My heart condition first became apparent at birth - my skin was blue, and the doctor heard a heart murmur. A few days later, I was transferred to Harefield Hospital where I had my first echocardiogram (of what would become at least hundreds to date) and was diagnosed with tetralogy of Fallot (TOF).

I was in and out of Harefield well into my first year of life. At 10 weeks I had a procedure to support the blood flow through my heart. This was to allow me to grow stronger for my big repair operation, which was done at 11 months.

Leading up to my repair, I would have the so-called ‘tet-spells’ where I would cry and turn very blue. Furthermore, I had bouts of asthma and croup. These produced a lot of anxiety for those around me, who would call ambulances to take me to A&E (both the ambulance and A&E staff became very familiar with me!). After my repair, there were still occasional hiccups, but these did stop eventually.

I don’t remember much about my earliest care, but I do remember the familiarity of the outpatients’ clinic at Harefield as I grew, seeing the friendly faces of Dianne (the receptionist), Clara and later Annabel (the nurse specialists) and my consultant Dr Franklin.

As the years went on, I had a dysfunctional and worsening pulmonary valve. This valve normally directs blood from the right pumping chamber to the lungs, without allowing it to leak back. However, mine had a leak which placed a strain on the right side of my heart.

When I was 10, Mr Uemera attempted to do an open-heart operation to replace my pulmonary valve. However, I had scar tissue in my chest (an unfortunate by-product of my repair operation) which would cause heavy bleeding if cut through. This was deemed too high risk. Therefore, at age 14, Dr Rigby and Dr Uebing performed a pulmonary valve replacement through the artery in my leg in the cath lab. They even met me in advance of the procedure to answer my questions; it must have been about an hour of their time, so I’m grateful they took this out for me.

Since this procedure, I have an annual echocardiogram and ECG at Harefield, and perhaps a treadmill test and MRI every few years. Congenital heart disease by nature can come with complications and I know more things may crop up. But right now, my heart is in the best shape it can be.

I’ve always been told that I don’t know what it feels like to have a normal heart, because I’ve never had one! So, I probably have many more limitations due to my heart than I notice. Although I run a lot, I am probably more limited and slightly slower compared to an equivalent person, but before my valve went in, I couldn’t even run for 30 seconds, so I’m not complaining!

I started running barely 10 to 15 minutes a year ago and now run 5km or 10km quite regularly. It comes much easier with time. In terms of medical advice, I have been told that there are no limitations (apart from contact sport) so long as I am comfortable.

Patients that want to undertake exercise would be very wise in emailing their nurse specialist to ask what their limitations are. Even patients with the same diagnosis can have very different hearts, so this advice may be quite bespoke. If you can exercise, my personal advice would be to exert yourself modestly and follow a routine: it’s better to start small and build up than to become exhausted, hurt yourself and never exercise again!

When I saw what was going on around me during the Covid-19 pandemic I wanted to help in some way. I signed up for the national volunteering scheme, but nothing was asked of me through this. I had been running now for about a year, and I thought I may as well use it as a vehicle to raise some money. I ran 60k over a month and raised money for the Royal Brompton and Harefield Hospitals Charity’s emergency Covid-19 appeal.

I feel incredibly lucky and grateful to have been, and still be, under the best care. And though I now live in the North East, I have chosen to stay with Royal Brompton and Harefield. To the staff who’ve cared for me over the years, I want to say an immeasurable thank you!

I have a very happy and productive life which I wouldn’t have otherwise. You’ve always had a lot of time for me when I’ve needed help or had questions. I don’t think I would have gone into medicine without my personal experience sparking that interest, but now have a long career ahead in something I love, and hopefully, I will help others.

Our Charity has recently embarked on an appeal to fundraise for the redevelopment of Cath Lab 5 at Harefield Hospital so we can help more people like Brandon. Find out more about our #LifeLineLab Appeal