Going to Disney with End Stage Renal Disease

[sweetb]

Hello everyone! My name is Beth and I will be going on a last minute trip to Disney on Memorial Day Weekend.

I have renal disease. I was on dialysis for five years, got a transplant that lasted for about eleven years and now I'm once again in renal failure. My Docs think I only have a few weeks left before needing dialysis. Once I'm on dialysis I will have to go on the kidney transplant list again and be tied to a machine three times a week. Not much freedom there.

Sooooo, I decided to take my two children to Disney as a last hooray sort of thing. My kids are four and five and have never been to Disney. I don't have much money so we are only staying for a few days. Two days at Disney and one day at Sea World.

My 21 and 25 year old cousins are coming on the trip with me to help out. I reserved an ECV for the three days and it should be at my hotel when I arrive.

I have a few questions I am hoping you all can help me with. I have not been to Disney since I was 12 so I really don't remember a thing. My Aunt says that you have to take a ferry or a tram from the parking lot into the park. Will my ECV fit on these? How will I get my ECV from the parking lot to the park? I plan on renting a car as we are not staying at a Disney property. I do have a handicapped parking placecard but I hear that those parking spots are still far away?

Bascially my condition makes me feel a bit nauseous in the morning and VERY tired. I also don't do super well in the heat. My plan is to get to the park early and then leave during mid day when it's the hottest to take a nap or swim in the pool at the hotel and then come back at night. Will this be a pain in the butt with an ECV? Is there anything else you reccomend that will help me with the hot weather?

Also, will it be hard to walk with my party in the ECV? I know memorial day is not the best time to go, but that is when my Aunt could get her timeshare. It's only costing me 175 dollars for the four nights and three days. And I don't have long before I am in total renal failure.

I'm SO excited about going to Disney and giving my kids this experience. I don't plan on rushing to try and do everything. I just want to enjoy myself as much as possible while I'm there. It's been hard on my kids having a sick mommy. I really want them to have as much fun as possible.

Thanks!!!

 

[dclfun]

Sorry to hear you are needing to go back on dialysis. My 23 year old son is in renal failure, on dialysis, and finally got put on the transplant list last summer after waiting for 2 years just to get on the list- he is B+ so it isn't easy to find a match. I can understand your concerns about stamina and being tired. First, you won't have any trouble getting your ECV on any WDW transportation including the monorails and ferries. You can always rest in First Aid if you get tired, but I know this will not take the place of a longer break. There's no getting around the fact that it's harder to be off-site. Do you have a lightweight ECV that's easy to break down?

You're right that the h/c parking isn't really right by the entrance, esp. at MK where it's a long walk to transportation. The tram brings you closer but then you can't bring an ECV on the tram. You'll be able to ride at least!

My biggest concern for you would be adequate hydration. My son tends to get short of breath when he has fluid retention but if you are perspiring, you need to replace what's lost or you'll have muscle cramps and weakness. Are you on a restricted diet right now? If so, we were able to ask for things to be prepared without salt- we just had to make the request in advance for quick-service locations in the park or be sure a chef assisted with preparing his food separately.

Perhaps you could get your insurance to cover a cooling vest. At the very least be sure to use lots of sunscreen and/or a large hat to shade your face. We'll be there Memorial week as well but are staying on-site and probably won't spend lots of time in the parks due to the heat and crowds. You have the right attitude to not rush or try and do too much. I hope you make some wonderful memories with your children!---Kathy

 

[SueM in MN]

I have not been to Disney since I was 12 so I really don't remember a thing. My Aunt says that you have to take a ferry or a tram from the parking lot into the park. Will my ECV fit on these?

Your Aunt is correct. The parking lot at MK is not right at the park. A large lake, called Bay Lake separates the parking lot from MK.
Guests can ride across the lake on large ferry boats or around the lake on the monorail. Both the ferry boats and the monorails are wheelchair and ECV accessible.
There is more information about these in the disABILITIES FAQs thread near the top of this board or you can follow the link in my signature to get there. Post #1 of the disABILITIES FAQs thread is an index that tells which thread has which information.

