I Hate Dialysis Message Board
Welcome, Guest. Please login or register.
October 20, 2019, 10:47:58 AM

Login with username, password and session length
Search:     Advanced search
528867 Posts in 33253 Topics by 12317 Members
Latest Member: Caregivingsister
* Home Help Search Login Register
+  I Hate Dialysis Message Board
|-+  Dialysis Discussion
| |-+  Dialysis: Traveling Tips and Stories (Moderator: Vt Big Rig)
| | |-+  Disney in October
0 Members and 1 Guest are viewing this topic. « previous next »
Pages: [1] Go Down Print
Author Topic: Disney in October  (Read 4368 times)
brandi1leigh
Full Member
***
Offline Offline

Gender: Female
Posts: 112


WWW
« on: June 28, 2012, 02:42:58 PM »

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
Logged
jbeany
Member for Life
******
Offline Offline

Gender: Female
Posts: 7536


Cattitude

« Reply #1 on: June 28, 2012, 06:25:28 PM »

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!)

Logged

"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

kitkatz
Administrator/Owner
Member for Life
*****
Offline Offline

Gender: Female
Posts: 16982


« Reply #2 on: June 30, 2012, 11:10:47 PM »

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



lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Joe
Elite Member
*****
Offline Offline

Gender: Male
Posts: 1166


« Reply #3 on: July 01, 2012, 10:51:37 AM »

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  :rofl;) Will let you know when I get back how things went and offer up any hints and/or tips.
Logged

Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
brandi1leigh
Full Member
***
Offline Offline

Gender: Female
Posts: 112


WWW
« Reply #4 on: July 01, 2012, 05:05:50 PM »

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!
Logged
jbeany
Member for Life
******
Offline Offline

Gender: Female
Posts: 7536


Cattitude

« Reply #5 on: July 01, 2012, 05:23:29 PM »

http://www.disneyonadime.com/

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

"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

smcd23
Sr. Member
****
Offline Offline

Gender: Female
Posts: 528


The patient, the baby and the donor - October 2010

WWW
« Reply #6 on: July 01, 2012, 07:08:33 PM »

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?
Logged

Caregiver to Husband with ESRD.

1995 - Diagnosed with vesicoureteral reflux and had surgery to repair at age 11. Post surgery left side still had Stage I VUR, right side was okay. Both sides were underdeveloped.
2005 - Discovered renal function was declining, causing HBP. Regular monitoring began.

March 2008 - Started transplant evaluation for preemptive transplant due to declining function.

September 16, 2008 - Transplanted with my kidney.
September 18, 2008 - Kidney was removed due to thrombosis in the vessels in and leading to the kidney.

October 2008 - Listed in Region I

May 2009 - Started in Center Hemo
January 2010 - Started CCPD on Liberty Cycler

June 15, 2012 - Kidney transplant from a 43 year old deceased donor
June 22, 2012 - Major acute rejection episode and hospitalization began
June 27, 2012 - Nephrectomy to remove kidney after complete HLA antibody rejection. Possibly not eligible for another transplant, ever again.

Now what?
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 10756


« Reply #7 on: July 01, 2012, 09:12:27 PM »

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!
Logged

"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Jean
Member for Life
******
Offline Offline

Gender: Female
Posts: 6113


« Reply #8 on: July 01, 2012, 11:46:31 PM »

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

One day at a time, thats all I can do.
brandi1leigh
Full Member
***
Offline Offline

Gender: Female
Posts: 112


WWW
« Reply #9 on: July 05, 2012, 02:22:32 PM »

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.
Logged
MommyChick
Full Member
***
Offline Offline

Gender: Female
Posts: 325


Me & my precious Miracle !!!

« Reply #10 on: August 06, 2012, 11:25:14 PM »

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!  :beer1;
~ Marna
Logged

~ Hello All, My names Marna ~

- 1995 - 12 yrs old found out my kidneys were both failing
- 1996 - Dec. 3 I received my 1st kidney transplant at age 13, after 7/mths on the waiting list
- 2005 - In Aug. transplant failed after 9.5 years, had to have a nephrectomy due to being very ill & massive hypertension
           - End of Aug. 1st time on dialysis
- 2006 - Had my fistula placed & ready to go
- 2010 - My little Miracle was born 6/mths into the pregnancy, weighing 2.4 lbs & 13.25 in long
          - Found out my PRA is 100% & I have antibodies that CAN'T be decreased
- 2013 - Oct. 2nd  *** I finally received my kidney!!! ***
          - Dec. 3rd I had 3.5 parathyroids removed, due to them interfering w/my new kidney.
Grumpy-1
Full Member
***
Offline Offline

Gender: Male
Posts: 466


Make me the person my dog thinks I am

« Reply #11 on: August 07, 2012, 05:16:09 AM »

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
Logged

Make me the person my dog thinks I am
Rain
Full Member
***
Offline Offline

Gender: Female
Posts: 323

« Reply #12 on: August 07, 2012, 11:07:54 AM »

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!!!!
Logged

1988  Diagnosed with reflux and kidney damage
2006-  Diagnosed with Renal Failure and start dialysis in centre with catheter
2007- Fistula created and in centre hemo with fistula
2012- Fistula clotted and central line inserted
May 2014- Received Kidney from deceased donor
Whamo
Elite Member
*****
Offline Offline

Posts: 1024

« Reply #13 on: December 11, 2012, 06:53:08 AM »

 :clap; 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. 
Logged
Grumpy-1
Full Member
***
Offline Offline

Gender: Male
Posts: 466


Make me the person my dog thinks I am

« Reply #14 on: December 11, 2012, 03:23:25 PM »

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
Logged

Make me the person my dog thinks I am
Pages: [1] Go Up Print 
« previous next »
 

Powered by MySQL Powered by PHP SMF 2.0.15 | SMF © 2017, Simple Machines Valid XHTML 1.0! Valid CSS!