Dialysis doesn’t stop Truckee’s Josalyn Brown
When 16-year-old Josalyn Brown first found out she would have to go on dialysis one of the first things that ran through her mind was Truckee’s annual volleyball trip to Elko.
Playing in the upcoming season wasn’t even a question to the then sophomore, but the overnight trip with a 25-pound dialysis machine and several six-pound bags of solution seemed impossible — she was going have to miss the program’s annual two-game trip to face Elko and Spring Creek and with it, time with her teammates.
Instead, her mother, Dianna Brown, made sure Josalyn was there in a hotel room in Elko with her team, who helped — or mostly watched — as she went through the nightly process of undergoing dialysis.
“This is life changing and there’s going to have to be some adjustments made, but you don’t have to stop living because of it,” said Dianna. “I need her to know she can do these normal teenage things.”
Ahead of Josalyn’s freshman year at Truckee High School, she underwent a physical in order to play volleyball.
Josalyn had played since she was 10 years old at various club levels, and was looking forward to joining the Wolverines program.
“We assumed it would be a normal physical,” said Dianna. “And then Josalyn’s blood pressure was 160/110, which is certainty not normal for a 14-year-old, but definitely not normal for someone who was as active as Josalyn was.”
After running blood tests and lab work, doctors discovered her kidney function was off.
“That’s how it all started,” said Dianna. “They sent us immediately down to pediatric nephrology department at UC Davis. They put her on blood pressure medication right away and it took about six weeks for them to determine what was going on.
“She had what’s called a reflux. When you urinate all the toxins get flushed out and in her case, everything was going back into her kidneys.”
The condition is likely something Josalyn was born with, said Dianna, and with her kidneys functioning at about 30 percent, she would eventually need a kidney transplant.
“I didn’t realize what was happening until I went to the first doctor’s appointment at UC Davis,” said Josalyn. “I was really scared at first, and so confused about everything.”
For the next two years, Josalyn and her family made monthly trips to UC Davis as more than 100 vials of blood were drawn to determine where she was at with her diet and kidney function.
Other than the trips to UC Davis and occasional bouts of fatigue, Josalyn was able to do the things she always had — playing lots volleyball and hanging with her friends.
Then last February, her kidney function dropped to a level where she was placed on a transplant list.
“Even though we’ve known about this for two years, you have to basically get to a point where you kidney function gets below 15 percent before they will actually put you on a transplant list,” said Dianna. “And then there’s this really small window of time that you go from getting activated on a transplant list to needing dialysis.
“In her case, they told us it would be within three to six months that she would be on dialysis.”
Last June, Josalyn underwent a procedure to have a catheter placed so that she could begin dialysis, and on July 13th she started Peritoneal Dialysis.
The family had to make trips to UC Davis three to four times a week for roughly a month in order to learn to use the machine at home. Each night Josalyn takes her weight, blood pressure, temperature and heart rate in order to properly adjust the solution before beginning dialysis.
The noise the machine makes started as an annoyance, but has since become something she can drift asleep to.
“I got used to it the noise it makes every night,” said Josalyn. “I’m comfortable with the sound now, if that sound isn’t going, I can’t sleep well because I’m so used to it.”
‘I just want her to keep going, I don’t want to limit her’
As the fall semester and her junior year at Truckee approached, Josalyn was determined to play for the Wolverines’ volleyball team.
The decision raised a few nurses ad doctors’ eyebrows, who were concerned about the roughly 12 inches of tube coming out of her stomach, but ultimately, Josalyn won out.
“You want to make sure if she’s going to dive for a ball, that tube doesn’t get ripped out,” said Dianna. “There was certainly a lot conversations about that when she first started with her dialysis nurse and her nephrologist, about how we could do that. I told them points blank, ‘I don’t want her to stop living, I want her to keep going.’
Wearing a compression band around her waste Josalyn is able to play for the Truckee junior varsity team, and during a tournament this year, played in seven matches in one day.
“She was the only setter and she set the entire day,” said Dianna. “I’m very proud of her. I was very impressed that she could do that.”
During the past season she formed a bond with Head Coach John Decrescenzo.
Before each practice this past season, the two greet each other with a, ‘How are you doing today,’ followed by both giving the same answer, ‘Freaking awesome!’
Following the season, Josalyn’s summed up the two’s relationship, simply saying, “I had the best coach in the world.”
‘Dialysis is keeping her alive, but she needs a kidney to live’
Josalyn and her family continue to make monthly trips to UC Davis. There, she’s become somewhat of a mentor to other youngsters with similar diagnosis.
She’s currently on a list awaiting a cadaver donor and there are others who are currently undergoing testing to see if they’re a match to donate a kidney to Josalyn.
“As far as finding a living donor it’s kind of up to us to get the word out,” said Dianna. “We went to Facebook, Twitter, Instagram, Snapchat, and just used social media to get the word out, and there are people currently in testing specifically for Josalyn at UC Davis.
“We know people are in testing but we have no idea where somebody might even be, if someone’s close to being a match. They won’t tell us, which is fine, because I don’t want to get my hopes up. Dialysis is keeping her alive but she needs a kidney live.”
Unfortunately, once Josalyn receives a kidney it will only last between five and 20 years, depending on if its from a donor or cadaver.
“It’s been really hard. We’ve learned to deal with it. She needs to know this is a life changing thing. It’s not just, ‘Oh we’re going to get a kidney transplant and everything’s going to be OK,’” said Dianna.
“Even after she gets a kidney transplant, she’ll be on antirejection medication the rest of her life … It’s something she’s going to have to deal with again in her life. But she doesn’t want anyone to feel sorry of feel sad for her. You make the best out of every single day, you have to.”
When times have been darkest Josalyn said she’s turned to her friends, and through it all has leaned on her family and her own indomitable spirit.
“Yes, it’s hard on us, and yes, people feel sorry for us, but there’s so many people out there that have way worse things going on in their life,” said Dianna. “This is something we can deal with, we just have to be grateful for what we have.”
The Brown family is currently searching for a living donor. For anyone who is considering becoming a living donor, you may register at ucdmc.ucdavis.edu/transplant. On the bottom right corner there is a link, “Be a Donor”. There are a series of questions that need to be answered. In the series of questions you will be asked if there is a specific recipient you would like to donate too. If you would like to be tested specifically for Josalyn you must enter in “Josalyn Brown” and her birthdate (1/4/02). If you pass this simple series of questions someone will contact you and fill you in on the next step as well as what the entire process entails.
Justin Scacco is a reporter for the Sierra Sun. Contact him at firstname.lastname@example.org.