I was born with Tetralogy of Fallot. It meant that amongst other problems with my heart I had two holes in it, a missing pulmonary valve and narrowing of the pulmonary artery. When I was born I wasrushed to Birmingham Children’sHospital and had my first surgery to fix the holes in my heart when I was 3 days old. At 18 months I had my first open heart surgery, during which the surgeons ‘made’ me a new pulmonary valve.
I only became aware of my congenital heart diseaseas I grew older and learnt about it from my parents and my doctors. Also, like most people with a medical condition,I started to read about it andtalk with other children at the hospital with similar conditions.
In 2012,when my heart was really struggling,I hadopen heartsurgery again to replace my leaky pulmonary heart valve with one from a cow rather than one from a pig or a metal prosthetic valve. I will need further surgery in the future though.
Prior to my surgery in 2012 I was playing hockey, dancing, skiing, swimming and exercising. I also travelled extensively both on my own and with my family. I went to university and spent 5 months studying abroad in America at Elizabethtown College, in Pennsylvania. However, I was always very tired and did not have the stamina that my contemporaries had. My heart surgery was between my second and thirdyears at university, but I went straight back to complete my final year after the summer and gained a BA in illustration. It took me a while to recover,and I did facestruggles such as depression and PTSD. My lowest points have always been associated with my mental wellbeing;I struggled to control my anxiety immediately before and after my surgery and my biggest fear is that future surgery may cause my PTSD to return.
With the support of my family and friends I overcame most of my mental health struggles; I still have a few anxiety issues, but I am much healthier and stronger now.
I always enjoy spending time with my family, especially when we have an extended get-together.I also have good friends from university and when I studied abroad who always cheer me up if I am down. Social media and Facetime mean that it is very easy to talk in real time to people on the other side of the world. Like most people I have severalguilty pleasures and cake is probably the biggest, but a good Netflix binge is also high on the list. However, everything in moderation is a good rule to live by. I do really enjoy travelling whenever I can.I most recently visited Tel Aviv in Israel, which was both a pleasurable experience anda very big challenge. I also enjoy painting, drawing, photography and pilates.
I think it is good to encourage other young girls and women who may be going through a similar experience to me. I read stories by otherwomen from the Somerville Foundation whichhelped me, and therefore inspired me to talk more about my story. I would say it is important to always enjoy life and take every opportunity you get. I have learntthat you should not let CHD define you; itis apart of you but don’t let yourself be overcome by it. You have the scars as a reminder that you are a survivor and a fighter. Always take every opportunity and do not let anyone else tell you that you can’t do anything.
Heart disease both acquired and congenital is a killer. It can sometimes be hidden and not noticed, unless you get regular checks from a doctor and monitor your own health and what your body is telling you. I consider that as a patient who was born with congenital heart disease I am lucky,as I am monitored very frequently.
I feel that it is my duty to keep raising the awareness of heart disease, in all its forms, by talking about my personal experience and informing people of the signs, symptoms, causes, treatments and preventative measures that can be taken. Living with heart disease has taught me to enjoy life as much as I can and not to let it restrict my horizons. It has taught me to be thankful to the dedicated doctors and nurses who have kept me alive, and that the way to repay them is by making the most of myself.
Lucy Hill
