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Advice for Living Kidney Donors

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

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

  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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John Wayne and a Dominican nun

Posted by on Dec 8, 2016 in Family, Fundraising, Polycystic Kidney Disease, Reflections | 0 comments

John 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...

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The Regretful Donor and The Reluctant Donor

Posted by on Oct 4, 2016 in Polycystic Kidney Disease | 1 comment

The 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...

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It’s all about kidneys!

Posted by on Jun 21, 2016 in Polycystic Kidney Disease | 0 comments

http://www.kidneypreparenow.org/blog/category/all

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Fair is Fair

Posted by on Feb 22, 2016 in Polycystic Kidney Disease | 0 comments

Fair is Fair

“The happiest people don’t worry too much about whether life is fair or not, they just get on with it.” ~ Andrew Matthews ~ All of my life, I have become indignant when things are not fair. But, life isn’t fair, is it? I was a shy kid and a follower of rules, so much so that my free-spirited mother used to wonder if I was really her child. I didn’t have her mischievous spunk! When a teacher assigned the class extra homework or canceled a privilege because one disobedient kid misbehaved, it frustrated me that the whole class was punished. But, I did the extra homework and learned to love to learn! Recently, I was in Colorado to help with our daughter’s surgery. The doctor handed me a prescription for her. “Can you call it in to the pharmacy so it will be ready when I pick it up?” I asked. “No, the state of Colorado won’t allow it. Too many people were calling in fake prescriptions.” A few bad apples ruined it for the law-abiding citizens. But, what could I do? I gave thanks for the medicine and grocery shopped while I waited to pick it up. 60 Minutes, the television show exposed Medicare fraud and then did a follow-up story about the exact same story two years later. The fraud had not been corrected. That makes me mad and it’s certainly not fair to the taxpayers. What can I do? I can be sure all Medicare payments/charges are correct in my world. In the world of transplantation, I often hear people talk about fairness and unfairness regarding the “waiting list.” The waiting list contains the names of those people waiting for a life-saving transplant. There is much false information out there, some say movie stars become first on the list (they don’t), or that athletes, billionaires have an edge (they don’t), along with other myths about how the waiting list works. What can I do? Speak up, learn, and read more about the truth at UNOS (the United Network of Organ Sharing) website. https://www.unos.org If you have a loved one on the list, as I had in the past and have now, or perhaps your name is on the list, don’t get discouraged. Tell your story to anyone and everyone. Dig deep and find your faith. Devote yourself to helping find cures and teach others how to live a healthy life to prevent the advance of some diseases, raise awareness to encourage people to become organ donors, and share about the miracle of transplantation. Most of all, give thanks for the gift of each day, each hour, each minute. As we all should . . . because whether life is fair or not, it’s a...

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At War with a Family Member? Try a Caress This Year!

Posted by on Nov 26, 2015 in Family, Polycystic Kidney Disease | 0 comments

At War with a Family Member? Try a Caress This Year!

Family!  Have you noticed the roll of eyes, the grimace and the exasperation we’ve all used at times when “family” is discussed?  Other comments include phrases like ‘we can’t live with them; we can’t live without them!’ or the very very impolite phrase ‘You can pick your friends, you can pick your nose, but you can’t pick your relatives!’ We’ve all heard the moans and groans when the word ‘family’ is mentioned. The saddest thing to happen within a family is when years go be with family members in a “war” over an issue.  Whether it occurred over “a big issue” or something minor is irrelevant.  A big issue to someone might be minor to the other person.  Feelings were hurt, ugly things were said, appalling behavior was displayed.  Distortions, lies, and facts become uglier as time goes by.  People not involved in the “war” are uncomfortable and don’t want to be drawn into taking sides.  Holidays, anniversaries, celebrations go by. Pope Francis said the secret to healing wounds among family members is to “not end the day in war” and to forgive one another.  Ah! Forgive one another.  Forgiveness – giving it, receiving it, or even trying it.  Ah, how hard it is.  What Pope Francis told the crowd in this weekly audience on November 4, was pure genius:  In order to forgive, Pope Francis said, “you don’t need to make a great speech; a caress is sufficient and it’s all over: But, do not end the day in war. Understood?” The Catholic Church will begin the Year of Mercy on December 8 and the Pope pointed out, “to rediscover the treasure of mutual forgiveness.” Let us pray so that families may always be more capable of living and building concrete paths of reconciliation, where no one feels abandoned by the weight of their trespasses.” Have a heart and give a caress!...

