Newbie’s Sorry Sleepless Saga...

[drmgrl]

New to the forum and first- time blogger here…half asleep, and it may get sort of long, but here goes…fall of 2007, after many years of various annoying health issues, I was dx with OSA and rx the resmed compact s8 with humidaire 3i. The mask is the Nasal Aire II cannula-style with standard headgear (x2105). I also was rx ferrous sulfate along with requip for restless legs. My “RT” (and I use the term loosely) came to my home to deliver the stuff, spent about 10 minutes with me (NO real in-depth, helpful information of any kind), and that was the last I heard from her. So in my crazy, sleepless state I grabbed my handbook and tried to figure out what the heck I was doing. I couldn’t keep the ferrous sulfate down (awful on the stomach!), the requip made me nauseous, too. I seriously tried to figure out how to work the cpap. During the first night I could not get the hang of the contraption, kept freaking out from the discomfort of it all. Halfway through the night I tore the stupid thing off so that I could get some (less) crappy sleep (some,better than none)! In the morning I had horrible open sores on one nostril. Lovely. So night two, I try again. Gingerly insert the tube up my painful nostrils, (OW!) ramp up and maybe I’m going to actually be able to sleep. Yeah, until the middle of the night (after tossing and turning because of the tubes on the sides of my head) all of a sudden I wake up ‘cause I’m sucking water up my nose! What the heck? Tore the headgear off and went to sleep. Next day, I wake up with my nose completely stuffed up (and I’m still throwing up every time I try to take my meds!). Try yet again to sleep with the machine (not easy with a plugged nose and nasal pillows). Finally drift off, and then wake up shortly thereafter having to go to the bathroom (no easy task). Hadn’t planned on that. This, apparently, was my breaking point. How I wish I had discovered these blogs at that time! At that point, I gave up completely, never even went back to my Dr. (who’s fast, broken English I couldn’t understand and didn’t seem to have time for me anyway). Nor did I once receive a follow-up call from my DME (or my Dr’s office) to see how things were working out. I just went back to “business as usual” because at least I could get SOME sleep even if it was bad, and my stomach wasn’t torn up. My machine was packed away on a closet shelf, and, honestly I just tried to put the whole awful ordeal behind me. But what was I thinking? Oh, the pain of a sleep-deprived brain! Without realizing it (yeah, I know…I was in a pretty thick brain fog at the time…), I was being charged a monthly rental fee to store their piece of garbage. My insurance co. paid them $700. Fast forward to fall, 2008. I get a call from my insurance co. that “Wedon’t”care (my DME) hasn’t sent them proper info. for billing purposes. So I’m making calls back and forth like a crazy person for a machine I don’t even use (which I made abundantly clear – big mistake). And for the FIRST time, my DME calls me to see how it’s going with my CPAP machine! I told the guy I only used it 3 nights and it’s been stored safely on my closet shelf and please come pick up their garbage (which they STILL haven’t).I even toyed briefly with the idea of putting it in my driveway and driving back and forth over it like a maniacal lunatic! Not only do they still not pick it up, they continue sending me monthly bills saying I owe them another 900 dollars (because insurance co. won’t pay anymore because I’m “noncompliant”! And my insurance co. tells me I own it now. What the heck? Sometimes I can’t even get through to “WeDon’t”Care’s billing dept. – you call the # on the statement and you get the recorded answering machine that puts you on hold for 2 minutes, then disconnects you! Repeatedly. This really helps with the sleep problems. Luckily, I saved the number from the ONE follow-up call I had received and that has been my means of contacting someone for some pseudo”help”. Now I’m seeing a new Dr., I’m on thyroid medicine (I’ve since learned that OSA is a symptom of Hypothyroidism!) and he says I’m still going to need to try and use the CPAP (hopefully, he’ll be able to help me with some of this, although I’m not holding my breath). So I’m waiting for more test results, taking my thyroid med., and I’m beginning to come out of the fog (barely), and I smell a big, giant, corporate rat! “Let’s take advantage of half-crazed, sick, sleep-deprived people and soak their insurance companies while we’re at it!” What a racket! In this horrible economy while people are losing their jobs all over the country, these companies are making record profits – no wonder! I got a hold of the guy who called me a year ago and asked him a lot of questions. Turns out he would have been my RT but was out on leave at the time. Basically told me the person who was assigned to me dropped the ball, that rental policy is supposed to be stressed at the initial setup meeting, that phone numbers for assistance are given at that time, and that follow-up calls in the first couple months are normal (the first one usually after about three days!)He said I was definitely not the only person this happened to. I think this guy actually feels bad about it -he offered to send me a new mask (for free – told me the one I own is “a piece of crap” – his words). I’m grateful, even though it’s a resmed mirage swift nasal, the kind with the tube that goes up between your eyes. So I laugh. Great…new, sexy headgear, and now I’m gonna be like Steve Martin in “The Jerk”. I’ll get a good night’s sleep, but I’ll become cross-eyed!!). But at least it may provide some help. I’m so furious with this company! And honestly, I don’t “get “ drs. who tell you you have a life-threatening illness but don’t care enough to make one follow-up call when patients are new to all this. They have to know how hard it is for first-time patients. They see the non-compliance rates. But why should they care? They’re the ones who’ve been getting the kick-back money from “WeDon’t”Care. I want this torment with this company to be over. I’ll be talking with someone at “WD”’C’s corporate office tomorrow (if the phone # the billing dept. gave me actually has a person at the other end). I suppose I could pay them : one dollar a month ‘til the bill is paid. The worst part is, I’m worse off now because of all this (financially and healthwise) than I was back in ’07! Wow – thanks for letting me vent. I’m hoping someday I can look back on all this and laugh. In the meantime, I’ll be doing my homework on this site and learning what I can. Here’s hoping the newbies will read this and not make the same expensive mistakes I’ve made . But for now – Sheesh! Any suggestions from you pros out there? I’d sure appreciate it…

