referral for any specialists, nor for apnea test.
I changed docs by end of June, then had to wait til August to see new doc #2. I was tested and diagnosed with sleep apnea by end of August, and have been using cpap since end of August.

From your posts, it sounds like it may be of benefit for you to change PCP's when you are able. Also - have you ever been tested for a thyroid disorder or diabetes? These conditions (as well as others), can cause many of the symptoms you listed.

Most other members who have responded to you are giving you valuable information; keep reading There is a TON of useful information here, and great support from many users

Hi Sleepyeyes, thanks for taking the time to reply. Dang, that's scary! I've been worried that my DVT will travel to the lungs & become a PE, in fact, part of it might have. I had this weird heat sensation go from my leg to my chest and it took my breath away. I went to the ER again and they said no, my lungs are clear but never did any chest imaging, just did another ultrasound of the leg and he said wow, the ultrasound tech can could barely see any clot in my leg and it's really improved just a week after starting treatment. I said yeah, she couldn't find anything because it went to my lungs. He said even if that were the case, I'm on Xarelto which treats DVT/PE. I think your body is suppose to dissolve/absorb them naturally and the Xarelto just keeps them from getting bigger or new ones from starting...

No Diabetes or pre diabetes, and no thyroid problems. The retired PCP checked 3-4yrs ago and this year, the ER and PCP checked.

It is extremely scary not knowing what's going on with you and very depressing when the docs just say it's anxiety/panic or you're just find, it's all in your head...they may be right in some cases, but I think quite often they're wrong. One of my docs PA's on staff who just got a new job out of state saw me 4-5 times I think in about as many months and he was always telling me "You're just fine, nothing's wrong, you just have ANXIETY/PANICK ATTACKS" well now, 7 months later I find out I have sleep apnea, so obviously everything was not all anxiety/panic and if I really do have anxiety, maybe it's from the apnea?

Dang, that's some BS your doc wouldn't write you referrals. Luckily with my insurance I don't need referrals, but it does make things easier when they transfer all your files/info over and kind of fast track the process or whatever...glad you found a new one and hope you're getting the apnea under control.

I'll keep reading the boards. Thanks!

[brianthenewb]

You weren't dx'd by a clerk just informed of the dx by a clerk. I am not defending your doc but don't think this practice is uncommon in the sleep business. I also don't know of any DME who will "ask you" which make or model machine you want UNLESS you take charge, right from the beginning. I know I insisted on a certain make & model when I went to a new DME and they put me thru some hoops which I met because I would not settle for anything less. But I knew what I wanted - when I was knew I had no clue.

You may have to go back to your doc more than once to get the script right. Take notes on what is required on a "make & model" specific prescription and don't give up. Get a copy for yourself.

Yeah I guess you're right, I wasn't diagnosed by the supply clerk but just informed by her. Lol. She also said just bring my insurance card & come on down whenever, so I was going to go down today to pick up a machine and thought I had better call 1st and I'm glad I did because the gentleman I spoke with told me I had to schedule an appt with the sleep therapist to go over operation, try out masks, they had to get pre approval from ins, etc...

Thanks for taking the time to reply, I appreciate all the help & support!

[brianthenewb]

I am concerned that a "supply clerk" let you know the diagnosis. That also means that the sleep lab or doctor bypassed you by sending your prescriptions for CPAP equipment to a DME without asking you your preference. It's not that you would have a preference at this point, but you can't even be certain that DME is covered by your insurance until YOU check.

Read my blog post "What you need to know BEFORE you meet your DME". Get a copy of your prescription and make a WRITTEN request for a copy of your sleep study. Then YOU decide which DME you want to work with, based on insurance coverage and finding one who will provide the equipment YOU want.

Thanks for the reply Jan, I called the Cardiologist yesterday that ordered the sleep study to let them know I was a little upset about learning I have apnea from a supply clerk and I was very polite but the receptionist got snippy with me and even said "I know I just filed your darn report with the doc so he'll go over the results next week". I didn't appreciate her attitude but was still polite and said thank you, have a nice day.

