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Author Topic: Our first Nocturnal Hemo Dialysis Cruise, and how it was (almost) flawless  (Read 2393 times)
justjen321
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« on: April 13, 2013, 02:14:07 PM »

Warning - LONG

Our first cruise doing Nocturnal Hemo, and how it was (almost) flawless

So, we've just come back from our first cruise doing Nocturnal Hemo. We've cruised previously while on PD, but below are some pointers and observations about cruising with the NxStage machine. We cruised the Carnival Breeze out of Miami. We live in Indiana, and chose to drive to Miami.

Planning:

When we booked our cruise, I also called 'Special Needs' at Carnival to verify that they didn't need anything specific from me. No paperwork was required. They arranged to have a sharps container in our cabin. They also let me know that if I alerted the porters, our medical stuff would be carried by someone specifically from the luggage drop off to our cabin.

Our center called in our vacation order with NxStage. (Do this about a month in advance if you can.) To get into that a bit more deeply: When we cruise (this was our 12th cruise) we ALWAYS spend the night before the cruise in a hotel near the port. It starts our vacation out right. You CAN have your fluids delivered to the ship, but I have never allowed that to happen. Why? Because I researched Cruise Critic a BUNCH before we cruised with dialysis, and read far, far too many stories of deliveries getting lost, (Cruise ships turn over 4000 passengers in a matter of just a few hours, and their cargo gets loaded at the same time. Dialysis supplies do not look like passenger luggage, so imagine how easily it can get tucked into the wrong place.) which equated to dialysis patients being unable to cruise, because the ship cannot pull away until it's been confirmed that all your supplies are in your sight. SO. I choose to have the supplies delivered to the hotel we stay at, and I transport them to the ship myself. I also call the hotel a day or two before we leave home, so I'm not getting a nasty surprise on arrival. We pack our peripherals here, and haul them with us. I pack LOTS extra, just in case something happens. (Case in point, I punctured a saline bag on accident this trip, but no harm, no foul, as I had a spare.) Lots of the supplies Hemo patients use will NOT be available on a cruise ship, so don't get caught with your pants down. I personally made myself a checklist when we first started traveling, and I tape it to the wall in the office where we store our supplies. As I pack, I highlight the things I've packed, and can easily glance and see if I've missed anything.

We borrowed the canvas wheeled carrying case from our center as well.

I've heard that some cruise lines allow only PD dialysis patients, not hemo patients. I've not had experience with that, but on Carnival, they allow both, although I'm not sure I ever mentioned 'hemo' specifically.

I carry a binder with me whenever we travel that has ALL my husbands medical information in it. Copies of all tests, surgeries, xrays, lab work, EVERYTHING that happens to him is IN that book. I also carry several copies of a list of all his meds, and what they are for. I also carry a letter from his Neph that states that we are home hemo dialysis patients, and that he is perfectly capable of travel. (Just in case.) I carry our Wellbound phone numbers, because frankly, if I DID forget something, they do a really impressive job of trying to track it down wherever you are and help you out that way! His NxStage manual comes with us, as does his binder with run sheets in it.

On Arrival to the Port:

When we arrived at the location to drop off our luggage, I explained to the porter that we were carrying extremely important medical equipment, including a VERY expensive piece of machinery, and I would need someone to hand deliver these things to our cabin. (Pre-cruise, I had printed a stack of luggage tags from Carnival and taped them to ALL the boxes. Each and every one.) The porter seemed slightly confused, but he called over a supervisor, and the supervisor worked magic. They called for a 'basket' and the NxStage, bags of peripheral supplies, and 21 boxes of fluids and cartridges were whisked away. (Be prepared to be very clear, very vocal, and to tip well.) If you sense ANY confusion in what you are asking for, get a supervisor. Be polite, and calm, but firm. Trust me, they want to help you, you just may have to tell them EXACTLY HOW to help you.

(We are Platinum Cruisers on Carnival, so check in for us is faster than it is for most, because we totally rock!) Half an hour after I left our bags with the porters, we walked into our cabin to find that every single thing had already been delivered and put in our cabin. This is a VERY awesome moment. I could breathe easier knowing everything was there, and I could also start re-arranging our cabin. I meant to pack a heavy duty extension cord, but forgot. Cruise cabins don't have a lot of outlets, but fortunately, the place I located to set up the NxStage machine (hereafter known as 'Vlad') was close enough to plug into the wall. If you DO forget an extension cord, and aren't as fortunate as I was, ask your porter, they WILL find you one. If you can't communicate well enough with your porter, call Guest Services. THEY will find you one. :)

On the Cruise: (Please be prepared to encounter some language barriers. On every cruise I've ever been on, you won't find American staff. (We've encountered four or five in twelve cruises.) It's just common to how cruise ships hire. They will speak English, but you may have to alter HOW you have conversation with them to be understood.

