Today is our 20 Year Kidney-versary!
My cup runneth over with gratitude today as my sister and I celebrate the 20th anniversary of our successful surgeries on October 19, 2004. One of my kidneys was removed to be placed in her abdomen to give her life, untethered to the dialysis machine keeping her alive. Dialysis, though, is a miracle of modern science, too. Our grandmother died before dialysis, just as it was being invented by Dr. Willem Kollf far away in the Netherlands. Sadly, doctors in Chicago had nothing to save her when her kidneys failed. Our mother was a teenager when our grandmother died. Five of my grandmother’s six children inherited the genetic disease, Polycystic Kidney Disease (PKD), that took the life of our grandmother. Years later dialysis saved our mother’s life and kept her alive for almost ten years until she was bless to receive a kidney transplant from a deceased donor. I am filled with joy and humility at the miracle of transplantation. How does the tiny Divine spark that we call life remain in the kidney and then do its magic and keep another person alive and free of dialysis? I marvel at the miracle of modern science. I kneel in gratitude to our Creator for the gift that life is. I was so frightened twenty years ago about the surgery. Never having had anesthesia, I was afraid I might die. I felt so alone. This was before social media. I was (and am) The Reluctant Donor. But, I went through with it and success! Oh, how happy I am to have witnessed my sister bloom with health! To see her dance at her daughters weddings, to be there for the birth of her grandchildren, to compete with our other sister at the Transplant Games and win a medal and to know how happy her life has been since that incredible day twenty years ago. There is risk involved in being a donor. There are not always happy outcomes, and I mourn for those who have not had the same joyous results as we have. Life is truly a mystery. More and more I believe that God’s plans for us are hard to understand and I sometimes have to struggle to trust in the Lord. But He tells us we won’t understand everything while we are here. Today, though, I won’t think – I’ll just rejoice!...
read moreAldo’s Army
https://gofund.me/5f4f9e90Aldo has been on dialysis for 21 years! That is truly difficult and a testament to his self-discipline and will to live. Aldo has worked full time while raising a family. Doctors have told him he is failing, Our church has united to help him find a kidney and to raise funds to support him and his family. Life . . . helping one another, loving one another.
read moreTrust in the Lord
Often when I worry, worry, worry as I am prone to do, my mother would say to me, “trust in the Lord.” Growing up in a religious family , I’ve heard that a million times. It sure is hard to do when times are tough. It’s lovely and almost easy to do when things are going smoothly, the day is beautiful, and life is good. It brings to mind the story of Thomas, the apostle who did not believe it when the other apostles told them, “We have seen the Lord!” Thomas had witnessed the death of Jesus on the cross and refused to believe them, saying, “Unless I see the nail marks in His hands and put my finger where his nail marks have been, and put my hands into His side, I will never believe.” That is one of my favorite stories, because as it is written, Jesus did appear later to Thomas – coming into a locked room no less! Thomas was able to see His nail marks and put his hand in the wound in the Lord’s side. I love that story. Thomas was so happy to see Jesus! Jesus even gave me a message that day: “Blessed are they who have not seen and yet believe.” I need to stop whining and worrying and just trust. Trust in the...
read more26 Years Post Transplant
My sister Janice wasn’t even forty-years old when she suffered renal failure. She knew it was coming . . . the end of life as she knew it. That’s what happens when you have a genetic disease in the family – you know what you’re in for . . . As she became sicker, she added her name to the transplant waiting list. Her kidney function had declined to dangerous levels. Back then – in 1995, there weren’t as many people’s names on the waiting list compared to today. There were not quite 37,000 names on the list compared to over 110,000 today. Hope was wearing thin. The doctors scheduled Janice to start dialysis on Wednesday, January 11, 1995. Somewhere a terrible tragedy occurred resulting in the death of a child the day before Janice was due to start dialysis. A child saved my sister – a child whose parents donated the child’s organs. I think of the child and the family often. Sorrow and our Joy intertwined. I will be forever...
read moreLiving Organ Donation Reimbursement Program
by Suzanne Ruff, AAKP Board of Directors Member Within families who battle kidney disease as my family does, there is a time for sorrow and a time for joy, a time for weeping and a time for dancing. For many of my family members with complete renal failure, organ donation is their only hope. Some because they had been on dialysis for many years, others because they did not want to be on dialysis. Pre-emptive transplantation (receiving a kidney transplant before dialysis) is recommended more and more. Finding a living donor is strongly encouraged, but it is not easy thing to ask of someone. On July 10, 2019, President Donald J. Trump signed an Executive Order on Advancing American Kidney Health. The American Association of Kidney Patients (AAKP) has also designated that this is the Decade of the KidneyTM. It is encouraging to know that kidney disease is being actively addressed and innovative solutions are implemented, including the elimination of roadblocks that might make finding a living donor easier. Hope is the quintessential weapon to battle kidney disease. As I read the Executive Order, it gives hope. One part of the order refers to the issues that greatly concern a potential living donor as they contemplate their decision to donate. Section 8 of the Executive Order reads as follows: Sec. 8. Supporting Living Organ Donors. Within 90 days of the date of this order, the Secretary shall propose a regulation to remove financial barriers to living organ donation. The regulation should expand the definition of allowable costs that can be reimbursed under the Reimbursement of Travel and Subsistence Expenses Incurred Toward Living Organ Donation program, raise the limit on the income of donors eligible for reimbursement under the program, allow reimbursement for lost-wage expenses, and provide for reimbursement of child-care and elder-care expenses. As of September 2020, the Living Organ Reimbursement Program is to expand the scope of qualified reimbursable expenses incurred by living organ donors to include lost wages, child-care, and elder- care expenses. We have had five living donors within our family of nine transplants (eight kidney transplants and one liver transplant) among eight different people. I am one of the five living kidney donors. I did not even consider the costs and hardships that a living donor incurs when my sister collapsed in critical condition from renal failure–a time for weeping. I am from a family that supports one another, both physically, emotionally, and financially when one of us is down and out. In 2004, there were no resources anyway. It’s been sixteen years since I became a living donor and my sister is healthy, happy, and thriving–a time for dancing. Fast forward to 2020. Six very short days ago, as I began to assemble information to write this article, my cousin’s son received a kidney from his cousin, a single mother with a ten-year-old child. Both are recovering and I asked them for their thoughts about the Living Organ Donation Reimbursement Program. Neither one of them had a clue that there was a program to help living donors! When I sent the information to my cousin’s son, the recipient, Christopher Burgess, his comment (succinctly given while recuperating) is as follows: “I think there is a flaw still in the law since it takes...
