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Home parenteral nutrition (HPN)
Until a few years ago, for people being fed through parenteral nutrition, travelling posed a great challenge for quite some time. It’s no surprise that many affected are still anxious to be too far away from home. Often, there is a lack of support, encouragement and practical experience.
More and more people who are dependent on parenteral nutrition are daring to meet the challenges that come with travelling. 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 to see. She admits that travel preparations take a great deal of energy.
In her opinion, it is very important to get contact 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 she trusts and consider even the smallest of details.
Well prepared
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.
"For me, traveling means no longer being controlled by the circumstances surrounding my disease, but being able to live my life."
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.
"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 had been 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."
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.”
"The vacations with my family are infinitely precious moments. I hope that they remain present in my children’s memories for some time."
“By no means rush around trying to manage everything at once,” suggests Rhona. “Instead, handle one thing after the other – calmly and focused.”
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