How will I get my ECV from the parking lot to the park? I plan on renting a car as we are not staying at a Disney property. I do have a handicapped parking placecard but I hear that those parking spots are still far away?

The place where you catch the monorail or ferry boats is called the Ticket and Transportation Center.
There is tram service, which is not ECV accessible, that goes from the regular parking lot to the Ticket and Transportation Center.
The handicapped parking lot does not have tram service. People who can't walk distances, but do not have an ECV have found it is a long distance to walk. Since you have an ECV, I would not be concerned.

Bascially my condition makes me feel a bit nauseous in the morning and VERY tired. I also don't do super well in the heat. My plan is to get to the park early and then leave during mid day when it's the hottest to take a nap or swim in the pool at the hotel and then come back at night. Will this be a pain in the butt with an ECV? Is there anything else you reccomend that will help me with the hot weather?

Keep in mind that it can take as long as 30-45 minutes to get from the park to your car, depending on how busy it is and how long you have to wait for the monorail or boat.
If you need a short wait or time to get out of the heat, you can go to First Aid and use on of the cots there. It is cool, quiet and dim and the staff are very nice. The location is marked on the park maps.
If you can get there early, it will be less busy and you will be able to get on more things with short waits. You may want to look into one of the tour planning services like Tour Guide Mike.
Going early and then coming back in the evening will help you to avoid the heat.
Also, keep in mind that using an ECV does require a certain amount of concentration, which may be tiring for you, especially if you are battling nausea. Some people find that it works better for them to use a wheelchair than an ECV because the ECV makes them too tired. I'm not saying this will happen, but you may want to keep the phone number for the rental place handy in case you decide to trade it for a wheelchair.

Also, will it be hard to walk with my party in the ECV? I know memorial day is not the best time to go, but that is when my Aunt could get her timeshare. It's only costing me 175 dollars for the four nights and three days. And I don't have long before I am in total renal failure.

MK can be kind of congested, which does make it harder to stay together.
For those situations where the ECV would use a separate access, the usual 'party' would be 5 people plus the guest using the ECV (so a total of 6).

I'm SO excited about going to Disney and giving my kids this experience. I don't plan on rushing to try and do everything. I just want to enjoy myself as much as possible while I'm there. It's been hard on my kids having a sick mommy. I really want them to have as much fun as possible.

Thanks!!!

Hope you have a great time.

 

[mom3sonstt]

somewhat off topic - but since it has been so long since you were on dialysis before, have your doctors mentioned/offered/suggested doing peritoneal dialysis instead of hemodialysis? I have been on the transplant list for about 5 years, and have been doing peritoneal dialysis for 3 years now. I have gone to Disney several times and just take my dialysis stuff with me (well, some of it I have delivered). My brother used to do hemodialysis and it seemed like he never felt good - the days that he did the dialysis he was tied up all morning and felt crummy the rest of the day. The next day was a little better. I never wanted to have to do hemodialysis. He eventually switched to peritoneal also. I am fortunate enough to only be hooked up to it 8 hours a day and do it at night while I am sleeping, so my days are "normal". I do look extremely pregnant from having to carry the dialysis "juice" around - but I take that as a fair trade for not having to go in to a center 3 days a week. I do have to make sure I get to bed on time if I have something scheduled early in the morning. But after 3 years it is all just routine. My husband and I also travel other places for week-end getaways. My post-transplant goal is a trip to Las Vegas. We have another couple we want to go with, but are waiting until I no longer have to haul all my stuff along because we want to do some "road-trips" while out in that area and my stuff takes up too much room for that.

 

[Bete]

closer. You won't gain a lot, but every inch counts. If someone else can drive your vehicle and park it in the handicap zone at least you could get as close as possible to the entrance. The handicap spots can get filled up especially when you return at night especially at parks like Hollywood Studio. We do this a lot with setting up the ECV as close as we can and then someone else parking the car.

