Happy Ten Year Kidney-versary to us!
Psalms 47:1 Clap your hands, all peoples! Shout to God with loud songs of joy! Oh, the joy of it! Ten years ago today, I felt incredible joy – yes, in my soul – but also in my kidney! I remember how I pushed my IV pole into my sister JoAnn’s hospital room. She was propped up in bed with a tube still in her nose, color in her cheeks, sparkle in her eyes, and her beautiful smile. Radiant joy! I’ve often said it was her hair that caught my eye. If hair can come to life – lustrous, shiny, glistening hair, that’s what her hair did. The healthy sheen of hair speaks to me, saying, “the kidney is working, Alleluia! It is performing its miracle we call life.” A doubting Thomas or a snide, skeptical person could attribute the giddiness, the soaring, rocketing joy I felt to the anesthesia I had only hours earlier. Yes, it was the miracle of modern science and transplantation to remove a healthy kidney and place it into another person- someone with diseased kidneys. An unbeliever would say it was not angels or miracles. Aah, I feel sorrow for the doubters! The miracle of life, the gift of faith from my ancestors, the lessons of courage they taught me, and the power of prayer and what it can do was the greatest lesson I experienced ten years ago today. Blessedly it changed my sister’s life, just as our mother and other sister’s lives were changed by the magic of organ donation. But, for me, the whiniest, most terrified and reluctant donor on the face of the earth, it transformed my life. I never would’ve been able to do it without the support of St.William, my beautiful daughters, family and the best friends a woman could ever have. I live now with a feeling of gratitude and am ashamed I didn’t always. My sister, JoAnn, untethered to a dialysis machine to keep her alive, is doing well. She danced at both of her daughter’s weddings and met her new baby grandson on the day he was born. The joy brings the gratitude, but the gratitude brings a sense of duty or a calling to me. I am embarrassed to be called a hero. I dislike it so much as do many of the living donors I’ve met. I know (and you know) I would never have been a living kidney donor in a zillion years if I wasn’t lucky enough to be born into such a magnificent family. A family with lousy kidneys caused by polycystic kidney disease (PKD). There is much work to be done. I want to tell the world about PKD, to find a cure, and try to bring hope! I have family battling PKD now. I have friends battling it. One just became a grandmother. A young mother, a father, a teenager (she’s a princess of a girl), and a gorgeous grandmother all stunned by the unfairness of a mutation. There are strangers with PKD I’ve never met who have become friends. I want to cover my ears and cry when I hear about transplants that failed, donors who have lost their recipient, or about someone who doesn’t have a donor. They spur me to work. It frustrates me to hear about another fistula being put in another arm (two within one week in one family) and yet my heart knows dialysis is a lifesaver. I want to wave a magic wand to stop the relentlessness PKD makes into lives – back pain and flank pain, nausea and vomiting, diverticulitis, aneurysms,...
Read More“Never Cut What You Can Untie”
If you get a knot in your necklace, most of us don’t cut it. The necklace would be ruined. Many times I get frustrated at knots in plastic bags and then I do reach for the scissors. But I think Josephy Joubert’s quote, an essayist in the 18th century, was about relationships. It’s a great quote for quarreling families. It’s a great quote for troubled friendships. And, it’s a great quote for everyone. Hurt feelings, heartaches, and arguments with people you love can lead to knots. Things escalate. People stop talking to each other. Time goes by. Revenge, bitterness and isolation result in broken relationships that seem like they can never be mended. I called a good friend of mine yesterday, who was celebrating her 80th birthday. Reflecting on her life, my friend said her sister-in-law once told her something she never forgot, “Hurt feelings are a waste of time!” It made an impact on my friend because she realized there was a lot of truth to it. I am blessed with good friends. Once when I was struggling with hurt feelings, another friend of mine suggested I draw a line in the sand and step over the line. Once I stepped over the line, I could leave all of the heartache behind me and never pick it up again. He also told me I could gulp a shot of good Irish whiskey if I needed it to step over the line. Holding grudges was something my mother never did. She used to say when you did that you were only hurting yourself, “Life is too short to waste it.” I wonder now if it was because she was a teenager when her mother died. Mom saw a lot of people she loved die of polycystic kidney disease (PKD) before dialysis and transplantation and before Mom began her battle with PKD. Maybe that’s why she was so wise. Estrangement from someone you love reminds me of another quote. “Be careful what road you’re traveling down, you might get there.” Completely alone. Life – it is precious, short and absolutely Divine. It is powerful to take responsibility for your feelings. Incredible courage is required to forgive and live. It’s not for wimps. By the way, I didn’t gulp a shot of whiskey when I stepped over that line in the sand. With alcoholism rampant among the Irish, I didn’t need more problems. But, I did let it...
