Reality of My Situation - Time to Face It

[Madalot]

After waiting for two and a half months and struggling to make sure it was set up properly, my sleep study indicating that if I just stay off my back, everything will be fine, is upsetting and disappointing. My doctor's last email said that she wants to leave me on the Trilogy on the current settings and that if I sew a tennis ball in my pj's, everything will be great.

The reality is that I spend almost NO time on my back at night (my recliner is different but I'm not talking about that). But I can already tell that nobody is going to believe me.

The situation is pretty much what I thought -- I have diaphragm muscle weakness AND obstructive sleep apnea (OSA only being a problem when I'm on my back) but as far as they are concerned, the ventilator is adequately treating all of this and I am just fine.

So the fact that I wake up a lot during the night, usually only get the morning feeling half human, and fall asleep almost every afternoon/evening because I just can't stay awake --

I can function for a few hours a day and the rest of the day is worthless to me. I rarely leave the house anymore and depending on where we go, I fall asleep in the van.

I've given this a good fight and really tried to get THEM to see that something just isn't quite right. But I have failed.

I'm 49 years old and this is the reality of my existence. And there isn't a damn thing I can do about it.

But on the positive side:

My situation DID bring me here, to this forum, where I have learned so much and made a lot of friends. I can try to take what I have learned and help others that come here needing a advice, information, support or just a kind word. And so many have given me all of that (and more) -- it's only fair and proper that I stick around and give some of it back.

Please know to everyone that has tried to help me, even those that got upset or irritated with me, that I have appreciated all of you -- and am grateful to you all.

[Slinky]

Aw, h*ll, Maddie. Take a break from all the frustration and disappointment. We're here for you. Take the time to regroup. Just the frustration, anticipation and preliminaries were enough to exhaust anyone and emotions can suck the energy out of us as well as physical over exertion. (((hugs))).

[ozij]

Madalot,
Do try to get your doctor to focus on what it was that woke you up each time during study, because after all, you were waking up then too.
If i understand how these things work, it's not the tech knows you who did the analysis, it was a doctor who, for all we know, thought he was supposed to be answering "what pressure do you need in order to sleep well", whereas your question it "Why the hell am I waking up, and what can we do about it?" those are different questions.

O.

[Madalot]

Madalot,
Do try to get your doctor to focus on what it was that woke you up each time during study, because after all, you were waking up then too.
If i understand how these things work, it's not the tech knows you who did the analysis, it was a doctor who, for all we know, thought he was supposed to be answering "what pressure do you need in order to sleep well", whereas your question it "Why the hell am I waking up, and what can we do about it?" those are different questions.

O.

I agree with everything you've said here. I'm so aggravated and frustrated right now and that's why I feel like giving up and just accepting the situation.

I could go on and on about how I talked to my doctor, talked to MY RT and talked to the tech/RT and everybody seemed so enthusiastic about having a patient like me, that understands the machines (to a point) and can provide useful information about how *I* am doing on them, but in the end, they really only want you to do what you're told and shut up.

IF I could get someone to listen to me, I think it would be very telling if they knew that right from the start, the backup rate was uncomfortable for me, even though the tech confirmed it was set to 7. If it was, then either that machines 7 is different from mine OR another setting somewhere was making it off. Regardless, I was miserable for those two hours and that's why I had trouble sleeping.

In hindsight, I should haved called the tech and been a pain in the ass and made him figure it out, but we had talked beforehand and agreed that some of the settings may make me uncomfortable and I agreed to be as tolerant as I could.

In the attempt to not be a pain in the ass, I ended up where I am now. Useless study, providing stupid results that have absolutely no bearing whatsoever on what's happening.

And I don't want to accept it, but I'm tired. I feel awful and I'm tired. It's stupid to have to fight this hard to get answers, especially when I've done so much to learn what I have to help understand the therapy.

