DME appointment on Tues, at home. Feeling wimpy and scared.

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JV1967
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DME appointment on Tues, at home. Feeling wimpy and scared.

Post by JV1967 » Sat Mar 28, 2015 7:58 am

I'm so new to all of this, and I'm starting to worry. It's bad enough that I'm already on a low dose of Clonazepam, to calm my nerves, but this change is scary to me. I know I need to use the ResMed Aircurve 10, ASV machine, but the "what-ifs" are drifting through my mind. The doctor has me on BiPap mode, and in the lab, it would not let me finish my breaths. It kind of freaked me out.

I won't likely have access to change any settings on the machine, because it's "rent to own" by the DME. I hope they help me, and I hope my mask doesn't leak a lot; and that I can turn the leak alarm off if need be. Another problem I have is that I've been a stomach and side sleeper for years, and with a ResMed for her full face mask, I likely won't be able to tummy sleep, and I'm scared to sleep on my back.

This might sound corny, but I need a hug. I have the fear. Did you feel this way when you started out on this therapy?
AirCurve10 ASV Bilevel, with Humidifier. F&P Simplus FFM. Using Sleepyhead software.

CPAP By Proxy
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Joined: Tue Mar 10, 2015 8:18 am

Re: DME appointment on Tues, at home. Feeling wimpy and scared.

Post by CPAP By Proxy » Sat Mar 28, 2015 8:25 am

JV1967 wrote:I'm so new to all of this, and I'm starting to worry. It's bad enough that I'm already on a low dose of Clonazepam, to calm my nerves, but this change is scary to me. I know I need to use the ResMed Aircurve 10, ASV machine, but the "what-ifs" are drifting through my mind. The doctor has me on BiPap mode, and in the lab, it would not let me finish my breaths. It kind of freaked me out.

I won't likely have access to change any settings on the machine, because it's "rent to own" by the DME. I hope they help me, and I hope my mask doesn't leak a lot; and that I can turn the leak alarm off if need be. Another problem I have is that I've been a stomach and side sleeper for years, and with a ResMed for her full face mask, I likely won't be able to tummy sleep, and I'm scared to sleep on my back.

This might sound corny, but I need a hug. I have the fear. Did you feel this way when you started out on this therapy?
((((HUG)))))

Mom was so afraid of this therapy, she threw the mask across the room the first night and refused to put it back on. Her "therapy" is an auto CPAP set 4-20 and it immediately went up to about 16 - 17 when she fell asleep. To get her to wear it again, I slept with it all night the next night to show her it wouldn't kill her. (I also found out I better have a sleep study too!).

Every time you find yourself worrying try this:
Take a deep breath. As you breath in, think to yourself, "breathe in serenity and peace" and as you breathe out think "Breathe out worries and fear." Continue for at least a few minutes.

You are worrying about the future about things that probably won't happen. You don't need to waste the little bit of energy you do have on worrying! It will work out!!

Mom sleeps on her side quite nicely with the mask you have. It does leak abit but over time, we worked it out. If you have problems, post and you'll get some help with every thng you mentioned you worry about.

Kind regards and (((HUGS)))
Last edited by CPAP By Proxy on Sat Mar 28, 2015 8:30 am, edited 1 time in total.

JV1967
Posts: 178
Joined: Wed Mar 11, 2015 7:36 am
Location: Northeastern USA

Re: DME appointment on Tues, at home. Feeling wimpy and scared.

Post by JV1967 » Sat Mar 28, 2015 8:26 am

Thank you for the hug, and the advice. Much needed. Do you use a special pillow? We have the same mask. Have you been able to sleep on your stomach at all? Any major leak issues?
AirCurve10 ASV Bilevel, with Humidifier. F&P Simplus FFM. Using Sleepyhead software.

CPAP By Proxy
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Re: DME appointment on Tues, at home. Feeling wimpy and scared.

Post by CPAP By Proxy » Sat Mar 28, 2015 8:40 am

JV1967 wrote:Thank you for the hug, and the advice. Much needed. Do you use a special pillow? We have the same mask. Have you been able to sleep on your stomach at all? Any major leak issues?
Mom has never been a stomach sleeper and I don't think she's tried to sleep on her stomach. She doesn't use a special pillow really, however, as she sleeps on her side, she puts a small piece of memory foam (I had some left over from pillows I've made in the past) under her chin/cheek. Its barely 4 inches by 6 inches, if that big. That keeps the mask from pressing against her pillow and leaking.

Yes, to begin with, that darn thing leaked because mom's pressures go so high (up to 20). We are currently set up to see the sleep doc in a couple of weeks and they will probably put her on biLevel therapy. BUT..... in the meantime, we fussed with the mask until we now have it just right. It doesn't leak at all.

