Be Prepared When You Fly with a Dialysis Machine

This blog post was made by Lana Schmidt on October 30, 2014.
Be Prepared When You Fly with a Dialysis Machine

The law is clear that people traveling on an airplane with a portable dialysis device such as a PD cycler or NxStage hemodialysis machine should not encounter any difficulties. However, problems still happen, so be prepared. The intent of the DOT regulations, Guidance on the Transport of Portable Dialysis Machines by Travelers with Disabilities is to remind airlines of their obligations and inform people with disabilities of their rights regarding the use and transport of portable dialysis machines.

Heading to the AAKP meeting in Las Vegas, I booked a flight from Quincy, IL to St. Louis, MO for travel on Thursday, September 25, 2014 with Cape Air, a commuter airline with small planes. I contacted the corporate office in advance to explain that I would be taking my dialysis machine on the plane. The NxStage machine in its travel case weighs 100lbs, and Cape Air had taken it before. Their representative checked with someone and said, “ Yes it would be ok to take,” and we discussed the weight and size of the machine and how it would work. The representative contacted the Quincy Airport staff to let them know the machine would be on the flight. They stowed the machine in the back of the cabin and all went well with the flight from Quincy to St. Louis.

Unfortunately, before I headed home on Friday, September 26, 2014,I received a phone call from Cape Air customer service stating that they would not be taking my dialysis machine on my return flight because it did not meet their weight regulations of 70lbs!

I had to leave the meeting to take her call because I was very upset, shaking, and feeling as though my life was being threatened. After some heated discussion I said, “ You cannot leave a disabled women standing in the middle of the St. Louis Airport with a dialysis machine—a treatment I need every day to stay alive—with nowhere to go! ” She said she would get back to me.

Luckily, I had the Disability Hotline number with me . The hotline staff was also upset on my behalf, because an airline cannot change travel arrangements they had already agreed to while a passenger is en route. Within a short time, Cape Air called me and said they would “make an exception this time” and take my machine on their return flight because they rearranged some of their inventory, but “would not be able to do it again.”

When I arrived in St. Louis at the Cape Air ticket counter, the man complained that Cape Air should not be taking my machine and they had to vacate seats for it, etc… He would not take the machine as a checked bag at the ticket counter, as it had been done before. Instead, I had to go through TSA especially for the machine, a TSA manager had to be called, and it turned into a big deal that took 90 minutes. After I got home and shared my story, NxStage, suggested that I file a complaint with the Department of Transportation.

As it turned out, taking the machine on the flight did not even seem to affect Cape Air’s ability to carry a full plane of passengers:

  • The flight from Quincy, IL to St. Louis had 6 passengers plus a pilot: 7 people.
  • The flight from St. Louis to Quincy, IL had 7 passengers plus 2 pilots: 9 people.
  • They stowed my machine in the back of the plane on the floor—and it weighed less than a normal sized adult.

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.

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. Measure a PD cycler’s case to see if it will fit in an overhead bin or under the seat. If not, it will need to go as checked baggage.
  5. The NxStage System One is too large to fit in the airplane cabin and can only go as checked luggage.
  6. 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…
  7. Ask the hotel if they will waive the fee for accepting and storing boxes with medical supplies.
  8. Ask the hotel ahead of time for a bathroom scale. Many have them, so you don’t have to take one with you.
  9. 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.
  10. Hotel personnel can also help with lifting and setting up the machine.

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.

References

“US Department of Transportation (DOT) document which was designed to implement the Air Carrier Access Act of 1986. This 16 page document (14 CFR Part 382) outlines “Nondiscrimination on the Basis of Disability in Air Travel”. http://airconsumer.dot.gov/rules/382short.pdf

“Guidance on the Transport of Portable Dialysis Machines by Travelers with Disabilities”. http://www.dot.gov/airconsumer/notice-portable-dialysis-machine

NxStage http://www.nxstage.com/homehemodialysis/products/travel

Comments

  • Rick

    Nov 07, 2024 6:41 PM

    My wifes machine was swabbed and tested positive, had to undergo additional screening. Why would the machine test positive; cleaning products, dialysate, machine parts?

    What rights does a patient have when TSA says they either have to dismantle your machine in the middle of airport terminal, or run it thru the XRay machine.

    btw, her machine no longer works after being run thru XRay. FYI, beware.
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  • J

    Oct 23, 2022 6:48 PM

    My mom is on PD everytime we travel I make sure that I have a letter from her nephrologist to show the security at the airport and a supporting document from baxter. The security will swab the machine and the carrying case and they will ask you to open it. Some airlines will let you carry the machine inside the airplane and put it on the over head bin (be very careful putting it on the over head bin, it is heavy) or if not you have to leave it by the door before you board the plane. I would recommend putting a FRAGILE sticker on the hard case of the machine. Regarding her supplies I call Baxter 4 weeks or more before our flight and get it delivered to our hotel.

