Portable dialysis machine and DCL

[ChrizJen]

I posted a while back about a family member who is on dialysis and wants to go on a cruise with us. We thought that because they don't have the equipment available on board, she wouldn't get to go. But she has since found out that she is eligible for a "portable" dialysis machine that she can do at home and take with her when she goes on vacation!!!

So here's my question: the machine is the size of a large desktop fax machine. Anyone here know if it's possible to arrange to have it put in her stateroom prior to boarding? She'll likely need it the day before the cruise, so shipping won't be an option. But she's also blind, so carting the thing around port and on the ship won't be possible either. Is there a way to arrange a slightly earlier arrival time to the port to have the machine taken on board for her and placed in her room?

Thanks!

 

[Cheshire Figment]

I would strongly suggest contacting DCL directly.

 

[ChrizJen]

Oh definitely! We'll check with Disney when we go to book.
I was just curious if anyone had any experience with anything like this.

 

[mdvlprof]

I would strongly suggest contacting DCL directly.

My thought, too. You need to talk with the Special Needs folks, not the regular CM.
I would think arrangements can be made. I'm sure you're not the first with that question.

 

[Mary976]

Before calling DCL, you'll need to know if this is home hemodialysis or home peritoneal dialysis. Some cruise lines do not allow anyone who needs hemodialysis, even if they are set up for "at home" use.

Mary

 

[darkpixie08]

Please report back in, and let us know what you find out! My father is on peritoneal dialysis, and we'll probably end up doing something very similar. I'd love to hear all about your experience, as I'm sure it would put his and my mother's mind at ease (they're really nervous about traveling).

 

[chloelovesdisney]

The at home machine I have experience with was not easy to operate, make sure someone is expert at it before going on a ship. Since she is blind I'm guessing it won't be her. I would not want to be responsible for running it with no possibilty of back up help.

 

[dclfun]

My son is on PD now and he can cruise with Disney vs. when he was on hemo. His machine is about the size of a small fax machine and of course there are bags and bags of dialysate, an IV pole, etc. You definitely need to know if it's hemo or PD she's using and of course to contact her clinic and social worker to have the disposable supplies shipped. One of the porters should be able to assist with medical equipment. They have always handled my extra vent and battery chargers with care and take them by hand vs. shuttling them through with the other baggage. That said, you DO need to call DCL directly and ask to speak with someone in special services. They will let you know what's required and what's possible, and will offer any assistance available. Good luck to her!

 

[DvcDoc]

Doing PD should let you cruise without much of a problem. The biggest thing is getting your Dialysate delivered to the right place. When you talk to Special Services, ask them where your supplies should be delivered. Your family member will have to take all of their consumables with them, but the heavy lifting should be taken care of by the supplier.
Again, this is if you are doing CCPD or CAPD, I can't address how Hemo would work.
Good luck!

 

[DvcDoc]

Deleted duplicate post - oops

 

[dclfun]

Doing PD should let you cruise without much of a problem. The biggest thing is getting your Dialysate delivered to the right place. When you talk to Special Services, ask them where your supplies should be delivered. Your family member will have to take all of their consumables with them, but the heavy lifting should be taken care of by the supplier.
Again, this is if you are doing CCPD or CAPD, I can't address how Hemo would work.
Good luck!

I don't think DCL allows hemo- only those using PD, but it's always best to check with the source, esp. if someone independently does hemo at home vs. needing assistance. DCL does not provide any assistance with dialysis and the Guest using it must be independent with it.

 

[ChrizJen]

We will definitely check with DCL.

I guess I need to find out more about her dialysis. I know at first she was on full hemodialysis (where she had to go in like every other day for 4 hours on a machine).

Then she was able to do at home with a port that she would hook big bags of fluid to. She was able to take those supplies with her and do her dialysis wherever she went. (I'm guessing that was PD?)

But then she got really sick, and had to go back to the full hemo. She's still on the full HD, but just got approved and has an appointment for a small machine that will allow her to do the HD at home (don't know what that's called).

I know there is very extensive training that she has to do before she can get the machine. And since my cousin is blind, my aunt (her mom) is going to do the training with her because she'll be the one who administers it. So obviously my aunt would also be going on the cruise with us if this all works out. And the cruise we're looking at isn't until June of 2013, so they'll be pros at it by then, so they won't need any assistance.

I will find out a little more about the techincal names for the machines and procedures, and then call DCL and speak with someone who handles special needs. I will definitely report back what I learn!

Thanks for the tips and input!

 

[DvcDoc]

From what you are describing, she is currently doing what we call in-center hemo. That would be the 3 times a week for about 4 hours. It sounds like she is getting ready to switch over to home hemo with either the Fensius or NexStage system. (IMHO, this will be much better for her as she can do her dialysis more often at a slower rate - but that is a whole 'nother discussion ) The period she was doing the bags of fluid through the port in her abdomen would have been PD, and if she got peritonitis a couple of times they would have switched her over to hemo again.

And the DCL Special Services folks should be able to help you out.

 

[belkisima]

I am going on the Fantasy on May 5th and I am on Peritoneal Dialysis. I have a machine at home but I've chosen to do manual exchanges on the cruise because I didn't want to be strapped to a machine for 9 hours at night and miss out on activities. So instead, I will do 4 exchanges a day that take about 20 min a piece and them I'm good to go.

I was going to have my dialysis supplies shipped by the supplier but they wanted to charge me $300 minumum to deliver them to the port so I am going to take them myself. The bags for manuals are smaller but I will still need to take about 28 of them (7 day cruise) but I'm prepared.

The machine weighs a lot and the dialysis solution for the machine would require about 10 large cases so this will be easier for me. So yes, it is totally doable to travel on peritoneal dialysis with no problem!! In fact, it's encouraged to live as normal life as possible.

 

[DvcDoc]

Going from CCPD to CAPD is one of the advantages of doing PD, but I'm curious about what effect that is going to have on your Kt/V. I'm finally at 2.3 on mine but am doing a full 9 hour cycle and an additional manual during the day. I don't want to do anything to disturb the level but would love to not have all those hours on dialysis when we go to WDW in August. I'm curious about what your PD team has told you the impact might be.