Madalot is Very Bad

[Madalot]

I am beginning to think that some of what we've done with the machines may be having a more negative impact on my situation than originally thought. I'm holding out hope that the sleep study will have a "Eureka" moment and all will be right with the world.

Okay...I'm an optimist....what can I say???

I had a thought that while it makes it easier to breathe, the higher minimum IPAP (now at 16) may actually be making things worse. So, for last night, I dropped it back down to 13, which is the last prescribed pressure my doctor gave me (she approved the increases so she knows about them). I did NOT change the maximum or any other setting. Just the minimum.

At first, I guess my deeper breathing still pushed it to around 16, but as I relaxed more, it seemed lower (I didn't watch the display). When I got up this morning, it was around 12.8. Hmmm...

Unfortunately, this did not change the awakenings at all...I still woke up as much as ever...

I did NOT have trouble breathing at the lower pressure last night, but that could easily change. But we'll see.

And I did write to my doctor and RT and told them what I did...hopefully they won't be upset with me for this little experiment.

[mars]

Don't you mean Madalot is looking after herself, and taking responsibility for herself, as best she can

Well, that's what I thought you meant

cheers

Mars

[Madalot]

Don't you mean Madalot is looking after herself, and taking responsibility for herself, as best she can

Well, that's what I thought you meant

cheers

Mars

Yes, that's one way of looking at it, but....

Madalot made a promise to her DME, RT & Doctor that she would NOT make therapy-related changes without prior approval. But I figured that this change wasn't that radical and I'm borderline desperate to figure out these awakenings. And since the study has been postponed...

[Slinky]

Maddie, sometimes we just do what we gotta do. As long as you allow enough time between therapy setting changes to be sure to get a relatively accurate picture of the results ... hey ... we do what we gotta do.

[jbn3boys]

I do NOT think you are very bad! You are just trying, desperately, to find something to work for you.

Any ideas yet on when the sleep study might be rescheduled? Was it originally scheduled for tomorrow? (I'm so goofed up on times, it could have been two weeks ago!) I hope they get you in SOON!

In the mean time, I think you did just fine, and the fact that you told all your "staff" (DME, RT, Doc) what you did is good. Maybe given that your wake up pressure was so low, they will allow you to leave it as is until the study. Maybe with a few more nights at that setting, your body might adjust to it, and you will have less awakenings! (Yep, I'm an optimist, too!!)

Hang in there, my friend!
jbn

[archangle]

Never forget when dealing with medical "professionals":

1) You are the customer, they are selling services and goods to you.

2) The medical system is a cartel. They control access to a lot of items you may need. They are very determined to protect their monopoly.

3) If you do the wrong thing against their advice, you could get hurt.

4) If they give you the wrong advice and you follow it, you could get hurt.

5) If you fail to do the right thing because they tell you not to, you could get hurt.

6) If you fail to do the right thing even though they told you to, you could get hurt.

[JohnBFisher]

There's nothing wrong with trying things as long as you (a) give it time and (b) keep your doctor and RT in the loop.

Hopefully the sleep study will find why you are having the awakenings. More than the "mode" of the machine, I suspect the periodic awakenings are an issue in and of themselves. That is, it appears that if you could sleep soundly without awakening, you would feel better. So, why are you awakening. What you notice when you awaken and what causes the arousal may not be the same. Add to that the fact that during the sleep/wake transition you may go through some central apneas (and/or shallow breathing) that are not there in the first place. Your ventilator would react to those and that would be what you notice when you are awake. But it may NOT be what triggered the arousal.

Hope things improve for you soon.

[Madalot]

Well, based on the replies I got from my RT and Doctor (both received within a couple hours of sending my email to them), I did okay and they are not upset. My RT politely reminded me that I needed to bump it back up if I had any difficulty breathing.

Hopefully the sleep study will find why you are having the awakenings. More than the "mode" of the machine, I suspect the periodic awakenings are an issue in and of themselves. That is, it appears that if you could sleep soundly without awakening, you would feel better. So, why are you awakening. What you notice when you awaken and what causes the arousal may not be the same. Add to that the fact that during the sleep/wake transition you may go through some central apneas (and/or shallow breathing) that are not there in the first place. Your ventilator would react to those and that would be what you notice when you are awake. But it may NOT be what triggered the arousal.

My doctor agrees with this. She said after reviewing the ventilator download that she could see "something" happening, but did NOT believe it was the ventilator. This is why she is saying they need to do a sleep study and watch what is happening, real time, to figure out exactly why I am waking up so much.

I still can't help but wonder if I'm suffering from two problems -- OSA and Diaphragm Muscle Weakness and that effectively treating ONE leaves the other one out there for issues and problems. The Director of the Sleep Lab in as much said this -- it is possible we will not be able to find settings that treat both issues totally effectively.

But it ain't over until it's over and my RT and Doctor are NOT giving up yet. If they are willing to keep trying, I will cooperate to the best of my ability.

The sleep study isn't rescheduled yet. Originally, it was scheduled for LAST Tuesday, but postponed until the staff can get trained on the equipment. I was told they would call me when they were ready...

Thus why I decided to change my IPAP (downward) to see if it helped in any way. Apparently, both my RT & Doctor understand why I did that and are not upset about it.

[jbn3boys]

See, you are most definitely NOT very bad!!

[Madalot]

See, you are most definitely NOT very bad!!

Maybe not, but I don't like changing my therapy on my own, plus I made promises to everyone involved that I would not do it. That's why they left the ventilator in full access mode because I promised. At this point, though, I thought that making that change wouldn't be horrible, plus I DID tell them about it the next morning...

I'm still bad....

[DreamDiver]

See, you are most definitely NOT very bad!!

Maybe not, but I don't like changing my therapy on my own, plus I made promises to everyone involved that I would not do it. That's why they left the ventilator in full access mode because I promised. At this point, though, I thought that making that change wouldn't be horrible, plus I DID tell them about it the next morning...

I'm still bad....

Madalot,
Are you sure the sleep arousals are due to settings on your vent and not due to some other environmental factors? It seems to me you've been around the block with this machine and that you probably know more about it than most respiratory therapists. Are the changes you and your docs showing positive results? Are you absolutely sure you couldn't explore other additional reasons for wake-ups? Have you had any neurological studies done other than normal sleep studies with EEG?

[Madalot]

See, you are most definitely NOT very bad!!

Maybe not, but I don't like changing my therapy on my own, plus I made promises to everyone involved that I would not do it. That's why they left the ventilator in full access mode because I promised. At this point, though, I thought that making that change wouldn't be horrible, plus I DID tell them about it the next morning...

I'm still bad....

Madalot,
Are you sure the sleep arousals are due to settings on your vent and not due to some other environmental factors? It seems to me you've been around the block with this machine and that you probably know more about it than most respiratory therapists. Are the changes you and your docs showing positive results? Are you absolutely sure you couldn't explore other additional reasons for wake-ups? Have you had any neurological studies done other than normal sleep studies with EEG?

I'm not completely sure about anything. However, in the course of the last 10 years, I have had every neurological test known to man and still have a fairly thorough neuro workup yearly.

The only thing I do know is that I slept without the ventilator one night and did not wake up as much (or not AS awake) so I think the ventilator plays a part. What part, I don't know. I don't necessarily think the ventilator is waking me up as much as perhaps *I* am waking up due to the ventilator NOT doing something to prevent it...does that make sense?

I'm of the opinion that I expressed before -- I believe I have a serious diaphragm muscle weakness problem that causes me to stop breathing, but also believe I have OSA. Treating one (the muscle weakness) leaves the OSA semi untreated...

I think that's why the sleep study -- for them to see it for themselves...