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...
Read MoreJohn 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 PKD in our family including Mom’s. My sisters and three of my cousins, (one a Catholic priest) battle the disease now. Sometimes the sorrow is unbearable. One Christmas visit when I was quite young, Sister Mike brought us a Nativity set, made of plastic. Mom was beside herself with joy...
Read MoreAt 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!...
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 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...
Read MoreWho woulda thunk it? Me at a Super Bowl game!
Super Bowl frenzy time! The very lucky Reluctant Donor attended Super Bowl XX. The story behind it shows the grit, generous nature and fun-loving spirit my mother possessed. My Dad is and always was a diehard Chicago Bears fan. Dad and his buddies had season tickets to the Chicago Bears for almost 50 years. When Mom married him, in her infinite wisdom, she used to say to us, his daughters, “Girls, if you can’t fight ‘em, you might as well join ‘em.” That’s why all of us women know what a 1st and ten is! Some of us even attended games with Dad when the Bears played in Wrigley Field. Any Bear fan worth his weight in pigskin knows the 1985 season was charmed. We were living in Florida. Mom and Dad were retired and spent their winters near us. Mom was on dialysis because of polycystic kidney disease –an artificial kidney machine was keeping her alive – at that point, for six years. A tough cross to carry, but one she did well – to stay alive. Dad sold his home game tickets easily that year of 1985. In Florida, when the games weren’t on TV, we found an oyster bar called Schuckers that had satellite TV so we could see the games. Our daughter dressed as McMahon that year for Halloween. When the Bears won their two postseason games with shutouts, come on! We were obnoxious! Super Bowl here we come! “Well, they call me Sweetness and I like to dance . . . “ Each of us could sing the words to the Super Bowl Shuffle. Mom, though, was the sweetest of all. She approached Bill and me. “Would the two of you take Dad to the Super Bowl in New Orleans? It might be a once in a lifetime opportunity for him to see his beloved Bears in the Super Bowl. I’ll watch the kids.” “But, we’ll never get tickets, Mom!” She had it all figured out. Because he and his buddies had seven season tickets between them, there was a lottery drawing for tickets to the Super Bowl. “He’ll win a ticket,” Mom claimed. “You watch – I’ll pray!” We left for New Orleans after Mom’s Friday dialysis. Mom didn’t tell us she had a bad dialysis day. She had told the nurses a few times that she didn’t think her machine was working right. No one listened. She was sick when we left, but kept it hidden, putting on a good front. Our school aged daughters, whom mom called Little Angels, along with Mom waved us off. “Bye, bye! We’re going to party, too! Now we can stay up past bedtime and eat all the candy and sugar we want, right, girls?” Dad did, in fact, win a ticket to the Super Bowl! Bill’s brother, George, somehow got tickets for Bill and me. We called home to tell Mom and the girls. “I knew you would get tickets! I have an in with the Man Upstairs! Have fun! The girls are being so good.” Mom told us. It was a magical weekend in New Orleans. We celebrated with Dad’s buddies, friends from Chicago, and Bill’s brother. Mass at St. Louis Cathedral with Dad kicked off the day. We ended it with the Bear’s victory amid Dad’s tears of joy. Chicago Bears 46! New England Patriots 10! Arriving home late Monday still elated, the bubble of joy burst when we saw Mom. She looked like the Goodyear Blimp – swollen and puffy and in her words, “sicker than a dog.” “Gramma was throwing up,...
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