Editor's Note: This Patient Profile offers two unique perspectives on dialysis treatment. The first is a description of a European patient's dialysis experience in the United States. The second article is written by an American physician and kidney patient with experience in world travel.

By Knud Erben

When a German patient visits the United States, German health insurance pays approximately $180 per dialysis treatment that costs at least $300 (today's exchange rate). Nevertheless, German dialysis patients are glad to be partially reimbursed when dialyzing abroad and they love to travel to the U.S. like their healthy counterparts.

With some prejudices, thoughts and expectations in mind, a friend of mine began his journey anticipating his first dialysis treatment in the United States.  He had heard stories of a country that had only for-profit, privately owned, dialysis units that provided short dialysis times.  He was concerned about the reported poor long-term survival rates of American patients.  He also had personal concerns about being so far away from home if there was an emergency.  On the other hand, he was excited by his anticipated holiday.  Upon boarding the plane, he was pleased to know that all treatments with the dialysis center had easily been scheduled and all his medication was with him.

Upon arriving at the American facility, the head nurse welcomed him warmly. He had paid for his treatment in advance, so there was no insurance information to provide. He was escorted to a chair for treatment, which surprised him. In Germany, he was used to laying in a bed for treatment.  He was also surprised to see older dialysis machines than he had at his home unit. All the treatments went very well and he encountered no medical problems. At each treatment, different nurses were responsible for him and he preferred a woman named Mary. He could even dialyze for five hours as he preferred. He wondered if it was because he paid more for the treatment. Most of the other patients at the unit stopped after three to three and a half hours and some of them had to lose four kilograms or more of fluid in that short time. As is the usual custom in Germany, my friend expected a hot meal to be served, but it was not. He was impressed, however, that patients had their own TV.

At the beginning of the second week, he was asked to meet the doctor right before his next dialysis treatment. Before this time, he had not seen the doctor in the unit.  It was a simple physical, but it cost $250. During each treatment, Nancy, a social worker visited him. She was concerned about his needs and even gave him ideas on places to visit in Florida. In Germany, there is no similar service available.

Many weeks after my friend left Florida and returned home, he received a letter from the dialysis unit. It was a bill for an additional $200.  The bill was from the doctor for a "stand-by" fee for emergency calls. All totaled, my friend spent over $2,000 in medical expenses for his two-week vacation in Florida.

By A. Peter Lundin, MD

For people who love to travel, being on hemodialysis poses a number of problems. Going on a trip for any length of time requires careful planning and scheduling of treatments. Having grown accustomed to one's own unit, there is a certain anxiety about dialyzing somewhere else: strange faces, different equipment and new procedures.  Some have managed to avoid these worries by traveling in a motor home with their dialysis equipment or using portable dialysis machines.  However, when one thinks of traveling outside of the United States, arrangements for dialyzing in a treatment center are especially necessary.

A long-term patient I once knew traveled all over the world without concern. She often improvised her plans, but never lost the opportunity to see the sights and have a good time. I am a more cautious traveler. In dialyzing outside of the United States, expect difficulties with language in non-English speaking countries and know how to convert kilograms into pounds. However, many who work in dialysis units speak some English and many of the terms used in dialysis are similar although pronounced with a different accent.

My overseas dialysis treatments have, with one exception, ranged from good to excellent. The one horrific treatment was in Budapest before the fall of communism. I was to dialyze in the Semmelweiss Institute. The equipment was old, of Russian manufacture, and poorly maintained. The young patients I saw looked very underdialyzed, and didn't think they would live long unless they received a transplant.  While being hooked to the machine, the nurse dropped the naked venous line tip on the floor, picked it up and attached it to my needle before I could say anything. The irony is that Semmelweiss was famous and pointed out how doctors spread infection by not washing their hands between patient contact. Contrarily, in the Charles University in Prague, about the same time, I received a superb treatment. The doctor who ran this program was interested in achieving adequate dialysis and, even with limited resources, provided it for his patients.

I spent a six month sabbatical period in Heidelberg, Germany in 1987. There I dialyzed for five hours, three times per week in a bed. A selection of meals was offered with each treatment. Of course, the German government paid considerably more for each dialysis session than is the case in the United States.  Medicare does not pay for dialysis outside of the United States, so I was fortunate that my secondary insurance coverage paid the costs. In my experience, it was rare to find evening dialysis and treatment three times per week cut into the time available for sightseeing. The nurses were highly competent and I saw a doctor during each treatment. They were also happy to see that I inserted my own needles. This was also true in Cologne, Munich, Vienna, Berlin, Rome and other cities where I dialyzed.

My experience was somewhat different during the month I spent as a visiting professor at the Chang Gung Memorial Hospital in Taipei, Taiwan. The philosophy of those that ran the hospital was to accept all patients, and they had a large dialysis center with over 50 machines. However, they felt that dialysis was merely a technical procedure that any high school graduate could perform with minimal training. There were too many patients for the doctors and fellows to manage easily, taking care of both dialysis and general medical problems. The dialysis was adequate, but I am sure many medical problems could not be managed in a timely manner, let alone attention paid to psychosocial needs.

Taiwanese doctors handle the latter problems in a different manner. I was invited to a meeting for the dialysis patients of Taiwan, held in my honor. The doctors told me ahead of time that Taiwanese patients had a different concept of dialysis and life. However, I found that their concerns and questions were not at all different from what I hear from American dialysis patients. I suspect it is just that the philosophy of Taiwanese doctors is also not different from many American doctors - patients are expected to be seen but not heard. Nevertheless, I was treated with great respect and courtesy by the doctors and renal fellows and enjoyed the visit immensely. Also, my dialysis treatments in Japan were a "one-of-a-kind" experience. At that time, the doctor was required to be around at all times. He or she put most of the needles in (I still and always insert my own). The language problem was quite difficult in Japan, however, the politeness and concern was exceptional.

How does one arrange dialysis overseas? I am unusual in that regard in that I consult with my European or Asian medical colleagues as to the quality of a facility or nephrologist in the area in which I would travel. I am sure that the quality of care in overseas facilities can vary as much as in the United States. Putting in my own needles lessens the anxiety on that issue to some degree and a couple of subadequate dialysis treatments are not likely to be fatal.

AAKP has lists available for centers that accept travelers. However, the lists don't rate the treatment at each center. You must take the initiative to call and ask a few pertinent questions relating to length of dialysis, type of dialyzer, blood flows used, water quality, accessibility of a doctor, etc. and maybe even something about patient survival. If they still will accept you after the questioning then it is a good center, with a staff confident in their abilities. If all that you are interested in is the view, meals served and other creature comforts - then you take your chances.

In June I will go to Rio de Janeiro, Brazil, to visit friends. They also maintain several dialysis units, and I know they care about quality. Besides the fruit is fresh and tastes great.

Knud Erben is Secretary General of CEAPIR and Vice Chairman of Dialysepatienten Deutschlands. He was treated as a hemodialysis patient for over 10 years and has had a working transplant since 1991.

A. Peter Lundin, MD is a nephrologist at State University of New York, Health Science Center in Brooklyn. Dr. Lundin is a past president of AAKP and a member of the AAKP Medical Advisory Board.

This article originally appeared aakpRENALIFE, Vol. 16, No. 3, November 2000.

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