The Regretful Donor and The Reluctant Donor
As another living donor, I, too, have often had some of the same thoughts and worries as Michael Poulson, the regretful living donor, soon-to-be physician. He regrets his decision, at age 18, to donate his kidney to his stepfather’s brother. His story was featured in the Washington Post October 2, 2016. https://www.washingtonpost.com/national/health-science/at-18-years-old-he-donated-a-kidney-now-he-regrets-it/2016/09/30/cc9407d8-5ff9-11e6-8e45-477372e89d78_story.html#comments I call myself The Reluctant Donor. Do I regret my decision to have become a living donor to my sister twelve years ago? Not every day, but maybe on some days, when my faith falters. The question, though, is would I do it again if I could go back in time, right? I was a much older living donor than Michael was at the time of his donation. Although I danced through my life in excellent health, many of the people around me – people I loved most – suffered from rotten kidneys. When one of my sister’s collapsed in renal failure, I knew she faced a six to eight year wait for a transplant – because the number of people listed on the UNOS waiting list for a kidney had exploded. I blurted out that I would give her one of my kidneys and immediately regretted saying it. I was terrified of surgery, of possibly dying, and having a part of me cut out and removed. I would never have done it without witnessing first hand the pain and heartache kidney disease causes. I hunted and researched for long-term studies on living donors. In 2004, I could not find much of anything. But, I trusted I was doing the right thing. A hereditary disease called polycystic kidney disease has ravaged my family. My grandmother died of kidney disease when my mother was a teenager. Then my mother lost four siblings to kidney disease. One of her sisters and Mom were both in renal failure at the same time. Sadly, that sister died after five months on dialysis. Mom spent ten years on dialysis. She used to say she was “lucky” because medical advances helped her live. She put her name on the transplant waiting list and after two years received a kidney transplant from a deceased donor. But the joy was short-lived. Mom’s daughter, my youngest sister, was in renal failure then. She also received a kidney transplant from deceased donor. That’s why I donated one of my kidneys to my other sister when she was in renal failure later. It was scary. Michael Poulson never mentions the awe and wonder involved in saving another person’s life. The miracle of life itself and the giving of oneself are very powerful. I have harped and lectured for more long-term studies and data regarding outcomes for all living donors and am repeatedly told the cost is prohibitive. Why? Living donors save Medicare millions of dollars keeping patients off dialysis; many recipients return to their jobs and contribute to society. I’ve spoken to my elected leaders for the Living Donor Protection Act to be passed. I’ve met and spoken to many living donors. One comment often heard is: After we become donors, when we do have a medical issue of our own, in the back of our minds is a nagging concern and worry that it is because we gave away one of our kidneys. There is the risk of our blood pressure running higher because we donated a kidney. It rises as we age, too, so it is critical to know these facts. Risk of hernia is another risk for living donors. Living donors are now cautioned not to use NSAID’s after donation. A difficult cross to bear for life if...
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Fair is Fair
“The happiest people don’t worry too much about whether life is fair or not, they just get on with it.” ~ Andrew Matthews ~ All of my life, I have become indignant when things are not fair. But, life isn’t fair, is it? I was a shy kid and a follower of rules, so much so that my free-spirited mother used to wonder if I was really her child. I didn’t have her mischievous spunk! When a teacher assigned the class extra homework or canceled a privilege because one disobedient kid misbehaved, it frustrated me that the whole class was punished. But, I did the extra homework and learned to love to learn! Recently, I was in Colorado to help with our daughter’s surgery. The doctor handed me a prescription for her. “Can you call it in to the pharmacy so it will be ready when I pick it up?” I asked. “No, the state of Colorado won’t allow it. Too many people were calling in fake prescriptions.” A few bad apples ruined it for the law-abiding citizens. But, what could I do? I gave thanks for the medicine and grocery shopped while I waited to pick it up. 60 Minutes, the television show exposed Medicare fraud and then did a follow-up story about the exact same story two years later. The fraud had not been corrected. That makes me mad and it’s certainly not fair to the taxpayers. What can I do? I can be sure all Medicare payments/charges are correct in my world. In the world of transplantation, I often hear people talk about fairness and unfairness regarding the “waiting list.” The waiting list contains the names of those people waiting for a life-saving transplant. There is much false information out there, some say movie stars become first on the list (they don’t), or that athletes, billionaires have an edge (they don’t), along with other myths about how the waiting list works. What can I do? Speak up, learn, and read more about the truth at UNOS (the United Network of Organ Sharing) website. https://www.unos.org If you have a loved one on the list, as I had in the past and have now, or perhaps your name is on the list, don’t get discouraged. Tell your story to anyone and everyone. Dig deep and find your faith. Devote yourself to helping find cures and teach others how to live a healthy life to prevent the advance of some diseases, raise awareness to encourage people to become organ donors, and share about the miracle of transplantation. Most of all, give thanks for the gift of each day, each hour, each minute. As we all should . . . because whether life is fair or not, it’s a...
