Home parenteral nutrition (HPN)
Traveling with parenteral nutrition
Until a few years ago, people being fed through parenteral nutrition, traveling was impossible and even after that meant a great challenge for quite some time. It’s no surprise that many affected are still scared to be away from their homes. It isn’t seldom that patients are fed parenterally for 30 years or longer and thereby never leave their home. Often, there is a lack of support and encouragement – and, not the least, a lack of practical experience.
Rachel Neal from England
Once I finally hear the waves, feel the wind and the sun, I feel healthy. After all the planning and preparation, I am unbelievably thankful.
Planning your trip is key
More and more people who are dependent on parenteral nutrition are daring to meet the challenges coming along with traveling. Santra, Rhona, Rachel, Marek, Ratislav and Artur talk about the kinds of fears and obstacles they have overcome, experiences they have made, and tips they give others for their journeys.
Regardless of where their travels take them, how far they travel, and whether they are gone for three or 30 days – all HPN globetrotters agree on one thing: thorough planning is key.
Rhona from England doesn’t spare any effort to visit the places she is longing for time and again. She admits that travel preparations take a great deal of energy:
“It is hard work and all kinds of organization is necessary to travel with HPN. But regardless: nothing is insurmountable. Besides, I know that brand new – and mostly wonderful – experiences are waiting for me.”
In her opinion, it is very important to get into contact with the HPN provider: “The advice and support that I receive are of inestimable value.” Furthermore, she finds it extremely helpful to talk about the entire trip from A to Z with a person of trust and at the same time consider even the smallest of details.
A good plan is half the journey
Parenteral nutrition radically changes your life – you might even wonder whether travelling will be a thing of the past. It doesn’t have to be! Your head may be swimming with questions about planning and logistical concerns, but don’t let that stop you – every question has an answer.
Whether for long-distance, day or weekend trips, make sure to clarify all questions in advance.
A backpack against travel nerves
Your backpack might not be the flying carpet but it’s the next best thing because it makes traveling with HPN possible in the first place. To give you wings and not weigh you down, it should be light weight, made of innovative materials and have an intelligently designed interior.
- Make sure you’ve got your emergency kit, your medical certificate and a spare battery for your pump.
- Make sure that your backpack is clean and tidy – it’s the best wy to protect against infection and potentially stressful situations.
- Be sure that the tube won’t easily bend or tangle during storage
- Check that the pump and the infusion work perfectly and that the HPN nutrition bag is properly filled.
Efforts that are definitely worth it
No doubt that traveling - whether by car, airplane or ferry - means also hassles and efforts. But there is a further phenomenon that all HPN travelers mention: the help and support they experience in every corner. And not just from medical professionals or service personnel. Whether it is the extra suitcase that can be checked in without additional costs, the hotel personnel who store the food already shipped before the guest arrives, or the host who antiseptically cleans the kitchen so that food can be prepared.
"For me, traveling means no longer being controlled by the circumstances surrounding my disease, but being able to live my life."
Santra Lacy from Finland
At the same time Santra confirms: "Of course, there are always moments where you have to deal with fear. For me, for example, it’s a nail-bite every time my bags with HPN disappear on the conveyor belt in the direction of the plane. After we arrive, I wait nervously for this small box whose contents keep me alive, and then I am incredibly relieved once it finally shows up."
Also Rastislav from Slovakia is familiar with dicey situations. Once, he just couldn’t find his disinfection spray and was already prepared to find a pharmacist, when he eventually could retrieve the spray in his backpack.
Rastislav Chrenko from Slovakia
"HPN keeps me alive. But it also gives me the opportunity to meet people and to get to know other countries. This is wonderful because it gives me so much energy and joy."
Artur from Poland reports that he became nervous when his return flight from Portugal to Warsaw was suddenly cancelled and he wasn’t sure whether his supply of food would suffice until he got home. It did.
"For too long I believed that I couldn’t travel anymore. But then I dared to do it – and it was the best decision I have ever made."
Artur Kamiński from Poland
Marek, who travels with his family and by no means wants to miss these experiences, is also familiar with such situations. He knows all too well that the “path to freedom”, as he calls it, is neither risk-free nor effortless. “But it’s one thing for me: indispensable. Because when we take this path, we are rewarded incredibly.”
Marek's checklist of things to do before you leave
Marek Lichota from Poland
"The vacations with my family are infinitely precious moments. I hope that they remain present in my children’s memories for some time."
If things do end up becoming tricky...
“By no means rush around trying to manage everything at once,” suggests Rhona. “Instead, handle one thing after the other – calmly and focused.”