From the Ironing Board to Tokyo: My Worldwide Adventures as a Peritoneal Dialysis Patient

By Lies Hoekstra, PD patient

Travel Peritoneal Dialysis Patient

In May 1999, it became clear that I would soon have to start continuous ambulatory peritoneal dialysis (CAPD). Since I had planned to visit an inter-religious conference in Vancouver, British Columbia, Canada, that summer, my first question to the nephrologist was: “Will it be possible for me to travel there?”

I live in The Netherlands, so it would be quite a trip for me.

Travel Peritoneal Dialysis Patient“Bless the Man!”
“If at all possible, we want you to live a normal life,” he answered. “You can have your PD bags shipped to the U.S. and Canada by Fresenius [Medical Care].”

Bless the man!

“But, what about the exchange on the plane?” I inquired.

“You may skip that one… for once.”

Again: Bless the man!

From Ironing Board to River Cruise
In the two and a half months between those questions and my trip to North America, I had some opportunities to practice dialyzing away from home. At first, I found it a very scary experience.

I started at my son’s house using the ironing board as a table and slinging my large, trusty butcher’s hook and bag over the door. The next exchange was during a birthday party on board a cruise ship on one of the Dutch rivers. I was allowed to use the steward’s cabin and dialyzed amid his (clean) underwear.

Then, when we attended the festivities in a restaurant for one of my husband’s friends, came a PD exchange in a telephone booth! (Rest assured… I thoroughly disinfected all surfaces and equipment!)

“The Big Time”
Then I was ready for “the big time!” What a relief to find the trusted Fresenius boxes with my PD bags when I arrived at my old girlfriend’s house in Buffalo, NY, where we went before traveling on to Vancouver. This time, my dialysis equipment consisted of a music stand set on top of a table. Guess what? It worked out fine!

(A vote of thanks to all the wonderful girls at Fresenius who organized the shipment of my PD bags at the last moment… difficult custom declaration forms and all. Alas, even that was not enough for U.S. Customs; my friend still had to fill out another million forms.)

“Time to Travel On”
After a few days of memories (my friend and I met in the 1950s, when I stayed at her house for many months as an exchange student), it was time to travel on. We had to make an early start because our plane from Toronto to Vancouver left at 9:45 a.m., or so we thought. At the check-in desk we heard we would have to wait until 5:30 p.m., which meant doing an exchange in the baby room at the airport, with my husband playing the pole and holding the bag.

There followed a week on the campus of the University of Columbia in Vancouver (dialyzing in my room, or during the day in the office of the conference organizer) and then a six-day cruise to Alaska.

A “Distress Call”
Before I first started dialysis years ago, I had put a “distress call” on an American Internet bulletin board for dialysis patients.

“I’m starting dialysis and would love some cheerful advice,” I implored.

Barbara from Vancouver answered and cheered me up with stories about doing exchanges in her husband’s van on the beach. Now that I found myself in Vancouver, I contacted Barbara and she offered to show us around.

Stopping the “Organ Recital”
Before the sight-seeing tour with Barbara as our guide began, we both did our PD exchanges in the hotel room in which my husband and I were staying. Barbara and her husband then took us around to see the most famous sights of her town. After another exchange at her house, we were taken out to dinner. We tried very hard not to talk about kidneys and dialysis all the time (stopping the “organ recital”), but it was very special to meet someone who knew exactly what I was going through and what I was talking about.

And then another very memorable dialyzing experience, at the Royal Yacht Club, where we went to receive a briefing on what to expect on the cruise. This must be the classiest place I have ever done an exchange! The library was all brass handles and polished wood. But I did have to sit on the floor to get enough height for the bag.

“A Very Decadent Dutch Gin” at Sea
Boarding the ship in Canada was quite easy: a friendly lady guided us and our boxes past the custom officers. We felt quite at home on a Dutch cruise ship and, in the evening, had a very decadent Dutch gin while watching the sunset.

Doing the exchanges in our cabin was no problem, and we opted for half-day excursions, which made it possible to do the noonday exchange in the cabin and be back again before the evening meal. Thus, we had a few days at sea, but also excursions to three towns.

“A Very Special Day”
The highlight of our trip was the excursion out of Juneau, Alaska, where we went whale-watching in a small boat. We were in luck: within 10 minutes we saw a whale with her calf. Add to this sea lions, seals, bald eagles, and very enthusiastic and knowledgeable guides and you have a recipe for a very special day.

In Skagway, we took the train to the White Pass, where the gold diggers and their mules traveled on their way to the gold fields. Unfortunately the famous Alaskan fog obscured most of the view.

In Glacier Bay, we saw the ice flows drifting past. It was cold and foggy on deck, but the view of the glaciers was very impressive. The crew served Dutch pea soup on deck at 10.30 a.m., and very welcome it was. Something made us wonder, though: Here we were amid magnificent scenery, but there was hardly anyone on deck! Most of the passengers were busy playing bingo or attending a picture sale!

Ironing Board Redux
Following our cruise, we spent another day in Vancouver before our plane left, and the PD exchanges were done in our hotel room. After yet another exchange in the baby room at the airport, we had an uneventful nine hours flight home, again without dialyzing. Some of our children came to meet us at Schiphol Airport, and we were driven to our oldest son’s house for another exchange at my favorite spot–the ironing board!

Dialysis on the Autobahn
The next year, I was again ready for another adventure: a week’s holiday in Switzerland. Again, the boxes with the bags were shipped, to the holiday chalet this time.

This left the problem of an exchange during the trip by car on the German Autobahn. I most certainly did not want to use the restrooms for this during our pit stops. This left the car as a viable alternative. My sisters- in-law, bless their (fairly large) bottoms, shielded me from curious glances by standing in front of the car windows in the parking lot.

A Return to the “Organ Recital”
Not too many months later I received a call at work from my nephrologist. He told me he was going to spoil my holiday plans: there was a kidney for me!

I rushed back home, picked up my X-rays at the dialysis center, and took a taxi to the University Hospital at Nijmegen, where the transplant was going to take place. The taxi driver was certainly exceeding the speed limit. I think he was secretly hoping to be stopped by the police.

“Sorry, officer, I have to take this lady to hospital for a transplant!” was the excuse he would undoubtedly use.

So, there I was at the hospital at noon, on the operating table by 2.30 p.m., and back in my room with a working kidney by seven o’clock in the evening.

Conclusion
Since that memorable day, I have traveled with more ease to the U.S. (twice), to Prague and Budapest, and to Taiwan and Japan.

Alas, on that last trip I injured the prednisone-weakened skin on my leg. So, what was to have been a trip to temples and shrines in Japan ended in the emergency room, a three-day stay in a hospital bed in Tokyo, and a stretcher ride home on an airplane. But that’s another story….

About the Author
Lies Hoekstra, 70, lives in the Netherlands and has polycystic kidney disease (PKD). She is an editor of, and a regular contributor to, Wisselwerking (Exchange Work), the national Dutch magazine for kidney patients.

Uploaded: 1-31-2007

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