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National Donor Sabbath

Posted by on Nov 4, 2015 in Polycystic Kidney Disease | 2 comments

National Donor Sabbath

Two weekends before Thanksgiving is National Donor Sabbath.  This year it is November 13-15, 2015. This three-day observance seeks to include the days of worship for major religions practiced in the United States and to show that major religions support and approve of organ donation. This is the time of year for family gatherings!  Years fly by!  Family gatherings can be stressful or peaceful depending on each person’s attitude.  It always seems to me that once I start counting my blessings, my attitude changes.  Change your attitude and your life changes! Being together is a great opportunity for everyone to talk about what they’re thankful for in their lives.  Give everyone a pen and a piece of paper and ask them to write down what fills them with gratitude.  Put the pieces of paper in a basket and have someone pick another’s gratitude. Then ask the person who selected the gratitude to interview the person who wrote it, asking questions and bringing out their gratitude. It’s fun! Some of the gratitudes will be funny and some will be serious. Because my family has so many transplant recipients, one of the “gratitudes” is always for the donor who has given them life.  The fact that a complete stranger died so they could live is impossible to put into words.  But, we always try. Most families that gather together will remember a missing family member who has died.  Bittersweet!  There may be tears, laughter. Sorrow and joy – that’s what organ donation and life have in common.  It’s a good time to discuss everyone’s thoughts and wishes regarding what they would like done in the event of a sudden or unexpected death.  It’s a good time to discuss both life and death, as hard as that may be. Being together makes it a good day!  Because life is fragile, a gift! It is to be...

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My cousin Jim . . .

Posted by on Sep 9, 2015 in Polycystic Kidney Disease | 0 comments

My cousin Jim . . .

On my Mom’s first day of dialysis, she prayed. Then, being the Irish Catholic that she was, Mom checked her church calendar to see which feast day it was. The calendar said it was the feast of St. Bridget and Mom said, “An Irish Saint! Glory be to God!” Actually, it was the feast day of St. Bridget of Sweden, but Mom didn’t know that and confused it with St. Brigid – one of the patron saints of Ireland and nuns. No matter! Whether it was an Irish saint, St. Brigid of Kildare, or a Swedish saint, St. Bridget, angels watched over Mom during those years. Mom named her fistula, “Bridie.” From that day on and for the ten years dialysis kept Mom alive, the grandchildren petted it and said it purred “like a kitty cat.” Today Mom’s nephew, one of the newborn twins I mention in my book, The Reluctant Donor, begins his first day of dialysis. (See why I wrote The Reluctant Donor?? Polycystic kidney disease goes on and on and on … and not many people know about it.) When the twins were born (over 50 years ago) into a household of six children, Mom went to help her sister, Aunt Mary Jane, with the new babies. Now my twin cousins are grown up with families of their own. Today I’m praying for Jim as he begins dialysis, of course. When I get sick of fundraising for a cure, I shake it off because we can’t quit. I also looked to see who the Saint of the day is today. It’s St. Peter Claver, a Spanish Jesuit priest, who left Spain to minister to the inhumane treatment of slaves and to bring attention to the wrongness of it. His kindness, sense of what is right, and compassion toward others is beyond humbling. St. Peter is a good saint to watch over my cousin, Jim, as he takes up his cross in the fight against polycystic kidney disease (PKD). Jim is a fireman and a great family man. I’m pretty sure, too, St. Peter will have a staff of lady angels named Mary Jane, Sister Mike, and Joan watching over...

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Celebrity Organ Donors

Posted by on Aug 27, 2015 in Polycystic Kidney Disease | 0 comments

Celebrity Organ Donors

It’s always helpful and humbling to families like mine when a celebrity is an organ donor. It brings awareness to the public of this great noble gesture.  Because to be an organ donor is the greatest thing you can do for your fellow man in the event of a sudden or unexpected death. Most of us have heard or met someone with a Cinderella story, especially in novels, who have a rich uncle that left them a fortune.  Maybe it’s a million dollars in cash, or a big fancy castle, or a piece of jewelry so rare and exotic that their life is changed forever with this lucky windfall. It doesn’t even compare to the way a person (and their loved ones) who have been on the waiting list for a life-saving organ transplant feels when they receive a call that a “match” has been found.  A “match” that can save their life.  I’ve done an Irish jig when my mother and then my sister received such a call.  You can’t even imagine the gift it is! But, the point is:  Anyone who is an organ donor is a...

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