(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.”
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.
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.
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