Disney in October

[brandi1leigh]

Sept 25 through Oct 9 iIwill be traveling to Walt Disney World for the Food and Wine festival. It will be my first time traveling on dialysis. I've seen several threads on here about WDW on PD, but I haven't seen a lot about anyone who has done hemo there. I'm a little nervous since I'm traveling with a friend and want her to have a great time too without me complaining about dialysis. Just curious if anyone has any tips, stories, etc or words of encouragement. LOL

[jbeany]

Sounds fun!

NxStage or in-center?  Have you talked with her about her plans while you dialyze?  Is that going to be her time to lounge at the pool?  Does she have things she plans to go see without you?  If it was me, I'd want it understood that I did not expect her to wait around while I took care of my health.  (I spent 2 months living with my sister and her husband while I was on IV nutrition.  He felt guilty about eating in front of me, and I couldn't get him past it.  I think he lost 10 pounds from not eating while I lived there.  I was not happy about it.  I didn't want him to be deprived because of me!)

[kitkatz]

Rent a scooter if you can.  That way you can keep up all day.

[Joe]

I am headed to the World in August, but I do PD so not sure how much I can help. I will ditto the advice of renting an ECV so you can keep up all day. I'm still very mobile, but find I don't have the stamina I use to ( Ok, I'm sure getting older might have something to do with that too  ) Will let you know when I get back how things went and offer up any hints and/or tips.

[brandi1leigh]

ECV's are rented. She needs one too. We have discussed in depth my limitations and that she is free to go off on her own as much as she wants. I'm 36 and she's 65 with a few health issues of her own, so that's a bit of an equalizer. We've also traveled a lot together, although not since I started in-center D. I think I'm just really sensitive to my condition slowing anyone down! She will have to drive me to and from D, as I don't trust myself to drive after dialysis most of the time. But she seems okay with that. We've been to Disney together once before (we left the day after I was diagnosed with kidney disease and told I'd be on dialysis within 2 years), but that trip was with 18 other people, so when I was too exhausted there were plenty of other people for her to hang out with. A little off topic, but just to give you an idea of how I felt on that trip, when I got back I was immediately admitted into the hospital for 4 units of blood as my hemoglobins were in the 7.5 range. And I managed that trip without an ECV and walked all the parks...Trust me when I say I knew that this trip I needed an ECV!
Thanks for the encouragement! I'm really, really excited and really, really scared to go to a center that I'm unfamiliar with. My parents are great and my mom keeps reminding me that there's no point in doing dialysis here at home if I'm not going to live my life. She knows I love Disney and that this is a once in a lifetime trip, so she doesn't want fear to slow me down!

[jbeany]

http://www.disneyonadime.com/

This site keeps popping up on pinterest.  Might be helpful!   ;

[smcd23]

Since you're going to be there for awhile, if it was me, I'd try to plan seeing the parks on non D days and plan other things to do in the evening on the D days. Like restaurants or specific attractions. Allow yourself a buffer if you will to recoup. That heat can be brutal even in the fall. And I agree on the scooter! I'm healthy and I needed one!!!

Which hotel are you staying at?

[MooseMom]

I don't have any advice, but I am thrilled that you are going and know you will have a wonderful time.  WDW is overwhelming for everyone no matter their health status.  I can't wait to hear more about your plans and about the actual trip in October!

[Jean]

You are going to have such a good time you will be able to overlook any minor problems.

[brandi1leigh]

We have pretty easy days planned for Dialysis days, and plan to hit the parks harder on non D days. We purposely planned a longer trip so that we could take it easy, as both of us like a relaxed pace. We are very excited. We will be staying at the new Art of Animation hotel. Our room will have only been open for 1 week when we check in! Disney rep said that more than likely we will be the first ones to ever stay in our room! We've been planning for almost a year. The hardest part so far has been making dining reservations (we booked during a free meal plan offer, so we get our food for free!). Anyway we had to make dining reservations 3 months ago, but I can't reserve my dialysis time until this month, so I'm really hoping I get my requested time, otherwise our dining reservations at night might be messed up. We're also excited because an ex-student of ours (we were both high school speech and debate coaches) now works at the World. So we get to see her. She was on our traveling speech team, so we were pretty close to her.

[MommyChick]

Hi there!
I actually have been going on vacations every year since I started dialysis. I have been on hemo since 2005.
I always make sure I take the packet of all my dialysis numbers for the machine in case they would need them or would have miss placed what your in-center unit would have faxed them. I also make sure I have there ph.# & directions planned out. Normally I don't know what my dialysis schedule will be until the week of vacation, so I will always call that morning they have me scheduled to make sure I'm still scheduled for that time & nothing has changed on there end. On my days I have dialysis, those are normally the days I relax & take it easy on vacation. The days I don't have dialysis are normally the ones I love to pack a lot in. Hopefully your friend can take it easy while your at your unit or rest up for plans later that day.
With it being your vacation most units normally work with you around your schedule if you have things already planned like your dinners. I have never really had any big problems in traveling & doing hemo. I'm sure you will have a blast & enjoy yourself!
If you have any questions feel free to ask. Have fun & enjoy! 
~ Marna

[Grumpy-1]

I'm hoping to be in Disney World in Oct too.  (work - but taking the wife and and daughter).  I've been to Disney a number of time while on D. But I do PD.  The hotel was VERY GOOD at delivering to our room all the supplies I had shipped there.  In the past and this too, the wife and daughter and her family will just do their thing while I'm working and doing exchanges. I will join them later.  Have fun and don't worry.  Grumpy

[Rain]

I've travelled a lot since i started dialysis 5 years ago and I do in-center.  As Mommychick mentioned bring your dialysis prescription and numbers and double check with what the hospital has.  I had doctors slightly change a prescription on my when I travelled and it wasn't good, I ended up with blood pressures crashes.  Also ask to double check the numbers they are programming the machine with to make sure it matchs.   Make sure you get your epo shots from your hospital before you travel.  And if you are traveling with epo make sure ther is a fridge in your room.

Another advice that helps me is that I can't really eat after dialysis or it upsets my stomach.  So when my boyfriend and  I went to the west coast the first thing we did was finda grocer store and get some fruit so I could have something small after dialysis. 

Have fun!!!!

[Whamo]

  How about a trip report?  Personally, I'm a Disneyland fan, but I've never gone anywhere except Anaheim.  I think the scooters are a great idea.  In Anaheim you can rent them cheaper across the street, on Harbor Blvd, cheaper than in the park.  This has been the most crowded year at Disneyland, ever, with 50,000 people almost every day, in two parks. 

[Grumpy-1]

Whamo  Here is my report.  Unfortunately,  this was a working trip for me. So while the family played, I attended seminars.   Since I've been to Disney World a couple times, it was not big deal to miss it.  Sorry not much more to add than that. Grumpy