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soonerwife

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Lost a loved one
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My PALS and I planned a trip to Colorado.

He is only on the Trilogy at night right now.

He just told me yesterday his breathing took a turn for the worst.

He is worried that he won't be able to breathe when we get to Denver?

I know he could possible use his Trilogy if he couldn't breathe but he isn't doing that now and we aren't set up for that?! We are driving 6 hours to South Dakota from Colorado. Pretty sure the battery on the Trilogy won't last that long.

I'm not sure we are prepared for a trip like this with the new developments?!
 
When we went last October my husband was already using his trilogy all the time. I did up the pressure support to 15 but he did feel like he was working most of the time. We also think he had a bit of a cold. It was work for him but he's glad we went.
 
Going from sea level to our 'mile high' state usually only bothers 'normal' people if they exert themselves.

However, I use a 2lpm O2 flow for overnight. I can go without the O2 without a perceptible difference.

My FVC *% of expected is in the 30's. I can breath unaided when necessary for an hour or more, but it is exhausting. I normally use my trilogy 24/7.
 
Maybe you could borrow or rent a couple of extra Trilogy detachable batteries and a charger to give you more time ?
 
Sooner are you guys vets?
I have two trilogies, one is back- up but really I have one at the bed and one for travel. Thanks to va.
 
No Chally, we aren't vets. The RT said she would bring me another battery but it's still pretty scary since he told me his breathing has taken a turn for the worst this week. UGH!
 
I live at 8500 ft and have an fvc of 23%. I have lived above 6000 feet for almost all of the last 32 years. I don't find the altitude to be a problem.

If I were in your shoes I would get a car charger (inverter) for the trilogy, a backup trilogy battery, and perhaps an appropriately sized computer ups as a last ditch backup.

Steve
 
Definitely get backup battery power for trilogy if you are going. I don't know how bad your husband's breathing is. Aside from the issue of every PALS being different you can't compare Greg and Steve and their numbers to your husband's because their bodies have been adapting to altitude for years. That is why Olympians train at altitude and why Sherpas can do the job they do - adaptation- the latter being genetic and environmental.

Can you discuss with his pulmonary? Does he have any other serious medical issues? Especially heart?
 
As everyone says, bring lots of ways to get power if/when you need it, and they are available.

My only addition would be the possibility that he might need his settings adjusted when there are dramatic altitude changes. Some people do and some don't. It is only a few button presses, but I would know what/how to press just in case. I'm happy to help if you need a cheat sheet. Also, his humidification might need tweaking based on altitude and weather, and since distilled water isn't on every corner in rural areas, definitely bring a gallon in your vehicle.

I wouldn't cancel the trip if he is comfortable with the Trilogy when he needs it. That's what it's there for -- to enable you guys to make the trip.
 
Laurie, if we still go, I will get with you a week or so before the trip for tweaking info. I appreciate you so much!

His breathing #s have been bad for a long time but he just starting using the trilogy maybe 4 months ago.

He has high bp but other than that, no health issues besides ALS,.

We have clinic on June 6th. I am working on getting mouth ventilation for during the day since his breathing has taken a turn for the worst the last few days. Also working on getting a low dose of morphine to help with the anxiety associated with the new breathing issues.
 
We are just returning from Whyoming where Matt experienced aide hunger for the first time. He used the Trilogy more there, and noe thinks he will have to use it while hunting in September. In addition to extra batteries, ask for a charger to use in the car. They have them!
 
Thanks for all the info. Cliff has decided he doesn't want to risk it. His breathing is much worse this week and now his walking is coming to an end. He has gone down 3 times in the last two days. I just asked him to start using his chair. I am afraid I am going to hurt my back lifting him. He is 5'10", I am 5'1" and I tend to have bulging disks at times. Hoyer was asked for a month ago but DME's get in no freaking hurry. Calling for a loner first hing in the morning. UGH!
 
So sorry there is so much progression on both fronts sooner. Please do get that hoyer loaner and make noise about your back to speed it up xx
 
Will be doing first thing in the morning, Tillie! Thank you!
 
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