CF travel tips from abroad - CF Buzz

By Dani McClellan

Danni McClellan

So many amazing memories come to mind when I think of the word “travel”. I’m sure many would agree that travelling and exploring the world is one of the great joys in life.

When I sat down to write this article I counted the number of countries I have visited – 30 in total.

For many of us, the idea of travelling with CF can be daunting, but with a little forward-planning and preparation you will be sure to get the most out of your travel experience.

Here are my top tips for a smooth and fabulous trip.



Apply to as many insurance companies as you can to cover you for CF, and submit all your applications on the same day. This means that if you don’t get accepted to one company, it won’t affect the likelihood of securing other insurance. In the past I have received travel insurance that covers CF through Insureandgo, Covermore and QBE. It’s important to read the fine print very carefully, as most insurance companies offer cover for “pre-existing conditions” that doesn’t actually include CF.

When travelling to the US, insurance is a must. Hospital admissions without CF related health insurance can end up costing you hundreds of thousands of dollars. On my recent trip to the US I managed to get covered by Insureandgo. It came at a cost – $1300 for three weeks. Thankfully I didn’t need to use it but the peace of mind it gave me was worth the expense. I was covered under the condition that I was taking eight or fewer medications. Unfortunately, it appears near impossible to get insurance for the US if you are taking more than eight medications.

Some people try to curtail their treatment regime before going on a trip. In my experience, it’s best to talk to your doctor about this at least two or three months before you plan to leave. I recently trialed going off Pulmozyme in preparation for travelling, but after a few weeks my lung function dropped and it became clear that I needed to stay on it. Give yourself enough time for your health to bounce back if you and your doctor are thinking of changing your treatment regime. You want to be as healthy as possible before you leave.


Travelling with medications

I find it’s best to travel with your medication in your hand luggage. I always make sure I have an up-to-date travel letter, documenting all the medications I am taking, as well as any equipment i.e. nebulisers, syringes, needles.

The letter has all the contact details of my treating team in case of hospitalisation. I’ve also heard that it’s best to keep all medications in their packaging, clearly marked with your name. I have never had a problem with getting medications through security check points, but it’s good to be prepared to explain what you’re carrying (particularly when carrying liquids) and have your travel letter handy.

When travelling with medications that require refrigeration such as Pulmozyme, I recommend using a medical grade ice pack. When going on an extra-long flight I would also suggest asking the flight attendant if they could refrigerate your medication for you, and put the ice pack in a freezer.


Emergency planning

Have a chat to your doctor about taking some “just in case” medications with you.

In 2011, I travelled to Europe for seven weeks and after my third week I became very chesty and started coughing up the nasty stuff. Luckily I had packed some Ciproxicin and Prednisone. They were an absolute godsend.

If you do become unwell, it’s important to hunker down for a few days, do lots of extra nebulisers and chest clearance and enlist your friends to give you a good chest beating. I’ve done this a few times on my travels and it really helped. On various occasions I have gone into hospital for a pre-travel admission to ensure I was as healthy as possible before a holiday.


Planning your travel itinerary

Slow and steady wins the race when it comes to travelling with a chronic condition. It’s important to know your limits and plan your trip according to what history tells you about your physical capabilities.

When I was younger and my health a bit more robust, I enjoyed tours because you get to see a lot of places in a short space of time. These days I’m much better off staying in the same place for a solid block of time, say five to seven nights. It gives you a chance to unload, settle in, and have the luxury of getting to know a new city or town. It also means that if you can take blocks of time out of your day to rest and do extra treatments without feeling like you’re going to miss out on seeing everything.

Travelling by its nature is exhausting. If you can limit the amount of time you have to spend lugging a heavy backpack or suitcase to and from airports and bus stations, your body will thank you for it.

It’s also important that you’re family back home has your itinerary and that you have a quick way of contacting important people, should you have any health concerns. If things don’t go according to plan try to remain calm, stay in the moment, contact the right people and do not let the problem overwhelm you. There’s always a solution and you don’t need to search for it alone.


Getting through a long flight

I’ve started to become a little more wary of the risk of picking up germs airplane.

On my 2011 trip to Europe, I arrived in London feeling fine, but when I woke up after my first sleep my right gland was the size of a golf ball. I usually take Fess and some Betadine gargle on the plane so that I can flush out any bugs that might be floating around. I also take a face mask with me to put on when I’m sleeping. I usually take my battery powered nebuliser (e-flow rapid or aerobe) and do a Ventolin on the plane.

There are various schools of thought around whether you should ask permission from the airline to do this prior to the day of your flight. I have always just snuck up the back of the plane while everyone is sleeping and asked one of the flight attendants whether they mind. I have never had a problem doing this.

One thing to keep in mind is that the oxygen content in the air is slightly reduced when on an airplane. It’s a good idea to talk to your doctor about the likely effect of this on your body. It is possible to access oxygen on your flight, with a letter and prescription from your specialist.

One of the greatest things about travelling is that you never know what’s around the corner. It’s one of the few times in life when you can be completely spontaneous and do things you never imagined. The unpredictability is exhilarating! But health problems are not.

Being prepared and sticking to your treatment regime will leave you feeling confident and ready for any adventures that travelling brings. So plan, prepare, listen to your body and have an incredible time!

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