What its like living with Heart Disease

In this very personal account Kerrie from Gold Hearted Club shares what it’s like to live with congenital heart disease and the challenges she faces on a daily basis, from the psychological and emotional impacts, to the physical impacts including the scars she carries.

‘Born in 1982, I entered the world with congenital heart disease, specifically a narrowed and bicuspid aorta. Over the years, I underwent three planned open-heart surgeries to address my failing heart. Unfortunately, almost three years ago, I contracted sepsis from a heart infection, leading to additional surgery, a 20-day coma, and a three-month recovery period in the hospital.

Living with heart failure is not a choice; it's a challenging reality that no one would willingly choose for themselves or their loved ones. The constant uncertainty about my fate consumes every waking moment, making it nearly impossible to function.

My daily existence involves coping with constant pain, low energy levels, and PTSD resulting from medical trauma. Juggling regular check-ups with the pacing team, cardiac consultants, kidney clinic, orthotics, physio, and counselling sessions has become a full-time job just to ensure I receive the necessary care.

I share my journey openly, hoping that my experience with congenital heart disease will help others facing similar challenges. For a long time, I kept my heart condition hidden, only discussing it when absolutely necessary. However, after undergoing seven open-heart surgeries, I have nowhere left to hide, and there's no reason to conceal the reality that has shaped me into the woman I am today. I take pride in being a survivor and feel fortunate to still be here.

Acknowledging that I am on borrowed time, I don't waste a single moment. I pursue the things I've always wanted to accomplish, express the thoughts I need to share, and spend time with those who matter most to me.

I've grown stronger and braver, embracing all that life has to offer. Life can change in a heartbeat, and I wish to share the perspective I've gained, as it is both a beautiful gift and a significant challenge.

To raise awareness of heart disease and support research, I actively fundraise for the British Heart Foundation through various projects and collaborations such as my jewellery collection with Emma at Narratorium. My hope is that their scientists will one day find a cure for heart disease, sparing individuals from the pain and suffering I've endured.'

Kerrie x
Gold Hearted Club