No cure, always hope
2018 marks a decade since Tess Jewson was diagnosed with PH and she’s more determined than ever to keep on living life to the full. In a special feature to mark her anniversary, here she looks back on her journey.
“It was January 2008 and after a fantastic family Christmas it was time for me to return to college. I was very excited to see my friends and get back to studying for my A-Levels, as I wanted to go to university to study music. We decided to go bowling one lunch break and on the walk back to class, I suddenly felt really ill. My chest was pounding, I had severe breathlessness and I fainted. I was rushed to my local hospital and then transferred to one in London.
I had already been a respiratory patient there for ten years and at every consultation I complained of suffering with severe breathlessness, but each time I was told my asthma was getting worse and a new inhaler was prescribed.
I cried and cried and felt my dreams were all shattered.
On this day, I was put into the intensive care unit and once stabilised, was moved to the respiratory ward. I had a right heart catheter, ECG, MRI scans, multiple blood tests and x-rays. We were told the hole in the heart I was born with hadn’t closed up and it had led to pulmonary hypertension with Eisenmenger’s syndrome. It was incurable. We were shocked, and not ready for this devastating news, as we had previously been told my hole had closed up. I was given a short prognosis and told they couldn’t close up the hole, as it would kill me instantly.
The thought I might to die, before I was even 18, was too much to bear. I felt like my world had come crashing down. I cried and cried and felt my dreams were all shattered.
My consultant then said my only cure was a double lung and heart transplant, but that I had many tablets to try before I needed to start worrying about that. I immediately started Sildenafil and soon noticed an improvement. My parents stayed in hotels near to the hospital throughout and family and friends visited over the months. I remember speaking to a lovely lady who was in the bed opposite me, and to cheer ourselves up we would score each male doctor or nurse out of ten!
Coming to terms with my diagnosis
None of my family and friends had heard of pulmonary hypertension, so we were given leaflets to explain it. We went on Google, which sent fear into us, but I became a member of the PHA UK who introduced me to the online support group where other people had PH too. It was a relief to speak to others with the same condition, knowing they understood what I was talking about. I had spoken to many for a few years, so when I attended my first PHA UK conference, it was wonderful meeting them in person. One friend I speak to a lot is Tina Pickering. We call ourselves ‘twinnies’ as we both have exactly the same PH, and also the same positive and determined outlook on life. As Tina says; ‘it lives with us, not the other way around!’
After my diagnosis, at my request my teachers compiled my coursework, so I could continue studies whilst in hospital and still take my exams when I was discharged in the May. I had to get used to the changes in my life – walking slower than everyone else, taking lifts instead of the stairs, and taking tablets three times a day. It was very frustrating making these changes, but I was still alive! I had my family, friends and my music and that’s what got me through. My continued studies paid off. I passed all my exams and my place at the University of Southampton was confirmed.
Attending university was scary, especially being recently diagnosed and three hours away from home. My mum couldn’t just pop down the road if I was poorly. However, being the positive and determined person I am, I grabbed university life by both hands and enjoyed every minute. I had to pace myself and sometimes I’d push the limits and go out partying until the early hours with my friends, but I always made sure I could rest all of the next day. Yes, I had my ups and downs, and my Sildenafil dosage was increased due to the stress of my studies, but for the majority of the course, I managed my PH well. I graduated with a music degree in 2012.
Afterwards, I moved back home to live with my parents and opened up my own music teaching business. It worked well as I could choose my own working hours and fit it around hospital appointments.
In December 2014, my Dad sadly passed away, which knocked us all. He was the rock of the family and kept us together throughout my diagnosis. He always remained positive that I would continue to do whatever I wanted despite PH.
Around the same time I met Terry, who is now my husband. I told Terry straight away about my PH, as even though it was invisible for me, he had to know the truth. Many have run for the hills, but he stayed!
Also in that year I stopped teaching and had a career change. I wanted to help others with disabilities whilst still using my musical talents, so I studied to become a music therapist. I graduated with a Masters in Music Therapy and I currently work work with children with severe learning disabilities, which I absolutely love. My relationship with Terry went from strength to strength and we got engaged in February 2016. We bought a house later that year and married on April 27th, 2017. We were fully insured in case of any complications caused by my PH, but it was all ok and we had a wonderful day. I was so excited that I could walk down the aisle without any disability aid and I was symptom-free for the whole day. We recently became a family when we bought our puppy, Izzy.
Looking back on the last ten years, I can’t believe how far I have come. I have not let PH stop me and I have achieved the goals I set before my diagnosis.
It hasn’t been easy. There are always struggles, thoughts of ‘why me?’, fears and tears. But there is also happiness. Throughout my journey I’ve had amazing support from family, friends and my specialist PH team. Some friendships have been lost, but not everyone will understand.
I love being involved in anything that raises awareness of PH and I will continue to tell my story to whoever listens. I don’t know what my future holds, but with the love and support of my friends and family, especially my husband and mum, I will always keep positive and hope for a cure. One thing is for sure – I will continue to live life to the full!”