In November of 1996, fifteen-and-a-half-year-old Aditya Raghavan complained of a headache-one that could not be soothed with over-the-counter pain relievers. His mother Vasundhara took him to the doctor where more tests were conducted. What the doctor discovered-chronic kidney disease-would change Aditya's life.
In Shades of Life, author Vasundhara Ramanujan tells of her son's struggles with renal failure and the subsequent effects that his disease had on his life. The story traces the major stages of the progression of his disease and at each stage offers a glimpse into the physical, emotional, and psychological impacts of renal disease.
This series of chronological events shows how both mindsets of Aditya and his family collectively evolved until they were able to comprehend, accept, and eventually find the courage to overcome the challenges and continue leading a positive and meaningful life.
Vasundhara candidly tells this story to help others appreciate the enormity of the disease, to help them be prepared to meet the ordeal, and to help them find a life-saving solution.
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Shades of LifeSublime Joy Is in Living
By Vasundhara Ramanujan Mohammad Akmal
iUniverse, Inc.Copyright © 2010 Vasundhara Ramanujan and Mohammad Akmal
All right reserved.
Chapter OneFirst signs ... 28 November 1996
It was the winter of 1996. Lovers of cricket in India were in raptures because the country's team had defeated the visitors from South Africa. Other than the volume of news from radio, television, and the press, it was the outbursts in my living room from my near seventeen-year-old son Dhananjay and his brother, Aditya, a year and half younger, that most often engaged my attention. Both of them were ardent cricket lovers who spent time discussing and statistically analyzing the game. I loved the boisterous hullabaloo that floated through the open drawing room, dining area, and kitchen, mingling with the noise and flavors of my burning hearth.
But though I beamed with joy, I was troubled by different thoughts.
My younger son, Aditya, had missed school for two days. His complaint was a headache. As a questioning parent, I wondered if he was not facing up to the reality of his class ten examinations looming large or if it was truly something in the brain area.
On day three, when it persisted, I called my office, asking for a few hours' absence, and we went immediately to meet Dr. Manda, our family physician. I narrated the incidents of the past few days—Aditya's constant headache, no relief with consumption of a variety of pain relievers. She examined him, the back side of her palm on his temple and surprisingly, along with her stethoscope, she pulled out the instrument to check his blood pressure. After rechecking, she summoned her superior. For a third time, they checked Aditya's blood pressure.
The doctors' expressions bordered on amazement.
I braced myself to question them. The senior doctor spoke hesitatingly; she sensed a problem, as the blood pressure was high for a fifteen-and-a-half-year-old. She suggested a blood test to identify the problem. The doctor called the pathologist at Doctor House, asked for an urgent appointment, and placed a request for an intermediary analysis report.
In two hours, the preliminary test results were spread on her table, and she studied them carefully. Looking up, she said, "It's surprising ... The creatinine level is very high."
Taking a deep breath, and looking for some support from her junior, the doctor said, "I believe there could be some problem with the kidneys."
As we looked on, surprised at what she had said, she continued, "You should get this checked with a specialist. There is a Dr. Bhupendra Gandhi, attached to Breach Candy Hospital. He is a very experienced, senior doctor. He will be able to guide you."
She scribbled a short note to the doctor and told us that the doctor was available during the clinic's evening hour. It would be appropriate to visit him by 6:00 PM.
Chapter TwoEntering the hospital gates ... 28 November 1996
Nestling on South Mumbai's west coast, with rocks guarding it from the Arabian Sea's acts of violence, rest the impressive white structures that belong to the Breach Candy Hospital. On normal days, the sea-facing rooms in the hospital enjoy visual treats, with water lashing against the boulders and then flowing down gracefully in submission. Rough weather predictably influences the water's urgency in hitting the rocks and falling apart with a burst of anger.
Both times are good times to run away with thoughts, sometimes with peace and at other times with some serious thinking on life.
