Parenteral Nutrition on tour

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Why it is worth travelling on nutrition?

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For many people on parenteral nutrition, travelling is a real challenge which is difficult to face. Yet, if you follow appropriate rules and plan your trip carefully, a long stay away from home can be feasible. On the one hand, the opportunity to experience something resembling a normal life can give you a lot of satisfaction and, -on the other hand, can satisfy the need to rest and detach from your everyday routine.
Marek Lichota, a Polish patient living with short bowel syndrome learned over the years how to handle his disease and the associated changes in his life. For all of you, who also want to travel and enjoy life, find here some useful tips by Marek, and learn from his experiences.

Where should you begin with planning your trip?

Plan your trip/holidays

Destination

You should choose countries or places of with high hygienic standards and definitely try to avoid those without access to running water and sanitation facilities, which can significantly contribute to the increased risk of catheter related bloodstream infection (CRBSI).

If possible, you should not choose places where the temperature is too high or too low, as this will expose your body to extreme climate conditions. Additionally, hot climate and high humidity may result in greater fluid intake needs, due to sweating.

It is also good to know before you leave whether there is a Parenteral Nutrition Centre in a given country or near your destination, which will make you feel safer in case of any complications.

Type of accommodation

The availability of sanitary facilities in the room should always play a decisive role while choosing a type of accommodation. This will enable safe connecting and disconnecting of nutritional formulas and proper care of the catheter in accordance with recommendations. Additionally, if your nutritional formulas must be stored at a refrigerated temperature, you need to make sure that there is a refrigerator in the room (not a mini-bar!), or whether it is possible to store the bags in another place with an appropriate temperature. While planning, you should investigate as many details as possible, which may prove to be crucial for ensuring the safety of your nutritional formula supply and your good mood (i.e. cleanliness in the hotel, access to an elevator, parking, food quality).

Length of stay

The length of your stay depends on the number of nutritional formulas and dry equipment which you will need during your stay. This directly affects the size of additional baggage that you will have to take with you. If you use compounding bags, you should take the bags’ expiration period into account, which is relatively short. If you wish to stay for an extended period, you should consider using multi-chamber bags. You should always have a sufficient reserve of the necessary equipment in the event of unexpected circumstances.

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Travel companion

If you do not plan to travel with your family, you should try to organize your journey together with your friends and acquaintances, if possible, so that they may help you in the event of unforeseen circumstances. If you are travelling alone, you should always inform your relatives of your plans and where you will be staying.

Consult your doctor

You should consult your doctor about your travel plans and inform them of your planned location and duration of stay. The specialist will advise you whether your current state of health is adequate for the planned trip. It is a good idea to ask about the centre or specialist closest to your destination, to know where to turn and ask for help if necessary.

You should remember to ask your doctor to sign/write an appropriate medical certificate which will include information about your type of nutritional therapy, its importance in maintaining vital functions and the medical equipment that you will need during your stay (please find attached a sample of such a certificate).

How do you transport nutritional formulas?

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It is advisable to transport your nutritional formulas in consultation with the nutritional centre. There are different reimbursement systems and a range of services covering delivery of your nutritional formulas in various countries. It is a good idea to ask your nutrition centre if it is possible to deliver nutritional formulas directly to the place you intend to stay.

If this is not possible, all or part of your equipment (especially the dry component) can be sent by courier service at your own expense. This will avoid you needing extra baggage, especially when you travel around the country and do not have your own means of transport.

How do you provide appropriate conditions during transport?

The manner and form of transport depends on which nutritional formulas you receive. Both in the case of compounding and multi-chamber bags, you can use tested solutions enabling you to transport your bags even on long journeys.

In the case of compounding bags, you must be sure to maintain a temperature of 2-8°C throughout the entire journey, from leaving home/nutrition center until you reach your destination. It is advisable to have some time reserves in case of unforeseen circumstances. Special insulated shipping systems are available on the market. They are used for transporting medical products and maintaining a specified temperature for 24-72 hrs. (i.e. http://www.laminarmedica.com/).
These boxes have different sizes and capacities, so it is a good idea to choose a box that will hold a desired number of bags of a specified capacity. In addition, these boxes are packed in cardboard, which will protect them from being opened by standers. Your contact information should be attached prominently to the packaging along with a notice stating that it may only be opened in your presence. In addition, it is advisable to apply the labels “Handle with care” and “Fragile.”
There are no such temperature restrictions in the case of multi-chamber bags. Keep this medicine out of sight. Do not store above 25°C. Keep the bags in the outer carton in order to protect them from light and risk of squashing. They must be transported in a dry and shaded place, avoiding extreme temperatures.
Pack all of the elements of your equipment needed for nutritional therapy according to the list of medical supplies you have prepared. You should always remember to take a 2-day supply of your equipment in case of mistakes, damage or other unexpected situations.

What mode of transportation should you choose?

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The decision of what mode of transportation is most convenient is up to you. There are some pros and cons to your choices, but also obvious limitations of each method of travel.