Fortunately, our cabin was perfectly laid out for me to set up Vlad. There was a coffee table in the cabin that I moved to the side of the bed where my husband would be sleeping, and it held Vlad faithfully all weekend. As above, if you can't find a suitable place, talk to your room steward. They are incredibly valuable resources.

So now you are standing there, looking at this massive amount of supplies, and you are probably thinking about crying, because cruise cabins aren't huge. They do, however, have lots more storage space than you would expect. And if you have too many boxes, your steward (I know, the Steward again!) can likely help you find somewhere else to store the excess, and fetch them for you when you need them. Trust me, they WANT to be helpful to you. (Tips, dontcha know?)

We did three overnight treatments while on the ship, and aside from the first night, they went perfectly. :) The first night was nothing actually to do with the cruise itself, but with hubby's arm sweating and setting off his enuresis alarm. After that, I kept the room cooler at night, and no problems were had. We do Nocturnal Hemo, and it takes 50L of fluid. Because heater sets can only accommodate 5 bags (25L) I do set an alarm, get up in the middle of the night, and swap out the bags so we get the full treatment. If you do short daily hemo, you won't run into that! We -could- switch to short daily during vacation, but Nocturnal makes him feel better, and you pretty much want to feel good when on vacation. Sticking can be a little more difficult than at home, but that's to be expected any time you are not in the exact position you usually are.

To get your weight, it can be tricky. Guess what? The ship... it MOVES. And YOU will move too while trying to weigh. The biggest tip I have is to weigh yourself WHILE in port when the ship is absolutely stationary. We were unable to get EXACT weights before two treatments, and you need to be aware of that. Guess what else? Most ships have the old style manual scales in their spa/exercise area, and you CAN get a more accurate reading on that! (I just didn't think of that till we were done doing treatments.)

If you DO do short daily, and you have a balcony cabin, you can pretty likely set up dialysis on the balcony outside. :) There are worse things than cruising along in the Caribbean while dialyzing on your balcony. I WILL warn you to be certain you can have enough shade. That'd make for a pretty nasty little sunburn.

Leaving the Ship: On a cruise, you leave your luggage out the night before you dock, and they take it away. Do not do this with your medical stuff. We called Guest Services, alerted them to the fact that we would be departing the next morning with expensive machinery and life saving medical equipment. Here again, be prepared to TELL THEM WHAT YOU NEED. Do not ever assume that they will simply know how to handle your request. We explained to them that our medical stuff would need picked up early in the morning, and that it would need to be hand delivered OFF the ship, as the machine and supplies really can't be tossed around like a sack of potatoes in the cargo hold. (And believe me, that's EXACTLY what happens to your luggage.) And this right here is where we lost the 'Flawless' from the experience. It seems the gentleman sent to pick up our medical stuff wasn't sure exactly WHAT he was supposed to do with it once he picked it up. (I blame myself here. I assumed Guest Services had given him a plan, and I did not question him at all. ) We were off the ship for two hours before they finally found Vlad, sitting forlornly STILL on the ship in the 'Guest Services' office. While frustrating, honestly, it was a very minor blip in a REALLY great cruise. So below, some additional advice.

-Don't panic about having to cart stuff around. Everywhere you go, there should be folks there to help you. Bellmen at hotels, porters at the cruise terminal, room stewards on the ship, etc. I did wangle Vlad around a bit, but I can, and was impatient. :)

-Please, PLEASE realize that when you go on a cruise ship with your NxStage, it is almost 100% likely that the medical staff on board will have almost NO knowledge of your condition, and any special tricks to treating a dialysis patient. What does that mean to you? BE EDUCATED. Speak with your center BEFORE you cruise, and ask questions, and make notes. Ask things like 'If Bob gets sick on the ship and needs antibiotics, what are the best ones for him, and do they dialyze out?' (Because you will need to have a variety of choices, and you will need to know if they DO dialyze out, so you can adjust when you give them.)

