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Peritoneal dialysis questions


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I am looking for more recent info as many of the posts on peritoneal dialysis (PD) are a bit old. We are very experienced cruisers but DH is just beginning PD and will be using a cycler so that is all new to us. We usually cruise on Celebrity and for our future cruises will drive to the cruise port directly from home (without a hotel stay) and we will book a suite on the ship. I would appreciate any advice regarding the following:

 

1) Does Baxter now charge for deliveries to the ship (US ports)? Do they only deliver the solution? Can they deliver the cassettes, masks, antiseptics etc or must we pack those?

 

2) For a week's cruise using the cycler, how much additional solution do you take "just in case" manual PD is needed? Do you bring a week's supply of both? If manual PD is then needed, how do you hang the bag?

 

3) Has anyone on PD had problems where you needed to obtain additional PD supplies in a Caribbean port? Have you had problems related to PD (i.e. peritonitis or catheter site infection) where you had to go to a dialysis center in port or can the ship doctor handle this? I realize PD patients usually bring along some emergency antibiotics.

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My wife and I are experienced cruisers but this past yeat I needed to go on dialysis. I selected PD so we could continue our cruising lifestyle. We were able to take one 7 day cruise this past January while on PD. However I did not bring my cycler and opted to do manual exchanges for the week. let me answere your concerns in order:

1 - Baxter charges $300+ to deliver the supplies to your cabin and they require 60 days advanced notice. They will only deliver to a US port. They deliver only what they normally deliver to your home, dialysate, cartridges. mini-caps, etc. you have to provide gauze sponges, antiseptics, disinfectants, gloves, etc. The cruise line also requires advanced notice and will require some paper work. They also recommend that you do not cruise until you have at least one year of stable dialysis experience.

2 - I obtained a portable folding IV pole for my CAPD during the cruise. if you are going to use the cycler I probably would also order a case of CAPD dialysate, "just in case." Also for the cycler Baxter can also supply drain bags to capture the used dialysate rather than piping it into the shower, say. Also bring a roll of masking tape and a heavy duty extension cord. The cycler modem will not communicate on board the ship.

3 - You will not be able to obtain PD supplies in any Caribbean port, except for perhaps the US Virgin Islands and Puerto Rico, but I have not verified this. The ship's medical center is to be considered an "Urgent Care" facility. Their treatment protocols are such that if you have an issue requiring specialty care (i.e. Nephrology) they will debark you at the next port and send you home. So be prepared, we bring a virtual pharmacy with us.

 

Ater almost a year of home treatment, my peritoneum said, "enough of this nonsense" so I had to have an emergent Central Venous Catheter placed and I am now on Hemodialysis. The saving grace for us now is that Celebrity provides dialysis cruises through Dialysis-At-Sea (http://www.dialysisatsea.com). They bring all the equipment on board plus the required nurses, techs and a Nephrologist. If you are concerned, and especially for a longer cruise, I would independently book passage on a dialysis cruise (they only accept 16 hemo patients per cruise) but there would be a Nephrologist and trained staff in case of an emergency. I doubt they would turn you away.

 

Let me know if I can be of any further help.

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Thank you so much for your detailed response. That info is very helpful. I am sorry PD did not work out for you. Any type of dialysis is truly life changing. When you say the cycler modem will not communicate on board, do you mean that the prompts cannot be displayed on the machine or that if there is a problem Baxter cannot troubleshoot? Were the supplies waiting in your room or when/how did you track them down?

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The prompts will always display since they are a part of the cycler software. With no modem connection Baxter cannot contact your device and your results will not be transmitted to your dialysis center. However, the results are stored in the cycler and when you re-establish contact everything will be uploaded to the PD nurse. I only needed two exchanges so I was able to fit the CAPD into our daily schedule, e.g. I did the first fill before breakfast. When we arrived in our cabin the supplies were neatly stacked in a convenient corner.

 

On second thought, the cycler modem is really just a cell phone and today's ships all have on-board cellular coverage. Check with the cruise line to see if the shipborne network will accept a data stream. If you are docked at an US port (Puerto Rico or USVI) cell coverage is OK. Another thought, the cruise lines are very accomodating of dietary requirements, be sure to contact them with your personal requests, such as low sodium, etc.

 

Good luck and happy sailing!

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  • 2 weeks later...

My dad did PD for years until he heard to go on hemo. Our first cruise being on PD we followed the procedures given to us by the cruise line and Baxter. His supplies weren't delivered to the room and no where to be found. We got off the ship and caught back up with her about 3 days later in Colon. Please if possible take the solutions on the ship with you. When you get to the port request help in getting the boxes to your room. He did his dialysis manually.

 

He did hemo twice in Grand Cayman, very nice and clean facility, once in Key West, once in San Juan, and once in Cozumel.

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