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How do you travel with IV supplies?


CoffeeAndTulips
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I would like to book a summer 2011 tour of the Norwegian Coast with my 2 kids. My 7 year old is hooked up to IVs 18 hours a day. I need some ideas on how to best get the IV solutions from California to Norway? I'm getting overwhelmed with the thought of multiple plane transfers to get to Bergan while lugging a giant suitcase of just IV medications. I would appreciate hearing from others about what they do to safely transport medications to their ships.

 

Thank you!

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I would like to book a summer 2011 tour of the Norwegian Coast with my 2 kids. My 7 year old is hooked up to IVs 18 hours a day. I need some ideas on how to best get the IV solutions from California to Norway? I'm getting overwhelmed with the thought of multiple plane transfers to get to Bergan while lugging a giant suitcase of just IV medications. I would appreciate hearing from others about what they do to safely transport medications to their ships.

 

Thank you!

 

In general, medical supplies can be packed in their own carry-on and taken aboard the plane and the ship in addition to the passenger having a regular carry-on and a piece of stowed luggage..

 

but..if your child needs IVs 18 hours a day..how will you manage this on the plane? You'd need to do extensive advanced planning to fly, and they're not prepared to deal with that extensive kind of medical treatment, even if it is you doing the treatment. And then are you certain the ship will accomodate this? Would you need some special medical equipment to put the IV's in place? How will your child enjoy the vacation being hooked up to an IV, confined to the cabin...or are you expecting to be able to move him about the ship?

 

I'd be overwhelmed in the planning, too...

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I agree with Uppity on this. Airlines are not obligated to provide things for someone who needs an IV while on a flight. That's beyond the scope of the ADA. Where would you hang the bags? Not even in first class is there a place for that. There's no way to puncture a hole in the wall of the plane to insert some kind of hanger.

 

Before you book, you need to contact the airline you would use to see if they would even accommodate your child and his needs. I would be surprised if they would. They would probably suggest a private med jet. Airlines can restrict passengers who require extraordinary care. Then you need to see if the cruise ship can accommodate your child. Since they are foreign registered companies, they are not technically bound by the ADA and cruise line's small print states they have a right to refuse passage to anyone for medical reasons.

 

I wish you good luck. I think you've chosen something that will be difficult, if not impossible. Your flights alone will be extremely difficult, even if you're in first class.

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My daughter has a permanent IV in her chest, and carries the IV fluid and the little pumps for them in a tiny cartoon backpack on her back. She is completely mobile with this set-up - in fact, most people don't have a clue she has medication running from the backpack (they assume she's on the way to school!) So, no poles are necessary ;). I'm an RN - so, no other medical back-up would be expected or necessary - unless there is an emergency, in which case we'd go to a hospital.

 

For our extensive road trips, I just put everything I need in the car and have our Pharmacy mail supplies to our destinations every couple of weeks. I wasn't aware that medical supplies in a suitcase wouldn't count as part of the baggage. I'll keep researching, and appreciate any further input!

 

Thank you!

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My daughter has a permanent IV in her chest, and carries the IV fluid and the little pumps for them in a tiny cartoon backpack on her back. She is completely mobile with this set-up - in fact, most people don't have a clue she has medication running from the backpack (they assume she's on the way to school!) So, no poles are necessary ;). I'm an RN - so, no other medical back-up would be expected or necessary - unless there is an emergency, in which case we'd go to a hospital.

 

For our extensive road trips, I just put everything I need in the car and have our Pharmacy mail supplies to our destinations every couple of weeks. I wasn't aware that medical supplies in a suitcase wouldn't count as part of the baggage. I'll keep researching, and appreciate any further input!

 

Thank you!

 

I'm assuming that she is on 18 hour cycle TPN? If so, you probably won't have too much of an issue with the ship if it is one of major cruise lines (PCL, NCL, HAL, et cetera), but you might if you are going with Hurtigruten. The majors allow pax to travel with PD (peritoneal dialysis) set ups, and the technology is similar, so long as fleet medical is notified in advance and has appropriate information from the pax' health care provider(s), they would probably approve her to sail. I'd be more concerned about the airlines and, if it is the kind that needs to be refrigerated, the fact that there are no fridges big enough to handle the voume you would have to take with you for a week or more.

