Cruising with TPN

[Trixie21]

Wondered if anyone has had any experience of cruising on P&O while on TPN (Total Parental Nutrition - being fed solely through an IV line ). Or would have any relevant knowledge /comments ?

Looks like my wife may have to be in this long term and she was not happy about giving up our cruising lol!

We haven't been on P&O yet but were thinking of booking and because of the range of cruises from Southampton it would be an even more attractive option to us now.

The bags of feed would need to be stored in an actual fridge somewhere - its 1 bag per day .

Any input would be greatly appreciated. 

[wowzz]

34 minutes ago, Trixie21 said:

Wondered if anyone has had any experience of cruising on P&O while on TPN (Total Parental Nutrition - being fed solely through an IV line ). Or would have any relevant knowledge /comments ?

Looks like my wife may have to be in this long term and she was not happy about giving up our cruising lol!

We haven't been on P&O yet but were thinking of booking and because of the range of cruises from Southampton it would be an even more attractive option to us now.

The bags of feed would need to be stored in an actual fridge somewhere - its 1 bag per day .

Any input would be greatly appreciated. 

Sorry, can't help about the practicalities, but my immediate thought would be about obtaining insurance cover for her. Have you found a company that will cover her for a cruise ?

[tring]

2 hours ago, Trixie21 said:

Wondered if anyone has had any experience of cruising on P&O while on TPN (Total Parental Nutrition - being fed solely through an IV line ). Or would have any relevant knowledge /comments ?

Looks like my wife may have to be in this long term and she was not happy about giving up our cruising lol!

We haven't been on P&O yet but were thinking of booking and because of the range of cruises from Southampton it would be an even more attractive option to us now.

The bags of feed would need to be stored in an actual fridge somewhere - its 1 bag per day .

Any input would be greatly appreciated. 

 

You really must contact P&O about this, though does sound like a potential problem to me. 

 

I would get the medical details in full, as well as any procedures which would need to be performed by medical staff on the ship.

 

You are obviously going through a very difficult time as it will affect both of your lives, so I realise there must be lots of things going around on your minds at present, though sadly you will probably have to wait a while to get her long term position sorted out.  I should think any medical condition would need to fully stabilised for a period of time before any answers could be gained from any holiday company, but your doctors should be best placed to give advice on how your lives may be affected after her position is clarified. 

 

Often there are charities for specific health conditions which help with advice regards problems encountered when suffering from that condition.  I am a member of the Dystonia Society as I have a mild form of dystonia.  They are very good and also have an online forum where people can help and support each other about practical issues occurring in their lives.  Perhaps your consultant could give you information of a similar organisation relevant to your wife.

 

I hope all works out well for you both,

 

Barbara.

 

 

 

 

 

Edited January 5, 2023 by tring

[scarlet ohara]

Not specifically about TPN, but nearly 30 years ago, my dad, who had renal failure and relied on peritoneal dialysis 4 times a day, achieved his wish to go on a cruise- on Canberra. It involved delivery of enough bags of fluid for 4 changes a day plus associated medical sundries. It was all arranged with the cruise line and sufficient bags were delivered straight to the ship. They didn’t need refrigeration. The room steward brought a box when required and all went well. 
 

I suggest you liaise ASAP with P&O medical department as I’m sure it should be possible as TPN at home must be much commoner than it used to be. Your local hospital specialists probably can help with arrangements too.

 

Insurance should be possible too though may require a specialised company.

 

I hope you can sort things out and can continue to enjoy holidays ( whether cruises or not). My dad had several holidays abroad, as well as the cruise, which involved delivery of supplies to his holiday accommodation and details of local medical facilities should they be required ( they weren’t!). If it was feasible in the early 90’s I would hope it would be feasible now

 

best wishes

[wowzz]

46 minutes ago, scarlet ohara said:

If it was feasible in the early 90’s I would hope it would be feasible now

I have a feeling that nowadays,  with greater legislation, more stringent insurance requirements, etc,it would be less feasible now than in the 90s.  

For the sake of the OP I hope I am wrong.

[Trixie21]

Thanks for all your replies. 

- I have not investigated insurance yet , but am aware that could be an issue as our insurance was already high due to my wife's existing condition , and that was before it took a turn for the worse.

-I intend to contact P&O to talk about the feasibility of this. It would have been great to find someone who had actually done it as there is no better advice than first hand. Is there a specific email address for their special needs department ?

-Before we would even attempt a cruise we intend to take a short holiday in the UK just to get a feel for what we need to think about etc.

- And yes there will need to be a period of stability regarding her health before any holidays are likely to occur. Its just important for her to have something to look forward to and to know that life isn't completely pointless any longer , which is why I am just checking out the feasibility of cruising at this point

- As we understand it she or I  can be trained to do all that is needed regarding hooking up and unhooking the feed bags so medical on the ship would not be needed other than to store the bags.

Lots to think about and thanks for the input so far!

[happy v]

39 minutes ago, Trixie21 said:

Thanks for all your replies. 

- I have not investigated insurance yet , but am aware that could be an issue as our insurance was already high due to my wife's existing condition , and that was before it took a turn for the worse.

-I intend to contact P&O to talk about the feasibility of this. It would have been great to find someone who had actually done it as there is no better advice than first hand. Is there a specific email address for their special needs department ?

-Before we would even attempt a cruise we intend to take a short holiday in the UK just to get a feel for what we need to think about etc.

- And yes there will need to be a period of stability regarding her health before any holidays are likely to occur. Its just important for her to have something to look forward to and to know that life isn't completely pointless any longer , which is why I am just checking out the feasibility of cruising at this point

- As we understand it she or I  can be trained to do all that is needed regarding hooking up and unhooking the feed bags so medical on the ship would not be needed other than to store the bags.

Lots to think about and thanks for the input so far!

I wish you all the luck in the world and hopefully you can find answers for your dilemma 

[scarlet ohara]

2 hours ago, Trixie21 said:

Thanks for all your replies. 

- I have not investigated insurance yet , but am aware that could be an issue as our insurance was already high due to my wife's existing condition , and that was before it took a turn for the worse.

-I intend to contact P&O to talk about the feasibility of this. It would have been great to find someone who had actually done it as there is no better advice than first hand. Is there a specific email address for their special needs department ?

-Before we would even attempt a cruise we intend to take a short holiday in the UK just to get a feel for what we need to think about etc.

- And yes there will need to be a period of stability regarding her health before any holidays are likely to occur. Its just important for her to have something to look forward to and to know that life isn't completely pointless any longer , which is why I am just checking out the feasibility of cruising at this point

- As we understand it she or I  can be trained to do all that is needed regarding hooking up and unhooking the feed bags so medical on the ship would not be needed other than to store the bags.

Lots to think about and thanks for the input so far!

Hi, I googled “Home TPN support” and it came up with various links to UK hospitals information leaflets for patients. One of which includes the following

 

What are the benefits?

The aim of HPN is to allow people with intestinal failure to go home and to live as normal a life as possible. Many people on HPN go out to work, look after a family, go on holiday and take part in sport and social activities like anyone else.

 

It might be worth speaking to your local department/ specialist nurse to see what they think, albeit it wouldn’t be feasible until your wife is stable. 
 

In my experience (retired GP), most of the specialities dealing with long term chronic illness are very keen for patients to live as normal a life as is possible.

 

best wishes