New Diagnosed, new machine, now what?

[Kahfree]

Hello everyone and I am glad to find this site.

I am a newly diagnosed Sleep Apnea Patient, or as I would like to say, victim of involuntary suffocation during sleep. For a while now I had been waking up gasping for air. I had no idea what was wrong with me, and Sleep Apnea was not on my list of reasons. You will find it amusing that Ghosts trying to suffocate me during sleep was an option! The reason is I thought Sleep Apnea was a lifelong problem, not a "new" thing that can happen to a person. I also thought it might have been allergies to my cat, or asthma, or the room was too hot, or my nose was stuffy, etc. So, last January, 2010 I asked my doctor to help me figure out why I have trouble sleeping. He ran an allergy panel and other than my allergy to Penicillin, I was good. Believe me, my cat was happy because he thought he was going to get the boot from my room if I was allergic to him!

So, during the year I had "other" medical issues going on and put the gasping on the back burner. However, I am always tired during the day, take one hour naps every day (I work from home) and wake with migraines so bad I can barley lift my head. So, finally I make the appointment with the Lung doctor and have a Lung Function Test to see where my diagnosed asthma of 27 years ago is at now. To my discovery, and the doctors, I show no signs of asthma, COPD, disease, etc and my lungs are perfect. So, just before the doctor decides to send me on my way with a rescue inhaler in case I wake up unable to sleep, I make a statement.

"Doctor ________, I am not looking for something to be wrong with me, and I am thankful that my lungs are normal and healthy, but please, tell me why I cant breath at night and I wake up Gasping?" He looked at me like that's the first time he heard me say it, when in reality I said it during the initial visit, but I suspect he was concentrating on asthma at the time. Hmmmmm...he said. "Do you find that you have restless legs?" I said, "Well, if you mean do I wake EVERY night and jump from bed with leg, foot, and calf cramps, then yes." Again he asks, "What about headaches?" "Oh yes, I have terrible ones and I think I live on Ibuprofen." "Heartburn?" "Oh yes...so bad I burn all night long!" A few more questions and suddenly I am walking out the door with an oximeter in hand and an order for me to start taking prilosec. I bring it back the next day and a few days later, they call to say that I may have sleep apnea and need to see a specialist. So, I get the appointment and do the entire Question thing and set the appt for the sleep study.

December 21, 2010 I have the study. I found it hard to sleep and did not sleep the entire night! YIPPY. I am disappointed in the sleep study and myself because its my fault I will get no results since I could not sleep in that lab. At my result appointment on January 10, I am told there is a diagnosis. I laugh. Yes, I laughed. "How can they get a result when I did not sleep?" She (Doctor) said, "No, you slept 117 mins and its 3 mins shy of the 2 hours we need, but it shows sleep apnea." I stopped breathing 28 times and showed a LOT of leg twitches and my stoppage was as long as 37 seconds. Hmmmmm...I am shocked. I was not expecting this. So, the next step, the week long at home test to see what pressure I need. That was hard, but I did it. I do not like the nose mask. However, I was 100% for 7 days and it showed I need to be at a 9 pressure. Something about 90% of the time I was at a 9 during sleep? In walks the Techs from the DME and I have been "Awarded at my cost" a beautiful new Fisher & Paykel Icon Premo with heated tube, mask, etc at a cost of $1,295.00. Nice of them to let me make payments after I put down 300.00. ;-P

Its 11:55pm and I am not in bed yet. I am here, learning about my machine and what to expect. I have a full face mask because I insisted on it. The doctor said what ever gets me to use the machine every night, then so be it. She was really nice. The DME tech wanted me to have the nasal mask, and was quite upset that I wanted a full face mask and even stated to me "Why do you want that, it will cost you an additional &50.00 for that!" I said "You are telling me I have to pay $1,200.00 anyway, what is an additional 50 gonna do to my budget? Besides, I do not like the nose mask and since I do not, I wont use it. So, its all a waste of money. He is a DME provider, not a DOCTOR! ok...enough about the man with the attitude problem due to his inability to be the doctor.

So....what do I do from here? I have 80 pounds to lose and I am 48 years old. I am female and have High Blood Pressure, but so far, no other major medical issues. I am looking for someone who can be like a mentor to help me adjust. Someone who can advise me (not medically) on tips and such for the adjustment period. Also, just someone to listen to me and be a sounding board. Any takers?

Thank you everyone!

Kelly

[Madalot]

Welcome to the forum, Kelly!

I just happened upon your post and wanted to make sure to welcome you. I like your attitude and sense of humor! Your intro was a good read -- and you have cats which I adore!!

Congratulations on sticking with the therapy. A lot of people aren't able to use the machine early on the way you have done. I'm not familiar with your cpap machine to give you any information, but I'm sure some of the others will chime in.

I'm glad you were able to get a full face mask, even though it sounds like your DME was a jerk about it! I went to a full face mask after 3 days and never looked back!

My situation is unusual and a little unique so I can't really offer you too much help, but there are a ton of people here that can.

Keep reading, keep posting and before you know it, you'll be a veteran at this!

