A Carrollton mother and one of her sons are each in need of a kidney transplant, ideally from a living donor.

Tara Lonberger, 49, and her son, Isaiah Phillips, 22, have Alport syndrome, a rare genetic disorder that causes hearing loss and kidney failure, also known as end-stage renal disease. According to the National Library of Medicine, half of all men diagnosed with Alport will need dialysis or a kidney transplant by age 30 and 90% will experience kidney failure by age 40.

Kidney failure among women with Alport is much rarer. Only 15% to 30% of women diagnosed will experience kidney failure by age 60. Lonberger is among those unlucky few.

“I’m just a rare, special case,” said Lonberger.

She has just one kidney, which her doctors tell her is now only 8% functional.

Lonberger, who was adopted as a child, said she was told that her biological father died of kidney failure in his 30s. For most of her life she blamed his death on drugs and alcohol, though she too has had kidney issues for years.

“We didn’t know what it was; we were just treating it with my blood pressure medicines,” Lonberger said.

That changed 13 years ago when Isaiah and Lonberger’s oldest son, Matthew, who’s now 28 and living in Delaware, were each diagnosed with Alport at the Children’s Hospital of the King’s Daughters in Norfolk.

Isaiah, who works at the Kroger grocery store in Smithfield, “was fine until a month ago and now all of a sudden he’s stage 3,” said Tara’s husband, Steve Lonberger.

There are five stages of kidney failure, each corresponding to someone’s “estimated glomerular filtration rate” or “eGFR,” which gauges kidney performance on a 1-to-120 scale with higher numbers equating to better health. Stage 3a, which according to the Alport Syndrome Foundation is when symptoms typically become noticeable, equates to an eGFR range of 45-59 milliliters per minute. Stage 3b is 30-44.

“It dropped like 40 points,” Steve said. In males, “it happens fast.”

Tara, who for the past several years has used a peritoneal dialysis machine, is stage 5, which equates to an eGFR of 15 or lower.

Isaiah’s doctors have recommended a “preemptive transplant” in hopes that he can avoid needing dialysis, which Tara described as a painful process and “a full-time job.”

 

Life on dialysis

Tara’s dialysis machine filters her blood for eight hours every night. It supplements, but doesn’t replace, the job of a functional kidney.

“It’s an extension of life; it’s not a cure by any means,” Tara said.

Using the machine requires a sterile environment. That means no air-conditioner or ceiling fan even when it’s hot due to the risk of peritonitis, a potentially life-threatening infection of the abdominal cavity.

“Then I just pray and hope that no alarms go off through dialysis through the night,” Tara said.

Each morning after unhooking from the machine, she takes a series of pills, some of which are intended to combat the side effects of dialysis.

“They’re constantly adjusting her medications based on her bloodwork,” Steve said.

With those medication changes come frequent disputes over health insurance coverage.

“She’s got two medicines now that we’re trying to get approved,” Steve said.

Steve said end-stage renal failure automatically qualifies you for Medicare and Social Security disability insurance, which is supposed to be an expedited process that takes at most 60 days, but took a year. She also has a Medicare supplement plan that will cover the 20% cost of a transplant not covered by Medicare.

“She’s totally covered now but it’s an added stress that people shouldn’t have to go through. … We had to get (U.S. Sen.) Mark Warner’s (D-Va.) office involved. … That’s the only reason why it got done in December when it was a year later,” Steve said.

Then it’s off to work, if Tara is feeling up to it. Tara maintains part-time employment with Hampton City Schools as a kindergarten instructional assistant. Sometimes she wakes up feeling extremely nauseous, a frequent symptom of end-stage renal disease.

“That can put me out for a couple days sometimes, and all I can do is lay there,” Tara said. “If I go to work, by the time I come home from work, which is around 2-2:15 p.m., I’m out. Like, I go to bed and I don’t do much of anything else because it just takes so much out of me to even get up and do the whole work thing. I love it. It’s why I still do it. It definitely gives me a mental break so I don’t have to think about it all the time.”

Then there are days with what Tara calls “kidney fog,” a type of brain fog due to the toxins that a functional kidney would ordinarily remove but build up if they aren’t filtered by her body or her dialysis machine.

“All my schoolteachers at the school I work at, Hunter B. Andrews (Elementary), they’re excellent over in Hampton,” Tara said. “Calvary Baptist Church is our church and they are excellent. They’ve been such a huge support system for us and for our niece and nephew who live with us.”

The Lonbergers gained custody of Tara’s then-14-year-old niece, Tori Spalding, and Tori’s then-9-year-old brother, Zeke, three years ago after their mother – Tara’s sister – died unexpectedly.

Tori, who turned 17 in January, has offered to become a living donor when she turns 18.

 

Why a living donor?

Tara is already on two separate transplant lists, one for Sentara Health System and one with Virginia Commonwealth University, but the wait time to receive a deceased donor of her blood type, O-positive, is around five years due to the high demand and limited supply.

Kidneys are among the few organs that can be transplanted from living donors.

A kidney from a deceased donor, Tara said, can last seven to 10 years, while a kidney from a living donor can last up to 20 or 25 years. It’s why the couple has become so open with Tara’s story.

“The more people know, the better chance she has of finding a living donor,” Steve said.

The family is also looking into whether Isaiah’s twin brother, Jeremiah, could be his donor.

Jeremiah and Isaiah, as fraternal twins, were born on the same day but aren’t genetically identical. So far, Jeremiah hasn’t exhibited any symptoms of Alport and is scheduled to undergo genetic testing at VCU to determine whether he’s at risk.

Even if he isn’t and proves a match for Isaiah, the family is expecting an uphill battle for Jeremiah to be approved as a donor.

Both brothers have hemophilia, another rare genetic disorder that can make bleeding more difficult to stop due to the lack of clotting agents in their blood. Jeremiah is also on the autism spectrum, which could pose a problem for the psychological screening that prospective donors undergo.

“I think we could get past the blood disorder part but the autism, I’m not sure; I mean, he’s very high on the spectrum, but I don’t know,” Tara said.

Sentara won’t consider him, Tara said, and VCU wants extensive genetic testing to ensure he isn’t likely to have kidney issues of his own down the road before they’ll consider the idea.

But for donors without existing medical conditions, the surgery is relatively quick and painless.

“It’s laparoscopic now. … Usually the donor’s out of the hospital within two days, sometimes the next day,” Steve said, referring to the minimally-invasive procedure now used for gallbladder removal and other abdominal procedures.

Another option should a prospective donor be incompatible with Tara or Isaiah, but matches someone else on the transplant waitlist, is what’s referred to as a paired kidney exchange or “swap,” where two donors are paired with two matching recipients.

Tara’s health insurance would cover all expenses for the recipient and donor, Steve said.

The couple is asking anyone interested in being screened as a prospective donor to visit www.vcuhealth.org/kidneydonor or Sentara.donorscreen.org.