A trip to the emergency room with flu like symptoms in December 2019 revealed 16-year-old Jacob Jones had been living with a serious kidney condition.
Jacob was experiencing double vision and headaches, couldn’t keep food down and was constantly feeling chilled despite having a normal temperature. His mom decided to take him to the emergency room at a hospital in Lynchburg, VA, close to where they live. Tests indicated some concerns with his kidneys, so they called in the hospital’s nephrologist.
“There are no pediatric nephrologists in our area, so they called an adult nephrologist to care for him until we could be transferred to CHoR the next morning,” said Jacob’s mom, Teresa.
A scary diagnosis, the right kidney care team to help
That’s when they met Dr. Timothy Bunchman, chief of nephrology at CHoR, and Jacob was officially diagnosed with renal dysplasia, meaning his kidneys had never properly developed and at just 16 years old, they were failing. He was going to need a transplant.
This came as quite a shock to the strong, athletic teenager and his mom.
“Chronic renal failure from dysplasia is silent in nature and often not associated with classic findings more common in the adult population, such as edema, hypertension and blood in the urine,” said Dr. Bunchman. “This is a scary time for teens and families, but our dietician, social worker, nurses and physicians work collaboratively with families to help them thru the crisis and direct them to long term health improvement and stability. The end goal is not to make these kids special, but to make them normal and that is easily achievable.”
Dr. Bunchman explained the condition to Jacob and Teresa and started Jacob on dialysis three days a week – first at CHoR, then transferring to a center closer to home so Jacob and his mom didn’t have to keep making the two-hour trip each way. Our nephrologists, Drs. Bunchman, Kaspar and Lo, continued to follow Jacob, communicating with the team at his dialysis center and working to find him new kidneys.
Jacob also had a rare but treatable complication of unrecognized chronic renal failure – increased pressure on his brain due to toxic levels of vitamin A in his blood. Vitamin A is common in regular vitamins as well as in orange fruits and vegetables, such as carrots and sweet potatoes. Vitamin A is retained chronic renal failure and the resulting pressure on the brain can cause severe headaches and visual problems. Working together, our nephrology and neurology teams successfully identified and solved the problem.
“What was heartbreaking was that after Jacob started feeling better with dialysis, Dr. Bunchman explained that people with this condition have been sick their whole life – they don’t really know what it’s like to feel good. Everyone has always described Jacob as solemn. We were realizing he actually felt bad all the time. He never really felt good – he wasn’t able to enjoy fun moments,” said Teresa.
Learning to accept the gift of a lifetime
Though solemn is an accurate word to describe Jacob, it can be a bit deceiving. He’s also kind, smart, humble and a friend to everyone.
“Literally, I have had parents tell me that Jacob is friends with everybody, and everybody is friends with him. When he got sick, he got so much love he was flabbergasted – didn’t know everyone felt that way about him. He thought, ‘Who am I,’” added Mom. “He’s a giver, not a taker. He’s so used to doing everything for everyone.”
Shirley Alexander Das, social worker on our nephrology team, agrees.
"Jacob is quiet and introspective young man. He is courageous, well liked and a great kid," said Shirley, who works with Jacob and his mom on securing medications, making appointments and sometimes simply offering compassionate support in difficul
On July 12, 2020, the Joneses got the call that they needed to make the trip back to Richmond. A matching kidney donor had been found and Jacob’s transplant would take place the next morning!
Part of the VCU Hume-Lee Transplant Center, which does approximately 475 solid organ transplants per year in children and adults, our transplant program encompasses members of both pediatric and internal medicine nephrology, as well as transplant surgery. Collaborating with the nephrologists, Dr. Adrian Cotterell successfully performed Jacob’s kidney transplant – resulting in complete and immediate kidney function and allowing Jacob to not only stop dialysis, but return to normal activity.
Renewed health and momentous milestones
Jacob graduated from high school on May 24 and began his internship – which was postponed from last summer due to his transplant – at the Appomattox Court House National Historical Park the next day. It’s the perfect fit for the history and trivia buff who hopes to become a tour guide.
His next stop is the University of Lynchburg, where he was offered a spot in the Westover Honors College and he’ll begin studying history as a freshman later this summer. It’ll be a big change for Jacob, and for his mom and younger brother with special needs who looks up to him, but they’re eagerly anticipating it just the same.
“He was a little hesitant about going to college just a year post transplant. I told him why wait – embrace life,” said Teresa. “I am super excited for him. For one, I’m just so blessed that he’s here and that he’s getting a chance to experience all these things. Now I’m adamant about let’s try this, let’s do this.”
Between his health challenges and COVID precautions, Jacob hasn’t been able to be nearly as active as he’d like over the past year and a half. Now that he’s had his COVID vaccine, he can get out and do more which is welcome news heading into summer. While he can’t go back to contact sports like football and basketball, he has returned to weightlifting. He looks forward to spending time with friends again too, though they’ve been meeting up virtually to play video games in recent months.
Reflecting and moving forward
As Jacob and Teresa look forward to the months ahead, they can’t help but think about how they got here and the team that helped them along the way.
“We are so grateful. Every problem we had, Dr. Bunchman had a solution for it. The way he listened to what I had to say and the concerns I had – he didn’t brush anything off. At no point did I feel like I wasn’t being listened to or my concerns weren’t being heard. I’d never experienced anything like that before,” reflected Teresa. “We still hear a lot from Kim and Jules (nurse navigator and nurse educator, respectively). From the very beginning, Shirley has been so compassionate and comforting. With her it wasn’t all about clinical diagnoses. If I just wanted to talk about Jacob and what I was feeling, she would listen. If I was having a problem with the mail order pharmacy, she would help.”
Shirley has also been instrumental in helping Jacob manage his medical conditions independently as he prepares to head off to college and transition to adult medical providers in the not-too-distant future.
Jacob’s work ethic and thirst for knowledge are sure to take him places, but his mom believes it’s his humility, kindness and acceptance of others that will help him continue making a special difference in the world.
“I’m one super proud momma!”