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

-SWS wrote:

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...

This is probably true. It's hard to know. I'm about half sick to death of desperately needing to sleep every day, plus when I first wake up, my double vision is terrible for another 5-10 minutes afterwards.

-SWS wrote:

Madalot wrote: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.

My oxygen desaturations are greatly improved on the vent. Like I said -- I spot check using my monitor a couple times a week and while I still drop into the 80's, I usually don't stay there for any length of time.

When I first found out that my RT was gone AND had gotten information on what the vent is going to end up costing me every month, I asked my doctor if she would ever consider switching me to a different machine like some others here are using. She said No, this ventilator would be the machine I would be staying with.

And being totally honest, both of my neurologists are extremely well respected specialists in their field (two different university hospitals) and both have told me numerous times that my pulmo doc is THE best I could get. I feel I need to trust that she knows what she's doing, but it's up to me to let her know what's happening that she can't see on the pulse ox or vent downloads.

-SWS,

I wanted to again express my gratitude to you for the advice you have given me in this thread. I am planning on collating it into an organized document and discuss it with my doctor on the 21st. I'm not sure how she'll respond, but I think you are right that while I am technically being treated effectively, there is still room for fine tuning the settings to make it better for me, both treatment and comfort wise.

I think the fact that I can't use the alarms at this point should be enough to prove that we still don't have optimum settings.

Thank you for helping me when I asked for it. It means a lot to me. I'll update after my appointment.

You're very welcome, Madalot!

Madalot wrote:I'll update after my appointment.

Good luck with that appointment. There are plenty of us pulling for you...

-SWS wrote: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, ...other vent parameters might require adjustment as well.

Such as, increasing Rise Time

-SWS wrote:You're very welcome, Madalot!

Madalot wrote:I'll update after my appointment.

Good luck with that appointment. There are plenty of us pulling for you...

Thank you (and all the others that have been following my situation).

I sometimes get very down and depressed about all of this. And there isn't anybody IRL that understands any of this, or gets it enough, that I can really relate to on it. Plus, aside from the people here, there doesn't seem to be anyone that I can talk to about what's happening and what it might mean.

I had a very rough night last night for no reason that I can explain or understand. I found myself having serious difficulty breathing with the vent when trying to fall asleep. I had to concentrate and try to breathe in sync with the vent. Then I had one of my horrendous night terrors and found myself flying out of the bed (no easy task for me) and borderline hysterical over something -- I have no idea what. Even after I had calmed down, the vent was still pushing the pressure at close to 16 (my regular pressure is 14) and it took 2-3 minutes for it to drop back down to normal.

I honestly feel like that no matter what we do -- no matter what we do to the settings, nothing is going to help me for any significant length of time.

Sorry -- I'm just kind of blah about all of this today.

Banned wrote:

-SWS wrote: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, ...other vent parameters might require adjustment as well.

Such as, increasing Rise Time

I think there are a whole lot of settings that could use a little more scrutiny -- including Rise Time. My plan is to have all the settings written down when I see my doctor and discuss the feasibility of adjusting some of them. Or at least, get her permission for me to do a little "dial wingin'" within boundaries that she is comfortable with.

This is where having access to a knowledgeable RT would be helpful. And since I don't really have that, I was hoping to jump back in here to try to get more input.

And I truly appreciate those that have been willing to jump back onboard with me on this.

Kathy,

I am glad you got some advice. Please let us know how your doctor's appt on the 21st goes.
Thinking of you,

Jeanette

newhosehead wrote:Kathy,

I am glad you got some advice. Please let us know how your doctor's appt on the 21st goes.
Thinking of you,

Jeanette

Thank you, Jeanette. Very much appreciated.

I'm very interested in the download from the vent, which I'm having done on Monday. If I can convince them to print out a copy for me (my last one that was only a couple weeks worth was close to 50 pages so I can only imagine how long this one will be), it might give some insight as to how I'm really doing.

I'll keep updating when I can. I appreciate the support.