Dialysis Disney Lovers:Need Dr. note for Guest Assitance Card?

[KatGat]

We leave tomorrow for our trip but totally forgot about a doctor's letter, but can Guest Services help us if we go talk to them? My husband is a dialysis patient. He's not planning on being in a wheelchair, but will be weak. He probably won't be able to stand too long if it's a long line and such. Do other end stage renal patients have any advice for what worked for them?

[Hammer]

As someone whose Mother was a renal patient (she received a transplant a year ago) and went to WDW while on dialysis, you should reconsider the wheelchair. It made for a much more pleasant WDW experience for my mother.

[merlinmagic4]

I highly doubt they'd question you. Good luck to you! I know how exhausting it is - my 10 year old son had a transplant last year. I hope you have a wonderful trip! Is your husband a transplant candidate?

[KatGat]

Yeah, I don't know if it's a pride thing or if he doesn't want to inconveinence anyone, but he's reluctant to use a wheelchair. He doesn't want to ask for special considerations at the parks, but it will be too difficult for him without help. I'm hoping that they can offer that for him.
He's not listed yet because he has some other health issues that have to be addressed before the team will accept him, but we're optimistic.
I only have lab-type papers from his dialysis center, but you can't help but notice the access site on his arm. It generally generates lots of stares. What kind of assistance were you guys offered at the parks?
Thanks so much for answering (we leave in a few hours).

[merlinmagic4]

Yeah, I don't know if it's a pride thing or if he doesn't want to inconveinence anyone, but he's reluctant to use a wheelchair. He doesn't want to ask for special considerations at the parks, but it will be too difficult for him without help. I'm hoping that they can offer that for him.
He's not listed yet because he has some other health issues that have to be addressed before the team will accept him, but we're optimistic.
I only have lab-type papers from his dialysis center, but you can't help but notice the access site on his arm. It generally generates lots of stares. What kind of assistance were you guys offered at the parks?
Thanks so much for answering (we leave in a few hours).

I'm sure Christine can answer you better. My son was in kidney failure for our make a wish trip so we had a GAC that gave us front of the line access to rides and characters. The next time we went we didn't get one but he rode in one of the strollers a great deal of the time (generating a few stares but not too bad!). The next time we went we were five months post transplant and we didn't get one then either. We probably should have but we just spent short days in the parks. He was still easily exhausted at that point.

I was thinking you could just show them his access site but didn't want to sound strange. You could do this if there was any question (but I really don't think there will be). Encourage him to get the wheelchair and pay no attention to other people! I would say get the wheelchair and only use it when he gets tired but that seems to generate comments even on good old Intercot. I guess you need to have a thick skin and just go and have a GREAT time! Maybe this thread will help some people see that there are certain medical conditions where you might use a wheelchair on and off.

I hope he is post transplant the next time you go

[KatGat]

Thanks so much!! It really can look misleading. He's only 44 and a big guy (former football player). He doesn't look sickly in general (except his eyes, he looks a little pale, the access site, & he moves slowly). I think he feels obligated to help me with our 2yr old-who has his own issues. We'll also have our 14 yr old with us, who ends up taking on more responsibilities than your average teen does on vacation.
And I don't think it's stange at all to show them the access site. His is on top of his large forearm and is quite...mmm...'striking'... even as access site go... but people usually don't realize what it is (I sure didn't before it affected my family.)

What a God-send you guys are. I've never communicated with others in the same boat. Thanks!

[merlinmagic4]

It must be so tough on him. My son is only 10 but is so sensitive to people knowing about his transplant.

I would get the pass and see if he can skip the wheelchair for the first day. If you can access lines from the fastpass/exit it will cut your days way down. So, you do all you want in a shorter time and have more time to rest. If the first day is really hard then you know to push for the wheelchair. I can't imagine how hard that is for a young guy to feel dependent like that. I really empathize with him.

I hope you have a WONDERFUL trip

[ElenitaB]

So that he can feel more proactive and less dependent, would he feel more comfortable in an ECV. Would his access site permit him to drive comfortably? I had a PICC line for quite a long time but it was in my upper arm. It was quite bulky which is why I ask about him being able to drive.

I tried to commando it at the beginning of two of our trips (Nov 06 and Oct 07) and ended up causing myself harm that required medical intervention when we returned home. Even though I felt okay those first days, it wasn't worth it in the long run.

[KatGat]

If I could convince him, it would have to be an EVC. I may have a tough time trying to push him as big as his is (and as small as I am) and push the stroller, too. He think feels like he's contributing more when he can push the stroller. He does have issues with hand strength, and use of the access arm. It's a challenge to schedule stuff around his dialysis schedule while there. Thanks again.

[BelleLovesTheBeast]

Last January my sister was a dialysis patient when we took our family trip. She was having a lot of problems so we rented a wheelchair for her. It made it a lot easier on her since walking the parks can be tiring for someone who is healthy. We didn't know about the GAC...no one told us so we didn't have one. We didn't have any problems with using the alternate enterances and CMs were helpful without it. I hope you have fun.

[Hammer]

Sorry for the delay in posting. Mom did not have a GAC, but Mom has never been much of a ride person. Her favorite thing is touring World Showcase, so I can't really help you there!

[Marilyn Michetti]

Hey, I know this is a little, but I just read about a cruise line that caters to dialysis patients. They get their diet requirements, and their treatment in a room overlooking the ocean. Well, you know what I mean. The diet part is in the dining room.

Wouldn't it be great if Disney Cruise Line would offer something like that for renal and chemo patients?

[thrillme]

Have you considered just calling the doctor and having the office fax a note to the guest services at your hotel?

You might skip the wheelchair and opt for one of those scooters. It'll give him more control and freedom.

[LibertyTreeGal]

You probably aren't back yet, but I am anxious to know how the trip went.

[IloveDisney71]

My DH was on dialysis for 5 years before he finally got his transplant. I had been taking my DD's to Disney for years without him because he didn't want to deal with dialysis on vacation. Anyway, after his transplant he decided that he and I should go to Disney (for the "honey moon" we never really had). It was 6 months after his transplant when we went and he was still very weak and tired easily. For 2 days he refused to get a wheel chair. He had to rest a lot on benches to gather his strength. He's a tough guy (former Marine) so I guess it was a "pride" thing. Anyway, on the 3rd day he finally admitted that he needed a wheelchair. However, he's a big guy so I could hardly push him. We quickly traded it for a ECV and he had a MUCH BETTER time!!!! He wasn't as tired and was able to enjoy himself more.
There is NO shame in using a wheel chair or ECV and Disney is probably the most accomodating vacation destination for people with health issues.

[KatGat]

Hey, I know this is a little, but I just read about a cruise line that caters to dialysis patients.
Marilyn, which cruise line is that? That would be great. We are also trying to figure out the logistics of doing the Disney Cruise within the next year or so.

[KatGat]

Hi all! We just returned last night. The trip was fine. We went to Guest Services at MK our first day to ask about the GAC. I had read several times to stress what your limitations are as opposed to your ailment, but the way the CM worded the question, I'm not surprised people don't give the information the CM is looking for at first. Why don't they just ASK what the limitation is? Seems we were asked what the 'issue' was or something equally as vague. After going around in circles for a minute, I stopped and just said that he's weak and tires easily after standing for a while. He wrote up a card for my husband, all the while mumbling that he thinks a wheelchair would be better. We felt a little chastised but refused to feel guilty. The card was just what he needed. I wish we had gotten one last year. Thanks so much!!!

[BelleLovesTheBeast]

I'm glad they gave you one without too much of a problem. That is good to know. I could understand them suggesting a wheelchair but I don't see why they needed to make you feel bad about not getting one. It's not like Disney lends them to you for free.

[Marilyn Michetti]

Hey, I know this is a little, but I just read about a cruise line that caters to dialysis patients.
Marilyn, which cruise line is that? That would be great. We are also trying to figure out the logistics of doing the Disney Cruise within the next year or so.

Most of the major cruise lines offer dialysis and chemo for guest's. Just go to "google", and ask for cruise lines offering dialysis.

[merlinmagic4]

I think the last NKF's Family Focus newpaper had an article on dialysis and cruises. Maybe you can access it on their website if you don't get it.