Ventilator - Status (Update)

[Madalot]

Anyone following my threads knows that I am tired and frustrated with my ventilator settings. My doctor has given me permission to try different things and trusts me to be careful with what I've done. The problem is that we have done so much over the last 14 or 15 months and I simply do not know what has worked and what has not or which settings make me feel better or sleep better.

I proposed to my doctor that maybe we needed to start over at square one. Since she knows I have a recording pulse ox monitor (and use it) and that I have access to the ventilator data (and watch it), she has not only approved, but agreed that at this point, it seems a smart course of action.

I have promised to keep a detailed journal of nightly settings, sleep quality and daytime fatigue issues AND watch the data regularly.

I am going back to basic bipap s/t settings and move upward from there as necessary. I have also agreed to keep my AVAPS settings on the Secondary Prescription so that if something goes wrong on lesser settings, I can easily switch to the settings that we know will keep my breathing & oxygen levels at acceptable levels.

So...I'm going back to basics now. Anyone that has any input or suggestions, I welcome it.

[Robespierre]

Good luck, Maddy. Sometimes you really do have to just strart over. With your detailed journal to hep you keep track, i hope you find a viable solution. I'll be thinking of you and watching for results.

[DoriC]

I'll be watching this thread with fingers crossed . Now that you have permission to start over and keep your own journal I'm hoping you will find your own answers to this puzzle. It seems nobody else has any answers for you. I hope your Dr hasn't given up but I guess it's a compliment to you that she has given you free rein to experiment, I wonder if she's ever done that before? Good luck.

[jbn3boys]

Sounds like a good plan, Maddie. I pray for good results for you.

jbn

[rosacer]

Hey, that's an excellent idea, seriously. I wish you big success Maddy.

Rosie

[Madalot]

First Night Report -- Setting Bipap S/T, 13/9, Rate 7, other settings maintained, 2L Oyxgen

Not too bad, all things considered. Overnight pulse ox good, no desats, lowest oxygen level 92%. Ventilator download is fairly consistent with those on AVAPS settings. Breathing rate increased slightly, which is something my doctor asked me about, saying that can happen with lower ipap???

Patient Triggered breaths about the same -- 99.18%, which isn't horrible, but indicates to me that I definitely need the backup rate.

Woke up early (for me) unable to go back to sleep. I feel okay, but not fantastic. Will have to see if the afternoon "sleepies" get me like they have been doing.

Overall -- not too shabby.

Insurance/Ventilator Update: The new DME seems unable (or unwilling) to get me firm answers about the status of this (own/rent/own/rent) so I contacted my insurance myself and within 5 days got a firm, 100% reply:

I have the OPTION of saying I have purchased the equipment or not, but either way, the insurance (and I) are done paying for it. No more rental fees as the insurance has PURCHASED it. If I want it, it's mine and the DME must surrender the title for it (TITLE??? Who knew???). If not, the DME will maintain ownership. DME is allowed to bill the insurance for services for me, but no more payments on the Ventilator.

Now, if I could just get the damned thing (MINE) back -- all nicely serviced and upgraded -- I think I'll request the title to it. Seems stupid NOT to take ownership of it.

[BleepingBeauty]

First Night Report -- Setting Bipap S/T, 13/9, Rate 7, other settings maintained, 2L Oyxgen

Not too bad, all things considered. Overnight pulse ox good, no desats, lowest oxygen level 92%. Ventilator download is fairly consistent with those on AVAPS settings. Breathing rate increased slightly, which is something my doctor asked me about, saying that can happen with lower ipap???

Patient Triggered breaths about the same -- 99.18%, which isn't horrible, but indicates to me that I definitely need the backup rate.

Woke up early (for me) unable to go back to sleep. I feel okay, but not fantastic. Will have to see if the afternoon "sleepies" get me like they have been doing.

Overall -- not too shabby.

I hope you feel a difference later in the day. But feeling "okay, but not fantastic" this morning is pretty good, after just one night at the new settings. Are you aware of less awakenings last night, or about the same as before?

Insurance/Ventilator Update: The new DME seems unable (or unwilling) to get me firm answers about the status of this (own/rent/own/rent) so I contacted my insurance myself and within 5 days got a firm, 100% reply:

I have the OPTION of saying I have purchased the equipment or not, but either way, the insurance (and I) are done paying for it. No more rental fees as the insurance has PURCHASED it. If I want it, it's mine and the DME must surrender the title for it (TITLE??? Who knew???). If not, the DME will maintain ownership. DME is allowed to bill the insurance for services for me, but no more payments on the Ventilator.

Now, if I could just get the damned thing (MINE) back -- all nicely serviced and upgraded -- I think I'll request the title to it. Seems stupid NOT to take ownership of it.

My only question about who actually owns the vent (if/when you ever get yours back ): If you own it outright and it needs servicing down the road, would you be on the hook for that, cost-wise? If the DME retains ownership and they have to eat any associated costs of repair, let them keep the title.

[HoseCrusher]

Ah ha, back to the basics. I love it.

