My heart defect
I was born in 1977, with a defect that is similar to Tetralogy of Fallot. Although my treatment has been successful insofar as I live a 'normal' life; the effects of having open heart surgery have resulted in me very occasionally getting uncontrollable tachycardia, which is potentially life-threatening. To reduce the risk from this, in 2005 I was successfully fitted with an ICD. To date, it has only fired twice; in 2010 and 2014.
I am seen by the Grown-up Congenital Heart Disease team at the Barts Heart Centre in London. I have regular clinic and pacing appointments. My ICD is also monitored remotely through a device that is placed in my bedroom.
Full details of my defect and procedures
- Double outlet right ventricle, transposition of the aorta, pulmonary stenosis and doubly committed ventricular septal defect
- Classic left Blalock-Thomas-Taussig shunt - 1978
- Rastelli procedure with RV to PA homograft - 1982
- Conduit replacement with a 26mm pulmonary homograft - October 1995
- Self-limiting broad complex tachycardia with syncope - August 1999
- Sustained monomorphic VT on electrophysiology testing - March 2003
- Total obstruction of right femoral vein (venograft) - March 2003
- Implantation of single chamber Boston Scientific Incepta Implantable Cardioverter Defibrillator (ICD) - February 2005, replaced in 2013
My week as @NHS curator
In February 2020, I was the curator of the @NHS account, talking about living with a congenital heart defect. Unfortunately, due to unrelated illness, I wasn't able to complete the full week. However here are the main threads: