Time and Tide

Time stands still. The household is grappling with sudden knowledge of a member facing chronic kidney disease. In time things will change. It will seem like a subtle change, but a discerning eye will notice the dent, the worry in the tired eyes and the face wearing a new paint. Without so much happening one cannot pick up the thread of life and move on.

In the latest book, Dr Mohammad Akmal and I have traced the historic perspective on the disease. Some remarkable people showed great knowledge, developing an influence on the mind for management of the disease. Like the family in Italy during World War II or the family with two members on dialysis at the same time or generations of a family with polycystic kidney disease. They somehow seemed very evolved in their health care as if they knew a lot more and were fully equipped.

All these stories come against the backdrop of the early Roman era where a roman bath helped in removing toxins when kidneys were diseased. Then came the revolutionary kidney transplant that somehow changed fate of millions. Who was that brave young man who lay on the table to have his kidney removed? Or how did he possess so much inner courage?

But considering this great early progress and advancement in diagnostics, medications and treatment approaches, one can still see that void; feel the silence as there’s not much change in how this disease is perceived. Same emotions. The shock, fear of death, closed door conversations, embarrassment and such decrepit feelings. World needs to change, come to terms that globally people will be demolished due to burden of disease. CKD is a non-communicable disease and currently the 9th cause of death worldwide. It is notoriously rising in popularity. World needs to make huge corrections to retrace so many developments in farming in water conservation, air pollution and general food habits of people.

Who Lives, Who Dies With Kidney Disease will open many minds to approach people with disease with love and compassion and show them they are important to the world.  It’s not always a simple kidney failure. So many rarest of diseases are seen as impacting the kidneys. There’s a struggle to find a donor.

Amidst all this people are waking up to stand for change. Let’s be that change.

The Kidney Warriors

Faced with life’s greatest challenge one needs to become focussed maintaining a cool exterior and a hard interior to lay foundation for a successful plan. Whether the plan converts into success will be known in time. Kidney disease wears a mask of secrecy, becomes an impenetrable fog that human eyes will struggle to decipher.

The very first story in – The Kidney Warriors talks of a small village farmer who needed to plan for his family. It’s a show of strength, a time to worry, to see yourself at the bottom most rung of the ladder wondering how much is needed to be done. Never the right vs wrong.

You will find these true stories have immense human value; it will leave you wondering if such complicated issues could all be in a single basket.

Father, wife and patients have spoken about their understanding of their situation with full consciousness that they were chosen to join this charade.

Though all stories are reflections of true lives, readers will get to see characters develop due to play of family circumstance, city of habitat, education and inner courage to face a life threatening disease.

Fear lives in the backyard and they behave as if it was non-existent.

My purpose of giving this reading experience to people stems out of my deepest confidence that nothing will change face of chronic kidney disease if one is unaware of how vastly different people share a common stage. In their struggle they put a smile and say, “Let’s get it done.”

Fighting CKD.

Read this book with an open mind to receive the vibes. 56 stories. 15 diseases leading to CKD. Three senior-most nephrologists share important information while four emerging nephrologists guide with critical information.

The Kidney Warriors. A complete package.

Whose life is it, anyway?

Monday morning began in slow motion. The weekend had been relaxing, reading my all-time favorite, The Catcher in the Rye between cups of coffee, marveling at Salinger’s ingenuity. And Monday morning seemed far too boring. Waiting for the publisher’s call seemed eternal till the appointment was fixed. For the present I needed something more engaging, something that will keep my mind occupied. Overtaken by restlessness I stepped out for a breadth of fresh air. Hopefully when I return to my notebook, some fresh ideas would surface making the next publication a hit.

Once outside, I strolled lazily, my eyes searching the street. In a distance I saw a man crossing the road. ‘There’s something odd’, I thought.

Watching him closely, I realized it had something to do with his gait. It was possible that he was pulling a load, but from where I stood watching him, nothing was visible to me. My eyes moved across the street. The traffic signal for crossing was now 2 seconds to go. I grew anxious for him to cover the balance distance before it became a stop sign for pedestrians.