Air travel

Pros

The fastest way to travel, especially over long distances
Enables us to reach almost every place in the world within 48 hrs.
If you need special assistance, there is a range of services to help you at the airport and on board.

Cons

Limited checked baggage
You need to inform the airline about your excess baggage in advance
It is not possible to make a stop in case you feel unwell
You need to plan extra time for check-in to follow all non-standard procedures

Before your journey, remember to prepare :

Medical certificate –essential during all stages of your trip
Visit or call the airline’s customer service in advance to inform them about your special requirements and excess baggage.

There are different regulations and policies concerning medical equipment. The airlines are not obliged to take extra baggage free of charge. Nevertheless, it is a common situation to allow PN patients to carry medical luggage without additional cost. Our aim is to emphasize the importance of the products which you need to take with you.

Politely ask customer service for permission to take on extra luggage free of charge. You can use information from your medical certificate and stress that PN and your medical equipment is essential in order to sustain your vital functions
Ensure that the customer service representative adds the appropriate information to your flight record
If there is such an option, you should ask for a medical baggage waiver letter (attached). It will include the item description, weight and dimensions of each box.
It is not a general rule, but even low-fare airlines allow people to take excess medical luggage (attached file).
Always remember to write down the name of the person with whom you speak.

Medical supplies

Pack all of your medical supplies tightly and carefully; try to fill up free space with bubble wrap
Inform ground staff that your luggage must be handled with proper care
Put “Fragile & Handle with care” labels on the boxes
Keep one or two days’ worth of supplies and medicines with you on the plane. This gives you a safety margin if your supplies are delayed.
In consultation with your hospital or nutrition centre, ensure that your nutritional formulas and medical equipment won’t be affected by X-ray radiation at the airport. Potential for dangerous radiation exposure from backscatter machines is low enough that it doesn't pose a significant risk, but it is worth asking in advance.

If you are a frequent flyer, FREMEC makes your journeys easier. The Frequent Traveller's Medical Card (FREMEC) was developed for frequent flyers with disabilities. The card contains all the important information related to your care. The card may be issued by any airline which is a member of the International Air Transport Association (IATA). The card’s validity is based on your medical history.

Travelling by Car

Pros

You can pack all your nutrition equipment at the starting point when you leave and it will arrive at your final destination without extra effort or needing to be re-packed.
You are able to control when and for how long you wish to make a stop.
You can use your own car during your stay at your final destination.

Cons

You must be focused on the road at all times.
Traveling over long distances can be tiring and dehydrating.
Depending on the distance, the journey might take longer compared to an airplane.
you must maintain proper temperature of the TPN bags during this period of time.

Before your journey, remember to prepare :

If there is a need for an overnight stay, choose accommodations in advance. Ask if there is a fridge in the room. Do not forget to put ice packs in the freezer.
Plan how you will administer your PN if necessary.
Pack all necessary items for one procedure in one place, to avoid unnecessary unpacking.
A portable fridge or cooler will be necessary to maintain the proper temperature of TPN bags during your journey.
A medical certificate as well as a disabled parking card are essential.

Travelling by Bus/Train

Pros

You are not responsible for driving, which allows you to do something else or take time to relax.
Toilets are available in the majority of trains / long distance buses.
More cost-effective if you travel alone.

Cons

You have to carry on medical and non-medical luggage to/from the station.
Travelling over long distances might can be tiring and dehydrating.

Before your journey, remember to prepare :

Check baggage limits.
Inform the bus or train company about your needs and extra luggage in advance.
Make sure that there is a toilet on board.
Keep an emergency kit and medical information with you.

Emergency plan

You must always remember that first step that you or anyone around you should take in an emergency situation is to fasten the clamp of the catheter and switch off the pump or to stop the gravity supply set. This will help you to avoid many complications and prevent the uncontrolled supply of formula.
Prepare a list of phone numbers and contacts for people who may help you in such a situation.
You should know what type of insertion/venous access you have as well as be able to tell the date of its placement.
You should plan where to go to if you do not have an access to electricity. Hospitals are usually equipped with power generators in case of such a situation; you should find other places with emergency power supplies.

It is advisable to prepare a travel emergency kit and have it with you whenever possible. It may include:

An additional clamp to lock the catheter
Syringe with a stopper to flush the catheter
Alcohol swabs
Gel to disinfect hands
Sterile gloves
Sterile dressings
Tape and compress to fasten the catheter tip

Checklists

List of things to do before you leave

During the planning stages, you should always prepare a list of things to remember and tasks that you have to do before you leave.

List for download

Medical Checklist

Due to the varying frequency of TPN administration, you should count the PN bags, you need to infuse during your journey = BA ( PN Bags amount).

List for download

Passports

Medical Passport for Enteral Nutrition

This patient information for enteral nutrition shows important details about the type of nutritional therapy, why it is indispensable and how it sustains the vital functions and what is needed for your holiday trip.

Click for download

Medical Passport for Parenteral Nutrition

This patient information for parenteral nutrition shows important details about the type of nutritional therapy, why it is indispensable and how it sustains the vital functions and what is needed for your holiday trip.

Click for download