New to Site But Not To Diagnosis...DESPERATE!!!

[RedHeadsRule]

Hi everyone. I am new to this site, but was diagnosed with "Severe Complex Sleep Apnea" 5 years ago. It was so severe, and the doctor really hammered it into me that it was crucial that I never sleep with out my ASV machine because it could be life-threatening. Since then I have never missed using my machine at all. Until a week and a half ago....

About 10 days ago I went to take a nap (I also have Idiopathic Hypersomnia) and when I turned my machine on it had a loud humming sound and there was an electrical smell coming through the mask. Later on the alarm went off and the machine flashed an error message that indicated it was obviously non-functional. Ok. So now I have a machine I can't use and immediately contact the company that provided the machine and who we lease my oxygen machine from. They have always been a horrible company to deal with-worst customer service I have EVER seen, but they are the ONLY local company we have. Well, I was lucky to reach anybody at all, and the person I DID reach told me that before I could get authorized for a new one I needed to have a face-to-face appointment with my doctor and she had to note in my chart that the machine was "Broken beyond repair". She also told me that since they don't keep ASV machines in stock since they are so expensive, it would take weeks, and possible over a month to receive a new one! So, I went online to see if I could find another company that could supply me with an ASV machine in a more timely fashion. Luckily, I found a company called Americare Respiratory Services in California (I live in Connecticut). The rep told me that as soon as we got pre-approval from the insurance company then he could get the machine to me in 2 days. That was wonderful, except that all of this happened on the Friday before Memorial Day and my doctor's office was already closed. I couldn't get in to have the face-to-face appointment until after Tuesday when the office would be open again. I was afraid of going that many days without any machine-or even my oxygen, since I don't own a cannula and have only ever gotten my oxygen through my machine. (My oxygen level dips down into the low 70s at night when I sleep without it-and that's WITH the machine).

Ok, I'll spare you every even that happened this past week, but suffice it to say that the very kind Rep at Americare and I were jumping through hoops to get every piece of information the insurance company needed. My doctor happened to be out of the office until this past Thursday, so I couldn't get in to see her until Friday. You can imagine how I felt physically after a week without a machine or oxygen....it was horrible. My doctor's office faxed everything over to the rep at Americare and I thought all that was needed then was our credit card number and my machine would be shipped. But then the Rep told me that we have to wait for pre-authorization from the insurance company...which could potentially take another week! All I could do was cry hysterically. I feel like nobody cares that every time I go to sleep I may not wake up. Nobody seems to keep these ASV machines in stock because they are too expensive. I tried calling up the pre-authorization number on the back of my medical card to see if there was any way of expediting the pre-authorization process given the circumstances, but I got someone who obviously didn't know anything. She told me that all that had to be done was have my doctor call them and order the machine. (this had never been mentioned before, and once again it was a Friday evening and my doctor was out of the office). She also told me that she had no record of me ever having a machine and there was nothing submitted for pre-authorization. Well, since I have had a machine since 2013, and it had already been replaced once, I know she must just be clueless. The ONLY thing I could think to do was to order a Cannula from Amazon so I at least have my Oxygen. That came in today.

Does ANYBODY out there have any ideas or words of wisdom regarding what I could possibly do now? I am really afraid to go another week or more without a machine, and I can't believe that any of these people are letting me! When I had my sleep study done, the technician at the Sleep Center said it was the worst case he had ever seen. I know it is extremely severe and isn't just obstructive sleep apnea, but also central and I also take too shallow of breaths when I do breathe-I don't remember what that's called. I have my Sleep study here in case anybody wants to know any information on that. I don't always understand some of the abbreviations used on here, so any questions would need to be specific. I apologize for this being so long, but I was trying to be as thorough as possible.

Thanks.

[Pugsy]

What about a used machine private purchase that could be used until you get your new one through insurance and then it can be delegated to back up status so you won't ever have to be without a machine again if it craps out?

I might know of a used S9 Adapt which is ResMed's ASV machine model name.

There is also secondwindcpap.com but their ASV machines are going to cost a lot more than this one that I might know of.
I sent the person with that machine a note and pointed him to your thread.

[cpap626]

I have a resmed s9 Adapt if you would like to purchase it please send me a pm.

[Pugsy]

Okay folks. I heard from OP and there's no funds available for a private purchase at this time.
Available credit card dollars needs to be available for when the new machine comes in and the co pay must be made.
Just not any extra cash right now.

[Soothest Sleep]

If it was me, I'd ask the hospital Emergency Room if it was possible to get a loaner unit, or at least obtain some advice from their perspective. But, I am not in the USA and so don't know all the ins and outs of whatever medical charges or insurance situations that would all entail. Just a thought.

