Altitude, travel suggestions?

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cbiedron

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Joined
Apr 10, 2020
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14
Reason
Lost a loved one
Diagnosis
04/2020
Country
US
State
NJ
City
Bedminster
Greetings everyone. My sweet husband and I are flying to Denver for a week. Prior to his diagnosis, we purchased a piece of property at 9,000 feet and began building our dream retirement house there. It is our favorite place and I know the trip will be challenging but I think it will be good for him to relax and see the mountains again. I have seen several posts about altitude and breathing (he is on bipap and PFT 60% of predicted) but couldn't find any feedback about how the trip went. He has bulbar onset and still gets around okay. If anyone has suggestions or thoughts about altitude and breathing, navigating airports, and comfort on an airplane I would be so grateful. Thank you!
 
I don't know how much help this will be but...

We live in Vail, Colorado. Our house is at 8,530 ft. I regularly make the trip to Frisco and Dillon, which are about 9,000 ft. Most days in the summer I go on wheelchair rides that take me over 9,500 feet.

My FVC runs around 18%. Due to the high altitude, I use supplemental oxygen and am carefully monitored to make sure I am not building up CO2.

What might be different for me is that I have lived in Vail for over 20 years, having moved here long before I was diagnosed. I am well acclimated to the high altitude.

Be aware that Colorado was an early hot spot for Covid 19. My county was one of the earliest in Colorado. Things are going OK now, but the number of folks affected is creeping up, presumably because of relaxing the shutdown we had earlier.

Let me know if you would like more information regarding your trip to Colorado. I would be glad to share what I know.

Steve
 
Thank you Steve! I appreciate this. It is our favorite place and before he was diagnosed he had no trouble with altitude. He is worried now and wants to postpone the trip.
 
Depending on your machine, some adjustments to settings (usually higher) may be desirable when you get to higher altitude. You may need a medical equipment tag for the carrying case, which you can get from CPAP stores, to not have it count against your bag limit.

Does he only use the BiPAP at night? Since you'll be on a pretty long flight, if he ever needs it during the day, I'd have a doctor's note and power connections or charged battery to use it on the plane if he needs it.
 
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My husband and I traveled to Colorado every year that he was sick, and eventually we had to take oxygen. He had trouble one a trip to Wyoming, and his pulmonologist told him that another trip over the Rockies and staying in Grand Junction could kill him. The folks at Duke are always looking to trying something new, so in the research mode they put him in a hyperbaric chamber and dialed the pressure down while adjusting his oxygen (he was on a bipap with no oxygen before the trip). They ordered the oxygen and gave me instructions on how much to give at each elevation we would experience. We made the trip in the van with the Trilogy, oxygen concentrator, and bottles of oxygen. You won't know until you reach a new altitude how he is going to handle it, so your best bet is to be prepared for anything.

Oh, and Steve has been and still is one of my heroes!!!
 
You asked about flying. I don't know if a power wheelchair is involved, but I will share my experience.

I had to take two trips in the January/February timeframe. On 3 out of the 4 legs, my wheelchair was damaged. Cumulatively across those flights, the Permobil C500 needed a new shroud, backrest cushion and shell, Roho seat cushion, left arm rest, a few trim pieces, and motors.

The really did a lot of damage to the wheelchair, even though I coached them on how to handle it and showed them how to prepare it for travelling in the cargo hold.

It has been over 5 months and the wheelchair is still not completely repaired. We are hopefully getting close, but are still waiting on the new motor/gearbox/brake assemblies.

If you travel with a power wheelchair, be aware that it could be badly damaged and might need many months to get it repaired. I have read of cases where the wheelchair is not even useable after the flight. Mine was, which was fortunate. Note, I always travel with a Roho pump, so we were able to add air to the Roho cushion to make up for what was lost through the slow leak caused by the airline.

When flying, I sat in a regular seat. I used to fly extensively for business, but this was the first time I had been on an airplane since shortly after diagnosis. I had not realized just how hard those seats were! My bottom has lost a lot of its natural padding. I should have taken the Roho cushion in the cabin with me and sat on it.

There was an awful lot of waiting in the airports and I was glad to be able to sit in my wheelchair, as the chairs in the various gate areas do not offer much in the way of upper body support.

The airline staff was amazing. I was always the first to board (along with my wife). We had plenty of time to get me into the seat and settled in.

We arrived at the airport quite early, per the airline's instructions. After booking, I went to the airline's web site and filled out a form about my special needs. They took really good care of me, but not such good care of my wheelchair.

Steve
 
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