Blog post

For AKF Ambassador Bobbie Reed, the fight to help people with kidney disease is personal

AKF Ambassador Bobbie Reed describes her family's experience with kidney disease and why she is now an active advocate for the kidney community.
Bobbie Reed post photo

Kidney disease doesn't run in her family. High blood pressure has never been an issue either. So when AKF Ambassador Bobbie Reed's son Alex was in the intensive care unit in 2013 for 10 days because his blood pressure skyrocketed, she was at a loss.

Just a couple of weeks earlier, Alex had graduated from Penn State University. He'd played baseball during his time at Penn State, and every year, he was cleared medically so he could take part in the sport. Now, doctors weren't even sure if he was going to live. "It was really bad," Bobbie said.

Thankfully, Alex did live, but his blood pressure spike impacted his kidneys. "When he was released, the doctors said they tested his kidneys, and they were 'impaired a bit,'" said Bobbie. However, the doctors weren't overly concerned because Alex had a history of good health, and they felt his kidney function would return to normal over the next few months. Unfortunately, this was not the case.

Between June and October of 2013, Alex's kidneys completely stopped working and he went into renal failure, forcing him into dialysis. Although the Reed family quickly jumped into action to get Alex on the transplant waitlist, they ran into roadblocks along the way. The family had to go through genetic testing, and because they had no history of kidney disease or hypertension, Bobbie said the lab running the tests did not believe the results the first time they received them. "We had to go to another lab and run a whole series of other tests," said Bobbie. "It took us six months just to get onto the waitlist."

Even after the second set of tests, doctors still were unable to determine what caused Alex's blood pressure to spike, and it is a mystery that remains unsolved to this day. Doctors told the Reed family that Alex's severe flu case from several months earlier, along with slightly elevated blood pressure, could have been the cause. Looking back, they think something might have triggered his blood pressure issue and turned something on in his system that later led his blood pressure to soar and his kidneys to fail.

After going into renal failure, Alex's life stopped. His career plans and personal life were put on hold. Then, in 2015, the Reed family got the news they had been waiting for: a healthy, living donor would give his kidney to Alex. The family was elated. But while that kidney worked wonderfully for several years, it is currently failing, and Alex's kidney function is under nine percent. He relies on home hemodialysis four hours a day, four days a week in order to live. "We are aggressively looking for a new donor," said Bobbie.

Bobbie first learned about AKF through a friend, and while her family does not need financial aid, she advocates for people living with kidney disease who need assistance and tries to help them find suitable donors if they wish to receive a transplant. "After a stranger gave Alex his kidney, there was no way to pay him back, so [being an AKF Ambassador] is my way of acknowledging what he did, by helping everybody else," said Bobbie.

As an ambassador, Bobbie has established relationships with her state and federal legislators and encouraged them to pass legislation that is beneficial to the kidney disease community. One such relationship, with state Sen. Lindsey Williams, led to the passage of the Living Donor Protection Act in Pennsylvania. "I told [Senator Williams] our story, and she was really impacted by it," said Bobbie. "She then went onto the senate floor in Pennsylvania and shared our story, which was broadcast on TV." The Senate voted immediately following, passing legislation that helps protect living donors. "It was really powerful," Bobbie said.

Bobbie also participates in local health fairs and in a dialysis support group on a regular basis, where she passes along information on kidney health, transplants, and AKF – and she has no plans to slow down anytime soon. She continues to advocate for a national, uniform Living Donor Protection Act, and would love to see the AKF Ambassador Program continue to grow and evolve. Bobbie feels having people from every state across the country fighting for people living with kidney disease is incredibly beneficial. However, she recognizes that she can only do so much. "You can't do everything all at the same time, as much as I'd like to," said Bobbie. She feels strongly that people coming together and contributing what they can is ultimately how progressive change happens for people living with kidney disease.


Jenni Muns

Jenni Muns is the associate director of communications at the American Kidney Fund.