The Trick To Planning This Trip

When Linda was put on the national kidney transplant list in 2006, we put off serious travel until after the transplant. Everything pointed toward the day when, free from dialysis and no longer tethered to a machine for a dozen hours a week, she could travel without clock or calendar. We did take one trip that year, flying to California, a logistical nightmare I'll detail some other time. Since then our travels have been limited to long weekends except for two five-day trips to Maine which involved getting one dialysis treatment there for Linda.

In 2010, when we learned that Linda would not be able to get a transplant after all, one of my first disappointments was that we wouldn't be able to take the trips we had discussed in a daydreamy way, including cross-country drives. I've traveled from one end of the country to the other about two dozen times, criss-crossing the scenic wonders of the American west. Linda has taken one cross-country trip in a rented motorhome with three little children, which to me hardly even counts. But going on the road with dialysis in the equation is a daunting thing, and it took us more than a year to get serious about doing it anyway.

The tricky thing about the logistics is that you have to plan nearly every day of such a trip while knowing that you can't plan nearly enough. Here's what I mean. Linda will need a dozen dialysis treatments on the road, each lasting a little more than four hours. Normally she goes to dialysis on Tuesday, Thursday, and Saturday, a schedule we will maintain. So on those three days, I have to get us to a city/town that has dialysis centers, or one center in an out-of-the-way area like southern Utah. There are websites where you can look up dialysis centers, and the two companies which run most of the independent dialysis centers around the country are quite helpful (in over two hours of phone calls so far) about finding the needed centers.

That's the part you can plan and must plan, since your home dialysis center must send records regarding the patient's health and normal dialysis regimen (there are many variables determining each patient's treatment) to those centers so they can be prepared when you arrive. However, they cannot tell you--until a week before the requested date, give or take--what time of day a chair might be available for you. And without that information, you can't plan anything else. So embarking on a 31-day trip, knowing we'll be in those twelve places on those dozen dates but not knowing when or how we'll get there, takes on the quality of an adventure.

Why can't we know earlier than that? Dialysis centers come in different sizes, with varying number of chairs. In many centers, all the chairs are spoken for. If you have a dozen chairs and you run three cycles a day (some places only have two patients per chair per day), that's room for 36 patients, and if that many live in the area, you can't accommodate visiting patients. Our impression is that most places other than remote centers try to keep chairs available. In one sense, they have to. The outpatient dialysis population can change quickly. There are four ways that can happen: a patient can get a transplant, get admitted to a hospital, or die, or a new patient begins dialysis.

The dialysis center in Cincinnati where Linda will have the final treatment of the trip could give her a time of day today, but they couldn't promise it wouldn't change. A week before the date, there's a better chance that nothing will change, but we'll be calling each center just a day or two in advance of arrival to make sure they'll be ready when they said they would be.

There are several places where we have requested the earliest available time in the morning, because we need to get on the road and to some other special place by day's end. Starting at 7 AM would put us fed and on the road around noon, and that's what we requested, but we can't know. If her treatment will start at 7 AM, we have to make sure we get to that city the day before, or no later than the night before. We've already heard from one center which won't dialyze anyone who arrives in that city the same day. But if the treatment won't start until 2 PM, that gives us time to do our exploring earlier in the day, perhaps in another state before moseying on over to the dialysis center.

That's all there is to it. I have to figure out how much time we'll have to drive each day and how far we either can or need to get in order to do what we want to do that day and the next. And the next. I only need to coodinate the dialysis treatments with an array of friends we're visiting along the way, some museum treks, meals, lodging, and whatever else comes along. It will be an adventure, but the United States is a terrific place to explore by road. I'll write more about that next time.