Jean

[CarpeNoctum]

RHR,
Sleep in a chair until you get a new machine. A recliner is perfect ...just don't recline it all the way down. I traveled two nights on a train sleeping upright and actually slept ok.

If your apnea is mostly obstructive...you may get by with a lesser machine temporarily. Check and see what your local Goodwill has on the shelves.

If you're on the west coast I could get a low hours Legacy Respironics asv to you in a couple days.
CN

[RedHeadsRule]

Thanks for the advise, guys. I really appreciate it.

Soothest Sleep: I didn't go to the ER because I am not sure if that would be considered a visit, and we have a $150 copay (which we can't afford). Also, I know from previous stays at my local hospital that they don't have much in the way of equipment. It's a small hospital and from what I remember the mask was made partially from styrofoam, or something like that. I remember the machine being large and clunky, not something that could be loaned out. Maybe I'm not remembering it all correctly, it has been a few years, but I could tell from things said by the respiratory person that came to my room that they have rarely dealt with anyone with anything more than obstructive sleep apnea. Add to all of that the fact that I am almost exclusively bed-ridden (I CAN walk very short distances, but it's very difficult, and I have to stop and rest several times just to get out of my house) it would be a very difficult endeavor that I doubt would yield any real results.

CarpeNoctum: I already sleep on a wedge, so I am elevated to a degree. It is true that a recliner would elevate me even more, but I am a side sleeper and I can't imagine I could get much sleep like that. Either way, I have both obstructive and central sleep apnea, as well as...I forgot what it's called, but when the breaths you DO take are way too shallow to get the oxygen you need. The recliner idea would definitely help the obstructive sleep apnea, I am most concerned with my central sleep apnea. I am not sure if I have one more than the other, but I think they are mostly equal, depending on the night. I was just looking at my sleep study and my baseline AHI was 86.91. It looks like that number was divided up between obstructive, mixed and central.

At this point, we are just waiting for the insurance company to issue the "Pre-Authorization" so the company can send it out. After the Pre-Authorization is received it will still take two days for me to get it. I am so exhausted I can't imagine continuing on like this for another week or more!

Does anyone have any ideas on how I could maybe get the insurance company to expedite the Pre-Authorization process? Right now the rep who is selling me the machine is contacting them to let them know this is urgent, and he has asked the nurse at my doctor's office to also call and remind them of the same. He has encouraged me to call as well. Are there any additional ideas, or even suggestions on what I should say to the insurance company, if I could get through the conversation without breaking down and crying! Or should I start a new thread to ask those questions? I am not at all familiar with forums or how they work.

[CarpeNoctum]

RHR,
With a thread with multiple subjects, some of the subjects are often overlooked. So separate threads can help...but starting multiple threads on same subject is generally frowned upon.

You wrote:
"when the breaths you DO take are way too shallow to get the oxygen you need"

This comment makes me wonder if an AVAPS machine might be better then an ASV. That machine ensures you get a proper volume of air. All quite complex and something best discussed with your sleep Doc.
CN

[RedHeadsRule]

CarpeNoctum: Thank you so much for the information regarding multiple subjects. I will do my very best to comply with that in the future. My thoughts can be scattered, so I sometimes have difficulty remaining on point and this will be a good exercise in self control for me. LOL!

For any of you other angels who have been interested in helping me and been so kind, I want to again thank you, but am very happy to report that my insurance company just sent pre-authorization for my new machine! Americare has ordered it to be overnighted to them, so they should have it tomorrow, and with any luck, be able to overnight it to me so I can have it on WEDNESDAY! YAY!!! I am so excited!

Thank you all for all of the advice and kindness, and just being willing to let a desperate person vent! You are all amazing!

[nicholasjh1]

Hi everyone. I am new to this site, but was diagnosed with "Severe Complex Sleep Apnea" 5 years ago. It was so severe, and the doctor really hammered it into me that it was crucial that I never sleep with out my ASV machine because it could be life-threatening. Since then I have never missed using my machine at all. Until a week and a half ago....

About 10 days ago I went to take a nap (I also have Idiopathic Hypersomnia) and when I turned my machine on it had a loud humming sound and there was an electrical smell coming through the mask. Later on the alarm went off and the machine flashed an error message that indicated it was obviously non-functional. Ok. So now I have a machine I can't use and immediately contact the company that provided the machine and who we lease my oxygen machine from. They have always been a horrible company to deal with-worst customer service I have EVER seen, but they are the ONLY local company we have. Well, I was lucky to reach anybody at all, and the person I DID reach told me that before I could get authorized for a new one I needed to have a face-to-face appointment with my doctor and she had to note in my chart that the machine was "Broken beyond repair". She also told me that since they don't keep ASV machines in stock since they are so expensive, it would take weeks, and possible over a month to receive a new one! So, I went online to see if I could find another company that could supply me with an ASV machine in a more timely fashion. Luckily, I found a company called Americare Respiratory Services in California (I live in Connecticut). The rep told me that as soon as we got pre-approval from the insurance company then he could get the machine to me in 2 days. That was wonderful, except that all of this happened on the Friday before Memorial Day and my doctor's office was already closed. I couldn't get in to have the face-to-face appointment until after Tuesday when the office would be open again. I was afraid of going that many days without any machine-or even my oxygen, since I don't own a cannula and have only ever gotten my oxygen through my machine. (My oxygen level dips down into the low 70s at night when I sleep without it-and that's WITH the machine).

