A PKD mutation story by a powerhouse of a woman: Karyn Waxman
When people ask me to tell them about myself, I generally say that I am married to my soul mate, Jerry Waxman, I am the mother of two amazing daughters, Erica and Kim, “Grammy’ to our delightful granddaughter Eva, but I am also one of 12.5 million people who battles Polycystic Kidney Disease (PKD) every day. Karyn Waxman, PKD Foundation Memphis Chapter Coordinator Events Facebook Pinterest Linkedin Share to raise awareness. PKD – Polycystic Kidney Disease PKD took my life by storm fifteen years ago. While vacationing with my husband I developed a raging kidney infection that resulted in a lengthy hospital stay. The doctor who treated me, a family friend, told me that I had ‘funny looking kidneys that were not where they are supposed to be,’ but not to worry because ‘not everyone’s anatomically correct!’ His words resonated with me when the pain I was experiencing refused to ease up. When I complained about still experiencing pain and malaise three weeks after my release from the hospital, he told me that he believed I was fine, but that ‘we could look further.’ I insisted something was wrong and a CT scan was scheduled the following week. The test revealed numerous cysts, too many to count, completely covering and distorting my kidneys, liver, and ovaries……I was diagnosed with ‘text book’ PKD. Having never heard of PKD before I was frightened and frantically began a thorough Google search to learn I all could about a disease that could potentially challenge my life. I quickly discovered that PKD is one of the world’s most common dominant genetic life threatening diseases known to man. It is an equal opportunity disease and affects men, women, and children of all ages as well as people of all ethnicities. PKD causes cysts, or small sacs of fluid, to develop on, in, and throughout the kidneys forcing them to enlarge and ultimately lose their ability to adequately filter toxins from the blood stream. In fact, polycystic kidneys can grow to be as large as footballs and weigh as much as 30 lbs. each! Symptoms of PKD include chronic pain in the back, sides, and abdomen, chronic urinary tract infections, distended abdomen, kidney stones, blood in the urine, high blood pressure, and family history of kidney disease. PKD is the 4th leading cause of kidney failure with nearly 60% of its victims requiring dialysis or transplant to survive. PKD patients are also at a high risk for developing cardiovascular disease as well as intracranial aneurysms. Sadly, there is currently no known treatment or cure for PKD. While dialysis and transplant are reasonable treatments for kidney failure, neither options stop the pain and suffering that are associated with this disease. While digesting all of the ugly facts about PKD, a pivotal moment for me came with the understanding that neither of my parents had PKD and yet I had developed it as a result of spontaneous genetic mutation. Because PKD is a dominant genetic disorder, this meant there was still a 50% chance that I had inadvertently passed it onto one or both of our daughters. Knowing that I might have given our girls a potentially life threatening disease was torturous for me, and extremely difficult for my husband. After all, what if all the women in his...
read moreThe Word ‘Cadaver’
Yesterday, on ABC’s The Bachelor TV show, an insensitive comment was used about a ‘cadaver’ donor. The word “cadaver” should not have been used. Many donor families – people with a family member who died and donated his or her organs after death – are upset at the use of the word ‘cadaver’. Because each family’s loved one was a person, loved and cherished, and not just a dead body. Many donor families are outraged. My mother received her transplant in 1988 and the word ‘cadaver’ was used. That was the word used by the medical community back then to indicate the organ transplanted was from a deceased person. Later, it was considered insensitive. Mom stopped using the word “cadaver” too, although any donor who has received a transplant never thinks of their donor as a ‘cadaver’ or a dead person. They think of them as their angel. Mom’s donor was the first person she wanted to meet in heaven after she paid her respects to God. Words. Yes, words can hurt. But, let’s not get hung up on words. Why not get hung up on the fact that over 120,000 people are waiting for a life-saving organ transplant? To be an organ donor in the event of sudden or unexpected death is one of the noblest things anyone can do for their fellow man. Become an organ donor! I promise someone will call you an...
read moreChristmas 2014
It’s been a banner year for The Reluctant Donor. A fourth printing – and the opportunities to tell the world about my mother and her siblings – has been very humbling, exciting, and special. The love they gave me is the greatest of all gifts. So much is happening and has happened in the treatment of kidney disease, that I know they would be astounded. Back to my grandmother’s days when she began kidney failure in the 1940’s, progress has been made. Told there was nothing more the doctors could do for my grandmother and her failing kidneys, to the invention of a dialysis machine, , to transplanting organs from one person to another, to paired exchange organ transplants, to new ways of dialyzing without having to sit still, and to possibly building and creating new kidneys in a lab. Sadly, if you are suffering and in pain today, that is not enough. Because kidney disease still has a long way to go. If The Reluctant Donor can somehow bring peace and hope and joy and laughter to someone suffering today through the courageous stories of those who went before them, I will feel as though I am helping a bit. The spark of life that we all carry within us as we live and breathe is divine. It’s such a mystery, this life we live. The magic of it, the power of it, the beauty and the pain and sorrow of it; I don’t pretend to know the why of it. But, I believe it is the greatest gift. What we do with this gift of life is up to each of us. I took life for granted in my younger years. It has been the greatest and best gift I’ve ever received despite pain and sadness. As I grow older and as I celebrate another Christmas with all the mysteries, wonder and fascination of the story of Mary, Joseph and the baby Jesus, I marvel. A baby was born....
