This is a book review of
Polycystic Liver Disease, information for patients by David Drum
Background: author and dates
This book was released on Kindle in 2013. It is also available in other electronic book formats on iTunes, Barnes and Noble, Eason, and on the author’s own website.
It was published by Burning Books Press which appears to be owned by the author.
David Drum is an American journalist who has focused on medical issues in his previous writing. This is his only book on the topic of polycystic liver disease, the trigger for his research being his adult daughter’s diagnosis. His other medical books have been co-authored by physicians; for this one he has taken advice from two Mayo clinic dieticians but the rest of the information has been distilled from medical websites and journals. He has clearly done a great deal of research and lists 77 papers in his bibliography. It should be noted, however that the most recent research quoted is from 2012 and much is from as long ago as the 1990s. The last four years has produced a number of significant papers on the topic and a google scholar search yields over 1700 links since 2012. This is obviously an issue with any book format as opposed to website information and I am not saying it is out of date, just that one should take this into account when reading the book.
The intended audience for the book is patients with PLD. At the beginning he states there are over 200,000 such people in US – potentially a large audience, though this is limited by the only version being electronic. The language used and the structure of the book makes it an easy read and he has included a glossary of terms to help.
Of course, what you really want to know is ‘Should I buy it?’
That’s a hard one to answer, it depends on your starting point, how much you have already read and what your physicians have told you about your PLD. So, without breaching any copyright laws I shall aim to give you an idea of what this book contains and whether it would be helpful for you. Please read this post with the rider that I am just another reader and another patient, not an expert, albeit my medical background may make it easier for me to access and understand a variety of sources.
There are 7 chapters in the book, sensibly organised into background, causes, liver physiology, symptoms, diet, surgery and drugs.
Accustomed to reading academic books and papers I found myself frustrated at the lack of in-text referencing. Yes, at the back, each chapter has a list of references, but I found I wanted to know more than “one paper says…” so I could evaluate the strength of the statement for myself. However, given the nature of the book I think I am being unreasonable here and what he has produced is more readable and easier to understand than it would be if the references were allowed to intrude into the text.
When I have assessed dissertations and academic work in the past I have selected a few of the references to check validity. Likewise with this book, a random 10% have checked out. Most importantly the book aims to be unbiased.
The best chapters in my view are those describing different surgical and medical management approaches while the chapter on nutrition seems the weakest. The author advocates a healthy lifestyle and mentions some general measures such as organic food, vegetables, and avoiding processed foods, but none of this advice is specific to PLD or based on research with PLD patients. That isn’t his fault, there is a knowledge deficit here and a great deal of misinformation on websites that purport to be medical advice. I don’t disagree with his dietary comments apart from the paragraph where he talks about salt: here he uses the terms sodium and salt interchangeably yet uses numerics for recommended daily allowance without specifying which. One fact he does emphasise is that the normal measures of obesity such as BMI, may be inaccurate in patients with PLD and that nutritional status needs assessing separately from weight.
Now the liver is a mighty complex organ, medical students can spend weeks learning about all of its functions. Trying to slim this down to 2-sides of A4 (do you recall having to restrict your essays to that length – or were you like my children for whom it was 2 sides too many?!) is always going to be a problem and I am afraid the authors description probably doesn’t succeed. The anatomy is boiled down to 4 lobes, 8 segments, 5 ligaments and 5 fissures ( what the heck does a ligament do in the liver?) and likened to a deflated football. Liver physiology is better tackled but less readable by using some jargon terms like portal vein and clotting factors. Still, you don’t need to know the detail here especially given that actual liver function is not often affects in PLD.
The different surgical options (aspiration, sclerosants, fenestration, resection, transplant) are covered well and supported by reference to various series studies. I would have liked more explanation of the MELD score (model for end stage liver disease) used for prioritising transplants. The statement concerning combined liver and kidney transplants is out of date, I believe. The chapter on drug treatments mentions ocreotide, lanreotide and pasireotide (my spellchecker has major problems with me writing those names!) but there have been more recent studies that may alter his conclusions on them.
The bottom line of my review is that this is a resource of information that will be useful to some people. It might help relatives to a greater understanding without swamping them with detail. If you have done your own reading around and tackled some of the websites or read the files pages on Facebook groups then you will probably know more than what is in this book.
It isn’t expensive, less than £4/$5, but if you want it for informing your family then you will have to lend them your Kindle, iPad or phone! In my experience they don’t give them back!