This is the trip that started me on extensive travel while on dialysis. The following is an article I wrote for Nephrology News & Issues, it was published in March 1997. It was going on this trip that informs the First Agenda Item, the initial purpose of this blog. This trip kicked off 10 straight years of European and world travel - well over 100 dialysis treatments in 21 countries.
Read the whole article after the jump
From Amsterdam to Paris, Seattle ESRD Patient Experiences Culture Abroad
For six years I have scheduled in-center hemodialysis as part of golf vacations, long weekends, road trips, and assorted adventures. I do not let my end-stage renal disease determine the trips I take; I leave that to whim and opportunity. When the opportunity to travel abroad presented itself, my whim selected Europe.
On May 10, 1996 I left on an eight-week tour. In all I would visit eight countries of central and coastal Europe. I hopped night trains to Munich and the Metro to Versailles. I hiked in the Swiss Alps, and drove the Autobahn in Germany. I dined on linen draped tables in Carcassonne, while in Austria I picnicked in an alpine meadow. I saw the ancient and the new. I enjoyed myself from beginning to end.
I also had 23 dialysis treatments, from rural towns in Germany to center city Paris. They had to be coordinated as well with some planning.
Preparing for the Trip
I started putting the details together on my trip in January. The first step was to talk to Cheryl, the travel coordinator at my home dialysis unit. She gave me phone numbers for units in Europe and after I set up the appointments, Cheryl made sure each unit had the paperwork that they wanted. I used AT&T's translation service to set up my appointments. (Travel Tip: If I were doing it over, I would have sent more FAXES and made fewer phone calls. AT&T's translation service charges add up quick). I called each unit three times. I called the first time (end of January) for general information, the second time (early March) to schedule dates and times, and the last time (end of April) to make sure my paper work was in order. I also talked to my insurance provider and made sure I understood the details of being reimbursed. Unlike Medicare, which only covers dialysis in the continental United States, my insurance coverage as a union carpenter for GES Exhibition Services covers the cost for dialysis wherever I go.
The cost for dialysis treatments while traveling in Europe ranged from $354 in Germany to $447 in Paris. Over the eight-week trip, I spent about $9,000 in dialysis treatments. My erythropoietin prescription was followed at each facility. (Travel Tip:Let the facility know that you are paying for the dialysis. You may get a better rate).
From the start I used Rick Steves " . . . Through the Backdoor" travel guides to decide where to go, what to see, what to do, and how to do it. His books describe the traveler I want to be and the attitude I want to have. With a little planning, dialysis will not interfere with taking the sort of trip he describes in his books and on his PBS travel series. Instead of thinking of dialysis as an inconvenience, I came to see dialysis as a "Backdoor." Through this backdoor I saw a side of Europe not open to most travelers.
The Trip Begins
I arrived in Amsterdam with my Eurorail pass (nine days train travel and five days of car travel), one bag (it has straps so it can be carried like a pack), twenty-three dialysis appointments (at six units in four countries) and modest expectations. I had no hotel reservations but a friend in Germany was expecting me in a week. I started the trip by myself. If I am given the choice between going alone or not going, I will choose to travel alone every time. I used my dialysis cities as bases and made day or weekend trips to other destinations. Using Straubing as a base, I visited Bavarian Castles and spent a weekend in Prague. I traveled for four weeks, wandering Europe and following the advice of Rick Steves. I visited the Netherlands, Germany, the Czech Republic, Italy, Switzerland, and France. It was as fun as Rick said it would be and three times a week I'd visit my own European backdoor.
To start week five, I met my mother in Paris and we toured France from Dijon to Carcassonne. After a week, my girlfriend Theresa joined us. In Paris, Rick Steves endorses staying in the Rue Cler neighborhood, which is perfect for dialysis. A self-care unit is within easy walking distance. The local patients set-up their own machines but the set-up was done for me. While I dialyzed, my mom and/or Teresa could enjoy five hours of doing as they please, napping, trip planning, or shopping. Traveling can be an intense experience. I am not used to being around someone 24 hours a day, weeks on end, and neither was Theresa or my mother. Dialysis provided a regular opportunity to take a break from each other and gain perspective.
After Paris, Teresa and I spent 17 days winding our way back to Amsterdam. We used the same base cities for dialysis but did different things between treatments. We stayed in Gimmelwald instead of Interlaken; Venice instead of Verona; a weekend in Austria rather than a visit to Prague.
Experiencing the Culture in the Dialysis Chair
Going into a dialysis unit for treatments in a foreign land was a perfect opportunity to interact with the locals. I enjoyed watching the activity of each unit, noting the similarities and differences between them, and comparing them with dialysis in the U.S. All the units I visited followed my medical charts. Their machines could not always run at my high pump speed but they would run me as fast as possible. At each unit I asked what their treatment standards were and learned American standards are not universal. While I dialyzed I could ponder the effect culture has on how we treat illness. At home I run on an F80 kidney at a 450 pump speed.
Europeans would expect big and fast dialysis from Americans. The French and Germans prefer long slow dialysis and a smaller kidney. The French finesse the blood clean, the Germans take a workman-like approach. The Swiss prefer to run their patients between the different standards. They are neutral. And in the Netherlands? How long I dialyzed and at what pump speed was up to me. The Dutch expect people to be responsible for their own choices. All the units I dialyzed in compare well with dialysis units I have visited in the U.S. The concern of the staff was for the well being of the patient, only the details were different.
When it comes to payment, a dialysis unit in Straubing, Germany wanted a cash payment after each run, as did a unit in Lugano, Switzerland. All the other units take Visa. In Lugano, uniquely, you change into scrubs before you start. Everywhere food is available during treatment. The food ranged from bread in Paris to a three-course meal complete with beer or wine in Lyon. In Interlaken, Switzerland the food is free in the hospital cafeteria after you are done. The Amsterdam unit had the most comfortable chairs, Lyón the best food.
The language barrier made it a challenge to talk casually with the staff in some units but a few key phrases made getting hooked up and taken off go smoothly. In most of the units someone on the staff spoke at least some English, often fluently.
The last day of the trip, after 62 days of travel, Teresa and I were outside Amsterdam in Haarlem, packing to leave. I turned to her and said, grinning. "I could keep going. A month, maybe two or three. I would just have to stop at a laundromat." If the measure of a trip is that at the end you are not ready to leave, then this had been a great trip.
My next adventure? Possibly traveling from London to Rome in the fall, and hopefully the Olympics in Australia.
A dialysis unit, as much as any museum or café, is a window
into another culture. In fact, dialysis enriches an important part of
the travel experience. It guarantees you a look through a country's
This article originally appeared inthe March 1997 issue of Nephrology News & Issues