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Joanniebop

Peritoneal Dialysis and Cruising

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Next week, we will be taking our first cruise with DH on PD.

 

A few questions ...

 

I tried to order an IV pole that attaches to the wheelchair, but it looks like I won't get it before the cruise. I also ordered a regular IV pole which I do have , and have practiced doing manuals at home.

 

Should I try an pack the IV pole, which I think I can break the pole down in 2 pieces and the legs are detachable, or should I just try and use over the door hooks? Seems like the doors in the cabin are pretty thick.

 

Any other advice in this matter would be greatly appreciated.

 

We use the night time cycler so this will be a first.

 

I plan on taking > gloves, masks, anything necessary for changing his cath site, plenty of caps, my own trash bags to dispose of empty bags and tubing, organizer, lysol wipes for area used.

 

What am I forgetting?

 

I ordered the solutions and 1 box of caps from Fresenius and they are to deliver directly to our cabin.

I will call the day before departure to make sure that everything is in order for delivery.

 

I am a little nervous about our first time on manuals.

 

Thanks

Joannie

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My wife is on Paritoneal dyalysis and we have cruised about 7 times on various ships.

 

I do not know what a recycular is as my wife just does it manually.

 

We started out having Baxter deliver the bags to the ship but had one experience in which the personel on the ship misplaced the seven cases of bags and we had to leave the ship because they had no idea where they were. They tried to indicate that they hadn't been delivered but as it truned out someone had just misplaced them. A cruise line that we use to use all the time seemed to have a very laxadazical attiture about dyalysis. Because of the difficulty to fly we only cruise out of Seattle as we live only 60 miles south of there.

 

We now cruise with NCL and they are very good at handling special needs. They really take a interest in our needs and we have had no trouble at all.

 

I will give you an idea of what we do which may not meed your needs but it will give you some idea of how it works for us.

 

First of all we cruise in a suite so we have a concierge to handle some of our needs and concerns.

 

We take the cases of bags with us rather than having them delivered. We inform the special needs dept. that we will be aboard the ship and that my wife is on dyalysis and that we will be bringing the cases with us and will check them through with our luggage. I mark each case with ships name, sail date, room # and my wifes name on all four sides. We have sailed on NCL twice now and the cases were in our stateroom in less than a half hour from the time of our arrival.

 

My wife has a carry on bag that she puts all of the supplies for dyalysis in and we carry this bag on. We also have a IV pole that folds down into a small package. It is small and has to be put on a table or desk but works fine for us. I bought this off the internet but I am sure that a medical supply house would carry them.

 

My wife does four exchanges a day at certain times. We inform the room stewards and anyone else that needs to know that we have to maintain a clean room and not to enter if the do not disturb sign is out.

 

This is about all I can think of at this time but if you have any questions please feel free to ask.

 

Another good source of information is Baxter if you use their products or maybe your Dr. My wifes Dr. gave us some good hints before the first time.

 

Be absolutely sure that you inform the necessary dept. of your cruise line that you will be on board.

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Cruzbums..thanks for your reply.

I did see the IV pole that sits on a table but I wasn't certain that it would be steady enough for the bag, so I am sorry that I didn't order that one, but maybe for our next cruise. Providing that all goes well on this one.

 

The ships special needs dept. does know of our situation.

 

I will let the steward know about the necessity for cleanliness and privacy while doing the exchanges.

 

We just returned from our Dr.'s and she wants us to practice at home just so we can ward off any possible problem such as retaining fluid etc.

 

My DH is on a machine ( cycler) that works at night time while he sleeps, but they will not allow the machines on cruise ships therefore the need to do the manuals, as your wife does all the time. A few more days at home doing manuals and I think that we will be OK.

 

Thanks for all your help and wishing you many more cruises.

