New disability

[Hurricane Gal]

I have been hanging out on the other boards planning a trip to WDW with my DH in October.
I decided to check this board out and found some good information.

I am a nurse, but have recently started kidney dialysis and I am on a transplant list. I have been to disney before and know how tiring it can be and the last time my legs swelled and I was unable to wear shoes or walk.

Normally I do not look sick, but due to hip pain, I do walk with a limp and I do have a state handicap sticker for parking.

My question is: Do you think I should get a GAC card during my first day just in case? Also, how available our the ECVs at Disney. I have learned how to pace myself, but I do not want to burden my husband with my tiredness. I am going to dialysis on Thursday the morning we leave, but I plan to skip Saturday and dialysis on the Tuesday evening we arrive home. I think I will be OK, but want to have a "back-up" plan---just in case.

Also, I am taking meds that need to be refrigerated (just in case) do you think asking for a refrig (even if the meds are not used) would be wrong?

Should I bring a letter from my nephrologist as proff of my Dis?

Sorry, so long----but any advice would be greatly appreciated.

 

[Eeyore1954]

Hi! ECVs are fairly easy to get at the parks -- IF you arrive early. AT MK they can go fast; never had a problem getting one at Epcot. At the Studios they tend to go fast, too.

You can also rent one from local companies in Orlando that will deliver them to your hotel. I've never done that though.

 

[SueM in MN]

Welcome to disABILITIES.
A lot of people prefer to rent an ECV (scooter) from one of the off-site medical equipment companies because:
- it's less expensive than renting day by day from Disney
- you are sure you will get one
- you can use it for getting around other places, like your resort (which may be huge) or DD (which for sure is huge).
Here are the places that DIS postere report renting from:
Care Medical:
http://www.caremedicalequipment.com/

Walker Mobility:
1-888-726-6837
www.walkermobility.com

RANDY'S Mobility is in Kissimmee 407-892-4777
http://randysmobility.com/

Colonial Medical
http://www.colonialmed.com/about_cms.html

If you have a ECV, you probably don't need a GA (unless you find that waiting in the sun is too tiring, etc). You don't need to get a GAC the first day, if you find later in your trip that you are just getting too tired, you can always go to Guest Services in any of the parks to request one. You don't need (and they won't want to see) a doctor's letter either to rent an ECV or to get a GAC. If insurance will pay for your scooter, then you would need a prescription.

If you get tired during the day and want to lie down for a while, there is a First Aid station in each park with cotts in individaul cubicles. The staff are very nice and the surroundings are quiet, cool and dimly lit.

For the medication, whether you actually use it or not, you need it in case, so I would ask for a refrigerator and ask for the regular fee to be waived for Medical reasons. Lately, the reports I have seen have said people had no problem with this.

I know other people who were doing dialyis worked with their dialysis center to get a referral to an Orlando center just in case. It sounds like you plan to not need to use the local center, but knowing where to go in case you have problems would certainly help make your trip more stress free.

Good luck and here's some pixie dust for a great trip.

 

[kzcdis04]

Hi,

I am new to this board. My parents will be Florida residents within the near future, and am hoping to have them join us on a short trip to Disney World. My dad recently started Dialysis an dam wondering if there are any centers within a short drive to Disney World. Any help would be greatly appreciated.

Thank you,

Karen

 

[disneyelaine]

I am familiar with dialysis. My mom lost kidney function in 1989 and my dad in 1999. So been thru it with both. We took my dad to WDW in 2000. He refused to use a ECV and thus missed out on most of the parks. He is stubborn! I would highly suggest you rent one at the parks or even rent one at an off site place for the duration of your trip.

My dad did get dialysis while we were there. His dialysis center set it up with a center in Orlando. Request this with your/your dad's center well in advance of your trip. They should handle the details for you, give you the time/place, etc. There were I believe 4 or 5 centers in the Orlando area. My dad's was about a 20 min. drive from Port Orleans. Everything went fine.

Best Wishes for a good trip.

 

[Safari Steve]

My roommate's father is on dialysis and they're coming down for a visit soon too. He will be taking dialysis at Celebration Health.
If you plan on visiting the parks multiple days, it may be less expensive to do a multi-day ecv rental from an outside company. I have never done this, so I'm only speculating. I would definitely rent an ecv (roomie's dad will use one, hopefully). An ECV or wheelchair will be much more effective than a GAC as far as limiting the amount of standing or walking you do (often the distance between attractions is FAR greater than any queue you will encounter.)