read moreThe Great Unifier for Congress
I have often said that organ donation is the great unifier. I’ve said it on Capitol Hill when I visited my Senators and Representative offices to voice my opinions on issues that affect kidney patients and organ donation. The elections might be over and you can breathe a sigh of relief because the millions of dollars spent on campaigns will stop! But, roll up your sleeves and get to work. I mean you, not them . . . find out who your Senators and Representatives are. Get their contact information. Then, remember this critical fact: They work for you. Reach out to them. Extend respect, common sense and professional courtesy, because you can make a difference. Why? Because if you are a kidney patient or have a loved one affected by kidney disease, or are part of the organ donation community, it is time to tell your story to your elected official. Life can change in an instant. You can become part of this community suddenly. Maybe you have lost a loved one and donated his or her organs so someone else can live. Your sorrow is someone’s joy. You and our family exemplify the Golden Rule. Your example can help our elected officials learn it is time to work together for the good of the United States of America. Maybe you have received a transplant? Maybe you are someone who needs a transplant? Either from a living donor or a deceased donor, it doesn’t matter. You are unique because you will probably be able to tell your elected official you didn’t or don’t care if your donor was a Democrat, a Republican, or an Independent. See what I mean? If you or someone you love needs a life-saving organ transplant, it doesn’t matter who donates. Organ donation is the great unifier. There are serious issues regarding organ donation Congress needs to address. The laws regarding the prescription drugs needed to keep a transplanted organ from rejection were written long ago and need to be addressed.It doesn’t make sense for someone to lose a transplanted organ because they cannot afford the medication needed to keep that organ. Medicare covers dialysis, an artificial kidney – and for anyone who has read my book, The Reluctant Donor, you’ll understand why I thank God every day anyone with failing kidneys has this resource. My heart still aches. A year of dialysis costs far more than the prescription drugs to keep a transplanted kidney from rejecting. And, if a patient loses a transplanted kidney, that patient will need another transplant, which costs four to five more times the cost of the drugs! Bring these issues along with your personal story to your elected officials. Be respectful, have your facts, and think about solutions. Let your voice be heard because all things are possible if we work together. A living kidney donor saves our federal government millions of dollars keeping the recipient off of dialysis. An organ transplant recipient, whether the organ was from a living or a deceased donor, becomes a contributing member of society. Along with their new health, most recipients are filled with so much gratitude their cup overflows . . . whether or not the donor was a Democrat, Republican or Independent....
read moreHappy 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...
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 moreJune 19, 1966
June 19, 1966 Peering out the Venetian blinds at my aunt’s house, I saw the car pull up to the curb. “She’s here!” I yelled as I ran out the door. My beautiful mother, tall, strong and bronzed by days on the golf course, stepped out of the car into the warm June morning. Jutting her chin out, she pulled her shoulders back, as if to stand at attention. We ran to her, my sisters behind me. “She’s gone,” Mom stated, opening her arms for us to nestle. Despite squeezing her eyes shut, tears trickled out of the corners of Mom’s cornflower blue eyes. Impatiently, she wiped them away and stated, “She’s out of pain. And, what a happy day it must be in heaven when she arrived.” The roses were in bloom. I could smell their heady fragrance. Birds chirped, sunlight dazzled, and the June day burst around us with indescribable joy, despite our broken hearts. Our sobs hiccupped loudly, and Mom’s voice quivered, “Now, now! Come on! She wouldn’t want us moping around. We have to go on and you girls have to make her proud.” Mom hugged us again. Our tears continued to drop while Mom described what was going on in heaven. “She’s having fun up there, meeting God, the saints and the angels, and Mother and Dad. She’s probably making those silly faces of hers. Didn’t she teach us how to make silly faces when we are sad? That’s how we honor her.” My mother set aside her own shattered heart to teach us how to handle grief. Standing on the curb on a side street in the bustling city of Chicago forty-eight years ago, the torch in the battle against PKD was handed to us. We have tried to make her proud. Mom, JoAnn and Janice have knocked it out of the park with the way they have handled PKD. Their fortitude, strength and courage are stellar. None of it could have been done without the faith she taught us. Ironclad faith. Rest in peace, Sister...
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