Trilogy - PTB Down - UPDATE

[Julie]

Is that the most encouraging note you can post for Maddie? Is something like that really helpful?

[Madalot]

There is a huge disconnect between the academic world, aka studies you see on Google regarding certain populations with a specific disease where they run experiments until they are able to provide effective ventilation, and reality. Many sleep doctors, including ones that are also pulmonologists, do not have the time or care to investigate and be persistent to help you. I've seen probably 4-5 by now and all they look at is AHI and leaks for someone requiring non-invasive ventilation.

Physicians and researchers involved in studies and research know way more about a particular disease than most Dr's who work doing out-patient appointments where they just see OSA patients 99% of the time. But as the patient you're not sitting down with the guy who wrote a PhD dissertation on whether Volume-Assured Pressure Support therapy is more effective in reducing CO2 or subjectively more comfortable than expertly titrated bi-level spontaneous-timed mode in COPD patients.

You are doubly more in trouble if you don't live in a major city with big academic teaching hospitals. With centers that specialize in certain diseases. The USA is a huge country and many, many people fall through the cracks.

You are very correct on all this. I wasn't diagnosed (at all) until 2000-2001 and then I had a wide range of diagnoses: Fibromyalgia, Myotubular Myopathy, Limb-Girdle Muscular Dystrophy, Mitochondrial Myopathy - then finally, where I am now, Congenital Myasthenic Syndrome (with something else possibly they can't figure out yet).

I was in the DC area (major universities close by) until 2004 but now I live in "bum-diddly-nowhere" where major universities are at least 1.5 hours away - and I don't drive because my condition affects my eye muscles and turning my head causes double vision (dangerous for driving). Plus, my arms fatigue too quickly so I really can't hold the steering wheel for any serious length of time.

All that being said, I DO go to a major university hospital for my care. It takes careful planning with my husband's schedule to ensure he can take me. As I said, my Pulmonologist left and he assigned me to a new one that I do not see until December. Even if I called now to demand an earlier appointment (which I think is a little unnecessary at this stage), it's likely it would be 4-6 months before they had any openings and I'm already scheduled.

[Madalot]

Is that the most encouraging note you can post for Maddie? Is something like that really helpful?

Awww...thanks Julie, but it's okay. He's not wrong. I have, and continue to, live through exactly what he describes.

[raisedfist]

Is that the most encouraging note you can post for Maddie? Is something like that really helpful?

Madalot has already expressed what I've said in different words and the only reason I responded is to give reason to why, and I paraphrase with some exaggeration, "well just hop in your van and go to the sleep center and they will fix you up" isn't as easy as it sounds. Unfortunately, I suspect Madalot has felt this cold reality for quite a while now - but it's not my place to assume how someone feels or think I know what they are going through.

You do have a point though - I agree my post in itself is not particularly helpful to Madalot's situation.

[Madalot]

Is that the most encouraging note you can post for Maddie? Is something like that really helpful?

Madalot has already expressed what I've said in different words and the only reason I responded is to give reason to why, and I paraphrase with some exaggeration, "well just hop in your van and go to the sleep center and they will fix you up" isn't as easy as it sounds.

You do have a point though - I agree my post in itself is not particularly helpful to Madalot's situation.

It's all good! Your post, hopefully, will help to illustrate exactly why the assertion that I should, as you put it, "well just hop in your van and go to the sleep center and they will fix you up" really isn't all that easy or feasible.

It is very hard for people to understand what they do not deal with. It's true for me of other issues and ailments. I have dealt with my share of judgmental attitudes from people that just have no understanding of my situation and life. Case in point: I CAN walk in a very limited capacity but it has to be very short and carefully planned and executed. People that see me walking sometimes come at me, accusing me of faking needing the wheelchair since "you CAN walk!" They have no concept that I am using precious strength and energy and that each step drains me. If I push too hard, my leg muscles will collapse - and down I will go. I use the wheelchair to conserve strength so that when I DO need to walk, I can as long as I use other devices (cane, walker) or have someone or something (kitchen counters) to hold onto for support.

So, I get how some will bang their heads against a wall trying to convince me to just go and get a sleep study on the Trilogy! It's just not as simple as it may sound, just like if you see me walking, it's not what you might think it is.

[Madalot]

A little research yesterday may have given me the answer about which way to set the triggering sensitivity. What surprised me is I found the answer in one of my old threads here! I don't remember it ever happening.

Somebody told me back in 2011 that the lower the number, the more sensitive. Apparently, I started out at 4L/min and it was too sensitive, triggering too quickly on the slightest inhale (even not a real one), thus the move to 6L/min.

So, I moved it to 5L/min last night. Seemed okay so I'll leave it there for a while, then run a Direct View report and see if there is any change in PTB averages.

[raisedfist]

That sounds like a good plan Madalot. What's the range of sensitivity per l/min? like 1-8?

[Madalot]

That sounds like a good plan Madalot. What's the range of sensitivity per l/min? like 1-8?

Online info says 1-9 but I haven't checked on my Trilogy to confirm.

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[WearyOne]

It is very hard for people to understand what they do not deal with. It's true for me of other issues and ailments. I have dealt with my share of judgmental attitudes from people that just have no understanding of my situation and life. Case in point: I CAN walk in a very limited capacity but it has to be very short and carefully planned and executed. People that see me walking sometimes come at me, accusing me of faking needing the wheelchair since "you CAN walk!" They have no concept that I am using precious strength and energy and that each step drains me. If I push too hard, my leg muscles will collapse - and down I will go. I use the wheelchair to conserve strength so that when I DO need to walk, I can as long as I use other devices (cane, walker) or have someone or something (kitchen counters) to hold onto for support.