[jbn3boys]

I'm so sorry, Maddie. I cannot even imagine the frustration you are experiencing. And to be sleep deprived on top of it. Sigh. I really hope that you will just take a break, enjoy Easter with your family, and some day (whether that be next week, or next month) that you will get to the point of wanting answers again. I know it will be hard. And you will have to repeatedly tell people exactly what you NEED, but I think you can do it. Maybe not right now, but I believe you can! You just take as long as you need to rest. This whole sleep study fiasco has taken a lot out of you. Allow yourself time to recuperate before you make any decisions. Maybe a face-to-face conversation with your doctor would help the situation, as opposed to just emails back and forth. But again, not until you have rested.

Hang in there, Maddie! I'm glad you are sticking around no matter what!

[snuginarug]

Do take some time to recuperate. jbn3boys says what I cannot find words for. Hang in there. Take good, gentle care of yourself.


((((( hugs )))))

[Mawk1]

After waiting for two and a half months and struggling to make sure it was set up properly, my sleep study indicating that if I just stay off my back, everything will be fine, is upsetting and disappointing. My doctor's last email said that she wants to leave me on the Trilogy on the current settings and that if I sew a tennis ball in my pj's, everything will be great.

The reality is that I spend almost NO time on my back at night (my recliner is different but I'm not talking about that). But I can already tell that nobody is going to believe me.

The situation is pretty much what I thought -- I have diaphragm muscle weakness AND obstructive sleep apnea (OSA only being a problem when I'm on my back) but as far as they are concerned, the ventilator is adequately treating all of this and I am just fine.

So the fact that I wake up a lot during the night, usually only get the morning feeling half human, and fall asleep almost every afternoon/evening because I just can't stay awake --

I can function for a few hours a day and the rest of the day is worthless to me. I rarely leave the house anymore and depending on where we go, I fall asleep in the van.

I've given this a good fight and really tried to get THEM to see that something just isn't quite right. But I have failed.

I'm 49 years old and this is the reality of my existence. And there isn't a damn thing I can do about it.

But on the positive side:

My situation DID bring me here, to this forum, where I have learned so much and made a lot of friends. I can try to take what I have learned and help others that come here needing a advice, information, support or just a kind word. And so many have given me all of that (and more) -- it's only fair and proper that I stick around and give some of it back.

Please know to everyone that has tried to help me, even those that got upset or irritated with me, that I have appreciated all of you -- and am grateful to you all.

I guess I don't understand what you are asking. What outcome were you hoping for? An upping of your settings?

[Madalot]

After waiting for two and a half months and struggling to make sure it was set up properly, my sleep study indicating that if I just stay off my back, everything will be fine, is upsetting and disappointing. My doctor's last email said that she wants to leave me on the Trilogy on the current settings and that if I sew a tennis ball in my pj's, everything will be great.

The reality is that I spend almost NO time on my back at night (my recliner is different but I'm not talking about that). But I can already tell that nobody is going to believe me.

The situation is pretty much what I thought -- I have diaphragm muscle weakness AND obstructive sleep apnea (OSA only being a problem when I'm on my back) but as far as they are concerned, the ventilator is adequately treating all of this and I am just fine.

So the fact that I wake up a lot during the night, usually only get the morning feeling half human, and fall asleep almost every afternoon/evening because I just can't stay awake --

I can function for a few hours a day and the rest of the day is worthless to me. I rarely leave the house anymore and depending on where we go, I fall asleep in the van.

I've given this a good fight and really tried to get THEM to see that something just isn't quite right. But I have failed.

I'm 49 years old and this is the reality of my existence. And there isn't a damn thing I can do about it.

But on the positive side:

My situation DID bring me here, to this forum, where I have learned so much and made a lot of friends. I can try to take what I have learned and help others that come here needing a advice, information, support or just a kind word. And so many have given me all of that (and more) -- it's only fair and proper that I stick around and give some of it back.

Please know to everyone that has tried to help me, even those that got upset or irritated with me, that I have appreciated all of you -- and am grateful to you all.

