I often find myself flicking longingly through the travel section of the Saturday paper, dreaming up possible trips to destinations as diverse as Alice Springs, Hobart and Istanbul. And so, in thinking about travel and this column I wrote to a group of friends who live with CF to ask how CF has impacted upon their travel. Here are just a few of their great stories…
‘On a trip to Europe I was asked by Customs whether I would prefer to be frisked or have (my son’s liquid) feeds opened to check them. I chose the frisking… however, I realised I should have let my husband take up this offer – next time!’
‘I remember holidaying with my parents in the days of chest percussion which my active 20- month-old hated. He screamed for the entire half an hour twice daily. We were in a block of units, I was sure someone was going to ring child protection!’
‘We nearly missed the plane to Hong Kong because they were searching through the box of feeds, meaning we had to run through the airport as they were announcing final boarding call. And that was after obtaining all the letters from the hospital detailing the feeds, the medications, etc…’
‘I remember one trip getting into Albury (without enzymes) on a long weekend and trying to find an open GP who would write us a script. We found one and he promptly grilled me for an hour on CF because he needed the info for the lectures that he did at the local uni — he didn’t have any of his own patients…’
‘Our nebuliser breaks down every time we go somewhere tropical; it broke on Hamilton Island and I had to get another pump shipped from the mainland. It also broke on Vanuatu so we went without for four days.’
I remember sitting on a plane with our young son (with CF) coughing loudly over the roar of the engine as it took off. I shook my head as I looked across at my husband and asked him what on earth we were thinking flying across the world, and wondering how we would get our son and our family home safe, sound and all-together.’
I love these stories. Yes, they’re about the hassles of CF. But they speak of words like resourceful, flexible, tough. They speak of people who are living their lives—the ‘full monty’ of life, not a limited version. People like us, people living with adversity, people trying to face CF’s challenges and get on with life, people trying not to be ruled by the condition.
It’s not that travel is the most important part of life, but it is a part of life that is important to many of us, containing precious moments with people we love, capturing rare experiences away from work and responsibility, whether we’re travelling 50km to camp at the beach or flying across three continents.
The people I asked about travel also answered a question which I didn’t ask: ‘Was it worth it?’ These were some of their answers:
‘I was always keen to seize the day so worked hard to take on the bigger holidays.’
‘I look back at our overseas holidays with great memories as do all our family…’!
‘I go crazy without a holiday to look forward to so I will continue to go away and play the role of crazy germ-hunting mum.’
‘You don’t avoid living your life, you plough on regardless, through all the chaos and fear and anxiety, and somehow, it all comes together….’
If you’re interested in the super-practical travel tips I received but couldn’t fit here, they are available on my blog: www.susanbiggar.com (under Health, 65 Roses column, Summer 2013).
Comments and tips for travel from other CF families:
Travelling with CF is clearly so much more complex, but so worthwhile. I think after years of having to frequently cancel planned family weekend outings due to our son’s poor health, his older two siblings could be forgiven for thinking we were never going to go anywhere! I remember on a couple of occasions sitting on a plane with our young son coughing loudly over the roar of the engine as it took off. As I noticed the passengers near him looking around to see if they could move seats, I shook my head as I looked across at my husband and asked him what on earth we were thinking flying across the world, and wondering how on earth we would get our son and our family home safe, sound and all together. Having said this I look back at our overseas holidays with great memories as do all our family and I am very happy he has never had to be admitted to a hospital overseas!
During his school years he has travelled with us to the USA a number of times, as well as Europe, various Pacific islands and we have gone on a couple of cruises. We take a huge suitcase with all his back-up meds, feeds and equipment and so far it has never gone missing and we come home with very little left over. I have never been one to travel light, and it probably works out well in this circumstance as we are prepared for most things, but he still manages to surprise us with new reactions to travel situations/CF exacerbations. I think you put it well in your recent article, Susan, about being prepared for anything and dealing with the uncertainty. As time has gone by and his disease has become more complex I have sometimes found it overwhelming to organise everything to pack for an overseas trip, but then I think I only have to pack it all he has to deal with it, and on a wing and a prayer we have gone off on our trips. Our son finds the flights tricky, but he is grateful and happy for the travel experiences he has had, as are we to have shared those experiences with him.
Trying to stick to the usual nebulisers, feeds, insulin times, etc. can be difficult. Work out in advance a schedule of the times during your flights/travel what medication will need to be given. Pack the drugs into envelopes with the times written on the outside and carry these in your hand luggage.
Nebulisers: Battery operated and international voltage are obviously available these days, and on planes, in airports. etc. you can attach a Pari filter and pad to stop the mist dispersing into the aircraft cabin or affecting/offending other passengers (and avoiding cabin rage).
