Cruising with Home Parenteral Nutrition

Hi, I suppose that this is a long shot but I am hoping that someone may have experience or knowledge of cruising with Home Parenteral Nutrition (HPN). This is nutrition that is provided in liquid form via a tube directly into a vein. It is provided to people who have acute or chronic intestinal failure and unable to absorb any nutrients from food or absorb fluids.

The reason I ask is that my fiancee, Tracy, has recently been diagnosed with chronic intestinal failure and needs HPN for 12 hours a day. We are experienced cruisers and the thought of not cruising again is not something that we want to have to consider.

We realise that even though Tracy would not be able to eat anything there wouldn't be any discounts available but the main issue would be the storage of the nutrition bags which are 2.5L each. The bags need to be kept in a fridge for sole use of the bags. She would use 1 bag each day therefore for a 14 night cruise there would be 15 bags. We would cruise from the UK so there would be no issue regarding flights etc.

As I said at the beginning, this is a long shot and just wondered if anyone had any experience of this as we really don't want to stop cruising. :(

Many thanks for reading this.

Best regards

Ian

Hi, I suppose that this is a long shot but I am hoping that someone may have experience or knowledge of cruising with Home Parenteral Nutrition (HPN). This is nutrition that is provided in liquid form via a tube directly into a vein. It is provided to people who have acute or chronic intestinal failure and unable to absorb any nutrients from food or absorb fluids.

 

The reason I ask is that my fiancee, Tracy, has recently been diagnosed with chronic intestinal failure and needs HPN for 12 hours a day. We are experienced cruisers and the thought of not cruising again is not something that we want to have to consider.

 

We realise that even though Tracy would not be able to eat anything there wouldn't be any discounts available but the main issue would be the storage of the nutrition bags which are 2.5L each. The bags need to be kept in a fridge for sole use of the bags. She would use 1 bag each day therefore for a 14 night cruise there would be 15 bags. We would cruise from the UK so there would be no issue regarding flights etc.

 

As I said at the beginning, this is a long shot and just wondered if anyone had any experience of this as we really don't want to stop cruising. :(

 

Many thanks for reading this.

 

Best regards

 

Ian

Might it be possible to rent refrigeration equipment from one of the companies that rents other medical equipment (wheelchairs, scooters, lifts, etc.)?

I'd think there would be more and more need for these somewhat more specialized services.

We have a similar issue on a much smaller scale.

We recently had a med changed to a freshly formulated version, one that does not have the preservative (which also acts as an irritant). But... it must now be kept frozen longer term (month), or chilled (week).

We've traveled within the USA thus far, and kept the little vials in ice water, for up to a week.

For longer, and for overseas, we are still using the formula with the preservative.

So, IF you find a source, could you share it here?

We are about to start looking for something.

However, for us, it is not yet critical, a "must have", the way it is for you.

(I don't suppose there are any canned versions that are temperature stable, or anything like that? Or powdered versions that could be mixed with sterile water? [iV solutions do need very careful handling, of course!]Have you asked her medical team - or even a travel clinic - for help exploring if there are any such options? Are there any backup versions in case of emergency if electricity is lost at home or such?)

Others suggested that we ask hotels/ships if we could store the meds in their freezer/fridge equipment. Other than the fact that I doubt this would be possible, we really would NOT want to depend upon essential medical supplies that leave our possession... and expect that they'd "be there" when we needed to retrieve them. (Or trust that they remained IN the refrigeration/freezer unit the entire time, if space got tight, etc....)

Good luck!

GC

Talk directly with the medical department of the cruise line your thinking of. They would have to approve her coming on board . Their issue would probably be the diesaese not the food bags.

Hi, I suppose that this is a long shot but I am hoping that someone may have experience or knowledge of cruising with Home Parenteral Nutrition (HPN). This is nutrition that is provided in liquid form via a tube directly into a vein. It is provided to people who have acute or chronic intestinal failure and unable to absorb any nutrients from food or absorb fluids.

 

The reason I ask is that my fiancee, Tracy, has recently been diagnosed with chronic intestinal failure and needs HPN for 12 hours a day. We are experienced cruisers and the thought of not cruising again is not something that we want to have to consider.

 

We realise that even though Tracy would not be able to eat anything there wouldn't be any discounts available but the main issue would be the storage of the nutrition bags which are 2.5L each. The bags need to be kept in a fridge for sole use of the bags. She would use 1 bag each day therefore for a 14 night cruise there would be 15 bags. We would cruise from the UK so there would be no issue regarding flights etc.

