Hello, I am new here..

Hello everyone My name is Jaylee and I am new to BiPap therapy.

My story is long, but here it goes

I have had trouble sleeping for years. I woke up often during the night and was told that I snored. I never gave it much thought, though. I had severe headaches that had me missing at least half a day of work a week, if not more. I also had high blood pressure and I was always so tired. I would fall asleep at the drop of a hat. Usually in the car after pulling in to the driveway, even though I was only about 20 feet from the house. I would sleep while waiting in line somewhere, while reading, watching TV, etc. I slept as many hours as possible, and on the weekends it was not unusual for me to sleep 18 hours a day. (well, not really "sleep" now that I know better )

In July I lost the sight in my right eye- temporarily. I was in the hospital and they had an alarm on my bed because they were worried that I would fall. This is when they discovered that I wasn't really sleeping. When I went back to the neurologist for a check up, he asked me some questions about my sleeping habits. I couldn't really answer a lot of his questions because I had recently left my husband (I prefer to call myself a survivor of domestic violence, not a victim, but this was a hard time for me in life having to leave him for my own safety) so I had no one who could tell if I was gasping for air or what not. I did know that as a teacher I would often fall asleep during the kid's rest time and my coteachers told me that I snored and woke frequently.

So he sent me for a sleep study. The results were scary. They said that on the scale a 25 was severe and that I was a 97. My oxygen was 49%. They called me at work with the results and I just went in to the bathroom and cried. It was just very scary for me. Someone cancelled their sleep study the same night and I was able to go in that night to try the CPAP. I ended up needing a BiPap and slept great that night. When I left at 6 AM the next day and went to work, I was actually awake the entire day. That never happened.

I got my BiPap set up in my house on the 7th of October. I had some insurance issues as I had to leave my husband and he lost his job, I lost my insurance, etc. My home medical providers were very helpful and helped me find a loophole to get insurance at my work- they had said no because I had to wait until open enrollment, but because my spouse was laid off I was able to get covered ASAP. I do not own my own machine, they said I had to use it a certain number of months or something before I can have it. Basically they said it would be $500 a month to rent. I am pretty scared right now that I am going to lose this machine because I do not have $500 a month, as I had to move in with my parents after escaping the DV situation and I am drowning in medical bills because going blind was expensive. But I have decided not to panic about the money until I know for sure what the new company is going to do. My boss did offer to buy it for me outright and to let me pay them back,so I do have that to fall back on if I have no other option.

Anyhow, my journey with the machine itself has been pretty simple. The mask does not bother me and I sleep without any issues. My machine varies on the pressure according to what I need. I have no idea how that work, but that was how it was explained to me. I am impressed by how much everyone here seems to know about their machine. I was told very little about my therapy. I have not had my follow up appointment yet with the neurologist. But I feel 100 times better now and I no longer sleep 18 hours a day.

Anyhow, I just wanted to introduce myself. It is nice to meet everyone

Welcome.
I'm also a newbie on the board only a few weeks.
You will learn a lot over the next few weeks and meet a lot of nice people that are much more knowledgable than me.

Best of luck!
Phil

Welcome, Jaylee! You certainly have quite a story to tell, and you have come to the right place!

This forum's sponsor, https://www.cpap.com sells the same machine you have now (M Series BIPAP Auto with Bi-Flex) for $999! That machine with a heated humidifier is only $1099. And if you want the BiPAP machine, heated humidifier, EncoreViewer Software and Card Reader it's $1339. If you're really paying $500 a month for a number of months, then you're getting ripped off big-time! You need to confirm if that's really the monthly amount you're responsible for, what equipment that covers, and how many months you'd be making payments. Cpap.com will match competitors' prices, so be sure to shop around on the internet if you decide to buy somewhere other than your current DME supplier.

I'm happy to hear that your therapy is going well. It sounds like you got help just in time. Untreated sleep apnea can lead to SO many other problems (high blood pressure, diabetes, stroke, heart attack, memory problems, obesity....). We're glad you're here! This is a great place to get information and support.

~ DreamOn

Welcome, Jaylee! You've definitely landed at the right place. The folks on this board are so knowledgeable and very supportive, of all of our life's situations, not just the OSA bit.