There are cool down head bands that are reasonable in cost. You can wear them around your neck or tie them up on your forehead. You will have to refresh them through the day with water, but there nice to have on those hot days. If you can get some ice for it the cooling would be better on the band. Refrigerate them each night; so, they are cool for each morning. There are mist fans that can help, too. They run on batteries and you get a spray of water where you want, when you want it.

There are first aid stations in each park. You can rest in air conditioning. They have beds for a nap, too. You can get water there, as well. If you get distress they will help, as well. They will get an ambulance if needed.

ECVs have access to handicap spots at shows, parades, fireworks, etc. This may help when you are in the parks. This includes those with you in your party. There are rides where you park the ECV very close and walk just a little bit to get on the ride. In some instances, there are wheelchairs at the rides that you can transfer to, as well. You will need to get pushed to the ride. Some rides have it so you can go on them with the wheelchair.

 

[sweetb]

Thanks for the helpful advice everyone!

DCLfun, I'm sorry to hear that your son is also on dialysis. I am also B+ so I know how hard it is to get a kidney with that blood type. I waited five years on the list before getting my kidney. I am hoping to try and find a live donor this time b/c live donor kidneys tend to last longer. I really don't want to go through a kidney trasplant every eleven years or so!

I've never heard of a cooling vest but I will have to check that out! Thanks for the idea.

SueM, thank you for explaining the parking and entrance set up for me. Believe it or not, this is something I worry about. Now that I have a better understanding I feel more prepared.


Moms3sonstt, for me I find that hemo is the best option. I just can't get past having anything inside me. I don't want any tubes hanging from my body. I would rather go for treatments than deal with that. I know it would make it easier for travel but just the idea of peri. freaks me out.


bete, thanks for the idea on the cool down bands. Do you know where I can find them? Thanks!

I did get a dr.'s note that advises that I be out of the heat as much as possible. Are there many rides where there is an air conditioned or at least cooler place to sit and wait? That would be very helpful.

 

[SueM in MN]

I did get a dr.'s note that advises that I be out of the heat as much as possible. Are there many rides where there is an air conditioned or at least cooler place to sit and wait? That would be very helpful.

Follow the link in my signature to the disABILITIES FAQs thread. Post #6 of that thread is about Guest Assistance Cards.
Almost all attractions have shaded lines and most have fans and/or air conditioning, even in outdoor lines.

Most places do not have a cooler place to sit and wait, but would have a place out of the sun (often in the 'regular' line, not a special place.

Are there any specific attractions you are thinking of - we could help you with more specific information if you do.
Which parks are you planning to do during your 2 Disney days (I guess I was assuming Magic Kingdom, but you may have something else in mind).

Keep in mind that the hardest part (and most of the sun/heat) will not be while you are waiting for attractions, but while you are going between places.

 

[sweetb]

I plan on going to MK one day and then park hopping between MK and Hollywood Studies the next day. I thought MK would be the park where we would want to spend the most time b/c of the kids.

I'm going to try to make a list of things we really want to do and just aim at that instead of wandering around and then feeling like we didn't get a lot done that we wanted to. I'm not really sure of all the rides. I am reading up on them now. I don't do good on the big, scary rides b/c of my heart so we won't be doing those as my kids are also too small for that so I guess that is good. I'm sure those rides gather big crowds.

I know that it will be hot and sunny all day but I'll feel better if I'm not in a line and get hot and be able to go inside somewhere or get something to drink and cool off if I have to. I'm a bit claustrophobic and it gets worse when I feel ill. I would hate to feel trapped in a really long line and then be super hot and feel sick. I'll try to prepare myself for that though.

I'm super glad to hear that many lines have fans and/or air conditioning. That is a relief!

