Vent - What Doctor Decided

-SWS wrote:

Madalot wrote:We'll just have to wait and see what my RT & doctor think and decide.

Always, Madalot. Always.

The information I'm getting from all of you is absolutely priceless! At least when my RT and doctor talk about something, there's a good possibility that I'll have read about it here and at least not be totally clueless about what they're talking about.

There's a lot of things to discuss with them, based on the last dozen or so posts. I'll definitely update the board after they decide what (if anything) they're willing to try.

Madalot, I will add a thought in terms of adjustment to your vent. I've transitioned from nothing to CPAP to BiPAP and now to ASV. Each of those transitions took some adjustment. The ASV was perhaps the most frustrating.

Occassionally, I find I continue to struggle against my ASV unit. The ASV units (especially the VPAP Adapt SV unit) insists on a certain tidal volume. And when my breathing goes shallow .. or stops .. it insists that I should breathe. Now, unless the sudden increase in pressure occurs and it blows out the mask seal ... Well, I just don't notice the strong swings in pressure.

Though I still sometimes fight over who is in control, it is much less now than three months ago. I think it took me a full three months to stop fighting it. Mostly. Most nights I never notice it.

I know it's nowhere near the same thing. But from my own experience I think you may find using your vent will get easier as you adjust to using it.

JohnBFisher wrote:Madalot, I will add a thought in terms of adjustment to your vent. I've transitioned from nothing to CPAP to BiPAP and now to ASV. Each of those transitions took some adjustment. The ASV was perhaps the most frustrating.

I know it's nowhere near the same thing. But from my own experience I think you may find using your vent will get easier as you adjust to using it.

John -- I think you may be right here and I think this may be where my doctor is coming from as well. Because the "arguments" aren't constant, she may be thinking that it's just a matter of me adjusting. And I think because the overnight pulse ox tests are showing I'm doing pretty well on that front, she may not be too keen on messing with the settings but so much.

Thanks -- I think sometimes I forget that my body needs time to adjust to this new way of breathing at night.

Madalot wrote: Thanks -- I think sometimes I forget that my body needs time to adjust to this new way of breathing at night.

So you have plenty of time to digest and research the technical chatter in this thread, Madalot. And you have plenty of time to take John's advice and the earlier text I have highlighted in red related to adaptation or settling in...

At this point I'll take a comfortable seat as I continue to read and follow your updates. However, as Banned continues to present you with his wish list of favorite dial-winging changes, I will rest assured knowing that you are bound and determined to follow your doctor's and RT's decisions.

Madalot wrote:We'll just have to wait and see what my RT & doctor think and decide.

Wise woman... Good luck!

-SWS wrote:

Madalot wrote: Thanks -- I think sometimes I forget that my body needs time to adjust to this new way of breathing at night.

So you have plenty of time to digest and research the technical chatter in this thread, Madalot. And you have plenty of time to take John's advice and the earlier text I have highlighted in red related to adaptation or settling in...

At this point I'll take a comfortable seat as I continue to read and follow your updates. However, as Banned continues to present you with his wish list of favorite dial-winging changes, I will rest assured knowing that you are bound and determined to follow your doctor's and RT's decisions.

Madalot wrote:We'll just have to wait and see what my RT & doctor think and decide.

Wise woman...

I'm cool with that -- and thank you so, so much for all the input you've given me. I appreciate the input that everyone has given me.

I still haven't heard from my RT yet. I think what *I'd* like right now is permission to try a few things just to see if they are any better. But I know I'll need to pin down the "things" to try very specifically. And I also know they (my RT & doc) are concerned about me just making changes to the settings for fear of setting something up badly. The ventilator, set up incorrectly, could have a serious negative impact on my situation.

But, we'll see.

Madalot,
I also assume that your doctor and RT have experience with the rate of adjustment to a ventilator therapy. I was glad to read you oxygenation was good.
O.

ozij wrote:Madalot,
I also assume that your doctor and RT have experience with the rate of adjustment to a ventilator therapy. I was glad to read you oxygenation was good.
O.

I think my doctor, especially, is very well versed in ventilator therapy. She specializes in breathing issues involving disease, so I have a lot of confidence that she knows what she's doing.

And I think she's pretty happy with my oxygen level at this point. But I am still going to keep monitoring it myself with my own monitor.

Madalot, just to say I am following your 'adventure' with much interest. I continue to wish you the very best as you go forward with this new equipment. Change...I don't know about your brain but mine doesn't like change. When I change pressure even slightly or mask, I have to wait weeks to see if it's doing what I hoped it would...my brain just doesn't adapt quickly.

Muse-Inc wrote:Madalot, just to say I am following your 'adventure' with much interest. I continue to wish you the very best as you go forward with this new equipment. Change...I don't know about your brain but mine doesn't like change. When I change pressure even slightly or mask, I have to wait weeks to see if it's doing what I hoped it would...my brain just doesn't adapt quickly.

Yes, this is certainly an adventure of sorts! I think it's possible that I need more time to adjust, but I'm honestly beginning to believe that my condition is just so variable that the vent, at its current settings, doesn't allow for such radical differences in my breathing from night to night.