Congratulations on being a survivor! I'm sure that's one of the hardest things in the world to come through; the osa stuff should be a piece of cake for you!

Feel free to jump on in to ask anything you want. And, the wiki at the top of the page provides some great educational reading material.

Welcome! We're glad you're here.

ScrappinMom

Good to have you aboard, Jaylee. While it truly sounds like you have a fine case of OSA, with all the classic symptoms, it also sounds like you take to treatment easily. That's great -- many people have trouble at first with the mask and all.

I think you should find out, exactly, who says you have to rent for a period of months at $500 a month. If it is the insurer that says you have to do so, and it is paying, well then okay. Some have a policy only paying for a rental until you prove you will use the equipment regularly. But if it is the DME (the company that sells the equipment) saying this, be skeptical.

My DME told me I had to rent for three months. I asked if I was renting to buy, and the DME said no, the rental payments would not count toward purchase. I asked if I could swap for another kind of machine after a month if the first one was not satisfactory, and the DME said no, a used machine couldn't be returned. I'm not sure that the tech who told me I couldn't return the rental machine was giving me good information, but given what I was told, there really didn't seem to be a good reason to rent. So I insisted on an outright purchase, which my insurer approved, and saved a little co-pay money by going home an owner on day one.

I mention this story only because the $500 rental seems unreasonable. As DreamOn says, that's about half the internet price of the machine itself. There is no law that says you have to rent. If the doctor has some doubts that this is the right machine and you have a right to return it, maybe there is some value in a temporary rental, and maybe it is the insurer that requires it. Otherwise, it seems like a waste. The DME doesn't own you as a customer. You have a perfect right to shop around and buy anywhere you like.

Thank you all for the warm welcome and for the information

Therapy itself has been easy for me. I have always been one who can sleep any time, anywhere. The mask does not bother me at all, I don't even realize that I have it on. The machine itself does not make any noise. It did take a couple of nights to adjust to the pressure but after that I did not notice it. I have read many threads on here so I realize that I am so lucky in this respect. I did not adjust to the first mask they tried on me for the second sleep study, but the second one just fit me like a charm and has worked perfectly for me. They did analyze my data card recently and said that the machine is working great for me. I actually wake up on my own now, that is crazy to me. I have never done that, not ever! I also read in some threads here that people put their mask on then read a bit before sleeping, I did not realize you could do that but I will do that now because I like to read lying down, and always have to sit up then put the mask on when I am done. It will be much easier to just have the mask on and just be able to put down my book and sleep.

Hi Jaylee,
I am new here too. Tonight will be my 7th night on CPAP. Isn't this site amazing? I found it 5 days ago and have been accessing it every night to get info about my machine and about different masks. I am already trying out another mask based on what I have learned. I am amazed with the amount of information available here.
Welcome aboard to both of us. I truly hope everything works out with the purchase of your machine!

Ms.Snuffleupagus wrote:I am new here too. Tonight will be my 7th night on CPAP.

I extend a warm welcome to you also, Ms. Snuffleupagus! I've been using CPAP for only just over a month, but I have learned SO much from these good people here!

Keep exploring the forum, and be sure to ask any questions. There are lots of people here willing to help you through any rough spots that may come up. I hope your therapy is going well and you're feeling the positive results.

~ DreamOn

Thank you DreamOn!
I have not yet had much sleep with the APAP as I find it very hard to fall asleep.

I am lucky though, in that I do not have any health problems except for the sleep apnea (and being overweight and out of shape), so hopefully I caught it in time. Although judging by the way I have felt over the past many years, I must have had it for a very long time. Couldn't figure out why I was so unmotivated to do anything, collapsing on the couch after work. Taking most of Saturday to recover from the work week. Thought I was just getting very lazy in my old age.

Anyway, I tried the liberty hybrid mask last night for the first time, as I didn't like the nose mask I as initially given (Zest). It was such an effort to keep my mouth closed (friends would say they weren't surprise..), found myself puffing out my mouth and felt I was unable to breathe fully out. It was such an effort to keep my mouth closed even with a chin strap and took me hours to fall asleep.