Edited by SeattleCruiselover
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Yes, she's on an 18 hour TPN cycle (short gut). Unfortunately, it is a large volume (2000ml each day) and needs refrigeration. I wasn't sure if medical refrigerators could be arranged in the medical section of the ship, or if only small fridges were available. I know of other TPNer's who have done the Disney cruise without problems, but, that was from a local port - and, pre-arranged by the Pharmacy we use. Thank you for your input. It helps to have these obstacles pointed out, so that I can either find a way or change our destination!

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Which routes are you flying? While the ACAA allows you to travel with the supplies and not have them count towards your baggage, this only applies to flights arriving in and/or departing from the US. If you are on a flight connecting anywhere outside of the US to another destination outside of the US it is totally up to the airline what does and does not count. And I can tell you from experience that most European carriers will hit you with it counting. That or perhaps allow you a max. of too little kilos extra when presenting a dr's note. US-based airlines tend to just have the same regulations.

 

TSA is not a problem, as any medical liquid that exceeds the 3-2-1 rule is excempt. You'll have to inform them you've got medical liquids in your carry on and have them ready to be inspected if TSA feels like it but that's about it. Unless you get somebody with a bad mood they won't blink twice. They've seen and done it all before. This is the same worldwide. If any security employee abroad questions whether it's allowed or not, kindly but firmly ask for a supervisor. To them explain what is going on and that it is excempt. You could still get the :confused: look, but that should be about it. If it doesn't look like that; EU is the "magic" word.

 

I'm not on TPN but am familiar with what it comes along with. Use tubefeeding myself and am going through the mills to find out if it's enough or it'll have to be parenteral. It shouldn't be a biggie at all as long as you're on flights that depart from the US or land in the US. That's the easiest not having to worry about the weight and/or size. European carriers are challenging, so to say. I'm planning a month long solo trip with my first flight unfortunately being within Europe, so you can imagine the creativity there. ;-) Heck, it's not just Europe-bound but that's all that is interesting for you at the moment.

 

To make things easier; always have the identification forms still left on all. This way the TSA-officer and his collegues at whatever airport in Europe you come across can easily identify products when checking. Have your doc write a little note in case she has to use any supplies with any needles on them. Normally not needed but not all of these officers are familiar with all of the possible supplies as they aren't that daily seen by them. It's easier to just go "see, it's medical, voilà" than having a discussion.

 

If you do decide to have the nutrition in checked baggage (undoable otherwise IMHO); inform the airline upfront! Most of these types of nutrition are not to be stored below certain temperatures or as in your case; need to be kept in between certain temps. Cargo holds can get too cold very easily and allthough a lesser risk also too warm. When informed upfront airlines will make sure the cargohold the bag with nutrition is being stored in will have the right temp.

 

Always carry enough supplies in your carry on in case of a delay, rerouting, cancellation etc. It can easily happen and than what? It's a pain with these sizes but I smilingly lug stuff along for nothing rather than being without and not being able to reach my baggage. Be prepared also, just in case a suitcase does go missing. Yeiks! Now what? Have enough in the carry on to get her by the first days. Talk it over with the supplying company. Do they ship abroad in case of emergency? Most brands will have their own offices in many countries. Inform about their location in the areas where you're flying in and the ports. In case of emergency, they might just be able to help you out faster and/or cheaper than your home supplier.

 

Talk to your healthcare insurer. Some will cover having the supplies send to your destination (in this case the ship at port of embarkation) and/or having a supply done by the local supplier. Some will cover a 100% once a year, others will cover a max. amount (for instance like what they pay for your normal orders). The co-payment could be worth not having to worry or arrange things.

 

Talk to travelinsurance. What if (part of) the supplies go missing when having it as checked baggage? Does it get covered? Do they exclude anything medical? Do they cover until a max. amount that does not equal the price of getting it replaced?

 

ALWAYS have emergency info with you. So you can call but more importantly; email and fax her doc, suppliers etc. if need be. If any problems happen, it never happens when you have cellphone coverage or perfect internet. ;-)

 

Talk to the supplier; the better companies have great info about travelling with these types of needs. Depending on their servicemindedness some companies even have smart aids for loan (free or very small charge) to make travel easier than it is when using the stuff that is great for using in daily life.