 

As I said at the beginning, this is a long shot and just wondered if anyone had any experience of this as we really don't want to stop cruising. :(

 

Many thanks for reading this.

 

Best regards

 

Ian

Not as much as a long shot as you may think as have often seen cruise passengers requiring the same method of nutrition. Most cruise line cabin refridgerators are bascially coolers. However you can contact the Special Needs Dept of the cruise line you've select and request a Medical Refridgerator be placed in your cabin. This is done free of charge. Addditionally assume you will be traveling to the ship with the packs in a cooler . The cooler could be your back up as you can request ice from the cabin attendent each morning and night.

Notice you've cruise RCCL in the past. If it's RCCL you're considering the contact information is :

Link for RCCL's on-line Special Needs Form https://secure.royalcaribbean.com/allaboutcruising/guestSpecialNeeds.do

Telephone contact information for RCCL's Special Needs dept in the UK +44 (0) 1932-834243

Not as much as a long shot as you may think as have often seen cruise passengers requiring the same method of nutrition. Most cruise line cabin refridgerators are bascially coolers. However you can contact the Special Needs Dept of the cruise line you've select and request a Medical Refridgerator be placed in your cabin. This is done free of charge. Addditionally assume you will be traveling to the ship with the packs in a cooler . The cooler could be your back up as you can request ice from the cabin attendent each morning and night.

 

Notice you've cruise RCCL in the past. If it's RCCL you're considering the contact information is :

Link for RCCL's on-line Special Needs Form https://secure.royalcaribbean.com/allaboutcruising/guestSpecialNeeds.do

Telephone contact information for RCCL's Special Needs dept in the UK +44 (0) 1932-834243

This is very interesting, and potentially very good news. Thanks!

This particular need is new for us.

We'll start checking with the cruise lines with whom we have future reservations to see if they can supply a "medical quality" refrigerator, rather than the little mini-fridge things that wouldn't be cold enough.

Do you happen to know if they ever provide units with freezers? At least in our situation, the physical volume needed is relatively small, as we'd have a bunch of very small vials. It's the temperature that's critical, not the amount of space.

And we'd always travel with the backup supplies with preservatives, just in case. (But over time, that can exacerbate the condition, we recently found out, hence the specially compounded "fresh/frozen" version.)

Our little freezer pack (land travel only thus far) certainly occupied the attention of several airport security personnel, but once they inspected it, by machine and hand/eyeball, they let it, and us, through. And they were very polite the entire time, a very nice surprise!

Thanks again.

GC

Talk directly with the medical department of the cruise line your thinking of. They would have to approve her coming on board . Their issue would probably be the diesaese not the food bags.

Not familiar with the Privacy Laws in the UK and Europe. However in the USA you are not required to disclose the medical condition to the cruise line nor can the cruise line ask for that information. The OP does NOt have to speak directly to the medical department unless they elect to do this on their own. Additionally the medical dept does not have to approve the passenger prior to booking.

All cruise line contracts have a Fit-to-Travel Clause. Such a clause basically states that the passenger warrants that he and those traveling with him are fit for travel and that such travel will not endanger themselves or others. That if the passenger requires any assistance for personal needs that they travel with a companion or aid as the cruise line does not provide such services.

As long as the individual has been approved by their own doctor to travel than no other approval is necessary. Nor is anyone required to disclose their medical conditon. Additionally of the medical condition is contagous his or hers own doctor would not approval traveling.

Do you happen to know if they ever provide units with freezers? At least in our situation, the physical volume needed is relatively small, as we'd have a bunch of very small vials.

 

GC

Only medical refridgerators.

Might it be possible to rent refrigeration equipment from one of the companies that rents other medical equipment (wheelchairs, scooters, lifts, etc.)?

I'd think there would be more and more need for these somewhat more specialized services.

 

We have a similar issue on a much smaller scale.

We recently had a med changed to a freshly formulated version, one that does not have the preservative (which also acts as an irritant). But... it must now be kept frozen longer term (month), or chilled (week).

We've traveled within the USA thus far, and kept the little vials in ice water, for up to a week.

 

For longer, and for overseas, we are still using the formula with the preservative.

 

So, IF you find a source, could you share it here?

We are about to start looking for something.

However, for us, it is not yet critical, a "must have", the way it is for you.

