Questions about air travel with PD

[Joe]

We are going on vacation the end of December, and I will be traveling with my cycler. I have a letter from my center about needing to carry medically necessary supplies and all that stuff. I have coordinated with Baxter to deliver solution to the hotel for the duration of our stay, as well as some extra and a case of 4.25s just in case. My question is: with all the extra supplies I need to carry with me: transfer sets, drain bags, exit site care, etc., I'm going to need a second suitcase just for medical stuff. Am I going to have to pay the onerous extra bag fee for that? I have looked at the carriers web site, and they are silent on medical supplies. If I have to pay the extra fee, so be it, but it would be nice if it got waived.

Thanks

[Riki]

This may be a dumb question, but doesn't baxter supply all the cycler sets, drain bags, and exit site stuff as well?  As for the extra case of dineal, I wouldn't bother with that.  What I would take is a couple of twin bag sets, just in case you do get delayed somewhere, and you'll need to do a few runs to keep you going until you get to your destination.

For me, exit site stuff was simply a handful of 2x2 gauze, an extra wide roll of 3m surgical tape (it has a name, but I don't remember what it is), and a tube of gentamicyn antibiotic cream.  It easily fit into my mother's carry on, as mine was the cycler.  BTW, it fits under the seat on most commercial aircraft.

if those extra things are not going to be necessary during your flight, call your hotel, and ask if they'd be able to receive packages for you before you arrive.  A lot of them will not, so it's best to call and ask first.  If they do, pack those extras up into a box and send them ups or fedex a week to a week and a half before you leave.  The time depends on how far away you're going.  When I was going to NYC from Charlottetown, PEI, I'd send my supplies by ups a week before I left, and they usually arrived the day before I was to arrive.  I paid $90 for 4 relatively heavy boxes, as I sent all my supplies, instead of getting baxter to deliver, so it would probably be a good site cheaper than that extra suitcase.

[Joe]

Riki, for a travel order Baxter only supplies my dialysis solution. I have to bring, or ship, everything else.

[Riki]

I've never had Baxter ship anything for me when I was traveling.  I found it easier to just ship it myself

[fearless]

I was on PD with Baxter.  I would call the place I was staying to get the proper street address and somebody's name, and I would pack up all the drain bags, cassettes, caps, etc. and ship it myself.  If I were going to be staying different places, i would have everything shipped to the first location, then I would usually have a rental car and i would put everything in the trunk.  To have with me i would pack: clamps (including emergency clamp for catheter), small safety scissors (they didn't hassle me about that) alcohol wipes, tape.  I never had any real problems until a couple years ago, when TSA actually hassled me about my abdominal catheter.   They insisted upon seeing it and took me in a room with two female officers - where I had to show them the catheter.  On that same trip I got hassled at every stop about taking the machine on the plane.  They said it was too big, and when I explained what it was and that it had a lithium ion battery in it, which is NOT supposed to be checked, they gave me grief.  Then, the icing on the cake: the guy I was supposed to sit next to actually started hollering loudly at me that i could NOT have that suitcase under the seat!  He kept yelling and wouldn't stop.  i tried to explain what it was to no avail.  Fortunately another gentleman said he would switch seats with the hollerer.

I am a smallish woman - and cannot carry the cycler around without resting it on a little wheely thing.  But I always have to try to carry it down the plane aisle and get it into the overhead (on the bigger planes)  This is very physically difficult for me, especially with the weakened physiology that 8 years of dialysis have wrought.
Being on dialysis is a special kind of disability.  You really don't get accomodation unless you assert yourself.  And you'll always get dirty looks from people who don't understand : that even though you look OK, you're really and truly not.

So, i went off on a tangent there, but i would say just ship the other supplies you need to your intended location. It's cheaper and easier than trying to truck it along with you.  I've always found hotel staff to be incredibly accommodating.  I think they're used to receiving packages for incoming guests.  It feels great when you get there and all your stuff is waiting for you.  And you didn't have to carry it!

Have fun and don't take any crap from the airlines!!! 