[kteague]

Hello and welcome. Just got a couple comments.

First, it might be helpful to find out what your DME's responsibility is to your insurance company for confirming compliance for the equipment rental being billed. We know they didn't do their job in following up with you, but facts are key. You could get that information from your insurance company. Also, any contract given to you with the machine will outline your responsibility (if any) regarding reporting. Depends on the details if you'll be stuck and for how much.

I was a cpap dropout early on (not quite as early as you though) and was in a simlar situation with a doctor and machine of which neither were helpful. It's unfortunate, but this is the here and now. I found my way here in 2006 and I'm now doing very well with my cpap treatment. Hopefully you'll get on track and begin to reap the benefits.

The problems with your legs is another story. Just be sure any continued sleep problems don't get blamed on cpap if your legs are disrupting your sleep. I understand your issues with taking the meds - been there, done that. But cross that bridge once you get your cpap treatment stabilized. Best wishes.

Kathy

[rested gal]

drmgrl, welcome to the message board. Unfortunately, what happened to you -- lack of followup and support right from the beginning -- probably happens to wayyyy too many people.

I'm glad to hear that the second RT you got is sympathetic to what you were put through, has given you a mask that suits most people pretty well, and is trying to help you.

I hope you can get help in straightening out the "non-compliance" financial issues. Without having everything explained to you clearly at the beginning -- and proper followup to help you with mask issues so that you would be able to use the machine -- the DME sent you up the creek without a paddle. I guess recourse, if any, will depend on what you signed when they gave you the machine.

Most people, especially in a sleep deprived state, trust the doctor and the home health supplies people to steer them right and prescribe/provide what is needed. The doctors probably figure their job is done when the prescription is written. From that point on, you're pretty much left in the "care" of the DME -- and too many of them figure their job is done when they toss you a mask and a machine. "Next?"

Keep digging into this message board as if you were a medical student studying for the exam of your life. Because that's what "cpap treatment" will be to you -- the exam of your life that you want to pass with flying colors! At the bottom of my post here, there is a link called "All Links by rested gal." One of the links on that page is to Mile High Sleepers excellent blog:

http://www.smart-sleep-apnea.blogspot.com

That will be a very good place to start learning all you can about sleep apnea and "cpap" treatment.

When the time comes to start working on the leg movement problems, kteague will be the best resource helper for you on that.

