Traveling to Colorado - air issues

[rebeccaspooner]

My husband was diagnosed with ALS on December 1st and is already using Trilogy at night to help with breathing. We are traveling to Colorado and plan to spend some time in Breckinridge. We live in Arkansas are not used to high altitudes. Does anyone have any suggestions about my husband's breathing and dealing with high altitudes?
Thank you!

 

[lgelb]

Hi Rebecca,

First, welcome to the dubious honor of our club. Sorry you are here...

If the Trilogy has a "target volume" set, it will adjust the pressure so that your husband gets enough flow in Colorado, within the pressure limits set. But those limits need to be realistic.

If it is only set to deliver a certain pressure, the settings should be adjusted before you go.

I will PM you my email so we can talk about the current settings and how to adjust them if needed.

I am sure you will have a great trip!

Best,
Laurie

 

[rebeccaspooner]

Hey Laurie,
I just sent you an e-mail. I will have him talk to the tech at the Trilogy place about changing his settings.
Super helpful!
Thank you,
Rebecca

 

[GregK]

If you're coming from low lands to our altitude, both you and your husband may suffer from our thin air.

Where are you coming from (elevation) and have you been "over a mile high" previously? And if so, how did it feel then?

 

[swalker]

I think visiting Colorado is a great idea! I like it so much that we moved here over 30 years ago.

Breckenridge is at a high elevation of 9,600 feet above sea level. That is even 1,100 feet higher than we live in Vail. Ordinary folks that come to Breckenridge from sea level will notice their body's inability to get enough oxygen. It usually takes several days to start to acclimate and some medical professionals I have talked to suggest it takes up to 6 months to fully acclimate. As you acclimate, your body changes the mixture of blood cells and you develop the ability to extract the oxygen from the thin air and get it to the body parts that need it.

Because of this, some folks use supplemental oxygen when visiting high alititudes. You might want to contact your pulmonology folks to see if supplemental oxygen is indicated for your stay in Breckenridge.

Even though oxygen is usually not appropriate for MND/ALS patients, I am on 2 liters per minute at night because I live at 8,500 feet above sea level.

I encourage you both to take it easy for the first few days at altitude. After that, you will be able to do more without getting so breathless.

Steve

 

[GregK]

I concur with Steve. I live a bit lower in Colorado Springs but see the same problems with 'flat landers'.

I was going to wait on more detail before venturing forth with the controversial subject of added oxygen, but as its now been broached, agree.

I, too, use 2 lpm (litres per minute), at night only (this varies by person).

A "normal" person can tolerate 2lpm with no problems.
pALS can too, BUT it must be accompanied by BiPAP (or simular) ventilation.

As briefly as he might be using O2, the ventilation might be unnecessary, but to be sure...

I bleed mine directly into my mask tubing (ok, actually the humidifier) via a simple "T" fitting.

 

[rebeccaspooner]

We have been in high altitude before and were not bothered by it. But not that his breathing is slightly compromised I didn't know if he would struggle. I have been told that he does not need oxygen that it could cause problems. He uses Trilogy at night and may need to use it during the day.

 

[rebeccaspooner]

Super helpful! Thank you.

 

[Nuts]

Rebecca, my husband and I made that trip in September (well, over the mountain and on to the other side to Grand Junction), and we had to take oxygen along. He had done it the year before with no problem, but a trip to Wyoming in the spring had given him his first experience with air hunger, so we checked with his pulmonologist. The man was a marvel. He arranged for Matt to go into the hyperbaric chamber at Duke, where they set took him up to the altitudes we would encounter going through the pass and hunting on the Grand Mesa. Based on what we learned, he perscribed oxygen and educated me on when I would need to start giving it to him and how much. We made the trip (our last one, I'm afraid) safely.

Again, we'd don't it before with just the Trilogy, but things had progressed to the point that he couldn't handle the altitude without adding anywhere from 2 to 4 liters of 02, depending on altitude. Note that this is ALWAYS with the Trilogy.

Enjoy the trip and travel as much as you can while you can!

Becky