Who Is In Control?
A THOUGHT FOR TODAY: Courage is the price that life exacts for granting peace. The soul that knows it not, knows no release from little things. -Amelia Earhart, aviator (24 Jul 1897-1937) Oh, how hard it is to find peace and to be courageous when fighting a disease! Oh, how in awe it is when we see it done! Amazing Grace, how sweet it is . . . I posted this quote recently on The Reluctant Donor’s Facebook page along with the three sentences of my thoughts. Many people ‘shared’ and ‘liked’ which just goes to show how good Amelia Earhart’s quote is along with the truth about finding peace and courage when battling disease. HOW DO YOU HOLD IT TOGETHER WHEN BATTLING A DISEASE? My mother often answered this question for me. I asked her so many times through her battle with PKD. I recently found a letter from thirty years ago from when I also asked that question. I giggled at some of her answers. “With gritted teeth” “I swear” “I yell at your father” “One day at a time, one hour at a time, one minute at a time” “With faith that better things are ahead” or “I ask Sister Mike to help me through” “The hardest thing is putting my life in God’s Hands! You know what a fighter I am and I have control but I don’t – I found that out when I was so sick!” “I had a good, long talk with the nurses.” “You give me great strength by telling me I have great strength and courage.” “I keep telling myself I’ve GOT to do it and it really does make it easier.” Thank you, Mom, for showing us the way . ....
Read MoreHappy World Kidney Day
Did you awaken this morning when your kidneys gave you a gentle nudge? Or, was it more like an urgent jolt that caused you to spring out of bed and make a mad dash to the bathroom? Whisper a word of thanksgiving for your kidneys today! It’s World Kidney Day and your kidneys are mighty organs within our miraculous bodies. Kidneys filter the toxins in our blood. In one day, your kidneys can filter 52 gallons of blood, working day and night. Kidneys help regulate your blood pressure and your electrolytes and monitor Vitamin D intake that promotes strong bones. Sure, it’s easy to be filled with gratitude if you have healthy kidneys. If you’re one of the lucky ones, take care of them. At your annual physical, ask your doctor, how are my kidneys doing? Be vigilant and know your blood pressure and blood sugar. Be involved in your health and you can head off kidney disease. But, what if your kidneys are diseased, failing or already failed? What about if your kidneys are not in good shape? What if they have made you sick, made you cry, and make you just plain miserable? My mother was someone with diseased kidneys. Kidney disease took the lives of the people she loved most, over and over and over again, and then it struck her.What I most remember was a comment my mother made to me while she was in the hospital and very, very ill. She said, “I can’t be mad at my kidneys for failing, after all they got me to this point in life and I’ve had a wonderful life.” She fought to live for ten years on dialysis and battled hysterectomy, bowel obstruction, parathyroid surgery, snapped quad muscles that kept her bedridden for eight and a half long months. There were tears, anguish and much suffering. But, somehow she kept her joy with peeks of humor amid the pain. It is a testament to her grit and determination. The lessons she taught me about life and, most of all, living life joyfully are astounding. Celebrate kidneys today! If possible, reach out a hand to anyone not blessed with good kidneys. Please pray for a cure, contribute to research, or help someone suffering with daily life! Remember to live...
Read MoreA 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 life were fundamentally at risk for all the ill effects of PKD? And to think, there was nothing we could do about it….no treatment or cure….. We were both overwhelmed and distraught. It didn’t take me long to realize that doing nothing about this emotionally and physically challenging situation was...
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....
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