Hundreds of Interlaced Fingers
Author: Vanessa Grubb
This most moving book is as much a revealing view of the medical, ethical, and political dimensions of the management of kidney diseases, as it is a heart-warming love story between a couple whose destinies converged and revolved around a profoundly overlooked organ. On one hand, it is the moving fairy tale romance of a kidney doctor and a patient with end-stage renal failure. On the other hand, it is an overcoming-the-monster epic of the pair as they confront an unfair health care system which has stacked the odds heavily against Black people like them. It is however most of all an uplifting testimony of sacrifice – one that very few are called to make for a partner. With refreshing forthrightness, the author narrates her frustrating experience of facing up to a system of deep-rooted inequity and racial bias both in her personal and professional lives. But beyond just an autobiographical account, the author also had a higher objective of improving the public awareness of the kidney and its afflictions; in this regard, the book is also a masterclass in the physiology and pathologies of the kidney, and in the management of renal diseases. With a simple and easily accessible prose, the author succeeded in promoting kidney health, and in correcting widespread misconceptions about renal replacement therapies.
At the heart of this book is the mutual love that developed on the backdrop of a potentially fatal disease. The narrative revolved around the deep affection that blossomed after a chance meeting, the challenges that ill-health augured, and the almost ultimate sacrifice that symbolised true love. With eloquent prose permeated with poignancy, the author captured the mood of falling in love and ‘intertwining‘ with each other, becoming so strongly attached that one was driven to donate a life-saving organ to the other. The depth of the bond is symbolised by the little hesitation the author had in getting ‘involved with a man I knew had end-stage kidney disease‘. The intensity of her feelings was the reason she disregarded the advice of friends not to get involved with ‘a sick man‘, and it was also why she ‘believed at my core that giving Robert a kidney was the right thing to do and that everything would be alright‘. Aware of the challenges their unique relationship posed for both of them, and conscious of an element of naivety on her part, she approached the partnership with philosophical perceptiveness, knowing ‘not to waste time looking for perfection because we can see our own flaws clearly’. And almost as compelling as the depth of her feelings for Robert, was the strength of her resolve to redress the injustice that threatened his care; this was indeed the driver for her decision to become a nephrologist, and to focus her research on ‘what made people much more likely to get a kidney transplant than others’ so that she could find a way ‘to help other people like him’ (pages 23-31, 54-55 and 111-113).
The organ at the centre of this book, the kidney, symbolised all the connected themes the author explored – the personal, the medical, the academic, and the political. Although it is critical to life, the author deplored the fact that the kidney has been ‘pretty much glossed over‘ in society, and it does not have the ‘popular respect‘ it deserves. The author attributed the organ’s poor public esteem to earlier physicians who, by glorifying the diagnostic value of urine, and by portraying the kidneys as ‘mere producers of waste‘, subjected the organ to ‘ridicule and caricature‘ and knocked it off its ‘virtuous pedestal‘. In an attempt to rectify this uncomplimentary image of the kidney, the author painted a glowing portrait of an organ which ‘mesmerized‘ her by ‘the beauty in its design‘. She particularly conveyed a sense of the elegance and complexity of the glomerulus – the structural and functional unit of the kidney – when she metaphorically compared it to ‘a ball of tightly coiled yarn‘ which contains ‘strand-like interlaced fingers‘. She also brilliantly likened the podocytes which house the glomerulus to the array of fingers on the tentacles of an octopus that ‘clasped and touched every curve of the tuft at once’. In similar evocative prose, the author portrayed the functional beauty of the tubules that, together with the glomerulus, make up the nephron – a million of which are ‘packed into a bean-shaped sheath less than five inches long and weighing only about a third of a pound’ (pages 59-60, 24 and 128-130).
Just as fascinating as the structure of the kidney is the crucial life-maintaining function it subserves, and this was at the core of the book’s narrative. The author graphically depicted the phenomenal way in which normal kidneys filter out about 25 teaspoons of blood per minute, and how this declines with age at the rate of about one teaspoon every five years after the age of 40 years. The author also pointed out that, because the kidneys can compensate until their capacity falls below 12 teaspoons, or 60 milliliters, per minute, she compared them to a woman who ‘suffers in silence‘ and loses herself ‘because she is so focused on pleasing everyone else’. This theme of loss carries on inevitably to the depressing and heartbreaking theme of kidney failure in which the book explored such acquired causes as infections, cancer, kidney stones, lupus, high blood pressure, and diabetes – the latter two accounting for two thirds of all chronic kidney diseases. The author also discussed the inherited causes of kidney disease such as the apolipoprotein 1 gene mutation. Especially relevant to public health was the stress the book placed on the under-recognised risk of kidney damage from Chinese herbal medicines which contain aristolochic acid, and from acai berry juice – damage which can be as severe as that resulting from the use of non steroidal anti-inflammatory drugs like ibuprofen (pages 146-147 and 155-157).
