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jnk wrote:

Madalot wrote: . . . what the RIGHT answer is. . . .

Either choice has some "rightness" about it. If you can, you may want to try to think of it as a win/win choice, not a lose/lose choice, since you can make either choice work, and no one can expect you to see the future, after all.

What about your statement earlier in the thread about "slightly more trouble with daytime breathing since I've been on the ASV"? Is that attributable to the oncoming cold symptoms?

In my opinion, for me anyway, daytime comfort is more important than nighttime comfort. And no one can compare the daytime-comfort effect of a possible machine change and fight a cold at the same time. A cold would be a valid reason to delay, or extend, the trial, I would think, if that is possible.

I agree that this cold couldn't have worse timing. My doctor feels the cold IS responsible for the daytime breathing issues, but I wasn't having cold symptoms when that was happening. But, I don't know. Maybe the "pre-cold" crap was causing it.

When I got up this morning, my mask was leaking and the ASV was 18.3 over 11.2. But is it the cold that is making it do that or is that what I need on a regular basis?

I wish somebody -- husband, doctor, DME -- would tell me what THEY think I should do, but nobody is saying squat. Just "whatever you decide is fine" -- which I know it has to be up to me, but I just do not know. It's such a tough decision - and a big one.

And having a stupid cold right now is not what I need. All I want to do is curl up and sleep and NOT worry about something as significant as this.

Madalot wrote:....And having a stupid cold right now is not what I need. All I want to do is curl up and sleep and NOT worry about something as significant as this.

I think you SHOULD curl up and sleep for a few days, and NOT worry about this right now. You have the okay from the DME to keep the machine for a few more days. Maybe you need to rest and recover before you make that final decision. We all know we don't make the best decisions when we are sick, and this is too big of a decision to make right now.

Sometimes our brains work best when we are not consciously thinking about a situation or decision that needs to be made. I actually came up with a great solution this last weekend in the middle of the night. I did not go to bed thinking of this situation, but my brain still worked it out during the night. Maybe your brain will work out this solution while you are sleeping, too! (We can hope, can't we??)

Since you asked for some advice:

1) Because there are questions concerning what the insurance company will do if you decide to back off to the ASV now and then need to go back to the Trilogy later, it is worth calling the insurance company instead of just asking the DME and the doc about this issue. Insist on talking to a case manager of some sort rather than just the person who answers the call. Also be sure to get the full name of the person you are speaking to and inform them that you know the questions you are asking are difficult ones, but that you really need some answers from them concerning your coverage.

2) Take full advantage of the extended trial period. And I second Jbn3boys's advice of sleep, sleep, sleep during the cold. But I think I would track the cold symptoms closely in the sense of writing down a short misery index each day: How clogged is the head? How tired and achy is the body? How miserable with that "sick cat feeling" were you today? Don't tie any of these answers directly to which machine you sleep with. Just track how miserable the cold is as a cold. Once the answers to the cold misery index start to decline, you'll know that you're in a better position of starting to think more critically about the decision.

3) Once you start feeling better, then start doing the critical thinking concerning "daytime comfort" and "nighttime comfort." Because that "daytime comfort" vs "nighttime comfort" issue is a significant one and it has no one right answer. And that's why the doc doesn't want to make this decision for you. Weigh this issue carefully and keep notes if you need to. Among other things you need to track are the relative differences in comfort levels. In other words, has the daytime comfort decreased more than the nighttime comfort has improved?

4) It sounds like you've confirmed one suspicion that you were talking about a lot a year or so ago: That one of your problems with getting less fragmented sleep with the Trilogy is that it takes so darn long to reduce the pressure once you've woken up with it blowing full speed at you. The fact that the ASV backs the pressure off more quickly when you start breathing on your own is likely an important part of why your night time comfort seems to be better. Does the ASV also have a ramp button? If so, judicious use of the ramp, including making sure the ramp settings are high enough, might also help deal with that old problem of waking up to super high pressures and not being comfortable enough to get back to sleep. Because if I recall correctly, ramping was not easily done with the Trilogy.

