This is a pretty personal subject matter for a blog post. Being ill lately has changed my outlook on life, the way I think and even kicked started some must needed changes in my life. I have a need to write about it…
I was born with a congenital heart disease. It’s called Transposition of the Great Arteries. This is a condition which where the two major vessels that carry blood away from the heart — the aorta and the pulmonary artery — are switched (transposed). I had the senning procedure which saved my life otherwise I wouldn’t be here writing this blog post.
Alot of people that were born around 1989 had either the Mustard and Senning repair. Both are very similar operations for TGA. In both, the surgeon creates a two-way baffle in the top part of the heart. This baffle serves as a bridge between the two sides of the heart. In a Senning procedure, the surgeon uses the patient’s own tissue to create the baffle. Both are called “atrial switch procedures” because there is a baffle through the heart’s top part, or atria, which allows the blood to reach the ventricles.
As a result, the heart needs to work harder to keep doing what it’s doing. It goes without saying that it comes packed with a range of symptoms and people can experience problems later in life such as Baffle leaks, rhythm issues and pump problems. At some point you are very likely to need surgery and the worst case outcome would be heart transplant.
Growing up, I looked like a normal healthy girl only I wasn’t.
Growing up, there were certainly changes and things I needed to do different to others my age. Like having to take have my mouth numbed when visiting the dentist and occasionally wearing a heart monitor to school for 24 hours while logging my daily activities. Having a regular flu jab on yearly basis and taking antibiotics at sign of a chest infection. A bonus was getting out of cross country in winter and watching everyone else get muddy.
I always tried to never let my condition from stopping me from enjoying my life the way I want to. I was often tired and for the most part I got tired too easily. Id often get blue lips and hands (something that still happens). I had no issues until I was 8 years old, in which had balloon dilation of pulmonary venous baffle in which was resolved by surgery.
I grew up having annual visits with a paediatric cardiologist at a specialist heart hospital. As a kid, I enjoyed these special heart checkups and I got time out of school (which was always a bonus) . I often asked to keep ECG stickers and watching my Echo although I could never make sense of it all. After all, how many kids got to see ultrasound pictures of their own heart? or have Stickers placed all over for an ECG?
As with heart surgery, I have a scar running across my chest area that shows even when I was wearing vline tops I never let it affect me and most of the time nobody notices it till I say. It never really or has bothered me. Ive been through so much that I couldn’t care less about a scar. I call it my battle scar and it symbolises I am a heart warrior.
Don’t get me wrong having heart defect isn’t always bad…
I’m talking about the little negative things that come with having a heart defect. Its never really held me back. I wasn’t always on the side line when it came to things like sports. At school I was on the netball and football teams. I have taken part in a number of charity events including the 9 mile walk for British Heart Foundation. I just take things at my own pace. Of course, I always wish I could run marathons and not have to go for regular check ups but that is life…
I have been rather lucky and clinically well throughout my life. I’ve always been aware of any issues that have risen such as the impairment of the systemic right ventricle with mild tricuspid regurgitation etc – things that are all to be expected with my heart defect.
It was only until recently I began to realise how serious my heart condition is and how much things can change without any notice.
Life ticks away and anything can happen at any stage. Life can change at any point but having a condition like this means your more at risk.
Growing up, I never really took much interest in my heart condition and often let my mam deal with it all including listening to the doctors or explaining to people what Transposition of the great arteries was. It is only till I hit adulthood I began to realise that my family arent always going to be there. It was time I dealt with things on my own…
I have had to research alot about my heart condition and I’ve asked alot of questions on my last few check-ups, some even silly. It was only until my consultant was explaining about it, I began to realise how scary it could be including having a heart transplant – something not every 28 year old wants to hear.
In May, Welcomed constant chest pain, shortness of breath, weakness, fatigue…
This is one of the reason I haven’t been posting blog and been silent on social media as I’ve been in and out of hospital. Nobody has given me a clear indication of what it could be but I have been rest assured from a cardiac point I remain OK. MRI and CAT scans, bloods, heart tapes for days and even an exercise stress test, you name it…
I have been told it could be various things from Pericarditis to pneumonia to viral infections and even asthma etc. I am still not 100% well despite various medication, and seem to get every infection going because my immune system is at an all time low but I will get back on track and be able to move forward.
Will always have some good days and some bad days. But who doesn’t anyway? Life is what you make of it with what you’ve got, good or bad.
One thing I learnt is that I have often took my health for granted. This recent health scare has massively changed outlook on life as well as made me want to change for the better if not for my health. I know a huge part that is having a strain on my heart and health is my weight.
I have always struggled with my weight and lately I have gained a few stone over a short period of time. This is of course having a HUGE impact on my health as well as strain on my heart. Its scary to think at present moment, If I needed a heart transplant I actually wouldn’t meet the criteria because of my weight.
Losing weight is mentally challenging especially when you’ve often used it as a comfort tool to cover your feelings. I have decided to set goals with challenges over the next coming months which I hope to blog about. I will shift the weight which will be one less worry.
Being born with a pre-existing condition means it’s staying with you till death do you part.
Surgery worked its magic on me and I was one of the lucky ones. I will never allow my condition to hold me back and from this moment forward, I’ll never stop counting my blessings and I’ll never ever stop championing the NHS for saving my life. This blog took alot to write because I am not very open about my heart condition and usually don’t bring it up until I need too.
I’d love to hear your stories and if you have been impacted by Coronary heart disease or any pre-existing condition. Please leave a comment below or you can email me at firstname.lastname@example.org