Kidney Living Voices

Spring 2013 Issue
Traveling on Dialysis
What tips do you have for traveling on dialysis? What’s been hardest about traveling and how have you solved the difficulty? What advice do you have for others to ensure a great trip?
tips for traveling on hemodialysis: 1) BE INVOLVED. Know your numbers, dialysis prescription and dont hesitate to ask questions. 2) DO IT!! dont be afraid to travel. These will be some of the best adventures of your life. You will get to know other patients and get to know how other clinics handle things. You may even bring some great ideas back to your unit OR realize your clinic is not as bad as you thought it was.
The hardest thing about traveling on hemodialysis is not being able to go out of the country. Dialyzing out of the country requires payment up front. I have solved that by just knowing that there are wonderful places right here in the USA that I have not yet seen.
To ensure a great trip - plan ahead and be educated so that you have an input in your overall health while being away.
Posted by: Julie Boatwright
My husband I had been on dialysis for 18 months and we plan our first trip to see his brother and sister-in-law. Our center has been great. We had located a center on the internet that was close to where we were staying. Our local center helped make all the arrangements and that was all good.

When my husband went to the facility he asked that they not take more than 3 lbs of water off of him, as they had been doing at his home center.

My husband walk in and was wheelchaired out! He didn't come out at 228 lbs as he requested and what his papers instructed, but came out at 223.5 lbs. The nurse told me he would be fine.

To make a long story short, it took three of us to get him in the house. After a couple of hours 911 was called. He spent several hours at the hospital receiving fluids by IV an potassium pills.

This experience has convinced him that not to travel.

Because people who saw him once thought they knew more than he did or what the records they received from people who had been treating him for over a year knew, he will have nothing to do with traveling.
Posted by: Peg York
In my experience, making sure that you are part of the planning process and not just having your dialysis center complete all travel related information. Depending where you are traveling, contact the nearest dialysis center in that state/city, ask questions related to the center's treatment options, process, paperwork needed and their accommodations. In addition, and whenever possible, locate a center that is in close proximity to where you will be staying and calculate the time that is needed to get to this center, common landmarks in the area etc. It's always important to speak directly with the dialysis staff at your travel center in order to prepare for your stay and get to know what are some of the center's expectations of the traveling dialysis patient.
Posted by: Jacqueline Colon
Mainly the stress of making the arrangements for visiting a clinic. Social workers handle the work involved but it still is stressful. Be aware of the travel from your hotel to the clinic. Cab fares of $15 or more each way can add up fast over a week or longer.
Posted by: Michael Ryan
I was on dialysis on CAPD for 18 years, but on November 11, 2012 I received a kidney transplant and am recovering well. However, traveling on CAPD was not difficult. I would just pack a few bags for over night trips or leaving the state Baxter would deliver to my hotel. The biggest challenge I would run into was hanging the bags in hotel rooms. I would pack a tough plastic hanger for years. It worked ok, but I would still have to hook up on the bed and hang the bag on the bathroom door. About 4 years ago I found hooks that stick to the wall but could be removed without damaging the wall. The hook is made by 3M and I LOVE them. I would tell all CAPD patients to have a few for travel or just to keep around the house. They were absolutely a life saver. It made traveling on PD a breeze. I hope this helps a dialysis patient get out and enjoy life more.

