Happy 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...
read moreAnti-rejection Drugs for Transplant Recipients
If you or a loved one have entered into the world of organ donation and transplantation, I hope you will take action. There is a need for changes to be made when it comes to the laws that cover the anti-rejection medicine transplant recipients must take after receiving a kidney transplant. The current laws were written when organ donation was relatively new and organ transplants weren’t expected to keep a patient alive as long as today’s transplant recipients can now live. The explosions of improved drugs used to prevent rejection are to thank for this wonderful progress. Please read the details below provided by the National Kidney Foundation and let your elected officials know that common sense dictates changes are needed. The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2013 (H.R. 1428/ S. 323) would protect the access to vital medications kidney transplant recipients need to survive. Any person with kidney failure is eligible for Medicare, even if they are not over 65 or disabled. However, transplant recipients on Medicare, who are under age 65 or not disabled, lose their Medicare, three years after the transplant. For many, that means being unable to pay for the anti-rejection medications they need to live or prevent going back on dialysis. The Comprehensive Immunosuppressive drug Coverage for Kidney Transplant Patients Act of 2013 would change that and allow those under 65, who are not otherwise disabled, to continue have Medicare cover their kidney saving anti-rejection drugs. Tell Congress to act and cosponsor H.R. 1428 and S. 323. Individuals with chronic kidney failure, who require dialysis or a transplant to survive, are eligible for Medicare regardless of age or other disability. There is no time limit on Medicare coverage for dialysis patients. However, transplant recipients who are not aged or disabled retain Medicare eligibility only for 36 months following their transplant. After their Medicare ends, they often face the challenge of getting affordable health insurance, greatly increasing the risk of organ rejection if they cannot afford their required medications. If the transplanted kidney fails, they return to dialysis or receive another transplant paid for by Medicare, both which are more costly than maintaining the new kidney (Medicare spends only about $25,000 per year for a kidney transplant recipient, after the year of the transplant, but more than $124,000 in the first year of transplant and over $86,000 annually on a dialysis patient). The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2013 would extend Medicare only for immunosuppressive medications. Coverage of any other health needs would end 36 months after the transplant, as under current law. The legislation also requires group health plans to maintain coverage of immunosuppressive drugs if they presently include this benefit. By supporting lifetime immunosuppressive coverage, you will help improve long-term transplant outcomes, reduce the number of kidney patients who require another transplant, and enable more patients to choose transplantation as their...
read moreDid you know you could be a living heart donor?
Yep! Hard as that is to believe . . . and many of you know how hard it was for me to give up one of my two kidneys. I had to stop and stand still when I heard that yes, there could be a living heart donor. I had to change my speeches, too! But, if someone needed a lung transplant and received one from a deceased donor, the medical team might decide the new lung transplant might have a better chance with the deceased donor’s heart, thereby a heart and lung transplant from the deceased donor would be performed. The patient’s heart might then be transplanted into someone who needed a heart transplant. It is absolutely astounding to me when I review the medical advances in my lifetime. If you know when the first heart transplant took place, you would revel in the advances. Trivia! Do you know what year it was? I have met people who have lost a loved one. A loved one who thought enough of his fellow man to be an organ donor. I have witnessed the donor’s loved one resting their head upon the chest of the recipient to listen to a heartbeat. The heart of their loved one who donated his organs to a stranger. There isn’t a dry eye around when people witness such an event. It is the magnitude of what we cherish – life! On this St. Valentine’s Day, reach out to those who mean the world to you and tell them you love them . . . with all your heart! p.s. The first heart transplant occurred 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...
read moreSo You Think Nuns are Mean?
Breaking the Stigma About Nuns Being No Fun Many of you know about my family’s connection to the Dominican nuns because of our beloved Sister Mike. For those of you who don’t know nuns, or Sisters as they’re also called, the best way to describe them is they are a group of women who take a vow to dedicate their lives to serve God. My grandpa Mike’s sister and daughter were both Dominican nuns, Sister Francis and Sister Mike. Sister Mike was, of course, not a typical nun, as those of you who have read my book learned. She was fun-loving, mischievous, and courageous. She was my fairy godmother disguised as a nun. When she died . . . how many 45-year-olds do you know who would accept death so others could live? But, today, let’s just focus on fun. When I was a little girl about to start 1st grade, I was beside myself with excitement. All I kept saying was that I couldn’t wait to ask my new teacher if she knew Sister Mike. And, yes! My new teacher, Sister Marie Raphael, OP (Order of Preachers) knew and loved her. Not to mention that everyone in the family, except 6-year-old me, played along and enjoy my delight when my teacher said, “Why yes! I know Sister Michael Mary! I didn’t know she had a niece named Suzie!” (Even though she was in on it all along.) Sister Marie Raphael was also my little sister, JoAnn’s, 1st grade teacher, the year I went to 2nd grade. We kept in touch with Sister Marie Raphael through the years. She became far more than a first grade teacher. She continued her education and eventually was chaplain and director of spiritual care at St. Joseph Healthcare system in Albuquerque, NM. How many of you kept in touch with your first grade teacher? “Raph” was a pistol and there is a funny story in my book about the joke she played on my mother. When my book was published, she invited us to speak to all the other nuns at The Mound in Wisconsin. After our presentation and reception, “Raph” invited us to have something “stronger” to drink in her room! She passed away this past July at the age of 85. Somehow I believe there is a party up in heaven going on with Sister Mike and “Raph”. I’m betting the nun who wrote the prayer below back in the 17th Century has the same sense of fun as Sister Mike and Sister Marie Raphael and Sister Francis. Maybe you had a “bad” nun in your past. My mom always used to say, “Don’t let one bad apple spoil the bunch!” I have great respect for the work nuns do to make the world a better place. Amen! Prayer of a 17th Century Nun Lord, thou knowest better than I know myself that I am growing older and will some day be old. Keep me from the fatal habit of thinking I must say something on every subject and on every occasion. Release me from craving to straighten out everybody’s affairs. Make me thoughtful but not moody; helpful but not bossy. With my vast store of wisdom it seems a pity not to use it all, but Thou knowest...
