Caveat Emptor When Traveling + Dialysis

A current “Fellow Traveller” to this blog recently traveled via air from his residence in North Carolina to Houston, Texas. This is what he informed me via email about his trip:

“Made it to Texas. Airline handled our cycler and a suitcase of supplies for free without even looking at letter Doctor had written. Put priority tag on them. Got to hotel about 8pm. … Hotel said our boxes had arrived. When we went through them found no cassettes. Called our hot line number they said nothing we could do about it then. To call first thing in morning. Called and found out the cassettes were back ordered. They are suppose to be here by 10am. So I had my first night since July 2023 without dialysis.”

In a follow-up email, he provided the following details:

“United out of Raleigh to Houston. I found them extremely helpful. I have to have a wheelchair to get through airports due to my breathing problem. They were really helpful also (assume he means airport people.)”

What can/should we learn from his recent traveling experience(s)?

1. It appears airlines and airports are sympathetic to medical equipment users in that they flew his cycler (recall it is housed for travel in a huge suitcase-type container) and a separate container of related supplies. However, this is to be expected actually. In 2022, the US Department of Transportation (DOT) issued the following Bill of Rights for Disabled Travelers: “The bill of rights includes the following: the right to be treated with dignity and respect, the right to receive information about services and aircraft capabilities and limitations, the right to receive information in an accessible format, the right to accessible airport facilities, the right to assistance at airports, the right to assistance on the aircraft, the right to travel with an assistive device or service dog, the right to receive seating accommodations, the right to accessible aircraft features, and the right to resolution of a disability-related issue.”
2. Note the Bill of Rights includes “the right to travel with an assistive device.” The Fresenius Liberty Cycler is an assistive device that replaces normal kidney function when in use, so it broadly falls under this directive IMHO.
3. Despite “doing everything right,” a major snafu still precluded dialysis treatment. It is totally not fathomable by me how Fresenius could have something as central and critical to peritoneal dialysis as cassettes not being available and, further, that they seem cavalier about providing same to a patient. Having said this, the cassettes were delivered the next day, so he lost but a day of treatment. This could still adversely affect his next wKt/V readings (am I getting enough dialysis?).

As I recently discussed in this blog, my wife and I recently traveled to Indiana from our home in Granbury, Texas, and elected to drive the 2000-mile round trip journey to preclude this very thing. It cost more and certainly took more time, and was potentially more dangerous, but all our dialysis supplies arrived with us. Take your pick.