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Teenager grateful to get the "payback" kidney of MUSC's first organ donor chain

By Dawn Brazell | Public Relations | September 5, 2013


The CuesFareedah Cue and her daughter Amber celebrate her recovery from having a lifesaving transplant Aug. 16.

Sarah Pack

Fareedah Cue sits on the edge of her daughter’s hospital chair, unusually cheery as she describes the suffering she’s seen her daughter endure.

“I always keep an optimistic attitude,” her mother said, putting her arm around her daughter. “I always keep faith knowing that everything is going to be all right. I always told her that her healing was coming. It didn’t matter how God did it. Whether he did it by healing her kidney or by giving her someone else’s kidney - that her healing was coming. And she’s got it,” she said, explaining the reason for her good spirits.

It was time for the Cues of Cheraw to have a bit of good luck.

First came the diagnosis at age 9 that her daughter, Amber, had lupus. It was a rollercoaster ride figuring out what was wrong with her and getting her the right treatment. They did well until September 2007, when her daughter began swelling and had to be flown to MUSC. She was diagnosed with end stage renal failure and had to be placed on dialysis.

Then in December that same year her daughter began having difficulty breathing. Cue took her to the emergency room, and Amber was flown to Richland Memorial Hospital in Columbia. In flight, Amber went into cardiac arrest and had a mini-stroke, she said.

“Her blood pressure was sky high. She had to learn to walk and talk all over again. Prayer got me through it,” she said of the tedious and scary process of rehabilitation. It was one of the worst moments of her life.

They have lived with dialysis ever since with Amber restricted by a dialysis schedule that has her chained to a machine for endless hours, not being able to go swimming or spend the night with friends. Both said it’s a hard life.

“Finally, we decided it was time to stop carrying the machine with us everywhere we go,” Cue said. “We want to travel.”

They decided to put Amber’s name on the waiting list for a kidney transplant about seven months ago. Fortunately, they didn’t have to wait long.

Amber became the “payback” recipient of MUSC’s first living donor kidney chain August 16. MUSC is one of 70 different centers that participate in the National Kidney Registry’s living donor kidney program, and it is the only transplant center in this state. Michael Denson, Ph.D., director of Marine Resources Research Institute with the S.C. Department of Natural Resources, became MUSC’s first Good Samaritan donor April 3. Read his story here.

He started the chain that led to Amber getting a payback kidney last month from a donor who was a police officer. Cue was amazed how well her daughter was doing. As they packed up on her release date Aug. 20, Amber began her negotiations.

“Mom, I want to go swimming today,” she pleads.

Amber made a celebratory sign with the date of her transplant.

“No, it’s too soon, yet. We’re not taking any chances,” her mother is quick to reply. They will have to be careful for three months as her daughter heals, and they make sure the kidney is not rejected. Both are grateful for the living donors who made the chain possible, and the police officer who gave Amber a new chance at life.

According to the National Kidney Foundation, there are more than 96,000 people awaiting kidney transplants. Last year, 16,812 kidney transplants took place and more than 4,900 people died waiting on a kidney. Nearly 3,000 patients are added to the kidney waiting list each month

Amber is enrolled in the Children and High Panel-Reactive Antibody (PRA) Program (CHIP), which helps children who are unlikely to find a donor because they’ve developed immunological sensitivities making them likely to reject organs from most donors. As a registry-affiliated institution, MUSC is granted 50 CHIP slots and Cue’s kidney, which came from a police officer, is considered “payback” for Denson’s non-directed donation of April 3.

Her surgeon, Prabhakar Baliga, M.D., said living donor chains allow patients to overcome the barriers of blood type compatibility or HLA antibodies that make transplants difficult to find for such recipients. Living donor chains allow multiple recipients to be transplanted and is the maximum benefit that can be derived from a donated kidney.

“So unlike in the past where only one patient got the benefit, in a chain, on average, as many as half a dozen can get a successful high quality transplant.”

Baliga said The Children’s Hospital of South Carolina places all of its children at high immunological risk on the exchange registry. “We felt that they should receive the maximum benefit of a living donor kidney.”

Kidneys transplanted from living donors are preferred because they last nearly twice as long as kidneys transplanted from deceased donors, according to data from the Scientific Registry of Transplant Recipients.

Baliga said Amber’s procedure went extremely well. “She had immediate excellent graft function with her serum creatinine decreasing from 10 to 1.2 in less than 72 hours.”

Being a pediatric patient always makes it difficult because of the small size of the artery and veins and the small space for the new kidney. However, a significant credit goes to the pre-and post-management team of laboratory, anesthesia, nephrology and the nursing staff who coordinated her care, along with pharmacists and social workers, he said.

Cue, who now is home with her daughter, said they are thankful Amber has done so well. Cue said they weren’t aware of the living donor program until they came to MUSC. She remembers how surprised they were when MUSC called to say there was a kidney for her Amber. She was en route to MUSC for another appointment and was glad she wasn’t driving.


Dawn Brazell
Michael Denson, Ph.D., pictured here in his office, said he was thrilled a child got a 'payback' kidney for the chain he started. "I'm over the moon about it."

“I was shouting and jumping all around. They called us Monday and said they had a kidney for us, and he was a live donor and he was the perfect match for her. I think it’s great because a lot of people don’t know there is a live donor program. To have a donor who’s not a relative is really a great thing,” she said.

Many in her family who might have been matches have high blood pressure or other conditions and were not good candidates. Amber said it’s been a rough journey, but she’s glad she’s had the surgery. She’s eager to swim, travel and visit with friends without having to worry about bringing her machine.

It feels good to have a new kidney, she said.

They plan to go to Myrtle Beach after they let her recover for three months and make sure there are no complications. Her mother smiles. “Then we’ll be ready to rock and roll. We plan to stay in a hotel with a heated pool. She’s going to get in that pool. I’m taking her to swim.”

They do have a message to share with all the donors who made it possible, but particularly Denson who started the chain and the police officer who was her direct donor.

“Thank you very much. I’m going to take good care of it,” Amber said.

Her mother nods, beaming. “I’m so thankful and blessed that he is such a Good Samaritan that he allowed my daughter to get his kidney and that it works perfectly and is going to continue to work perfectly, and we’re just so grateful for it.”

To learn about being a donor contact: Sara Parker, RN, Living Donor Transplant coordinator at MUSC at burbages@musc.edu  or (843) 792-4722.



 


  Related Video

Amber Cue
Fareedah and Amber Cue talk about their journey to Amber's kidney transplant.

Progressnotes video explores how MUSC's first living donor chain works

Sara Parker, RN, Living Donor Transplant coordinator at MUSC talks about the Living Donor program.



Related Stories >>

Good Samaritan starts MUSC's first living donor chain

Progessnotes story explores how MUSC's first living donor chain works

Charleston woman to tackle bucket list by donating kidney - The Post and Courier

The Children's Hospital of South Carolna ranked one of best in nation by U.S. News and World Report

Researchers, patients encourage organ donation


Resources >>

MUSC Transplant Center

National Kidney Registry

The Children's Hospital of South Carolina

Donate Life America

 
 
 

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