My gaze moved to other people on either side of the road. A lady was walking briskly, towards me on the opposite pavement. She was clutching a floral print cane basket. A man dressed casually, wore a worried look as he was desperately searching his wallet; a cop car cruised to a halt at the far end of the road and there were a few people either side of the road in formal attire making their way to some meeting, heading to a Starbucks or possibly just to an ATM.

I turned my attention to see the man of my first interest. Finally he had reached the pavement. He seemed to be taking a deep breath. My breath grew normal, but somehow there was a lingering doubt if all was well with him. I fixed my gaze on him, his legs and was expecting some more action.

As he turned, he began walking slowly towards me I noticed that he was stooping on his left side. ‘Ah! His left leg is shorter’, I thought trying desperately to fix the puzzle. ‘Or is he blind?’ was the next thought that raced through my brain.

Hmm, something was wrong. I kept watching him, amused at my new diversion.

My human instinct prevailed keeping my curiosity active under the circumstances. Now I sought a clearer view of this mysterious character, on which my attention remained captive for the last seven minutes.

He stopped mid way, making me impatient. I didn’t have all day to wait for him to come closer. I decided to stroll reducing the gap between us. If he was blind, what harm if I looked straight at him or even stared at him. But I relinquished such thoughts and permitted sly glances in his direction.

I moved forward.

We were about 30 feet away and suddenly I was stalled by a SUV exiting a mall. So deeply engrossed I was on the subject of my speculation that I had ceased to be aware of my surroundings.

As the vehicle moved away, I looked into open space as the man in pain was not within sight. With a few hurried steps and heart pounding wildly I reached the block where he was seen last. Turning to my right I saw him lying in a pile against an iron railing.

Alarmed at the sight, I took a step forward, reached out gently, “Hello…is everything fine with you?” He looked at me blankly, and I realized his eyes had vision. He was trying to breathe but found great difficulty doing that. He said simply, “Yeah sure, feeling lousy.”  I asked tentatively, “Is your leg hurting?”

“Not really,” he said in a very tired voice. “I think my leg is heavy”.

I was in a fix. I must get him medical help, my mind said. As a visitor to Los Angeles, I had learnt of a County hospital that gave emergency treatment. Yielding to my sense of righteousness, I pulled out my hand phone and dialed 911. I was subjected to questions on emergency condition and exact location. Responding with as much details as I could share, I was relieved and looked at my subject reassuringly. I prayed that I did the right thing.

Even as I was replacing my phone back into my coat pocket, the blare of the cop car, and high pitch roaring sounds of fire engine and ambulance arrested my attention. I was not expecting so much to happen and that too in a matter of minutes.

The emergency services had arrived. Responsible for the phone call, I was asked several questions before the man in pain was placed on a stretcher and lifted into the facility. I climbed onto the ambulance knowing well my responsibility to complete this task.

The ambulance attendant began talking and collecting the patient’s personal data. He was 35 year old Tom Standler and we were heading to the LA County Hospital. The ambulance nurse-cum-technician checked Tom’s vital signs during the drive to the hospital.

Blood pressure was – 140/90. Low breathing, so Tom was connected to oxygen.

While the admissions were being done, we were seated near the ER. Many serious accident cases, wounded criminals accompanied by cops were given priority. Others were with serious conditions, needing immediate attention. Tom slouched beside me, resting his head on my shoulders as we continued our wait.

It was almost one hour later that Tom was met by a junior nurse who asked profile questions and how he felt. Tom was unemployed, lost his wife a few months earlier, hence single and neglected. He gave his social security number. I managed to butt in with the BP data, hoping it could give indications. She ignored me, so I was pleasantly surprised when she returned within a few minutes to wheel Tom into a cubicle. I tagged along more out of concern.

The testing process started.

Nurses, interns walked in at different times to check pulse and blood pressure, to collect blood samples. We waited patiently. A stout nurse came in to collect a sample of the urine. But Tom was unable to pass urine, which she noted in the admissions sheet. She walked out.