Today I get a call from the cardiologist's office manager I think apologizing for the way they handled it and that the doc is sorry but he wanted to fast track the CPAP machine therapy so I may be able to use the machine for a few nights before I see him next Thursday. She told me that I have moderate or maybe mild OSA (I always get the Mild & Medium salsa mixed up, forget which is hotter, so why not get my OSA mixed up? She said he wanted me to use CPAP for 2-3 months I believe, then check back with him to see if I notice any improvement. She said they would help me if I have any problems with the supply company or insurance, but they assured me I shouldn't...lol.

They sent the prescription to that medical supply because it's Tuality community hospital and he's a tuality doctor, he also sent me to the tuality sleep center, so they keep it in the family and rarely send people to the bigger, better hospital 20min away...my insurance is supposed to cover basically anything & everything once I meet my deductible and tuality is in network, so I should be good but I will call them to make 100% sure.

I will take a look at your blog, thank you for all your help!

[brianthenewb]

Welcome to the forum You are in a good place here. Work any issues you have out here. Lots of smart and helpful people here.

Take 15 minutes and review this youtube video it will help you understand what is going on with you:
https://www.youtube.com/watch?v=-gie2dhqP2c

This video put the whole thing in perspective for me. I was able to show this video to my family to help them understand what is going on me.


I wish you well

Thanks Bill, I appreciate the link! I'll check that video out tonight. I will show it to my family as well. Everyone acts like I'm just fine and pretending or something and it's really irritating & stressing me out!

[Julie]

One very last tip that some newbies get confused about (no reason to think you would, but just in case), and that is that whether you're diagnosed in the 'severe' mild or moderate group, those designations have little to do with how high or low your prescribed settings are... in other words you may have 90 events on your sleep study, but how much cpap air is needed to keep your particular airway open is not about the number of events you have, but how much air (pressure) will do the job, and everyone's different of course. Just in case

[archangle]

Actually, a smart supply clerk probably could diagnose apnea given sleep study results. He might do a better job than a lot of doctors do.

Was it an in-lab sleep test? Did they put a mask on you at some point in the process? If so, the technician running the test is probably the one who really diagnosed you with apnea and determined your pressure settings, although the medical Mafia goes through the pretense that the Don, err, Doctor does the thinking. A doctor presumably reviewed the results and signed the paperwork, but I think that's often a rubber stamp.

[jannicatt]

Since you are in the Portland area, I would highly recommend Sleep Technology for a provider. they are great and really help you fit with a mask and provided excellent machines and service for us.

[brianthenewb]

Actually, a smart supply clerk probably could diagnose apnea given sleep study results. He might do a better job than a lot of doctors do.

Was it an in-lab sleep test? Did they put a mask on you at some point in the process? If so, the technician running the test is probably the one who really diagnosed you with apnea and determined your pressure settings, although the medical Mafia goes through the pretense that the Don, err, Doctor does the thinking. A doctor presumably reviewed the results and signed the paperwork, but I think that's often a rubber stamp.

Yeah, doctors seem like they don't care as much as they use to are all about the money these days and sadly, I guess they have to be to pay all that overhead. Nurses, PA's, equipment, lease, etc...If I go to look for a new PCP, I may look in some smaller surrounding towns and see if I can find one with less overhead & less patients...

Yes, it was done in the hospital lab. I went in at 9pm and probably fell asleep around midnight then she woke me up at 1:45am telling me I qualified for CPAP, so I guess I kinda knew I had apnea at that point. She put a nose mask on but it was really uncomfortable and I was gasping for breath, so she put the full mask on and I slept like a baby from 3am to 6am when she woke me. The only thing she told me is my oxygen levels were "scary" but she switched out the oximeter and that I went into deep sleep, "the dream state". She said she's just a technician with a certificate from ITT tech and isn't qualified to diagnose anyone with apnea that a doctor would follow up within two weeks, but it took 3 weeks and my PCP said they should have got back to me within 1 week, to call them and I was actually thinking about calling tomorrow afternoon if I didn't hear anything yet, but I did from the supply clerk.

