Kidney Disease: An Amazing Story of Survival
Karla Robinson, MD
In honor of National Kidney Month, Urban Housecall Magazine wanted to bring an inspiring story of survival to you. We interviewed Jacquie Lewis-Kemp, a woman who was diagnosed with diabetes at 7 years old, went on to experience the devastating effects of kidney failure. Her triumphant story of survival after a kidney transplant will absolutely move you. Jacquie is the author of a book, Blessed Assurance: Success Despite the Odds which chronicles her journey to success while living with a chronic illness.
UHM: Can you tell us about your diabetes diagnosis at the young age of 7? What were some of your symptoms?
JLK: I was diagnosed diabetic at the age of seven. In fact it was my grandmother who noticed my symptoms first. As a young girl, I used to go on fishing trips with my grandparents in Canada. I remember having to go to the bathroom and stopping to get some water. By the time we walked back down the dock, I had to use the bathroom again. And while we were near the car, I needed more water. My grandmother told my mother to take me to the doctor. A mere finger poke diagnosed my diabetes.
In 1969, I was hospitalized for a month to determine my insulin and diet requirements as well so I could be taught to give myself a shot [daily].
UHM: Did you recognize the importance of your diagnosis at the time?
JLK: My parents were instrumental in making sure I understood that I could do anything that I wanted to do as long as I was willing to work hard at it. And so my diabetes became something that I wasn’t afraid of or felt angry about or really worried about. I did what I had to do so that I could take on what life had to offer. I did understand that there was no cure for my condition and that I would need to take insulin for the rest of my life.
UHM: At what age did you start taking control of your own diabetes management?
JLK: I had to take ownership of my own diabetes with the knowledge that my parents were there to help in any way they could. Immediately I took my own insulin shots and was responsible for testing. Testing was then a urine test before meals. High school cheerleading made it necessary for me to learn how to manage my insulin, eating and exercise schedule without my parents. But going off to college was when the final apron string was cut. Not only was I managing the day to day requirements of my diabetes, but I scheduled doctor’s visits on my own. Actually, the real independence came after my first job and selecting a doctor and healthcare system to manage my diabetes.
UHM: What was your diabetes control like over the years? Was there a particular stage of life that was more difficult for you and why?
JLK: The biggest step in independence was for me to leave home for college.
I discovered a wonderful phenomenon while in college. I could lose weight and maintain my perfect size 6 if I let my blood sugar run a little high. At 18, [it seemed] ideal. I could eat what I wanted and as long as I didn’t cover the excess with short acting insulin, I wouldn’t gain weight. What I didn’t realize then was that I was causing long term damage to my body.
This trick of letting my blood sugar run a little high to maintain my weight continued through my early working days and my wedding day. I married my husband in my mother’s wedding dress as a perfect size 6. As a young married woman, I can recall a visit with my doctor in which she told me how dangerous it was for me to have an HgbA1C of 14!
It wasn’t until pregnancy and my son’s birth that I thought seriously about my diabetes. What I realized was that the best thing that I could do for my son was to be healthy and to be around to help him grow.
UHM: Did you know the risks of kidney failure as a result of diabetes?
JLK: Part of my diabetes education while growing up was learning the long-term complications of diabetes. I understood that tight control [of my diabetes] was the best defense. I believed those things would never happen to me.
UHM: How long had you lived with diabetes prior to your kidneys showing signs of failure?
JLK: In high school, there were diabetic changes in my eyes. In college, my doctors reported that I was spilling protein in my urine. While I was pregnant, my high risk specialist noted significant protein in my urine. He referred me to a nephrologist (kidney specialist) to talk about slowing the kidney damage. Nine years later I began dialysis.
UHM: What was your road to transplantation like?
JLK: I began dialysis as a 37 year-old, wife, mother of a 9 year old, African American, CEO of a manufacturing firm. I began peritoneal dialysis hiding this from everyone except immediate family. I began dialysis under cover, closing my office door and making a line busy so that it looked like I was on a confidential call. I kept all of my dialysis supplies in a cabinet under my desk and replenished dialysis fluid each week. Once I even had to do a dialysis exchange in my car on the way to a meeting.
When I told [my younger brother] that I was going to start dialysis, he almost immediately said that he would donate a kidney. The donation process is intentionally a long careful process. My brother and I were tissue matched and indeed we matched 4 out of 6 antigens. However, psychologically, I wasn’t sure I wanted my little brother to undergo surgery for me. At the same time I was aware of the wait time for a cadaveric kidney. Somehow I hoped I would receive one from the list and not have to put my brother through surgery.
My preparation for transplant began with discussions with a social worker to make sure I had the necessary resources for transplant: financial (not just for the surgery itself, but to pay for anti rejection drugs for the rest of my life.), emotional and physical. I met with a psychologist to determine whether I was and would continue to be a compliant patient. I also had to demonstrate that I had a support system to take care of me while I healed. I also had to undergo chest x-rays, EKGs, a cardiac stress test, gynecological exam as well as dental clearance that no decay or infection was in my mouth.
UHM: How has your life changed as a result of kidney transplantation?
JLK: Shortly after the transplant, I felt filled with more energy than I had felt in a long time. I spent 7 months on dialysis, but it felt like 7 years of my life because it was hard time. The amount of energy I had after the transplant was the first thing I noticed.
Eighteen months after my kidney transplant, my doctors completed my treatment plan and I received a pancreas transplant. After 33 years of insulin dependence, I no longer took any diabetes medication. Four short months after the pancreas transplant, I contracted the West Nile virus. I was comatose for almost a month, however because of God’s blessed assurance and His guidance of the skillful hands of the University of Michigan transplant team, I survived with both organs still healthy. My kidney transplant is now 10 years old, and my pancreas is 8 years old.
UHM: What an amazing story you have shared with us. Your new book chronicles this journey. Can you tell our readers a little about your book?
JLK: Blessed Assurance: Success Despite the Odds is my inspirational story of living life with diabetes rather than limiting life because of diabetes. It is a book that chronicles how I grew up with diabetes and managed to live what I believe to be a successful life.
My book is not a “how to” book, however it does describe some medical conditions in order to talk about how to live with them. Blessed Assurance is the story of how I lived 40 years with diabetes. Some of the methods were the right way, others were obviously flawed and therefore my book tells a real story, not a theoretical story.
Blessed Assurance: Success Despite the Odds can be purchased from my website, www.jlewiskemp.com, at Borders, Amazon.com (http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Dbooks&field-keywords=Jacquie+Lewis-Kemp&x=14&y=19) and from bookstores near you, just reference ISBN: 978-1-934363-63-8.
UHM: What advice would you give to other diabetics or people who may be facing kidney failure or transplantation?
JLK: Medical advances have come a long way since the 70s when I was growing up with diabetes. Take advantage of the technology to keep blood sugar tightly controlled. Know that life isn’t over. My biggest fear was that I would go into kidney failure—and then I did. The lesson learned there was not to be fearful, but to do something to prevent or postpone it.
Transplant is not a cure for kidney failure, it is a treatment. There are a number of conditions that could cause a transplant to fail and then dialysis would be necessary again. But transplant restores so much life that kidney failure took away that it makes the intense preparation and wait more than worth it.
UHM: Thank you so much for sharing your story with us. We honor your strength and endurance this month during National Kidney Month. You serve as an absolute inspiration to all those that may be facing health challenges.
For more information or to learn more about kidney disease, please visit http://www.nkdep.nih.gov/patients/kidney_disease_information.htm.