Disney on dialysis

[ThePetLady7]

Our last trip was this past July, dr. visit after our return home led to the discovery of why I felt so bad while we were there...kidney failure! Long story short, I found out I have polycystic kidney disease (yes, it is genetic, but no known family history). It has been a wild couple of weeks, with an 8 day hospital stay, placement of permacath, fistula surgery, and start of in center hemodialysis.

We had already planned a return trip at Christmas before all this happened. APs were bought, points rented from a DVC member, not to mention hopes up. We hope to follow thru on our plans, and I have started the ball rolling with my center's SW to schedule treatments while we are there. However, she did mention that I might be required to repeat various tests by the center there before they would let me dialize. Has anyone had this experience? It's bad enough to have to schedule around without adding extra time to it, or additional expense.

So, I guess I'm looking for other's experiences. Did your treatments go smoothly? Did it dramatically alter your enjoyment of your trip? Also, did you make special requests at restaurants? We have been to WDW many times, so having a laid back approach to this visit is ok with me...no commando here. And, my kids are teens so if they want to hit the parks without me, it's no big deal.

I would appreciate any experiences anyone can share.

 

[dclfun]

My son, who is now 25, has been on hemodialysis for the past 5 years. When we're at Disney he uses the DaVita center in Celebration, FL. One thing to note, it's VERY hard to find and also you will be scheduled around those who go there regularly. He's never had a problem getting times though and I doubt you'll have any challenges there. You can leave it up to your home center to set things up and they'll tell you if you need further tests- David never has. My son is switching to peritoneal dialysis in the very near future and I'm hoping he'll feel better and have some more freedom. Good luck to you and I'm certainly glad you found out that you were in kidney failure, even though it's not a fun thing to have!---Kathy

 

[natfrac]

My husband is on dialysis and also goes to Davita in Celebration. He's always had a positive experience, and he takes a cab so he doesn't have to worry about finding the place. They did not require him to have any special tests, but I believe the center at home sent his latest test results.

My husband does not make special requests as restaurants, he tries to make good choices when ordering. He might make small requests, such as no salt on the steak, but that's about it.

It does not dramatically alter the enjoyment of the trip. I go about my business in the morning, sometimes hitting rides that he doesn't like and then he'll meet up with me when he is done.

 

[dclfun]

Just an FYI- my son tried to use a cab one time but the driver NEVER found the place!--Kathy

 

[Brandi1leigh]

This thread is really interesting to me too. I found out I was in kidney failure due to Policystic Kidney disease while I was at Disney in 2008. I have been on incenter hemo for a year and a half. I am now planning a trip for Oct 2012 and find the whole prospect of traveling a little scary. Glad to know others have managed.

 

[Brandi1leigh]

Sorry to post twice, but I just thought of something else.

I'm really interested in how people followed the renal diet while at Disney. Any tips, tricks, etc. Thanks!

 

[dclfun]

Sorry to post twice, but I just thought of something else.

I'm really interested in how people followed the renal diet while at Disney. Any tips, tricks, etc. Thanks!

As you know, there are alot of restrictions with the renal diet. For TS restaurants we had noted those restrictions in advance and then spoke with the chef upon arrival. We had some great meals and some HORRIBLE ones. The best was due to chef TJ, who was working at O'hana. He made steamed huge shrimp for my son, a special salad, and then got a filet from Kona and prepared it for him with real unsalted butter. It was the best meal my son had in ages. Then there was Boma...where we could not have received poorer service. My son received a plate of noodles with butter on the side ( cold so the butter wouldn't melt) and a few pieces of gristled meat. There were NO desserts that he could have and no one tried to accommodate him either. It was the worst $25 ever spent. No one else in our party enjoyed their meal watching David have so few choices, and disgusting choices at that. We were told by special diets to request a meal in advance at a CS location that would be prepared esp. for him, but we never used this option as we aren't great planners and would have needed to arrive at that location at a specified time to pick up his meal. Instead we just worked with the chef in any CS locations when we arrived and they were able to prepare something w/o salt, and then we avoided high phosphorus or items with calcium. HTH!---Kathy

 

[Brandi1leigh]

As you know, there are alot of restrictions with the renal diet. For TS restaurants we had noted those restrictions in advance and then spoke with the chef upon arrival. We had some great meals and some HORRIBLE ones. The best was due to chef TJ, who was working at O'hana. He made steamed huge shrimp for my son, a special salad, and then got a filet from Kona and prepared it for him with real unsalted butter. It was the best meal my son had in ages. Then there was Boma...where we could not have received poorer service. My son received a plate of noodles with butter on the side ( cold so the butter wouldn't melt) and a few pieces of gristled meat. There were NO desserts that he could have and no one tried to accommodate him either. It was the worst $25 ever spent. No one else in our party enjoyed their meal watching David have so few choices, and disgusting choices at that. We were told by special diets to request a meal in advance at a CS location that would be prepared esp. for him, but we never used this option as we aren't great planners and would have needed to arrive at that location at a specified time to pick up his meal. Instead we just worked with the chef in any CS locations when we arrived and they were able to prepare something w/o salt, and then we avoided high phosphorus or items with calcium. HTH!---Kathy