[robysue]

Back to the basics and keeping careful tabs on what "works how well" while keeping that current official prescription easily accessible does seem like a good idea. And I'm glad to hear the first night went well. And we all would love to see you quickly find a set of settings that allows you to sleep well during the night and avoid those nasty sleepies during the day.

My questions: How/when will you decide it's time to try something new? Obviously if a particular setting is an abysmal failure in terms of the O2 data, etc. the decision will be easy. But do you have other criteria? And how long do you plan on staying with a "decent enough" set of settings before trying to find a better set?

[Madalot]

My questions: How/when will you decide it's time to try something new? Obviously if a particular setting is an abysmal failure in terms of the O2 data, etc. the decision will be easy. But do you have other criteria? And how long do you plan on staying with a "decent enough" set of settings before trying to find a better set?

From a therapy standpoint, I need to monitor my ventilator downloads AND oxygen levels. As long as my oxygen level stays above 90%, I think that's good. As far as the ventilator downloads, I have asked my doctor to provide me with guidelines as to what SHE wants. As long as I am within those parameters, I am okay. If anyone is interested, I'll post the guidelines she set.

I also need to monitor how well I sleep, how I feel during the day and how fatigued I seem to feel.

All of these things needs to be considered when deciding whether to stick with settings or tweak them.

My plan is to continue with the basic settings from night #1, watching the downloads and being very aware of how how I feel.

Nothing more I can really do but "wing it" and hope I'm doing the right thing.

[DoriC]

Could it be possible that you woke earlier than usual because you had a better quality of sleep and didn't require more? Wouldn't that be great! How was naptime today? If things stay "OK" although not fantastic", how long do you anticipate staying at these settings before trying a new one? In "our world" we usually give new settings a week unless things go really horrible. I for one would be interested in your Dr's guidelines.

[Madalot]

Could it be possible that you woke earlier than usual because you had a better quality of sleep and didn't require more? Wouldn't that be great! How was naptime today? If things stay "OK" although not fantastic", how long do you anticipate staying at these settings before trying a new one? In "our world" we usually give new settings a week unless things go really horrible. I for one would be interested in your Dr's guidelines.

If today is any indication, no. I could barely get out of bed this morning. I feel horrible. Headache...tired...just awful.

I'll mark my journal...

As far as what my doctor said, I'll copy & paste what I said to her and her response...

ME:
These are last night's AVERAGES, which are similar to what they have been on AVAPS. The vent was set as bipap s/t, 13/9, backup rate 7. The Breaths per minute has increased from an average of 13.5 (roughly) to this.

Breaths Per Minute: 15.34
IPAP/EPAP: 13.05/8.95
Leak: 37.37
Minute Ventilation: 5.9
Patient Triggered Breaths: 99.18
Peak Flow: 26.97
Ti/Tot %: 29.25
Vte: 382.32

RESPONSE:
I would like to see the RR between 12 and 18, The Minute ventilation should be more than 4,( the 5.9 is right where it should be ) Vte is a little low would prefer 400-450 range, but 380 is probalby ok as well since MV and rate are within range.

[Madalot]

I did two nights on basic bipap settings. First night wasn't too bad, but the second night resulted in feeling horrible the next day.

I went to bed last night and tried to leave the settings the same for a third night, but laying there, I was having trouble breathing. It was becoming distressing, so I switched the settings back to the AVAPS (as I promised my doctor & RT I would do) and IMMEDIATELY felt relief. It was like -- OMG I can breathe now. The ventilator was pushing maximum pressure for about 5 minutes or so and it was SO much better for me to breathe. I dozed off, but woke up and the machine was doing a very gentle 13-14 at that point.

Download looks fairly good, consistent with the previous downloads at the maximum ipap of 16 (tidal volume is still a bit low, but okay based RR & Min Vent per my doctor).

I'm not sure what I need to do, but I AM keeping a written journal AND printing out the downloads and looking for patterns.

[robysue]

I'm not sure what I need to do, but I AM keeping a written journal AND printing out the downloads and looking for patterns.

You need to keep gathering the data you need to sort out what you really need to do in the long run.

Frustrating? Yes, but useful in the long term.

All the best

[Madalot]

I'm not sure what I need to do, but I AM keeping a written journal AND printing out the downloads and looking for patterns.

You need to keep gathering the data you need to sort out what you really need to do in the long run.

Frustrating? Yes, but useful in the long term.

All the best

Thank you. The first 10-15 minutes last night was stressful and scary (thus switching back to AVAPS) and the immediate relief I felt IS a piece to this puzzle.

I wrote my doctor and RT, telling them what happened last night and asking if they had any suggestions for what to try next.

There is NO way I can deal with not being able to breathe, so I'm not anxious to do that again, but if I don't get any suggestions, what I *MIGHT* do is go back to basic bipap, but bump up the IPAP to 14 or 15. The problem with that is that 13 is good for me at some points, but not good enough at others. AVAPS has the range of inhale pressures, but...

:::sigh::: no easy answers.