Kidney Transplant Concerns

[kidneydisneygirl]

I got a kidney from my incredible cousin last June and am doing very well! My family and I (mom, dad, brother) will be heading to Disney in less than three weeks now! However, I have some concerns about it and was wondering if anyone has any experience/ideas...

1.) Because of the medications I am on that lower my immune system, I have to be careful around crowds. Obviously, Disney World is crowded, and I'm prepared for that. However, I'm worried about the buses. We're staying at All-Star Movies, and if I remember correctly, they share buses with the other two All-Star resorts (or is that just during the low-crowd season?) How crowded do the buses tend to get, and is there a way to avoid that besides driving? I'm also kind of concerned about having to stand on the buses... I'll probably walk around the parks without a wheelchair for the most part, but standing (especially on a moving bus) would be very difficult. I look like a perfectly healthy nineteen-year-old, so I'm kind of worried about that.

2.) I'm heat sensitive. Any tips about staying cool in the parks (in June- my mom's a teacher, my brother is in high school, and it is the only time we can go)?

Thanks!

 

[Jedana]

Congrats on the kidney!

1. The buses, the monorail, the boats, or drive--those are the only ways to get to the parks. Allstars are bus or drive only.

If you are at all concerned, get a wheelchair. It's none of anyone business why you need one.

You can also get those nose/mouth covers (the ones the dentist/nurses wear) that hook over your ears to wear when you are in crowds or on transportation. Wear once, dispose after. Sanitizing wipes will help, wipe down before you touch anything with your hands, hand sanitizer after.

2. Stay hydrated, get indoors from noon-6pm. Stay out of the direct sun as much as possible. Don't wear dark colors, and stay off the black pavement, I swear it just radiates heat!

DH and DS have "boonie" hats. they drench them in cold water and wear them until they are almost dry, then repeat. They swear it keeps them cool. Also, a misting fan may help.

 

[seashoreCM]

Remember, with a wheelchair you can walk a little of the time, some of the time, or most of the time. Without a wheelchair you must walk all of the time.

If you really want to you could make up a corney T shirt that mentions your medical condition. Remember those T shirts that had a big arrow down and the word "baby" at navel level? How about one that had the words "new kidney" at navel level? Or how about a transparent bag with several (empty) pill containers in it that was hung from the wheelchair arm rest? This should quiet down some of the obnoxious folks.

The monorail can get just as crowded with standing room only as buses.

Keeping really hydrated can result in having to go to the rest room quite often, in turn causing problems waiting in a long line. Not sure if the Guest Assistance Card includes an icon for "wait off to the side somewhere like in the shade" including where you can go to the rest room just before the time on a written slip comes to go in a separate entrance and ride.

 

[dclfun]

Congratulations on getting your kidney- what a wonderful, generous gift from your cousin!

You may want to play things by ear but know that if you do start to tire easily, renting a w/c or ECV might help you enjoy your much-deserved vacation. This would also allow you a seat on the bus and the ability to board first vs. worrying about standing or being jostled. Of course, you may wait longer for a bus and you also have the option of NOT boarding a full bus if you are walking.

One suggestion I would make is to try a cooling vest. Perhaps your physician could prescribe one for you so that you don't become overheated. Many people with MS, for example, have reported that a cooling vest really helps them in the parks.

Know that you can rest in a/c in any of the first aid locations if you become tired or overheated. Some locations have private rooms with cots and others have cots that are separated by curtains. Take advantage of indoor attractions such as shows/theaters or even dining indoors at a TS location during the afternoon when it tends to be the hottest. Also take advantage o the evening extra-magic hours and rest or swim at your resort in the afternoon.

I hope you have a wonderful vacation and that everything goes smoothly!---Kathy

 

[honugirl]

I have immune system issues because I have no adrenal glands (they sit atop your kidneys and make all your stress hormones). I take steroids to stay alive.

I stay fairly healthy with a decent vitamin regimine and I try not to touch anything at WDW. I wear clothing with pockets (if it doesn't have pockets, I don't wear it there) and I constantly keep my hands in my pockets so I'm not touching railings, etc.

I look fairly healthy, but if necessary, I will break down and get an ECV and use it.

As for buses, they get crowded unless you do off times. I sleep late, never go to rope drop and I either head back to the hotel before fireworks at whatever park or I linger in the parks for an hour or so, then head to the buses. They are usually not crowded with that strategy. If you see that you're not going to get a seat on the bus, you can wait for the next one. Only you can guarantee yourself a seat.

On the monorails, if I can't travel at an off time, I try to make myself as big as possible to create a buffer around myself.

 

[LockShockBarrel]

Honestly I don't think Disney presents any more of an immune issue than a mall or school or any public place would. People are still around you and still touching things, so just be smart about it. Take hand sanitizer and anti bacterial wipes, wash your hands often and well, especially before eating. Avoid touching a railing then touching your face (around your mouth nose and eyes..which is really most of your face ) If you feel comfortable with it, go ahead and wear a mask..but be prepared for some looks, its just a fact that people are going to wonder what its for. I agree with the buses, try not to travel at peak times during the day or wait for the next bus to guarentee a seat. Also remember that Disney is a lot of work you're not used to, it's normal to feel a bit run down, but if you feel like it's too much, don't push it.

 

[honugirl]

Actually, depending on where you live, Disney does present a much greater risk than the mall or school or normal public places. I live in a relatively small town. My mall doesn't have tourists from all over the world bringing in new germs my body has never seen before. For some, that is a huge risk.