read moreHappy 2014!
It’s 2014! A new year! Joy to the World! In my lifetime of celebrating new years, it is with astonishment and joy that I celebrate the advances made in both the progress and treatment made in organ donation and transplantation. When our grandmother’s kidneys began to fail in the 1940’s, there wasn’t anything doctors could do to help her. She died before my sisters and I were born. I remember wondering what she would think if she knew that almost sixty years after her death, doctors would be able to take one kidney out of her granddaughter’s body, and place it into the body of her other granddaughter. I’m betting she’d give thanks and shout with joy! My grandmother (seated in photo on the left) had six children and twenty-four grandchildren. I believe she only met about four or five of her grandchildren before she died. Presently, more of her grandchildren are faced with failing kidneys. Come join me as I roll up my sleeves to help find a cure for polycystic kidney disease and shout with joy while we celebrate...
read moreThe Donkey
When Joseph and Mary journeyed to Bethlehem, the humble donkey carried and helped them along their way. The donkey was there in the stable with the other animals and witnessed the birth of baby Jesus. The mosaic is the photo was crafted almost fifty years ago by a class of grade school students. They made it as a get-well gift to their teacher in the hospital. The teacher was my aunt, Sister Mike. The school children collected the various pieces of glass to complete the mosaic, but they could not find red or yellow glass to use for the donkey’s pack. When Sister Mike heard about their frustration, she sent them a message to pray to God because He always answers prayer. One day, an accident occurred outside their classroom window. A truck hit the traffic light at the corner; red and yellow glass showered down upon the ground. The children excitedly asked for permission to collect the glass and were able to complete the mosaic. It is a gift cherished by our family. Sister Mike also gave her students a gift by teaching them to turn to God in prayer on their journey through life. During this time of gift giving, thank you for the gifts of friendship love and generosity you have given to me....
read moreMothers, Daughters and Baby Girls
My Mom was only a teenager when her mother died. For the life of me, I cannot imagine how my mother was able to survive in this world without her mother for all those years. And, I cannot imagine why I never asked her about it? Oh, don’t get me wrong – my mother spoke about her mother, always reminding me I was named after her, telling us stories, but what the heck was wrong with me that I didn’t ask my Mom how she survived the “firsts”: the first few days, weeks, months, Christmas, birthdays, and most especially, her first child? How did my mother cope when I was born without her mother? I wish I had asked. But, I’m pretty sure I know what her answer might be. I think my mother would have told me, “Suzie, we don’t know why sad and bad things happen. We don’t know God’s plan for us, but I sure as hell (my mother cussed) believe He has a plan for each of us. We can get mad at God. We can yell and cuss and tell Him we are mad. He can take it. And, when we don’t think we can take it, we can cry and cry. Then we have to wipe our eyes, pull ourselves together and pick ourselves up. Trust in the Lord! Life is a gift. Fight like hell and live it!” Why did my mother so firmly believe in God? When her mother died, surrounded by her husband and six children, my mom the youngest and still a teenager, witnessed her mother sit up on her deathbed and say, “Here I am, Lord!” before she died. Today I’ve been thinking a lot about my mom. One reason is Thanksgiving is coming and Mom always made the gravy and I make lumpy gravy. But mainly because of a new baby girl, named Amelia Lois, born on November 17, 2013. Baby Amelia Lois’s mother lost her mother very suddenly seven short months ago. Makes my heart ache. I cling to my mother’s advice to trust in the Lord. by Suzanne Ruff...
read moreDara is an angel!
If you are an author, consider calling her. She knows the publishing industry and she rocks! I really appreciate all she has done to help me with my new website. www.wiseinkpub.com
read moreA New Birthday Buddy
Janice and I became Great Aunts to Brayden John! He arrived early! Delightedly Brayden John and Janice are Birthday Buddies! How cool is that? — with Janice Gill.
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