 

Talk to her nutritionist. If possible for her situation you can sometimes switch type of nutrition, amount, you name it, to make travel easier. Even if it is a change to a bit smaller amount of volumes it can make travel easier when having to multiple it by a number of days.

 

Have some extra supplies with you, more than needed for the vacationdays, traveldays and delays. In a different environement you could find she needs adjustment of the nutrition. It's easy to scale down, but what if she needs more? Or because you find yourself dropping some supplies because of getting used to a rocking ship and now need to grab yourself a new sterile part?

 

Look at how she's doing. The pressure of the plane could have an influence on how her body deals with the nutrition. I'ld plan around it as much as possible (obviously not totally possible with 16/24). It's easier to first try a slower intake spead when first in the air and build up if she's doing great than finding she needs it slower and is already not feeling well from starting at normal speed. Some are totally not influenced by this, others are very sensitive to it. Just see how she does and take that as a lead. Does she drink herself or also gets all of that through the TPN? When in the air you hydrate more, so need to drink more to keep hydrated. If she's having a difficult time getting it by mouth (if she does that), consider the option of having it in through her nutrition.

 

Talk to the cruiseline asap because of your need of refrigeration and the vast size of her supply. Do all of the bags need to be refrigerated or just when a box, bag or bottle is opened? In the latter case they should easily be able to accomodate it, but when talking about a supply for the whole cruise it could take more arranging. Don't wait until later, take care of that now. It'll be one thing off your list. Besides, if they aren't able to take care of it you can not cruise so it's a must anyway.

 

 

PS; just reading your post again before pushing "submit". Realise now you get the supplies through the pharmacy. Shame. It's an option but they tend to have no experience with travel and thus not the options as specialised suppliers do. So that's not an option. It could be in Norway though if you run into a problem. As far as prepping goes; go up the food-chain, pun intended. :D Look at the brand she uses and look up their contactinfo. Many will have contactinfo for users. Those lines/mails tend to get answered by very knowledgable people. They'll know if this type of nutrition is available in Norway, if so through whom, what -if any- smart options there are for travelling with this specific type of nutrition. Can come in very handy. Or to give you an idea; my pharmacy would just go "oh, you have to do everything yourself here, outside of our borders you are on your own and lost in case of problems". I use nutrition from Nutricia and contacting them is a different story all together. My supplier is already great (national company that solely does nutritioncare, ideal!) but Nutricia knows even more. From getting me (emergency) contactinfo at each and all ports, to thinking along, to having some savvy stuff that is easier when travelling, whatever. In my corner of the world they are even located on our international airport grounds, talk about being prepared. :cool:

 

As it would be easiest to have supplies waiting on embarkation and "just" lug along for the travel + a couple of days for "what if", I would contact the manufacturer right away. They'll be able to tell you if it's available in Norway and where. Then contact your insurance to see what is covered and what not and what paperwork might be needed. With that total picture you can easily decide if it's doable to have it brought right to the ship or have it in the baggage.

 

Oh and do yourself a favor; never call it IV. You've seen on her how the reactions to that are. :D Airlines, security and what not tend to react even stronger. ;) It's her feedingline. It's nuts in some ways, but reactions to that word are a lot more relaxed. Can still be stressed by those who haven't got any experience with it but for instance a lot less risk of an unknowing airline employee going "you are not allowed to fly with that"/"you'll need medical clearance before being allowed to fly" if not needed. So just play along with that game and talk about feedingline/tube when in communication or hearing range of any of the above. It is the truth, after all. :rolleyes:

 

 

It takes some extra planning and preparing but after that is done, you can have an amazing and relaxing vacation. First time's are the worst. After that you'll get into the swing. Before you know it, you'll find yourself smiling about the worries and "newness" you had before your first time doing this. Honestly. I swear. OK, if you're anything even remote like me. But come on, I couldn't imagine these relative small bumps standing in the way of going on with travels as usual (plus some planning).