    FYI if the staff at the airport gives you a hard time just ask for their superior and show them all your supporting documents. I hope this help.
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  • Rhonda Stratton

    Aug 04, 2021 5:04 PM

    My question is about getting through airport security (TSA) with the machine. My mom does peritoneal dialysis, and she and my dad get raked over the coals every time they fly. The worst was yesterday, going through security at the Billings, MT airport on our way home to DFW. It was insane; my mom was patted down, my dad's hands were swabbed, and more. If we hadn't been extremely early for our flight, we surely would have missed it. I'm going to find out what machine she uses for more specific ideas about carrying it on. We were on a smaller plane and also had issues with a surly flight attendant about where it could sit on the plane. So humiliating and frustrating!
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    • Rick

      Nov 07, 2024 5:42 PM

      We had the same experience with even more problems, they opened the nxStage crate, swabbed the machine, it came up positive. They refused to let my wife thru unless they disassembled the machine or run it thru the XRay machine. We had to choose XRay machine, not going to let unqualified people take it apart in the middle of airport terminal. After running thru the XRay, Dialysis machine no longer powers on. DO NOT LET THEM XRAY. TSA looked completely unprepared and unqualified for this situation. TSA even initially refused to let her thru security. Government bureaucrats are worthless, untrained and clueless. No one at the check-point was capable of solving this problem they only made it worse.

      PS: they also did a full pat down for 15 mins with her standing there in the middle of security check point. We arrived 3 hours early, good thing we did.

      PPS: This forum is very helpful, but nothing is mentioned about what to do if you machine tests positive for banned substances. What are your rights, who can you call, what options are there besides deconstruction or XRAY. More information please.
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  • Ken

    Dec 27, 2019 12:06 PM

    Wish I had the DOT number before our trip with United Airlines. United Airlines refused to gate check or carry on the dialysis machine even though I called before the flight and was told I could. This happened on both flights of the trip and both times the machine was damaged and had to be replaced. United Airlines refused to even look at the letter explaining the need for carry on or gate checking. Consider yourself warned about flying United Airlines.

    The best airline is Southwest where, on our first trip with the machine, the manager reassured us he would make sure we had no problems then personally walked with us to the gate and made sure our machine was handled properly. The people at check in read the letter and empathized with us and as they were not familiar with the situation, called over the manager who said "we can do that". Southwest airlines is the airline with a heart and it is not just a slogan, they mean it and they put those words into action. Southwest is the airline to fly with.
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  • Brenda Rawson

    Aug 06, 2015 6:21 PM

    I have been using the Baxter HomeChoice peritoneal dialyzer for past 6 months. I would love to plan some trips that involved flying.

    Will I be allowed to store this machine stored in a rolling case inside a plane? I,am not comfortable with being forced to put it in checked baggage. The reimbursement I have read of for damaged kidney dialysis machines is a fraction of what I would have to pay Baxter for repairs or another machine. Even more terrifying is that I must use this machine every night while sleeping. I will die from toxic fluid buildup w/o daily use of this machine.

    If it is damaged or lost I am in peril waiting on a resolution.

    I need an answer to this b4 I ever attempt to fly again.
    These machines can't be bought at WalMart or even medical supply stores. They must be ordered from Baxter & approved by Medicare!
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    • manny

      Feb 11, 2019 8:58 AM

      I've been travelling internationally while on PD last 4 yrs. I don't go more than a week at the most, I take 3 days worth of dialystate with me as hand luggage and I alternate my treatments to stretch it for 6 days, The machine and the supplies stay with me in overhead compartments. The only issue has been security, my supplies get flagged for additional tests all the time so plan for more time at the security line. Have had issues taking big bottle of the sanitizer they sometime as you to open it up so they can check the vapors, make sure they are just hold a stick above the bottle and not putting anything that can contaminate it. So far not much issues, sometimes they may not allow you to take more than 2 pieces of luggage, have had to fight my way through during those times and put my foot down to take the medical suppliers 2 days worth of supplies, they can't say no. I come back home and catch up on missed treatments to bring the fluid levels down, also I'm careful on the amount of fluid intake as I'm alternating my treatment days. Go ahead and plan your next trip and live your life to the fullest , being on dialysis shouldn't stop you, its so liberating to travel and live life as normal as possible.
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      • Michael Alan Barnes

        Apr 30, 2021 4:34 PM

        What type of machine do you have? I doubt my baxter cycler would fit in an overhead bin.
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      • leeann shaw

        Sep 27, 2020 9:17 PM

        Hi Manny I just read your article regarding flying and PD
        I was told that my circlular machine can go overhead and my
        Peritoneal Dialysis Solution 12 lb bag needing to take 3 bags that I can put them in a suite case and check it and it will go under the plan what are your thoughts and experiences with your traveling with PD and machine and do I need a Letter from my doctor? Thank you for your input
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  • Lin thompson

    Nov 05, 2014 4:07 AM

    Interesting article.
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