 

(I don't suppose there are any canned versions that are temperature stable, or anything like that? Or powdered versions that could be mixed with sterile water? [iV solutions do need very careful handling, of course!]Have you asked her medical team - or even a travel clinic - for help exploring if there are any such options? Are there any backup versions in case of emergency if electricity is lost at home or such?)

 

Others suggested that we ask hotels/ships if we could store the meds in their freezer/fridge equipment. Other than the fact that I doubt this would be possible, we really would NOT want to depend upon essential medical supplies that leave our possession... and expect that they'd "be there" when we needed to retrieve them. (Or trust that they remained IN the refrigeration/freezer unit the entire time, if space got tight, etc....)

 

Good luck!

 

GC

Thank you for your response. There is a team that will assist with finding solutions where possible. There are more 'stable' versions of the nutrition that don't need to be refrigerated but having those is dependent on the amount of nutrition that Tracy needs. At the moment these are not possible.

I was just curious whether others have been in a similar position.

Best regards

Ian

Talk directly with the medical department of the cruise line your thinking of. They would have to approve her coming on board . Their issue would probably be the diesaese not the food bags.

Thanks for your response. We will liaise with the cruise company. There shouldn't be an issue as the condition isn't contagious nor caused by any disease. It was actually caused by radiotherapy treatment that has killed the intestine.

Best regards

Ian

Not as much as a long shot as you may think as have often seen cruise passengers requiring the same method of nutrition. Most cruise line cabin refridgerators are bascially coolers. However you can contact the Special Needs Dept of the cruise line you've select and request a Medical Refridgerator be placed in your cabin. This is done free of charge. Addditionally assume you will be traveling to the ship with the packs in a cooler . The cooler could be your back up as you can request ice from the cabin attendent each morning and night.

 

Notice you've cruise RCCL in the past. If it's RCCL you're considering the contact information is :

Link for RCCL's on-line Special Needs Form https://secure.royalcaribbean.com/allaboutcruising/guestSpecialNeeds.do

Telephone contact information for RCCL's Special Needs dept in the UK +44 (0) 1932-834243

Many thanks, that is really helpful to know.

Best regards

Ian

Not familiar with the Privacy Laws in the UK and Europe. However in the USA you are not required to disclose the medical condition to the cruise line nor can the cruise line ask for that information. The OP does NOt have to speak directly to the medical department unless they elect to do this on their own. Additionally the medical dept does not have to approve the passenger prior to booking.

 

All cruise line contracts have a Fit-to-Travel Clause. Such a clause basically states that the passenger warrants that he and those traveling with him are fit for travel and that such travel will not endanger themselves or others. That if the passenger requires any assistance for personal needs that they travel with a companion or aid as the cruise line does not provide such services.

 

As long as the individual has been approved by their own doctor to travel than no other approval is necessary. Nor is anyone required to disclose their medical conditon. Additionally of the medical condition is contagous his or hers own doctor would not approval traveling.

If I'm not mistaken the same conditions apply in the UK. I would speak to the cruise line anyway just to make sure that they were aware of any possible 'strange' requests and that there was a back up plan incase of power failure etc.

Best regards

Ian

It has been several years, but when we traveled with TPN on DCL they stored it for us and we just had to pick it up at the main desk each day as needed so it was in their temperature controlled fridge. The very first time we cruised was actually with our home pharmacy in 2007, they had arranged a conference on DCL and there were at least 50-60 home TPNers cruising. Disney kept all of our TPN in individual boxes with our name and staterooms on the box, delivered our boxes to us each day by 4 pm so we could remove the supplies we needed, and picked them back up after dinner. So well organized, it was awesome!! That trip is what convinced us we could cruise with our special needs son, and travel wherever and whenever we wanted... ended up doing a 4 month cross country trip a few years later.

It has been several years, but when we traveled with TPN on DCL they stored it for us and we just had to pick it up at the main desk each day as needed so it was in their temperature controlled fridge. The very first time we cruised was actually with our home pharmacy in 2007, they had arranged a conference on DCL and there were at least 50-60 home TPNers cruising. Disney kept all of our TPN in individual boxes with our name and staterooms on the box, delivered our boxes to us each day by 4 pm so we could remove the supplies we needed, and picked them back up after dinner. So well organized, it was awesome!! That trip is what convinced us we could cruise with our special needs son, and travel wherever and whenever we wanted... ended up doing a 4 month cross country trip a few years later.

