Kidney Disease and Transplant Forum
Our mission is to support patients (adult and pediatric) and their families with during their time of need as they go through the End Stage Renal Disease and/or Transplant process with relevant information, support and access to helpful medical tools and resources.
Dear friends, each of us has a different story regarding how kidney disease (and in some cases transplant) have affected our lives. Allow me to share my story with you.
My beloved father carried the gene for Polycystic Kidney Disease (PKD). This disease also makes the individual more susceptible to strokes (aneurysms). My father was diagnosed as having Bright’s disease … a more general term for PKD before the advent of more modern medicine. He suffered from both heart attacks and strokes. He died of a catastrophic stroke called a Berry Aneurysm in 1963 in his mid-40s. Approximately one in four offspring of a PKD carrier will inherit the gene, however, the disease will not necessarily manifest itself in everyone who inherits the gene.
Many years passed and at the age of 30 my Internist at George Washington University Hospital in Washington, DC detected that I had high blood pressure … more specifically called labile (intermittent) hypertension. Being of relative young age and overall good health my physician ordered a cardiac stress test and a renal (kidney) ultrasound exam. The test results for the cardiac stress test came back normal. Not so with the renal ultrasound which detected the early stage formation of cysts on both kidney. Her diagnosis: Stage 1 Polycystic Kidney Disease. This came as quite a shock. The initial treatment was medication to lower my blood pressure.
Some five years later I moved to Silicon Valley in California in search of new career opportunities in high tech. I was fortunate to live in close proximity to Stanford University and soon thereafter became a patient in the Nephrology Clinic at Stanford Medical Center. My career continued and my PDK progressed. I moved from Stage 1 to Stage 4 chronic kidney disease over the span of about seven years. I began to lose weight and exhibit symptoms of enema and fatigue. Finally, as my eGRE and creatinine steadily declined I reached Stage 5. My Nephrologist took two important actions. First, he prepared me for dialysis along with what is called Epoetin Alpha medication to treat my low iron levels. Second, he connected me with the medical center’s transplant surgery team which adopted me into their program and placed me on the UNOS organ waiting list.
Like most Stage 5 Chronic Kidney Disease patients I exhibited all the classic symptoms. Migraine headaches, severe muscle cramps in my legs, enema and continued weight loss. I had hemodialysis treatments twice a week (3 hours per session). During this time I needed to travel for business and was blessed to have dialysis sessions in Orlando, Florida and Washington, DC. After 18 months on the organ waiting list and 9 months of dialysis I received the phone call from Stanford Medical Center “Mr. Wilson, we have a kidney for you”.
My joy was tempered by sadness knowing that in the preceding 12 hours someone has died and his or her family decided to donate the organs. The surgical Residents had traveled to the donor’s location to “harvest” two kidneys – one for me and one for another Stage 5 patient. My job was to get to the hospital as soon as possible. By the time I arrived at about 4pm on Monday-February 12, 1996 the transplant team had just begun surgery on the other patient. I was placed in the Ambulatory Care Unit (ACU) to undergo a battery of pre-op tests. Having had a dialysis session two days earlier the lead transplant surgeon determined that I did not need to be dialyzed before surgery. At about 10:30pm the ACU got the call that the surgery on the other patient was complete and the transplant team would be ready for me upstairs in the Operating Room in an hour’s time.
My procedure began just prior to midnight and I simply remember after the transplant was completed being rolled into the Surgical Care ward at the break of dawn. Seven long but uneventful days transpired as I adjusted to a new lifestyle free from dialysis, however, with a new regimen of immunosuppressive and other medications. Although quite weak I was profoundly thankful that my journey has come to an end.
In the months and years to follow I was granted an unrestricted diet which aided by steroids (Prednisone) and gained some 65 pounds – from 149 pounds the day of my transplant to well over 200 pounds. One year after my transplant I had my two native kidneys removed in what is called a bi-lateral native nephrectomy. Due to the excessive weight gain I have developed Type 2 Diabetes. However, by returning to a stricter low carb diet I have lost 25+ pounds and my diabetes in under control with twice daily insulin injections. I take a daily regimen of Traculimus, CellCept and Prednisone.
In the fall of 2018 I am deeply thankful to report that my overall health is good and kidney function – as measured by creatinine of 1.3 – is well 22 ½ years after transplant surgery. My Transplant Nephrologist at Stanford Medical Center informs me that I am in the 95th percentile of renal transplant survivors. I pray for many more years of good health knowing full well that each day is a gift from God.
In closing you will recall that for my kidney disease one in four offspring of the carrier (my father) inherit the gene and develop the disease. Well, in the case of our family of four siblings my older sister by four years developed PKD and underwent transplant surgery seven years ago. Although my sister is medically stable, she has had multiple complications from her transplant in addition to four strokes which have left her severely debilitated. Fortunately, she too has had access to excellent medical care in the Seattle area.
We are especially thankful for and indebted to our organ donors … and their families.
May God bless you, your family and medical care community, Lawrence Wilson