Trilogy - PTB Down - UPDATE

Pugsy wrote:Oh...and you probably know this already but Palerider is in the same boat with me. That's why he doesn't say much. He cares too but doesn't know what to offer. Wishes he did but like me why out of our own comfort zone and like I have always said...messing with stuff on a cpap or apap or bilevel is one thing but it's a whole other thing to be messing with stuff on a person who is using a ventilator.

Pugsy wrote:Hi Maddie...just wanted to say that as usual I am following your struggles but as we have discussed in the past....you know more about your machine and your issues than I could ever possibly know and while I don't say much in this type of threads...doesn't mean I don't care and I am still here for moral support.
Oh...and you probably know this already but Palerider is in the same boat with me. That's why he doesn't say much. He cares too but doesn't know what to offer. Wishes he did but like me why out of our own comfort zone and like I have always said...messing with stuff on a cpap or apap or bilevel is one thing but it's a whole other thing to be messing with stuff on a person who is using a ventilator.

Raisedfist has some good ideas...goes along with what I have always said...careful and well thought out and planned experiments. Do them at your own pace. You know yourself better than anyone else.
I remember your last fight to try to get an in lab sleep study with the Trilogy...you are right...snowball's chance in hell of ever happening.

Hugs...

Madalot wrote:It's also very hard to explain to people exactly how this disease works. Things are incredibly variable from day to day, with something as simple as turning on my toothbrush being impossible one day after no issues the previous day. It gets to the point that you don't even try to figure out WHY something is happening - you just roll with it.

ajack wrote:This is my point, if you are exhausted, you cognitive ability is greatly reduced. You have had the trilogy for a number of years and a search shows it's been widely talked about with you. After all this time, I think you need to accept that it is too difficult for you to drive. I think the adjustments you have made has only decreased the machines function. To the point where you now find yourself.

I would want a sleep study using the trilogy and getting them to set it up. I read that with your last sleep study, this didn't happen. Most sleep techs rarely come across hard cases and 99% is garden variety apnea. You may even need a hospital admission. Adjusted over a few days by an ICU respiratorist who would know this stuff.

what you have been doing over the last few years isn't working and hasn't worked, I think you need a full review.

When I was setting up my ST, I found the forums a desert on ventilation stuff

palerider wrote: Maybe this could help others to understand? https://en.m.wikipedia.org/wiki/Spoon_theory

Pugsy wrote:

palerider wrote: Maybe this could help others to understand? https://en.m.wikipedia.org/wiki/Spoon_theory

Thanks for reminding me of the Spoon theory. I had seen it before but had forgotten it.
It can be applied to even less serious but chronic health conditions as well.

I had a visit yesterday with a new doc. Someone who specializes in pain management. She totally understood when I said that "the pain is tolerable technically but I get so damned tired of managing it and it drains my energy levels which in turn makes it less tolerable. I don't have the energy left to fight it"

The spoon theory...helps me realize that I don't have the unlimited number of spoons I used to have (and would like to have) and I have to be smarter about using the ones I do have.
On the plus side of things...there is something we are going to do to see if it can help reduce the chances of the pain sucking up all my spoons.
More on that later and not here in Maddie's thread.

palerider wrote:

ajack wrote:This is my point, if you are exhausted, you cognitive ability is greatly reduced. You have had the trilogy for a number of years and a search shows it's been widely talked about with you. After all this time, I think you need to accept that it is too difficult for you to drive. I think the adjustments you have made has only decreased the machines function. To the point where you now find yourself.

I would want a sleep study using the trilogy and getting them to set it up. I read that with your last sleep study, this didn't happen. Most sleep techs rarely come across hard cases and 99% is garden variety apnea. You may even need a hospital admission. Adjusted over a few days by an ICU respiratorist who would know this stuff.

what you have been doing over the last few years isn't working and hasn't worked, I think you need a full review.

When I was setting up my ST, I found the forums a desert on ventilation stuff

Hey, does "ajack" stand for "arrogant jacka**"???

Know it all newbie *shaking head*.

Madalot wrote:

ajack wrote:This is my point, if you are exhausted, you cognitive ability is greatly reduced. You have had the trilogy for a number of years and a search shows it's been widely talked about with you. After all this time, I think you need to accept that it is too difficult for you to drive. I think the adjustments you have made has only decreased the machines function. To the point where you now find yourself.

I would want a sleep study using the trilogy and getting them to set it up. I read that with your last sleep study, this didn't happen. Most sleep techs rarely come across hard cases and 99% is garden variety apnea. You may even need a hospital admission. Adjusted over a few days by an ICU respiratorist who would know this stuff.

what you have been doing over the last few years isn't working and hasn't worked, I think you need a full review.

When I was setting up my ST, I found the forums a desert on ventilation stuff

With all due respect, it took a lot of time, sweat and effort to get myself to the point where it WAS working very well, for YEARS. Much of the insight came from people here. It has only been in the last 6-12 months that I've noticed issues with serious awakenings (and the lower PTB) but there ARE other things going on (working part time) that MAY be contributing.