You will probably have to deal with a little bit of leaks. But don't worry, you can work it out. The important thing to remember is that your face is a different shape when you lie down. So, adjust the mask sitting up, but fine-tune it as you are laying down. That really helps.

Don't WORRY! Remember!! "Breathe in serenity and peace, Breathe out worries and fear"

More (((HUGS))))

JV1967
Posts: 178
Joined: Wed Mar 11, 2015 7:36 am
Location: Northeastern USA

Re: DME appointment on Tues, at home. Feeling wimpy and scared.

Post by JV1967 » Sat Mar 28, 2015 8:46 am

CPAP By Proxy wrote:
JV1967 wrote:Thank you for the hug, and the advice. Much needed. Do you use a special pillow? We have the same mask. Have you been able to sleep on your stomach at all? Any major leak issues?
Mom has never been a stomach sleeper and I don't think she's tried to sleep on her stomach. She doesn't use a special pillow really, however, as she sleeps on her side, she puts a small piece of memory foam (I had some left over from pillows I've made in the past) under her chin/cheek. Its barely 4 inches by 6 inches, if that big. That keeps the mask from pressing against her pillow and leaking.

Yes, to begin with, that darn thing leaked because mom's pressures go so high (up to 20). We are currently set up to see the sleep doc in a couple of weeks and they will probably put her on biLevel therapy. BUT..... in the meantime, we fussed with the mask until we now have it just right. It doesn't leak at all.

You will probably have to deal with a little bit of leaks. But don't worry, you can work it out. The important thing to remember is that your face is a different shape when you lie down. So, adjust the mask sitting up, but fine-tune it as you are laying down. That really helps.

Don't WORRY! Remember!! "Breathe in serenity and peace, Breathe out worries and fear"

More (((HUGS))))
Thank you again for your kindness and help. My pressure is supposed to go to 15, but my machine is an ASV on Bilevel setting. I guess it is just a matter of trying different things out with pillows. I don't like to side sleep, because it makes my left hip hurt. I can't sleep on my right side, because I have positional vertigo, from a head injury; domestic violence survivor.
AirCurve10 ASV Bilevel, with Humidifier. F&P Simplus FFM. Using Sleepyhead software.

Nyre
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Re: DME appointment on Tues, at home. Feeling wimpy and scared.

Post by Nyre » Sat Mar 28, 2015 8:52 am

((((HUGS)))). Hope things get better for you. Right now I'm dealing with anxiety myself waiting to start therapy. The doctor went on vacation and I'm waiting on my titration results

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Pugsy
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Re: DME appointment on Tues, at home. Feeling wimpy and scared.

Post by Pugsy » Sat Mar 28, 2015 8:56 am

The Falcon sleeping position can be managed with a full face mask. You can still sleep on your stomach with just a little adjustment mainly in the bed pillow thing so that the mask doesn't have a lot of pressure on it from a bed pillow.
See this thread
viewtopic/t103761/viewtopic.php?f=1&t=1 ... ow#p987727

The bed pillow thing..that's pretty much going to be a trial and error experiment that you will have to do yourself because of your own personal preferences but it can be sorted out.
One of those special cpap pillows with the cut outs for the mask might suit your needs. Before spending a bunch of money on the fancy cut out pillows you might just go to WalMart and get one of the cheap memory foam pillows and cut out the sides to accommodate the mask and see if it comes close to working for you.

_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier
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archangle
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Re: DME appointment on Tues, at home. Feeling wimpy and scared.

Post by archangle » Sat Mar 28, 2015 9:07 am

Hugs

Buck up. Get a positive attitude.

Tell yourself, "I CAN be an A**HOLE" when I need to be. Make them do it right.

Don't worry about the rental machine bit. If you need to adjust the settings, it's easy to do. It's unlikely anyone will notice, but even if they to *$#&@! them.

However, don't go making changes willy-nilly. You can screw up your therapy if you do it wrong.

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JV1967
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Re: DME appointment on Tues, at home. Feeling wimpy and scared.

Post by JV1967 » Sat Mar 28, 2015 9:09 am

Nyre wrote:((((HUGS)))). Hope things get better for you. Right now I'm dealing with anxiety myself waiting to start therapy. The doctor went on vacation and I'm waiting on my titration results
Thank you. I hope things get better for you, too, and that you get the right therapy based on your needs. I also hope your anxiety improves. I know how bad it can be, as I have had it for a while. (((((HUGS))))) back.
AirCurve10 ASV Bilevel, with Humidifier. F&P Simplus FFM. Using Sleepyhead software.

JV1967
Posts: 178
Joined: Wed Mar 11, 2015 7:36 am
Location: Northeastern USA

Re: DME appointment on Tues, at home. Feeling wimpy and scared.

