Status
Not open for further replies.

4tloml

Senior member
Joined
Sep 15, 2014
Messages
576
Reason
CALS
Diagnosis
04/2013
Country
US
State
CA
City
Suburban
We've been checking my husband's O2 during the day but hadn't at night. He has complex sleep apnea and REM Behavior Disorder (RBD) and has been on melatonin and a "Respironics BiPAP autoSV Advanced" for around 2 years at night. He's been on the Trilogy on and off throughout the day since January. We only bring the Trilogy when we travel, however, for day and night. Brought it into clinic this month, RT checked it out and she and doc decided to monitor overnight O2. Did that last night--it was running around 86-88 all night long.

He's always saying he's sleeping great, feels rested in the morning, etc. And I do know he sleeps through the night without much tossing and turning any more. But isn't that awfully low O2 sat for night?

Laurie, you wrote on a diferent thread (I searched for answers before starting another one):

It is always good to consider the possibility that as ALS progresses, settings that are static pressure control (IPAP/EPAP locked in) or even dynamic (volume target set or apnea-controlled) settings could use tweaking, but most people on the list don't want to fool w/ it, so I've mostly stopped saying it.​
Do you think tweaking the settings could have enough impact? Is this the type of situation when the docs order oxygen to be bled through the BiPAP? What is the risk for that leading to too much CO2?

We have yet to hear from the doc, but I want to be prepared with questions/concerns when we do. I get more good info here than anywhere else, so any input would be much appreciated! TIA!
 

GregK

Moderator emeritus
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
City
Colorado Springs
My overnight O2 was dropping below 90 so they put me on 2lpm O2. At night it bleeds into my Trilogy.
2 liters is not an issue. The problem comes when there is too little air exchange. Without the 'help' of the BiPAP, adding oxygen can suppress the deep breathing reflex that low O2 triggers. The BiPAP sorta forces deep breathing assuming it's set correctly.

BigMark is also using 2lpm of O2.
 

gooseberry

Extremely helpful member
Joined
Jul 2, 2014
Messages
3,457
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
City
Tampa
Steve had it for awhile but his va pulmo took him off once they adjusted his trilogy. He is pretty stable in his fvc.
 

4tloml

Senior member
Joined
Sep 15, 2014
Messages
576
Reason
CALS
Diagnosis
04/2013
Country
US
State
CA
City
Suburban
Greg, thanks for letting me know what's working for you. I suspect we'll be seeing an oxygen bleed and BiPAP adjustment, too.

Gooseberry, did Steve's night sats go up after the adjustment then--and enough to do away with the oxygen? Jeff's FVC was still at 60% on Aug. 7th--only 5% decrease in 9 months, so the low night reading was a surprise. That's great Steve's FVC is stable and he was able to go off the oxygen, too.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,251
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I would definitely try adjusting the BiPAP settings before resorting to oxygen. Adding oxygen doesn't change the muscular work of breathing, which, if more than it needs to be, may accelerate loss of respiratory function.

Send me or post Jeff's current settings and I can suggest a starting point to try, and also are you recording data on the card?
 

4tloml

Senior member
Joined
Sep 15, 2014
Messages
576
Reason
CALS
Diagnosis
04/2013
Country
US
State
CA
City
Suburban
Laurie, thank you for offering to help. When it comes to technology, I am pretty inept. I did finally get the settings on my guy's nighttime machine. It is the "Respironics BiPAP autoSV Advanced (System One 60 Series )(960P)"

I think these are the relevant settings:

Max Pressure -- 21 cmH2O
Min EPAP -- 6 cmH2O
Max EPAP -- 15 cmH2O
Min Pressure Support -- 2 cmH2O
Max Pressure Support -- 15 cmH20
Bi-Flex Setting -- 2
Bi-Flex Lock -- Off
Breath Rate -- Auto

He's had these setting for more than a year.

Now here are the summary numbers for the last 30 days:

Average EPAP -- 6.5 cmH2O
Average Pressure Support -- 2.4 cmH2O
90% of the time device EPAP pressure was <= 7.6 cmH2O
90% o the time device Pressure Support was <= 3.2 cmH2O
Average breath rate -- 19.3 bpm
Average minute vent -- 8.7
Average AHI -- 0.5

Average Tidal Volume was not on the summary, but the graphs for the past 4 days indicate it was 450, 450, 470 & 471.

I took this device into our supplier so they could get this data for me Friday. It is recording on a card. I also had them fax it to the clinic.

What would be your advice? And would these numbers indicate a cause for the very low (in the 80s most of the night with drops into the 70s) O2 sat rates?

Thank you Laurie.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,251
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
That level of pressure support (difference between IPAP and EPAP -- in other words, the "size of the breath)" is less than what I set up for my SIL's new CPAP today. She does not have any neuromuscular dz. The minimum EPAP (exhalation pressure) is nearly twice what I set up for her, and she can breathe against resistance better than a PALS. So there seems to be room for improvement!

Is his resting respiratory rate as high as when he's on the BiPAP (19?) If not, we want to take that lower, which has to do with a couple of settings below.

How tall is he? That's how the ideal tidal volume is calculated. That would help us see if we need to improve the TV. And how much does he weigh?

Since Jeff has apnea to start with, we can use the machine data going forward (available from the info screen) to make sure we don't trigger that in trying to help his ALS. Right now, though he has <1 AHI which is pretty much perfect. And what I propose should not increase his IPAP, which is normally what triggers central apnea in complex pts. If the lower EPAP collapses his airway, you would know by snoring, and could adjust it higher. But since he's had ALS for a while, the apnea has likely changed in nature.

