Lost in Transplantation: A Living Donor’s Perspective

This blog post was made by Eldonna Edwards on March 5th, 2015.
Lost in Transplantation: A Living Donor’s Perspective

Ten thousand thoughts are not as good as one action. ~~Adyashanti

From as far back as I remember I’d always associated the word philanthropy with wealthy individuals or organizations who donate money to charitable causes. People like Bill Gates, Warren Buffet, Ted Turner, and rich widows who leave lofty estates to libraries or colleges. What I’ve come to learn is that the Greek etymological root of philanthropia is “love of mankind.” Philanthropy is simply being of service to one another through concern for the welfare of our fellow human beings.

I am not a rich woman, nor did I grow up privileged. However, as the daughter of an evangelical minister I learned from a very young age that no matter how poor you were, giving back was imperative. I no longer attend church or subscribe to any religious sect. I tend to describe myself as a devout agnostic, meaning I’m sincerely uncertain about a higher power or what happens after we die. However what I am fairly certain about is what matters before we die. It is my belief that each one of us can make a difference in the quality of other human lives. Whether that means going the extra mile for one’s patient, giving money to a reputable charity, offering your time at the women’s shelter, or in my case--donating a kidney to a stranger on dialysis--each is a path toward the same goal. Every interaction with a single individual creates an opportunity to alter both of your lives for the better.

Altruism is defined as “the practice of unselfish concern or devotion to the welfare of others.” It exists in order that we take responsibility for the greater good of our human community and to create balance for the inequality and unconscionable inhumanity that persists in the world. I have to admit I take issue with the word “unselfish” because I can tell you from experience that when you help someone it feels good. I prefer to call it enlightened self-interest. There is no metric for calculating the outcome of donating your cans and bottles to a needy family collecting returnables or paying for the person ahead of you in line at the grocery store but the immediate reward—that rosy feeling we get when contributing to the greater good—makes us happy, and thereby motivates us to continue the cycle of giving

The question I’m most asked is, “Why? Why would a healthy individual put herself at risk, give up an organ to someone she doesn’t even know? Why go so far out of my way to donate a kidney when this disease hasn’t affected a close friend or anyone in my immediate family? Why not just donate my time instead of one of my vital organs to someone I don’t even know?”

These are all perfectly legitimate questions however, my motivation wasn’t born out of logic so it’s difficult to explain. But I’ll try. When I was eight years old a new family moved into our small rural town. The father dug wells for a living and their ramshackle home housed half a dozen kids. Two of the girls ended up in my second-grade classroom and both showed up wearing the same clothes to school every single day. When I asked one of the siblings why she never wore a dress she answered that she didn’t own one. Our family didn’t have much and most of my clothes were hand-me-downs from my older sisters but I knew my two new classmates had less than I did. Way less. The next day I selected two dresses from my closet and gave them to the girls. You would have thought I’d given them tickets to Disneyland based upon their reaction. It is my first memory of the correlation between donor and beneficiary and I’ve never forgotten it. Forty years later I met a woman with kidney disease. I had two so I offered to give her one of mine. She turned me down, partly because she wasn’t ready and partly because at that time, non-related donors weren’t accepted at most transplant hospitals. Little did she know that our chance meeting set me on a path I never expected and that the gifts I’ve received as a result are much greater than the one I offered.

I truly believe we are all brothers and sisters in this world and that by helping one person you help the collective. I believe each of our deeds, good or bad, creates a ripple. Birth might be about circumstance but life is about choices within the events that occur year to year, day to day, and most importantly, moment to moment. What looks random in the immediate moment might seem like fate for those that believe in predestination. For me, it was merely an encounter with a person with kidney disease who raised my consciousness about a particular form of suffering and I chose to act upon it. Knowing my donation made a positive difference in the life of a recipient and his loved ones is awesome. And even better, if sharing my donation story helps just one more person consider living or deceased organ donation then everything will have been worth it.

Between A and B, life and death, all we have is each other and I believe our purpose is to be of service, make a positive contribution to the world, relieve suffering and bring joy to others. To that end, I’m grateful for each person with kidney disease who has touched my life with stories of hardship and hope. And I’m thankful to all the doctors, nurses and other important fibers of the amazing tapestry of medical miracles in the dialysis and transplant field for not only giving sick people a better quality of life but for helping people like me find deeper meaning and a higher purpose in life. It is an honor to be one of the tiny threads woven into our overlapping lives.

See a trailer for a documentary about altruistic living kidney donation that Eldonna took part in.