Read MoreAt War with a Family Member? Try a Caress This Year!
Family! Have you noticed the roll of eyes, the grimace and the exasperation we’ve all used at times when “family” is discussed? Other comments include phrases like ‘we can’t live with them; we can’t live without them!’ or the very very impolite phrase ‘You can pick your friends, you can pick your nose, but you can’t pick your relatives!’ We’ve all heard the moans and groans when the word ‘family’ is mentioned. The saddest thing to happen within a family is when years go be with family members in a “war” over an issue. Whether it occurred over “a big issue” or something minor is irrelevant. A big issue to someone might be minor to the other person. Feelings were hurt, ugly things were said, appalling behavior was displayed. Distortions, lies, and facts become uglier as time goes by. People not involved in the “war” are uncomfortable and don’t want to be drawn into taking sides. Holidays, anniversaries, celebrations go by. Pope Francis said the secret to healing wounds among family members is to “not end the day in war” and to forgive one another. Ah! Forgive one another. Forgiveness – giving it, receiving it, or even trying it. Ah, how hard it is. What Pope Francis told the crowd in this weekly audience on November 4, was pure genius: In order to forgive, Pope Francis said, “you don’t need to make a great speech; a caress is sufficient and it’s all over: But, do not end the day in war. Understood?” The Catholic Church will begin the Year of Mercy on December 8 and the Pope pointed out, “to rediscover the treasure of mutual forgiveness.” Let us pray so that families may always be more capable of living and building concrete paths of reconciliation, where no one feels abandoned by the weight of their trespasses.” Have a heart and give a caress!...
Read MoreNational Donor Sabbath
Two weekends before Thanksgiving is National Donor Sabbath. This year it is November 13-15, 2015. This three-day observance seeks to include the days of worship for major religions practiced in the United States and to show that major religions support and approve of organ donation. This is the time of year for family gatherings! Years fly by! Family gatherings can be stressful or peaceful depending on each person’s attitude. It always seems to me that once I start counting my blessings, my attitude changes. Change your attitude and your life changes! Being together is a great opportunity for everyone to talk about what they’re thankful for in their lives. Give everyone a pen and a piece of paper and ask them to write down what fills them with gratitude. Put the pieces of paper in a basket and have someone pick another’s gratitude. Then ask the person who selected the gratitude to interview the person who wrote it, asking questions and bringing out their gratitude. It’s fun! Some of the gratitudes will be funny and some will be serious. Because my family has so many transplant recipients, one of the “gratitudes” is always for the donor who has given them life. The fact that a complete stranger died so they could live is impossible to put into words. But, we always try. Most families that gather together will remember a missing family member who has died. Bittersweet! There may be tears, laughter. Sorrow and joy – that’s what organ donation and life have in common. It’s a good time to discuss everyone’s thoughts and wishes regarding what they would like done in the event of a sudden or unexpected death. It’s a good time to discuss both life and death, as hard as that may be. Being together makes it a good day! Because life is fragile, a gift! It is to be...
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