-During the process of boarding and disembarking, please, be prepared to speak up about what you need. Be incredibly detailed with porters and others who will come into contact with you, and watch their faces to be certain you are being understood. This machine, and it's supplies, getting to your cabin is absolutely paramount to your trip, so be pro-active and don't be afraid to speak up. You might be inclined to think that 'they know what they are doing'. Frankly, often, you'd be wrong. They don't. They are not versed in home dialysis. YOU are, so be responsible. :) They WANT to help you, they just need direction in HOW. When Vlad went missing after our cruise, and I hadn't seen him in the luggage area after about twenty minutes, I found someone in a suit, and put him on the task. I did NOT just walk away and expect him to handle it. I exchanged phone numbers with him,and we spoke regularly about what was happening. When we were 45 minutes into the process and no one could find Vlad, I nicely explained to him it was time to fetch me a supervisor, because that ship absolutely could NOT leave again with Vlad on board. 10 minutes later, Vlad was found. Still sitting on the ship! (It took much longer to get him through customs because he was not coming through without his owners, and customs was incredibly confused by this.) But again, don't pass your stuff off and expect magic to happen. MAKE the magic happen.

-Essentially, while it takes a little extra pre-planning, the whole goal of doing home dialysis is to be able to continue a normal life. Vlad has been in countless hotel rooms, a cabin in the smokies, to campgrounds, and now, on a cruise ship. We've dialyzed outside in campgrounds so hubby could still be in the thick of things while getting himself all cleaned out. We do Nocturnal now, so really, we lose NONE of our vacation time to Vlad at all. He does his job while we do our sleeping. :)

-Airlines - We've yet to travel with Vlad on an airline, but we did travel while on PD. Read up and know your rights when traveling with medical supplies. Airlines cannot charge you for your NxStage, nor your supplies. When you pack medical supplies into a suitcase or whatever you carry it in, pack NOTHING personal, and ONLY supplies. Be prepared to have conversations with people all across the airport, from the check in people, to the baggage people, to the security people. When traveling with PD stuff, it was suggested that we should keep enough supplies WITH us in case the plane had to land somewhere unexpected. I was surprised at how easy it was to board the plane with a rolling suitcase full of PD fluids, scissors, and all manner of things. All it took was intelligent conversation with the security folks, and a brief visit to allow them to swab the outsides of a few of the bags. The more educated you are about things, the easier it gets. We have actually done PD IN an airport. :) We asked, and they showed us to a room where their 'medical staff' works from. It was clean, neat, comfortable, and actually had an IV pole in it. If you do start to experience difficulty in an airport with a staff member there, please remember that your situation is largely unique, they've probably not run across it often, and ask for the Crisis Resolution Officer (Or something similar to that.) Every airport has one, and it's their job to help you. They are also usually FAR more educated about traveling for those who have special needs.
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TIA reveals failed kidneys (completely unexpected) January 2011
Husband on home PD since May, 2011
Switching to NxStage Home Hemo Nocturnal early spring of 2011

http://failedbeans.blogspot.com/
MooseMom
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« Reply #1 on: April 13, 2013, 03:19:18 PM »

This post needs to be stickied!!!!!!!!!!!!

Brilliant, brilliant post; it will be incredibly useful for all those who want to travel with dialysis.  Thanks so much for posting it.  I gleaned two things of particular importance.  One...gather any and all information you could possibly need, and two...assume that none of the "travel staff" will have ever had any experience with travelling dialysis patients.  This doesn't make them stupid, it just makes them uneducated, and there is no sin in that.  If you are patient, calm and explain things carefully using simple language, you can pave the way for the next D patient the staff comes across.
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« Reply #2 on: April 13, 2013, 05:07:23 PM »

Great information JustJen! Thanks for taking the time to share it with us. And I agree with you, communication is the key to a smooth trip. Let everyone you interface with know what you need and they will typically bend over backwards to accommodate you.
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« Reply #3 on: April 13, 2013, 06:59:01 PM »

Yes, excellent information, some of which I wish I'd known when I still traveling on PD.  I had a heck of a time explaining to airport (mainly Air Canada) staff that the large, wheeled suitcase that I had contained life sustaining medical equipment and medication.  They still would not allow me to carry it on the plane.  We ended up putting a crapload of  fragile stickers all over the case and checking it, but they still managed to break the door on the cycler on our way home.  They fixed the case, because it was broken too, but refused to pay for repair of the cycler.  We were just lucky that it happened on the way home, and not when we were leaving, because it would have made for one nasty vacation.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
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us and fam easter 2013

« Reply #4 on: April 13, 2013, 08:14:15 PM »

So glad you posted this, and so glad yu did the trip:)  We're still hoping for bo's hemoglobin to leval out so we can plan a trip ... This will be printed and ready to go:)))))))))))))   :thx;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
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