Tom rested intermittently and I sat wondering if the publisher had called. I quickly made a few urgent calls from outside the ER and returned to find a shocked Tom looking up at me.

Slowly he spoke with as much calm as he could muster, “I have a kidney failure:”

I sat and my first thought was I must console him. But as an after-thought I told him to get treated. He nodded slowly, but thoughtfully while we continued our wait.

Hours later a nurse came in. Tom was being moved to a ward. They would start him on dialysis as his creatinine was 1300. So paperwork for admission started. I looked at my watch. 18.20 hours. No wonder my stomach was growling.

I became aware of Tom’s eyes on me. His eyes expressed his gratitude while he vocalized his feelings, “Good we reached on time”. He concluded that I should leave. Gathering my wits I agreed, promising to meet him the next day.

I left the hospital premise relieved to be out of the intense atmosphere where people were fighting illnesses. Here, Tom Standler would find his chance to survive. I was glad to have been instrumental in his health recovery.

[The above is not based on any real life story or incidents. Any resemblance to a similar story is purely accidental.]

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Matter of significance

There was so much happening in our household. Amma came back from the hospital with a little male child­­­­­­­­­­­­­­­­ – very fair and handsome, his hands and feet were soft, his ankle crinkled and his eyes almost shut. Everyone was around the bed, excited. Appa was overjoyed over a second male child after four girls and announced, “He is Boss.’ And so that name stayed with him.


Soon Amma observed Boss was lagging behind on normal developmental milestones. To clear her doubts she met a reputed child specialist to find out what made Boss different. Seeing the child’s ‘mongoloid’ features, the expert immediately declared Boss as a ‘mentally retarded’- a generic term used for people with limited mental functions.

Shattered to learn that the child will be a slow learner, have learning disabilities, communication challenges, emotional and behavioral disorders – the whole lot that she did not wish for, Amma decided to work her way up to give him a glimpse of the world cherished by all, conquered by few. Our family rallied around our youngest member with our protective hands.

Dr. Jerome Lejeune discovered that ‘Down Syndrome’, commonly referred to as ‘mongoloids’ was a result of chromosomal abnormality. His research led him to a conclusion that chromosome number 21 contained an extra partial or complete chromosome in those called ‘mongoloids’. Amma’s advanced age for child bearing [mid thirty’s] became another reason for delivering a mongoloid child.

About the time when Boss was born, ‘special education’ was introduced in schools in advanced countries to help such kids. In India it took longer to be implemented.

Boss started school at two years. When the institution found his learning capability below the classes’ standard, he was trained by Parsi teachers at home and at a special school for developing children with learning disabilities. Amma believed people with sensitiveness, understanding and patience would help her child in comprehending the world. Her efforts took direction and our character ‘Boss’ emerged, a.k.a. Srinivas Ramanujan.

From mid-70, India saw some marked changes in education for children with special needs. The early intervention programs were popularized. Specially trained teachers were employed in schools for these kids. Opportunities existed for the younger generation to benefit. 

Boss was a great wanderer. At five years he ventured out alone in spite of our vigil. His return home was marked with relief – but with a large box of biscuits or chocolates that the grocer sold him with great aplomb. He had remained the store’s single high value consumer, patronizing Britannia and Cadbury products. Amma was hurt that the store keeper exploited his down-syndrome status, but swelled with pride, that Boss opened the box at the apartment complex gates and generously handed every kid who swarmed around him. He won their hearts and he never got teased for being how he was. His wandering habit took him to many a highway, on a bus ride far from home, or he cycled away at high speed. When rebuked, he would repent and repeatedly say, ‘Amma, Nahin Karega’. 

As a music buff, his choice was soul searching music from Bollywood, Classical Carnatic, and also instrumental music. While listening to them his body rocked with joy and total abandonment. From an early age, his ability to select his favorites from a huge stack of LP and EP records, similar looking, and play it on a sophisticated record player, held us by awe. In later years, to give wings to his passion for music, he received training to play on the Tabla
Boss’s love for kids was overwhelming. His young nieces and nephews took his refuge when their mothers were furious with them. He established peace making the kids happy and the mothers ashamed under his calming influence, as their wrath suddenly appeared irrelevant. 