Do keep asking questions here, describe problems you're having, or just vent when it all seems like too much to you. You'll get plenty of support and help here. You're gonna be fine.

[drmgrl]

Thank you so much, kteague, and Rested Gal for your helpful responses! It felt so good to vent (could you tell?) But I definitely will be looking into the great information you've shared (although I admit, I'm a little tired already just thinking about all that I have to learn!). But grateful for this forum and all the help provided here. I just received my new Swift LT mask in the mail today, so I'll be trying it out tonight. Wish me luck!!!

[dixieblue12]

Welcome you have found an awesome forum to learn from... Hang in there it will get better

[drmgrl]

Thanks for the encouragement, Dixieblue12. I'm looking forward to learning all I can!

[JoyD.]

drmgrl,

Wow, I'm so glad that you found this forum!! WELCOME and CONGRATULATIONS for that! You are ahead of many who continue to struggle with no hope in sight who have lived through a similar story as yours! But YOU have turned a new page . . . and it is all uphill from here.

I was diagnosed only a couple months ago, and my doctor and DME were a step or two above yours . . . but I still didn't have a clue! After a couple months here with the kindness & sincere helpfulness of this wonderful Cpaptalk Community, I am able to find solutions to my many sleep & CPAP challenges! There is an answer for most every treatment problem because it's a "group effort" that includes a lot of OSA veterans who have a wealth of information and are graciously willing to help the rest of us! And the "rest of us" . . . we are figuring this stuff out together and not alone!

Hope you can get around the $$ issues . . . but even in the worse case scenario at least you are going to FEEL better and avoid the consequences of not being treated. So, good to have you on board, gal!

Joy

[DoriC]

Welcome. Hope you've taken a deep breath by now and know that you're lucky to have found this support forum. I know you feel overwhelmed, but after you read all the New User and Our Wisdom stuff, just start asking one question at a time or as many as you'd like and the pros will all make it come together for you sooner than you know. Good luck. Dori

[Kate53]

I feel for you. It is so frustrating! DO NOT GIVE UP. I also have restless leg syndrome and during the sleep study I found that I move my legs about 35 times per hour. BEFORE the sleep study, and BEFORE I knew I had apnea, my MD gave me Mirapex for the RLS. I took it occasionally, but always felt very, very tired the next day. I also noticed that I was getting up at night to go to the bathroom four or five times a night. During my last search regarding RLS on the net, it came to my attention that Mirapex (and those like it) actually make apnea worse. In speaking with my regular MD and my sleep MD, they both said that once the apneas are under control, the RLS subsides as well. I just started my Cpap therapy - I am on day 2 and feel good today - but I also take Ambien CR before bed. I know a lot of people are "afraid" to take the Ambien, but for me it has helped tremendously. I also have the regular Ambien (short acting) which I take on occasion if I am not going to be able to get at least 8 hours sleep or if I have to travel early the next day. I will start weaning myself off after I adjust to the Cpap. One day, one thing, at a time. You must have a good physician - switch if you can. My "fitting" with the DME was one hour and forty-five minutes long. Part of that was due to my questions. I found this site before my second sleep study so I was "armed" and ready for that DME. He was amazed at how much I knew. He also said too many people give up due to the mask not fitting well but not calling him. They just bring the Cpap back, throw it on the counter and say "I'm done with this". By the way, I have the same nasal pillows that you have ordered. Make sure it fits well and does not hurt your nose. The instructions (as usual) are not that good. I have had to fiddle around with it, but I do like it so far because it is less confining. I took a picture of mine before I took it apart to make sure I put it back together right. I still got the pillows backwards last night. Like I said, I am on day two---still learning. Please, don't give up. Once you find what works, you will feel soooo much better. Be patient with yourself. This is a learning process.

[Debjax]

Hey there and welcome.

Now that you've found us, I think things will be alot better....support is a wonderful thing. The Swift LT is a great mask....even with the tube that goes up between my eyes. Most of the time when I wear it, it doesn't feel like I am wearing anything....and hey, my sinuses have never been better.

Give it a whirl, vent on us and you'll get through it and in the end...love it.