So, I get how some will bang their heads against a wall trying to convince me to just go and get a sleep study on the Trilogy! It's just not as simple as it may sound, just like if you see me walking, it's not what you might think it is.

Sorry you have to deal with the judgmental attitudes, Madalot. I have a dear friend who has several health issues that most days keeps her in extreme fatigue and pain, some of which are fibromyalgia, small fiber peripheral neuropathy, postural orthostatic tachycardia syndrome (POTS), and trigeminal neuralgia. Her husband needs to have both of his knees replaced. She usually can't get out. On one day when they were both doing better than usual, but still not good, obviously, they went to Target and both needed to use the motorized carts in order to make it around the store. Before they went their separate ways at the front of the store, they were joking about something, and then my friend drove off. A customer came up to my friend's husband and said, "That's a a shame. Why don't you two leave those for someone who actually needs them." My friend's husband explained a little bit about their conditions, and the customer left without saying a word. not even apologizing. It made me so angry when she told me this.

And the looks the get sometimes when using the handicap parking spaces (they have the tags) since they don't LOOK like they need to use a handicap space.

"Invisible illnesses" do truly exist and are often much worse than the ones that show. And just because you're able to laugh about something once in a while, doesn't mean everything's "all better" now.

[Madalot]

Sorry you have to deal with the judgmental attitudes, Madalot. I have a dear friend who has several health issues that most days keeps her in extreme fatigue and pain, some of which are fibromyalgia, small fiber peripheral neuropathy, postural orthostatic tachycardia syndrome (POTS), and trigeminal neuralgia. Her husband needs to have both of his knees replaced. She usually can't get out. On one day when they were both doing better than usual, but still not good, obviously, they went to Target and both needed to use the motorized carts in order to make it around the store. Before they went their separate ways at the front of the store, they were joking about something, and then my friend drove off. A customer came up to my friend's husband and said, "That's a a shame. Why don't you two leave those for someone who actually needs them." My friend's husband explained a little bit about their conditions, and the customer left without saying a word. not even apologizing. It made me so angry when she told me this.

And the looks the get sometimes when using the handicap parking spaces (they have the tags) since they don't LOOK like they need to use a handicap space.

"Invisible illnesses" do truly exist and are often much worse than the ones that show. And just because you're able to laugh about something once in a while, doesn't mean everything's "all better" now.

Yeah, sadly it happens. My biggest gripe right now is assholes (sorry, but that's what they are) that park half way in a handicap spot but over the lines that are there for wheelchair access. We went out for breakfast yesterday (a rare treat for me) and there was ONE handicap spot left, but both people on each side had parked so far over the lines of the spot and into the wheelchair access lines that it made the spot totally unusable for me. My van has a side ramp and those lines are imperative for me to be able to lower the ramp and have enough room to get out without hitting the vehicle next to me. I have even come out from a store and found a vehicle parked ON THE LINES (like it's a spot) and completely block access to my van/ramp. If I was traveling alone (which I don't do fortunately) I would be completely trapped and unable to get into my van until the asshole returned and moved their vehicle. When this happens, I have to wait for my husband to move the van so I can get in. It's infuriating and it happens ALL THE TIME.

[Pugsy]

My biggest gripe right now is assholes (sorry, but that's what they are) that park half way in a handicap spot but over the lines that are there for wheelchair access.

Actually I think "assholes" is probably too nice of an adjective. I was thinking something a little more colorful.

[Madalot]

My biggest gripe right now is assholes (sorry, but that's what they are) that park half way in a handicap spot but over the lines that are there for wheelchair access.

Actually I think "assholes" is probably too nice of an adjective. I was thinking something a little more colorful.

I confronted a woman once who parked between two EMPTY handicapped spots making both spots worthless to me. I was angry but controlled. I explained to her that doing that was inconsiderate and made the spots unusable to someone like me. She called me "hateful."

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[Pugsy]

I confronted a woman once who parked between two EMPTY handicapped spots making both spots worthless to me. I was angry but controlled. I explained to her that doing that was inconsiderate and made the spots unusable to someone like me. She called me "hateful."

People like that don't think about anyone but themselves.
She called you hateful..huh? I would have called her a stupid f...g bitch. I am not very nice sometimes.

[palerider]

I have even come out from a store and found a vehicle parked ON THE LINES (like it's a spot) and completely block access to my van/ramp. If I was traveling alone (which I don't do fortunately) I would be completely trapped and unable to get into my van until the asshole returned and moved their vehicle. When this happens, I have to wait for my husband to move the van so I can get in. It's infuriating and it happens ALL THE TIME.

I hope you call the cops when that happens... or a tow truck

[palerider]

I confronted a woman once who parked between two EMPTY handicapped spots making both spots worthless to me. I was angry but controlled. I explained to her that doing that was inconsiderate and made the spots unusable to someone like me. She called me "hateful."

People like that don't think about anyone but themselves.
She called you hateful..huh? I would have called her a stupid f...g bitch. I am not very nice sometimes.

I've never heard you not be nice without overwhelming provocation.