Pending the answers to these questions, which can help with other fine-tuning, I would change the minimum EPAP to 4, and change the minimum pressure support to 4. This will give him bigger breaths and less resistance when he breathes out. I would also max out the Bi-Flex setting to 3. There may also be a rise time setting that should be set in the middle.

So short answer is, yes, these settings could be driving lower sats. He's taking shallow breaths, breathing against resistance and has a pretty high RR for someone in sleep, even with ALS. There is controversy on the best RR, but it could be worthwhile to try to reduce it, depending on his resting RR when awake.
 

4tloml

Senior member
Joined
Sep 15, 2014
Messages
576
Reason
CALS
Diagnosis
04/2013
Country
US
State
CA
City
Suburban
Laurie, that makes sense. I'll change the settings today and see how he does the next few nights. He is 6'1" and weighs around 265.

Thanks so much. I'd definitely like to get his settings right before adding any oxygen--maybe even avoiding it.

Are/were you an RT? Or did you learn all this from necessity? All this is still a foreign language to me and the hardest thing I'm trying to learn about ALS. We really appreciate your help!
 

gooseberry

Extremely helpful member
Joined
Jul 2, 2014
Messages
3,457
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
City
Tampa
Steve has been stable and yes he is only on the trilogy and no oxygen. They really worked with him for length of breaths, time between breaths and of course pressures.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,251
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Happy to help, Cindy. At that height/weight, he could maybe do with more tidal volume but let's see first how he does with bigger breaths/less resistance. It would help if you could look at the AHI and periodic breathing stats on the info screen after he wakes up, and write those down, as well as the average IPAP/EPAP/PS.

In answer to your question, Larry lost half his lung volume pre-ALS due to Marfan syndrome and had many heart/eye surgeries that affected what we could do w/ BiPAP, so we left DME firms and pulmonology behind a long time ago, and I'm in health care professionally, anyway. As his needs evolved, we bought a variety of used machines, which I adjusted continuously.

But beyond the unique situation we had, more generally, I see the ALS (and muscular dystrophy, too) systems as adopting a "set it and forget it until someone asks" mentality that is, to me, leaving a lot of quality and probably quantity of life on the table. These are progressive disorders, amd machines can only do what you ask them to. So I try to encourage people to regard PAPs with the same mentality that you would a car, oven, TV, anything else -- each trip, each use, you want to have open eyes to set up what you need, see where you're going and how well it's working out.

Best,
Laurie
 

4tloml

Senior member
Joined
Sep 15, 2014
Messages
576
Reason
CALS
Diagnosis
04/2013
Country
US
State
CA
City
Suburban
Going upstairs to tuck my guy in. Will get those stats in the morning. Thank you so much for your help, Laurie. Thanks for sharing how you got to be expert--what a great CALS--doing whatever it took to provide your husband what he needed. It's more than kind that you stay now and help the rest of us.

Gooseberry, that's good news about Steve. Keeping fingers crossed these adjustments will do it for my guy, too. Feeling encouraged. Thanks!
 

Nuts

Forum Supporter
Extremely helpful member
Joined
Feb 23, 2014
Messages
2,536
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Laurie, I hope that you know how much your knowledge and advice is appreciated. I have a responsive RT, but because of you I call her the minute I think something needs tweeking. I probably would have been much more passive if not for this forum, and you in particular. I've also picked up an oximeter because of what I've read here--just so that I know what's going on. Thank you.
 

4tloml

Senior member
Joined
Sep 15, 2014
Messages
576
Reason
CALS
Diagnosis
04/2013
Country
US
State
CA
City
Suburban
So when I got upstairs to make the adjustments and tuck my husband in, I learned that it was set so that the only adjustment I could make was the Bi-Flex. The others settings have to be done by clinical staff. So frustrating.

So I called the clinic again this morning. Nothing. No one I can talk to, no one calling me back. I began emailing and calling last Wednesday. I'm just frustrated to tears. UC Davis clinic just sucks--almost as badly as ALS! It's too bad we like Dr. Joyce there so much, cause it looks like we'll be moving on now that my PALS is on Medicare and we have a choice. I've never used that clinic's name before, but if we're going to help one another here, I'd sure advise not getting started there. (Sorry Mods, just had to say it.)

The only person who has been responsive is our person from Supercare. She is awesome! So she and I have made a plan for him to begin using his Trilogy at night and she's going to call in the morning to see what his sats were during the night and we'll adjust from there.

If we can't adjust the Respironics (night machine from a different company), they won't adjust it for me because they have to wait for a doc's order, but we can't get the doc to order it, then it's doing more harm than good. They can take it and put it where the sun doesn't shine!

Rant over. Sorry. It's been building awhile. :(
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,251
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
That's very nice to hear, Becky -- thank you.
--Laurie
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,251
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
In light of Cindy's last post, I just want to clarify that it does not take an RT to get into the clinical settings -- just knowing how, as she now does. That is a myth that has more dollars than common sense behind it.

Anyone that needs the quick start guide for their machine (tell me which one you have) and/or the clinician manual, let me know, and as I have done for others, I'm happy to suggest settings that might work better, because you don't want to just start pushing buttons. There is always a plan. You can do everything the RT does with your machine, and you have far better information with which to do so.

Best,
Laurie
 
Status
Not open for further replies.
Top