Post by JV1967 » Sat Mar 28, 2015 9:10 am

Pugsy wrote:The Falcon sleeping position can be managed with a full face mask. You can still sleep on your stomach with just a little adjustment mainly in the bed pillow thing so that the mask doesn't have a lot of pressure on it from a bed pillow.
See this thread
viewtopic/t103761/viewtopic.php?f=1&t=1 ... ow#p987727

The bed pillow thing..that's pretty much going to be a trial and error experiment that you will have to do yourself because of your own personal preferences but it can be sorted out.
One of those special cpap pillows with the cut outs for the mask might suit your needs. Before spending a bunch of money on the fancy cut out pillows you might just go to WalMart and get one of the cheap memory foam pillows and cut out the sides to accommodate the mask and see if it comes close to working for you.
Thank you, Pugsy. You are so kind.
AirCurve10 ASV Bilevel, with Humidifier. F&P Simplus FFM. Using Sleepyhead software.

JV1967
Posts: 178
Joined: Wed Mar 11, 2015 7:36 am
Location: Northeastern USA

Re: DME appointment on Tues, at home. Feeling wimpy and scared.

Post by JV1967 » Sat Mar 28, 2015 9:11 am

archangle wrote:Hugs

Buck up. Get a positive attitude.

Tell yourself, "I CAN be an A**HOLE" when I need to be. Make them do it right.

Don't worry about the rental machine bit. If you need to adjust the settings, it's easy to do. It's unlikely anyone will notice, but even if they to *$#&@! them.

However, don't go making changes willy-nilly. You can screw up your therapy if you do it wrong.
Thank you, archangle. I will make sure they do it right, but I don't know if I am locked out of the settings on the machine. I suppose I will just have to ask them when they get here. I don't want to mess with it too much, because I want the therapy to work correctly. By the way, in an earlier post, I had mentioned how cute your avatar is; the Pupito. I don't know if you saw that, but the picture makes me smile.
AirCurve10 ASV Bilevel, with Humidifier. F&P Simplus FFM. Using Sleepyhead software.

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Pugsy
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Re: DME appointment on Tues, at home. Feeling wimpy and scared.

Post by Pugsy » Sat Mar 28, 2015 9:24 am

They can't lock you out of your settings though they might tell you that you can't go there.
All it takes to get to the clinical setup menu is a little "secret" combination of which buttons to push. The manual I suggested that you get will explain the button code thing along with some other information about what your machine offers you.

For ASV therapy designed to target centrals the machine is likely going to be set up with a range of pressures and the machine responds as needed to the centrals and/or any obstructives you might have. You aren't going to need (or really want to) to playing around with the pressure settings themselves especially when first starting therapy. There is an adjustment period where both you and your machine need to learn to work together.

When you first get the machine...use it long before bed while watching TV or reading a book so that you don't have extra pressure of "I need to fall asleep" going through your head.

_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier
Additional Comments: Mask Bleep Eclipse https://bleepsleep.com/the-eclipse/
I may have to RISE but I refuse to SHINE.

If you want to try the Eclipse mask and want a special promo code to get a little off the price...send me a private message.

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archangle
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Re: DME appointment on Tues, at home. Feeling wimpy and scared.

Post by archangle » Sat Mar 28, 2015 9:27 am

JV1967 wrote:I don't know if I am locked out of the settings on the machine. I suppose I will just have to ask them when they get here. I don't want to mess with it too much, because I want the therapy to work correctly. By the way, in an earlier post, I had mentioned how cute your avatar is; the Pupito. I don't know if you saw that, but the picture makes me smile.
Taco puppy sends puppy kisses, too.

Don't ask them about being locked out. You are not locked out. You can easily change the settings yourself. Asking will only stir up trouble.

The medical mafia believes in the mushroom theory. Keep them in the dark, feed them manure, and when their heads pop up, cut them off. If you ask, they'll tell you it's impossible, it's illegal, that the machine will explode and that it will blow you up like a balloon and cause your eyes to pop out.

No need to stir up the lowlifes by asking questions or mentioning that you're not going to be a good little peasant who does what she's told by your godlike medical betters.

_________________
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Also SleepyHead, PRS1 Auto, Respironics Auto M series, Legacy Auto, and Legacy Plus
Please enter your equipment in your profile so we can help you.
Click here for information on the most common alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check for yourself.

Useful Links.

CPAP By Proxy
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Re: DME appointment on Tues, at home. Feeling wimpy and scared.

Post by CPAP By Proxy » Sat Mar 28, 2015 9:30 am

I mentioned that I slept one night with mom's APAP to convince her that it wasn't going to kill her (she's 84). I slept like a LOG! It leaked a little but it didn't wake me. It went up to about 10 and I had about 3.3 apneas per hour. So, I asked my doc for a home sleep study. I had an AHI of 33. So now, I'm not in the CPAP by Proxy category anymore. I'm on APAP.

