Managing Your Kidney Dialysis while you’re enjoying Disney World
When you’re on dialysis, travel to Disney World can be great, but it will take some pre-planning. We’ll discuss some things you’ll need to know here, but of course, it’s always essential to talk with your doctor before you go to discuss your condition and physical requirements..
Here’s some feedback we got from Debra Gann, who bought my book, Walt Disney World With Disabilities. Her comment is full of good advice:
“…In 2006 I was diagnosed with End Stage Renal disease. I’m currently on home peritineal dialysis and thought I would be unable to travel to my favorite place on earth….Disney World. Reading your informative book gave me hope. We loaded up a trunk load of dialysis supplies and headed for Florida. I had studied your book each day and followed your advice. Everything from how to request a fridge in the room for medication to the degree of roughness of the rides made it a super trip. We stayed for 10 days at the All Star Sports Resort, rode lots of rides, ate at some of the eating places you recommended and had a spectacular time… My doctor had told me there was no way I could get around Disney World and still do my dialysis. She was wrong. I always did my treatment on time, was able to stay on my renal diet easily, and came back with a nice glow about me. … Please continue to provide this information to those out there that feel they could never go on such a big trip. All it takes is some careful research, creative thinking, and you’re in for the time of your life… Our trip was such a joy and a nice break from the confines of my medical condition. I have proven to my doctor that end stage renal disease does not have to keep me from getting back out into the world.” —Debra Gann
Below you’ll find the following:
- General recommendations for anyone on dialysis
- Thoughts for those who must attend a dialysis clinic
- Info for those who self-administer dialysis
Please don’t forget to read the disclaimer page. It’s super important that you talk to your own doctor because they can make specific recommendations for you. We’re not doctors here, and this is for informational purposes only. It’s a starting point for your own research.
General info from Tony Batts, for those on dialysis visiting Disney World
We spoke to Tony Batts, a Care Technician and Facility Administrator for DaVita, a dialysis center in Celebration (www.davita.com, phone (407) 566-1780, toll Free (866) 544-6741). At the time of this writing, this was the closest dialysis center to Disney, and is only about 3 minutes away.
Tony felt that most people on dialysis know their own condition and needs. Those who are traveling know what activity level they’re able to handle, and usually do well coming to Disney. However he pointed out that traveling may take a toll because of a variety of factors including the change in routine and diet. Here are some recommendations from Tony for minimizing stress on your body if you’re on dialysis:
— Balancing activity levels at Disney World on dialysis days
For those who attend a dialysis clinic, on the days you receive your dialysis treatment, you’ll want to choose less demanding, more relaxing activities such as shows. In fact, it may be helpful to avoid the parks on dialysis days, and visit the parks on your non-dialysis days.
— Travel days and Dialysis
Avoid dialysis on the days you travel because there’s no way to guarantee that your dialysis time will work out with your flight times. Also unexpected delays can always happen.
— Being careful about fluids while at Disney World
For dialysis patients, the kidneys don’t filter out fluid, so they must limit fluid intake. They must plan for this by resting when they can so they don’t take in too much fluid. He suggests that visiting Disney World in the cooler months will help make things easier. In the warmer weather it will be more challenging because of the intense heat and humidity.
Some more recommendations for managing at Disney World
Here are some other things you might want to consider. Here goes:
— Research the rides before you go to Disney World
Check with your doctor before you go to see if there’s anything you should avoid. If you wear a catheter, you’ll want to be careful not to dislodge it or irritate the site. Consider that many rides have restraints, and some of these restraint systems might be a problem depending on your situation. Also, some rides can be very rough and physically demanding.
We strongly suggest that you research all rides before you go, and determine which ones you can safely ride, and which you should avoid. You don’t want to get to Disney and make decisions on the fly. My wife did that once, and asked a cast member at a ride she was unsure of if it was rough or not. The cast member said it was a very calm, physically easy ride. It turned out to be much too rough for her, and it flared her back condition.
Remember, there’s so much to do at Disney that you’ll never lack for fun things to do that are physically acceptable for you. If you have any questions, you can call Disney World here:
Services for Guests with Disabilities – (407) 824-5217
— Managing Medication & Medical Supplies at Disney World.
If you’re traveling with medication and/or medical supplies, you’ll want to read the following article: How do you Manage Medication & Medical Supplies at Disney World?
Room size: If you’re bringing a lot of supplies and equipment, you may want to consider your resort room size. Some of the rooms at Disney are a pretty tight fit, even without medical equipment. So if at all possible, you’ll want to choose one of their resorts with larger rooms.
Take a look at our article called Which Disney Resort Should I Pick, and scroll down to #9. That section talks about the size of the rooms in the different resorts. Keep in mind that Disney also has some rooms that are considered suites, and these will give you more space. You’ll find even find suites in a couple of the value resorts (least expensive Disney resorts).
Here’s a quote from Becky who stayed in a value resort suite and had a great experience. She also had a couple of other great ideas for making your trip easier:
“My parents do hemodialysis at home for my mom Rita Schneider and they brought their dialysis machine with them. The resort was great about letting us hold some of the dialysate so we didn’t have to crowd our room (they had the boxes shipped from the medical supply company right to the resort). We stayed in an All Stars Music family suite and rented a recliner so they could run the dialysis. It was easy to rearrange the furniture to make it fit!” —Becky Major.
You may also want to consider renting a home or staying somewhere outside of Disney property. Read our article called Should I Stay in a Disney World Resort?
