Calling On the Experts -- Muffy Too Please (LONG)

Sorry to hear of all your struggles. I can not help much but did want to add that I have Asthma, and have inhalers also. I have found for some people inhalers do not work very well due to having to time the inhale and puff all at the same time. I use a nebulizer with the same meds as my inhaler and have found this method works much better and for a longer period of time. Just something you might want to look into. I use Albuterol in mine, and it's a really cheap medication, much cheaper than the copays on my inhalers LOL

edited to add: Both my inhalers are Albuterol but for some reason they are like 15$ in copays where Albuterol solution for the nebulizer is like a 2$ copay

TheTwinsMom1 wrote:Sorry to hear of all your struggles. I can not help much but did want to add that I have Asthma, and have inhalers also. I have found for some people inhalers do not work very well due to having to time the inhale and puff all at the same time. I use a nebulizer with the same meds as my inhaler and have found this method works much better and for a longer period of time. Just something you might want to look into. I use Albuterol in mine, and it's a really cheap medication, much cheaper than the copays on my inhalers LOL

edited to add: Both my inhalers are Albuterol but for some reason they are like 15$ in copays where Albuterol solution for the nebulizer is like a 2$ copay

I might look into this and ask my doc about it on the 21st. I'm not sure what my brand of inhaler is (proair??? or something like that -- I'd have to go look) but it costs me almost $40 each time I get it.

Yeah I can never understand why something so little can cost so much

TheTwinsMom1 wrote:Yeah I can never understand why something so little can cost so much

I looked at the box and the ProAir is albuterol. But I don't think my insurance covers inhalers, thus my paying almost $40 for each one.

Bump ... Waiting for -SWS and/or Muffy to respond

Thanks for that bump, John!

Madalot, I'm not an expert... But I'd like to have a careful read of your thread and respond this evening. See you then!

JohnBFisher wrote:Bump ... Waiting for -SWS and/or Muffy to respond

Thanks John -- I haven't seen any posts from -SWS in the last few days. I'm hoping he's okay.

I'm assuming that Muffy is not planning on responding. I respect his decision and will leave well enough alone.

I appreciate your attempt to get me more input -- it's very kind of you. I'll be okay.

-SWS wrote:Thanks for that bump, John!

Madalot, I'm not an expert... But I'd like to have a careful read of your thread and respond this evening. See you then!

This came in right as I was submitting my last post.

Thank you. While you may not feel you are an expert, I DO feel you are intelligent, knowledgeable and caring and would greatly appreciate any input and insight you might have. When you can. Thank you in advance.

Madalot wrote: Here are my current settings:

S/T AVAPS
Dual Prescription OFF
Mode S/T
AVAPS ON
Tidal Vol 400ml
IPAP Max Pressure 23.0 cm H20
IPAP Min Pressure 14.0 cm H20
EPAP 6.0
Breath Rate 7 BPM
Inspiratory Time 2.0 Seconds
Trigger Type Flow Trigger
Flow Trigger Sensitivty 4.0 l/min
Flow Cycle Sensitivity 20%
Rise Time 3
Ramp Length OFF

...Now -- I AM sleeping reasonably well and have found a slightly better energy level early in the day (later in the day I crash, but I was crashing ALL day before). I am still waking up a lot and know for certain (I've watched the vent monitor) that as soon as I start to really relax and fall asleep, my RR slows to 7-8 and the ventilator starts kicking up the pressure. The alarms are off now, but when they were on, the low tidal volume alarm would sound. My interpretation of this is that the ventilator takes a few seconds to get my volume back up, but it's not quick enough for the alarm not to sound.

Well, a measured RR of 7-8 accounts for complete breaths (I+E) between 7.5s and 8.6s each. When/if that happens your machine still has inspiratory time capped/limited to only 2.0s. That RR of 7-8 makes for an I:E ratio between 1:2.75 and 1:3.3 when I is machine-limited to 2.0s.

A normal I:E ratio is supposedly somewhere in the vicinity of 1:2. In cases of obstructive diseases such as COPD, the ventilator ratio typically needs to favor a higher E number than that 1:2 ratio. Conversely restrictive diseases such as neuromuscular typically need to favor longer inspiratory times---and thus an I:E ratio favoring longer I times than just 1:2. My understanding is that since obstructive diseases (eg. COPD) and restrictive diseases (eg. neuromuscular disease) are not mutually exclusive, some clinicians might rely on extensive PFT testing/analysis to help determine optimal I:E ratio settings on a ventilator. So I would be inclined to ask the doctor for a "complete PFT" (not just the basic spirometry PFT) toward that objective of clinically assessing an improved I:E ventilator ratio given your physiology.

