It was time for Tegan to stop dreaming and start doing and a lifelong illness wasn’t going to hold her back from seeing the wider world.
Since the age of five, Pulmonary Arterial Hypertension (PAH) has been a part of Tegan’s story. The now 30-year-old nurse was living in the south eastern suburbs of Melbourne with her mum and younger sisters when things changed drastically.
Initially, Tegan was diagnosed with epilepsy – suffering regular grand-mal seizures – but a persistent cough left doctors searching for answers. An x-ray confirmed something major was wrong.
“At the age of five, my heart was enormous, roughly the size of an adult male athlete. I was diagnosed with PAH. My mum was told, even with the medication available at the time, I would have five years to live.
“True to the doctor’s words, five years later and my symptoms began to worsen,” Tegan said.
The seizures continued and Tegan was placed on oxygen and confined to a wheelchair. For years, she trialled treatment after treatment while waiting for a transplant. Then, a miracle. A new medication became available. It was risky – requiring the insertion of a permanent line straight into the heart to deliver frequent medication – but the risk paid off.
“Now, despite being treated for such advanced disease, the treatments are working so well that my functional capacity is barely diminished. I’m rarely short of breath and from a day-to-day perspective, I can do all the things I wish, like work, exercise and holiday.”
As she celebrates 30 laps around the sun, Tegan reflects on gaining back her independence and opening the door to the wider world.
“While this illness is with me for life, I don’t let it stand in my way. I work as a nurse fulltime, exercise on a regular basis and thoroughly enjoy travelling. My life requires planning and preparation more so than most, but I make it work.
“It took me a few years to realise that I was well enough to travel, but once I realised this, at the age of 18, I started making the most of it.
“My first international holiday to Japan planted the seed and gave me the courage to continue. I was supported by my best friend and I enjoyed every moment of being out of my comfort zone.
“My greatest achievement to date is travelling solo for three months across Europe and Scandinavia during winter. It forced me to plan for every scenario and outcome and it was one of the best times of my life. I felt truly free!”
Now, the seasoned traveller wants to empower others to take the leap and get out of their comfort zone.
“The thought of a holiday with a chronic illness can be stressful, but with proper planning and strategies in place it is invaluable to your sense of self and so good for your mental health.
“Travel to me isn’t just about doing things abroad or going away somewhere, it’s about doing all the stuff you save for special occasions all the time!
“A trip to Japan during cherry blossom season and a few weeks in Ireland are on my bucket list. I’ll continue to save my pennies and hopefully soon I will get there.
“In the meantime, I’m excited about a trip to Melbourne to see Chicago later this year – I plan to make use of every weekend possible for mini getaways with my friends and any new experience I can get my hands on.”
What are your top tips for travelling with a lung disease?
- Get the OK. Talk to your doctor, nurse, pharmacist – and if
needed – get written permission from your healthcare team. The GP and nurses will be able to give you practical advice, spare equipment and write you letters.
- Scripts to-go. Make sure you get the scripts you need for extended travel! You will need written support or copies of your medication scripts to travel safely – your pharmacist can help you here.
- Taking flight. Call the airline and research the restrictions of the country you’re travelling to. Some airlines also require written evidence that you do or don’t need supplemental oxygen to fly, or they may need you to have an assessment with their medical team.
- Pack thoughtfully. Medication aside, make sure you have essentials within reach for a long-haul flight or drive. I always pack a small blanket, ear plugs, lip balm, eye mask, pillow, lollies, headphones, face wipes and water! Think about the things that will make you feel a bit more comfortable for the trip too, such as a heat pack.
- Know your limits. This can be hard for anyone to admit, but everyone has their limits. Travel can take it out of you – maybe you are only up to one activity each day. Travelling isn’t just about the must-see destination, it’s about how you feel and why you’re there.
- Plan ahead. Map your days out with all your ‘must dos’ before you arrive on holiday, then each night plan how to achieve the appropriate amount for the next day based on how you are feeling. This way you avoid missing the things you most want to do and can get the best out of your holiday.
This November, to mark Pulmonary Hypertension Awareness Month, Tegan will share her insights into travelling with a lung disease in our three-part Live Well, Breathe Better Pulmonary Hypertension Webinar Series.
To register for the free series, contact 1800 654 301.