I was upset last night when I went to bed (just a family thing -- nothing too serious) but I was having horrible problems breathing with the thing. I was gasping at times and it was just terrible. Once I fell asleep, it seemed better, but that hour or so before I went to sleep was bad.

Madalot wrote:I'm honestly beginning to believe that my condition is just so variable that the vent, at its current settings, doesn't allow for such radical differences in my breathing from night to night.

I was upset last night when I went to bed (just a family thing -- nothing too serious) but I was having horrible problems breathing with the thing. I was gasping at times and it was just terrible. Once I fell asleep, it seemed better, but that hour or so before I went to sleep was bad.

Madalot, it sounds as if stress or anxiety can exacerbate breathing or patient/machine syncrony problems for you---at least during sleep onset.

Well, you probably remember my earlier post about stress and anxiety reduction material known as "mindfulness":

-SWS wrote:Madalot, I have no way of knowing just how much stress you must feel---only to say that under the circumstances I would feel a great amount of stress. However, I just started this series for chronic pain management and so far I am impressed:
http://www.amazon.com/Mindfulness-Begin ... 060&sr=8-3
The above techniques are very effectively used in both stress management and pain management clinics around the world. It might sound hokey at first, but it works for many people. Your local library might even have similar "mindfulness" material for loan. So far I love it.

I also recently discovered "mindfulness" relaxation material available as MP3 download from Amazon.com at reasonable prices. And there are even some free "mindfulness" offerings available at iTunes. Good luck with any path you might select toward both intentional relaxation and better breathing.
http://www.amazon.com/gp/search/ref=sr_ ... 1270644888

Thank you, -SWS -- for reminding me about the mindfulness information. I admit I haven't looked into it much, but will probably do so at some point.

I know some may find this hard to believe, but I really don't stress too much over my Muscular Dystrophy or the breathing issues associated with it. I'm actually fairly calm about the entire thing. My "mindset" when I put the mask on at night is that it's going to help me breath better and make me relax and fall asleep faster. And I know that usually within about 15 minutes of starting the ventilator/oxygen, I feel very relaxed and drowsy and ready to sleep.

Even way back in November when I first started all of this with the cpap, I expressed to my RT and doctor how much I LOVED the feeling of the air. I found it comforting and relaxing -- and I still do.

Yes, last night I was very upset and stressed and I could definitely tell that made things worse. But even on some nights when I'm perfectly happy, relaxed and calm, there are issues at times.

And I think I need to start trying to keep track of it to figure out exactly what the problem is. And that's what I'm going to try to do. Keep a log of each day/night, any "arguments" with the vent, if I can determine whether it was an inhale or exhale problem, how my oxygen levels were, etc.

Madalot, you may well be beyond this point, but as you are well aware, you have been forced onto the path of learning to live with a progressive chronic illness. It's never an easy path. However, I did find the following book helpful to learn to understand how I feel about it and better understand the feelings of those around me:

http://www.amazon.com/Delicate-Balance- ... 738203238/

Your episode of family stress is what made me think of it. As you well know, physical and emotional stress impacts how our bodies react and this is especially true with someone with a chronic illness. Of course, managing stress is easier said than done.

I can highly recommend this book for anyone dealing with a chronic illness. It helped me better understand the process and how to try to find that delicate balance.

Madalot wrote:... And I think I need to start trying to keep track of it to figure out exactly what the problem is. And that's what I'm going to try to do. Keep a log of each day/night, any "arguments" with the vent, if I can determine whether it was an inhale or exhale problem, how my oxygen levels were, etc. ...

As you know I'm trying to figure out how to monitor and correlate different symptoms with my sleep. It's easy to make a comprehensive list. But then it gets to be so cumbersome you tend not to do it. At least that's my problem. I find that in my situation I often dread sleep. Other nights, I don't. Nor do I consciously know what the trigger is for one versus the other. I am trying to sort out what the subconscious trigger might be.

But by careful observation, I've discovered my dread of sleep does not always predict poor sleep.

So, when I put together my list, I'll share it here and explain what and why I am tracking. Though you have a different situation, my "thinking out loud" might help you as well as others.

JohnBFisher wrote:Madalot, you may well be beyond this point, but as you are well aware, you have been forced onto the path of learning to live with a progressive chronic illness. It's never an easy path. However, I did find the following book helpful to learn to understand how I feel about it and better understand the feelings of those around me:

http://www.amazon.com/Delicate-Balance- ... 738203238/

Your episode of family stress is what made me think of it. As you well know, physical and emotional stress impacts how our bodies react and this is especially true with someone with a chronic illness. Of course, managing stress is easier said than done.

So, when I put together my list, I'll share it here and explain what and why I am tracking. Though you have a different situation, my "thinking out loud" might help you as well as others.

When I'm stressed or upset, I definitely feel a huge difference. I try not to let things get to me too badly, but there are times that I just can't help it.

"Thinking out loud" may very well help others of us!! Sounds good to me. Thanks.