Brenda Walker – 12 Years On

Published On: 15 December 2023Categories: Aortic Valve, Patient Stories, TAVI

In 2011, Brenda Walker was treated for severe aortic stenosis. Now, at nearly 90 years old, Brenda reflects on all that she has achieved since her life-saving treatment, and her work as an advocate for heart valve disease patents around the world.

12 years ago, we lived in Leicestershire and I was in the middle of studying for a PhD at Loughborough University that I had started in Dec 2009. I was then 75, very active and in good health apart from some asthma. During the spring and early summer of 2011, when I was travelling around giving papers at various universities in the UK and abroad, or else busily involved in research, I began to get breathless and my left ankle kept swelling. As time went on, I found that when walking, I had to keep stopping to gain my breath. Also, I avoided all hills and steps. For a while, I thought age must be catching up with me. Or perhaps it was my heart? After all, my father had died of heart failure! So, during September I made an appointment to visit a local doctor. I told him about my symptoms, but he didn’t use a stethoscope and stated I did not ‘present’ as someone with a heart problem.

Towards the end of the month, I saw a doctor usually based at Glenfield Heart Hospital in Leicestershire. After listening to my heart, he explained very carefully that I had aortic stenosis, (a narrowing of the aortic valve that pumps the blood round the body) which needed to be treated. I asked him how long I would have to live if I did nothing about it. His reply was ‘about two and a half years.’  Remember, I was in the middle of my doctorate and was determined that nothing should stop my studies. As I was now 77, I needed to get my energy back quickly. Luckily, as my symptoms were severe, I was classed as a high risk patient and so could have what was called TAVI, short for Transcatheter aortic valve implantation. The date was November 28th, 2011, the Consultant Cardiologist – Dr. Jon Kovak; now, Professor Kovak. Everything was clearly explained, the valve would be a Bovine one and I put my complete trust in the team. Having to sign a form to say you have been alerted to the dangers involved is a formality with any hospital operation, but I remember saying to Dr. Kovak, “I’ve had a good life and done so many things, that if this is the end, so be it.” But it wasn’t the end. Far from it! The procedure was very successful, proven by the fact that I am now nearly ninety, survived Covid, and have recovered well from being hospitalised with a serious bout of pneumonia last March. I now have other heart problems but my aortic prosthesis is still working extremely well.

My career has been divided between the arts and education.  I have 5 children, 10 grandchildren and since 2010, an additional four great grand-children whom, but for TAVI, I might never have seen. My doctorate, entitled ‘British Contemporary Publishing and the New Dynamics of Ageing’ was conferred in 2013 and we moved to Somerset that year. With my renewed creative energy, in our first year I accepted the invitation to create and produce a Christmas play for a small group in the village.  The unusual staging of ‘Christmas at the Manor’ led to me writing an article for the Amateur Stage magazine entitled Transforming the Space.  I also got involved with a workshop entitled ‘The Power of Poetry’ for a Somerset Adult Learning Centre and in 2015, my work there was acknowledged with a presentation of a Lifelong Learning Award in Adult Learners’ Week recognising ‘Outstanding Individuals with Inspirational Learning Journeys’. I was also able to do some private coaching to help children with difficulties.

The years 2016-2019 opened new doors for me. Little did I know then, that I would actually meet Alain Cribier, the Frenchman who invented the procedure described above, and that having TAVI would eventually lead to many new and exciting travels. In accepting a request to be a Patient Advocate for the Heart Valve Voice Charity (Dr. Kovak recommended me!),  I found myself in May 2018 in Nyon, near Geneva with Wil Woan and another Patient Ambassador. There, I met other Charity Directors from Various European countries and was able to join in their discussions on plans for what was then European Heart Valve Awareness Day and came to be International Heart Valve Disease Awareness Week, marked by charities across the globe.  At a later event in Copenhagen a video was taken of the whole proceedings that involved two other patient representatives besides me. During the event, to my great surprise Alain Cribier, sent me a live personal video message from France.  Later that year, I was invited to a Roundtable discussion on ‘Structural Heart Disease and Ageing’ at the European Parliament in Brussels, in order to spread awareness of aortic valve disease!

Also during this period, in August 2018, I attended a Patient Engagement Day at the University of Cambridge’s Engineering Department when they were discussing that in partnership with Queen Elizabeth Hospital, Birmingham, they were designing a smart stethoscope, hoping to increase the accuracy of using auscultation to detect valvular heart disease. On September 8th 2018, I attended the ‘European Heart Valve Disease Awareness Day’ held at the ExCel Exhibition Centre in London where I again met up with Dr. Jan Kovak and was approached for interviews by MedTech Europe, The Guardian newspaper, and others.

I was also present at this venue a year later for Heart Valve Voice’s 5th Birthday Anniversary that took place during an Exhibition on Heart Valves and other medical equipment. During the October of 2018, Heart Valve Voice organised various photographers to link up with a particular patient to reveal their positive post-operative activities. The photographs were then exhibited and the winners chosen in their presence at Port Cullis House, London. My photographer, Patrick Dixon, won one of the prizes and the B.B.C. Devon followed this up in a Radio programme. On another occasion in December 2018, I joined Wil Woan, from HeartValveVoice, again at the London Parliament, Port Cullis House for the Medical Technical Groups discussion where I spoke on ‘Ration Watch’ (Relating in the NHS).  Then in March 2019, I attended another HVV Patient Engagement Day this time on Valvular Heart Disease, held at Birmingham University. Then there was Covid! So I didn’t travel to London again until April 2023; this time to speak at an all Party Parliamentary group on ‘The inequity of access to aortic stenosis treatment in women compared to men in the UK’.  I dislike using ZOOM, but follow Global Heart Hub, Heart Valve Voice, Canada, and study the heart via YouTube lectures with Ninja Nerd. Try it!

From 2020 to the present I acquired quite a different interest – Neuroscience. In my curiosity to understand and self-study the brain, I joined the British Neuroscience Association as an associate member and this led to:  A YouTube interview video ‘Positive Ageing, a PhD at 79, and keeping brain cells active…’; An Interview for the BNA’s magazine; A request in March 2020 to review a book ‘Mind in Motion. How Action Shapes Thoughts’, that was also printed; A special guest appearance at their 2020 ZOOM Christmas Symposium on ‘Ageing’;  A request for more reviews, which I was delighted to do: ‘A Million Things to Ask a Neuroscientist’, ‘The Entangled Brain’, ‘Neuroenology and Neurogastronomy’, have all been printed this month in their NEWS section, while ‘Neuroscience for Coaches’ and ‘Ways of Attending’ are to be published in December.  At the moment the next book for review, ‘Neuroscience for Dummies’ is in progress.

The BNA’s next Christmas Symposium is on December 11th this year. I have my train ticket and have booked Travel Assist, as well as a taxi to the local station.  Heart failure, due to Left ventricle systolic dysfunction (with an ejection fraction of under 35%), is well under control, my aortic valve still works and I’m all ready to set off  –  on my next great adventure!                                                                          

AFTERWORD: I got to the station at 6.30am only to find, without warning by text or email, that the through train to Paddington had been cancelled due to staff shortages. So I got a taxi home. Ah well! Perhaps next year ????

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