Greater awareness of the condition, improved methods in education, parents’ education made handling of children seem easier. Boss and his group – Vasudha, Vedanth, and Geeta enjoyed a good level of training, personal development and their achievement was commensurate with their level of retardation. 

Who was a winner? 
To these kids the word ‘winner’ had little significance. They lived in bliss with what they possessed and spread joy, no matter the consequence of a race/marathon they participated. After all even among normal human beings, only one person can top the chart.

They were better equipped to accept the verdict of a ‘loser’ than any of us, who were ‘normal’ human being. 

Boss probably had an IQ of 50, when IQ for mentally retarded was below 70. Even that was of little consequence to him as he leaves behind his imprint in this world. 

What makes these kids like Boss, different? 

God’s precious creations, such simplicity, no show of malice, never knew jealousy and their hearts filled with pure, undiluted love. They were fortunate to live in a community that showered love, protection and received special schooling. That their birth was not in the 18th and 19th centuries when the mentally retarded were removed from families and placed in an ‘asylum’ which provided basic necessities and that, they were born when world saw a new way of treating mentally retarded. That their birth was in educated families and they did not receive ill-treatment, which many like them face even today, to the severest extent any human kind can face. Such cases are still heard of in small towns/ rural India. That they were born in financially well placed with families, who cherished them. That they lived their lives well and in death, they left behind families who will shed tears and miss their presence for many long years. 

The glorious tributes that Boss received since his departure on 5th November 2011 is testimony of his greatness. Boss had every relative, cousin, friend mourning for him, wishing his soul every peace. Without vocalization of his thoughts, merely through subtle movements, Boss had touched people, some of whom he has not met for over 30 years.

With loving memories:

Padma Raghunathan, Prema Raghavan, Kausalya Srinivasan, Rajalakshmi Raghavan and Vasundhara Raghavan, their spouses, and all the children

Opportunity knocks at each door

The sunshine in my life dimmed in 1996 when my fifteen year old was diagnosed with a chronic kidney failure, due to a reflux causing urine to flow back into the kidney. Nothing changed my life dramatically when in May 1997 a reputed oncologist spoke to me of the hard lump in my breast. “Lemon size” was his words as looked at me after a physical examination.

Wonderingly, he phrased the question, “How did you not notice it?” even as his eyes searched my face. Embarrassed at my inadequacy, I explained of my son’s renal health, my preoccupation with diet, medications, mentally preparing for dialysis and transplant, whatever needed. Speaking straight from my heart with face taut, I almost mouthed my death wish- that I would like to donate my kidney to my son before the cancer spreads further. To divert my attention the doctor spoke of scheduling an early surgery and advised further investigations to be conducted.

After a mastectomy, six cycles of chemotherapy and radiation which were efficiently managed by my oncologist, the nephrologists tested me thoroughly before declaring me fit for the organ donation. Today, nearly eleven years later after my son lost my kidney, much after my elder son gave him his kidney and our family saw the sun shine brightly, I could derive the fundamentals for surviving major illness.

The patient must have a clear understanding of health conditions, accept it, be medically compliant, have faith on the primary doctor’s capabilities, and ultimately accept that a superior power determines the dynamics for his/her survival. For the doctor it is using every power to find solutions to problems surfacing, acknowledging patient’s right to live and ensure that he works towards it.

Survivors of illness are happy people. They have done everything right but importantly their chance to be alive was hand-picked by the Super Power. Notwithstanding, the expertise of the treating doctor and his achievements and credits, it is well known that many patients under that doctor’s care have lost their lives while battling a disease. People, succumbing to illnesses, may leave behind unhappy and resentful families. Time will heal their wounds. Time will also show them value of accepting that the hands that worked on their family member never had power to grant life. That death knocked at some doors at an inopportune moment.

I learned a great lesson through cancer and stages of kidney disease when I walked the path with my son. Nothing is as it seems; nothing is within our arms distance. Everyone has to go through the experience hoping they reach the end of the tunnel. As I look back I see familiar faces among those fallen down in the path. It was not theirs to choose the opportunity to live; they had to simply seize what was given to them – to live or not to.

