My Kidney Transplant Experience
By: Dorothy Shelley, Sunnyside, New York
My family and I did not recognize the symptoms initially, so I wasn’t diagnosed with kidney disease until the age of 12. Nine years later on January 18, 1983, at the age of 21, I received a transplanted kidney from my older brother Robert.
Thirty years to the day, I was across the globe in Sydney visiting my Australian fiancé. I remember thinking how symbolic this was of how far I had come in life. I used to wonder as a small and sick child if I would ever be well enough to travel, enjoy a career, and married life. Yet, that is what the grace of God, my brother’s gift, and the medical care of New York-Presbyterian Hospital/Weill Cornell Medical Center made possible for me.
I was born with a birth defect of twisted ureters which caused reflux, the backup of urine into my kidneys. By the time I was diagnosed, the kidney damage was so severe that a doctor from a small local hospital told my parents that there was little hope for my survival. As a last resort, he recommended my parents take me to NYP/Weill Cornell Medical Center where they were able to perform surgery to stop the reflux. This seemed to help for a while, and I was able to return to school. Unfortunately, the damage to my kidneys was already too severe. Over time, my renal function was getting worse, and I was experiencing the symptoms of renal failure: itchy skin, swollen feet, fatigue, and weakness in my hands. I received the devastating diagnosis that I would soon require dialysis treatments or, if it was determined I was a candidate, a kidney transplant.
I had always been adventurous as a child and had dreams of traveling the world, so the prospect of dialysis three times a week was very distressing. When informed I was a transplant candidate, I decided I would pursue that option. I am blessed with a large and loving family of three sisters and two brothers. My siblings, along with my parents, agreed to be tested as possible donors.
My dad and two of my sisters had a different blood type than me, so they were promptly eliminated. These days, a different blood type is no longer cause for immediate donor elimination. Along with the new immunosuppressive drugs, this is one of the many advancements seen in transplant science. My other siblings and my mother were tested. The results revealed that my brother Robert was a perfect match. This was surprising to me because Robert and I couldn’t be more different. I’m a petite, anxious, pessimist, and Robert is a big, carefree, optimist. To this day, we laugh at the irony of us two being deemed a “perfect match.” Naturally, I was thrilled to have a donor, but the emotion of knowing that I was putting my own brother at risk was very burdensome. But it also made me determined to regain my health and live a life worthy of his sacrifice. Robert was 26 at the time, married, and the father of two small boys with another baby on the way.
Donor surgery in 1983 was much more complex than it is today. It was a significant operation, requiring a long recuperation period and a very large scar. Today, donor kidneys are removed through the much less invasive laparoscopic procedure. Yet, despite being aware of these daunting facts, and with the support of his wonderful wife Lee, my brother was resolute to donate. Medicaid, the American federal healthcare provider, fully covers dialysis and kidney transplant surgeries. My medical expenses since then have been covered by my New York State employee health plan. I have been very fortunate that my civil service job affords me comprehensive medical insurance, pharmaceutical coverage, sick leave, and access to the best doctors.
In order to increase the chances of a successful transplant, I first had to have a bilateral nephrectomy (removal of both my kidneys). A bilateral nephrectomy is a major operation, and I was hospitalized for three weeks. My attentive family hired a private duty nurse for me. I now had no kidneys and would have to spend the next several months awaiting the transplant and having dialysis treatments three times a week in four-hour sessions. The transplant took place on January 18, 1983. True to form and his humor, my dear brother Robert’s first words to me after the surgery were, “it was a piece of cake.” My new kidney started working immediately, and I can honestly say I haven’t had any problems with it since. My kidney counts are as good today as they were thirty years ago. My biggest challenges the first several months were the side effects of the anti-rejection steroid medications. My physical appearance changed drastically as I gained weight, face bloated, hair thinned, and skin broke out. Emotionally, the drugs caused me to have severe mood swings. The side-effects fortunately dissipated over time as my dosage was reduced. Within a year, I was feeling better than ever. My dream of traveling throughout the world was now a reality. Since then, I’ve toured many exotic foreign countries and have been on no less than a dozen cruises.
I’ve advanced in my career to my current position with the NYS Supreme Court and bought my own apartment in NYC. But most importantly, I’ve had the privilege of watching my nine nieces and nephews grow up, get married, and become parents themselves. My donor brother Robert is now 57 years old and a grandfather.
There was, however, one dream that had eluded me, and that was finding the right man to share my life with. But that all changed when, at the age of 48, I boarded the Diamond Princess cruise ship in Sydney for a ten-day cruise through Australia and New Zealand. I love to dance, and one evening aboard the ship, I was sitting in a lounge enjoying a 50’s music tribute, rocking in my seat, when an Aussie bloke named Ross tapped me on the shoulder and asked me to dance. We spent the better part of the cruise together, and after many conversations, realized we were very compatible. Despite the geographic distance between our homelands and the challenges that this presented, we were determined to pursue a relationship. For three years, Ross spent his summers in New York, and I spent my winter vacations in Australia. Our journey will continue when Ross permanently transplants himself to New York this Spring. Together we look forward to our wedding in August. My donor brother Robert, along with my other brother Michael, will escort me down the aisle to be with my other most perfect match!
Article originally published in the North West Region Kidney Patients’ Association 30th Anniversary Newsletter, 2013.