 

[Iron Mouse]

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[chicagoshannon]

My sister had a kidney transplant when she was 16. She went on many Disney trips after that. Her first was just 6 months after transplant. She never used a wheelchair.

Don't worry too much about germs. I don't remember her ever getting sick.

However be very cautious of the heat. I remember my sister passing out on a couple different occasions. Bring a mister fan and take frequent breaks. I don't know if they do GAC cards for adults but if they do get a doc. note and get one. Standing in line in the heat will not be good.

Be sure to use TONS of sunblock also. I know the meds my sister is on cause her to burn extremely easily.

 

[LockShockBarrel]

People are also more cautious about germs at Disney. A good deal of people are following a stricter hygiene routine by using hand sanitizer and anti bac wipes, more than they would use at a mall. I still think a mall is dirtier.

Anyway the OP has a lowered immune system, not a destroyed immune system. I'm not trying to make light of it, I've been around transplant recieptients since I was 3, my point is so long as you're smart about things you'll be fine. In the rare case where something might happen, Disney is great at helping you get to a doctor.

 

[disfan07]

I would not be too concerned with the immune system issues. However, I would definitley talk to your doctor abut any specific concerns because they can probably address those questions.

I have been on immunosuppresents for 2 1/2 years. I am also put on steroids before we go on vacation as a precautionary measure (flying seems to excacerbate my asthma....prednisone helps). In that 2 1/2 years I have been to WDW 2 times and DL 4 times. So far, so good.

My biggest suggestion would be to bring hand sanitizer with you. I carry a lot of it and use a lot of it. I also carry hand wipes with me but those are more because of my peanut allergy. I am severely allergic to peanuts so I always wipe my hands after rides, buses, etc and I always wipe down the tables before eating at CS because you never know.

As my immunologist has told me, each person tends to respond to immunosuppresents differently. Some people can be on a low dose and catch every germ in existence while others can be on higher doses and rarely get sick. It also depends on if you have any other underlying conditions. SO I would defintely talk to your doctor and see what they recommend for precautions.


Your doctor might also have specific directions for what you should do if you get sick, etc. So I would consult with them about that as well.

 

[Escape2Disney]

I'm also immunosuppressed with kidney and digestive challenges. My suggestion to you is to get a Camelbak. I filled mine with filtered water at least twice a day (I'm sensitive to the junk in tap water). It's a great way to stay hydrated.

I'd also suggest listening to your body. Its easy to push to 'just one more ride' when you know you need a break. Trust me, it's not worth it. Taking a break can mean a much happier trip for all.

One more thing .... Keep a card with your medical info somewhere accessible (maybe in your lanyard). IF something happens, it'll save valuable time.

I hope you have a wonderful time!

 

[Bete]

and I use them not only on my hands, but I will wipe a table down and chairs before eating on it. Without a doubt they are used in restrooms. Use them when you get off the bus, too. Buses are your only choice for getting around if you don't want to use a car. For the bus I think a wheelchair is best. You will be assured that you won't have to stand and you will get more space, too. You and your party are allowed on the bus first with a wheelchair or scooter. If you are worried about others coming too close have your family stand around you; so, others can't get near you; this is sort of a protection screen for you. You can use that technique in ride queues, too. There are times you can leave the wheelchair, if you don't want to use it. You have enough in your party to help push you. You may want to consider renting a scooter; although, it's more expensive. With a scooter no one will have to push you.

I think alternating between rides, shows, parades and eats will be your best bet to stay cooler and stay out of the sun, here and there. Find shaded areas for parades. Wearing a hat will help especially with the sun. I have heard many say wonderful things about cool vests; they work. There are bandana like head bands that can be worn for cooling, too. You need to refresh them as they dry up. You might want to consider an umbrella for sun shielding, too.

Taking a break and knowing your limits will be important. You can rest at the first aid stations in each park if you don't want to go back to the resort all the time. They actually have cots were you can lay down. It's air conditioned, too.

I know your age tells you to keep on going and going, but your body might say slow down. Let your doctor know your plans and see what suggestions
the doc gives you like how long you should be in the park each day.

 

[akhenaten]

I got a kidney from my incredible cousin last June and am doing very well! My family and I (mom, dad, brother) will be heading to Disney in less than three weeks now! However, I have some concerns about it and was wondering if anyone has any experience/ideas...


Thanks!

Congratulations on your new kidney!!! Thank so much for posting this... i just got a kidney this past January and will be heading to WDW this July.. so I have the same concerns!

I was also wondering about some of the rides... I know my doc told me to walk not jog for exercise. So i do not know if rides like Mission Space or Tower of Terror etc. would be ok. I will check with him at my next appt.

 

[mom3sonstt]

Congrats on your new kidney! I received mine 3 months ago. I am planning a trip to WDW in august...it will be about 5 1/2 months post transplant. My doctors have only told me to limit my sun exposure (wear a hat, use sunscreens, etc) due to some of my medications. I do carry a travel size bottle of hand sanitizer that I use periodically. I am not obsessive about wiping things down or using it constantly. My mother had a transplant 15 years ago and wore a face mask quite a lot the first few months. After my transplant I asked about wearing a mask and they said it wasn't necessary.

As for crowded buses, I would try to avoid the busiest times if possible, I would especially avoid if at all possible being around someone who looks or acts like they are sick. I don't know how many you are traveling with, but maybe try to stay in between "your" people instead of sitting by strangers. I wouldn't stress too much over it, but wouldnt be reckless.