With salutations to Oncologists- Arun Kurkure M.D and Late D J Jussawala M.D, nephrologists B V Gandhi M.D and Mohammad Akmal, M.D

A parting gift, kidney donated!

(Sad and beautiful story of Carolyn, Richard, Andrea and Amy. Narrated by Andrea, through my Facebook friend Joe Kralicek.)

“In case you ever wondered what a donor family goes through, here is an article from my donor Carolyn’s daughter Andrea. And to clarify, the “Joe” referred to in this, is of course me!

On October 30, 1992 my Mother, Carolyn Sue S. R., came home with a pounding headache. I arrived home from work as a social worker at a long term care center. My name is Andrea R.B. and I was 23 at the time. My sister, Amy R.R. was 22 years old and a student teacher, and my Dad, Richard R. was a pharmacist were seated on our couch looking at homemade cards my sister’s classroom had made for her, as she was student teaching at an elementary school in Waterloo, Iowa.

My Mom was a physical therapist and my Dad was a pharmacist. They were both current on trends in the medical field. I say this because Organ Donation was not widely discussed or mentioned in the media, let alone in your doctor’s office or while creating Living Wills.

They could both sense that her headache was unusual and she tried lying down in her bedroom. I went into her bedroom and laid with her and talked softly with her. My Father came in and said he thought it was best to take my Mother to the emergency room for pain medication.

My Father helped my Mom change out of her work clothes and she wore Keds tennis shoes, a fuschia t-shirt and her favorite jacket with her purse tucked under her arm like a football. I sat down in the living room with my sister and we watched them go out the front door. That was the last time we saw her.

It seemed like forever but the phone finally rang. It was the hospital’s Chaplin calling to tell us to come to the emergency room to be with our Mother. When we got there our Dad and a Doctor took us aside and told us that our Mother had had a cerebral aneurysm and was unresponsive. We went into the room where the nurses where providing oxygen and monitoring her vitals.

We were told to talk to her and that she would here us. We told her we were there. We gently slipped off her jewelry so it would not get lost.

There was no neurologist in the surrounding area that could repair the aneurysm so a flight plan was made from the hospital in Waterloo, Iowa to St. Mary’s in Rochester, Minnesota. Unfortunately the medical helicopter at the Waterloo hospital could not transport her due to a warning light. We waited for another helicopter to come and our family was escorted by police officers to the Minnesota border.

It was after midnight and the doctors caring for my Mother shared with us that she was no longer physically alive and that a respirator was breathing for her. My Father took my sister and myself into a private room and explained that our Mom had wanted to be an organ donor. We silently listened as a gathering of a transplant team met with our family to discuss and explain the details of how our Mother would be treated as an organ donor and what organs would be donated, should we give our consent. Our Father was very patient and allowed my sister and I to participate in the decision making. The
organ donation team carefully listed each organ that could be donated and we gave consent.

Once again gathered in intensive care and said our good-byes. It was difficult, but we were comforted knowing that her decision to share of herself in such a special way would bring life for other families. The transplant team began to work at high speed and camped at her bedside. I listened to their medical jargon as they prepared to take my Mother into surgery.
I asked them if she would know what was happening and they replied no.

Over the course of a year a transplant coordinator sent us newsletters and educational material about grieving. There was a chance to correspond with a donor recipient, but only if both parties agreed. One day we received a heart-warming letter from a man named Joe. He was very kind and thankful and wrote beautiful poetry about his transplant recipient process.
My Mother passed away on October 31, 1992. Her name was Carolyn and she chose to share the gift of life. It is August 12, 2013. My sister and I have a constant friend in Joe. We no longer correspond with the transplant center, but think of it every October. Give the gift of life, be an organ donor.”

The pathfinder

Man was destined to give and receive, to laugh and cry, to make and break as he will. Some men were destined to also take challenges, while others enjoyed benefits of miracles.

The world was shrouded under a dark cloud. Humans suffered in many ways and then one day a man was detected with failing kidneys. People said, he will not live long. The poor man struggled and panted; he was not able to eat, nor drink, nor breathe normally. His legs swelled up, and the doctor would observe, “There is water retained in the body, since he did not pass urine.”

Those were days when people heard stories here or there of someone dying of kidney failure. People talked in whispers. Was it fear, embarrassment or any other reason, was not known.

Human beings crippled by the ailment, suffered and struggled. There was pain and sorrow, above all, no hope.

Then the clouds moved, people who waited patiently knew hope was here.

Newsmen reported of ‘unusual happenings at the Brigham Hospital’. Suspicions arose when reports of finger printing done at the local police station, leaked.  Amidst media speculation, the radio broadcasting day to day on what happened in the hospital, till the first transplant was successfully done by Dr John Murray. It was the case involving Korean War returned Richard Herrick whose kidney failed and his twin-brother Ronald stepped forward to donate.

In a rare manner, the doctor took center stage. He wielded a power no one possessed; the power to heal, to fix the impossible, and to give hope for surviving a chronic kidney failure.

Richard lived for eight years and died of unrelated illness.

23 year old donor, Ronald lived healthy and happy well past 75 years! In 2004, Dr Murray and Ronald raised a toast to 50 years of the first successful kidney transplant.

That’s life, loving and giving.

No moment to wonder, no moment to withdraw, time to commit and see another person live a life beyond pain and endurance.

This is a tribute to the late Ronald Herrick and Dr John Murray.

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Source: Chapter 9 – Richard and Ronald Herrick, First Identical-Twin Kidney Transplant. (pdf) – Surgery of the Soul.

Capturing moments

Time had stood still. Stunned into a silence, we felt our lives suspended by a thin, fragile rope with uncertainty looming large. Our fifteen and a half-year old son’s kidneys were nearly shut down. “Chronic kidney failure,” was the words used by the specialist. The suddenness had made us apprehensive and we smelt danger, discomforted by the newness of this disease that was supposedly associated with adults. To regain our lost composure we needed to find some good solutions.

Using analytical skills, armed with some courage and understanding, we took baby steps in gaining knowledge. It meant closely studying every aspect of the disease. As we unraveled the mystery of kidney failure, we learnt the gravity of the disease which kept the patient involved with diet, medication, blood pressure monitoring, and periodic check- ups. Each of these was directly related to food and fluid intake as a measure against urine outputs.

The family worked together, on a set goal of a transplant option as soon as my son began dialysis. I offered my kidney. It was a practical decision. My husband was a diabetic and my elder son just seventeen years. A few years later, after I finally managed to donate my kidney against all odds of fighting a breast cancer, the horrific chemotherapy and radiation, I experienced many other feelings. It was not joy, nor was it pride, but a completely new sense of being me, myself.

Life had changed dramatically but I drew comfort of having reached the safe zone.

I saw the whole world on the other side. They did not see, know, or understand how and why our lives had changed. I made it my responsibility of telling how a young man faced the life threatening disease, sought treatments and finally found joy in his life. Importantly tell people why they should protect themselves against a kidney failure by taking preventive steps in certain health conditions.

I realized that managing life with the disease was difficult, sometimes the huge treatment cost made it unaffordable for some patients. Finding a willing donor was a huge task, and many were unsuccessful in even arranging a transplant. Above all a cancer survivor qualifying for a kidney donation was uncommon.

“Shades of Life” is an inspiring book that could touch people in every walk of life. The protagonist made it his mission to find joy and lead a wonderful, near normal life. He lost his kidney again in 2006. After many earth-shattering experiences, his elder brother donated a kidney in 2009. In these 15 years, my son had graduated from Mumbai’s Xavier’s College, did Masters in IIT, Powai, graduated as a Doctorate in Physics from University of Southern California and is now on a post doctorate at University of Alberta, Canada.

Shades of Life- Sublime Joy is in Living – by Vasundhara Ramanujan is co-authored by Dr Mohammad Akaml, USC Kerk Medical Centre.