 

Joannie

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My parents escorted a group of about 40 people several years ago on the Legend 12/05. My parents contacted Carnival regarding what was needed for him to do peritoneal dialysis on the ship. Arrangements were made with Baxter and Carnival was aware of the supplies that were going to be delivered. When we got on board- no supplies were in the cabin as we were told. The purser’s office was contacted and stated that they would be delivered shortly. We waited for about thirty minutes and called again, this time we were told that the supplies would be delivered at the muster drill. After the muster drill we went to the purser’s office and found out that there was no record of the supplies being delivered. My mom left the phone number for Baxter at home and we couldn't get in touch with the dialysis facility at home. Eventually, the captain told the purser that my father would have to leave the ship. I told my mom to stay on the ship and I left with my father. We were rushed off the ship without our luggage, only had time to grab our birth certificates. We were ESCORTED off by four Carnival employees and were told that there would be someone to assist us. When we got to the terminal it was closed and no one to be found. My mom called me on my cell to say that she was able to get in touch with Baxter and the supplies were delivered to the Carnival Legend and someone signed for them. I spent the next two days on the phone with Carnival and Baxter trying to figure out what happened. I had another supply delivered that night to my cousin's house in Ft. Lauderdale. I had to make an appointment with the passport office, flight arrangements to Panama, and hotel reservation in Panama. I spoke with Corporate that Monday morning and informed them of that Baxter did deliver the shipment. Corporate told me that we would only be reimburse for the missed portion of the cruise not for the cost incurred in catching up with the ship, which I told them that was ok and I would take care of it later. When we did catch up with the ship, the assistant purser came to the room for us to clear customs and I told her that there was no one there to assist us as she had stated prior to us leaving the ship, no phones, and luckily I had my cell phone charger in a book bag that I carry. Several days later, my family was told to come to the purser’s office and bring all of my receipts, which was about $1200 for airline tickets, $67 hotel, $320 passports, $200 food, clothes (luggage had not arrived to the cabin) and toiletries. The Purser told us that they were going to reimburse us all of our expenses in addition to my cruise fare and parents fare because we are loyal Carnival customers and they saw where we always had a large group and had another cruise that following Dec 06. We had balcony cabins side by side. We still do not know what happened to the solutions, however we suspect that Carnival found them and didn't want to admit it but made up for it by the reimbursement. This year we have a cruise planned on the Victory 12/16/07. The problem that we are facing now is my father is no longer able to do peritoneal and he has to do his treatment at the ports. It is no guarantee that we will tender in Grand Cayman and we have to use Jamaica as a back up. We are stopping in Ocho Rios, which has no dialysis facility. We will have to travel to Montego Bay. All of this is out of pocket.

If I were you, I would take a suitcase with all of the needed solutions and not take a chance with delivery. We traveled from the US to Panama with two suitcases of solutions. It was wrapped in plastic. We had to cut the plastic for customs to see in Panama. We did not have travel insurance because we thought that we had everything covered. This year we have purchased travel insurance. My dad made a stand that collapses for travel. He made it out of PVC pipes. The stand is small where it sits on the table. Sorry for the long reply.

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rtfnl..thank you so much for your reply.

 

If that had happened to me I woud be totally bummed. But it sounds like Carnival did the right thing for you and your family.

 

Now, I know that I absolutely must be in contact with our supplier (Fresenius) prior to boarding.

We are flying in the day before our cruise so I'll have two days to make sure the supplies are delivered.

I don't have enough solution to bring with us in our luggage. It's an 11 day cruise so we would need 11 boxes or more.

Luckily the ship we are sailing is very small. Only holds 490 passengers. Should not be too hard as long as the company Fresenius does their part.

 

Thanks for all your help.

BTW if my Dad was still alive, he would have done the same thing and made a stand for my husband.

Hope your Dad is doing well.

And we definately have travel insurance but sure hope that we won't have to use it.

 

Joannie

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I plan to take my cycler and 5 boxes of solution on a carnival cruise in November. Would appreciate any insight and/or recommendations on getting these items thru customs and aboard the ship.

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Let them stay in the boxes and tape luggage tags too them. Once at the port have the outer to request everyone assist you in getting the solutions on the ship. Please tip . A person who travels with us does this reach time.

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