Sincerely,
Melanie Austin-Thomas
Posted by: Melanie Austin-Thomas
submitted a few minutes back.
Posted by: Y. C. Satyanarayana.
My husband was on dialysis for 7 years in between transplants and we had several successful vacations. We even went to Hawaii twice!
The best advice I can give is to PLAN, PLAN, PLAN! Work w/ your doctor and clinic to let them know where you are going and for how long. They can help locate a dialysis center nearest your hotel and even book your treatments while you are away. Before you go be sure to map out how far the clinic is from your hotel and when you arrive make a dry run to the clinic so you know exactly how to get there before your first treatment.
Be sure to allow plenty of time to rest between treatment and activities. If you can, go to a grocery store when you arrive and buy kidney friendly snacks. Most of all, have fun and remember that you can do anything you put your mind to!
Posted by: leslie guerrero
For traveling on dialysis, I suggest that you arrive on schedule for your treatment. That facility has made space available for you and can show your appreciation by showing up on time. The hardest thing for me to travel is scheduling and cost. I was initially told to schedule a dialysis center as far ahead as possible. Well, I soon found out that some locations won't accept a request from a transient so far ahead of time. It has become a guessing game as to if I will be able to dialyze on a trip or not, therefore causing me to cancel my trip altogether. It's been very frustrating. My advice for a great trip is PRAYER!!!!
Posted by: M. Lee
My husband was on peritoneal dialysis for many years before getting a kidney transplant. We travelled in the U.S. and also Europe. We carried the machine with us on the plane, but Baxter (which is an international company) had the bags of fluid already delivered to our destination ... so there was never a problem.

We received the first issue of the new magazine and thoroughly enjoyed reading it.
Posted by: Sue Copeland
My wife and I recently traveled to Niagara Falls Canada by car (our first trip since being on dialysis). I am a home hemodialysis patient. First I compiled an accurate list of everything I could possibly need. (My center actually uses my list to hand out to other patients traveling.) I also lined up backup facilities across the border back in Niagara Falls USA in case I needed them. If doing dialysis 3 days or less just bring everything with you, if more that 3 days tell your supplier that you'll be gone for a week or longer and they will deliver the boxes of dialysate bags right to your location. Just bring 1 days worth in case they are late. Check off everything as you load it into your vehicle. When you arrive have a strong bellhop (machine weighs 80 lbs.) remove your machine and supplies from the car to a large luggage cart. When in the room scope out where you would like to setup. I chose a chair that provided me a view of the Falls out the window and also the TV. I took everything off a nightstand, positioned it by the seat, thoroughly cleaned it with antiseptic wipes and set my machine up on it. I bought along a large garbage bag to cover my machine when not in use to protect it from dust and sprays used by the hotel cleaning staff. When leaving you'll be leaving with alot less stuff since using most of the supplies. Remember you have alot of flexibility of when you can dialyze. AM, During the Day, PM etc. I saved my days off for the nice sunny days and dialyzed on days with inclement/marginal weather. Overall had a great trip (our first since dialysis). The worst thing is ALL the STUFF you really need to bring. It can be overwhelming. Next we're planning a trip to the US Virgin Islands for our 30th Anniversary next year. You really can travel and have a great time despite being on dialysis. Wishing all a short wait on a transplant list.
Posted by: Ken Balla
Being a dialysis patient does not mean that you have to be confined to a machine or your home dialysis unit. Traveling can help take some of the stress and worry away while helping you feel that you can travel just like every one else with just a little extra planning. When traveling, plan as far in advance as possible. Involve your dialysis unit social worker but also be active in locating a unit and information on your own. If you are not able to do it, have a representative on your behalf assist you. It is important to personally confirm with your insurance which alternative unit in another state or country if applicable will be covered. Select a facility that is in-network to minimize any out of pocket cost. Another benefit of making arrangements in advance is to ensure that the facility has the appropriate supplies to meet your needs. I personally traveled and was unable to make advance arrangements for my hemodialysis treatment due to the nature of the trip. The facility did not have the appropriate type of dialyizer, which resulted in me having a sever reaction. Lastly, do not hesitate to call the unit you will be visiting your self to ask questions. It is your life that you are placing in their hands. Take every precaution.
Posted by: Akilah B
Set up treatment yourself or have social worker. Know how far the treatment center is from the hotel. Set-up transportation. Travel with flow sheet. Inform center any information about you that is not on flow sheet. Have the right amount of money if traveling out of United States. Reimburse by insurance or tax write off. The worst experience I face was that the treatment center was too far from the cruise boat I was vacationing on.
Posted by: Lisa Baxter
Make sure you have enough phosphorous binders.
Have contracted with the alternate dialysis clinic and have the address and travel directions to the clinic.
Posted by: Arthur Lueders