Life with a pacemaker: cardiac physiology student produces a guide for teenagers

A Swansea University student born with multiple heart problems has produced a booklet to help young people who are living with a pacemaker.

Having had heart failure at four years old, 20-year-old Katie Miller from Putney in south-west London, had a pacemaker inserted, and is now on her third pacemaker. A pacemaker is a small implanted device which helps to control abnormal heart rhythms.

Katie worked alongside her friend Hannah Phillips, who also has a pacemaker, and Evelina London Children's Hospital to produce the booklet, Wired Up.

Katie Miller (left) and Hannah Phillips with the Wired Up booklet.

The pair, who are both from London, wanted to provide easy to understand and relatable information for people aged 13-25 who need to have a pacemaker fitted and those with a pacemaker who are transitioning from children’s to adult’s services.

The free booklet covers a range of useful information, such as what to expect from the procedure, what they should take to hospital, and how they may feel after they have their pacemaker fitted. The booklet also includes a glossary of terms and space at the back for patients to make notes about their appointment.

Katie, a third year cardiac physiology student at Swansea University, was born with a congenital complete heart block (an abnormal heart rhythm cause by a delay to the electrical impulses that tell your heart to beat); patent ductus arteriosus (where blood mistakenly flows between two of the major arteries connected to the heart), and a problem with one of her heart valves.

Katie said: “With Wired Up, the aim is to help other young people living with similar heart conditions. Hopefully the booklet will provide relatable information for teenagers on a more personal level without all the boring medical jargon and clinical feel. As well as answering questions that young people may have, I hope it acts as a guide to support them on their journey.

“I knew from an early age that I wanted to work in the medical profession. Based on my own experience and meeting staff from different specialities, I decided to study cardiac physiology at Swansea University. It’s so interesting, and I know that I will be able to draw on my own personal experiences in order to help patients in future. I’ll graduate this summer, and after that I hope to pursue a career in paediatrics pacemaker programming”.

Professor Eric Rosenthal, consultant paediatric and adult congenital cardiologist at Evelina London, said: “Katie and Hannah should both feel extremely proud of what they have achieved by creating Wired Up. We know how crucial it is for young people to have accessible information about care, so we are very pleased that we have been able to support the publication of this important booklet. It will be a great resource for young patients living with pacemakers for a range of heart conditions.”

Wired Up will be offered to cardiology patients at Evelina London. The booklet is also available to download on Evelina London’s website.