So, I had them set the EPR to 2 and decided to go straight to a full face mask, after checking out comments on this forum. But my stats were a little high this am..AHI at 9 or so and still woke up quite tired. AI was 2 though and leakage was low. We'll see. I have also seen that people here say that it takes a little bit to get used to a new mask. I have the quattro as well, but have not yet tried it out for a full night. I have 3 months to try out different masks.

A week ago I knew nothing about AHI, AI, HI etc. Many thanks to the good people here. Looking forward to getting a full night's sleep soon I hope.

Snuffy

Ms.Snuffleupagus wrote:A week ago I knew nothing about AHI, AI, HI etc. Many thanks to the good people here. Looking forward to getting a full night's sleep soon I hope.

Yes, we all have to learn this stuff from scratch. This forum is where I learned most of what I know now about sleep apnea -- especially how to solve any problems. I've had a very easy time adjusting compared to some, but I've had a few bumps in the road.

It sounds like you're making great progress and working things out. I was a very restless sleeper before starting treatment, and my sleep cycle was all messed up. Now I know that was due to the apnea waking me constantly. Things seem to be correcting now. I've probably had sleep apnea for at least 15 years, so I don't expect instant results on all fronts, but I am now sleeping peacefully through the night and feel terrific during the day.

I hope you find you'll be getting all the sleep you need very soon! It sounds like you're feeling better during the day.

~ DreamOn

Welcome aboard Jaylee,
It sounds like you have had a long journey down a very bumpy road. You always hear people say that their is light at the end of the tunnel. You have made some major changes in your life recently and that light at the end of the tunnel will keep getting brighter and brighter. As far as the sleep apnea goes, you got a taste of a good nights sleep. The amount they are paying for the rental on that unit is a crime. Most insurance companies do what is called a rent to own. They rent it for a year and then it's yours to keep. However they usually pay at least two times the cost in rental fees is not three times the cost. You don't say where you live but you may be able to find a DME (durable medical equipment) supplier nearby that would be willing to take that amount of money on a rental from the insurance and you would own it in a couple to a few months. You may also find a DME that has a used unit or a rental that they are interested in getting rid of now that thier is a newer unit out.
Do you know what the pressures are that you were titrated to?

You do have the unit and are using it and they are working out the billing and insurance later correct?

Take a deep breath that light keeps getting brighter with every step!

Best of luck

Gerry

I am hoping that my apnea was the main reason for my blood pressure. It has been lower since I have started therapy.

I do have the machine, and am using it nightly. I love it and would not give it up for a million dollars LOL I do not know my pressures, they did tell me, but I have forgotten since then. I will figure something out. I am waiting to see what my new insurance will do. In the end, I might take my company's offer and have them pay for it- it is only around $1300 to buy it outright- and just pay them back.

Jaylee wrote:I am hoping that my apnea was the main reason for my blood pressure. It has been lower since I have started therapy.

Me too! I had to go back on blood pressure medication a few months before starting CPAP. It was extremely high (ready-for-a-stroke-at-any-minute high!). Right before I started CPAP my blood pressure, on medication, was still a bit above normal. Since starting CPAP just over a month ago it has come down a bit. I'm tracking everything (sleep data like AHI, AI, HI; blood pressure; hours and quality of sleep; how I feel; etc.) to see if there are any clear patterns. I'm also investigating some suspected thryoid issues. My ultimate goal is to get off blood pressure medication completely, if that's possible at this point. I plan to lose some weight so that may help. I lost 110 pounds a few years ago and was able to stop the medication. But then I gained about half of that weight back.

Searching for the reason for my high blood pressure is how I came to be tested for sleep apnea. I wasn't willing to accept my doctor's explanation that "sometimes there is no explanation"!

I hope everything goes well with your machine/DME issue. I don't know how your DME works, but I got all my billing information in writing when I received the machine, so I knew upfront what I would owe. Learn about your BiPAP pressures and how to use your machine fully to make the most of your therapy. There is a lot of information on this forum, so take your time exploring. You have a very severe case of sleep apnea. Your oxygen saturation dipped especially low at 49%. It sounds like you're definitely on the right track now, and I think you're going to continue to see big improvement in your overall health. Apnea and sleep deprivation affect us in SO many ways!

I wouldn't give up my machine either, by the way! I feel SO much better!

~ DreamOn