[brianthenewb]

One very last tip that some newbies get confused about (no reason to think you would, but just in case), and that is that whether you're diagnosed in the 'severe' mild or moderate group, those designations have little to do with how high or low your prescribed settings are... in other words you may have 90 events on your sleep study, but how much cpap air is needed to keep your particular airway open is not about the number of events you have, but how much air (pressure) will do the job, and everyone's different of course. Just in case

Thanks for the additional info Julie, I really appreciate it! I haven't read up too much on it because when you see stuff like sleep apnea is a potentially life threatening condition, it kind of scares you into reading anymore, but I guess if that's the worst thing that can happen, I shouldn't worry about anything else I read on the subject...

[palerider]

Thanks for the additional info Julie, I really appreciate it! I haven't read up too much on it because when you see stuff like sleep apnea is a potentially life threatening condition, it kind of scares you into reading anymore, but I guess if that's the worst thing that can happen, I shouldn't worry about anything else I read on the subject...

you owe it to yourself to read as much as you can, and educate yourself.

yes, sleep apnea is a life threatening condition, it can cause heart attack, stroke, high blood pressure, congestive heart failure, slow death, quick death (falling asleep at the wheel) and a whole lot of other things.

the more you know about it, the better you'll be able to remedy the situation, and improve your life.

[archangle]

She said she's just a technician with a certificate from ITT tech and isn't qualified to diagnose anyone with apnea that a doctor would follow up within two weeks, but it took 3 weeks and my PCP said they should have got back to me within 1 week, to call them and I was actually thinking about calling tomorrow afternoon if I didn't hear anything yet, but I did from the supply clerk.

Yeah, she has to say that because she's not a "made man," but if she did the titration, she basically did the diagnosis and pressure determination. If they're good, a "higher level" tech and doctor will review, verify and make the official determination, but that's probably just rubber stamping the results.

[Greenkat]

Welcome!

I am reading thru your posts about your symptoms...particularly the heart symptoms, and wanted to share my experience.

I am also morbidly obese, but in my late 50's. About 10 years ago I began to have periods of a racing heart, but I thought they were anxiety as my father was ill & dying. I went in for all the heart tests...echo, stress test, etc. and was pronounced okay.

I continued to have periods of racing heart after that I put off to being related to stress, but it became worse in 2009 around the time my mom passed. I went in again for a series of tests and was cleared! So again I am thinking these symptoms are stress/anxiety-related.

Meanwhile, I am having all the symptoms of sleep apnea...waking up feeling unrested, waking up breathless, and getting foggier and foggier at work, but do nothing about it. I trick myself into believing it is from stress, getting older, and the demands of my job.

In 2012 I go in for pre-surgery testing and my EKG indicates an irregular heart rhythm. Long story short I am diagnosed with A-fib! I get referred to a cardiologist who does not even prescribe aspirin although BLOOD CLOTS are one of the major side affects of this condition unless you are put on blood thinners. My ankles begin to swell like tree trunks over the next year despite faithfully taking my blood pressure meds. I am feeling increasingly tired...actually calling off work b/c I did not sleep well the night before.

Despite my weight I had always been active and energetic up until about 2011. Now I can SEE my decline. I am only 57! I do NOT want to live like this. I go to another cardiologist for a 2nd opinion who is appalled my 1st cardiologist did not put me on a blood thinner or order a sleep study as heart problems and sleep apnea are linked. I go for my sleep study, and here I am!

The morale to my story? You do not want to do permanent damage to your heart...especially at 29, and you want to learn to be your own advocate for your health. I really think my 1st cardiologist did not do enough to get a handle on my condition or carefully review my results. Stay on these forums and gather as much info as possible and take your questions, comments or concerns to your doctor(s). Apnea is nothing to ignore or brush off! It is a serious & life threatening condition!

Thank God I never smoked, but I'd also focus on getting either the weight or smoking addressed. I am in the process of weight loss surgery b/c between the heart and the weight I am still more tired than I want to be despite a huge improvement from my apnea treatment.

So best of luck & sorry for the 'no nonsense' post, but at 29 you have your whole life ahead while a lot of us here are much older.

Keep us posted!

Kathy