Over decades of service to the human race, the hospital has established itself as an institution with proven medical talent, offering world-class health care and diagnostics. Treatments and surgeries requiring high-precision skills and expertise are conducted here by well-reputed doctors who contribute to making this place a choice for people seeking, among other things, high standards of hygiene and cleanliness.
Since the hospital generally attracts patients with deep pockets, we were worried about how we could be financially affected, if we required the hospital's services.
We took directions from the reception staff to the Kidney Centre. Stepping out of the elevator, we were surprised to hear noise and merriment. Then the realization came that, since it was the visitors' hour, the pediatric ward had a happy atmosphere created by the merry chatter of families and friends. The joy of a newborn creates flutters.
In no particular mood to participate, we turned our attention to finding the long, pale-green—walled corridor that would lead us to the operation theater. We found the corridor, where whiffs of the strong, acrid smells of disinfectants touched our senses, as this area needed the toughest armor against infections. Halfway down, another corridor at the left sent us straight to our destination.
Though we had had the opportunity to visit the hospital before, that occasion had not involved personal medical consultations. We walked with apprehension as uncertainty about Aditya's health and the severity of his illness weighed heavily on our minds. As a headache was a simple, everyday ailment, we wondered why this much ado. Relying on our doctor's advice on a subject of which we had little knowledge, we decided to try to understand how a headache could bear relation to a kidney problem.
A tough façade but totally traumatized inside could describe how we presented ourselves at the nurse's table with our doctor's introductory note. We waited in the lobby among other people, some of who gave a knowing look. We chose to keep our counsel and wait with patience, acquired with difficulty.
The doctor greeted us with a smile as we entered his chamber. Unsure how to introduce ourselves, I blurted out Aditya's condition—the nagging headache; the visit to an optometrist; the medical examination by the family doctor, with no positive result. The discomfort had persisted.
Dr. Bhupendra Gandhi proved to be a man of few words.
He checked Aditya's blood pressure, studied the blood test report, made some notes, repeated the blood pressure check, and shared his preliminary observations by analyzing it for us: "Some things ... need to be seen."
After a brief pause he continued, "From the blood report it appears that his creatinine is high ... the normal range is .6 to 1.2 mg/dl, but in this case ... Aditya's ... it is 4.58 mg/dl, which is rather high." We waited with bated breath, our eyes watching him closely. His eyes were on the report, his fingers busy feeling the texture of the paperweight placed on it.
"The level of potassium at 5.9 mg/dl is also on the higher side, and, considering he is a young man, a little over fifteen years old, I am afraid his blood pressure, at 140/90, is not normal. I would say it is rather high."
We remained quiet.
He continued in a plain voice, "It looks like Aditya has some kidney-related problem. Some tests are needed to confirm the exact condition. Only after full investigation can we be sure."
There was silence from all of us. It was broken when he cleared his throat and, picking up his letter pad, scribbled orders for tests, including complete blood count (CBC), blood urea nitrogen (BUN), ultrasound sonography, and abdomen X-ray.
Anxiety prompted me to ask questions to clear up my doubts as they surfaced, "Doctor, if this is a kidney problem, will it mean dialysis?"
As if giving it some thought, the doctor responded slowly, "It is possible that he would need that," and then when I probed further whether "a transplant was a possibility," he added cautiously with his eyebrows arched, "Yes, even a transplant could be in the cards, but it is still very early to comment." Pointing to the document in his hands, he added, "You know, we need to do all these tests before anything can be confirmed."
He spoke comfortingly, adding that every effort would be made to treat the condition through diet and mild medication.
After nodding our consent to do the tests, we left his chamber feeling totally lost. I don't know how we scrambled out of the hospital, but we knew that getting home immediately would bring relief.
It is difficult to maintain sanity when one hears of a very serious health condition. There is confusion. Thinking is clouded by doubt. Someone should objectively break through the brain cells to speak out loud: "Go slow; think with your head, not your heart; do not get swayed by emotions; be dispassionate. Try to quell all waves of emotion that could destroy sanity and an opportunity to do it right."
