Newbie with questions

[jwerley]

Hi David....Glad to see others stepping in to give you help. On your question of new masks. You will get a complete mask when and if you choose to get a different mask. All headgears are different and specific to each mask. You will be able to get replacement parts as needed, and medicare has a replacement schedule for new supplies. If I can find a copy of one I will post it for you. Apria should also have one. I wanted to let you know since you are thiinking of changing DME's. With Medicare you will be renting your machine from Apria for the 1st 13 months, then if you meet medicare's compliance rules they will purchase it for you. So you are already contracted with Apria for at least the first 13 months for all of your supplies.

Hope this helps! Sleep well tonight.

Janice

[dir1944]

janice...thanks for answering. yes, i'm quite impressed with how many people respond to questions. that's really wonderful of them. i feel like i've accomplished so much today. thanks for the information about apria and medicare. i'm looking forward to a good nights sleep tonight. hope i get it!
thank you again for your support.

cheers
david

[dir1944]

here's an update about last night.

well, i put the mask on around 8pm and went to sleep around 9pm. as you know, i was hoping to get my first all nighter but it didn't happen. but i did sleep until 3:30 which is the longest i've slept. so, everyday is an improvement. i stayed up for around a half hour, then put the mask on and slept until 5:30. so i feel better about things now.

then i was watching cbs this morning show and they a doctor on telling about the new breakthrough for sleep apnea patients. then i found a link on here to a news story about the procedure. it's still in the trial stage but might prove to be really good for a lot of people. here's the link: http://www.news-medical.net/news/201401 ... h-OSA.aspx

i put my dog charlie's picture on my profie. he's a cockapoo and he's 2 1/2 years old. he's my best friend! he's a therapy dog and we visit a care center every tuesday and he loves going and seeing all his friends there.

cheers
david

[jwerley]

Hi David,

So glad to hear that you had a better night last night. It will just keep getting better as long as you keep using it and tweaking any and all of the things that make you uncomfortable with it. Are you going to be looking at your data and tracking your sleep graphs to see any improvements or problems?

The implanted stimulator sounds promising for those with plain sleep apnea. Doubt if it would work for someone like me with complex sleep apnea, but you never know. I expect these cpap machines to be dinosaurers someday, hopefully. .

Thanks for the update! Take care,

Janice

PS: Your dog is soooo cute!! Charlie is my grandson's name...LOL

[dir1944]

janice...so good to hear from you! where do you live in socal? i grew up in los angeles and the san fernando valley in tarzana. i went to taft high school and usc!

yes, i'm glad i had a better night last night and looking forward to a good night tonight too. i don't know how to use all the features of my machine but i'm going to see my doctor on monday and i have to take the machine with me so i'm sure he get information from the memory stick that's included with my machine. and then he can show me how i can get the information. i not really interested in reading it on a daily basis. i just want to know that i'm improving my apnea by using the machine. do you check your apnea regularly?

i have a grandson too! he's 10 1/2 yrs old but unfortunately he lives in silver spring, md so i'm lucky if i get to see him once a year. however, my daughter, who lives in scottsdale, just had a little girl on nov. 23rd so i get to see her all the time and i love it. her name is brooklyn and she's the most beautiful baby in the world!

thank you for the compliment about charlie.

cheers
davd

[jwerley]

Hi again......I grew up in the San Gabriel valley....Then called North Whittier Heights, now called Hacienda Heights. Attended La Puente High School and California Hospital School Of Nursing in LA.

As far as my Sleep Apnea treatment goes I did not track anything or even know that it could be tracked by the patients until I joined this forum in 2012. I suffered for years not getting proper treatment after being diagnosed with SA in 2005. I struggled along feeling dog tired all the time, more recently getting worse. I tried going to different doctors, getting an auto cpap machine, finally going to another doctor, up dating my machine to a S9 Auto....all to no avail....continued to feel dog tired and falling asleep everywhere, including driving. Finally went back to the original Hospital (different doctor) where I was diagnosed originally) and he found that I have complex SA and put me on an ASV machine. This has helped me sooooo much. I had a whole week (last week) of .00 AHI. Now it never goes above 0.70. I feel like a different person now getting 7-8 hours sleep per night, no nocturia either.

This forum has been an education, literally, in sleep apnea and it's treatment therapy. There are so many great people here who have helped me get to this point......and I have read, and read, and read here and elsewhere..... alot!!!! I was determined to learn everything that I could about SA and Cpap so I could get the help that I needed......I truely believe that I still would not be where I am today if I had not taken things into my own hands and learned as much as I have. You learn the right questions to ask your doctor, you learn how to point out to him/her the long desats and other negative findings on your graphs. Most docs won't even look at your detailed graphs unless you put them in his/her face, you learn how to deal with your DME.....in other words I forced the doctor to listen to me and treat me. I forced the DME to give me the equipment I wanted! I have had some doozy battles with DME's.

Anyway it has been a long road, but in the end I have come out smelling like a rose if there is such a thing with this disorder.

I meant to tell you also that you can go to our hosts web site CPAP.COM and look at masks for ideas on what you might want to try.

I hope you have another good night tonight!

Take care,

Janice

PS Congratulations Grampa on the new "Little One"....I have 7 of them, and they are precious!!