5) Once you finally do make the decision, try very hard to force yourself to NOT second guess the decision. Embrace the decision and the power that making the decision gives you and focus on the positives that the decision entails for your situation instead of the negatives. And resist the temptation to question whether every problem and setback you have with the equipment you finally choose would or could have been avoided had you chosen the other machine. When faced with a difficult decision that has no clear answer, the would of, could of, should of game of going back over the decision again and again does nothing but make the decider miserable.

Keeping you in my prayers,
RobySue

Robysue,

Thanks for this. I agree with everything you've said.

I'll get back on this situation as soon as I can. But I did want to thank you (and everyone else) that has posted comments and questions. ALL of it is helping me towards making a final decision - and I am grateful to all of you.

Taco puppy says go with the ASV.

Archangle says maybe you should take the chance. Just realize if it doesn't work out, and you do go back to Trilogy, it may be a major pain with the insurance. You pays your money, you takes your chances.

It sounds like you have two choices and no one is clearly better. Agonizing over it longer won't necessarily make you make a better choice.

Do you have enough experience with the ASV to feel sure it's not going to be enormously worse than the ventilator?

Can you ask your doctor: "If I walked in here as a new patient, with my present medical condition, what would be the best machine for my situation?" Would you get a straight answer? It gets really complicated when you think of all the past decisions and possible wrong turns along the way. I'm hoping for the best for you!!

Sorry I didn't reply to posts yesterday - we ended up putting my daughter's horse down and obviously it was very stressful and emotional around here all day and last night.

I emailed my doctor asking her if she had a preference in machine and have requested a phone conversation with my RT to discuss all the issues.

I slept yesterday afternoon (ASV) and the mask situation was horrible, most likely from the humidity. My face WAS wet and the mask was sliding all over the place, making all these stupid leaking sounds. Same thing happened last night, waking me up over and over again.

As much as I enjoy the humidity, it's not worth this aggravation.

My plan right now is to use the Trilogy tonight and see if the mask issues stop and how I sleep.

One way or another, I must make a decision in the next day or so -- and stick with it.

Madalot, like others here I'm reading your thread with fingers crossed and dare I say high hopes. I'd like to toss in a pair of interrelated considerations...

xPAP machines employ narrow, running baselines with which to score apneas and hypopneas. That narrow scoring baseline means that gradually diminishing flow and/or sustained hypoventilation will often not be scored as an apnea or hypopnea event. So when you’re evaluating the ASV’s efficacy for your condition, scored AHI and high-level graphs reflecting the entire night might not suffice.

Anyone at risk for hypoventilation should probably also evaluate low-flow periods at a finer graph resolution----looking for gradually diminishing flow problems that would fail to score as A or H (again, fail to score based on that narrow running baseline used for scoring). I would thus suggest microanalyzing ASV flow graphs during time periods of low minute volumes, as well as time periods of low SpO2 measured with your pulse oximeter.

The second interrelated point has more to do with ASV treatment rather than scoring. But once again the concern has to do with narrow running ASV baselines versus hypoventilation tendencies. The Respironics ASV employs a four-minute running baseline with which to target flow. That four-minute recent average of flow----used to formulate a running flow target---can theoretically be lowered by resistant or unresponsive hypoventilation. I’ll outline that theoretical risk in the six-step scenario below.

Hypoventilation Skewing ASV Flow Target (a theoretical concern):
1) Normal patient breathing
2) ASV uses 4-minute recent average of normal flow to flow-target subsequent apnea & hypopnea treatment
3) Patient begins sustained & unresponsive hypoventilation
4) ASV initially employs acceptable 4-minute recent average to target flow
5) Patient continues to hypoventilate for more than 4 minutes
6) 4-minute recent average of hypoventilation becomes the ASV machine’s new and unacceptably low flow target

That last concern in step 6 becomes compounded by the fact that ASV machines are designed to target less than 100% of recent-averaged flow. That less-than-100% flow target is intended as a backup measure to treat short-duration apneas and hypopneas---but not sustained hypoventilation.

So in summary, I suggest a little bit of microanalysis of your flow data. Look at flow graphs during low minute volume periods and during low SpO2 periods as well. I’d suggest examining flow graphs at a graph scale of say one-minute resolution.

Okay, good luck, Madalot! My fingers are still crossed!