[Slinky]

You came to the right place, Kathy. You'll find plenty of "takers" to help you out here. AND you are on the right track!!! We are PROUD of you for having the spunk to INSIST on the full face mask. Whether it proves to be THE right mask for you or not is immaterial. What is important is that you have the moxie to insist on taking control of your health care and not let a DME provider have control. (I've probably been thru at least a dozen masks before I found THE right two masks for me.

If you have insurance you might want to contact them and ask them what local DME CPAP suppliers they are contracted with. Hopefully you will have the option of more than just this current one. IF you don't have insurance coverage of CPAP equipment then you are FREE to go to ANY DME provider you want to - including buying online.

The ICON™ Premo is F&P's premium fixed-pressure CPAP with full compliance and efficacy reporting so you've got a good CPAP there. It is fairly new so you might not find too many here who have actual experience w/the Icon Premo but that only pertains to access to the efficacy data. The rest is pretty much common to all of us using a PAP.

Try this: go to http://www.fphcare.com/osa/cpap-solutio ... premo.html Look to the right of the page. There is a link to a video about downloading your sleep data from the ICON Premo.

And for the InfoSmart software: http://www.fphcare.com/userfiles/file/O ... 045370.pdf

Tell us which full face mask you are using. Be sure to check out the New Users and CPAP Wiki stickies at the top of the forum pages.

MADALOT!!! You snuck in here whilst I was digging up info on the ICON Premo and beat me to the punch in replying!!!

[tschultz]

Welcome to the forum and I'm glad to see you have started with your treatment. You will get used to it, but I'm only at my second week, and I'm rather lucky so far with almost no leaks to have to resolve.
My sleep apnea diagnosis was very bad, with 462 events over 4 hours, and for me I noticed almost an immediate improvement after starting CPAP.

My first night was interesting as I too have cats and the one that normally sleeps with me wanted nothing to do with "that funny hissing thing" on my face an quickly left the room. I did manage to get to sleep quite well and was sound asleep when I was then abruptly awaken at around 5:00AM but I was not gasping for air which sometimes happened nights before treatment so was unsure of why until my mask was slapped. I quickly found out that when one of the other cats decided to get on be bed and because there was something that may be threatening was slapping the mask on my face. Once he determined it was not a threat he then curled up and went to sleep but I did get a good chuckle out of it.

I've struggled with weight loss for many months and after nothing working I found out at least one of the reasons. When the sleep doctor told me about my sleep apnea he indicated that because I had gone untreated for so long my metabolism was affected because of low oxygen levels and this is why I was gaining weight instead of losing it. He said once I am on treatment for a while the metabolism will return to normal and then my weight loss attempts should be more successful. He said it was a vicious circle in that excess weight worsens obstructive apnea and this in turn worsens the weight; no wonder I gained 20 pounds after making dietary changes to lose weight.

This forum has been a great place, it has good and supportive people with all sorts of stories to tell and knowledge to share. Spend some time and read many of the past threads as many contain valuable information in one way or another. Don't be afraid to ask questions and I am sure you will learn a lot about sleep disorders and what to expect with ongoing treatment.

[robysue]

Welcome aboard!

You'll find plenty of folks here who will offer suggestions to address any problems you post concerning adjustment issues.

You'll find plenty of friendly shoulders to cry on when all you want and need to do is rant and rave for a bit.

You'll find plenty of people who'll cheer you on when you post your small, but significant steps forward!

So again, welcome aboard!

[bap40]

I will add my welcome also. You will learn a lot from these kind people.

[BusyLyn]

Welcome, Kathy!

We're all here to listen to you, offer tips on how to flourish with xpap, and to be your online friends. We're all at different stages of our xpaping journeys - I only started this past October - but there's a wealth of information here. Dive into the info and ask as many questions as you want.

Sleep apnea affects your whole body in strange and mysterious ways, including weight management and hypertension, to name your two problems. I didn't think I was overly sleepy (I had just learned to compensate somewhat ), but I was sent for a sleep study because of my resistant hypertension. The only difference post diagnosis is using my cpap machine (I love my full face mask, too), but already my blood pressure and pulse rate are significantly lower - very good things - and I hope that the specialist will begin to reduce my meds. Even if he doesn't, I feel so much better, and that's the most important thing.

Lyn

[Madalot]

Somebody made a boo-boo --

The original poster's name is Kelly.

[Kahfree]

Thank you everyone for your welcome. I am very happy to know that I can talk to other people who are on the machine even though we are at different stages. I am a daycare provider and one of my parents walked in today and told me that his dad has been on one for 30 years! wow...I would never imagine one can be on it so long. Seems like its a life dependent type of machine, yes? I assumed that I could just one day stop using it, but the doctor did tell me that she has only seen during her career TWO people who were able to lose the weight and keep off the cpap. I hope to become her 3rd patient.

