• Jodi M. Bernstein

Don't Take Your Organs To Heaven, We Need Them Here on Earth

Its November, and two weekends before Thanksgiving is National Donor Sabbath, during which faith leaders from many religions, donor families, transplant recipients, and donation and transplant professionals participate in services and programs to educate the public about the need for the lifesaving and healing gifts passed to others through transplantation, while also encouraging people to register their decision to be an organ, eye and tissue donors.

In 2003, I received a kidney from my niece Rachel. I was fortunate to get a kidney transplant when I was sick enough to qualify, but before I had to go on dialysis. I feel especially blessed to have found a living donor pretty easily, although it did not seem so easy at the time.

An abnormal value on a routine blood test unexpectedly resulted in my being diagnosed with polycystic kidney disease. I say unexpectedly because I was healthy and asymptomatic, and this condition is usually hereditary but no one in my family had it. I learned that the condition would eventually result in End Stage Renal Disease (ESRD). I knew enough to know that anything with the words “end stage” couldn’t be good. Even though I was monitored and my kidney function continued to decline, I lived in denial for about 5 years because denial is a useful coping mechanism.

Denial worked until my nephrologist told me I had maybe a year before I would need to go on dialysis or get a kidney transplant. She referred me to the Transplant Center, where I learned about dialysis options, found out that the waiting list for a kidney would be about 3 -5 years, and was encouraged to find a live kidney donor.

How do you ask someone for a kidney? I may not be a rocket scientist but I did know that this is not like asking someone to loan you $100.00. This was before Facebook was even a twinkle in Mark Zuckerberg’s eye. A friend of mine suggested that I could always go buy one in a third world country. My then-young step-daughter told me she asked her friends to pray I get a liver (whose to say the prayers did not help?)

I compulsively researched the kidney transplant and living donor process. Most major religions support and even encourage organ donation as a humanitarian act. Initial compatibility is based on blood type and a genetic link is no longer required due to advances in anti-rejection medications. The costs of the donor’s medical tests and surgery are paid by the recipient’s private insurance or Medicare. (I became eligible for Medicare based on my diagnosis of ESRD even though I was only 49 and working full time).

What I eventually realized, of course, is that rather than ask someone to give me a kidney, I needed to let people know about my situation and let them approach me. This was not a comfortable thing for me to do, but medical necessity can be a powerful impetus. In December, I wrote a Holiday letter to extended family and friends to let them know about my condition.

Several people among my circle stepped forward but I felt most comfortable considering relatives first. My husband was the wrong blood type. My brother began the testing process but was rejected early on due to high blood pressure. Shortly after my brother’s daughter found out that her father was rejected as my donor, my then 25 year old niece called me on the phone and said, “I have 2 kidneys and only need one, the other one has your name on it.”

The potential donor goes through an extremely thorough medical and psychological evaluation. Rachel had all the tests done long distance. She was informed about the risks and possible long-term health effects, but also learned some comforting information. She can live a normal life and the remaining kidney compensates for the loss of the donated kidney. The surgery will probably be done with a laparoscopic procedure. A woman who donates can still get pregnant and have children. And if she ever needed a kidney, she would be placed toward the top of the waiting list.

Rachel was approved in June as my kidney donor. The Transplant Team asked her when she would like to have it done, and she told them August 8 -- a week after her legal internship ended and two weeks before she returned to her second year of law school. My whole family came from out of town, and although we were all nervous, it was an atypical hospital visit full of joy and laughter. I had a tee shirt made for my niece that said, “I gave my aunt a kidney and all I got was this stupid tee-shirt.” Fifteen years later I remain pretty healthy.

So what does the donor get? The rewards for the donor are psychological and social. Rachel told me, “I had the ability to improve your quality of life, maybe even save your life. It just felt like the right thing to do.”

When she returned to law school two weeks after surgery, her friends were all talking about what they did over the summer. Rachel proudly told them, “I just did the coolest thing I have ever done – I gave my aunt a kidney.” And that is why my husband and I nicknamed her St. Rachel, even though we are Jewish.


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