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Yes, she's on an 18 hour TPN cycle (short gut). Unfortunately, it is a large volume (2000ml each day) and needs refrigeration. I wasn't sure if medical refrigerators could be arranged in the medical section of the ship, or if only small fridges were available. I know of other TPNer's who have done the Disney cruise without problems, but, that was from a local port - and, pre-arranged by the Pharmacy we use. Thank you for your input. It helps to have these obstacles pointed out, so that I can either find a way or change our destination!

 

All that most lines have are the mini dorm sized fridges (about 1.5 cu ft) or so, and not even in all cabins. Whether you could "reserve" some space in the medical centre's fridge or not would be another thing you could check with fleet medical about. In order to reach them, you call the res agents and ask them to transfer you to a ship's onshore medical coordinator (usually an RN or VN). They can tell you what you can and cannot do.

Edited by SeattleCruiselover
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Is there a particular reason that you want to go to Norway? I think that it is a huge trip from California for two adults (my husband and went from Arizona), and bringing two children, one of whom has significant medical issues, would be really stressful. Plus with hauling medical supplies it would be tough for me to have a "relaxing vacation".

 

I think that most kids would be thrilled about going to Alaska, the Mexican Rivera, Hawaii, etc., and I think that any of those itineraries would be a much easier trip.

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Thank you so much for all of the information and time it took to gather your thoughts and send it to me! I have found further travel tips on www.oley.org - an organization specifically for people with GT (Gastric Tubes) and IV TPN (permanent IV's in the chest for Total Parenteral Nutrition).

 

Norway is for my 18 year old son. It is his dream vacation for graduation. I adopted my little girl after being her nurse in Peds ICU - so, the "medical" part of her condition isn't stressful at all for me (many, many years of this type of care under my belt!) The logistics of actually boarding a couple of planes and a cruise are the overwhelming part! I haven't flown for 20+ years (chicken!), and never cruised past 3 days to Encenada! I love living vicariously through CruiseCritic reviews - but, I hope to be a contributor some day!

 

Char

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Is there a particular reason that you want to go to Norway? I think that it is a huge trip from California for two adults (my husband and went from Arizona), and bringing two children, one of whom has significant medical issues, would be really stressful. Plus with hauling medical supplies it would be tough for me to have a "relaxing vacation".

 

I think that most kids would be thrilled about going to Alaska, the Mexican Rivera, Hawaii, etc., and I think that any of those itineraries would be a much easier trip.

 

 

Does there have to be a particular reason other than just wanting to do said itinerary? Obviously this family views this trip as a "would really like to do it" or not look into it. Just like any other family would. Why should this family change their travel habits just because there child has a medical issue?

 

I know there are lots of people out there that get scared out of their pants when it comes to travel with any type of medical issue, disability or need and kinda let that rule their lives or at least trips. Thats a choice to make and if it fits that person, good for them. Obviously for this family that does not fit them the best. Good for them for not letting it stop them as long as it's medically and logistically possible. Making things easier isn't always what fits each person. Heck, just staying home is a lot easier than any other itinerary. Packing, planning, making arrangements, everybody knows any trip comes with a tad bit more things to do than staying at home does. Yet, I hardly ever run across it as an advice or question to "why not just stay home" when it's a so called healthy family. Why is it this always keeps getting mentioned as soon as it's a situation like OP's family? Nothing personal against you, really, but honestly I am so amazed by letting fear, the unknown and "it's not easy" dictating to such an extend. Might just be me being infected with a passion for travel but just like those with "just" a wheelchair find it logical that a set of wheels doesn't mean you shouldn't want to go on an exciting itinerary anymore, neither do those with any other type of disability, need, or whatever. If it fits the individual/family and it's safe; why not go for it?

 

So it takes some more arranging. So? Obviously this family isn't put off by that if they find it would be doable and safe for the child involved. Good for them. One of the many ways a parent can teach their child by example. This child then does not only get to enjoy the amazing nature of Scandinavia but it also gets another lesson in "do not let your need for TPN stop you to be the best you can be or do whatever you can and want to do".