Comments

  • Michael Gaudet

    Mar 7, 8:29 AM

    Thank you Eldonna, for everything you have done and are doing, to put it in the present tense. Your lovely book "Lost in Transplantation" was a delightful, life-affirming experience to read. When I received the "Gift of Life" aka a kidney transplant from my brother on 11-17-1979, my life was changed (for the better) forever. So, from the recipient perspective, I tip my hat to you as an "Earth Angel" and honor your contribution, that goes so far beyond your original gift!

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    • Eldonna Edwards

      Mar 7, 2:21 PM

      We all need to tell our stories, to get the information out there. So few people know the reality of living donation, CKD, dialysis, and transplant. I look forward to reading "Dancing with Rejection" when it comes out! :-)

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  • Sharon Gibson

    Mar 6, 10:47 PM

    Well Eldonna, thanks for being you, for your wisdom of words and for making such a positive difference! xo

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    • Eldonna Edwards

      Mar 7, 10:16 AM

      Thank you, Sharon. <3

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  • Lindsay Coursen

    Mar 5, 8:23 PM

    Beautifully written. I also found it very hard to explain why I wanted to donate. I couldn't understand NOT doing it. I am donating to my sister-in-law this month.

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    • Eldonna Edwards

      Mar 7, 10:15 AM

      Thank you Lindsay for your comment. I feel exactly the same way. Once you become aware of the need that choice is clear.

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  • Maureen Boncey

    Mar 5, 5:57 PM

    Eldonna, I can remember when the psychiatrist asked me "Why?" The first thing that popped into my head and at that very moment, with my husband so ill, I said that I was selfish, that we had been married for 45 years and I wanted him to be able to live, really live, his life again.
    The eloquence with your piece puts into words how we as donors really feel. Thankyou.
    I would love to be able to share this.

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    • Eldonna Edwards

      Mar 5, 6:00 PM

      Thank you, Maureen. You are such an inspiration to those who think they are "too old" to donate. Bless you both. <3

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  • Audrey

    Mar 5, 5:26 PM

    This is a very good reflection of how most of us felt about our donation. However, I'd like to point out that those of us who donated to loved one or a friend should be included in this. It's not an easy decision and you get a lot of the same flack even when people assume you are donating to someone you care about. It's an altruistic decision regardless.

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    • Eldonna Edwards

      Mar 5, 5:59 PM

      Thank you for your comment Audrey. This essay is a reflection of my personal experience as a non-directed donor however I agree that all living donors are offering a huge gift, regardless of whether or not they know their recipient.

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  • Bonita

    Mar 5, 5:13 PM

    Thank you for saying what I can't explain to people.

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    • Eldonna Edwards

      Mar 5, 6:01 PM

      Thank you for your comment and for being a living light on someone's path, Bonita. <3

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  • Jeff States

    Mar 5, 5:10 PM

    Why would someone donate a kidney to someone they don't know? How about it's simply the right thing to do. With more than 100,000 people on the kidney waiting list and only 16,000 kidney transplantations performed last year, people need to step up! 13 people die every day waiting for the call that a kidney has been found for them. The death rate for a kidney donor is 1.5 deaths per 10,000 surgeries. In other words, it is much more dangerous to ride a bike, train or bus, be attacked by a shark or be struck by lightening. I am slightly prejudiced because I too am a kidney donor. Good for you Eldonna. Good for you.

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    • Eldonna Edwards

      Mar 5, 6:03 PM

      Thank you from another senior donor. I thought I was an "older" donor at 51 until I learned about Maureen donating at 65 and you at 72. Every surgery comes with risks but you're right, we never know what tomorrow brings so why not make a difference if you can?

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      • Jeff States

        Mar 5, 6:22 PM

        Indeed, why not!!!

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    • Gale Schulke, RN

      Mar 5, 5:51 PM

      All of you are my heroes, and heroes to the people you donated to. I wish I could be a donor, but the fact is I have all of the risk factors for kidney failure, so may need one myself one day.

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      • Eldonna Edwards

        Mar 5, 6:06 PM

        Thank you for your comments, Gale. We all do what we can ion the way that we are able. As a nurse, I suspect you are a hero to someone every single day.

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  • Gale Schulke

    Mar 5, 4:33 PM

    I have met a few people who have donated to perfect strangers. It is truly a gift of life. My brother was the donor for our father. He has never had a single day of regret.

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    • Eldonna Edwards

      Mar 5, 6:05 PM

      Gale nearly every donor I meet on my book and speaking tours says the same thing as your brother. We donors feel like we're the ones who received the greatest gift.

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