Traveling with dialysis... The tips your nurse won't tell you

Posted by Grace Doscher · Mar 27 · about Before your trip

We travel. A lot. With just one hitch.

My husband is on  Peritoneal Dialysis .

To say that it is a pain in the rear would be a huge understatement, and I’m not even the patient. My husband has a rare genetic kidney disorder which has now succumbed into full kidney failure. His doctors have placed him on the transplant list here in Atlanta, but what most people don’t know is that they give you ZERO insight as to your location on the list. The only answer we get is that the typical wait here in Atlanta is 3 years for his blood type, and we then have to compare that to his current time on the list (2 ½ years) to get an idea of where we might be. It’s a waiting game with no given wait time.

We have been instructed to live our lives and go about our days as normal. Our normal is traveling the world, and we have refused to let PD get in our way. I wanted to share with you how we do it, and give others hope that they can travel as well. Your life shouldn’t be put on hold while you hang in limbo waiting for your transplant.

Our experience traveling-

We have a love/hate relationship with Baxter Medical supplies. They are supposed to ship our supplies all over the world, but we use them as little as possible to avoid their astronomical shipping fees and bad customer service. We have also tried shipping the supplies ourselves via UPS, however they didn’t make it through Mexican customs and we paid $400 for the boxes to go all the way to Mexico City and right back to Atlanta. From that day on, if it’s a 4 night trip or less we bring our own.

Here’s the deal: most airlines have a medical supply policy that lets you check your supplies for free. All you need is some extra suitcases, and probably a rental of one of those luggage carts in the airport because you’re going to look like you’re traveling on a 3 week European tour. I usually tell people it’s my hair and makeup bags when I get comments on “all those bags for just two people?”

The secret to get your bags for FREE is to not wait until you get to the check in counter to throw around your Delta free bag policy verbiage. They seem to get upset when you show up and haven’t let them know about your situation ahead of time. Actually, they can be difficult at times so just prepare yourself (apparently free is not popular and will buy you no friends). We always, and I mean always, call Delta prior to arriving and add a note to the reservation stating that we will be carrying medical supplies. I’ve never had this go down without a 20 minute conversation discussing the type of supplies or the medical condition of the traveler. This is the key to having a smoother process during your check-in. When they start giving you attitude about your situation during check-in, and how they don’t think it’s a legit policy, remind them that it’s already been noted on the reservation. That usually gets the ball rolling and typically brings in the supervisor to oversee the whole operation. They will then have to enter a code into their system to override the baggage fee. This has saved us hundreds of dollars in shipping, and allows us to keep our supplies with us during our travel. Yes, we could always lose a piece of luggage, but we could also have our supplies not make it through customs again, so we have to weigh the benefits of each.

Being in the travel industry gives me the advantage of being able to call my contacts at the hotels to let them know that we have someone in our party on home dialysis (this is usually another conversation explaining what home dialysis is) and that we will need one nightstand in the room completely cleared so that we have room for a machine, and sometimes we even can get them to bring a large bucket for his drain line if needed. I’m always on the lookout for the hotel room layout to make sure that we are close enough to the bathroom from our bed. Sometimes that means certain hotel rooms are off the table, but we’ve done pretty well by doubling up the drain line.

My last tidbit is this bad boy-

This is how my husband got back in the water after a year and a half abstinence. We have avoided beach vacations for the longest time, because who really wants to relax next to an ocean they can’t even get in? With Peritoneal Dialysis, and this depends on your doctor/situation, the recommendation is to avoid being fully submerged in water. We let this disease dictate our activities on our honeymoon, but for our recent vacation to Mexico I said enough was enough. Through my determination and research, I came across these handy wound covers, which are basically heavy duty glad plastic wrap that creates a waterproof seal around the area you are trying to cover. It worked so well that you can keep it on all day, which is perfect if you’re lounging by the pool.

I really want this post to give hope to other Dialysis patients that they can still live their life! We don’t know what the future holds, or when our phone will ring telling us that our opportunity for a kidney is here. It’s up to each of us to make the best of what life has handed to us, and make lemons out of lemonade. I encourage each of you to travel to the fullest!

XOXO

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