While I agree that some of the Trilogy's functions are complicated and some are difficult for me to grasp (I do not have a science mind) - I "get" a lot more than most Trilogy patients and understand a ton of what is going on and what the functions do. My comment that I need to read and digest your last post with detailed information should indicate that I am being cautious and careful and won't make changes until I understand them. Your comment about the Trilogy being "too difficult for you to drive" is a little hurtful.

I have been tired by afternoon my entire life. In the mornings, usually, I am fresh and my cognitive abilities are good. I have been working part time, I do paperwork, our bills, handle my husband's business, etc. Yes, by afternoon, I am getting very tired and I agree that my cognitive abilities are diminished, but in the mornings, they are not. It's the nature of my existence and I accept it. I simply have to leave tasks that require concentration for the mornings.

As far as a sleep study - I can tell you right now that it won't happen. Even if I could get a sleep study (which is questionable), being able to get one on the Trilogy? Don't hold your breath. My last sleep study was the most horrendous and stressful endeavor BEFORE it ever happened. It also took me months of screaming and clawing and still couldn't get it on the Trilogy.

When I see my new Pulmo in December (and I just cannot go before then) - if HE wants to do a study, we'll discuss it then. But on the Trilogy? Unless the clinic already has a Trilogy (again, doubtful) they won't get one just for my study and they won't use mine. Believe me, I fought that battle the last time and lost. I even had Respironics offer to LOAN the clinic a Trilogy for my study and they still refused.

All this being said - I do appreciate the input and still plan on reviewing the information and figuring out what I might be able to try to make things better. Today is my last day of working so I'll have more time in the mornings to read, think and see what I can do.

ajack wrote:After searching some of your threads before and reading the horror you have gone through. The point I was trying to make was that you shouldn't have to. The truth is, they refused to use the trilogy in the sleep study, because they don't know how to drive it.

The professional help you have had, has been inadequate. Waiting till December shouldn't be the option. Does the US system have a patient advocacy program? I don't know what's wrong, but I had a relative some years ago with with MND and I remember the care he got. He was managed by the hospital's MND unit and had regular hospital admissions.

ajack wrote:

Madalot wrote:

ajack wrote:This is my point, if you are exhausted, you cognitive ability is greatly reduced. You have had the trilogy for a number of years and a search shows it's been widely talked about with you. After all this time, I think you need to accept that it is too difficult for you to drive. I think the adjustments you have made has only decreased the machines function. To the point where you now find yourself.

I would want a sleep study using the trilogy and getting them to set it up. I read that with your last sleep study, this didn't happen. Most sleep techs rarely come across hard cases and 99% is garden variety apnea. You may even need a hospital admission. Adjusted over a few days by an ICU respiratorist who would know this stuff.

what you have been doing over the last few years isn't working and hasn't worked, I think you need a full review.

When I was setting up my ST, I found the forums a desert on ventilation stuff

With all due respect, it took a lot of time, sweat and effort to get myself to the point where it WAS working very well, for YEARS. Much of the insight came from people here. It has only been in the last 6-12 months that I've noticed issues with serious awakenings (and the lower PTB) but there ARE other things going on (working part time) that MAY be contributing.

While I agree that some of the Trilogy's functions are complicated and some are difficult for me to grasp (I do not have a science mind) - I "get" a lot more than most Trilogy patients and understand a ton of what is going on and what the functions do. My comment that I need to read and digest your last post with detailed information should indicate that I am being cautious and careful and won't make changes until I understand them. Your comment about the Trilogy being "too difficult for you to drive" is a little hurtful.

I have been tired by afternoon my entire life. In the mornings, usually, I am fresh and my cognitive abilities are good. I have been working part time, I do paperwork, our bills, handle my husband's business, etc. Yes, by afternoon, I am getting very tired and I agree that my cognitive abilities are diminished, but in the mornings, they are not. It's the nature of my existence and I accept it. I simply have to leave tasks that require concentration for the mornings.

As far as a sleep study - I can tell you right now that it won't happen. Even if I could get a sleep study (which is questionable), being able to get one on the Trilogy? Don't hold your breath. My last sleep study was the most horrendous and stressful endeavor BEFORE it ever happened. It also took me months of screaming and clawing and still couldn't get it on the Trilogy.

When I see my new Pulmo in December (and I just cannot go before then) - if HE wants to do a study, we'll discuss it then. But on the Trilogy? Unless the clinic already has a Trilogy (again, doubtful) they won't get one just for my study and they won't use mine. Believe me, I fought that battle the last time and lost. I even had Respironics offer to LOAN the clinic a Trilogy for my study and they still refused.

All this being said - I do appreciate the input and still plan on reviewing the information and figuring out what I might be able to try to make things better. Today is my last day of working so I'll have more time in the mornings to read, think and see what I can do.

After searching some of your threads before and reading the horror you have gone through. The point I was trying to make was that you shouldn't have to. The truth is, they refused to use the trilogy in the sleep study, because they don't know how to drive it.

The professional help you have had, has been inadequate. Waiting till December shouldn't be the option. Does the US system have a patient advocacy program? I don't know what's wrong, but I had a relative some years ago with with MND and I remember the care he got. He was managed by the hospital's MND unit and had regular hospital admissions.