 

Just because you think it would not be a relaxing trip doesn't mean it wouldn't be a relaxing trip as far as this family is concearned. Who even knows if they're looking for relaxing when it comes to why they want to go on this cruise? The cruise fits their taste in a certain way. They're looking into what would be needed to make it possible to see if it would still fit their family. If it does; great, do it by all means! If it doesn't I'm sure they'll be the first to decide not to do this itinerary but look into another one instead. If you found yourself in the same situation you might have a different outlook on it. Or not. In which case I would be the first to say "good for you" when you decide to go with an itinerary that fits your personality.

 

Purely personal experience? Even if it takes some (a lot) of pre-arranging, trips can be amazingly relaxing after taking care of those and a few stressmoments directly linked to airlines always seeming overly content into finding new ways to hit me with the unexpected and cause problems. It's a bit more work, costs some (a lot) more money, but it is SO worth it. Never mind the suitcases of foods, supplies, aids, lugging along like 3 or 4 carry ons with more medical stuff, the logistics that go into doing this for a solotrip (love solo travel :o ), it is very much worth it to me. I'm not going to let my travel be restricted by fear. My travel is already influenced and in ways restricted due to my health and needs, no need for it to get a further grip than need be. I'm aiming high; I get myself on the more whacky, challenging, longer distance etc. destinations and itineraries. I am a person with a love for travel and got one of those "want to visit/see/do........"-lists. I don't dream or think "if I'm.... than I'll......." but I do it now. I do the distances in a way because of my limitations. I know I can do it today, but have no idea if it's still possible in a couple of years. I happen to deal with a progressive situation, but nobody really knows. I have a mindset that I can still do the more "modest" trips later on. Even bedridden I could still enjoy many things Europe I'm European) has to offer and I want to see one day. However I want to see a lot more than just Europe. And thus you can find me travelling across the globe.

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Char, being overwhelmed is nothing weird. Heck, most parents are when it just comes to "oh help, I'm flying for the first time with my toddler, how are we going to ever do this?!".

 

You'll get there and through the overwhelming feeling when this is something that fits your family. First times are more overwhelming and can be scary. Yet very doable, so no need to let it stop you as long as the airline/flown route and cruiseline can accomodate daughters needs. If not; keep searching. There will be options with both that can accomodate.

 

As a nurse you've got a major thing in your corner; having dealt with things like this and lots worse. Make a list of what daughter needs in order to be able to make this trip. It gives you insight and probably you'll soon find the combo of mom-nurse kicking in and making the arrangements. The overwhelming could kinda be compared to your first day of nursingschool. I can imagine it being overwhelming when just starting out training to think about all the critical things you'ld be doing one day in a PICU and the responsibility. It never is a job to take lightly but now being that nurse the job comes a lot easier than in those days of training and beginning to work. Travel with a need is the same.

 

It is very doable as you've already found by finding other stories of those out there that travel. As long as you find it fits your family and you can afford it (some options that you might need or prefer could cost something extra); go for it. Before you know it you can kinda laugh about this overwhelming feeling and have that great feeling of building special memories together on a great trip.

 

Honestly, if it fits your family, it's medically safe and you can afford it; never let fear, unknown or anything alike stop you from doing what any other family wouldn't do. No need to have the TPN influence your lives any more than it absolutely needs. It's different compared to travelling without it, very true. But as you also know different doesn't equal something bad.

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I travel extensively with my DS with multiple disabilities, I think when a child has to deal with medical issues daily, any distraction, however stressful for the caregiver can be so important to the child. I have found that most of my fears never happen, but so many rewarding moments do. plan for every and any disaster, but then sit back and enjoy. I can't help you with your specific issues, but can only lend support as a Mom, you can do this!

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What about the 18 year-old getting involved with the fact-finding and planning for the trip?

Either he would be able to make the trip happen, or he would understand why it would be necessary to revise his expectations for a graduation present (maybe a different cruise or a student group trip to Norway?).

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Excellent suggestion not to use "IV" in a discussion. The TSA tend to get weird about anything with needles although I travel a great deal with needles and do fine.

 

There are some countries where you are not allowed to bring in anything with a needle. You need to check your own route for such things.

 

The dorm sized fridges on cruise ships are not very cold. Barely enough to cool some cans of soda. Diabetes need to requrest a real fridge for their own needs. You might be able to have more than one in your room with plenty of prior planning.

