Checking in for 2012

[Madalot]

Hello everyone - thought I'd check in since I haven't updated lately.

The new year is bringing a new insurance, thus perhaps my being a bit more proactive in questioning/rethinking my treatment and equipment.

My pulmonologist sees me every three months, which is my first question. IF insurance is dictating that schedule because of the ventilator, I can't change that. However, I am ready to question, again, IF the ventilator is necessary for me at this stage. All threads and discussion about ASV's has got me wondering IF I could go that route. The last time I asked, she said she was NOT changing my equipment, but never offered any explanation as to why - and I was too tired to force her to delve further.

Nothing has really changed with my treatment, other than my attitude towards it. Do I wake up a lot still? I guess I do, but I don't pay any attention to it. I DO know that getting my husband on xpap therapy HAS made him sleep better, thus I seem to sleep less disturbed. So, his restlessness WAS a factor in my sleep disturbances.

I know that I MUST be already dozing off before getting hooked up. If I try to sleep before I am that tired, I lay there, tossing and turning, frequently fighting the machine. I have occasional bouts of "suffocation" which seem to be difficulty exhaling against the EPAP (9), but it doesn't happen every night. Anyway -- I find myself sitting up watching TV, playing computer games and/or reading until I simply cannot stay awake (The Kindle Fire has been a blessing to keep me occupied). My transition from "awake" to "sleeping well on the machine" goes much more smoothly this way.

Daytime fatigue is still just as bad. I find that if I keep busy (ie moving around) I can stay awake, but as soon as I sit down, fatigue overwhelms me and I can't stay awake. And since I cannot move around all the time - yes, I sleep during the day a lot. I don't bother fighting it AND don't monitor the ventilator during the daytime naps.

What I AM finding interesting is IF I nap without the ventilator (I took an hour nap in my recliner yesterday without it - I know, bad me) I wake feeling better than I do when I sleep with it.

So, the new year has prompted me to reevaluate everything with my doctor. I am supposed to see her next week, but have already asked her about the necessity of my coming every 3 months. So, we'll see.

I hope everyone is doing well and has a happy and healthy new year.

[Madalot]

Today may be a legal holiday, but my doctor is doing emails and I've had a pretty decent "conversation" with her via email.

Her opinion is that IF insurance will approve the switch, she has no problem with my giving an ASV machine a try to see if I can do that instead of this costly ventilator.

So, I will call my DME tomorrow and ask them about the feasibility of doing a trial/switch to an ASV as opposed to the ventilator.

If this pans out, I am going to need to do some SERIOUS reading on the ASV machines.

[JohnBFisher]

... However, I am ready to question, again, IF the ventilator is necessary for me at this stage. All threads and discussion about ASV's has got me wondering IF I could go that route. The last time I asked, she said she was NOT changing my equipment, but never offered any explanation as to why - and I was too tired to force her to delve further. ...

It is very good to see (from your second note) that your doctor is willing to try new things. I would suggest that you will want to try to use the Respironics ASV unit instead of the Resmed ASV unit. Why do I suggest one over the other? The Respironics unit has been designed to encourage your to breathe as much as possible. That is, it encourages patient triggered breathing of the volume of respiration. The Resmed unit tends to enforce the volume of breathing over the patient triggered breathing.

Since you daily struggle with your ventilator, it may be that the algorithm within the Respironics ASV might help address your issue. However, I would suggest that you talk with your doctor and the sleep lab that they treat you as if you had complex sleep apnea. You can not handle pressures that are too high. These units typically ramp the pressure upto 25 or 30cm H2O. Since you suffer from muscular weakness this would tend to decrease your ability to breathe against this pressure. So, if they can limit the top end pressure (as they would need to for someone with complex sleep apnea) that would probably be a good approach.

If done correctly, the titration sleep study with an ASV unit would help locate that top end. But since your situation is so unique, it might be wise to help guide them into what would be the best answer for you.

... Nothing has really changed with my treatment, other than my attitude towards it. Do I wake up a lot still? I guess I do, but I don't pay any attention to it. I DO know that getting my husband on xpap therapy HAS made him sleep better, thus I seem to sleep less disturbed. So, his restlessness WAS a factor in my sleep disturbances. ...

LOL! Who would have thought that helping him get better sleep would help you. Just goes to show that it is always best to help others. Like bread on the water, you never know when it will be returned many times over.

... I know that I MUST be already dozing off before getting hooked up. If I try to sleep before I am that tired, I lay there, tossing and turning, frequently fighting the machine. I have occasional bouts of "suffocation" which seem to be difficulty exhaling against the EPAP (9), but it doesn't happen every night. Anyway -- I find myself sitting up watching TV, playing computer games and/or reading until I simply cannot stay awake (The Kindle Fire has been a blessing to keep me occupied). My transition from "awake" to "sleeping well on the machine" goes much more smoothly this way. ...

Here the Respironics unit would be the better choice. From what I've read, you tend to decrease your respiration (volume at lease) pretty quickly when you fall asleep. It sounds as if the ventilator is insisting on a certain volume. The Respironics does not insist as much on the volume, whereas the Resmed does. It uses the average minute volume over the past three minutes to ascertain you continue to breathe. As I've mentioned before the difference between the two is analogous to the driving of a luxury car and a sports car. The luxury car removes a lot of the feel from the road from the driver. This "loose" feel reduces the stress of the drive. The sports car passes along a lot more of the road feel. That "tight" steering helps the driver, but tends to wear them down faster. The Resmed WILL make certain you breathe. That insistence sounds very similar to the ventilator. It sure sounds as if you need a "looser" feel from your unit.

Of course, this is just my opinion based on my experience. I do not know how well it would do when there is muscular insufficiency in the mix.

... Daytime fatigue is still just as bad. I find that if I keep busy (ie moving around) I can stay awake, but as soon as I sit down, fatigue overwhelms me and I can't stay awake. And since I cannot move around all the time - yes, I sleep during the day a lot. I don't bother fighting it AND don't monitor the ventilator during the daytime naps.

What I AM finding interesting is IF I nap without the ventilator (I took an hour nap in my recliner yesterday without it - I know, bad me) I wake feeling better than I do when I sleep with it. ...

Sure makes it sound as if the ventilator itself is causing arousals. Those shifts from deeper to lighter sleep can leave you starved for deep, restorative sleep as well as REM sleep.

... So, the new year has prompted me to reevaluate everything with my doctor. I am supposed to see her next week, but have already asked her about the necessity of my coming every 3 months. So, we'll see.

I hope everyone is doing well and has a happy and healthy new year.

I sure hope the new year finds some new answers and approaches for you. Answers and approaches that will help you wring the most out of your situation as is possible.

We've had a calm new year ... but then, the year is young! (Always the pessimist!)

[ameriken]

It's seemed like for a long time you've needed an ASV and I'm glad to hear you might be getting one. (I pray that you do!)

In addition to reading about the ASV's, you might want to read the posts here regarding the ASV's and the associated breathing problems we have. And of course, I know you'll post your own questions. Those of us who require an ASV have a larger number and variety of breathing issues than folks with the standard obstructive apneas and I think you'll learn a lot from us....but I know we can learn a lot from you too so I do hope to see you post your experiences with the ASV.
FInding someone in the medical community who is familiar with these machines, our breathing issues, as well as how these machines interact with those issues is a rarity. I often think the best source of info on the ASV is someone else who uses the ASV.

Good luck and keep us up to date, Happy New Year!

[Madalot]

Thanks John & Ameriken,

Great information that I will be reading and re-reading I'm sure.

I really only have two major gripes with the ventilator, thus why I'm asking about possible ASV as an alternative:

1) Cost - this thing is a perpetual rental (patients cannot purchase) and the monthly rental is outrageous. Ridiculous if you ask me.