Dehydration: we have found this to be a big problem, even for shortish flights when our son was young. A PEG makes it easier to overcome dehydration by running feeds, electrolyte replacement and water through, but if no PEG it may be a good idea to use gastrolyte products during long plane trips, especially if you or your child has nausea and therefore doesn’t drink enough. At least make sure you have gastrolyte with you and be aware of the signs of dehydration, e.g. nausea, stomach ache, etc. Carrying some salty snacks may also be helpful. Ordering a special diet in-flight meal for you/your child usually means they will receive their meal at the beginning of service, rather than at the end when the choice consists of one meal type that they/you don’t particularly like. Pre-ordering a special diet has to be done prior to flying.
Take everything with you, e.g. drugs, feeds (and equipment: pump, giving sets, extension sets, diabetes equipment and nebuliser equipment) and don’t plan to pick anything up when you are overseas.
Take a list of CF centres closest to where you will be spending time – just in case. Make multiple copies of your doctor’s letter listing the drugs you are taking and keep one copy in any luggage containing the medications and feeds.
If taking medications that require refrigeration: Store hand luggage drugs in an esky with dry ice packs if possible. On long-haul flights ask your flight attendant to store one of your ice packs in the freezer to keep it as cold as possible and then ask for it back just before landing.
Take as close to a week’s supply of drugs and a couple of days of feeds in your hand luggage. Pack the balance of the drugs and enteral feeds in your suitcase and seal up any drugs needing refrigeration in a foam esky with frozen packs. Also place a copy of the doctor’s letter in the case.
Take additional antibiotics and medications you will need in the event of a pulmonary exacerbation.
If possible, book accommodation with a fridge in the room and air-conditioning.
Talk to your doctor about taking Tamiflu with you, if you are travelling to a region where influenza virus is active.
Prior to flying you will need to apply to the airline for authority to take and use a nebuliser onboard.
If you have a very tight airport connection and you/your child is unwell, consider asking in advance for airport assistance to get from one flight to the next. This will usually involve someone leading you through the airport throng with a wheelchair and going to the front of the Customs queue. You/your child who might usually frown upon the use of a wheelchair may actually be very relieved after a long and exhausting flight.
Carrying drugs and nebulisers, I have a large makeup bag with lotions, potions and lots of tablets, etc. to combat every occasion so I do not have to visit the local doctor. You also have to make sure that you have a letter from the doctor for everything you are carrying if you go overseas. And travel insurance is fun.
Our eFlow breaks down every time we go somewhere tropical, it broke on Hamilton Island and I had to get another pump shipped from the mainland which was not a great pump but we were on TOBI at the time. Also broke on Vanuatu so we went without for four days.
Pools, pools and more pool issues – I always try to stay at a beach, as my daughter loves to swim and I hate thinking of the bugs in the pool.
When she was very little I had another small bag of germ-killing wipe to go over every inch of portacots, high chairs, car seats and other items you have to hire, but may not be convinced are clean.
Sterlising tends to go out the window when we re away. I take the Milton tablets, but it is not always easy to find a place to run a full sterilising process, so it is often a kettle of boiling water poured over the nebs.
For us, I love going away with a group, but our daughter hates doing nebs in front of the group, so we have to make up a lot of stories why she is hiding in the tent for a while.
At the end of the day, I go crazy if I do not have a holiday to look forward to, so I will continue to go away and just play the role of crazy germ-hunting mum.
Travel when our son was small was tricky in an ‘inexperienced parent way’: managing travel cots, high chairs, sufficient medications, etc. However, I was always keen to seize the day so worked hard to take on the bigger holidays. His health was pretty stable through primary school which made it easier.
Thinking back, it was probably more day trips that I avoided – long days in the car made physio a chore, especially when everyone was tired.
I remember (many years ago) reading an article in Sixty-five roses by Charlotte Rosby about travel. Charlotte wrote words to the effect that you may not be able to overcome every hurdle but you can often detour. I took this to heart which is why I heavily encouraged (mother-speak for made) my son write of his travels.
Sleeping over at a friend’s place – the bag of clothes (of course) but also pump, nebuliser mask, normal saline, medications, enzymes, tablets, ventoline – and sleepover-related things like popcorn and chocolates.
And of course, my massive mother-anxiety – when she was older, would she do her physio, take her tablets, what if something happened and she got sick through the night. And when she was younger, the lists! Long checklists, extensively compiled and checked off – and always doubting myself, what if I had forgotten something, what if she was going to suffer due to her mother failing to do/remember something?
Yes – we have been there – but, as you know, you don’t avoid living your life, you plough on regardless, through all the chaos and fear and anxiety, and somehow, it all comes together…
So, I would say, no it doesn’t actually stop you! But my daughter screwed up her face, and said, ‘Yeah, well it doesn’t stop ME …. but it does slow you down.’