“PH is a part of us, but it doesn’t have to be who we are”

“It was 2008 when I was diagnosed with Pulmonary Hypertension with Eisenmenger’s Syndrome at the Royal Brompton Hospital in London.

I had no idea what PH was and nor did my parents. Our lives had been turned completely upside down. I was 17 years old, and I could only have months to live.

Looking back, I don’t really remember that much, except for having to go for many tests, and staying in hospital for around six months.

Over time, my medication has had to change to keep up with the increase of my PH symptoms. As I’ve got older, I have noticed that my symptoms have become more noticeable, mainly shortness of breath.

Whenever I have been put on a new medication, I have cried each time because it reminds me that PH is progressive, and I will slowly get worse. However, I know these meds are there to help me and I am so fortunate to have the opportunity to change to new ones.

Oxygen therapy has become more prominent in my life now and I always feel self-conscious having to wear it in public.

As many readers will know, I have done many campaigns about living with an invisible illness. But despite the challenges  of living with PH as an invisible illness, I do still prefer it to be hidden. Of course, I am grateful to have oxygen to help me, but on a day where I feel I don’t need it 24/7, I will only use it when necessary.

Marking milestones and adapting through challenges

Since my diagnosis I am so lucky to have celebrated many key milestones and achievements.

When it comes to education, I have been to university twice. In 2012 I graduated with a degree in Music and four years later I graduated with a Master’s degree in Music Therapy.

In 2014, I met my husband Terry, and three years later we got married, surrounded by our family and closest friends. It was a magnificent day and despite being insured up to the eyeballs – in case anything happened with my PH – the day went perfectly.

Terry has embraced being with someone with PH, although at times it hasn’t been easy. I have been very poorly, but he continues to be my rock and support and as he says, ‘together we can do this!’

In the same year we got married we adopted a miniature poodle called Izzy and the three of us have gone on many adventures together.

In 2020, we all went through a pandemic. Being classed as vulnerable made it even scarier and I hated being away from my mum for so long, especially as she is on her own, but we kept in touch over FaceTime every day.

It was also the year my friends and I were all turning 30, but being mid-pandemic, all our big celebration parties were cancelled.

We were eventually allowed to form a ‘bubble’ and I celebrated with my mum, Terry and the dogs. Turning 30 was a massive milestone, especially after being told I may not reach my 18th birthday. I am always so grateful to reach and celebrate each birthday.

At diagnosis, I do remember feeling absolutely distraught at what was happening and asking the many questions of why me? Why now? Will I die? It was a very dark time, but I knew deep down that I was determined to keep going and to follow my dreams of becoming a professional musician. Music has helped me through the ups and downs; when times are difficult, I will play my piano and cello for hours on end to make myself feel better.

I unfortunately had to stop playing the trumpet when I was diagnosed, as I didn’t have the breath and it was causing further damage to my heart. However, before diagnosis, I had travelled the world performing with my trumpet and cello in various orchestras.

Celebrating my support crew

Over the last 15 years I have had so much support throughout the highs and lows of my PH journey, and to thank everyone I’d end up being like someone at the BAFTA awards reeling off my list!

On a serious note, the PH team at the Royal Brompton are fantastic and I can’t write an article without doing a special shout out to PH nurse specialist Carl, who’s been supporting me since the day I was diagnosed.

My parents have been my absolute rocks since my PH diagnosis. I know it really hurt my mum and dad when I got diagnosed, and they too have been experiencing PH from the beginning with me. But their support and love never wavered, and together we have got through some really tough times.

We sadly lost my dad to motor neurone disease in December 2014, which was really difficult for all of us, but I was so happy that despite living with PH, I had shown him how much I had achieved. Although he knew I would always succeed, no matter what life threw at me.

My all-in-one husband, best friend and carer, Terry, continues to be my number one supporter and I have amazing support from my closest friends too. I am also so fortunate to have met and become friends with many inspiring and fantastic PH’ers.

And finally to the PHA UK, a huge thank you to you too. We are so very lucky to have such an amazing charity.

Learning along the way

When I first got diagnosed, I started sharing my PH journey and writing about my experiences through a blog (www.phighter.co.uk).

It has been a wonderful outlet for me over the 15 years and I have gained over 50,000 readers from across the world. I have learned that there are people out there who support you and will have your back, even if they’re strangers living in another country.

However, I’ve also learned that taking time out from the online community is also necessary too. I feel that PH can consume our lives, but we mustn’t let it control us.

Since the pandemic, I’ve changed careers to focus on my music therapy work. I still work for myself, and I love being my own boss, choosing my own hours around my health needs.

Music has helped me and my PH so much, that I too, wanted to help others in need and show them how music can benefit them. Some people think it’s difficult for me working with children with life-limiting illnesses, but from my experiences of living with PH, I feel my connection with the clients is that much stronger. It is such a rewarding career and I’m so pleased to have finally found my vocation.

My hope will always be finding a cure for PH, but for now I am happy and count myself lucky. Right now, I don’t have any big goals, but I do hope to stay as healthy as I can so I can continue to go on many adventures with Terry and Izzy.

If I could go back in time to 2008, I would say to myself, ‘yes, it’s going to be difficult, but there will also be some amazing times too’. I’d say I’t’s going to be one hell of a ride, but there is always hope and there is always support. You may not feel it now, but things will be okay.’

When we are low, it sucks, and I have hit rock bottom. But you must remember your friends and family are your biggest supporters. Allow them in, and together you will get through it.

PH is a part of us, but it doesn’t have to be who we are. We can still live life to the full, despite having PH. Remember to always have hope.”