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

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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 9:37 am

CPAP By Proxy wrote: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))
I'm going out on an errand. Will respond asap. Thank you again for your hugs and kindness. I'm glad your mom is doing better.
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 12:07 pm

archangle wrote:
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.
Aww, taco puppy. Thank you.

I won't ask them, because I don't want to stir up trouble, and tell me about it... the way some of my doctors have treated me! I had to diagnose my own gallstones, and BEG the gastro doctor to send me for an ultrasound. He was against it, and that is one sh*tty doctor. I got away from him asap.
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 12:13 pm

CPAP By Proxy wrote: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))
More (((HUGS))) for you.

My onset / waking centrals AHI at first test was 5.1, and overall mixed with OSA was 12 (in the lab.) I did a home study first, and they told me I didn't have sleep apnea, and then I went for test 1 at the lab, and they didn't put the mask on me on that night. I went back the second time for the titration.

I'm sorry that your mom had to go through all of that pain and trouble. I know that words can sometimes sound cheap or less effective when typed out in a forum, but I mean it when I say I am thankful she's OK.

I went for a cardiac work-up; had the echocardiogram - stress test on the treadmill, two days ago. I was worried I might have a heart problem, because my ankles sometimes get puffy in hot weather. I've had some pretty rough health anxiety since I had my gallbladder out, and the doctors have blown me off for other things. The only doctor who seemed to really care a lot is my cardio guy; he's really nice, and two members of my family recommended him to me.
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 12:16 pm

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.
My doctor is going to be monitoring my reports via the modem on the thing. If she gets on my case, I will try to work with her, not against her, even though I sometimes thinks she's a pill pushing, tough lady.
AirCurve10 ASV Bilevel, with Humidifier. F&P Simplus FFM. Using Sleepyhead software.

User avatar
chunkyfrog
Posts: 34377
Joined: Mon Jul 12, 2010 5:10 pm
Location: Nebraska--I am sworn to keep the secret of this paradise.

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

Post by chunkyfrog » Sat Mar 28, 2015 12:17 pm

I would bet my cute green butt that due to this infuriating "female problems" mentality,
a lot more women than men are going to the wrong doctor--and many need to get a better doctor before it kills them!
Even women doctors can suffer from this handicap, as the worst doctor I ever had dismissed my disabling cramps as something "I have to learn to live with". Guess what? I had huge fibroids! WTF was WRONG with her?

_________________
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: Airsense 10 Autoset for Her

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 12:35 pm

chunkyfrog wrote:I would bet my cute green butt that due to this infuriating "female problems" mentality,
a lot more women than men are going to the wrong doctor--and many need to get a better doctor before it kills them!
Even women doctors can suffer from this handicap, as the worst doctor I ever had dismissed my disabling cramps as something "I have to learn to live with". Guess what? I had huge fibroids! WTF was WRONG with her?
I'm sorry you had to go through that. (((HUGS))) I hope you are OK now.

One would think that some of these doctors got their medical degrees out of bubblegum machines. I have had to switch gynos, GP's, etc... Most of my doctors just want to feed me more pills, and my psychologist has been less than helpful, too. I'm looking for a new one, because this one has not given me any real skills on how to handle my anxiety issues sans taking anxiolytics. She also cut my talk time down from one hour, to 50 minutes, and now she has been scheduling other people at / on the day and time we originally agreed to meet on.

Basically, my doctors; other than the cardiologist, have driven me ape sh*t, and they have added to my health anxiety. The wait times were insane, too, which was REALLY stressful.
AirCurve10 ASV Bilevel, with Humidifier. F&P Simplus FFM. Using Sleepyhead software.