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Author Topic: Traveling to Disney World with NxStage  (Read 3043 times)
swramsay
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My son, Scotland, is my heartbeat.

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« on: May 15, 2009, 06:31:26 PM »

Thanks already for the great posts about traveling with a NxStage. I am going to Disnsey World next month with my son and husband for 9-14 days. We have reservations for 9 days but I am thinking about extending it. My  unit is having the dialysate, cartridges and waste lines shipped ahead to the hotel. I should probably ship a box of saline ahead myself so it's one less thing to worry about. The supplies including the NxStage heater, scale etc that I need to fit into my suitcase are quite heavy and take up much needed space.

Have some of you shipped incidental supplies ahead to your destination or do you pack them to take with you?

I did just call Delta about the medical equipment because I don't want any hassles. They made a notation on my reservation stating I can't be charged for it. Thanks to the tips from you and the airline phone numbers that Bill Peckham provided.

I will call the hotel. I'm going to have at least 18 boxes of dialysate shipped to them plus other boxes. I hope they are OK with that - and they will be willing to keep some of them out of the room until I need them!

Thanks for all your help. I am very excited to be able to travel with the NxStage. I am looking forward to being able to dialyze after a full, fun day in the room with my family instead of taking 5 hours+ a day out of my vacation to get to a center.  :cheer:

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JUST KEEP GOING.
March 2009: NxStage Pureflow Home Dialysis 5-6 x's week
Sept 2008: In center dialysis
Sept 2008: Left kidney removed (bladder cancer)
April 2006: Right kidney removed (bladder cancer). Chemo for lymph node mets.
April 2004: Bladder removed plus hysterectomy & neobladder made (bladder cancer)
Feb 1994: Original bladder cancer diagnosis & beginning of this journey

www.marykay.com/wramsay
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #1 on: May 16, 2009, 07:09:40 PM »

I'm not on NxStage, I'm on a PD cycler but the issues are similar.  Baxters forward all the fluid for the machine to wherever I want, but I need to take some of the bits and pices for the machine myself.  You get really good at cutting down the clothes etc you need - cos you need all the space in the suitcases for PD stuff.  However, the real bonus of this is that you've used it up by the time you're coming home, so you have lots of space in your suitcases for shopping!  We stayed at Circus Circus in Las Vegas and they were fantastic.  Your hotel will probably be great.  I hope so.  Good luck.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
KT0930
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« Reply #2 on: May 16, 2009, 07:11:18 PM »

We traveled to Disney while I was on PD, and I had supplies delivered to (off-site) hotel ahead of time. It was not a problem at all. I talked to Fresenius, found out what their requirements were, then called the hotel and let them know it was coming. The hotel was even nice enough to remove a nightstand from the room to make space for my machine.

One suggestion I'll make is to rent a scooter. I was worn out enough with it, I can't imagine trying to make through the whole visit walking all day everyday. Plus it helps you cut some of the lines   ;) If you go during the busy time and have a way to get it to the park every day (staying on-site?), rent it off-site. It's almost the same price, but the ones in the park are first come, first served. Also, you may want to schedule a day or two off to rest rather than visiting the parks every day. It's VERY tiring!

Have fun! It was a great trip for us!
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"Dialysis ain't for sissies" ~My wonderful husband
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I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #3 on: May 16, 2009, 07:23:06 PM »

Yes we hired a scooter at Disneyland too, and it was great going straight to the front of the lines.  Felt a bit silly standing up and walking then, but I really could not have managed the queues.  Disneyland were fantastic and they have really nice first aid rooms.  You could go there and just have a lie down if you wanted in the middle of your day.  They are soooo helpful.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
KT0930
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« Reply #4 on: May 16, 2009, 07:27:11 PM »

Hanify, I felt exactly the same way about standing up and walking to the ride (and at Epcot, I couldn't take it into the Mexico exhibit easily, so I didn't - felt even worse about it there), but I figured I and my family knew I needed it, and if anyone wanted to make an issue of it, I'd gladly show them my Medicare card and PD cath.  >:D
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"Dialysis ain't for sissies" ~My wonderful husband
~~~~~~~
I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
swramsay
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My son, Scotland, is my heartbeat.

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« Reply #5 on: July 10, 2009, 07:59:06 PM »

We just returned from a 15-day trip to Disney World in Orland. NxStage shipped 30 boxes of dialysate, 3 boxes of cartridges and a box of warmer bags to the hotel a couple of days before we arrived. I brought the saline, drain lines and daily supplies with me in a separate suitcase. We stayed at the Radisson Orlando Lake Buena Vista. The hotel kept all those boxes in their office until I got there without any complaint at all. They also had to throw away all the trash every morning. They were exceptionally accomodating.

We flew out on Alaska airlines. No questions, no problems. They didn't question or charge me for the dialysis machine or the suitcase of supplies. Wonderful. UNITED on the way back was a disaster. They had no clue of the FAA regulations regarding medical equipment and tried for over an hour to refuse to check the dialysis machine because it was over 99 pounds because 'the belts don't take that much weight". Then they tried to charge me over $340 for the 'extra luggage including the machine'. I am glad I had the FAA letter with me. I think that's the only reason they finally let us on the plane. We almost missed the flight. It was horrible. When we got to Seattle, my dialysis machine didn't arrive with us. It was delayed on a later flight so we had to go back to the airport to get it. I won't fly United again.

Aside from the United experiece, we had a great time. It was so nice to be able to dialyze in the room in the morning while my son slept - or at the end of the day - whatever worked best for us on any given day.
Logged

JUST KEEP GOING.
March 2009: NxStage Pureflow Home Dialysis 5-6 x's week
Sept 2008: In center dialysis
Sept 2008: Left kidney removed (bladder cancer)
April 2006: Right kidney removed (bladder cancer). Chemo for lymph node mets.
April 2004: Bladder removed plus hysterectomy & neobladder made (bladder cancer)
Feb 1994: Original bladder cancer diagnosis & beginning of this journey

www.marykay.com/wramsay
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