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New CPAP user by proxy
#41
(11-15-2014, 12:22 PM)vsheline Wrote: I would never use a rubber band, because it would make the Pulse Ox tighter on the finger.

Very very important to not allow the tape to cause more mechanical pressure on her finger.

Put the tape ONLY along the sides, so as to stabilize the Pulse Ox so it won't fall off as easily, without making the Pulse Ox any tighter, not even the least little bit. And change to another finger when one finger gets sore from the Pulse Ox.

Yes, that was one of the problems with the rubber band (the tightness making it uncomfortable), plus it came off anyway. The way I taped it was as you described, taping it on the sides and up my finger on the sides so that I could still see the display. That worked very well and didn't interfere with comfort and wouldn't cause a circulation problem.

Mom usually gets up in the middle of the night to go to the bathroom. So, if it's uncomfortable, she will probably take it off. It will probably be on anywhere from 2 to 4 hours, but no longer.

Thanks for the suggestions and information. Always appreciated.Thanks

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#42
Well, mom (age 83) is 14 days into her APAP therapy. She had a terrible time at first. Her GP just took the home Sleep Study (one night, no titration)company's suggestion of setting the pressure at 4 to 20.

The first night when the pressure ramped up to 16 or so, mom threw the mask across the room and went back to sleep. Can't say as I blame her. I had tried to explain everything to her but, with nightly oxygen deprivation, it wasn't getting thru to her. At this point, the APAP machine frightened her and she refused to use it. So, she skipped a night. Then, we had an appointment with her cardiologist who explained (again) that mom's CHF and AFIB were most likely CAUSED by the sleep apnea.

But, that night, she still wouldn't sleep with the APAP. I turned the pressure down to 4 to 8. She still wasn't interested. She was positive such a thing was impossible AND dangerous, even tho I had turned down the pressure. We had a big argument about it. She said, "YOU TRY SLEEPING WITH THAT DAMN MASK ON YOUR FACE!" So, I said, OK I WILL and, I did.

I was so exhausted from the events of the day and all the emotion and I slept like a baby. I LOVED it! I woke up once or twice to go to the bathroom, but put the mask back on when I got back into bed. Mom was astounded and agreed to try it for a nap.

The nap went well, so she used it that night. Since then, she has been very compliant. However, we are fighting the Big Leak Bear. We have tried all sorts of ideas that I have picked up from the forum. The only thing that worked was cutting the leg off of a pantyhose and putting it over her head and mask (cutting holes for eyes and hose and vents). That worked fabulously. But, she said it was such torture that she'd just as soon die and get it over with.

Because it was Thanksgiving, we didn't call the DME until the next Monday. He came by and tried to adjust her mask better and finally said, "I don't know why ResMed packs a standard size headgear with a SMALL mask. I'll have to order her a size small."

Geeze, I knew that the mask was small but the headgear isn't labeled, and I'm such a newbie at this, it didn't dawn on me. I thought WE were doing something wrong. So, he expects the new "small" headgear to be here this week. In the meantime, I started sewing on the current headgear. Mom is really small (about 5 feet and trying to keep 108 lbs on her). Reducing the size of the strap that goes over the head has helped considerably.

Last night she had a good night for about 6 hours, few events and no leaks. Unfortunately, she woke up at 3:00 a.m to go to the bathroom. When she put the mask back on, it leaked and the remaining hours were not too good.

In spite of all the problems, I think it is helping her tremendously. On her sleep study, her AHI was 44.8. ResScan says the last two days the AHI was around 9 to 10. AND...the lights are back on! She was so confused and out of it before. She is getting back to her usual intelligent self!

I have been slowly increasing the pressure that I had turned down to 8. I increase it by 0.2 to 0.4 about every 4 days. It's now up to 12. I can see that the OAs have decreased and, when she DOES have events, they are about half as long (on 11/27 she had a cluster of both central and obstructive events as long as 60 seconds EACH. Now, the events are no more than 26 seconds each). Also, when the pressure was 4 to 20, she had Centrals of about 10 per hour. Reducing the pressure and increasing slowly has reduced the centrals to about 4 to 5 per hour. The slow increase in pressure is not increasing the centrals and is bringing the OAs down and the hypopnea index, that was 17 on the sleep test, is down to 0.4.

Sorry for the long story.Eat-popcorn I wanted to update everyone that helped me and thank all for this forum. It is a pearl beyond price!
Regards, Sue
Reply
#43
Greetings Sue;

WOW! This is such great news!!

Getting a parent "back" mentally is such a gift. You have been working SO hard on this and it is paying off. Your mom has, in her way, been working hard on this as well; though at first no one could tell that she was.

The learning process is never easy but you have been the "rock" for your mom.
Evpraxia in the Pacific Northwest USA
Diagnosed: 44 AHI when supine, O2 down to 82%
Treated since 20 Sept 2014:: 0.7 AHI, Settings 7-15, EPR on Full Time at Level 3
Better living through CPAP/APAP machines!
Reply


#44
(12-06-2014, 11:49 AM)suedanem Wrote: Well, mom (age 83) is 14 days into her APAP therapy. She had a terrible time at first. Her GP just took the home Sleep Study (one night, no titration)company's suggestion of setting the pressure at 4 to 20.

The first night when the pressure ramped up to 16 or so, mom threw the mask across the room and went back to sleep. Can't say as I blame her. I had tried to explain everything to her but, with nightly oxygen deprivation, it wasn't getting thru to her. At this point, the APAP machine frightened her and she refused to use it. So, she skipped a night. Then, we had an appointment with her cardiologist who explained (again) that mom's CHF and AFIB were most likely CAUSED by the sleep apnea.

