Disney on dialysis

[Brandi1leigh]

Well, we've booked a trip for Sept/Oct. Haven't talked to my social worker yet to set up hemo, but that's on the agenda for next week.

I'm very excited but also very scared. This will be my firsttrip traveling while on dialysis!

 

[kwdietrich1]

I am very grateful to have found this thread. I found out last month that 10 years after my kidney transplant, I am in renal failure again. I am not at the stage for dialysis yet, but I went from diagnosis to peritoneal dialysis in less than 2 years (Rapid-IgA Nephropathy diagnosis). It seems my Creatinine, BUN & Albumin levels are creeping up even faster than last time. This is a concern for me as we have a trip booked in July, and it worries me that my health could be much worse by then. I did not suffer silently. Dialysis was difficult and in the end, before my transplant, my doctors did not feel the dialysis was doing its job.

I basically put my life on hold when I was on peritoneal dialysis. There is a pretty good chance I won't be able to do PDD again due to a large amount of scar tissue.

I am encouraged to hear that some of you have made successful trips to Disney while on dialysis, because I will NOT put my life on hold this time!

By the way, if anyone has any questions about the transplant procedure and aftercare please ask away! It was largely a successful and non-traumatizing experience.

 

[akhenaten]

Well, we've booked a trip for Sept/Oct. Haven't talked to my social worker yet to set up hemo, but that's on the agenda for next week.

I'm very excited but also very scared. This will be my firsttrip traveling while on dialysis!

Yay and (((hug))) I know how nervous I would be about my first trip!

 

[akhenaten]

I am very grateful to have found this thread. I found out last month that 10 years after my kidney transplant, I am in renal failure again. I am not at the stage for dialysis yet, but I went from diagnosis to peritoneal dialysis in less than 2 years (Rapid-IgA Nephropathy diagnosis). It seems my Creatinine, BUN & Albumin levels are creeping up even faster than last time. This is a concern for me as we have a trip booked in July, and it worries me that my health could be much worse by then. I did not suffer silently. Dialysis was difficult and in the end, before my transplant, my doctors did not feel the dialysis was doing its job.

I basically put my life on hold when I was on peritoneal dialysis. There is a pretty good chance I won't be able to do PDD again due to a large amount of scar tissue.

I am encouraged to hear that some of you have made successful trips to Disney while on dialysis, because I will NOT put my life on hold this time!

By the way, if anyone has any questions about the transplant procedure and aftercare please ask away! It was largely a successful and non-traumatizing experience.

Oh Kelly.. I am sorry to hear that! I am 1 year post transplant and it is always somewhere in my thoughts about what it will be like when that time comes... keep a positive attitude and I hope your numbers hold out so you can be strong and enjoy this trip!!

 

[DvcDoc]

Hope you have a great trip Kelly. We're looking at coming down in August to take daughter down for the college intern program. We're sending her off and then spending a week with just us. I think it's going to be a blast. If everything works out ok, I will have my transplant by then, so hoping to be back at 100% for the trip. If the transplant falls apart, I'll be doing PD while I'm there - but here's hoping it all stays together.

 

[Brandi1leigh]

Curious about anyone who's used Celebration Dialysis. My social worker says she can't reserve a spot for me till June or July. It's really important to me that I get an early morning spot because we've made tons of dinner reservations. Just wondering if I should be concerned about getting the time I want.

 

[natfrac]

My husband has used Celebration dialysis and he likes it fine, as well as anyone can like dialysis.

 

[dclfun]

Curious about anyone who's used Celebration Dialysis. My social worker says she can't reserve a spot for me till June or July. It's really important to me that I get an early morning spot because we've made tons of dinner reservations. Just wondering if I should be concerned about getting the time I want.

My son used this facility three times and never had a problem getting an early slot. I'm pretty sure that many of the patients here are guests of one of the local theme parks so the appointments are more flexible. Ask your social worker to stress the need for an early time slot if she/he can call ahead for you.

 

[Brandi1leigh]

Thanks! I'm nervous as this is my first time traveling on D. Plus we got free dining, so we've had to make reservations. The friend I'm traveling with is so great, I don't want her to miss out on a restaurant because our reservation clashes with dialysis. I'm probably just being a worrywart because its all new on dialysis.

 

[txnana]

I will not be concerned!! Just means more stops at the food and wine festival to fill up the hollow spots!! EEK! I can't wait for 2 weeks at AoA and food and wine!! Do check her blog, it is a fun read!

 

[Brandi1leigh]

I will not be concerned!! Just means more stops at the food and wine festival to fill up the hollow spots!! EEK! I can't wait for 2 weeks at AoA and food and wine!! Do check her blog, it is a fun read!

Darn it! I forgot you were subscribed to this thread! Don't worry. Most people seem to agree that I can get the time I want, so our reservations should be safe.

 

[Brandi1leigh]

Almost had a heart attack today. My social worker called Celebration Dialysis to set me up and was told they didn't accept my insurance. I then called my insurance company to find out where the nearest dialysis center was that was in their network. The woman I talked to was completely unhelpful. She kept giving me Miami locations, which I kept explaining was nowhere near where I needed to be. Near tears, I finally called my social worker and asked if she would call Celebration to find out where the nearest dialysis centers were. After about 10 minutes she came back and told me that she had accidentally given them the wrong insurance info. They DO take my insurance. No problem. Whew. What a relief. Now my fingers are crossed that I get the time I need so that our ADR's aren't messed up!