Also, if the doctor is inclined to numerically assess your present treatment as "suitable" without factoring sleep quality, then remind her that your best pulmonary and AHI numbers happen when you lie there awake all night. Sleep quality really needs to be factored in. Additionally, if the doctor happens to view that both oximetry numbers and the ventilator's resident data set are sufficient to assess your current efficacy, then politely ask her why those same benchmarks aren't also suitable toward monitoring efficacy as you two endeavor less-disrupted sleep----perhaps via a longer "Inspiratory Time" setting to better accommodate neuromuscular restrictive disease.

Madalot, good luck with your doctor visit on the 21st!

-SWS wrote:
Madalot, good luck with your doctor visit on the 21st!

-SWS --

Thank you SO MUCH for taking the time to read my information and post your opinion. I really do appreciate your taking this time and giving of yourself.

I am going to print your post and review it carefully to be sure I understand everything you've said. The ventilator lists the I:E ratio and I now realize I need to be looking at that a little more carefully. So much of this stuff is complicated and not the easiest to comprehend. I want to make sure that I understand this so I can discuss it with my doctor.

I got an email from my DME yesterday and they have received the order for the ventilator download and plan to do it on Monday. That will give my doctor plenty of time to review it before my appointment on Friday.

Thank you again for the information and help.

Madalot wrote: The ventilator lists the I:E ratio and I now realize I need to be looking at that a little more carefully.

Okay, Madalot. But be careful if that listed I:E ratio is only an overnight average. Why? Because this recurring problem scenario---while running BiLevel or AVAPS in S/T mode---can become numerically diluted in overly-coarse nightly I:E averages:

a measured RR of 7-8 accounts for complete breaths (I+E) between 7.5s and 8.6s each. When/if that happens your machine still has inspiratory time capped/limited to only 2.0s. That RR of 7-8 makes for an I:E ratio between 1:2.75 and 1:3.3 when I is machine-limited to 2.0s.

The above RR=7-to-8 scenario can be recurring enough to repeatedly bother your breathing and sleep----and yet so proportionally infrequent as to get numerically diluted in nightly averages...

So I think it's advantageous to numerically analyze salient or recurring S/T mode problem areas, as above, rather than focusing almost exclusively on nightly averages. Again, good luck, Madalot!

-SWS

I went to bed earlier than usual last night and laid with my head towards the vent so I could watch what was happening. The I:E Ratio changed pretty consistently. At one point, it got to 1:9.0, but it didn't stay there. It typically was 1:1 - 1:3 most of the time I was watching.

As I've mentioned, I am certain that once I really relax and head to sleep, RR drops to 8-9 and I've seen it as low as 7, which I assume won't go below that since the ventilator has a breath rate of 7 so it will force a breath on me.

I don't know -- this is all so complicated. I'm having trouble wrapping my mind around any of it today.

I'll mention all of this to my doctor on the 21st. I feel I'm handicapped at the moment since my DME lost their RT. I wish there was an easier way to get this all figured out.

Madalot wrote:RR drops to 8-9 and I've seen it as low as 7, which I assume won't go below that since the ventilator has a breath rate of 7 so it will force a breath on me.

Agreed that an S/T backup rate of 7 should keep your RR at 7 or higher. Let's calculate a range of I:E ratios for RR=8-to-9 when "Inspiratory Time" is capped or limited at 2.0s:

Total breaths (I+E) are 6.67s @RR=9; and 7.50s @RR=8
"Inspiratory Time" is still capped or limited @2.0s
Expiratory Time will be 6.67s minus that 2.0s@RR=9; and 7.50s minus that 2.0s@RR=8---so "E" will be 4.67s and 5.50s respectively (lengthy post-expiratory pauses can conceivably skew that---in which case increasing backup rate might be worth consideration)
=====================================================================================================
When I:E ratio is limited by Ti=2.0s, the I:E ratios are also limited at 2:4.67 and 2:5.50 for RR@9 and 8 respectively
The above I:E ratios can be reduced to 1:2.34 and 1:2.75 for RR@9 and 8 respectively (those I:E results favor expiration)




___________________________________________________________

Again, normal I:E ratios supposedly run in the 1:2 range. I:E ratios for neuromuscular restrictive disease supposedly need to favor more inspiratory time than that 1:2 ratio. When your RR dips down to 7, 8, or 9 AND your Ti or "Inspiratory Time" is capped or limited at 2.0s, then your I:E ratios end up favoring E rather than I. That's fine for obstructive disease, but opposite the usual recommendation for restrictive disease.

