Tips for Planning a Driving Trip on Dialysis

This past week I was asked by the National Kidney Foundation to write a "guest blog" for their website (www.kidney.org) containing tips for planning a driving trip. Here is what I wrote:

Top 5 Things To Know When Planning a Driving Trip For Those on Dialysis

My wife Linda and I will soon be embarking on a 31-day, cross-country driving trip during which she will have a dozen dialysis treatments in ten different centers, from cities like Las Vegas and Memphis to the middle-of-nowhere center in Kayenta, Arizona. We’ll visit a number of friends along the way, focus the most time on the parks and canyons of southern Utah, spend our anniversary at the Grand Canyon’s North Rim, and celebrate Linda’s birthday at Graceland. By not staying in any one place more than two days, we have challenging logistics, and while most travelers won’t want to drive as much as we expect to, many of the things we have learned about planning such a trip can apply to whatever road travel a dialysis patient might want to experience. Here are some tips for making any driving/dialysis trip smoother:

·         ORGANIZATION: Logistics are tricky because even though you can arrange in advance for the date of a treatment, dialysis centers cannot tell the visiting patient what time of day a chair will be available until a week or less before the treatment. They also might require you to arrive in that city the day before the treatment. So if you’re planning more than a couple of stops, you need to be flexible enough to accommodate their schedules. We have created a notebook with several pages devoted to each day of the trip, including driving distances, alternate routes (if we have time), phone numbers, confirmation numbers, directions, and more. Make charts or spreadsheets and keep lists, starting with the places you have to be on dialysis days.

·         VIGILANCE: Be more diligent and careful than normal about medications, diet, and fluid intake. You’re on the trip to have fun, and the healthier and more energetic you feel, the more you’ll treasure the trip. Make sure to bring prescriptions for medications you might need to replenish on the road. Be extra diligent on your stretch day.

·         SELF-RELIANCE: You can search for dialysis centers around the country online, but your center’s social worker will coordinate the treatments. Medical records have to be transmitted, and there’s a lot of red tape involved, so trust the professionals. We’ve been very involved in the communication between the social worker and the dialysis centers, because ultimately it’s our responsibility to see that everybody is ready for us when we arrive. Be sure to bring copies of available records, medication lists, prescriptions, insurance, and other documentation.

·         COMFORT: Because driving involves long stretches of time spent in a cramped space, it is difficult to stay as comfortable as you’d like. But some things can help, like bringing pillows and blankets for passengers who might want to sleep, stopping every hour or two to stretch and get some fresh air, and carrying enough food and water to make hunger and thirst non-issues. Try not to drive too much in one day.

·         ATTITUDE: With dialysis, not all days are created equal. Relieve anxiety by accepting that some days are better than others, and get the most out of every day. Even if it’s just taking the time to watch the sunset from a scenic place, or reading something together, share the day’s joys. During dialysis, the caregiver should do something special with the time if possible, like going to a museum, restaurant, or store that doesn’t interest the patient. Make every day count.

That's it. I think there are a lot of good hints here, but as I wrote it I also felt that there was a lot more that I could say in each of those five areas. In addition, there was the uneasy realization that I haven't actually taken this trip yet. I can see where I might have gained enough expertise from planning this extravaganza to blog about it, but the proof will be in the trip itself. We set off three weeks from today, and our excitement is growing. The suspense is building. How will the trip unfold? Just yesterday, doing some research for the trip, I discovered that Scottsbluff, Nebraska, is a place we have to see, and so we shall. What other unexpected treasures are waiting out there for us? Stay tuned.