2020 was a tough year for everyone, the world was shut down and we were all stuck at home. James became sluggish. We took this as the COVID lockdown blues and kept trying to push him to stay somewhat active and move around. It was May and we couldn’t do anything else but get him checked out. We took him to Urgent Care, and they sent him immediately to the hospital where the words Kidney Failure came out of the doctor’s mouth. The doctors at the local hospital recommended he get transferred to Nemours in Orlando immediately for specialized care.
Dad took on the hospital trips and stays, while mom stayed home with 1-year-old brother, Micah. We were limited to contact with the family and we managed the best we could. The doctors were able to establish this as a kidney injury and worked to diagnose James with Lupus Nephritis.
At this point I think we only heard about Lupus from House episodes so naturally we tried our best to let the doctors take the lead and not go down the rabbit trail of googling until we got adequate information.
The doctors attempted to not have James on dialysis and work his systems with medication. But his kidneys were not working without lots of help. After 17 days he was sent home.
We had our nieces and nephew come to stay with us and the scariest day of our lives happened. James’ blood pressure went so high it caused PRES which presents in gran mal seizures. We got him to the hospital once stabilized and worked toward making sure he could get better to return home.
He ended up on hemodialysis. Mom took on trips to the clinic and doctors’ appointments since dad was the overnight person. Within 6 months we moved to peritoneal dialysis where treatments are done at home while asleep. This allowed for a consistent schedule at home with both James and baby brother.
In May 2021, Mom took a job in Georgia, outside of Atlanta which meant moving to a new location, new doctors, and new support systems.
The Lupus seemed to be in remission due to medication. And after a hospital stay in August 2021 it was determined James wouldn’t need dialysis any longer. This was shocking and surreal.
What was explained is that the kidneys are allowing for output and this would be something we would have for a little while but transplant was going to be inevitable. The nephrology team helped us understand how to read his blood work and what we can do at home to keep teaching a young teenage boy how to live with kidney failure.
Lots of twists and turns. Lots of bumps in the road. Lots of little scares and heart to hearts.
We have had to adjust our live around making sure his medication and diet is best for him while also trying to maintain the understanding that all a 15-year-old boy wants to eat is McDonald’s (which potassium—potatoes and sodium-salt is a definite no).
We are coming into the transplant journey with a lot of prayer, preparation, and hope. We are preparing him while also praying that he doesn’t need dialysis. We are praying that our donor continues to be a match in the midst of this process.
We are grateful, grateful for communities of care in Florida, in Georgia, in other places around the country. Grateful we were able to get a few more years out of his kidneys after taking such a hit from the Lupus. Grateful we are here today with this story. Grateful for the support we have to get us to transplant and along the way post-transplant.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.