Cruising with Home Dialysis—Tips from a Platinum Cruiser
So, we've just come back from our first cruise doing nocturnal HD. We cruised the Carnival Breeze out of Miami. We live in Indiana, and chose to drive to Miami. We cruised before while on PD, and below are some pointers and tips for cruising with a NxStage machine (which we call “Vlad”) and a sample packing list for both PD and home HD.
When we booked our cruise, I called the “Special Needs” phone number at Carnival to verify that they didn't need any paperwork from me. They arranged to have a sharps container in our cabin. They also let me know that if I told the porters, our medical stuff would be carried by someone from the luggage drop off to our cabin.
I've heard that some cruise lines allow only PD dialysis patients, not HD patients. I've not run into that, but on Carnival, they allow both, though I'm not sure I ever said “hemodialysis”.
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 sent to the ship, but I have never let that happen. Why not? 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. When this happened dialysis patients could not cruise, because the ship cannot pull away until it's been confirmed that all of your supplies are in your sight.
I have supplies sent to the hotel we stay at, and 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 extra, in case something happens. (Case in point, I punctured a saline bag this trip, but no harm, no foul, as I had a spare.) Lots of the supplies you use will NOT be available on a cruise ship, so don't get caught with your pants down.
I made a checklist when we first started traveling, and 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 borrow a canvas wheeled carrying case from our center. If you use the metal case, you can use it as a machine stand.
I carry a binder with me when we travel that has ALL my husband’s medical information in it. Copies of all tests, surgeries, X-rays, lab work, EVERYTHING that happens to him is in that book. I also carry a few copies of a list of all his meds, and what they are for, and a letter from his neph that states that we are home HD patients, and that he is perfectly capable of travel. (Just in case.)
I carry our Wellbound phone numbers, because if I DID forget something, they do a really impressive job of trying to track it down wherever you are and help you out!
His NxStage manual comes with us, as does his binder with run sheets in it.
Pre-cruise, I printed a stack of luggage tags from Carnival and taped them to ALL the boxes. Each and every one.
On Arrival to the Port
When we arrived at the site to drop off our luggage, I told the porter that we were carrying vital medical equipment, including a VERY expensive piece of machinery, and would need someone to hand deliver these things to our cabin.
The porter seemed slightly confused, but called a supervisor, who worked magic. They called for a “basket” and Vlad, bags of supplies, and 21 boxes of fluids and cartridges were whisked away. (Be prepared to be very clear, very vocal, and to tip well—$1 per suitcase or box, even if there are a lot of them.)
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. Just half an hour after I left our bags with the porters, we walked into our cabin to find that every single thing had been delivered and put in our cabin. This was a VERY awesome moment. I could breathe easier knowing everything was there, and could 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 the place I chose to set up Vlad was close enough to plug into the wall. If you DO forget a cord and need one, ask your porter. He or she 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 expect to run into some language barriers. On every cruise I've ever been on, you won't find American staff. (We've met only 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 talk with them to be understood.
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 sleep, and it held Vlad all weekend. If you can't find a suitable place, talk to your room steward. Stewards are truly valuable resources.
So, now you are looking at a massive amount of supplies, and maybe thinking about crying, because cruise cabins aren't huge. They do, however, have lots more storage space than you would expect. If you have too many boxes, your steward 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 on the ship, and aside from the first night, they went perfectly. The first night, hubby's arm sweated and set off his enuresis (moisture) alarm. After that, I kept the room cooler at night, and we had no problems. A few notes:
We do nocturnal HD, and it takes 50 liters of fluid. Because heater sets can only hold 5 bags (25 liters), I set an alarm, get up in the middle of the night, and swap out the bags to get the full treatment. If you do short daily HD, 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 can be tricky. 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 still. We were not able to get EXACT weights before two treatments, and you need to be aware of that. Most ships also have the old style manual scales in their spa/exercise area, and you can get a more accurate reading on those! (I just didn't think of that until we were done doing treatments.)
If you do short daily, and 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 have enough shade to avoid a nasty little sunburn.
Leaving the Ship
On a cruise, you leave your luggage outside the door the night before you dock, and they take it away. Do not do this with your medical stuff. We called Guest Services, alerted them that we would be departing the next morning with expensive, life saving medical equipment. Here again, be prepared to TELL THEM WHAT YOU NEED. Don’t assume that they will just know how to handle your request. We explained that our medical stuff would need to be picked up early in the morning and hand delivered OFF the ship, as the machine and supplies can't be tossed around like a sack of potatoes in the cargo hold. (Believe me, that's EXACTLY what happens to your luggage.)
