Monday, October 1st, 2012...2:42 pm
Teen needs second transplant, but donor pool is shallow for everyone
Many days, Braxton Upthegrove, 15, appears to be a typical high school freshman.
But a closer look reveals he has missed more days of school this semester than he has attended, he has a donor kidney from his father that his body is rejecting. He has had about 30 surgeries, with another slated for Tuesday.
Still, Braxton is a strong, upbeat teen who likes to focus more on sports, particularly basketball, than his illness. He hopes to be a manager on Henry Clay High School’s boys’ basketball team this year and plans to be a coach when he grows up.
The emotionally strong child is unwilling to talk about his physical limitations, admitting only that his kidney “doesn’t work very well” and that he needs “another one from whoever matches, and there are not enough people on the list.”
But said his mother, Michelle Upthegrove, the sooner the transplant the better.
When I first spoke with her just before school started in August, she said Braxton was undergoing daily dialysis treatments in his home, requiring the single mother, who works as an OB/GYN nurse, and her three children to maintain a strict schedule.
“He is hooked to the dialysis machine 10 hours a night,” she said, noting the schedule “can be difficult due to the extracurricular activities.”
“Now that school has started, he has to be in bed by 8:30 p.m. so that we can have his treatment completed in time for him to get up and catch the bus,” she said.
On top of that, Braxton takes medications throughout the day and gets an injection three times a week. Because of fluid retention, his liquid intake is limited to one liter a day, which is carefully measured. And he adheres to a strict renal diet, including Nepro, a “not-so-tasty” liquid nutrition drink, she said.
But the home treatments are not as effective as they once were.
Braxton is at a point that he needs to go to a clinic three times a week for hemodialysis, Upthegrove said. That would require an access line and open veins. Braxton’s veins are blocked, so the line cannot be implanted.
To unblock them, she and Braxton went to Cincinnati for angioplasty surgery earlier this month. They go back Tuesday to see if the veins have remained open. If the news is good, an access line will be put in place.
“If they didn’t stay open, we are running out of options,” Upthegrove said. “We are on borrowed time.”
The best option in either case is a new kidney. Upthegrove said friends and family have not been found to be suitable, and the pool of donors is very shallow.
Unfortunately, this scenario plays out daily throughout the country and the world. More people need to consider organ donation.
Dr. Roberto Gedaly, chief of the transplant section at University of Kentucky Chandler Hospital, said there were nearly 80,000 patients waiting for a kidney donation in the United States in 2011. A little more than 17,000 received kidneys, about 11,000 of which were from deceased donors.
“It is a problem,” he said. “We don’t have organs growing on trees.”
Organs from a live donor are preferred to ones from deceased donors, and either of those options is better than long-term dialysis.
“No machine can do what a well-functioning kidney can do,” he said.
But having the desire to donate doesn’t make you a good candidate.
Gedaly said hypertension, diabetes and obesity are among a list of factors that can eliminate a potential donor.
To save a lot of time and trouble, potential donors can contact Lynne Polly, the live donor nurse coordinator at the transplant center, and she will ask a few questions to determine who might be a reasonable candidate. She then will then them a packet of information to be filled out and returned. She can be reached at (859) 323-5737.
At that point, a committee looks over the information and decides whether to proceed with blood testing.
“It is a painless process,” said Dr. Malay Shah, surgical director of the Live Donor Kidney Transplantation Program at UK.
“Anyone interested has to make the initial phone call,” he said. “We can’t go out of our way to tell people. That is unethical. The potential recipient does that.”
And that is what Upthegrove is trying to do for her son and others who are awaiting organs.
“We’ve hit a dry patch of having people tested,” she said. “We are just trying to bring awareness and hope.”
Braxton underwent his first kidney transplant when he was 6 years old. Upthegrove said drugs administered to induce her labor caused her son’s oxygen supply to be reduced severely for an extended period. Several of his organs were affected by that lack of oxygen, but only his kidneys failed to recover.
“We got function back until he was 4, and then his kidneys failed,” she said.
Braxton received a kidney from his father, which worked well for a few years but is being rejected now.
While any organ transplant can be difficult for a body to accept, a second one, she said, presents bigger issues.
The immune system builds up antibodies whose job it is to neutralize foreign objects. For Braxton, that means it will be harder to find a compatible donor.
And that possibility is made even more difficult by the shallow pool of potential donors.
Upthegrove said doctors and medical personnel at UK are exploring all avenues to ensure Braxton’s body will be ready when a donor is found.
“We need as many people as possible to be tested,” she said, adding that her insurance will pay for any medical procedures. “It is going to be a bumpy road, but I still have faith, and he keeps me strong.”
If you would like more information about organ donation or to see if you qualify as a donor, contact Lynne Polly at (859) 323-5737