Shipping Your Supplies: Sending your supplies to your resort in advance can be a great strategy. Keep in mind that at the time of this writing Disney is a charging $5 per box handling fee. Also remember that even if you’re overnighting a package, it won’t go right to the resort. It has to go through Disney processing. This may add at least a day or two until it gets to your room, and it’s possible it could take longer. Here’s what happened to Jennifer and her husband:
“…anything that is overnighted to a resort is not actually sent to the resort, it’s all sent to the Magic Kingdom mail center and takes an additional 1-2 days to reach your room. A piece to my husband’s CPAP machine broke and was overnighted to us on Thursday, but we didn’t get it until late Saturday because of this. Which no One could explain when they were searching for the package for more than a day, with a tracking number showing receipt. Finally the post office was able to clear it up, all overnight with Disney World addresses are delivered to Magic Kingdom and sorted by their mailroom, adding 1-2 days processing.” —Jennifer Davis
Here’s Disney’s Mail Services page.
— Time your trip strategically.
We mentioned weather above, and we highly recommend that you choose a more mild, and even cooler time of year to visit Disney World. This will reduce the need to drink, and it’s simply easier on your body.
Also, if you’ll be reserving time in a dialysis clinic, crowd levels could be a consideration. You’ll want to make your reservations as early as possible to get your preferred dates. Todd Herbert visited Disney World and had this to say:
“…When traveling you usually get your dialysis center to schedule you a treatment at a facility close to where you are staying. The closer to your date of travel the less likely you are to find an opening… Then you have to consider things like the time of year. Florida had a large influx of older people throughout the winter months which generally means more dialysis patients. In the summer they go back up north which creates openings for people who want to visit in the late spring and summer.” —Todd Herbert
To help you choose your ideal dates, read our article called How to Pick Your Disney World Travel Dates for info on weather and crowd conditions.
Making plans for treatment in a dialysis clinic in Orlando
According to Tony Batts, the easiest way to handle arrangements might be to contact your home dialysis clinic and see whether they can help you to arrange dialysis while at Disney. The Social Worker at the clinic can usually help you get things started.
“In the mid 1990’s, I was on hemodialysis. My family and I wanted to go to Disney and stay at The Boardwalk Hotel and Villas. The social worker in my unit set up treatments at a nearby unit, sorry I don’t remember which one. We rented a car so I could drive back and forth. The staff at The Boardwalk were extremely helpful and caring. The staff at the unit were attentive. All in all, outside of the usual dialysis side effects, I did well and, till this day, am grateful for the staff at The Boardwalk for their smiling faces and seemingly real concern.” —Monica Susan Walton
If you’re staying on Disney property, DaVita in Celebration is the closest facility, however if you’re staying elsewhere, visit www.dialysisfinder.com to find the dialysis center closest to your hotel. (Please keep in mind that we’re not endorsing any clinic, but providing research resources for you.)
Tony went over the process for securing dialysis when traveling to Disney, and he had some great tips for those on dialysis, to help make your trip safe and comfortable. Though Tony referenced Davita, the basic process should be similar for all dialysis facilities. Of course there could be differences so be sure to look into it well in advance of your trip.
Tony suggests that you start the process of contacting the dialysis clinic at least a month ahead of time. This gives enough time to get all of the logistics and paper work done, and to be sure all of your medical records will be received in time. Although they can handle a last minute traveler, sometimes they don’t have the room at their clinic and will send you to another clinic. Although you won’t be left without dialysis services, you may need to drive further.
Davita has a free service for anyone on dialysis. You can call their 1-800-400-8331 Guest Relations number, and they’ll find you a clinic near your travel destination. First they’ll try to place you in a DaVita clinic, but if there isn’t one nearby, they’ll find you a clinic as close as possible to where you’re staying.
Tony explained that if a patient calls DaVita directly, a DaVita rep will contact their home clinic to get their medical information. Many patients will have their social worker call Davita to start the process. Davita will send the visiting patient a packet which includes a form listing the medical records you’ll need to provide. It also includes forms you’ll need to fill out.
DaVita’s travel coordinator checks everything the patient sends in, and will verify insurance. If all is well, the travel coordinator contacts the social worker (or client) to say that the client is accepted. They’ll then schedule appointments based on the times you requested on the form included in the packet. Tony explained that although they’ll try to honor your time requests, they’re not able to guarantee anything. He mentioned that most people want early morning appointments so they can enjoy the parks after, but the clinic just doesn’t have enough chairs to satisfy all of those requests. He suggests that those who contact DaVita early have a better chance of getting their schedule requests granted, since appointments are set based on a first-come first-served basis.
More Info for Managing Peritoneal Dialysis while at Disney World
The four main parks have First Aid Stations (use the link to read all about it), and those needing peritoneal dialysis should be able to self-administer their treatments there. While you’re visiting the parks, you can store your equipment at First Aid. They should have a scale to weigh the dialysate. Though they have a microwave that guests can use, they suggest you bring your own warmer.
Though it’s not required, you may wish to call First Aid ahead of time. Call the main park number and ask to be transferred to First Aid in the parks you will be visiting. Call 1-407-824-2222.
DO YOU HAVE ANY ADDITIONAL SUGGESTIONS, TIPS OR QUESTIONS ABOUT MANAGING AT DISNEY WORLD WITH DIALYSIS? LEAVE A COMMENT BELOW.
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