A short or machine-limited inspiratory cycle can reduce tidal volumes without either biological or machine peak-volume compensation (manually increased PS in that latter case). And with reduced tidal volumes at reduced breath rates you can conceivably experience hypoventilation----hence the alarms going off when your breath rate slows down. My point is that you and your doctor might find better settings to accommodate those recurring problem spots when your RR slows down. And the first thing I would suggest to my own doctor if I had neuromuscular restrictive disease is that we experimentally lengthen Ti to better accommodate my restrictive disease. Pending those results, PS and other vent parameters might require adjustment as well. Backup rate might require an increase in your case---to better accommodate an intermittently reduced/latent respiratory drive.

Unfortunately, without a skilled RT or pulmo in the loop, experimental machine changes are unlikely. You just might have to sit tight until your DME hires a suitable RT. On the bright side, your current machine modality and settings are a vast improvement compared to your initial CPAP setup IMO.

-SWS wrote: A short or machine-limited inspiratory cycle can reduce tidal volumes without either biological or machine peak-volume compensation (manually increased PS in that latter case). And with reduced tidal volumes at reduced breath rates you can get hypoventilation----hence the alarms going off when your breath rate slows down that way. My point is that you and your doctor might find better settings to accommodate those recurring problem spots when your RR slows down. And the first thing I would suggest to my own doctor if I had neuromuscular restrictive disease is that we experimentally lengthen Ti to better accommodate my restrictive disease. Pending those results, PS and other vent parameters might require adjustment as well.

Unfortunately, without a skilled RT or pulmo in the loop, experimental machine changes are unlikely. You just might have to sit tight until your DME hires a suitable RT. On the bright side, your current machine modality and settings are a vast improvement compared to your initial CPAP setup.

Again, thank you -SWS, for taking the time to give me this information. I also wish to express my gratitude for doing a good job in relaying this information in a simple fashion (layman's terms) to make it easier for me to grasp.

I also appreciate your trying to explain to me why the alarms keep going off. The DME was pretty insistent that the alarms be turned off, which doesn't make a lot of sense to me. I have to agree with something Muffy said a while back -- this extremely expensive piece of equipment and we're NOT using the alarms -- seems a little stupid to me. I think I WILL have access to a skilled RT soon, but they are still working on getting her up to speed on their patients and the specific ventilator they use (she's a hospital RT and isn't familiar with the specific ventilator). I've been promised a face-to-face with her as soon as possible, but no timeline was given.

As far as my doctor is concerned, she is definitely a pulmonary specialist and based on what both my neurologists have said, she is the absolute best in the area. They both have said that they feel very comfortable with her treating my respiratory issues. However, they also agree that she isn't the most "forthcoming" when it comes to educating her patients on what she's doing and why. She'll answer questions happily, but you have to know exactly what to ask her -- if that makes sense.

What I might do is print out what you've said here and send it to her (without any specific information about where it came from -- don't want her coming after anybody here!!) and see what she says.

I think one of my biggest frustrations is that I still feel very, very sleepy in the afternoons. Actually, I never used to nap much until I started treatment, but now I nap probably 5 days out of 7. What's weird is that I only sleep for 10-20 minutes and then I feel better. And if I have that sleepy feeling and don't nap in the afternoon (for whatever reason), I'll get that nap in the evening in my recliner. Last night, I dozed off at 7:45 and woke up at 8:00 (phone woke me up).

While I was always tired during the day, I never felt like I just could not stay awake and now that exactly what happens. I'm wondering if it's possible that we've taken my breathing issues and in the process of trying to solve them, have actually caused something that wasn't really a problem before --

Madalot wrote:While I was always tired during the day, I never felt like I just could not stay awake and now that exactly what happens.

That might also be attributable to NMD progression...

I'm wondering if it's possible that we've taken my breathing issues and in the process of trying to solve them, have actually caused something that wasn't really a problem before --

It's entirely possible IMO. However, if your SpO2 desaturations are improved with the vent, then the vent is probably necessary. In that case the current goals IMO should be to diligently optimize vent settings and find methods to improve sleep despite the cumbersome machine.