Read MoreHappy Birthday to my baby sister, Janice!
Happy Birthday to my baby sister, Janice. Despite being the youngest of my sisters, Janice is much taller than me. And, not just in height. She stands tall in handling what life dealt her: Polycystic Kidney Disease (PKD). Not once have I ever heard her ask, “Why me?” She never whines, complains, or has temper tantrums about the difficult things she has faced, the pain she has suffered, or the way PKD has affected her life. Ahem! The Reluctant Donor has taken note of this fact. PKD does affect Janice’s life with all its annoying nasty facts. Janice, though, carries on and points out the ways PKD has made her stronger. Yes, she’s had great teachers, as I outlined in my book, The Reluctant Donor. But, Janice stands just as tall and just as strong as those who have taught her how to not let PKD win. Her successful kidney transplant almost twenty – yep twenty! – years ago have given her years we may not have had. We will be forever grateful for her anonymous donor and want to scream and shout about the tremendous gift it is. But, there are many hardships no one quite understand with a transplant that long ago. A whole caboodle of issues Janice battles with her quiet way of never whining. As our friend and fellow PKD fighter, Patti Ruffin, points out, “A transplant is just a band-aid. We still have PKD disease.” Remember Patti Ruffin’s wise observation if you know someone with PKD, or someone with PKD and a transplant. But, most of all, learn from Janice’s grace. I...
Read More“You grow up the day you can have the first real laugh . . . at yourself.” Ethel Barrymore
One of the things I miss most about my mother is her deep belly laugh. She had a sort of gravely voice from her years of smoking. Many times when she answered the telephone, the person calling mistook her deep voice for a man. Instead of being insulted, she laughed it off, saying her voice was sexy like the movie star, Lauren Bacall or Marilyn Monroe. Mom never took herself too seriously. Unlike her very serious and worrywart daughter – my serious view of life exasperated her. Mom only had a high school education. She never thought of herself as an intellectual. One of her challenges was spelling, especially the word “coming”. “Suzie,” she asked, “how do you spell ‘coming’? Is it c-o-m-e-i-n-g or do I drop the ‘e’?” As a smart aleck teenager, I’d roll my eyes and spell it for her. That deep laugh of hers would boom across the room, and she’d laugh at herself and say, “Oh, that’s right! I remember now. ” Now that she’s gone, I realize my mother was smarter than many of the most educated people who have come across my path. She had great insight into life as she proved over and over again. When she died, we had two memorial services for her. One in Florida and one in Chicago and the number one comment people said to us was, “Your mother was so much fun!” or “Your mother made me laugh.” Her zest for life, her upbeat attitude, and her happiness despite much heartache, suffering and pain, are a tribute to her. As I get older, I marvel at how often she did laugh. It’s hard to laugh when the people you love die of kidney failure, or find joy when your kidneys fail, when you’re in pain and sick and need surgery and dialysis, or when your quad muscles snap and you’re bedridden for six months but you have to go to the dialysis center three days a week via ambulance. “No one wants to hear my woes,” she’d say through gritted teeth during the rough times. Not that she didn’t have her down moments when things were really bad, but there was something about her that always battled back from those times. She loved her father deeply and often mentioned how he recited, “I cried and cried because I had no shoes, until I met a man who had no feet.” That was how she dealt with dialysis. Her mother and one of her sisters didn’t have the gift of dialysis, so over and over again, when I’d visit her at the dialysis center during the ten years the dialysis machine kept her alive, I still remember her smiling up in delight when I arrived. Then her laugh would erupt from deep within her. “Don’t look so serious, Suzie, I’m so lucky to have dialysis available to me. Yep, I am one lucky woman. Now wipe that worried look off your face and...