But, that night, she still wouldn't sleep with the APAP. I turned the pressure down to 4 to 8. She still wasn't interested. She was positive such a thing was impossible AND dangerous, even tho I had turned down the pressure. We had a big argument about it. She said, "YOU TRY SLEEPING WITH THAT DAMN MASK ON YOUR FACE!" So, I said, OK I WILL and, I did.

I was so exhausted from the events of the day and all the emotion and I slept like a baby. I LOVED it! I woke up once or twice to go to the bathroom, but put the mask back on when I got back into bed. Mom was astounded and agreed to try it for a nap.

The nap went well, so she used it that night. Since then, she has been very compliant. However, we are fighting the Big Leak Bear. We have tried all sorts of ideas that I have picked up from the forum. The only thing that worked was cutting the leg off of a pantyhose and putting it over her head and mask (cutting holes for eyes and hose and vents). That worked fabulously. But, she said it was such torture that she'd just as soon die and get it over with.

Because it was Thanksgiving, we didn't call the DME until the next Monday. He came by and tried to adjust her mask better and finally said, "I don't know why ResMed packs a standard size headgear with a SMALL mask. I'll have to order her a size small."

Geeze, I knew that the mask was small but the headgear isn't labeled, and I'm such a newbie at this, it didn't dawn on me. I thought WE were doing something wrong. So, he expects the new "small" headgear to be here this week. In the meantime, I started sewing on the current headgear. Mom is really small (about 5 feet and trying to keep 108 lbs on her). Reducing the size of the strap that goes over the head has helped considerably.

Last night she had a good night for about 6 hours, few events and no leaks. Unfortunately, she woke up at 3:00 a.m to go to the bathroom. When she put the mask back on, it leaked and the remaining hours were not too good.

In spite of all the problems, I think it is helping her tremendously. On her sleep study, her AHI was 44.8. ResScan says the last two days the AHI was around 9 to 10. AND...the lights are back on! She was so confused and out of it before. She is getting back to her usual intelligent self!

I have been slowly increasing the pressure that I had turned down to 8. I increase it by 0.2 to 0.4 about every 4 days. It's now up to 12. I can see that the OAs have decreased and, when she DOES have events, they are about half as long (on 11/27 she had a cluster of both central and obstructive events as long as 60 seconds EACH. Now, the events are no more than 26 seconds each). Also, when the pressure was 4 to 20, she had Centrals of about 10 per hour. Reducing the pressure and increasing slowly has reduced the centrals to about 4 to 5 per hour. The slow increase in pressure is not increasing the centrals and is bringing the OAs down and the hypopnea index, that was 17 on the sleep test, is down to 0.4.

Sorry for the long story.Eat-popcorn I wanted to update everyone that helped me and thank all for this forum. It is a pearl beyond price!
Regards, Sue
Hi Sue,
What a wonderful story and I hope things continue to go well with your Mom's CPAP therapy. My mom rebelled against her CPAP machine for quite a while, but she was eventually able to get into the swing of things and got along pretty well with it before she passed.
Your mom is lucky to have you as a caregiver, both of you keep up the GREAT work, CONTINUED SUCCESS.!
trish6hundred
Reply
#45
Thanks everyone. Mom had the best night ever last night. My hand-stitching on the headgear worked perfect. 95% leak rate was 2.4, Max was 12. AHI = 6.7 YES!!! OAs just keeps coming down. CAs staying level at about 4.0.

And yes, Evpraxia, it's been the absolute BEST to be able to restore mom's mental capacities. It's been simply amazing. She is so sharp now. I had taken over paying her bills and etc. She has taken the job back. I did all her shopping, she is now driving again and doing her own shopping and goes to physical therapy for her broken hip. I wonder how many of our "elders" get a dementia diagnosis when the problem is caused by apnea and low 02 sats at night.

All of this has been hell, but there have been good things that have happened because of it. One of my sisters is making plans to move closer to us so that, if the time comes that mom needs more care, it isn't all on my shoulders. (I'm really loving this plan!!)

And.... remember that first night when I used the APAP machine to prove to mom that it wouldn't kill her? Well, the pressure was set to 4 to 8. And I had an AHI of 7.9! The auto pressure went up to 8 and stayed there. So, I called my doctor and I'm set up for a sleep study too. I have a feeling I will no longer be a "CPAP User by Proxy"!

I think I'm at the point that mom was 20 years ago. Mild apnea that, if it had been caught at that time, she would NOT have Congestive Heart Failure, Atrial Fibrillation and Right Atrial Enlargement (all of these things can be cause by sleep apnea).

I'm so glad this forum was available. I have learned so much. When I get a chance, I will post mom's success story on the Personal Success Stories thread. Remember, she is 83 (soon to be 84). I hope others can learn from her story that you are NEVER too old not only to adapt and change, but that your life CAN GET BETTER. And, a broken hip when you are over 80 is NOT an automatic death sentence (she did almost die in the hospital because of the untreated apnea during anesthesia and heart problems). But, because of the APAP treatment, mom has her mental abilities back and the motivation and energy to put into recovery. In addition, her BP is lower every day and she is taking less and less BP meds. I'm looking forward to seeing and reporting on what kind of recovery an 83 yr old heart and body can make with proper treatment.

Thanks once again
SueThanks
Reply
#46
Sue,
This is Absolutely Terrific News!!! What a thrill that you mom can do these things for herself now.

And, you are very wise to get yourself checked out for sleep apnea. Whether genetics, body type, bone structure or what, sleep apnea does tend to run in families.

Evpraxia in the Pacific Northwest USA
Diagnosed: 44 AHI when supine, O2 down to 82%
Treated since 20 Sept 2014:: 0.7 AHI, Settings 7-15, EPR on Full Time at Level 3
Better living through CPAP/APAP machines!
Reply




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