Driving home, I checked with Aditya on his reactions. Shrugging his shoulders in a matter of fact manner, he said, "I don't know, Amma ... it's so sudden."
After a while he spoke, adopting a different tone, "But you know, what is there to doubt ... such an experienced doctor certainly will know what he is saying ... no chance that he will be making some random statement."
No sooner had we entered the safety of our home than my first reaction was to inform my husband. As a senior engineering professional in the petroleum and gas industry, Srini was required to travel outstation for client meetings and to go to construction sites, and sometimes he was even directly involved with project construction and execution. Currently he was involved with some projects being executed in Baroda, city of second-greatest economic significance in the state of Gujarat, India, and he had been away for the past four days.
I called him at his workplace.
Slowly, as my news registered, Srini responded in monosyllables, taking in details as I incoherently broke down the information: "Srini, remember Aditya was complaining about a headache? So, we went to Dr. Manda. It is amazing. Imagine, she just checked his blood pressure! And then the senior doctor also checked it. Aditya's BP is rather high, Srini ... cannot understand why this ... anyway, the doctor asked us to get a blood test ... so we rushed to Doctor House, and pathology ran a test ... the doctors found his creatinine to be very high."
Quite taken aback, he kept probing: "Are you sure? It is surprising ... Hmm ... what was the creatinine level?"
"Around 4.5 mg ... the normal level is something like .6 to 1.2 mg/dl. Just a few minutes back, we returned from Breach Candy Hospital. We met a nephrologist, Dr. Bhupendra Gandhi. He is in charge of the hospital's dialysis centre, and he seems to be an expert in the field. So, he suspects it to be a kidney failure of some sort. Tomorrow we need to do some tests—sonography and X-ray."
Finally the news seemed to hit Srini, and he spoke with barely masked anxiety, "Are you saying Aditya has a kidney failure? How come?"
Attempting to be in control of the situation, I simply added, "I don't know how, Srini, but the doctor seemed so sure ... I believe he is right ... somehow both Aditya and I feel that this ... could be it."
"I see ... let us do the tests tomorrow and see."
"But this is bad news," he added in his characteristic manner. I could sense his nervousness and a feeling of shock. "I am back tomorrow morning."
The rest of the evening, I found Aditya quiet and thoughtful. He was sometimes worried, sometimes sad and questioning, other times doubtful about what his life would be. I thought of the many unexpressed desires of an adolescent, which he would never be able to talk about. In a sudden sweep, the very meaning of life was changing for him.
Chapter ThreeInvestigation ... 30 November 1996
The tests were important, so without any further questioning, we got straight into the act.
With the doctor's prescription in hand, we reached Breach Candy as early as possible, aiming to manage the time between tests efficiently so all the results would be ready the same evening. We were meeting Dr. Gandhi at 6:00 PM.
After giving blood samples at pathology for the CBC and BUN tests, we moved to the radiography section for the sonography and the abdomen X-ray. Dr. Gandhi had mentioned that the ultrasound sonography of the kidneys would help in locating the problem.
The radiologist asked us a few basic questions on Aditya's health conditions and a brief family history. A technician applied some lubricating gel on Aditya's abdomen. She spoke gently and asked him to relax, since the procedure was not painful.
The procedure started, with the transducer slowly moving across his abdomen, relaying faint images on the screen that we could not decipher. She moved around for a while, exerting some pressure near the area where the kidneys were situated. She pointed the right kidney out to us and then the left, showing the exact area where the kidneys had shrunk in size due to repeated infections. She remarked that the condition of the right kidney seemed quite bad.
Her assessment prepared us for what to expect when we met the doctor later that day. But the doctor would finally reveal the truth and explain the extent of the kidney's damage. We awaited his verdict.
Chapter FourThe Judgement ... 6:00 PM, 30 November 1996
Srini joined us for our evening meeting with Dr. Gandhi. The wonderful thing about Srini was his ability to think logically and analytically. With use of these capabilities, understanding facts and making clearer decisions would be possible.
Dr. Gandhi studied the results of all the tests.