Read MoreNBC Charlotte Today show
I’m getting ready for my appearance on NBC’s Charlotte Today show. While I commented and asked for input about what should I wear, I realize what I wear is not as important as what I say. I realize that while I fuss with my hair, my makeup, and my clothes someone will be reaching in their closet for comfortable clothes to wear for four hours as they sit in a chair at a dialysis clinic. Every single drop of the blood in their body will be filtered through the artificial kidney, aka dialysis machine, because their kidneys failed. All because of polycystic kidney disease. I realize today somewhere someone will be diagnosed with PKD and that someone might be the tenth family member of a family to be diagnosed. I realize they have experienced issues with the disease through another family member and they may be terrified. I realize today someone might be diagnosed with PKD who has never heard of polycystic kidney disease. It might be someone who has experienced a gene mutation. While I’m fiddling with my necklace, someone is wondering, “why me?” I realize today someone is heading to a hospital to have a fistula implanted ibecause kidney failure is imminent. I realize today someone is trying to decide if they can have the baby they dreamed and hoped for all their life, despite their polycystic kidneys. Someone else is worrying whether a new baby has inherited polycystic kidney disease. Someone else is worrying if they should put the strain of a pregnancy on their diseased kidneys. I realize while I worry how I will appear on camera and if I will speak clearly and coherently, someone is filled with pain caused by a cyst that burst. I realize today someone is weary and sad and fed up with the disease called Polycystic Kidney Disease. I realize that today I have an opportunity to explain what polycystic kidney disease does to families. I have an opportunity to ask others to help those of us affected by PKD, by being an organ donor, a volunteer or a friend. I have an opportunity to inspire a researcher somewhere, anywhere to be motivated to help find a cure for PKD. I realize that through my family’s stories of courage, faith and humor, I have an opportunity to bring hope to anyone discouraged about a disease called polycystic kidney disease (PKD). Because there definitely is...
Read MoreHappy You Went To Heaven Day, Mom!
by Suzanne Ruff How’s that for putting a spin on what I call this day? For me, it’s: My World Changed Never To Be The Same Day! Mom, you often talked to me, preparing me for your death and about Heaven. That’s one of the good things PKD does – surprising as that sounds! Because of you, I have no ambiguity about life and death. It’s part of what we humans endure whether we have PKD or not! There was no doubt you were going to heaven. No Darwin theories for you! Also, in that silly way of yours, you made sure I knew there was no way you were going to hell. “I’ve been there and I’m not going back,” was your firm statement. Your awe, reverence and respect for God was/is sincere. You served Him well. The essence of what made you who you were bubbled out of you. So I’m betting you made God smile, Mom, when you met Him. I giggled at your list of what you wanted to do in heaven. Did God answer all your questions? You were, of course, very excited to meet God. One of your first questions was to be: “Could I meet my donor? You wanted to buy that wonderful man a beer! Organ donors arrive at their celestial home with a “get into heaven free card!” When I give a speech about you, I explain that another question you wanted to ask God is, “God, why did you make mice?” Mice made you shudder, jump and run like a cartoon character. “Wouldn’t it be funny?” I ask the audience, “ if a mouse is how a cure for PKD is discovered?” Alas! Just like PKD is hereditary, so is that same reaction to mice in your granddaughter and me. Your zany sense of fun brought much laughter when you described greeting all your friends and loved ones in PKD Heaven. They would meet you at the pearly gate and oh how you believed you’d see them again! The things you would tell them regarding PKD and thank them for helping you with your PKD battle. The progress and availability of dialysis, transplantation, nutrition, blood pressure, and the new drugs will excite them. Tell them the first “Friends Chapter of PKD you and Dad helped form in Chicago has exploded to many Chapters. Support, love and new friends united together, supporting and loving each other. You had a few serious questions for the dear Lord (as you often called Him). Sad ones. There were some issues you wanted to discuss by asking, “What were You thinking, Lord?” We talked about how we will not know the answers while we are here on earth. That’s when you told me to let faith kick in. Thank you for this great lesson. And, of course, there was your love of movies. Naturally you believed in Movie Star Heaven. You couldn’t wait to ask, “Could my sister (our beloved Sister Mike) and I meet John Wayne?” You said you were going to be “mad as hell” if Sister Mike had already met him, but then your blue eyes twinkled saying, “Maybe it’s not good to get mad as hell in heaven?” I still wish I had been able to say good-bye to you . . . to say I love you one more time. I’ve matured enough to understand and trust that the dear Lord knew what was best for you when it was your day to meet Him. But, oh how I miss you, Mom! To this day, the doctors in...
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