Thank you, Dr. Perrone
Dr. Perrone is a nephrologist who specializes in PKD. His words about my book, The Reluctant Donor, mean so much to me. It means I honored those who went before me . . .the brave men and women who taught me courage. Here is what Dr. Perrone wrote: ‘The Reluctant Donor should be required reading for anybody who works with kidney disease patients, at any level. I provided this wonderful book with brand new nephrology physicians in training. They were profoundly moved. In the present era, we take dialysis and transplantation for granted, i.e., as routine medical procedures. It wasn’t always so. The integration of the incredible and courageous histories of members of the Ruff family, at a time when dialysis and transplantation were not standard medical procedures reminds of the progress we have made, but there is so much more to do. Highly recommended as required reading.’ Ronald D. Perrone, MD Nephrologist Tufts Medical Center...
Read MoreAdvice for Living Kidney Donors
I wrote the article on Page 8 of the AAKP magazine – Great advice for living kidney donors. http://cosmic-studio.us/aakp/magazine-id-44
Read MoreMembership in An Exclusive Club
It’s a club you don’t join. It just happens, and suddenly, you’re a member. The name of the club is: Daughters without Mothers Club and I am a member. Ever since I became a member, I play a silly game in my head. I wonder if my mother’s spirit has seeped into me. Then, boom! The wonder turns into absolute certainty. She’s within me! On this Mother’s Day, I wondered if it happens to other members of the club. Do other Daughters Without Mothers do something out of character urged on by their mother’s spirit??? So I though I’d ask! I’ll give you an example: My mom used to get exasperated that I always wore black and white. “Why not a little happy color?” she asked once, when I arrived with a suitcase full of clothes that were all black and white. Just after she died, I bought a multi-color jacket, almost like a quilt, with oodles of color! Bam! I could hear Mom cheering in heaven! I even wrote a story about it in a Chicken Soup for the Soul book about my coat of many colors. Every daughter on the planet knows the many stories and conflicts about the daughter/mother relationship. I spent my childhood, shy and embarrassed about my mother’s outgoing exuberance and unconventional ways. She was NOTHING like the other mothers. Luckily, I matured and understood she was the EXACT kind of mother God knew I would need. My mom taught me how to trust God in the darkest moments. For those of you who know us, these past few months, my family has dealt with major surgeries/health issues for three of us. Without Mom’s lessons on how to get through pain and suffering, I would’ve cracked. Her strength and spirit were within me. I met a woman who was in the Daughters without Mothers Club. She told me she never, ever wants to see her mother again – not in heaven or in hell. She never gave any details, but I thought it was one of the saddest things I ever heard anyone say. Because I was raised that I will see my mother again one day! I did ask the woman, though, if she was a mother herself. She wasn’t. Aah, right? All of you who have raised a child know: how do we take that little tiny baby and be perfect as their mother? We can’t! We just do the best we can. And, if you’re lucky like I am, you’re mother’s spirit will stay with you and your world will be full of color. If you’re in the Daughters without Mothers Club, tell me what happened when you just knew you’re mother’s spirit was within...
Read MoreJohn Wayne and a Dominican nun
I like to think John Wayne removed his big white cowboy hat, tipped it at her, and said in his dreamy voice, “Please to meet you, ma’am!” She would have fluttered her eyelashes at him the way she did each time she kissed the TV screen as he puckered up to kiss the leading lady (Maureen O’Hara) in his movies. Mom, my sisters and I collapsed in giggles. Up in heaven, Duke (John Wayne’s nickname) may have been confused meeting Sister Mike, not knowing the difference between a Dominican nun, and thought she was an angel. She was our angel. Sister Mike’s official name was Sister Michael Mary Dwyer (O’Dwyer in Ireland), OP (Order of Preachers), a Roman Catholic nun, a Sinsinawa Dominican. There was nothing pious or stern and intimidating about her. Sunshine and happiness oozed out of her and not just because I was a kid, adults adored her, too. She lit up a room with her sunny disposition and her kindness and love toward everyone in the room. My mother was about ten years younger than Sister Mike. When my mother was a child, Mom asked Sister Mike what her birthdate was. Sister Mike told Mom that her birthday was December 8 (her birthday was actually December 7) – December 8 in the Catholic Church is the Feast of the Immaculate Conception – and Sister Mike told Mom that she was another Immaculate Conception! See what I mean about the mischief within Sister Mike? I even have a letter Mom wrote to her mother asking if it was true! It wasn’t that either was irreverent – they both truly believed God has a sense of humor. They were two peas in a pod when they were together. Laughter, silliness and plain old fun . . . an amazing thing when you’re a child and your mother and aunt shed their adult ways encouraging my sisters and me to have fun right along with them. The best way to describe how we anticipated Sister Mike’s visits to us is think of the delight of the children in the movie Mary Poppins. Pure magic! Sister Mike brought that magic and love into our lives. Mom and Sister Mike had a crush on John Wayne, the actor and we did, too. Popcorn, staying up past our bedtime and swooning over him when he swept the leading lady into his big handsome arms made our hearts beat faster. We never missed one of his movies. John Way arrived in heaven years after Sister Mike died, but I’m betting she finagled with the good Lord so she could meet him as soon as he passed through those pearly gates. It made Mom mad. She wanted them to meet him together, but Mom wasn’t in heaven yet when John Wayne died. Mom had just picked up her cross battling the same disease that sent her eldest sister, Sister Mike, to heaven at the young age of forty-five years old. This year – 2016 – marks the 50th year since Sister Mike died. Today would have been Sister Mike’s 96th birthday. Her funeral was what I call my first PKD (polycystic kidney disease – a hereditary disease) funeral. I wasn’t born yet when my grandmother died of PKD. We’ve had nine funerals from PKD in our family including Mom’s. My sisters and three of my cousins, (one a Catholic priest) battle the disease now. Sometimes the sorrow is unbearable. One Christmas visit when I was quite young, Sister Mike brought us a Nativity set, made of plastic. Mom was beside herself with joy...
Read MoreThe 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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