[dir1944]

janice...thanks for sharing your sleep apnea history with me. it's very educational. i was just diagnosed with sa in right after thanksgiving. i was in denial and didn't want to think about it. but, it seems that for the last 4 or 5 years or longer, i have always woken up after sleeping for about 4 or 5 hours. i didn't know why but i just did. but in september, when i would walk charlie, i felt short of breath when we started the walk but after awhile, i would be ok especially when we got home. i went for my annual physical in october and told my doctor about it. he wasn't sure what my problem was but immediately gave me lots of test for my heart especially. he also gave me an oxygenator to take home and measure my oxygen levels when i slept. well, that did the trick! all my heart tests came back fine but this was the sign of sleep apnea. he sent me to see a nurse practitioner at mayo who specializes in sleep apnea and she had me take a couple of tests and requested that i go to their sleep clinic to spend the night. well, the sleepover was horrible. i usually fall asleep in 10 to 15 minutes and there it took me over an hour to fall asleep. i went to sleep finally at 10pm and woke up, as usual around 3am. i told the technician that was normal for me so i read around 20 minutes in my kindle and then went back to sleep. i woke up again around 4:30am and that was it. i had it. i was anxious because i had to leave charlie alone and all i wanted to do was get home to him. the hospital room was like a very nice hotel room nothing medical about it so it wasn't the room nor the bed that affected me. i just didn't want to be there. so after this test showed i had sleep apnea, i went to see the sleep clinic supervisor. he's nota doctor but has been doing this for 25 years. he showed me a couple of machines and masks and i was still in denial. he told me he has had sleep apnea for 7 years and so i said, "well, just give the mask and equipment you use." that's how i got it. he just switched to the nuance nose gel pillows because they were the newsst on the market. the dme he recommended was not in network with my insurance company but they recommeded apria and they were in network so i wouldn't have to pay for anything. so here i am.

i like go on cruises and generally go once a year. well, i go the the cruise forum website and a couple of days ago, someone asked a question about using a cpap machine on their cruise. another person answered and told them it was no problem and the cruise line even provided distilled water. then i wrote in saying i was new to sleep apnea and that same person told me about this forum. i'm so grateful to that person because this forum has wonderful for me. everyone is so helpful and friendly and they all sure make me feel confident that i will succeed in sleeping all night. i'm not a details person. i would rather not think about what is happening to me. but i won't quit if i know it's for my own good. i've dribbled on too long so i'll say goodnite.

cheers
david

[dir1944]

thursday night update:
i did sleep fine but woke up at 2:30. i was disappointed it wasn't later. i turned off the machine and went into the den and used the computer for around a 1/2 hour. then i went back to bed, turned the machine on and slept until 6:15am. i really had a good sleep. i just don't know why i'm not sleeping the whole night through. could it be my body(brain) is in the habit of waking up that it does it automatically? i hope not. i'll ask the doctor about on monday. hopefully the weekend will be better for me. today is a week since i've started on the cpap and there's so much improvement since last friday, i never would have believed it after having such a terrible experience the first night.

i'm not going to update anymore. i'm on the right track, i believe and it will be just a matter of time now. i will check in here on a daily basis to see if there are any comments. as i improve and the cpap starts working more for me, i'll come to the forum and try to help other newbies like myself.

thanks to all of you for your advice and support. it means a lot to me.

cheers
david

[bavinck]

thursday night update:i just don't know why i'm not sleeping the whole night through. could it be my body(brain) is in the habit of waking up that it does it automatically? i hope not. i'll ask the doctor about on monday.

I have been on CPAP about 5 weeks now, and I am waking between 2-4 times a night, usually 2 or 3. My sleep doc was not concerned about it at this time, indicating this type of sleep behaviour can take some months to sort out and is confident that I will, in time, sleep through the night. He even told me that if I wake up, don't worry about it just get up and read a bit and go back to bed in 20-30 mins. Otherwise, he warned, I risk associating the bed with frustration. I thought it sounded like good advise, and was comforted by his feeling of not being concerned, that this is a common problem that is commonly fixed by time on CPAP.

[dir1944]

thank you so much for your response, bovinck. it's always comforting to know you're not alone. i guess i should be grateful that i only get up once a night. i can't thank you enough for what you wrote. now i have a feeling my doctor will probably say the same thing to me on monday.

cheers
david

[bavinck]

thank you so much for your response, bovinck. it's always comforting to know you're not alone. i guess i should be grateful that i only get up once a night. i can't thank you enough for what you wrote. now i have a feeling my doctor will probably say the same thing to me on monday.

cheers
david

No problem, glad to provide some encouragement. It sounds to me like things are progressing nicely for you.

[jwerley]

David.....The description of your experience with your first week is very normal and better than most. It just takes time to get used to sleeping with stuff on your face and wind blowing up your nose. Some people take to it immediately, some it takes weeks, others, months......You are doing very well!

Keep up the good work and let us know how things go!

Take care,

Janice

[dir1944]

so good to hear from you, janice. i guess my first week could have been worse but it wasn't a picnic either. but i do feel like i'm progressing and thank you for telling me so. it's seems others feel i'm doing well too! i don't think i could have coped without this website and the support of you and others like you. it means a lot and i hope i can provide that kind of support for others some day.

cheers
david

[SleepyStar]

From 3 months in: You'll get to the point where you may wake up but it'll be a quick move the hose and then you'll be right back out, no need to get up. At first I was still using the bathroom a few times at night but I weaned to the point I can sleep about 6 hours without having to get up to the bathroom, which is way better than the 45 minutes-1hr I was at before CPAP!

My mask setup isn't quite right and I know it, but I can tell you when you get at least close....you'll be amazed at how nice this whole "continuous sleep" thing feels. I was down to 2-3 hours of "sleep" before the tests...was not really functional, but now I can sleep 6-8, refill the water humidifier if need be while I'm having a potty break, and sleep more if I want on the weekends. I'm still in catch up mode a bit, but it does settle!

[dir1944]

wow, sleepystar, you've really made some wonderful progress. i can wait three months if i have to. i can progress even in one week. i guess i'm envious of the people who take to cpap the very first night. but i'm patient, although with lots of drama, and i know i will be there with the rest of you as soon as i can get there.

keep warm up there!

cheers
david