Posts by Suzanne F. Ruff

A Valentine for Organ Donors and My Baby Sisters

Posted on Feb 14, 2019 in Polycystic Kidney Disease | 0 comments

A 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...

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Did you step on your mama’s heart?

Posted on May 13, 2018 in Polycystic Kidney Disease | 0 comments

Did 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  ...

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Thank you, Dr. Perrone

Posted on Apr 2, 2018 in A Donation Story, Family, Polycystic Kidney Disease, The Reluctant Donor Book | 0 comments

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...

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Advice for Living Kidney Donors

Posted on Jul 17, 2017 in Polycystic Kidney Disease | 0 comments

Advice 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

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Membership in An Exclusive Club

Posted on May 14, 2017 in Polycystic Kidney Disease | 0 comments

Membership 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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