Read on Twitter
hi. my name is anise and 18 years ago today i had my first open heart surgery. i was born with a rare, complex congenital heart condition called Tricuspid Atresia. this means that when i was born, my tricuspid valve didn’t form, meaning that i wasn’t getting enough oxygen.
when i was six weeks old i suddenly became too weak to feed, so my parents took me to hospital and found out that i had gone into congestive heart failure. this prompted my first surgery which was placing a band around the pulmonary artery to stop excessive blood flow to my lungs
several months later, i went back into hospital for the second surgery, the glenn shunt. the aim of this procedure is to redirect the flow of deoxygenated blood to the lungs by attaching the superior vena cava (upper body vein) directly to the pulmonary artery (lung artery)
my last operation was the fontan procedure, which i had just before christmas in 2007 (lucky me). the aim of this surgery is to separate the deoxygenated blood from the oxygenated blood. this surgery didn’t make my heart normal, but it allowed me to grow and do more exercise :)
here’s a page with more information :) https://www.lhm.org.uk/information/single-ventricle-heart-conditions-and-their-treatments/tricuspid-atresia/
growing up was quite difficult, i was always excluded from activities and felt like a burden on my friends because of my heart. many people made fun of me for not being able to join in with every game they played and people even told me i was lying about my heart for attention
making friends was difficult as it was difficult for young children to understand my condition, just like it was difficult for me to understand it. in primary school i was always picked last in pe & laughed at when i couldn’t keep up in the playground. i became so frustrated
with my heart that i just wished and wished and wished that i would wake up and it would be fixed. spoiler alert, that didn’t happen. as curious kids do, everyone would ask me questions and talk about my heart as if it was the only interesting thing about me.
just looking at me, you would assume i was a normal, healthy child because my illness is “invisible” and my scars are hidden. this made it difficult for teachers, friends and their parents to understand why i could do all the same things as the other kids
i have scars on my leg, chest and neck from surgery, when i was younger i thought they were cool and thought everybody had scars like mine, but as i grew up and started to realise that not everybody had them i became insecure about them and started to make sure they were hidden
so that nobody would ask any questions, but now i’m proud to show them. in high school, classmates began to understand my heart a bit more, teachers a bit less. i’d get told off countless times for being late, being tired, being too tired to do pe, forgetting homework etc.
children with half a heart have half the energy of a child with a healthy heart. to make this easier to understand LHM created the “spoon energy theory”. a child with a healthy heart starts the day with 20 spoons of energy, a child with half a heart starts with 10. every day-
-activities, such as walking up stairs, walking to school, getting dressed, take spoons of energy, whilst eating, napping let you regain spoons. this explains why by the time a child with half a heart gets to school, they might already be exhausted and find it difficult to focus
the past few years have been difficult mentally and physically. late last year my doctors told me my life expectancy, and told me that i am going to need a heart transplant in the future. no matter who you are, being told information like that is scary
knowing i have such a limited life, i find it difficult to form new long-term relationships/friendships. i often think about how i’m probably not going to outlive any of my friends and it scares me to the point that i isolate myself. this has also had a toll
on my mental health, i have bad anxiety about the future, i have serious depressive episodes due to struggling with my heart.. a survey shows that 70% of half a heart patients are living with mental anxiety due to their conditions
this brings me to now. i travel as much as i can, see as many artists as i can with a constant fear of what damage is doing to myself by pushing myself to do the things i want to. the last five years i have visited 2 of my bucket list locations; florida and iceland
at first the phrase “here for a good time not a long time” made me laugh, but now i kind of live by it. i know that i’m not gonna live a long fulfilled life like everyone else, so i just have to made-do with what i’ve got- and that means doing as much as i can every year
for me, nrs gigs are a safe space. they’re one of the only places where i can forget about the things i can’t do and just have a good time with my friends. i want to pack as many good experiences into my life as i can, so that my time here isn’t wasted, and these lads have given
me so many amazing memories the past year, i could never thank them enough for everything they’ve done for me 
i’ve also tagged some other people who have helped me a lot recently, whether it’s through their music or jsut being genuinely nice. sometimes being happy is draining and difficult but looking up to people like these makes it a little easier to see the good in bad situations
i want to raise awareness for single ventricle heart conditions as they are often overlooked. by sharing this thread i hope to inform more people about these conditions in the hopes that younger children won’t have to grow up feeling as misunderstood and excluded as i did.
Little Hearts Matter is the only charity in the UK dedicated to supporting and empowering anyone affected by the diagnosis of a single ventricle heart condition https://www.lhm.org.uk/about-us/
please read the article that i have linked below :)
“Pioneering generation of young people with ‘half a heart’ saved by surgical advances only to be let down by society”
https://www.lhm.org.uk/wp-content/uploads/2019/04/FINAL-LHM-press-release.pdf
“Pioneering generation of young people with ‘half a heart’ saved by surgical advances only to be let down by society”
https://www.lhm.org.uk/wp-content/uploads/2019/04/FINAL-LHM-press-release.pdf
key points from the survey;
it is more difficult for young people with a single ventricle heart to perform well at school due to their lack of energy. a greater understanding of our individual needs would help increase inclusion.
it is more difficult for young people with a single ventricle heart to perform well at school due to their lack of energy. a greater understanding of our individual needs would help increase inclusion.
36% have an educational deficit that requires extra support at school, but the current system makes it hard for them to obtain the statutory health care plan they are entitled to
70% suffer from anxiety. we are twice as likely to suffer from phobias, depression, night terrors, ADHD by the age of 10. some suffer PTSD yet our heart conditions make it more difficult to access mental health care due to a lack of understand of our individual needs/experiences
as adults we are NOT entitled to free prescriptions despite living with an incurable, life-limiting illness.
Many find it hard to form long term relationships as they know their single ventricle hearts will not last as long as a healthy heart, leaving us facing a transplant or premature death.
75% say they are “severely impacted” as their condition is invisible to others and is frequently overlooked, with some “not believed” about their illness.
if you have read all the way to the end then thank you so much, i hope this has informed you about single-ventricle heart conditions a little bit. please visit https://www.lhm.org.uk/ for more information 