Also, I was told at first not to send the cycler through the x-ray.  i got hollered at for that by TSA.  But I found out that it can go through, but they always hand-check it afterwards anyway.  It's just that some of those TSA people feel like they need to scold people for anything that's out of the ordinary.  i think they are constantly on edge and just react badly.  I send them blessings now for peace !

[bevvy5]

We just packed up a box of stuff and sent it ahead.  Just get a contact name where you're going to at the hotel or resort or whatever and send it off and confirm it's there before you leave.

Way easier than schlepping stuff through the airport - you'll already have the cycler and that gets kinda heavy.

[amanda100wilson]

I have traveled multiple times with a PD cycler, on the first occasion  back to the UK with my son who was two at the time, so I had a stroller as well.  I  put my supplies in a suitcase which accomodated not only these,  but also clothes for both of us, and also books and toys.   Last year, my husband, son and myself, travelled to California for a week with just two hand luggage size cases and a small hand luggage size backpack.  Again, these accomodated not only clothes for the three of us but also all my ancillary medical supplies.  Therefore, I think that you are just anxing about nothing, but if you do feel that you need an extra case, you should be able to do so as these items are a medical necessity.  Just make sure that nothing else is packed in there with them since then they may well charge you.  You are entitled to take the cycler as hand luggage in addition to your regular hand luggage.  I always arrange wheelchair assistance, which makes life a lot easier since then you do not need to carry the cycler.  You can expect to be stopped at security while they swab the machine.  Clean it well with alcohol since the presence of iodine from the caps makes it test positive for explosives!

You are entitled to preboard the plane so that it makes it easier to stow the cycler.  You can also request, and by law be provided assistance up the skyway to the plane.  The cabin crew will help you stow the machine as long as you state that the cycler is a medical assistive device.  In fact, at every step of the way, describe it as this, since this is the terminology used in the Disability Act.  As soon as you mention this term, they will jump to help you

[fearless]

I've flown several times during the 8 years I was on PD.  My experience varied widely from one place to another, and from eight years ago until now.  Individuals now working in airports don't necessarily know that they're supposed to be accommodating to people with medical assist devices.  They're often tired and have been harassed by travelers wanting to take aboard suitcases or other things they're not supposed to.  I often got best help by just speaking clearly to all my fellow passengers:  "can someone help me with this dialysis machine?"  There's often a nurse or someone familiar with what that means who will jump to help.  But as for the airline personnel, I can't be encouraging.  I've asked them to stow the machine in the front where my clinic told me there should be room: they've never done that for me.  And they often try to take the machine from me as I'm boarding - saying it should be gate-checked.  Over and over I've had to explain what it is and why it can't be checked.

So, it's do-able, and there are nice people out there who will help (I remember one in SanFrancisco, and two or three in Syracuse) but in my experience, it's gotten more difficult in recent times.

[Joe]

Thanks for all the responses! You all have given me the info I need to go forward. I'll let you know how everything comes out.

[Riki]

You can expect to be stopped at security while they swab the machine.  Clean it well with alcohol since the presence of iodine from the caps makes it test positive for explosives!

Is that what it is???  My mother and I have racked our brains for years trying to figure out why that happened.

We were on our way home from NYC, and were going through security in Halifax, NS, and we were told that the machine tested positive for nitro.  They stopped us, searched me, since the cycler was mine, including a pat down and a check of all pockets.  When they didn't find anything, they let us go, though we almost missed our flight because of it.  We had no idea how nitro go onto the machine. Since we went through LGA with no issues, I thought maybe it had gotten contaminated when it was swabbed there.

[komomai]

Aloha, I'm now on my vacation back in Hawaii.  Traveled from Okinawa to Hawaii via Guam.  What I have done is switch from using my Baxter cycler to doing manual exchanges.  Baxter Japan ordered with my doctor all my supplies and had them delivered to where I was staying.  I traveled with my soft sided warmer with a 2000 ml bag of Extraneal in case I needed to do an exchange while in flight.  I did get stopped in Guam from the TSA looked at my bag of dialysis fluid and asked me if they could swab it as he had never seen something like that before.  Good luck with the airlines and enjoy your trip.
Aloha,
Komomai