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Home parenteral nutrition (HPN)
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.
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:
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.
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 temperate climate without high humidity
... adequate hygiene conditions.
... access to an Home Parenteral Nutrition center.
... accommodation with running water.
... access to a refrigerator with constant temperature.
... lots of fun and relaxation!
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.
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.
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.
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.
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.”
“By no means rush around trying to manage everything at once,” suggests Rhona. “Instead, handle one thing after the other – calmly and focused.”