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.

For 22 years I took Bisoprolol, of various increasing dosages. In December 2021 I was moved on to taking Sotalol, which I take 80mg twice a day.

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:

• Introduction Tweet
• What is CHD? (Mon 12pm)
• Adults with CHD (Mon 1pm)
• My CHD story (Mon 3pm)
• ICDs (Tues 11am)
• CHD and driving (Tues 4pm)
• Scars (Wed 10am)
• Prescription charges (Wed 3pm)