I guess I don't understand what you are asking. What outcome were you hoping for? An upping of your settings?

Can someone else field this for me? I'd really appreciate it as I'm too tired (and sick with a cold) to explain this. No offense to Mawk1 because I realize you haven't followed my saga...

[Bright Choice]

My heart breaks for you and your frustration. I cannot imagine having to deal with so many things at one time. I just can't believe that you won't find some relief. I'm too new here to offer much, but you have a lot of friends here who can offer you different "camera angles" and different ways of looking at this. In the meantime, take some time off, reflect a bit and hopefully enjoy spring as if flowers forth.

Blessings!

[DoriC]

I think I know how exhausted and disappointed you are right now but I also know you're not ready to quit. I'm not sure but I think most of your interaction has been by email with your Dr lately, so maybe it's time for a followup face to face office visit after you regroup. Someone should be able to answer that question for you, why you wake so much and what to do about it? Sending a hug to you.

[Breathe Jimbo]

Can you take a nap when you poop out in the afternoon?

[newhosehead]

I think I know how exhausted and disappointed you are right now but I also know you're not ready to quit.

Kathy, I have to echo what Dori said above as it is what I have been feeling as I struggled with what response to make to this post. I think there are times when it is okay to feel ready to quit. It is just human, especially when you are battling both a disease and the world of medicine. So I really do think sometimes we just need to give ourselves permission to feel what we feel.
You have just been through what has surely been an exhaustive battle in and of itself and then to have the whole thing come back at you with (it seems) nothing to offer you in terms of the question you were asking the entire time!...I believe I would be feeling exactly as you are.
However. I do not think you will remain "ready to quit." That is not the person I have come to know on this forum. I believe that you will ( as we all tend to do even when it seems very unlikely and maybe even undesirable) come back to fight another day. Only you will know when that time is. Just know that you are supported in whatever decision you make or however you happen to feel at any given point in time. I have struggled in this life, as I am sure we all have, but it is impossible to really know the struggles of another unless we have walked the very same path. Last but far from least, know that I have faith in who you are.

Jeanette

[tschultz]

I'm so sorry to hear that you did not get more answers. Being told to simply not sleep on your back I feel was simply an attempt to give you something, however meaningless it may be.

I know I get frustrated when all too often it seems that doctors (really the whole medical community) are content as long as your are doing "better" with treatment than without, and usually do not dig deeper to optimize anything. Sure there are some that I think genuinely try, but sooner or later profit and lack of time often become the primary reason for an eventual disinterest on their part. I know first hand that pushing the doctors is about as easy as pushing a rope.

Being someone new to the whole ordeal of SDBs, I can say that what I've seen so far tells me that there is still far more that medical science does not understand about sleep and its impacts on each of us than they really do know. Just reading through the many threads on this forum shows that there is no such thing as a simple sleep issue. This is especially true when multiple sleep issues become combined, the result of which is usually never simply "text book" in nature.

I do feel your are entitled to take a rest from everything and enjoy time with loved ones, especially for what's left of a long weekend. When the time is right you may be able to push your doctor for some more insight into what indeed is waking you up and disturbing what sleep you do get. This has been an ongoing problem for you and I don't think it has been given enough attention.

Hang in there, and I am sure this goes without saying, but do feel free to vent. There are many great people here that will support you however possible.

[Otter]

If your OSA is severe enough to cause desaturation at your current settings, data from a $100 pulse oximeter should snap your doctor out of it. If not, or perhaps anyway, find a doctor who will listen to you. That really is important whether you have OSA or not.

I hope everything improves for you soon.

[angela6]

I have read your past posts and like Mawk1 I still don't know what you were trying to communicate to the doctor. If you have muscle weakness due to MD and OSA wouldn't the ventilator be addressing these issues? Do you want a different rate between inhalation and exhalation? I know you are frustrated but your choices are a cpap, an autopap, a bipap, auto bipap or a ventilator with or without oxygen. And I not being flippant, I just don't understand.