on January 11, 2013
I needed this book 42 years ago.
That day, my husband and I sat down in the office of perhaps the kindest physician who has ever lived on planet earth. I was terrified because he told me that I had Polycystic Kidney Disease, the curse of the Kaylor family, apparently since way before where the geneaology records start. I began to cry. We had just had our fourth son. My oldest son was already eight.
My father had waved goodbye in to us in 1957 as we stood in the little yard of our two-bedroom house in Ponca City, OK. I only learned years later that he cried as my uncle drove him to the airport where he would depart for Michigan, to undergo one of the earliest experimental kidney operations--not even a transplant--to try to extend his years. We needed him. My mother and my two sisters need him to come home safely to us. Unfortunately, though the operation was successful, the outcome was not. My father died--I was 14 years old. And our oldest son was now only six years younger than that.
That day, in the doctor's office, our physician smiled and assured me that I should not be concerned. "People have this disease and never know it. We don't find out they've had it until after they have passed. Many people die who have Polycystic Kidney Disease with grandchildren, and even great-grandchildren standing around them.
Though we were both truly upset, my husband and I took comfort from his words. Our doctor offered me the best support he could--trying to take the pain out of the words that described a disease that had caused my family and me so much grief and hurt.
But they were the wrong words to tell a young mother who had four children and a husband to care for. There would yet be many 3 a.m. feedings, diaper changes, first days of school, picnics and spankings and hugs and kisses. Many future boatloads of dirty laundry to be washed, grade school tragedies and high school proms. And thought we didn't know it at the time, we would eventually adopt two more children. Many wedding anniversaries and birthdays and first days of of a new job, to celebrate and observe with a husband who would tease me that we could either go out for a movie and dinner, either at our favorite steak or Mexican food restaurants, or the snack bar at the hospital.
They were the wrong words because, though the doctor had nothing but the best wishes and intentions for me, he made me believe that I could put off concern for my kidney health care for decades--UNTIL we had children and daughters-in-law and grandchildren. And I found out that most or all physicians take the same approach with Polycystic Kidney Patients.
But the fact was, and is, and Risa emphasizes this in Shift Your Fate, that you should begin taking care of yourself regarding your kidney disease, not 40 years down the road when things are much worse, but you should start caring for yourself THE VERY NEXT DAY.
Had I known many of the things Risa writes with loving instructions and cautions, my kidney disease may--MAY--have taken a much different turn in terms of long range care, with possible different outcomes.
* Do you know that kidney patients should not use great amounts of non steroidal anti- inflammatory drugs?
* What foods should you eat? Which should you not? Which foods might be dangerous for a kidney patient? Can you drink a beer at the ballpark, or wine with your pizza? Is a champagne toast at midnight on New Years Eve dangerous?
* Why might grandma's advice for you as a kidney patient be dangerous or eventually deadly, even though she lived to be 92, and SHE had Polycystic Kidney Disease?
* Can you, or should you, join the family in salted popcorn at the movies? (This was a major issue for me.)
* What accompanying illnesses might your Polycystic Kidney Disease help bring on?
* Would the best approach to life for someone with Polycystic Kidney Disease be to sit in your rocker in your darkened bedroom?
Risa, who has had the personal experience of undergoing a kidney transplant, and the professional view of the disease and her transplant from the professional point of view of a social worker, writes about these and so many other matters. She is positive, positively living, working and involved with Polycystic Kidney Disease in both personal and professional ways. I rejoice in having her as my personal mentor and coach through the courtesy and services provided the National Kidney foundation. She has begun to prepare me. She lives and teaches a pro-active lifestyle in relation to the disease.
You see, as I write this, my husband and I are preparing to move to Tucson for a couple of months for my own kidney transplant procedure. I have a donor--my own son.
We have lived with the disease for so long, being familiar with the early days of kidney transplants, hearing what were then the horror stories and the so many negative experiences of the people who underwent transplants.
But there is a new day in kidney transplant surgery.
Am I worried? I would be untruthful to tell you I am not concerned. But with Risa's book on her own experiences, and with her advice, I have an insight into the process before I actually undergo it. Many of my concerns have been satisfactorily answered because of Risa's book, and because of her personal and professional commitment to help PKD patients.
My father underwent his unsuccessful experience in an effort to help the many in our family who have or will eventually have this disease. I still wish his experience would have been successful, and we would have met him in our front yard when he came home. It was not to be.
But Risa Simon has been a blessing to me as I prepare to come home from the surgery.
You should buy Risa's book. It will change your life. It will Shift Your Fate.