 

[Bete]

I did a search and I think the best website place to get the cooling head bands would be http://sparklingearth.com/

On this website home page there's a menu list of products on the left side. Choose the Artic Bandana (cool tie, neck coolers) category. The prices range from $2.99 each to $5.99 each without shipping costs. Also, there are other cooling products on this site that you may like, as well. Some reports here say you can find this product sometimes at Wal-Mart or camping stores.

Become acquainted with two, helpful aids. The first one is GAC (guest assistance card). You need to explain your situation to the guest services cast member and you may get cooler places and better accomodations to wait for rides. This is not a shortcut to the rides, but it can help give you a better environment to wait in. Next, fastpass is a must! On the more popular rides you get a time to return to the ride and by doing this you get to come back and be in a shorter line. You are only allowed one at a time, but you can get more through the day. There's a time window on the fastpass. Once the time window ends you can get another fastpass for the same ride or a different one. You use your park ticket in a special machine to get a fastpass. Everyone who wants to do it in your party needs to do their park ticket in the fastpass machine and get a fastpass time. One person can take all the park tickets and get the fastpasses for everyone.

 

[christymarie]

For sun/heat sensitivity most of the lines are in the shade or under cover with a few exceptions. The bigger issue is just walking around the park. The pavement is dark and some of the parks/lands can feel very hot because of it. I would suggest bringing some kind of head covering for your head and face and trying to take advantage of shows. Maybe your cousins can go with the kids to a couple of rides while you duck into an air conditioned show. I'm sure you are not wanting to miss out on seeing them having fun but it may prolong your ability to stay in the parks.

Just go slow and take advantage of shops and shows.

 

[mom3sonstt]

Yeah - I guess I understand the whole creepiness-factor of having a tube sticking out. You do get used to it after awhile, and for me anyway, it was a much better option. But I am also about 45 minutes away from a dialysis center, so on top of the treatment time I would have an hour and a half driving time each time. In our Illinois winters I try to drive as little as possible so I would hate to be commited to medically having to drive that far that often in crummy weather.

Good luck this time around! I am an O and can only receive an O....have been waiting just over 5 years now......

 

[toniosmom]

I don't really have any advice to add to previous posters, so I just wanted to say that I hope you have a wonderful trip with your children.

God bless.....

 

[sweetb]

Yeah - I guess I understand the whole creepiness-factor of having a tube sticking out. You do get used to it after awhile, and for me anyway, it was a much better option. But I am also about 45 minutes away from a dialysis center, so on top of the treatment time I would have an hour and a half driving time each time. In our Illinois winters I try to drive as little as possible so I would hate to be commited to medically having to drive that far that often in crummy weather.

Good luck this time around! I am an O and can only receive an O....have been waiting just over 5 years now......

Yeah, the dialysis unit is not far. The first time around, my Granda drove me back and forth. We only had bad weather a few times and we made it.

I so hope that you get that call for a transplant soon! I know five years is a long time. That is how long I waited. Good luck!

Toniosmom, thank you for the well wishes! I'm getting really excited and my kids are just bouncing off the ceiling everyday as they just can't hold in their excitement.

 

[bookwormde]

Have fun go to the parks early and spend mid day relaxing at the resort recoup and held back one the sun starts down. Have a good trip and take care of yourself.

bookwormde

 

[sweetb]

I just wanted to update...I got back from Disney and I had a wonderful trip! My scooter was a life saver for me. I never could have walked around the park all day in the heat. The scooter was great. I rented one from Walker Mobility and the battery lasted all day. It was easy to drive and I had no problems getting around on it. I did get a GAC to help me stay out of the sun as much as possible but I didn't even use it. Most lines were out of the sun and they had fans on many of the lines. The indoor attractions helped me get cool and one day we went back to the hotel to swim and cool off.

Everyone was so nice and my children were thrilled. I want to thank everyone for your advice. It truly helped me and my kids have a great Disney vacation.

 

[SueM in MN]

Glad to hear you had a good time.