Carolyn Wheatley, from the charity PINNT (supporting people at home with parenteral and enteral nutrition), charts the ups and downs of long-haul travel when you depend on home artificial feeding.
I felt so organised – yet so unprepared – for my journey to New York.
Organised in terms of meticulous planning, flight, connecting flight, hotels, medical supplies (fluids and ancillaries), communicating with my homecare company and nutrition team, medical letters, excess baggage arrangements – the list was endless.
But unprepared in terms of packing personal luggage. Come on, a girl needs good co-ordination and a selection of shoes. You have to be prepared for all eventualities!
Why New York? Well, I was fortunate to be attending a patient conference in Saratoga Springs, New York state. I am not a first time attendee. This is actually my third trip to the ‘Big Apple’ and I am in fact a seasoned conference traveller in the USA. It’s where I saw my first ambulatory parenteral infusion pump many years ago. I had ‘pump envy’, or should I say ‘freedom and lifestyle choice envy’.
It’s a long story but thanks to visiting this same conference many years ago I, along with a dear friend Dawn, returned to the UK and started to campaign for freedom and lifestyle choices by encouraging the introduction of ambulatory pumps into the UK.
But as I settled into my seat prior to take off the usual discussion took place with the air hostess about not being able to keep my rucksack with me during take-off. After explaining that I was connected to it (on long flights I always keep hydrated by infusing saline) she agreed it was okay to keep it with me. Presumably because she realised I couldn’t be safely stowed in the overhead locker along with the rucksack! Of course, I had made pre-flight arrangements. But as many people in my position will know, these aren’t always filtered down to the crew.
I’m fed via a central venous catheter every night with a three litre bag of parenteral nutrition. I may be gutless and in need of artificial nutrition but I do try and make the most of the investment so many people have made in me in terms of giving me back my life.
That said, taking your own ‘food’ on holiday isn’t everyone’s idea of fun. But for me it’s essential. I am not a fussy eater, simply unable to eat sufficient to sustain my life. I’m not complaining – no menus to drool over, no calorie counting; that’s been done for me, a twelve hour infusion of parenteral nutrition every night keeps me going. The menu, if you like, is pre-set.
It’s a bit of a nuisance at times and I have to admit it would be easy to skip a night. Yet the consequences wouldn’t upset anyone but me. Why would I risk making myself ill for the sake of a ten minute set up process? Home parenteral nutrition equals life for me and that’s motivation enough on those nights when I could easily cut corners.
The first part of my trip this time was to a small town outside New York to represent PINNT at a conference. And if I’m honest, I was feeling rather proud. Travelling with HPN for eight days is no mean feat. Lots of excess baggage and lots of bag counting to ensure all are present and correct, especially when catching a connecting flight. It’s anything but relaxing. There are lots of ‘what ifs’, the main one being what if something gets lost or broken in transit. That’s why it’s so important to have a ‘what if’ list and be prepared for problems. There are factors you can control but there are many that are also unforeseeable. The crucial thing is to have a back-up plan for how the disappearance of this very special baggage could be resolved in a timely and appropriate fashion. Oh and did I mention I was travelling with a colleague who has enteral tube feeding? So in essence it was potentially double trouble if something went wrong.
We finally arrived at the conference hotel and with little rest it was straight into the conference the next day. First on the list was a workshop by the Oley Foundation Ambassadors, a USA organisation that represents those needing home intravenous and tube feeding. As the UK Ambassador it’s a great opportunity to be updated with Oley business, then brainstorm with fellow ambassadors on how to fulfil our roles. As I am based in the UK my role is different but it’s wonderful when I can help someone when they worry about travelling to the UK. There are always laughs along the way as we all network to support patients.
The next two days were a mixture of plenary sessions and workshops. Again, great to find out what’s new, different or how to showcase UK processes and procedures. Mingling with fellow home artificial nutrition people always raises the question of travel, given that we’ve come all the way from the UK. We met a friend there from Czech Republic who had travelled with her parenteral nutrition too so we were all quizzed as to how we did it. It’s always a healthy debate and highlights the difference in cold chain transportation, multi-chamber bags and stability data for packaging, along with appropriates storage when in a hotel or holiday accommodation.
I should be able to accept the problems we face when storing supplies on the move. But I can’t. Most of the HPN patients I meet are happy to use ice from the ice machines at the hotel to keep their PN cold. I still can’t get my head round that because, here in the UK, we are taught very differently.
After a fabulously interactive educational conference we had time to stop off in New York City itself. Leaving the tranquil surroundings of Saratoga Springs and arriving in Times Square was part two of our educational trip. Similar routine; lots of baggage which was slightly depleted due to usage but sill more than your average traveller, sorting out fridges and working out how much and when to fit in essential feeds!
But there was no time to worry as we set out into the evening to absorb the electrifying atmosphere. Bright lights and crowded pavements. Enticing restaurants and bars at every turn, not so attractive when you are limited to what you can take in orally. Still, absorbing the atmosphere was good enough for us. Being in town on 4th July was also a great buzz with a splendid firework display.
Leaving aside all the excitement there is a serious side to travelling with artificial nutrition. I’ve often wondered whether, when a traveller dependent on artificial feeding asks for medical consent to travel, does the person in charge understand the consequence of their response? I firmly believe anyone electing to travel with artificial nutrition needs to assume responsibility for their decision.
For all those asking ‘Can I go on holiday?’ it might be better to start with where and when? It’s not just about being fit to fly. It’s also about being responsible for the preparation and planning.
PINNT often receive calls from people who say they didn’t appreciate all that was involved in travelling. I advocate choice; choice in being able to make decisions about your own life, or that of your child’s. But it needs to be an informed decision. PINNT produce Holiday Guidelines and Talking Points Information sheets that certainly aid the process of travel.
Reflecting on my trip to New York, I am always grateful that I managed to enjoy another wonderful experience. I’m not sure about you but while away I always say ‘where next?’
Well, for me, where next is Australia.
That will be another great adventure, so the meticulous planning has already started. The airline isn’t being as accommodating as I’d like in terms of excess baggage and that’s an obstacle to overcome. And as this trip involves a wider team of people on both sides of the world, communication is key.
But as long as I have the ability to travel and I can obtain appropriate travel insurance I will keep asking that question – ‘where next?’
By Carolyn Wheatley