A Story of Grit, Hope and Hard Work

Life of a patient living with ?a life threatening chronic disease? is tough,? scary and lonely.?

Kamal Shah, a patient of a condition called Atypical Haemolytic Uremic Syndrome (A HUS) that resulted in failed kidneys at a very young age has written this remarkable book Silver Lining. It’s a must read for? every patient on dialysis in particular and patients fighting with serious chronic diseases in general.

When a specialist doctor discloses a difficult diagnosis with a recommendation of a treatment such as? a dialysis or a chemo/ radiation or an organ transplant, the patient and the immediate family? is shell shocked.? It is difficult to come to terms with the diagnosis and the future that holds innumerable hospital visits, lab tests, medicines, dietary dos and don’ts, days in and out of day care facilities, infections and complications. While the hospitals and doctors may do their best to get the patient and the family to come to terms with the disease, they speak from a clinician’s point of view.

The patient and family are anxious to know other details like will the treatment be painful,? how much will it hurt, will the patient be able to travel, go to work, manage household chores, what about side effects, what all could go wrong? Will the patient be able to walk / drive home after a day’s treatment, will there be disability - short term or gradual but permanent, what food to eat or avoid,? what will be the follow-up regimen, will there be life of physical dependence... zillion trivial but real doubts, zillion anxious moments. For most patients, there is hardly any help available unless there is someone in the extended family or friend circle who has gone thru a similar ordeal.

This is where I find Kamal Shah book "Silver Lining" truly outstanding. It’s a story of a patient told to other patients from a patient's point of view.

Kamal has fought a valiant battle with his kidney disease that was a result of a very peculiar condition called Atypical Haemolytic Uremic Syndrome (A HUS).? Diagnosed at a very young age, when all his plans to go to the US university , get a degree, make a career were shattered. From a life of a studious young man he was plunged into a life of a patient, with no cure in sight. ?

Living with dialysis for decades and trying to lead a normal life is by itself a spectacular achievement. Kamal made it his business to chronicle his journey thru his blogs and now in the form of a book. I am sure the book will come as a big help and inspiration to patients who have been living with weekly day dialysis sessions, in and out of dialysis centre multiple times, living with severe dietary restrictions and sometimes losing all hope of leading a normal life. Kamal writes this book with such remarkable detail that it can serve as an excellent guide to dialysis patients, old and new.? He goes at length in describing the regimen, the complications, the journey of other fellow patients. It is his quest to lead a normal life, to be able to work, to be able to travel that has propelled him in creating solutions and the great thing is that he cares to share these with fellow patients.? This is a book written with genuine compassion and empathy. ?It is fascinating when? Kamal writes “Every time I faced a trial life would offer a solution”. ?When his kidney transplant failed, he found about PD, when that failed , he worked on home HD Something of this eternal optimism rubs ?on you as you read this book.

? What I also find remarkable about this book is its honesty and sincerity.? There is no dearth of quacks and psuedo-gurus in our society who claim to have a remedy for incurable ailments. Sometimes ?it is a temptation, sometimes pressure from the loved ones, friends & family to explore these alternatives. Through his research and connects Kamal conquered his condition and created means to lead a normal life. Yet he writes very candidly about the Charmed Water phases that he went through, explaining, how the seesaw of hope and despair plays on a patients mind.

Love for everything Ayurveda and distrust of allopathy is yet another thing that a chronic patient gets bombarded with all the time.?? Kamal makes a very telling point though, ?when he says that there is no Ayurvedic ICU or a homeopathic ventilator.

It is yet another ?marvel that Kamal's quest to conquer his disease did not limit him to his own condition. Joining hands with Vikram Vuppula, ?his role in creating Nephro Plus is an equally fascinating part of the story in this book. Kamal does a great job of narrating ?the journey of Nephro Plus. How they hit upon the many innovative practices and how keeping patient at the center of every thing at Nephro Plus was not just a best practice but a company wide obsession. How they grabbed the opportunities to partner with the nephrologists, how they joined hands ?with the governments and how ?continued to grow. The book ends with the success story of Nephroplus becoming? big enough a company to be able to acquire DaVita India, it's a story every startup would aspire to.

Silver Lining a great book, a must read for patients fighting their battles with chronic disease as well as to those working in the healthcare space, wanting to change things. Kamal thanks for sharing your very inspiring story.