I use the same equipment mom does (Airsense 10 machine and the F10 for her mask). Right from the beginning, I have had no problems. The most important thing it has done for me is take away the FOG I was living in. I had such a hard time thinking and remembering anything. (I just thought it was all the stress I was dealing with) The fog went away almost immediately. I've been so busy worrying and caring for mom, I haven't really dwelt on my therapy. It works, I'm glad I discovered that I had OA because I KNOW most of mom's problems stem from untreated OA.

I understand your problems with sleeping on your side. This all started for us when Mom fell and broke her hip last August. It took a LONG time to get everything sorted out. She was in two different hospitals (actually 3 if you count the one night she spent in the rehab hospital). The first hospital released her (to a rehab hospital, essentially a care home) without realizing she was in acute congestive heart failure. I'm just stymied by this as the very next day, when they weighted her at the rehab hospital, this normally 113 lb little lady weighted 143lb, she was retaining 30 lbs of fluid and could barely breathe. So, off she went to another hospital. They got a cardiologist and a pulmologist on board and determined that she also had Atrial Fibrillation and severe right atrial enlargement along with the CHF. And, without a doubt, the afib and the right atrial enlargement were caused by her untreated OS which she has probably had for years.

Mom's hip has done a fairly good job of healing, however, she can't sleep on her left side because it hurts. And, she can't sleep on her back because then she has tons of OA. But, she is adjusting. She sleeps with a backpack full of towels so that she won't roll over on her back. Me, I toss and turn and sleep on both sides and my back, but not on my stomach. Just not a sleep position for me. I think others here are stomach sleepers and will probably have some advice for you.

One other thing I wanted to say, mom is doing well on the therapy, for the most part. The FIRST thing I noticed when she started therapy is that her mind is BACK! I really thought she was in the beginnings of senile dementia. NOT! It was the lack of O2 at night. Now that she isn't desaturating every night, she is really with it. She is even back to driving (but only around our small town).

I was really worried about our first meeting with the DME guy too. But, it turned out really well. He was very helpful and cooperative. I also insisted that we get the autoset model so that I could track mom's therapy with ResScan software. (I didn't tell the DME I was going to do that). They had no objections to giving her the latest Resmed autoset. Altho the DME is slower than a snail when shipping supplies, on the whole, I haven't had any other problems with them.

I REALLY recommend tracking your therapy with software. Having the feedback every morning REALLY helps mom. She sits at the computer with me every morning and goes over whatever happened during the night. We did make changes to her therapy. It was set to 4 to 20. She had tons of apneas while the machine built up pressure so, little by little, I raised the bottom pressure. That brought down the number of apneas considerably. It is now set to 10 to 17. I eventually brought down the top pressure because she couldn't handle 20 cm H20. That mask would go flying across the room every time!!

On a good night her AHI (at her current settings) is 5.5. On a not so good night, it's around 9 to 10. (That would be considered mild sleep apnea). We HAD to make some sort of compromise because mom just couldn't breathe OUT (even with EPR set to 3) when the pressure got up to 20.

You can handle all of this. I didn't have any knowledge of sleep apnea or dealing with doctors and etc. I've learned! You will too.

((HUGS))
Last edited by CPAP By Proxy on Sat Mar 28, 2015 9:33 am, edited 1 time in total.

JV1967
Posts: 178
Joined: Wed Mar 11, 2015 7:36 am
Location: Northeastern USA

Re: DME appointment on Tues, at home. Feeling wimpy and scared.

Post by JV1967 » Sat Mar 28, 2015 9:32 am

Pugsy wrote:They can't lock you out of your settings though they might tell you that you can't go there.
All it takes to get to the clinical setup menu is a little "secret" combination of which buttons to push. The manual I suggested that you get will explain the button code thing along with some other information about what your machine offers you.

For ASV therapy designed to target centrals the machine is likely going to be set up with a range of pressures and the machine responds as needed to the centrals and/or any obstructives you might have. You aren't going to need (or really want to) to playing around with the pressure settings themselves especially when first starting therapy. There is an adjustment period where both you and your machine need to learn to work together.

When you first get the machine...use it long before bed while watching TV or reading a book so that you don't have extra pressure of "I need to fall asleep" going through your head.
Excellent advice once again. Thank you, Pugsy. It means a lot to me that you and others here are helping me out. My onset-centrals scare the p**p out of me sometimes. I will try to take my night dose, and then hang out with the mask on for a bit before I lie down to sleep. I did that at the lab, and it was OK, other than having to breathe on the machine's rate, and not my own. I sure hope this machine can be set for my breathing rate, or it senses it automatically and adjusts. The lab machine was way too fast. I'm usually at between 11-12 a min; in a relaxed state, and that machine was forcing me way too much.
AirCurve10 ASV Bilevel, with Humidifier. F&P Simplus FFM. Using Sleepyhead software.