Disney World with Peritoneal Dialysis/Cycler

[darkpixie08]

We plan on going to Disney World with my father who is on peritoneal dialysis. He uses a cycler at night, and will need to be hooked up, for 8.5-9.5 hours each night depending.

I know that we can just send all his medical supplies directly to the hotel, and will be taking breaks during the day so that both he, and our daughter who will be 4 can rest back at the hotel, but I'll admit to being a bit nervous about the whole thing. Has anyone here done or been in a party with a member who was doing dialysis via a cycler? How did your days go? Did you have to start later or leave the parks earlier than you had originally intended? Did you have any problems getting everything set up in your hotel room? I'd just like a better idea of what to expect.

Thanks!

 

[dclfun]

My son is on a cycler as he recently changed from hemo to PD. We have not stayed at a Disney resort yet with his equipment. We live locally and do visit the parks and he has not had to leave early to get home and set up. Your Dad may not be able to do the late EMH unless he plans to stay at the resort longer the next morning to finish his treatment- I know for my son it's okay to alter the time he begins/ends as long as he gets in enough exchanges. There is another poster here who has been on PD for quite some time but I'm pretty sure she does her own exchanges as she mentioned renting an ECV because her tummy is full and as such she gets worn out more easily. That said, I would be concerned about your Dad's stamina during the day at the parks. It's alot of walking and if his hemoglobin is low he will tire easily from that alone. Is he considering an ECV?

As to the resort room, I would bring an extension cord.( I usually bring one that's attached to a large multi-plug platform for my medical equipment). This way when he needs to warm his bags and use the cycler at night, he won't have to worry about where the outlet is. I know the distance from my son's room at home to the bathroom for drainage is less than the distance from the bed closest to the bathroom at the WDW resorts so I'm thinking your Dad won't have an issue with that either.

if you do have any issues with the room arrangements, a bed can be moved or furniture removed by calling engineering. HTH!

 

[DvcDoc]

I haven't been to the world while doing PD, yet. We did have a trip planned for January, but had to cancel though nothing to do with my renal failure. As you noted, I had set up with Baxter to have my dialyisis fluids shipped to the resort, after confirming with them this arrangement was going to be ok. I made arrangements through my local dialysis center to have the Central Floriday Kidney Center on call if there were any emergency issues I needed help with while we were at WDW. I was arranging to carry all of my misceallaneous supplies (masks, wash, transfer sets, drain bags, etc.) with me, but your idea of shipping them ahead is good too. I was planning on using the extra space for souvineers on the way home lol! As mentioned by dclfun, I was concerned about my stamina doing the parks all day. Because of that, I arranged for an ECV for the duration of our stay. It seemed like fairly cheap insurance to allow me to keep up with my wife and daughter for the week. I do 9 hour cycles with a manual 3 hours before connecting in the evening. It is correct that your father can adjust his start time from day to day, depending on what you want to see when. He's just tethered to within 20' of the machine for that 9 hours.

Hope this helps some. Give a yell if you have any questions I can answer.

 

[dclfun]

Ah yes...Baxter! They are great with their deliveries and the other poster I mentioned has not had trouble getting her supplies delivered. The only challenge she had was staying at one of the convention resorts ( Boardwalk ) they tried to charge her for the delivery. It was a hassle for her to get the charges removed and she had to go through DVC (she is a member) after her return home. I have seen Baxter boxes outside resort rooms at Pop Century, so we're not the only ones!

 

[darkpixie08]

Thanks for the reassurance! My father is pretty much confined to an ECV for any distance (he's lost feeling in his legs), so an ECV during the day won't be a problem. I know we'll have fun no matter what, but it's nerve wrecking at the same time. I'm sure that he gets frustrated sometimes with all his medical issues, and the best way to combat that is by not forcing him to feel like he has to "push to keep up". At the same time, he's a planner, and planning this trip is really keeping him motivated to stay on top of his health as best he can. I just don't want either of us to plan something that's not feasible.