It’s been 27 years since Vicki Macdonald was diagnosed with PAH, and as she prepares to celebrate her 40th birthday, she looks back on her journey.

Story shared in 2024

“Approaching a milestone birthday is a good time to reflect and as my 40th birthday looms, a part of me is dreading entering a new decade, but another part of me is feeling extremely grateful for getting to where I am today.

I was diagnosed with Idiopathic pulmonary arterial hypertension two days after my 13th birthday, back in 1997.

After over three years of medical investigations following a series of blackouts, it was a relief to finally get some answers.

PH wasn’t very well known back then and when I was diagnosed the outlook was bleak. My parents were told by the doctors I probably wouldn’t live to see my 21st birthday – a prognosis that thankfully my parents only told me about after I turned 21.

My parents shouldered most of the burden of my condition. They wanted me to know it was to be taken seriously, but they didn’t want me to know how serious it was. My mum wanted me to put my focus into school, which is what I did, making sure that I kept up with classwork around all my medical appointments.

I’ve never wanted PH to define me, and ever since I was young, I was desperate to keep up with what my friends were doing – whether that be going to university, partying or travelling.

I remember years of having dreadful side effects to medication, and at the end of a night out my friends would sit with me while I had my feet in a freezing cold bath to bring down the swelling after dancing all night.

My mum used to keep a damp tea towel in the freezer to put on my swollen red legs after I’d been on my feet all day at my weekend job. I look back at these memories fondly, thinking of the people who enabled me to life my life to the absolute fullest.

As part of my university course, I completed a one-year work placement in London. Living in the city expanded my horizons and with money finally in my bank account, I went backpacking with friends to South East Asia for six weeks. My mum was nervous about me being so far away for so long, especially considering this was in 2006, when you had to go to an internet café to send an email back home. But I was determined to go, and this trip would become the start of my love affair with travel.

After I finished university, I moved to London permanently where I started a job as a Management Consultant and was flat sharing with a friend. This was a huge period of change for me, as I also transitioned to a new PH hospital and they wanted to change my medication.

After being on the same medication for ten years, my side effects had grown worse as time had gone on. I was now working full time and commuting on the tube, my days were long, and I was keen to find a treatment that suited my new lifestyle.

It took time, but it’s important to work with your medical team to keep pushing for a solution that works for you. It’s important to know what you can tolerate, but also, you need to be able to live your life – so a balance must be struck.  

It was in London 16 years ago that I met my now husband. We’ve been married for 11 years, and I cannot imagine my life without him by my side.  

I don’t remember having the conversation with him about my health condition, but knowing me, I probably dropped it in casually and moved the topic onto something else.

Even now I don’t like anyone coming with me to my hospital appointments, because it’s a vulnerable part of me that I don’t like people seeing.

Maybe that’s why I ran into trouble with my condition six years ago. I was going through a stressful time at work, working in the head office of a high street retailer in a senior finance position, and I stupidly ran up the escalator at an underground station to make the next train. I found myself collapsing at the ticket barrier.

After it happened, I was so upset and angry. I’d spent too many years putting pressure on myself, and I couldn’t remember a time where I’d prioritised my health. Looking back, it was the wake up call I needed.

I quit my job immediately and took some time off work to focus on my own physical and mental wellbeing. It was a scary time. I wasn’t sure if my condition was worsening, and questions would whirl around my head. Would I ever be able to work again? How would I pay the mortgage? Would I be able to travel? Even now I get anxious at tube stations and on the tube, as it brings back these memories.  

Travelling has been a passion of mine since I went backpacking in my early twenties, and since then I’ve travelled to almost 40 countries.

My husband and I took three months off work in our mid-thirties to travel around Australia and South East Asia and we had the time of our lives. Every year I plan my leave days from work around my travel bucket list – which is harder since we got a dog, because I never want to leave her. I look forward to the days where dogs can travel with you on the plane!

Looking back, I don’t think there is anything I would change other than putting my health first earlier in my life, rather than waiting for health episodes to happen.

Sometimes I feel sad that having children hasn’t been an option for me, which a lot of other people with PH will sympathise with. But there are other incredible life experiences out there that can bring you joy each day.”