 

You will also have to consider transfer points along your route and possible stays in hotels.

 

May I suggest that you do a weekend trip with non-stop flights as a trial run before you make cruise deposts and overseas flights?

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  • 7 years later...

I have just run into an issue with IV Therapy while cruising. I have a diabetic foot ulcer. My doctors have prescribed 3 grams of Ampicillin Sulbactam mixed in a 100ml bag of saline, four times a day. Takes about an hour from start to finish. This would require 28 bags of the saline with the 3mg vial attached, 56 prefilled saline syringes, and 28 prefilled Heparin syringes, plus extra tubing, alcohol swabs, gauze, etc. Plus, I'd still have my insulin pump supplies and CPAP machine to carry with me. I called Royal Caribbean and talked to a "medical" representative. Basically, they couldn't guarantee they could treat any issues I may have with my picc line. Plus, no where in the cabin to safely hang the bag while the IV was running.

We ended up cancelling our cruise and are not battling with RCCL to get our money back.

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I'm not understanding the 'nowhere in the cabin to hang the IV fluid' statement. Sure, there is no hook in a convenient place, although I have sailed in cabins that had hooks for robes within the cabin. But there are suction cup hooks that could be affixed to any wall, even the balcony door, and easily hold a 100 cc bag of fluid + vial. I'm assuming that this situation came up after you had booked - and do not have insurance. EM

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I have just run into an issue with IV Therapy while cruising. I have a diabetic foot ulcer. My doctors have prescribed 3 grams of Ampicillin Sulbactam mixed in a 100ml bag of saline, four times a day. Takes about an hour from start to finish. This would require 28 bags of the saline with the 3mg vial attached, 56 prefilled saline syringes, and 28 prefilled Heparin syringes, plus extra tubing, alcohol swabs, gauze, etc. Plus, I'd still have my insulin pump supplies and CPAP machine to carry with me. I called Royal Caribbean and talked to a "medical" representative. Basically, they couldn't guarantee they could treat any issues I may have with my picc line. Plus, no where in the cabin to safely hang the bag while the IV was running.

We ended up cancelling our cruise and are not battling with RCCL to get our money back.

 

Cruiselines are not responsible to treat anyone regarding on going medical procedures during their time on the cruise. Though the cruise line cannot restrict you from cruising it's you responsibility to either be able to handle the IV's or have someone with you that can manage the IV's for you. In otherwords Cruise ships cannot provide services that are typically provided by in-home healthcare , assisted living or nursing homes nor is it reasonable for a passenger to expect that such services should be provided.

 

If an issue were to occur regarding the pic-line it's more than likely you'd have to be off-loaded from the ship (possibly air lifted ) and transfered to the nearest hospital. Cruise ship Medical Facilites are not a fully staffed hospital.

 

Perplexed as to why you would even mention "Battling with RCCL". You booked the cruise with unrealistic expectations of what you thought the cruiseline would provide in the way of assistance with you're on-going medical condition. RCCL is under notobligation to refund you any money provided the cancelation wasn't prior to the final payment.

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I know of no cruiseline that would take responsibility for a picc line. This incident has come up on luxury/premium lines, and were told the same thing. They are not staffed as a hospital sterile environment, and are unable to provide service as such. If you indeed had taken no insurance, this is a costly reminder why you need it, as we all know, things do happen. Pls do not blame RCCL, they should not be refunding your money if you are after their cancelation time.

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Hello FingerLakeMike, My DH had a PICC line about 16 months ago for antibiotics after surgery. We received a shipment of baseball-sized plastic balls that I attached to the line every 12 hours for 10 days. Everything was premixed and I had lots of alcohol wipes. We were at home but we didn't need an IV bag/pole and there were no needles involved. Just screw the 2 tubing pieces together. The home health care nurse showed me how to do it. The balls went in the fridge until needed. So the real dilemma is that we could get to the local hospital if needed but you would not be able to. At the moment, I am responsible for unhooking his 2-day chemo infusion every 2 weeks and helping manage his ostomy. It is amazing what we can do with a little training!

Departing on cruise in 3 weeks...doctor said go for it so we are.

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