In some ways, getting sick at a young age was a good thing, according to Derek Forfang. “You get used to following a routine, so dialysis is just [another routine],” Derek said. “It’s always been a part of my life to deal with these things. The quality of my life has always been pretty good.”
Nearly 40 years ago, Derek was diagnosed with Type 1 diabetes. For people with type 1 diabetes, also known as juvenile diabetes, the pancreas does not produce insulin. Patients must carefully balance their food, activity, and insulin therapy to maintain their health.
Treatment when he was diagnosed was nothing like it is today, according to Derek. “There was an extreme lack of technology,” he said. “They were excited to give you disposable needles, so you didn’t have to boil them anymore. My grandparents gave me my first blood testing monitor when I was 22.”
In his mid-20s, protein began to show up in Derek’s urine, an early sign of kidney disease known as proteinuria. Derek’s diabetes took a toll on his body, but he kept working in the corporate world while he searched for better treatment options. In his early 30s he had a pancreas transplant, in hopes that a new pancreas would produce insulin and lessen the effects of his diabetes. “Unfortunately the [pancreas] transplant caused all my issues to accelerate,” Derek said. “Within the first year my kidneys started to fail.” The pancreas transplant lasted only 15 months.
In 1999 Derek’s father donated a kidney to him which lasted three years. When the kidney failed, Derek transitioned to peritoneal dialysis and continued working. In 2005, Derek had to transition to in-center hemodialysis. “Soon after that I was not able to work anymore,” Derek said. “I started to have more of an extreme loss in my lifestyle and quality of life. My identity was so tied to my career, and I lost it. There was a loss in my relationship with my kids, my wife at the time, my friends. Things just change, and it’s hard to get through all that change. There were losses and gains.”
After nine years of in-center hemodialysis treatments, Derek went through desensitization, a process to decrease harmful antibodies caused by his first transplant which would make his body reject a second transplant. He was put on the emergency kidney transplant list because most of his blood vessels that would be used as accesses for hemodialysis had become damaged, a complication of diabetes. Derek received a second kidney transplant within several months and the kidney has been working well for two years.
Derek’s experiences changed his priorities in life. “I’m much more focused on family and friends, not on achieving things,” he said. “It’s given me the ability to speak for patients that can’t speak for themselves. Being able to advocate has become a very rewarding part of my life.”
Derek was asked by his social worker to join the Patient Advisory Council at his local ESRD Network, Western Pacific Renal Network (Network 17). He also joined the Kidney Patient Advisory Council of the Forum of ESRD Networks. “I began to travel while I was on in-center hemodialysis, and it gave me a great feeling of purpose,” he said. “ After transplant I got more opportunities. I’m able to help other people. It’s more rewarding than my corporate career [was].”
Derek advises other patients to take charge of their care in order to live a better life. “You need to be the captain of your care team,” he said. “Everyone else is advisors and coaches. We are the first line of defense for what we’re struggling with.” He also urges patients to have a positive attitude and have fun. “Not all times are rosy,” Derek said. “But almost every day there’s something good.”
#TogetherWeCan is a continuing series of stories from kidney patients and care partners, sharing their experiences and insights.