2) Data - I cannot get any data that really pertains to sleep apnea. All the data is geared towards ventilation and I can't track even basic sleep apnea info with it.

We'll see. I'll have to check in with my DME tomorrow and see if this is even a possibility.

Edited to add: I just realized that saying these are my only real gripes isn't really accurate. I think the ventilator is treating my breathing issues just fine, but my overall quality of sleep stinks. That's another reason for thinking about other equipment.

[thud]

Good luck Madalot. Fatigue is my major complaint too. I've been on CPAP for 4 months, but, I'm not so sure my apnea is the root of my fatigue. Been battling it for 2 years now.

Have a good 2012, and everyone else too.

[DoriC]

Happy New Year Maddie! It sure would be interesting to see how you on the ASV machine. I know nothing is ever simple for you but couldn't an RX from your Dr to the DME do the trick even just on a trial basis?

[Madalot]

Happy New Year Maddie! It sure would be interesting to see how you on the ASV machine. I know nothing is ever simple for you but couldn't an RX from your Dr to the DME do the trick even just on a trial basis?

Probably. I am calling the DME tomorrow to ask. Doctor said it would be a good starting point.

She also said that she usually follows neuromuscular patients every 3 months, but that I am so knowledgeable on the equipment that we can go to twice a year.

[Bright Choice]

Madalot - I read your posts but do not often post a response. When I read this post today I just felt so happy for you! Congrats on "thinking outside of the box" and finding the your DH was causing some of your arousals. You sound good, I'm gladalot about that! Keep up the good work - "question everything"!

[rosacer]

So nice to hear from you Madalot.

I hope all will be OK with the DME and you will get your ASV soon, how wonderful it would be if that's the solution. Let's expect the best. Happy Full of Health New Year to yuo !

[HoseCrusher]

Ya, ya, ya,... Blame it on the husband.

Happy New Year and I am glad to hear your husband is improving his sleep.

I don't think you have anything to loose by trying different things. Who knows, you may "stumble" the right piece for your puzzle.

All my best to you and yours and thanks for keeping us informed.

[BlackSpinner]

Happy new year Maddy! It was good to hear how you are doing.
Congrats on getting the husband using too. It will help his energy and health too.

[Madalot]

Thanks everyone.

BlackSpinner - my husband used the loaner VPAP a couple nights after I tried it. The first night, NO snoring, which was wonderful. After a couple nights, he said he could tell he was sleeping better AND he felt less tired during the day. When we felt it was time to return the loaner machine, we opted to purchase one for him. He has used the machine every night, all night.

He should be a poster child - saying "just do it!" -- I'm very proud of him.

As for me, it appears to me that my doctor will agree to let me do/try anything, as long as it isn't unsafe or stupid.

I am so torn. IF I can arrange to try an ASV, is it the right thing for me? Admittedly, I have not learned that much about the ASV machines and being honest, I find myself bleery-eyed when I read some of the stuff being written about them - overwhelmed if you will.

I am asking myself if I am better off sticking with the Trilogy, knowing that time and disease progression will force me on it (or something similar) anyway?

Is it worth the trouble, time and hassle involved to bother?

What can an ASV offer me (in the way of treatment) that the Trilogy isn't providing? Data geared towards sleep apnea is one (that's a plus) but beyond that, what would I be gaining over the Trilogy?

And who is going to answer that for me? I don't know if my doctor or the RT's are certain. I know I'm not.

[archangle]

Be careful you don't swap to ASV, find it doesn't work, and then get screwed over and have difficulty/cost getting the ventilator back.

I wonder if a DME might be willing to let you try an ASV for free on a trial basis. Or for a daily fee.

[Madalot]

Be careful you don't swap to ASV, find it doesn't work, and then get screwed over and have difficulty/cost getting the ventilator back.

This is a concern I have (or fear if you will) that keeps me teetering back and forth about trying this. I wish I knew for sure whether it would be better.