I had the opportunity to sit down (over the phone) with Mr. RJ Williams, the author of My Kidney Lives: Dark, Darker & Light: Celebrating Life with Kidney Disease, an autobiographical look at Mr. Williams’s life, as well as a collection of poetry about his life with ESRD.
Mr. Williams was diagnosed with focal segmental glomerulosclerosis (FSGS) when he was only 8 years old, and per Mr. Williams, a cause of his disease was never found. Mr. Williams says he did not experience any symptoms of kidney failure as a child, and besides a lot of doctors’ visits, he was “in the dark about the severity of [his] illness.” In his book, he has given metaphors to the different parts of his life, and this first part he calls “DARK,” as he was in the dark about his kidney disease. He was later informed by a “doomsday doctor,” as he calls it, that he had kidney disease.
Mr. Williams says that he started to feel the symptoms of his kidney disease when he was about 22 years old, just after he started college. He has labeled this part of his life “DARKER,” as this is when he first realized that he could die from his kidney disease. Not long after that, he started hemodialysis with a catheter that went to his heart. According to Mr. Williams, he was “anal” about keeping his catheter clean, as he didn’t want to have an infection go straight to his heart. He kept thinking that he was getting on the nurses’ nerves, constantly asking them to clean his catheter. Soon after that he had a fistula created, and once that healed, the catheter to his heart was removed.
Mr. Williams says that he was given a choice between hemodialysis and peritoneal dialysis, but he ended up going with hemo because he was “weirded out” about doing his own dialysis, and he just wanted to have someone do it for him.
Before he started dialysis, he was only producing “a squirt” of urine, and that decreased after he started dialysis. Per Mr. Williams, he felt relaxed while he was receiving dialysis, but about 30 minutes after he was done, he started feeling cold and “wiped out.” According to Mr. Williams, it was always a struggle for him to grab something to eat and make it home before fatigue took hold of him. In his book, he mentions that “several times [his] mom had to leave work to drive him home.” Mr. Williams was going to dialysis three days a week for 4 hour sessions while he was going to college.
After 18 months of being on dialysis, Mr. Williams received a kidney transplant on December 16th, 2007, a date that he rattled off as easily as his birthday. He was called in five times to be tested for other kidneys before he finally got the call that changed his life. The other kidneys were either not a match, or the one time he was a match, but there was another patient that they called ahead of him, so they ended up giving the kidney to the other patient. On the sixth call, the kidney was a match, and he was first in line. This part of his life, he calls “LIGHT,” his rebirth.
He received a cadaver kidney, and just after the transplant, the kidney was not working. Mr. Williams was worried because the doctor told him that if the kidney did not work, he would be back on dialysis. The doctor decided to try him on a water pill, and the urine started flowing.
About 10 years after receiving his transplant, Mr. Williams decided to write a book about his life with ESRD. He also loved to write poetry, and he says that the words just flow through him, from the divine. He wrote about his journey to a kidney transplant, and he included poetry about that journey in a book titled My Kidney Lives: Dark, Darker & Light: Celebrating Life with Kidney Disease, which you can purchase from Amazon.com at the link below.
His book was self published through Amazon, but Mr. Williams says that his mother was the one who filled out all the paperwork and really worked to get the book published, so to quote him, “I guess you could say my mom was the publisher.”
It was a privilege for me to interview Mr. Williams. His positive attitude is an inspiration.
Mr. Williams received his Bachelor’s of Arts in Radio, Film and Television, and he is currently working to produce a documentary and three fictional films about kidney transplantation.