Flying and PEG Tube and BiPap

[julez]

Hi,

Mom has Bulbar onset ALS. She can no longer eat solids and is only eating liquids/pudding consistency. Her family (brothers/sisters/neices/nephews) mostly live in a small town Wisconsin, and it's just my dad and I and her here in Houston. I'd like her to be able to make a trip up to Wisconsin to see all of her family if she can. Dad and I work full time so she's home alone and it makes her sad...her family in Wisconsin does not work (most of the women are stay at home or retired, etc) so they can spend time with her. Right now she does not have the PEG tube, so I know she does not have the weight/strength to make this long journey. I'm wondering if/when she gets the tube, and hopefully gains some weight back, do you think she can make this journey? I know it would take a good 7+ hours (drive 1 hour to airport, wait at least 1 hour, possibly 2 hours at airport, fly 4 hours to Milwaukee/Chicago, etc, wait for a connection, fly on small plane...or maybe she won't make the connection and someone can pick her up and drive 4 hours....)

Regardless of the path, it's a long journey. There are restrictions on liquids you can bring. I know for children and medication you can bring beyond the amount of liquid, but I'm not sure if she can bring bottles and bottles of ensure (or whatever liquids she needs) to be fed through the PEG tube. not sure about restrictions on that end. she might get a biPap too...is this transportable thru airplanes?

So I guess the question is, has any of ya'll traveled and been able to have adequate nutrition even during an approximately 8 hour plane ride (well travel time plus plane time). Or is this too much of an obstacle? If this trip can be an ease for her, then maybe we can take her to see her family. but if it is too difficult, then we shouldnt' or she'll be in discomfort. She is so happy when she is around them...

Thanks

Kim

 

[BarryG]

Good question Kim,

I have a peg tube and we were going to fly out east this summer to visit family but with the logistics involved we decided not to go. It would have been all day (at least 8 - 10 hrs with car, airport and flying time) and with restrictions on carrying liquids and difficulties of finding somewhere to feed myself I didn't think that I wanted to deal with it. I know any more than a few hours away from home and I'm not comfortable because I have to take things that I can eat. And then if I do eat anything I have to find somewhere to clean out my mouth, not a fun thing in a public washroom.

So I am interested in finding out what others on the forum think. I am not trying to talk you out of having your mom visit her family but is there any way that some of them can visit her? I know that it is not the same but it might be easier on your mom than her travelling.

All the best

Barry

 

[danjay]

Folks - my big adventure was a trip this spring to France with bipap and peg tube. I did two things that made it possible. First, I
had someone fly with me so they could help me with food. The security folks had no problem with my six cans of ensure. A letter
from your doctor will help but for me just showing them my peg tube was enough. They are good folks. The French security, they
were nastier but it still worked. I have flown with my bipap often now. You should carry it on and check it through just like a
laptop. Take it out, they will know what it is, and they will examine it. To use it on the plane, as I needed to in order to sleep,
I arranged to fly business class. This was a work trip so I had to get permission to spend that much. In business class there
are power outlets and with a converter I could run my bipap. There are battery packs but this is a problem again for security.
For shorter flights, where I don't need to sleep, I don't worry about this. Just tell the flight attendants what is going on. They
will be infinitely helpful.

Of course the biggest problem is the uncertainty and anxiety of not being sure what is going to happen, what the security folks
will say, will you just get too exhausted, will your flight be delayed and you get stuck somewhere. I had a flight cancelled
on me just two weeks ago, with them wanting to have me wait 6 hours for the next flight. I explained my situation and
they got me on another airline's flight within 30 minutes. I am sure it won't always be that way but folks are very ready
to help so always explain your situation and ask for help.

Oh, another suggestion. I can walk fine but I always ask for a wheelchair, it gives another set of hands to help out
at security, and the wheel chair pusher also knows exactly what to expect, where to go, where the elevators are, and they go
to the head of the line.

On this France trip I fed myself just where ever I could find a reasonably quiet spot. As I say, I traveled with a colleague to this conference and he helped feed me. Nobody seemed to notice or care.

That's been my experience. Traveling is hard and you have to make your own call on whether it is worth the effort.
Each of us has our own unique problems to cope with and figuring out how to manage them can be very difficult. I
know every time I have traveled in the past couple years I have sworn that it was the last time.
Dan

 

[BarryG]

Thanks Dan! I appreciate hearing about your flying experience. I like flying but now I'd rather drive as I can go at my own pace (wouldn't work for going to France though).

 

[julez]

danjay and BarryG, thanks for your input. Of course either myself or dad would travel with her. Still not sure if she would want to go. Unfortunately it's not a nonstop flight...never will be. I guess we will have to see. Her family has been visiting her a week here and there, but I was hoping she could go up there for a long time...I think it would make her happier. But I don't think she think she can make it, so I guess we have to see after the PEG and see how she feels.

 

[joelc]

Have you considered driving? I know it is about 1200 miles but if you took 2 or 3 days it might be easier than the stress of flying.

Once she has her PEG and starts gaining weight she should have no problem making this trip. I made many like this with my PEG and Bipap.

 

[Al]

go to Mike's page and check his travel tips. Worth the read.

http://mikebougher.com/

AL.

 

[julez]

Glad to hear that we could take a lot of Ensures if we needed to.

 

[mare]

On the als-mda.org website there is an article about new regulations re: traveling with respiratory equipment.

 

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I just heard a presentation at our ALS support group about an organization called Flying Wheels Travel. They are based in Minnesota, but can help plan trips with specific special needs in mind. You can check out their web site at www.flyingwheelstravel.com. I hope your mom can see her family soon.