“WHY ME, LORD?”

Why me, Lord? Some Social Factors Associated with the Receipt of a Donor Heart In South Africa

A thesis submitted in partial fulfilment of the requirements for the degree of

Master of Arts of Rhodes University

by

RAYMOND HARTLE

January 2020

ABSTRACT

Since the first human-to-human heart transplant in the world was performed by Prof Chris Barnard in Cape Town in 1967, heart transplantation has become the gold standard to treat people suffering from end stage heart failure. This thesis explores heart recipients’ perceptions and experiences of their chronic heart illness before and after transplantation. It examines the medical experience in terms of the clinical diagnosis, the standard of communication about the illness and the proposed treatment, and the post-transplant regime. It also reflects how recipients make sense of heart disease and learn to live with a transplanted heart. The thesis also shows the extent to which the recipients’ culture and individual identity impact such complex medical issues as end stage heart failure and transplantation. Qualitative research was undertaken in private sector heart transplant programmes in South Africa. The study is underpinned by Mishel’s (1990) uncertainty theory as well as by social constructionism.

ACKNOWLEDGEMENTS

This thesis – and the research project which buttresses it – was never merely an academic construction. It is rooted in my life. Specifically, it reflects my experience of this second life, which I have been privileged to live since receiving a donor heart in a transplant operation on October 11, 2016.

When I was diagnosed with end-stage heart failure in August of that year and told that I would die unless I received a heart transplant urgently, I was working on a master’s degree in the School of Journalism and Media Studies at Rhodes University. It was one of my strange duties in that surreal season to write to my then thesis supervisor, Anthea Garman that, as I was dying, I was withdrawing from the programme immediately. After my transplant, as I recovered from illness, grew stronger, and considered what this experience might mean, it seemed the most natural thing to consider submitting the entire corpus of my story of heart disease, death and re-birth, to a rigorous sociological inquiry. With apologies to Socrates, the unexamined second life is not worth living. This thesis reflects part of that examination.

My undergraduate sojourn in the Rhodes sociology department almost 40 years ago was unexceptional, due entirely to my own efforts, or lack thereof. The department has been most welcoming of my late-life return to its precinct. I must especially mention head of department Professor Gilton Klerk, former masters programme co-ordinator Professor Monty Roodt and department administrator Ms Juanita Fuller, for their support and encouragement. Having Ms Janet Chisaka as my thesis supervisor has been one of the highlights of my master’s programme, although I may well have been responsible for many additional stresses and strains added to her lot. Thank you, Janet, for your willingness to share your knowledge, insight into and experience of the field; for the meticulous manner in which you reviewed every submission; for the easy engagement we enjoyed, which belied the seriousness with which you regarded this project and the commitment you expressed at every turn.

I am unimaginably grateful, and happy, to be alive. I could never have gotten here without the unwavering support of my loved ones – my spouse and partner, Belinda, our children Heath and Rebecca, their respective spouses Kelly and Marco, extended families and many friends from near and far. When one is really very ill, when the fight to live has almost left one, the importance of family to take up the fight is immeasurable. My family has been here, fighting for me at every step, for as long as I can remember. And they have been present through this journey of reflection and study.

Amid unimaginable grief, a family who did not know me and who remain unknown to me, decided to donate their loved one’s organs for transplantation. It was, at once, an expression of generosity, compassion and graciousness.

To the cardiothoracic surgeons, cardiologists, transplant unit co-ordinators and heart transplant recipients who have allowed me to reflect something of their work and journeys in this thesis, I am more grateful than you can ever imagine for your willingness to participate in this study. I would like to think this research contributes to the body of knowledge on heart disease and transplantation. Perhaps it fuels a longer, deeper investigation into the field.

After I had conceptualized the research, I began reaching out to heart transplant recipients, inviting them to participate in this study. In response to the question I had formulated in the research topic, “Why me, Lord?”, one of them replied: “Why me? Why not me?”

It is a riposte with which I concur. With all my heart.