read moreA Valentine for Organ Donors and My Baby Sisters
I have two baby sisters. They’re both taller than me. Plus we are not babies . . . far from it. We are in our “golden years” now. No matter, they’re always my baby sisters. I’m blessed they’re here. Both of my sisters are transplant recipients. Life! The precious of all gifts. My youngest sister, Janice, the baby of the family has had a really, really, really tough time in the past year. Lots of suffering, pain, mountains to climb. Hospitals, rehab, doctors, outrageous ambulance bills, and insurance nightmares. (“‘If you like your doctor, you can keep your doctor” did not apply to her.) She made it through and is home now. It’s what Polycystic Kidney Disease (PKD) does . . . and seems to never stop doing. My baby sister Janice never complains and I mean never. Proof? She has said through gritted teeth, writhing in discomfort, a hospital gown tied around her pallid and gray skin, her long thin fingers grasping the bucket close . . . “better me than you.” Who does that? Who has the fortitude, love for another, and guts to say such things? Well . . .my other sister, JoAnn, the middle child, does that, too. Two women who have battled this disease with tremendous spunk, courage and are shining examples of grit and determination. The thing about Polycystic Kidney Disease (PKD) is that although both have received kidney transplants, they still have the disease. The transplant does not cure the disease. Which is why I write stuff like this . . . to push for a cure, to ask for prayers and love, and to educate. I’m not ungrateful! I do give thanks every day for the gifts of those transplants that give my ‘baby’ sisters life. But, now Janice’s name has been added to ‘the list’ – the waiting list – for a liver transplant – polycystic liver disease. It just makes me cry what this disease does to families. Many of you know that our three cousins – great guys- are also battling Polycystic Kidney Disease. Over 100,000 names on the list! Valentine’s Day is all about love. An organ donor is all about love. Love for your fellow...
read moreDid you step on your mama’s heart?
Did you step on your mama’s heart? I was a young mother. I didn’t know much. But, I knew the minute I held each of my children I was in love for life. When my youngest child was about a year old, a birdlike old woman, stooped and hunched over with a twisted wood cane approached us at church. With a dour look on her face, she pointed her ugly stick at my angelic looking baby girl and said in an unfriendly voice, “When they are little like her, they step on your toes; when they are older, they step on your hearts.” I remember I didn’t say anything, just sort of nodded and hurried away thinking. Hmmmph! Not this baby girl, she’s a little ray of sunshine. She’s cuddly and I love her so much and she’s a mama’s girl who will love me forever. Fifteen years later, I was at a restaurant with that same daughter who was then sixteen years old. At another table in the restaurant was an older friend of mine named Peggy. She introduced us to her ninety-year-old mother. Her mother had a head of white perfectly coiffed hair, a beautiful smile and a friendly face. We joked about it being Mother/Daughter Day. Peggy’s mother motioned me over with a twinkle in her eye and whispered, “When your children are little, they step on your toes, when they grow up, they step on your heart. Grow roses. Roses teach you the lesson: beautiful despite the thorns . . .like our children.” I grow roses. When I tend my roses, I often think about those two completely different ladies saying the same thing about children stepping on toes and hearts. The thorns on roses hurt! I shudder to think of the crown of thorns. Thorns make my arm and fingers bleed, but I can forgive the thorn when that fragrant, breathtakingly beautiful blossom blooms. The way God forgives us. Most everyone has stepped on their mama’s heart. Some children only tiptoe on their mother’s heart; others have not only stepped, but they have trampled on their mother’s heart. You’ve gotta have a really strong heart to be a mama. I often wonder about how many times I stepped on my mother’s heart. She’s in heaven now. Thankfully, she died knowing how much I loved her. I knew how much she loved me. Mom had saved my letters and cards, all tied together in a blue ribbon in her underwear drawer. In the margins of my letters, she wrote happy comments to me . . . knowing I wouldn’t see the comments until she died. She loved me despite the times I had stepped on her heart. My youngest child – who happened to be with me each time I had heard that expression – didn’t like me much when she was sixteen years old. When she was twenty-one years old, though, she wrote me a beautiful letter saying how glad she is that I’m her mother. What a gift! She’s my baby girl. Mothers know a lot . . . they love you unconditionally . . .and forgive you when you step on their heart. The same way God does. Happy Mother’s Day! by Suzanne Ruff ...
read moreThank 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...
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