From the X-ray and sonography reports, he pointed to the exact location of the problem. In layman's terms, he explained, "The right valve is defective, so some urine which should normally come out from the bladder is going back to the kidney. There is a reverse flow of urine."
Leading us to a dummy anatomy of the renal system that stood on a side table, with his hands gliding across it, he began explaining, "Here ... this is the right valve. Normally it opens only downward ... so the urine from the kidney ... goes into the bladder and then through the urethra it goes out of the body. But when this valve is defective ... as in Aditya's case ... the valve swings forward and backward freely, so when the bladder is full, the urine leaves the bladder, but when the bladder is full, extreme pressure builds up, and some urine rushes back through the defective valve ... back into the kidney. Over several years this backflow has infected the kidney."
He rechecked Aditya's blood pressure, and then he moved his hand upward from Aditya's ankle to his thigh, checking for any abnormal swelling. "Swelling means water retention, which would have been a bad sign. Aditya would require Lasix to remove the excess body fluids."
After taking a pause to gather his wits, the doctor informed us that Aditya's kidneys were gradually heading toward complete failure. They were presently functioning partially, but this condition would last only for a short time. Much depended on how well we managed the kidneys' condition.
With his forehead creasing slightly, Srini questioned, "Doctor, why do you think this happened?"
Gandhi explained that it was a congenital problem—a condition that was present at birth. It might not necessarily be a genetic problem, but it was a defect at birth. It is a condition known as vesicoureteral reflux, and it was at Grade IV. In its final stage, Grade V, both the urethra and the kidney would be severely affected, while the pelvis and the calyces would be extremely dilated.
He added, "This would ultimately lead to irreversible chronic kidney failure ... technically it is called ESRD or End-Stage Renal Disease."
"Doctor, normally how long will it take to reach the stage of ... end stage?"
"It really depends on how well the medicines work for Aditya. Also ... if he is strict with his diet, progression can be controlled."
After some time, he concluded, "This damaged kidney condition has resulted in a high blood pressure, which caused him the headache, but we still have some time before that stage. Unfortunately ... if we had noticed it a few years back, a minor surgery would have solved it."
Aditya read out the sonography findings, "Right kidney is 8.3 cm ... and the left is 8.5 cm. So, Doctor ... what would have been their size before?"
Turning his full attention to Aditya for the first time, a smile lit up his face as he responded, "The normal kidney size is about 11 cm ... almost the size of a fist." Raising his right fist, he showed it to Aditya to make his point. The doctor was pleased that the young man had opened up.
I observed them and realized with some surprise how with this moment would lay the foundation for the doctor-patient relationship. My mind escaped from the environs of the hospital with fleeting thoughts on life. Aditya was ill, seriously ill. These were the harsh facts.
I never dreamed that my teenage son would suffer from one of the world's irreversible ailments.
