Air travel on peritoneal dialysis

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While I've now spent about five years on both hemo and peritoneal dialysis, my air travel while on peritoneal dialysis has been limited. I made a trip to visit my sister in Michigan years ago, when I was first on hemo, but that's really about it. Travel on hemo is pretty straightforward; your home dialysis clinic has a travel coordinator who will find you a clinic at or near your destination, and get you scheduled for your treatments while you're there.

Peritoneal dialysis, because I'm the one in charge of the specific schedule and everything, is pretty different. I've got my machine, and the supplies that I'll need for the duration of my trip. I need to carry my machine with me, along with a few backup manual exchange supplies, and have the supplies for the rest of my trip shipped to my destination.

We're going to be gone for about a week, so the supplies are many; I'll need 9 large boxes and 3 small ones of solution, plus my tubing materials and the other things needed for set up. (Masks, hand sanitizer, catheter caps, that kind of stuff)

My PD clinic has a suitcase that I can borrow for the machine itself, so I'll hand-carry that through security and then gate check it onto the plane. While it's possible to check it like a regular suitcase, I don't want to run the risk of loss or damage, and I'm legally allowed to bring it to the gate with me to make sure it gets on the plane safely.

Air Travel on Peritoneal Dialysis

In an effort to make this as easy as possible, here's how I'm preparing:

• Arrive early at the airport. We already have a very early flight, so security (hopefully) won't be jammed up, but it's also a holiday weekend so it will be much busier than usual. We'll arrive in plenty of time for the TSA to examine my machine and whatever else is in there with it.
• Check a bag with tubing and syringes. I'll check a suitcase with the easy to replace stuff and anything that might cause any alarm. I'll only need a couple of syringes in case I need to add heparin (blood thinner) to my bags, and it's just easier to add the tubing to a suitcase instead of carrying it on-board with me.
• Get a doctor's note. I'm going to bring a note from my nephrology clinic that explains my need for the machine and supplies, and describes my catheter, just to be safe. I'm hoping I won't need it, but I'd rather have it and not need it, than wish I had it.
• Print out my rights in advance. I've got a hard copy of this document, titled “Guidance on the Transport of Portable Dialysis Machines by Travelers with Disabilities” which I'll put inside the suitcase with my machine, and I've also got it bookmarked on my phone.
• Make advance arrangements with our hotel. I called a few weeks in advance, to make sure they would be able to accept delivery, and to find out what other information they or I might need. I'll follow up more once we've gotten there and seen how it all went.

I'll update this post after we get home, in case I learn anything else while actually going through the process. I'm hoping that I end up being over-prepared and it's all a breeze, but we'll see what happens!

Federal Regulations you should know

Know your rights when you travel with a portable dialysis machine:

• Airlines are not allowed to charge you for the portable dialysis device as additional baggage.
• They are not allowed to ask you to sign a waiver for loss, damage or liability. If something happens to the machine they are responsible for replacing it.

Guidance on the Transport of Portable Dialysis Machines by Travelers with Disabilities

The Air Carrier Access Act (ACAA) of 1990 says that airlines can’t discriminate against people with disabilities on U.S. and foreign flights. The U.S. Dept. of Transportation (DOT) has rules under the ACAA to help people with disabilities travel by air especially those traveling with an assistive device such as a portable dialysis machine.

Download this PDF, and/or bookmark this link on your phone: Code of Federal Regulations, Title 14, Chapter II, Subchapter D, Part 382: Non-Discrimination on the basis of disability in air travel.

Some tips for flying with a portable dialysis machine from a Life@Home article on Home Dialysis Central:

1. Ask the airline if they have a Disability or Special Assistance Coordinator when booking your flights, and make this person aware of the portable dialysis machine.
2. Be prepared and take information with you about traveling with a portable device in case you run into trouble. Many airline staff do not know these regulations and have never seen a portable dialysis machine.
3. Call the DOT Disability Hotline at 800-778-4838 (voice) or 800-455-9880 (TTY) if you have problems.
4. Box up and mail your additional medical supplies ahead of time or pack all supplies and medications in your carry-on. If you do this, it is wise to have a note from your doctor giving you permission to travel with needles, etc.
5. Ask the hotel if they will waive the fee for accepting and storing boxes with medical supplies.
6. Ask the hotel ahead of time for a bathroom scale. Many have them, so you don’t have to take one with you.
7. If you don’t plan on handling the device yourself and will be relying on airline, taxi and hotel personnel to help with it, have cash on hand to tip them. Plan to tip $5-10 for your machine plus $2 per box.
8. Hotel personnel can also help with lifting and setting up the machine.

The Real Life Experience & Lessons Learned

We're home from our adventure, and I'm thrilled to report that the dialysis side of things was mostly uneventful. Notice I said “mostly”

We got to the airport very early, about 2.5 hours before our departure time. If there were issues, I didn't want them to be because we were late, so I erred on the side of ridiculously early.

We rolled the suitcase through security with no real issues. I was surprised to find that it actually fit easily through the x-ray machine, but we did have to lift it onto the belt to get it into the x-ray, so keep that in mind. I had my husband there, but I'm not sure how much assistance the TSA might be able to provide.

Update! My friend Christina, who blogs her way through chronic illness and special needs at Well in this House, shared this helpful info on Facebook: “If you have to travel alone with your dialysis equipment, request wheelchair service at the airport when booking your flights. You will have an employee dedicated to helping you with everything. Since you have extra equipment, it would help to call the airport in advance to let them know about the medical equipment you'll be carrying on in case you need a second employee to help with that. I didn't have to do anything myself when I flew to DC with wheelchair service. My aide helped me get my laptop in and out of my backpack at security and even offered to help me take off my shoes.”

Once we got to the gate, I approached the agent to gate check my machine. He tagged it for our destination, and told me that it would be at baggage claim when we arrived in Orlando. I told that this wasn't going to work, because it's a medical device, and I simply didn't want to trust it to the baggage claim system. He then tagged it for “Claim at Gate” by attaching a green tag to the handle, and we were on our way.

Here's where the biggest concern of the trip happened: Procedurally, all gate checked luggage is sent to baggage claim. The only things returned to the gate are strollers, wheelchairs at the like. Not luggage. Because this is my dialysis machine and not luggage, it's eligible to be treated like those things, BUT the fact is it looks like luggage because it's a giant suitcase.

The baggage handlers don't necessarily look at the tags, and may or may not see that a suitcase is tagged Claim at Gate, and send it to baggage claim.

Once we got to Orlando, it was about 15 minutes of them not knowing where my machine was, and then they told us they found it, only to bring up Jamie's suitcase (which we had checked) and still no dialysis machine. I eventually turned up at baggage claim, but it was pretty hairy for a few minutes there.

Next time I have to travel with machine, I'll get some green painters masking tape and put my own “CLAIM AT GATE” labels on every side of the suitcase, to increase the chances of it being returned where it's supposed to be.

At the hotel end, everything was totally seamless; they even let us keep the bell cart loaded with my supplies in our room, so we had one less time to move everything around. Protip: Bring your own trash bags! My clinic recommends opaque trash bags to help keep people from worrying about what's in those trash bags, so we had a couple extra in my suitcase to throw everything away.

When we returned home to Oakland, they managed to bring it back up to the gate as we wanted, so that was great. The baggage handler that Jamie spoke to made a suggestion as well, that we snap a pic of the bag so we can refer to it and let the baggage handlers know what they're looking for exactly (since all I could say was “A big black Samsonite suitcase,” which isn't super helpful.)

Overall, the travel was pretty easy, and I think that leaving plenty of time is probably the biggest single tip I've got.