Hey guys,
Today’s my CHD story
When I was born I had a condition called tetralogy or fallots (TOF), now before I really get into this I must emphasis every TOF is different. TOF is about the structure of the heart simply. I won’t go into the details but if you want to check it out in more detail I’d suggest looking here, https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/tetralogy-fallot it explains the abnormalities that can occur with TOF.
I was born in the mid 80s and at a time where CHD started to change more babies were surviving yay! After I was born in my local community hospital I was taken to the city for more specialist care.
My first operation was a BT shunt which left a scare from my right side right to the middle of my back. A BT shunt is surgery to increase blood on the right side of the heart to the heart.
After this I eventually went home, I went into heart failure on or around my 3rd birthday.
When I was 4 years and 9 months I was having open heart surgery, I was left with a large scare from just below my collarbone to above my belly button. And two drain scares either side of my scare. I unfortunately don’t know how long my surgery took exactly as my mum never told me before she died but I’m guessing I was down in surgery for a long time!
I’d now like to introduce you to my first hero Dr Brawn who completed my open heart surgery. He did a great job! I was awake and demanding to go to the toilet within 36 hours well as my nan told the story, typical me!
I had a second procedure a cardiac catheter in 1990. After that I had no further surgical interventions.
Dr Brawn stayed in my life until I left the children’s hospital when I was 16 years old! Boy did I cry that day. I took cards for my surgeon and my cardiologist both of whom I’d had in my life for my whole childhood. I remember writing those cards even now and how I thanked them and promised I’d make the most of life.
Those first 16 years of life with concern to my heart saw me have to many bugs, to much time of school! I dread to think of how many hospital days and E.C.Gs and echocardiogram’s I had! Having these particular tests are so normal to me I don’t really bat at the thought of them, although I do get nervous!
While at Birmingham children’s I met lots of kids just like me with heart problems, through young at heart and then teenage young at heart! Of course I’m still in touch with many and I’m so proud of them all, you know who you are.
Story .. a young vicky and her friends thoughts we’d play a little trick on the adults as we had gone to Weston for a break. We’d all gone off to explore and found blue slush puppies and I swear we all had the same idea, grinning! We took a drinks and then showed the adults our blue tongues, Ben writing it I’m laughing! In hindsight it wasn’t my greatest moment, we scared the adults a bit! Heart kids can go blue which shows an issue .. not my greatest moment but still kids eh!
I was transferred to adult care in Birmingham but well we didn’t get on and I wasn’t symptomatic and refused to believe I needed heart surgery so soon after being transferred so I stood my ground demanded a second opinion! They sent me to the Heart Hospital London.
The heart hospital became my home until 2015 when they moved to Barts, I followed them to barts!
At the heart hospital I found my perfect heart team and was settled for 15 years however then after years of being stable and happy with my treatment. First Fiona my guch nurse left and then my cardiologist professor John Deanfield left, I cried.
I’m 33 years old now and I’ve had even more E.c.gs and echos then most have had hot drinks! I’ve cried tears of stress as every appointment comes round with the worry will it be this time I need more surgery.
The worse though has been saying good bye to three men and a lady who really have supported me and advised me, encouraged me to live my life to the full and have many adventures. “Never let having TOF stop you from chasing your dreams Victoria” I was once told. I hope I’ve made them all proud and I will forever be greatful to both teams for treating me as a person and understanding me and my weird ways and needs. I mean prof even encouraged me to follow united, even though he was a Tottenham fan!
Today marks 2 years and 6 months since I’ve seen a cardiologist and I was meant to meet my new team today but due to the sickness bug hitting my brother I was unable to attend. It’ll likely be the end of this year or early 2019 now before I see London again or maybe I will never go back.
What ever happens I’m thankful to Birmingham children’s hospital, the heart hospital & St Barts London.
I’m great full that I was able to have two of the greats in cardiology to look after me, Dr Brawn has been honoured for his services to cardiology and Professor Deanfield is greatly respected amongst many and has won awards and both had done research papers.
I’ve been so eternally lucky to be treated by both of these amazing men. I’m eternally thankful to have had you all in my life.
Now on to the next chapter of my heart surgery ..
Vicky xx