The book’s historical narrative was dominated by accounts of the breakthroughs that enabled renal replacement therapy. Regarding dialysis for example, the author highlighted the influential contributions of pioneers such as Willem Kolff who invented the first artificial kidney and is considered to be the father of dialysis; Belding Scribner and Wayne Quinton who made long term haemodialysis possible when they developed the first working Teflon shunt; and James Cimino who introduced the long-lasting haemodialyis arteriovenous fistula. With respect to kidney transplantation, the author recounted the landmark innovations of French surgeon Alexis Carrel who, whilst experimenting with dogs, figured out ‘how to connect the blood vessels that would allow blood to enter and leave the transplanted kidney’. She also detailed the impact of surgeon Joseph Murray who she credited with the first successful human kidney transplant. In her comprehensive assessment of the practical aspects of kidney treatment, she addressing such topics as arteriovenous grafts, haemodialysis catheters, and immunosuppression for renal transplantation (pages 176-177, 61-62, 25-34, 135, and 158-159).
The author’s personal experience of going through the healthcare system was literally coloured by the systemic discrimination that thwarted Robert’s attempts at getting a kidney through the national transplantation service. To demonstrate that this was on account of his race, the author pointed out that, like other Black people, he ‘waited nearly two years longer than Whites for a kidney transplant’. She supported her contention with further statistics which show that ‘Whites received every other donated kidney and Blacks received every fifth‘. In exploring the cause of this glaring unfairness, the author pointed out that there is a widespread bias that extended from the renal staff – ‘whose job it seemed was to talk Robert out of even wanting a transplant’ – to the transplant nephrologist who claimed that ‘African Americans reject kidney transplants more often’ because ‘their immune systems are just so strong‘. Indeed her evocative decision to donate Robert her kidney was because ‘I just knew that the man I loved needed a kidney transplant and it felt clear to me that the kidney transplant system couldn’t or wouldn’t move fast enough to get him one’. The author discussed several other institutionalised practices that disadvantaged Blacks, such as the delay in referral for transplantation; the algorithm that detrimentally miscalculates the severity of kidney failure in Black people; the vicious cycle that ensures a dearth of Black doctors in renal specialist training; and the negative attitudes that research mentors harbour against studying the racial and ethnic disparities inherent in the kidney transplantation system (pages 13, 44-50, 126 and 208-213).
This book is a testament to the human spirit, and an ode to what makes us human. It is an inspiring, honest, passionate, and intelligent account which resonates as much for its personal narrative as for its societal implications. Apart from raising the profile of kidney diseases and their treatment, the book highlights the impact of these disorders on people; this was reflected quite dramatically in the parallel love story that highlighted the real burden of renal failure and its treatment. The author also tackles the tricky subject of the prejudice which runs deep in all healthcare systems, racial or otherwise, and she does so without shying away from addressing key uncomfortable truths. The depictions of the kidney and its diseases, and the portrayal of haemodialysis and renal transplantation, are most illuminating and beautifully written. The absence of graphic illustrations may have limited the lay person’s understanding of the complex anatomy of the kidney, but the simple and instructive prose however compensated for this.
The book’s admirable exploration of the treatment of kidney disease benefited immensely from the author’s dual perspective as a kidney specialist, and a patient’s advocate. The book is a strong endorsement of the vital importance of the kidney, and it projected this with a thorough review of the fascinating role of the kidneys as filtering machines, and as sources of essential enzymes and hormones. The author also argues for equity in the way health care approaches all patients, and she passionately champions the cause of redressing the damaging disparities that are prevalent not only in renal medicine, but across the breadth of healthcare. The book is relevant both at the clinical front and at the policy-making level; it is a thoroughly enjoyable, uplifting and educational book and I highly recommend it to all doctors.
Publisher, Place, Year: Amistad, New York, 2018
Number of chapters: 19
Number of pages: 261
Star rating: 5