-SWS,

Is that similar to what this source is getting at?

"Settings should be titrated in a sleep centre or in a controlled setting such as hospital, or, at times, in the patient's home. With positive airway pressure therapy, both inspiratory positive airway pressure and expiratory positive airway pressure should be increased together until all apnoeas and hypopnoeas are resolved, followed by continued increases in inspiratory positive airway pressure to correct the hypoxaemia related to alveolar hypoventilation."

http://www.google.com/url?sa=t&rct=j&q= ... G2ACYe5VPg

Is that possible with the machine she is trying? Can a minimum delta be specified in the lab? And additional O2 titrated to match, if needed? Is a pulse-ox good enough for keeping an eye on all that? Or am I cluttering the thread with silly questions?

Jeff, your link is relevant in that it states best practices for titrating hypoventilatory disorders. Although the link above suggests titration in the lab as a best practice, that was not my point. At this point Madalot and her doctor have decided an extended home trial is sufficient, and I don't take issue with that.

The gist of my post above was that the ASV treament modality has some concerns regarding hypoventilation treatment. I think Madalot and her doctor can easily spot hypoventilation problems by analyzing minute volumes and SpO2 measurments. That approach seems fine to me for Madalot's home-based ASV trial...

-SWS wrote:Jeff, your link is relevant in that it states best practices for titrating hypoventilatory disorders. Although the link above suggests titration in the lab as a best practice, that was not my point. At this point Madalot and her doctor have decided an extended home trial is sufficient, and I don't take issue with that.

The gist of my post above was that the ASV treament modality has some concerns regarding hypoventilation treatment. I think Madalot and her doctor can easily spot hypoventilation problems by analyzing minute volumes and SpO2 measurments. That screening approach seems fine to me for Madalot's home-based ASV trial...

Thanks. That helps me understand. I appreciate it.

Madalot wrote:Sorry I didn't reply to posts yesterday - we ended up putting my daughter's horse down and obviously it was very stressful and emotional around here all day and last night.

I emailed my doctor asking her if she had a preference in machine and have requested a phone conversation with my RT to discuss all the issues.

I slept yesterday afternoon (ASV) and the mask situation was horrible, most likely from the humidity. My face WAS wet and the mask was sliding all over the place, making all these stupid leaking sounds. Same thing happened last night, waking me up over and over again.

As much as I enjoy the humidity, it's not worth this aggravation.

My plan right now is to use the Trilogy tonight and see if the mask issues stop and how I sleep.

One way or another, I must make a decision in the next day or so -- and stick with it.

Maddy, so sorry about the horse, my daughter has 3 horses and I worry about them too. Can you try turning the HH down or Off, can you use it just in "passover" mode as Mike does. You never seemed to miss the humidity on the Trilogy, right? Mike always had trouble with dampness and leaks if I even tried to raise the HH to just 1. It's good to see SWS and jnk working with you!

-SWS,

Thank you for posting the information. It's got my mind spinning and while I understand what you are suggesting I do, I'm not sure how to accomplish it.

I think I'm in over my head, so to speak. What you are suggesting is very important and should be looked at, carefully, before a final decision is made. But I don't know how to do it with what I have available to me.

I only did one overnight pulse ox test (so far anyway) and it looked really good, never dropping below about 92%. It was a bad night with the cold starting, the dampness making my mask move all over the place and my hand/finger went so numb I finally had to take the thing off.

:::sigh:::

I am in over my head.

Madalot wrote:I am in over my head.

I know nothing about the technical details of either machine. But I can give you my wholehearted support and affection. I hope this gets sorted out soon. I know you will be so relieved once the decision is made.

I am also very sorry about your horse.

You've got a lot on your plate right now and I hope you are taking very good care of yourself.

((( hugs )))

-SWS wrote:So in summary, I suggest a little bit of microanalysis of your flow data. Look at flow graphs during low minute volume periods and during low SpO2 periods as well. I’d suggest examining flow graphs at a graph scale of say one-minute resolution.

Okay -- a decent night's sleep and a fresh attitude and perspective. I want/need to do this. Here is the report from Wednesday night:










I have SleepyHead. How do I look at the data to see what you're talking about?