20 Apr Patient Stories: Traveling while on Dialysis
Many people love to travel in the summer but for some kidney patients the added challenge of dialysis or a regular medication regime can make travel seem overwhelming.
In the late summer of 2013, my former college roommate won free tickets to a weekend long musical festival. Knowing my intense love of the performers he invited me to join him. I live in New York and the event was in Philadelphia. Easy road trip except for one thing: I was on dialysis. I had two choices: 1) forgo the festival and live with regret or 2) pack my car up with a 35-pound peritoneal dialysis machine, other heavy bags of dialysis solution, tubing and various supplies and go.
Missing a free concert wasn’t an option, really. I immediately booked a hotel just outside Philadelphia and days later my friend and I were asking the hotel concierge for a hotel cart to help bring all my dialysis supplies to our room. I performed 10 hours of Peritoneal Dialysis nightly in a hotel 150 miles from my home for three consecutive evenings. The music festival was as amazing as I had anticipated. I made dialysis work for me, not the other way around.
When my husband and I met, his transplanted kidney had just failed and he was back on dialysis. We knew there would be challenges ahead of us but we knew we could get through anything together.
One thing we vowed to do was not let dialysis hold us back or stop us from traveling to all the places we desired see. Over the past few years, we’ve traveled to the Jersey shore numerous times, Cape May, Atlantic City, Philadelphia and Florida. We got married in June 2013 and even honeymooned in the Dominican Republic. Jose traveled to a clinic an hour from where we were staying to undergo dialysis. On other trips, we found clinics much closer.
Though you always have to plan treatments and locate a dialysis center ahead of time, we encourage other dialysis patients to do so and not let anything stand in the way of traveling!
One of the blessings of dialysis is that it is so flexible. That is probably not a word most associate with dialysis, but let me explain. I was on dialysis for 20 months – 10 months of hemodialysis and 10 months of peritoneal dialysis. Throughout this time I worked and continued my service as a Scoutmaster for my local church.
My work requires travel throughout the state of Utah. During my 10 months of hemodialysis I made arrangements in four other dialysis centers to complete my needed sessions. I worked with my home dialysis center social worker to identify the closest center to where I would be working and who to contact to make arrangements. It helped to know my work calendar a month or so ahead.
With peritoneal dialysis came greater flexibility. I chose to complete 5 exchanges a day (40 – 50 minutes each) instead of the nightly exchange (8 hours). This allowed me to complete exchanges at work in my office, in the car while driving, and even at a week-long Boy Scout camp in the tops of the central Utah mountains (7700 ft elevation). This required working with my supplier so that I had all the needed supplies when I traveled and, yes, I tended to fill the trunk with my stuff, but it worked.
My schedule was not back to normal, but considering that my kidneys had failed I was sure grateful to continue to work and volunteer somewhat close to what I had been doing before. After a successful transplant I’ve kept on doing both.
Don’t let dialysis be a roadblock to making fun summer plans with family and friends. Even if detailed planning is involved to secure a hemodialysis seat out of town, the reward of taking control over something in your life that seems uncontrollable is invaluable and uplifting and will allow you to create memories that will last a lifetime.
Find A Dialysis Facility through Medicare.gov
Travel Tips: A Guide for Kidney Patients from National Kidney Foundation (NKF)
Traveling for Home Dialysis Patients from Davita
Tips Chronic Kidney Disease Patients Must Know Before Traveling from KidneyBuzz
General Travel Preparation: Practical Considerations from Centers for Disease Control (CDC)
Chronically Happy Traveling Tips from Renal Support Network (RSN)
Tips for Traveling from American Association of Kidney Patients (AAKP)
Have Transplant, Will Travel: 10 Tips for Transplant Recipients from NKF
Eating Tips for Travelers with Kidney Disease from Davita