 

[kzcdis04]

Thank you for your help. I am hoping he is well enough for us to go. We have been to disney several times with our daughter and it is my dream to go with my parents as well.

I have a question about the ECV. If we rent it from outside the park, how do we get it to the parks? Does it fit in the trunk of a car? We will have a car and are hoping to stay at Wilderness Lodge.

Thanks again for the help.

Karen

 

[Cheshire Figment]

Staying at WL should not pose any problem with an off-site ECV. Other than MK, which generally uses a boat from WL, the other parks would be by bus. Depending on the water level in Bay Lake and the Seven Seas Lagoon, you might have to use a bus for the MK also.

If you have a car, a full-size, four-door, sedan is pretty much a necessity. I have a 97 Taurus and for simplicity put the seat of the ECV in the back seat. When I rented cars, a Buick Century was a tight squeeze to get it all in the trunk, a Buick LeSabre was no problem, and a Buick Park Avenue an absolute snap.

 

[faithinkarma]

I just discovered this board and am so glad I did.

I was diagnosed with kidney disease a couple of weeks ago. I now have only 16% kidney function remaining.

Our Disney trip is coming up quickly, but the nephrologist assured me I could still go as dialysis was at least 6 months away.

But I was concerned that the swelling and pain in my feet would make the trip a complete bust. Then I read about ECV rentals, and I am feeling much more encouraged.

How wonderful that everyone takes the time to post their experiences and expertise here. It is so very helpful.

 

[SueM in MN]

Originally posted by faithinkarma
I just discovered this board and am so glad I did.

We're glad you did, too.
Welcome to disABILITIES.
As for distances at WDW, I've read it's just over a mile around World Showcase and the average WDW visitor walks between 3 and 8 miles per day. So, rent that ecv to save your feet from swelling and pain.

 

[faithinkarma]

I did exactly that. Called today and rented one for almost the whole vacation. It gave me a feeling of being in control of the situation, something that I really needed.

 

[aesalsa]

Hi, everyone!

My kidneys failed in 1994 when I was 15 because of meningitis. Fortunately, that was the only lasting effect from the disease. I did hemo for about 4 months, and I always felt tired or sick. I went M-W-F for 3 1/2 hrs. I didn't like being in the hospital atmosphere, I couldn't eat ot drink, and some of the nurses were not very competent.

I decided to do at-home peritoneal dialysis as a long term treatment, and, IMO, it was infinitley better than hemo. I felt SOOO much better because I did it every day AND at home! It does take a lot longer (10 1/2 hours a night), but most of it is done while you sleep in your own bed! Your diet is more lenient, too!

I even went to WDW in 1998. I brought my machine with me (about the size of a computer scanner/printer combo), had all my supplies delivered to the hotel, and I did dialysis in my hotel room while I slept! I walked all around WDW! I asked my doc if I could reduce the nightly time to 7 1/2 hours during our vacation, and he said YES.

In 2003, my father gave me one of his kidneys after doing PD for about 6 years, and I'm doing very well. I waited so long because I was afraid of the side effects of the meds and the susceptibility to infections; besides, I was doing so well with peritoneal dialysis (PD). I graduated high school with the rest of my class and w/ honors, and completed 3 years of college--all while on PD. Before my last semester of college, I had the transplant.

So hang in there. I remember being so depressed when I realized I would have to rely on a machine to keep me alive. And don't even mention the dietary restrictions. I got over it, made the best of it, and I had a great times with my friends and boyfriends through high school and college. And if, for some reason, this kidney fails, I will return to PD until I can get a new one.

If you're interested in this option, talk to your doctor. If there are any questions about it from a patient's standpoint, email me (I don't PM). Good luck, and bless you!

 

[kzcdis04]

aesala,

You have such a positive attitude. I wish you a future of good health.


Karen

 

[faithinkarma]

I was so pleased to see your offer to answer questions. This condition is so new to me that I had a couple of questions that I would love to have answered by someone who has been through it.

But, unfortunately, when I attempted to email you, I received a message saying you had chosen not to receive any emails.

 

[aesalsa]

faithinkarma,

I would be glad to answer any questions! I will try to enable pm. I'll also check to see what the problem is w/ my email. Check back here for an update! Hope to chat soon!

 

[aesalsa]

I enabled pm, and my email is OK. I am off to my birthday dinner now! As I said before, I'll be glad to answer any questions that you have to the best of my ability.