Thursday 30th July 2020
Livvy Gosney is currently waiting for surgery for bicuspid valve disease. This is her story about life before treatment.
I was diagnosed with heart valve disease in 2015. At the time, I thought I was diabetic, as I had gestational diabetes in 2012 and found myself feeling the same some three and a half years later. My Dr listened to my heart, heard a murmur and asked me to come back in 2 weeks.
When I went back, the murmur was still there, so I was referred for an echocardiogram at Salisbury Hospital. The result came back as Bicuspid Valve with a dilated aortic route.
When I knew the signs and symptoms, I discovered my tiredness was down to my BAV. All those years ago, when I was pregnant and felt so exhausted, it was my BAV, not my gestational diabetes. This tiredness is still my worst symptom, next to being breathless on exertion. Sometimes when I walk up steps, I can hardly breathe.
I now see my Cardiologist every six months, echocardiogram every six months and yearly CT with contrast. My dilated aortic route (aneurism) is at 4.4cm, and they operate at 5cm, so I know I'm getting closer to the day of my treatment.
Recently I was referred to Southampton for my open heart surgery. However, due to COVID-19, it is likely to be delayed, but I take comfort from knowing that I'm in the system, and my clinicians are looking after me. It's obviously a worry when your treatment plan isn't proceeding the way you like, but I just have to monitor my symptoms and react if anything changes. - and have faith in my clinical team.
I like to research and understand my situation. So I have investigated the types of valve and decided which one I want with my loved ones and my clinical team. As I do not want to be on blood thinners, I will go with a tissue valve.
I've thought a lot about how I will prepare personally for going into hospital and have decided to take a meditation approach as the time comes closer. I may stick my fingers in my ears when / if my surgeon tries to talk about what he plans to do (I am an avoider and would utterly panic if he said anything surgical). I know it's going to happen, so just get on with it, I don't need to know the ins and outs. I know some people will want to know everything, but not me!!
I've begun to prepare myself and my home for my recovery. I have a recliner chair at home and plan to sleep in it for a month before my operation so I can get used to it before I need it, I will also practise standing up without using my arms for leverage. I will also have to make plans for my daughter, who has Down's Syndrome and requires a lot of care. It worries me a lot, but I just have to make sure we're prepared for when the time comes.
Before I go in, I will make a list of all the things I think I will need to take to the hospital, like wireless headphones to listen to my meditation apps and music. If I feel anxiety when I'm waiting for my operation, I will do rhythmic breathing and meditation.
Operations are always scary, but the alternative is way worse, and I choose maybe six months of discomfort for a full and happy life spent with my beautiful family ?. Fingers crossed my husband will be able to come with me, and in just a few days I'll be back with my family at home.
My advice to anyone else awaiting treatment, or who has just been diagnosed, is to ask questions if you don't understand, join Facebook groups (you gain so much info that way), ask what your treatment pathway would look like, and estimated timelines. Feelings both good and bad are natural, so don't worry if you cry, or feel a bit "why me", or if you experience anxiety. They say the wait is the hardest part, and I feel that way at the moment because I am a "now" person, let's get this done so I can feel like a new shiny penny with a wicked scar to show off how brave I am!