Excerpted from Shades of Life by Vasundhara Ramanujan Mohammad Akmal Copyright © 2010 by Vasundhara Ramanujan and Mohammad Akmal. Excerpted by permission of iUniverse, Inc.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
ContentsForeword by Dr. Mohammad Akmal....................ix
First signs ... 28 November 1996....................1
Entering the hospital gates ... 28 November 1996....................3
Investigation ... 30 November 1996....................9
The Judgement ... 6:00 PM, 30 November 1996....................11
Breaking rules ... 4 December 1996....................19
Taking the reins ... January to March 1997....................21
Learning about kidneys ... January to March 1997....................25
Establishing a routine ... January to March 1997....................29
Getting attuned ... January to March 1997....................32
Exploring other options ... January to March 1997....................34
The revelation ... April 1997....................37
Testing for tissue match ... 12 May 1997....................44
A twist in the tale ... 15 May 1997....................46
Mastectomy ... 30 May 1997....................50
Dialysis ... 30 April 1998....................57
Hugging life with dialysis....................59
Paving the way for the transplant....................62
Registration and preparation ... 7 April 1999....................68
The transplant surgery ... 8 April 1999....................69
Spurt of hospitalizations ... 3 May to 25 June 1999....................78
The debacle; kidney rejected....................88
Sense and sensibility....................95
Accepting kidney rejection....................99
Better dialysis, better lifestyle....................108
Curtain on reality....................111
Some issues that arose during PD....................116
Time for decision-making....................123
Developments in professional life....................133
Our take from our experiences....................135
Our most valued supporters—doctors, medical professionals....................141
Basic glossary terms....................155
Use of information....................165
Reference Materials and Sources....................167
Most Helpful Customer Reviews
I have to say it right off the bat that though this is no work of fiction, at times it felt like fiction to me. And no, I don’t mean it in a negative way. It’s a compliment to Vasundhara because the courage and strength she has shown in her life is amazing. She has fought the disease alongside her son. She has probably had the toughest job – to fight a dangerous disease herself and donated her own kidney to her son. It is well known that there is nothing that can be compared to a mother’s love for her child and Vasundhara has proved that ten times over through her life. Aditya himself is a brave person. Realizing that he had a life threatening disease at the age of fifteen and understanding the implications of that disease could not have been easy. I feel as if he had to grow up a few years in span of a few hours to actually understand. He has fought as hard as one can to live a life that we usually take for granted. His determination and adaptability surprised me time and again throughout the book. To see beyond the next dialysis and pursue his interest showed his strength of character. The book also sends across the message that the doctors are only human after all. While there is corruption even in the medicine line, most doctors are sympathetic and humane. They can each only do so much after all. Srinivas and Dhananjay each played their part in this struggle. But still Vasundhara clearly overshadowed everyone with her strength, grit and positive attitude. What I liked about the book was the Preface written by Mohammed Akmal, an MD who is associated with the University of Southern California. He has been associated with the family for quite some time now. In his words he has characterized Vasundhara so well. Also there is a list of those who has lent their expertise in the medical field and guided the family through the most turbulent times. It was good to see that list there and that credit was given were it was due. There’s also a glossary of the medical terms and a bibliography at the end to guide the readers. Overall, the experience of reading this book isn’t one that I can express through my limited vocabulary. I cannot say that I felt what the family had to gone through because I can only imagine the deep struggle and sympathize with the family. But yes, through the book, I have ‘watched’ the family struggle to deal with a whole lot of things. I have grown with Vasundhara and Aditya and I realize that we take our lives for granted while Aditya did not have that option. While we fight for and about petty things in our lives, Aditya had to fight for his life almost every single day of his life since he was fifteen. I would suggest and recommend this book to everyone I know as it will not only make the readers take a deeper look at their lives but also spread awareness of this killer disease. A MUST READ FOLKS!!
"Shades of Joy : Sublime Joy Is In Living" is an inspirational true story of how Aditya Raghavan navigated chronic kidney disease, dialysis and two transplants. Aditya who was diagnosed with CKD at age 15 ½ , goes on to finish high school, graduate from the world renowned Indian Institute of Technology (IIT) and in May 2009, four days before his second transplant receives his PhD from the University of Southern California. Academic achievements aside, the reader can't help but marvel at Aditya's positive outlook, humor, adaptability and the determination with which he pursues diverse interests. The book is a refreshing break from daily routine that leaves the reader wondering if one is living life to the fullest. A wide variety of readers will find Aditya's story resonate with them. For those blessed with good health, it will raise awareness about kidney health and the importance of monitoring blood pressure and certain blood levels. For those managing kidney disease, it is a valuable resource for navigating doctor's, dialysis (both peritoneal and hemodialysis) and two transplants. For families touched by serious illnesses, especially parents, it is a heartwarming story about how one family rose up to deal with circumstances thrust upon them. The author, a mother, writing about her son, is candid in sharing her hopes and fears. She herself overcame cancer to donate a kidney to Aditya. "Shades of Joy : Sublime Joy Is in Living" is an eminently readable story about a family pragmatically dealing with extraordinary circumstances and finding a deeper meaning in life as a result.