So, as an update to my first night with a full mask. I put it on at 12:30 am and took it off at 3 am. I don't *think* I slept as I kept tossing and turning and trying to learn to breath with both my mouth and nose with this full mask. I have used the nasal mask for a week on the study machine at home to see what I need for pressure, and although I did not like it, I think I was a little use to it. I know that the full mask will eventually be the right choice for me, but the first night with it was like the first night with a nasal mask. They gave me the ResMed Mirage Quattro Full face mask.

As for the humidifier, I had to shut that off just minutes after beginning the therapy last night. I cant stand to be hot, and to be honest, did not enjoy hot air in my face. I felt like I was going to have a panic attack with that. Once I shut it off, I settled down a bit, but still was restless adjusting to the mask. I try to talk myself into it by telling myself that other people are doing it and that with time, I too can do it. I hate the feeling of being "trapped" with the mask on. Maybe a bit claustrophobic I suppose.

Tonight is another night. I am waiting for nap time with my daycare kids. LOL I am told to use it when I nap too and was told that in time, I wont need naps anymore. I sure hope that is correct.

I believe in being the spokesperson for my health when talking to doctors and others. If I don't speak up, who will? So, just a question is the pressure of 9 an average number? One complaint I had about the doctor yesterday was I asked to see the result papers and she said to me..."You wont be able to understand it anyway" Perhaps, but its MY results, just show me what your talking about. She did.

Thanks all...time to get to the lunch making. Good thing my daughter (age 27) works with me, she is helping out so much with the kids!

Kelly

ps. Yes Madalot, you are correct, its Kelly. I have been called Kathy in the past from people other places. Maybe since I am a Gemini, they are referring to my altar ego! HAHA

[Madalot]

Yes Madalot, you are correct, its Kelly. I have been called Kathy in the past from people other places. Maybe since I am a Gemini, they are referring to my altar ego! HAHA

Well, my name IS Kathy so it was confusing the heck out of me!!

[HoseCrusher]

Well... Kelly and Kathy welcome and I will be glad to throw in my two cents worth in an effort to help.

[vtfran]

Hello from another new user....

I was resistant to CPAP therapy for the last 10 years but incidents of inappropriate sleeping/snoring in public and personal testimony from CPAP users finally sent me off for some help. I was diagnosed with severe OSA after my sleep study - I have to say reading my own results gave me the willies ( AHI/RDI of 97,88 central apneas, 116 obstructive apneas, 146 mixed apneas, 67 hypopneas total; Apneas lasting up to 1.5 minutes during REM with oxygen desaturations below 50%) and I didn't even think I'd slept at all.

I had a titration study last week and was pleasantly surprised how easily I got used to the nasal pillow mask, settled in for the night, went with the flow ( so to speak). Anyway, my own machine arrived this afternoon...I'm a little anxious about starting out on my own at home but I figure it can only get better from here.

I think my main irritation to this point has been dealing with the process; the protocols, the time between studies, insurance vs no insurance..it's enough to drive anyone over the edge never mind someone with OSA. Obviously just because I've hemmed and hawed over this for 10 years doesn't mean I shouldn't have immediate attention, right? But I had my first consultation Nov 8th, polysomnogram Dec 17th and CPAP titration study Jan13th and my machine arrived today.

So onward and upward...I'm looking forward to getting on with this and so are my husband, fellow passengers on the monthly flights I take and just maybe I will no longer awake to find people smirking in my direction while I sit in Barnes & Noble

Thanks for having such a forum to post in...

Fran

[Kahfree]

Hello Fran,

Wow...10 years is a long time, especially since you have such a bad case of it. I have a friend who stops breathing in her sleep and her sister and I told her she has it, even with the recorded evidence we have on her she is reluctant to believe it. She said as soon as she loses the weight it will "go away". Well, I made this statement to her. "Lose the weight and guarantee that you will never gain an ounce back again the rest of your life. If you can not guarantee that it will remain off for the rest of your life, then you need to see a doctor" She then said, "Give me one month at the gym and eating better, if I am not able to stay with it, I promise to see a doctor", so I am holding her to it. BTW, both her maternal uncles are using a cpap and their numbers were life threatening. Her Maternal grandmother and her grandmothers brother both died in their sleep, and though they blame the heart, perhaps they also had undiagnosed sleep apnea?

All I can say is for me, I am willing to make the change and to wear this thing every night till I finally conquer it. (Meaning my inability to adjust to the closed in feeling) My two brothers and an aunt are on cpap. Is it hereditary?

I have a questions though that I have not had fully answered.

Is sleep apnea (Obstructive) a condition of weight, or is there truly a problem with the body? Is it both? Do all people with apnea also weight more or are there thin people with apnea?

I am enjoying reading all the posts on this board and have learned so much more in the last two days. Thank you everyone.

Kelly

[BusyLyn]

Oops! I'm sorry, Kelly! I'm usually so careful with names because mine gets misspelled or mispronounced so often, but I was too quick this time.

Lyn

[Marvinvwinkle]

Welcome to the site. Now you will start to live. The gasping will stop and you will learn to sleep at nite. It will take a few days to get used to the mask and machine, but you will soon adapt and you can concentrate on other issues in your life. Good luck.