Thanks for the info! I have been debating about whether to bother with notifying the chef. I am pretty lucky in that my potassium isn't a problem (knocking on wood) and I haven't had to overly limit my salt yet. Dairy/phosphorous; however, is the bane of my existence. As of right now we aren't planning to many TS meals, although since the trip is so far away, we may add some before we go, and I'm pretty sure we'll end with one or two. But the majority of our meals are going to be counter service. Nice to know there are some options out there without having to plan the entire vacation around CS restaurants.

 

[dclfun]

Thanks for the info! I have been debating about whether to bother with notifying the chef. I am pretty lucky in that my potassium isn't a problem (knocking on wood) and I haven't had to overly limit my salt yet. Dairy/phosphorous; however, is the bane of my existence. As of right now we aren't planning to many TS meals, although since the trip is so far away, we may add some before we go, and I'm pretty sure we'll end with one or two. But the majority of our meals are going to be counter service. Nice to know there are some options out there without having to plan the entire vacation around CS restaurants.

Are you taking phosphorus binders, such as Fosrenol? If so, that will help alot and allow you to eat more phosphorus than w/o the meds. I know it's helped my son immensely. The renal diet is not fun!

 

[ThePetLady7]

Thanks for the info! I have been debating about whether to bother with notifying the chef. I am pretty lucky in that my potassium isn't a problem (knocking on wood) and I haven't had to overly limit my salt yet. Dairy/phosphorous; however, is the bane of my existence. As of right now we aren't planning to many TS meals, although since the trip is so far away, we may add some before we go, and I'm pretty sure we'll end with one or two. But the majority of our meals are going to be counter service. Nice to know there are some options out there without having to plan the entire vacation around CS restaurants.

I am with you on the phosphorus. My other levels are good, except I need to take in more protein. The nutritionist at my center has really emphasized the "everything in moderation" approach. I'm expecting to be able to make somewhat good choices at the TS restaurants, but the CS locations worry me a bit more since they don't have the flexibility of a full kitchen.

Thanks to all for the info!

 

[Brandi1leigh]

Are you taking phosphorus binders, such as Fosrenol? If so, that will help alot and allow you to eat more phosphorus than w/o the meds. I know it's helped my son immensely. The renal diet is not fun!

I take renvella, 4 to 6 per meal. I do a pretty good job avoiding dairy and dark sodas (I miss my cokes!!!!!), but phosphorus is used in so many prepackaged foods that I have a problem with those. And my lifestyle sees me eating out a lot, so I get phosphorus there as well. I 100% agree that the renal diet is not fun. That's why I was slightly concerned about options at Disney. Of course the bigger concern is my willpower to follow the diet while on vacation. LOL

 

[Brandi1leigh]

Our last trip was this past July, dr. visit after our return home led to the discovery of why I felt so bad while we were there...kidney failure! Long story short, I found out I have polycystic kidney disease (yes, it is genetic, but no known family history). It has been a wild couple of weeks, with an 8 day hospital stay, placement of permacath, fistula surgery, and start of in center hemodialysis.

I would appreciate any experiences anyone can share.

just thought I would mention I also have pkd with no history of it in the family. So if you ever need to vent feel free to send me a message!

 

[ThePetLady7]

just thought I would mention I also have pkd with no history of it in the family. So if you ever need to vent feel free to send me a message!

Thanks! I try to stay as upbeat as possible most of the time, but there are times when you just can't plant that smile on your face anymore. It would be nice to be able to talk to someone that is a little further down the road.

 

[Brandi1leigh]

Thanks! I try to stay as upbeat as possible most of the time, but there are times when you just can't plant that smile on your face anymore. It would be nice to be able to talk to someone that is a little further down the road.

I also try to stay as positive as possible! Especially around family friends! I'm 35 and everyone at my center is over 60, so the social worker and dietitian don't have much experience with my needs, so I like to think that those of us online should be able to support one another. I certainly don't claim to know all the answers, but multiple heads have to be better than one.

 

[txnana]

and so I am very interested in keeping her healthy for our trip. Thanks so much for all your help and suggestions, will keep this thread in my "be sure to check" file!!

 

[ThePetLady7]

I also try to stay as positive as possible! Especially around family friends! I'm 35 and everyone at my center is over 60, so the social worker and dietitian don't have much experience with my needs, so I like to think that those of us online should be able to support one another. I certainly don't claim to know all the answers, but multiple heads have to be better than one.