This is where we lost the “Flawless” from our trip. The gentleman sent to pick up our medical stuff wasn't sure what he was supposed to do with it once he had it. (I blame myself. I assumed Guest Services had given him a plan, and did not question him.) We were off the ship for 2 hours before they found Vlad, sitting forlornly on the ship in the Guest Services office. While frustrating, it was a very minor blip in a REALLY great cruise.
So below, some more advice:
Don't panic about having to cart stuff around. Everywhere you go, there should be folks to help you. Bellmen at hotels, porters at the cruise terminal, room stewards on the ship, etc. I did wrangle Vlad around a bit, but I can, and was impatient.
When you cruise with your NxStage, it is almost 100% likely that the medical staff on board will have almost NO knowledge of your condition, or any special tricks to treating a dialysis patient. So, BE EDUCATED. Speak with your center BEFORE you cruise. 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?' (You will need to have a choices, and you will need to know if they DO dialyze out, so you can adjust when you give them.)
When you board and disembark, 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 understood. Getting this machine and its supplies to your cabin is absolutely paramount to your trip, so be pro-active. 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 to know HOW. When Vlad went missing after our cruise, and I hadn't seen him in the luggage area after about 20 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. We traded phone numbers and spoke often about what was happening. At 45 minutes in, when no one could find Vlad, I nicely said to him that it was time to fetch a supervisor, because that ship could NOT leave again with Vlad on board. Ten minutes later, Vlad was found. (It took much longer to get him through customs because he was not coming through without his owners, and customs was very confused by this.) But again, don't pass your stuff off and expect magic to happen. MAKE the magic happen.
Read up and know your rights when traveling by air with medical supplies. We've yet to travel with Vlad on an airline, but we did travel while on PD. Airlines can’t charge you for your machine nor your supplies. When you pack medical supplies, pack NOTHING personal, and ONLY supplies in that container. Be prepared explain to people all across the airport, from check in, to baggage, to security.
When we traveled on PD, it was suggested that we should keep some 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 let them swab the outsides of a few of the bags. The more you know about things, the easier it gets.
We have even done PD IN an airport. We asked, and they showed us to a room their “medical staff” works from. It was clean, neat, comfortable, and had an IV pole in it. If you do start to have trouble in an airport with a staff member there, please remember that he or she has probably not run across it often, and ask for the Crisis Resolution Officer. Each airport has one, and it's their job to help you. This person tends to be FAR more educated about travel for those who have special needs.
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, campgrounds, and 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. Happy cruising!
PD Travel Packing List
|Cycler (if used)|
☐ Power cord
|☐ Heavy duty extension cord||☐ Carrying case||☐ Cartridges x ___|
|☐ Machine manual|
|☐ 1.25% (Green) bags x ___||☐ 2.5% (Yellow) bags x ___||☐ 4.25% (Red) bags x ___||☐ Sterile 2 x 2’s|
|☐ Chux x ___||☐ Insulin needles x ___||
☐ Test Strips
|☐ Masks x ___|
|☐ Drain lines x ___||☐ Epo syringes x ___|
|Peripherals & Miscellaneous|
|☐ Health log||☐ Meds lists||☐ BP Cuff||☐ IV Pole|
|☐ Scale||☐ Thermometer|
|☐ Epo x ___||☐ Heparin||☐ Insulin||☐ Antibiotic Ointment|
|☐ Insulin||☐ Antibiotics|
Home HD Travel Packing List
☐ Power cord
|☐ Cartridges x ___||☐ Drain lines x ___||☐ Heparin Pump|
|☐ Heavy duty extension cord||
☐ Alarm Flip Chart
☐ Machine manual
|☐ Peanuts x ___||☐ Heater & Cord|
|☐ Carrying case|
|☐ Dialysate x ___||☐ Saline bags x ___||☐ Heater Sets x ___||☐ Vet Wrap|
|☐ Sterile 2 x 2’s||☐ Alcohol pads||☐ Band aids||☐ Tape|
|☐ Chux x ___||☐ Needles x ___||☐ Insulin needles x ___||☐ Leur Lock syringes x ___|
|☐ Chlorascrub pads x ___||
☐ Test Strips
|☐ Epo syringes x ___||☐ Heparin syringes & needles|
|Peripherals & Miscellaneous|
|☐ Health log||☐ Meds lists||☐ BP cuff||☐ Tourniquet|
|☐ Metal Scissors||☐ Blue scissor clamps||☐ Thermometer||☐ IV Pole|
|☐ Scale||☐ Sharps box||☐ Pliers||☐ Enuresis alarm|
|Epo x ___||Heparin||Insulin||Antibiotic Ointment|