Thank you so much for this. It seems that at least some cruise lines have experience of TPN and very good procedures in place. Once everything has settled we will be getting back to cruising again.

Best regards

Ian.

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Glad to help. The biggest problem right now is that TPN is only stable for 7 days at a time (at least in the US per FDA regulations) whereas in the past it was stable for 2 weeks. We never had issues with it before (my son was on it for 19 years and is now strictly tube fed) so you will need to keep your cruising to shorter term ventures until that changes, or else arrange somehow for shipments to be delivered to the ship at various ports, not something I personally would be comfortable with. We are shipping his tube feeds ahead to our Alaska hotels before we leave so we know it is there and don’t have to haul it with us, but that is the most I would do. Welcome to the TPN world.. I am sorry you need to be here, but our saying is... fed is best, whether tube, IV, or by mouth. I have friends who go hang gliding and horseback riding while hooked up... enjoy the ride!!!

On 4/5/2018 at 6:20 PM, jaz33 said:

Hi, I suppose that this is a long shot but I am hoping that someone may have experience or knowledge of cruising with Home Parenteral Nutrition (HPN). This is nutrition that is provided in liquid form via a tube directly into a vein. It is provided to people who have acute or chronic intestinal failure and unable to absorb any nutrients from food or absorb fluids.

 

The reason I ask is that my fiancee, Tracy, has recently been diagnosed with chronic intestinal failure and needs HPN for 12 hours a day. We are experienced cruisers and the thought of not cruising again is not something that we want to have to consider.

 

We realise that even though Tracy would not be able to eat anything there wouldn't be any discounts available but the main issue would be the storage of the nutrition bags which are 2.5L each. The bags need to be kept in a fridge for sole use of the bags. She would use 1 bag each day therefore for a 14 night cruise there would be 15 bags. We would cruise from the UK so there would be no issue regarding flights etc.

 

As I said at the beginning, this is a long shot and just wondered if anyone had any experience of this as we really don't want to stop cruising. 😞

 

Many thanks for reading this.

 

Best regards

 

Ian

I know this is from several years ago and a lot has changed since then but can I ask if u managed to successfully complete a cruise while your fiancee was on TPN?

I have just posted a similar post to yours regarding my wife.

On 2/5/2023 at 2:09 PM, Trixie21 said:

I know this is from several years ago and a lot has changed since then but can I ask if u managed to successfully complete a cruise while your fiancee was on TPN?

I have just posted a similar post to yours regarding my wife.

Hi, I haven't logged into Cruise Critic for quite a while but I see you only posted this on Sunday.

Yes we have done 3 cruises so far with TPN.  There cruise lines (Celebrity and Royal Caribbean) have been helpful in sorting it out and also with any accommodations we needed on board.  Are you in the UK or elsewhere in the World?  In the UK the first step for us was to inform the Nutrition Team at the Hospital that we plan to go on a cruise with the dates and number of nights.  I then contacted the Pharmacy to inform them of the same.  Once the pharmacy had the information regarding the prescription I liaised with them right up to receiving the supplies.  

We have only cruised from Southampton as this was easier than having to deal with airlines.  There is a lot of information I can give you to be honest.  If you want to let me have your email I can let you know more, but don't be daunted by it.  Yes its a little more preparation and maybe a slight inconvenience on board but it is doable.

Take care

Ian

3 hours ago, jaz33 said:

Hi, I haven't logged into Cruise Critic for quite a while but I see you only posted this on Sunday.

 

Yes we have done 3 cruises so far with TPN.  There cruise lines (Celebrity and Royal Caribbean) have been helpful in sorting it out and also with any accommodations we needed on board.  Are you in the UK or elsewhere in the World?  In the UK the first step for us was to inform the Nutrition Team at the Hospital that we plan to go on a cruise with the dates and number of nights.  I then contacted the Pharmacy to inform them of the same.  Once the pharmacy had the information regarding the prescription I liaised with them right up to receiving the supplies.  

 

We have only cruised from Southampton as this was easier than having to deal with airlines.  There is a lot of information I can give you to be honest.  If you want to let me have your email I can let you know more, but don't be daunted by it.  Yes its a little more preparation and maybe a slight inconvenience on board but it is doable.

 

Take care

 

Ian

Hi

Thanks a lot for the reply.

Its great to find someone who has actually completed a few cruises coping with TPN.

My email is trevorlinton3@aol.com - any information you could send would be so useful.

We are actually from Northern Ireland so will have to negotiate a flight to Southampton as well!