I was first diagnosed by an astute Cardiologist initially with coronary microvascular disease. However, none of his colleagues agreed. I would go into hospital and have an intravenous infusion of nitrate abruptly stopped or reduced too quickly despite my protests which has had a negative impact on my mental well-being.
“My journey of coronary vasospastic angina started in 2012 when I was admitted to hospital by ambulance with a suspected heart attack.”
I was referred to a specialist who arranged for me to have an angiogram with acetylcholine. During my angiogram I experienced spontaneous and acetylcholine induced coronary vasospasms with my usual chest pain. My diagnosis was then refined to Coronary Vasospastic angina.
My Vasospastic angina has been very difficult to treat and I continue to live with daily episodes of angina which takes me into hospital from time to time. I also have neurological symptoms of an ice-pick headache, sensitivity to light and sound, and numbness to the left side of my face and hand during my angina episodes.
I have an Admission protocol to guide the staff how to care for me which was co-produced between my Cardiologist, Pain Management Team and myself.
I was retired early from my 30-year NHS career as a Midwife and laterally as Lactation Consultant in independent practice.
I am now involved as a patient representative or lay member of various professional and national UK organisations where I am advocate of meaningful patient involvement in all the stages of research studies and the development of patient services.
This includes The National Cardiac Audit Programme (NCAP) which is part of the National Institute of Cardiovascular Outcomes Research (NICOR) as well as The Cardiology Specialist Advisory Committee of the Royal College of Physicians (RCP), Research Champion for the National Institute of Healthcare Research (NIHR). I also sit on the ‘What Matters to Patients’ Committee of my local hospital which aims to improve the care of patients in one of the largest NHS Trusts in the UK.
I have volunteered for the British Heart Foundation (BHF) for many years. I helped to develop some of the information on their website about Microvascular and Vasospastic angina. I was one of the first Lay members of the BHF’s Clinical Studies Committee 2016-19 and I continue to be a Patient and Panel member of the BHF’s Big Beat Challenge.
I have given several presentations to Healthcare professionals about my experiences as a patient living with Vasospastic angina and the importance of patient involvement in research.
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