I'm 43, and the youngest at my center too. So far, the staff seems to be pretty tuned in to the differences in my needs compared to the majority of their patients...particularly with my desire to carry on my life as usual in spite of dialysis. Still, it would be nice to have someone that is in a similar phase of life. Instead, I learned while waiting one morning that my son played football with another patient's grandson! Lol

 

[natfrac]

My husband is in his 50s, so he didn't relate to most people at the dialysis center who are considerably older. I finally convinced him to check out another center and it's much more lively. It's made the dialysis experience much better for him.

As far as dining at Disney, he orders protein-heavy meals, asks for no added salt, and he's fine. He know which foods to avoid for phosphorus. He didn't like making special requests ahead of time, because he wanted to order like everyone else. And so far it's worked for him.

 

[Brandi1leigh]

I'm 43, and the youngest at my center too. So far, the staff seems to be pretty tuned in to the differences in my needs compared to the majority of their patients...particularly with my desire to carry on my life as usual in spite of dialysis. Still, it would be nice to have someone that is in a similar phase of life. Instead, I learned while waiting one morning that my son played football with another patient's grandson! Lol

Well, I'm not in exactly the same place since I'm single, no kids; however, I did teach in a public high school before I got sick for 12 years, so I know teenagers. LOL I'm also a very happy "aunt" to kids ages 1 through 18 (including TxNana's two adorable grandsons to whom I'm an honorary aunt!)

My husband is in his 50s, so he didn't relate to most people at the dialysis center who are considerably older. I finally convinced him to check out another center and it's much more lively. It's made the dialysis experience much better for him.

As far as dining at Disney, he orders protein-heavy meals, asks for no added salt, and he's fine. He know which foods to avoid for phosphorus. He didn't like making special requests ahead of time, because he wanted to order like everyone else. And so far it's worked for him.

I like my center's care and the staff. I visited a couple of other centers in the area and none of them were a good fit for me, so I can deal with age difference!

I'm glad to find your husband was able to find plenty of options without notifying the chefs. I've been on the fence because I don't like special treatment and I think not notifying the chefs gives you more flexibility, but I also didn't want to get there and discover there wasn't anything on the menus to order. I still plan to peruse the menus on various sites before we go, but since the trip is so far away I haven't done it yet.

So glad this thread got started! and that TxNana pointed it out to me!

 

[ThePetLady7]

I like my center's care and the staff. I visited a couple of other centers in the area and none of them were a good fit for me, so I can deal with age difference!

I'm glad to find your husband was able to find plenty of options without notifying the chefs. I've been on the fence because I don't like special treatment and I think not notifying the chefs gives you more flexibility, but I also didn't want to get there and discover there wasn't anything on the menus to order. I still plan to peruse the menus on various sites before we go, but since the trip is so far away I haven't done it yet.

So glad this thread got started! and that TxNana pointed it out to me!

I'm so glad there are enough of us to keep this thread alive!

I've only been at my center for 3 weeks, and have no experience personally with any others. I have read a bit of what other's have gone through though, enough to realize I am in a good place. While I don't have "patient peers" exactly, the staff is relatable and that is who I really have to talk to. I also feel that I am getting the best care possible, with my long term interests at heart. So I will look for peers elsewhere. What better place to look than those who also share a love of Disney?

Love hearing about the dining experiences. I'm also not inclined to want to make a fuss over meals. I think if I can keep the salt down, and switch out some side dishes, I should be ok.

 

[JenniBugInPink]

Hi everybody. I'm not on dialysis yet, and hope it will be a long time before I get there (doesn't everyone?). I was diagnosed with Stage III renal failure about a month ago, but I've been at stage III for at least 3 years (per labs) and didn't realize it. I'm an RN, and I should have known it even if the doctor didn't put everything together, but just didn't add everything up.

Mine is due to my Sjogren's, which makes it more unusual, and almost impossible to find information about. I have no idea how quickly I'll get worse, what the usual course of the disease is, etc. I have an appointment with my rheumatologist tomorrow, so I'm hoping to find out more then. He's the one who diagnosed the kidney disease. Usually in Sjogren's it's due to Interstitial Nephritis, but I don't know for sure if that's what it is in my case yet.

Anyway, I just wanted to say that I was glad to read this thread, since I know my day will come when I'm gonna' care about this information, and it was reassuring to read that other people are visiting WDW and doing dialysis at the same time. Since we have (a very small) DVC membership that lets us come down every other year, or every three if we want to stay longer, I'd like to think we could continue even when I get worse, ya' know? So thanks , and I hope you guys and your family members continue to do really well.