Mother-daughter pair create kidney donation chain

By Rachel Wagoner / rwagoner@timesonline.com

Dawn DeFrancesco was ready to donate one of her kidneys to her mother, Lani, in October. But when last-minute lab results showed the match would not be a perfect one, the two went into the National Kidney Registry’s paired exchange program and others received kidneys along the way.

KENNEDY TWP. — A daughter’s gift to her mother turned into a chain that benefited five people along the way thanks to a unique program at Allegheny General Hospital.

Dawn DeFrancesco was ready to donate one of her kidneys to her mother, Lani, in October. But when last-minute lab results showed the match would not be a perfect one, the two went into the National Kidney Registry’s paired exchange program.

“To me, it didn’t matter. Fine, take my kidney. As long as my mom’s getting a healthy kidney,” Dawn, 42, said.

In paired exchanges, donors donate their kidneys to other recipients in exchange for compatible kidneys for their loved ones, according to the National Kidney Registry, a nonprofit that facilitates living donor kidney transplants.

Allegheny General Hospital is one of the National Kidney Registry’s Donor Care Network Centers of Excellence, a network of elite transplant centers. It’s the one of two hospital in Pennsylvania with that designation.

Dawn’s donation created a chain of five donors that allowed each recipient to get a perfectly matched kidney.

“To me, I thought it was a better option. I felt like it was this crazy turn of events that turned out to be for the best,” she said.

Kidney disease reveals itself

Lani, 68, was diagnosed with igA nephropathy in 1999. She had no symptoms and only found out about the kidney disease when she got testing done for a routine physical checkup, she said.

The disease can occur to anyone at any age and is one of the most common kidney diseases in the U.S. It can eventually cause kidney failure.

The disease progressed slowly, but Lani, who lives in Kennedy Township, continued to monitor it through regular bloodwork and took medication to slow the progression. The only symptom she had was exhaustion, Lani said.

About three years ago, her kidney function decreased to 20 percent and it was time to get on the transplant list to receive a cadaveric kidney transplant, Lani said. It can take several years to receive a cadaveric donation, or a kidney donated from a deceased person, through the transplant list.

Dawn said she was ready three years ago to donate a kidney to her mother and started testing to find out if she would be a good match. But her mother put it off, not wanting her daughter to pursue that if there was another option, Lani said.

Eventually, Lani’s kidney function deceased to 11 percent this year, and she would soon need to go on dialysis, she said. It was then that the two began the process to set up a direct kidney donation from Dawn to Lani.

The match between the mother and daughter looked like a good one and the surgery was scheduled for a Friday in October.

Dawn, who now lives in San Diego, flew home for a couple months for the surgery and recovery. The Tuesday before the surgery, lab work came back showing Lani had antibodies in her blood that could reject Dawn’s kidney, explained Dawn. It was a small chance, but still there.

Lani was already struggling with the idea of taking one of her daughter’s kidneys, and said she was initially heartbroken the direct donation between mother and daughter would not work.

“As a mother, I felt terrible that she had to go through this for me,” she said.

The transplant team at Allegheny General told the DeFrancescos about the exchange program. Lani was initially unsure about it. She didn’t want her daughter, nor did she want anyone else to put themselves out there for her unnecessarily. But Dawn’s mind was made up, her mother said.

“I didn’t give it a second thought. It’s my mom. If I can do this, I’m going to do this,” Dawn said. “I probably should’ve put more thought into it, but I didn’t.”

So they entered the exchange program that ended up benefiting several others.

“I would recommend it to anyone,” Lani said. “It was a good thing.”

Living donor benefits

Dr. Lorenzo Machado, an abdominal transplant surgeon at Allegheny General Hospital, said living kidney donations have a number of benefits over a cadaveric donation. Living donor kidneys tend to be healthier, last longer and work more quickly in the recipient, he said. Machado was the lead surgeon for Dawn’s surgery and assisted with Lani’s surgery.

Machado said most living donors tend to be direct donations, but the exchange program is an invaluable option for situations where a healthy donor does not match his or her intended recipient.

“If there was no program available of this type, we could not have given (Dawn’s) kidney to Lani without her having a high risk of rejection,” Machado said.

Because Dawn was only in the area for a limited amount of time, she did an advanced donation and had her surgery Nov. 1. Lani’s surgery was Nov. 14. The advanced donation created the chain of five donors that led to Lani receiving a perfectly matched kidney from a 45-year-old man from Chicago two weeks later.

Dawn said her kidney went to a 17-year-old in Georgia who had a 2 percent chance of finding a matching kidney.

The kidney Lani received began working right away even after it was flown, packaged on ice, from Illinois. Her recovery went well and she is now on a regimen of anti-rejection medications that she’ll take for the rest of her life.

Although her mom didn’t let on that she wasn’t feeling well before, Dawn said she’s noticed a difference post-surgery.

“From the day she got out of surgery, her spirit in general, it completely changed. That makes me think she was not feeling well before,” Dawn said. “She’s been doing amazingly. I can’t even believe it.”

A new kidney is not a cure, though, just an extension of your life, Lani said.

“I’m trying to take care of it and be nice so it wants to be a part of me,” she said.

As for Dawn, she flew home to San Diego shortly after Thanksgiving and continues to recover there. Looking back on the experience, she wishes people knew more about the exchange program.

The National Kidney Registry offers financial and legal aid to donors, she said. Once a person donates a kidney, they are automatically put at the top of the transplant list should they ever need to be a recipient, Dawn said.

Additionally, a donor typically suffers no long-term effects from donating a kidney, she said.“It had a really good end result, and the fact that five people got kidneys is amazing,” she said. “I think if people knew about these programs, more people would be willing to do this.”

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