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Bringing TPN (Total Parenteral Nutrition - liquid IV nutrition) on board?


YOLO

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On 2/7/2023 at 5:23 PM, smokeybandit said:

Can she do all the line maintenance by herself or with your help? That's probably the biggest hinderance.

Second would be keeping the TPN bags chilled, but I'm sure you could work with RC on that.

We both can set it up (inject vitamins and medicines into the bag, connect it up to the portable infusion pump, install it in the backpack), run the infusion, and flush the picc line.  Most of the medicine must be kept cold (there are proteins and it is sort of like milk).  The TPN supplies are only for one week at a time, so not sure what to do about a two-week cruise.  Looking for help with this.  I need to learn how to replace the picc dressing, which is done once a week by a visiting nurse.  I think I can learn/do that.  Not sure about the trouble we will have traveling internationally with syringes, needles, TPN medicines, and all of her regular medicines (including opioids)...

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10 hours ago, Carotthat said:

TPN has not to be chilled.

But are you sure, a cruise itself od not a major obstacle under these circumstances?

Our TPN must be chilled and cannot be at room temperature for more than 24 hours.

She infuses 5X a week and for a 14 hour period.  The bag and medicines need to come to room temp for about 4-6 hours before infusion.

Yeah, I am very interested if anyone has taken a cruise with TPN, but the responses here make me think not.

But Ceil really wants to see Norway and so I really want to make it happen for her.

 

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2 hours ago, MaryCS62 said:

I would start by calling/emailing the special needs department -- https://www.royalcaribbean.com/resources/guest-special-needs as soon as possible to find out exactly what you need to do and explain to them what you will need. At the very least, you will probably need them to supply an extension cord for the IV pump.

Thanks, I plan on doing that this afternoon.

FYI, the infusion pump is battery-operated, so we will need to take a supply of batteries with us on the trip!  Once her backpack is all setup, it is completely portable - except for having to carry the weight and size of the backpack around.

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43 minutes ago, YOLO said:

The TPN supplies are only for one week at a time, so not sure what to do about a two-week cruise.  Looking for help with this.  

I don't know where you get your TPN supplies but often pharmacies will give you more than usual if you explain  you are going on a trip.  At least that is what happened with my husband's prescription medication.

Good luck.  I hope you and Ceil gets to visit Norway. 

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1 hour ago, FireFishII said:

I don't know where you get your TPN supplies but often pharmacies will give you more than usual if you explain  you are going on a trip.  At least that is what happened with my husband's prescription medication.

Good luck.  I hope you and Ceil gets to visit Norway. 

 

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https://optioncarehealth.com/  They are an infusion care company and I think their policies are different than pharmacies.  We have a call into them, but so far no luck with how they can help us.  It would be great if they could ship the supplies to RCL in Norway and RCL could deliver them to us on the Anthem.  But so far that doesn't look like it can happen.

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20 minutes ago, YOLO said:

https://optioncarehealth.com/  They are an infusion care company and I think their policies are different than pharmacies.  We have a call into them, but so far no luck with how they can help us.  It would be great if they could ship the supplies to RCL in Norway and RCL could deliver them to us on the Anthem.  But so far that doesn't look like it can happen.

I went to that webpage.  It seems like they have over 125 sites in the US but they don't say anything about international.   But I did find the following:

Plan your infusion therapy care for travel

With enough advance planning, you can safely travel while on infusion therapy. To get started, here are a few things to consider when planning a trip: 

  • Notify us when you begin making your travel plans so we can help address your specific travel needs
  • Tell your physician the details about how you plan to travel and where you will be staying
  • Contact the companies with which you will be traveling and the places you will be staying to let them know about special accommodations you will require (eg. refrigerator)
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1 hour ago, YOLO said:

We both can set it up (inject vitamins and medicines into the bag, connect it up to the portable infusion pump, install it in the backpack), run the infusion, and flush the picc line.  Most of the medicine must be kept cold (there are proteins and it is sort of like milk).  The TPN supplies are only for one week at a time, so not sure what to do about a two-week cruise.  Looking for help with this.  I need to learn how to replace the picc dressing, which is done once a week by a visiting nurse.  I think I can learn/do that.  Not sure about the trouble we will have traveling internationally with syringes, needles, TPN medicines, and all of her regular medicines (including opioids)...

The dressing change isn't that hard.  Just one of those things where you need to do it and give yourself the confidence to do it w/o the nurse.

Other thoughts are, can you get a two week supply? I don't remember how long the bags are good for.

I would definitely want to have RC fully in the loop. With the various potential complications (even if minor) that can come up with a picc line, I'd want some acknowledgement from RC medical that they're aware of it and are prepared for it should they happen.

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Some thoughts:

A picc line is a central venous access into your blood stream. Also for bacteries, if it's not handled properly. 

There is TPN on the (european) market which has not to be chilled. Maybe you can switch?

Is the TPN supplementary or is she completely dependend (would make me wonder with only 14 hours of run time a day)?

The medical services on the ship can for sure manage all of this. But I don't think it is included in the cruise packages' price...

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For people who are on long term TPN, it is often run only 14-16 hrs a day - this is to mimic how most people eat, with a long "fasting" time. This helps because otherwise your body would keep secreting insulin. It will also help her since she won't be tied to the machine all day, every day.  I'm familiar with simple (ie, protein, dextrose, 1 electrolye) that are good for nine days, but I've never seen longer than that - for both sterility and stability purposes. (Hospital pharmacist, 36+ years experience)

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I hate posting from other forums, but there is a thread on this on Cruise Critic that may be helpful.  The original poster was active a couple of days ago offering to help give info on their experiences on cruising with this.  As this is a rather unique special need, it may be good to look into this for their experiences.  I do hope it is able to work out for you!

Cruising with Home Parenteral Nutrition - Disabled Cruise Travel - Cruise Critic Community

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