Ok, I'll spare you every even that happened this past week, but suffice it to say that the very kind Rep at Americare and I were jumping through hoops to get every piece of information the insurance company needed. My doctor happened to be out of the office until this past Thursday, so I couldn't get in to see her until Friday. You can imagine how I felt physically after a week without a machine or oxygen....it was horrible. My doctor's office faxed everything over to the rep at Americare and I thought all that was needed then was our credit card number and my machine would be shipped. But then the Rep told me that we have to wait for pre-authorization from the insurance company...which could potentially take another week! All I could do was cry hysterically. I feel like nobody cares that every time I go to sleep I may not wake up. Nobody seems to keep these ASV machines in stock because they are too expensive. I tried calling up the pre-authorization number on the back of my medical card to see if there was any way of expediting the pre-authorization process given the circumstances, but I got someone who obviously didn't know anything. She told me that all that had to be done was have my doctor call them and order the machine. (this had never been mentioned before, and once again it was a Friday evening and my doctor was out of the office). She also told me that she had no record of me ever having a machine and there was nothing submitted for pre-authorization. Well, since I have had a machine since 2013, and it had already been replaced once, I know she must just be clueless. The ONLY thing I could think to do was to order a Cannula from Amazon so I at least have my Oxygen. That came in today.

Does ANYBODY out there have any ideas or words of wisdom regarding what I could possibly do now? I am really afraid to go another week or more without a machine, and I can't believe that any of these people are letting me! When I had my sleep study done, the technician at the Sleep Center said it was the worst case he had ever seen. I know it is extremely severe and isn't just obstructive sleep apnea, but also central and I also take too shallow of breaths when I do breathe-I don't remember what that's called. I have my Sleep study here in case anybody wants to know any information on that. I don't always understand some of the abbreviations used on here, so any questions would need to be specific. I apologize for this being so long, but I was trying to be as thorough as possible.

Thanks.

I had some pre-auth issues and ended up calling into my insurance company, I ranted and raved at them asking to be sent up the ladder and threatening a class action lawsuit for keeping a life saving machine away from me when all they were waiting for was my "interview" questions stating that I got tired during the day and my "sleepiness" rating, when they had already been given sleep studies indicating I had severe sleep apnea. Anyway... the next day a "specialist" called me and I got it approved. This was with United health care. So my advice. get ready to rant.

[RedHeadsRule]

nicholasjh1: Thank you so much! I have United Health Care, too! But I am happy to report that I got pre-authorized today, the manufacturer is overnighting it to Americare, so they will have it tomorrow and they will overnight it to me, so I SHOULD have it by Wednesday!!! I'm so excited!

Yes, the man from Americare put in many phone calls to my insurance company, as did my husband and the nurse at my doctor's office who deals with these things. We were all bombarding them with phone calls! Thankfully it worked! Now, I know exactly what to do if anything like this ever happens again.

Thanks so much for the advice and support!

[CarpeNoctum]

Congratulations...persistence pays off. Red Heads Rule!
CN

[Stiina]

I'm so glad you were able to get a machine! I just wanted to let you know that the only time I'm able to sleep decent is if I'm in a chair or recliner that I can let my head fall back in such a manner that my air way stays open. It's terrible for my legs and hands when I'm in an office type chair, but at least I do sleep. I suffer from sleep apnea and Hypopnea. I'm not sure why the Hypopnea doesn't become problematic when I do this, but I'm still alive. I also wanted to point out that if you are tired enough, you will learn to sleep on your back--I did.

Now that you have your machine, I hope it works well for you. I've had my machine for around 4 years and I've never been able to get it fixed--it doesn't detect when I begin breathing after a hypopnea episode and it blows so much air, that it blows out a mask that is on so tight I have marks in the morning and it blows my mouth open so air is coming out so hard I can't breathe out! They don't believe me. I'm in the process of trying to get a video of this happening, but I don't seem to think of it when I can't get a breath out! LOL.

Happy Sleeping!

[RedHeadsRule]

Thanks for the information, Stiina.