This hero of September 11 was lucky enough to benefit from a kidney transplant. But then his luck ran out. Again.

Stacey Lott was in Los Angeles on September 11, a continent away from the World Trade Center, when terrorists flew two airliners into the Twin Towers.

Yet the toxic dust from Ground Zero slowly destroyed his kidney.

The Sussex County woman recently donated it to her childhood friend Michael Megna, a first responder who spent three weeks at the site searching for survivors. Several years after the terrorist attack, he developed an extremely rare kidney disease that forced him to undergo dialysis.

It’s another blow for Megna, 52, who continues to fight for compensation from the September 11 Victim Compensation Fund. In 2016, at the height of his frustration and as his West Milford home was being foreclosed, he took out a billboard on Rt. 3 pleading with officials to “do what’s right by Mike.”

An impatient man by nature, he has spent the last two decades trying to master patience.

“I had explosive rage and I was breaking things, like a windshield…and doors, walls, tables, lamps, knuckles and hands,” he said recently. “I’ll never be that guy again.” At one point, he had been so disruptive at the Rutgers clinic treating 9/11 victims in New Jersey that he was barred from future visits unless accompanied by his brother.

Megna and Lott grew up in Mt. Olive; their brothers were best friends, their families attended St. Jude Thaddeus RC Church together. They hadn’t seen each other for years until 2022, when they crossed paths at a casual high school reunion at a local tavern.

She heard his hard luck story and blurted out that if he really needed a kidney, he could have his own.

“And I really meant it,” she said recently. “It was God’s way of intervening – it was meant for me to be there.”

And as if her role as Megna’s savior was destined, her blood type was the required O-positive.

The transplant took place last December and for several weeks everything seemed fine. However, in late February, Megna’s team of doctors at Cooperman Barnabas Medical Center in Livingston stopped by in the morning to tell her some terrible news:

As in “The Terminator,” his relentless illness seemed to be back at work. After destroying her kidneys, he was now attacking Stacey’s.

Megna cried while a nurse silently stroked her hand.

“It broke my heart to tell her,” he said of Stacey. “She didn’t give me a car, she gave me a body part!” My only job was to take care of it.

As for Lott, she is saddened for Megna’s sake. “We hoped this would be the cure that would help him live a productive life,” she said. Despite the setback, she said she doesn’t regret her donation: “It brought him to a better place.”

At Ground Zero

Megna was a Pompton Lakes police officer on the day of the attack. His father was a Port Authority police officer, and when he and his brothers couldn’t reach him that morning, they headed to Ground Zero to find him.

Father and sons were safely reunited, but for the next three weeks, Megna returned almost every day to lead the “bucket brigade,” clearing debris in the hope of finding survivors. He was a 29-year-old Marine veteran, healthy and sturdy.

Six years later, blood appeared in his urine.

In 2019, he needed dialysis.

On paper, Megna’s disease looks like an aberrant Scrabble hand: atypical anti-glomerular basement membrane (anti-GBM) nephritis. Neither a cancer nor a classic autoimmune disease, it originates in the bone marrow. Hers produces a renegade protein that attacks kidney filters designed to capture toxins, said Stephen Erickson, a nephrologist at the Mayo Clinic whom Megna consulted eight years ago.

The disease as a whole affects one in a million people. The slow Megna variant is even rarer, affecting one in 10 million people.

As one of his doctors said, “There are rare cases, there are very rare cases, and then there is you.” »

This scarcity makes it nearly impossible to conduct the comparative study needed to qualify for payment under the James Zadroga 9/11 Health and Compensation Act, passed by Congress in 2010 and renewed after public pressure in 2019.

The law specifies the mandatory process for a disease to be added to the list of “covered conditions” as they continue to emerge years after the terrorist attack, said Benjamin Chevat, executive director of 9/11 Health Watch . This nonprofit advocacy group, founded by unions whose members participated in the emergency response and long cleanup, helped write the law.

The federal government will only pay for treatment and compensation for a disease if research determines that people affected by 9/11 – first responders, residents or workers in Lower Manhattan – develop the disease at a higher rate than the population general.

For common illnesses that appeared relatively quickly – asthma and sleep apnea, for example – this requirement was easy to meet. The cancers grew more slowly, but eventually almost all were added to the list.

In the case of Megna disease, a one in ten million disease, the usual path to getting on this list is blocked, because virtually no one in the general population has the disease. And those lawyers who advertise on television? They’re only interested in people who have covered conditions, Megna said.

Still, Megna may have reason to hope, said Iris Udasin, medical director of the World Trade Center Excellence Clinic at Rutgers University’s Center for Environmental and Occupational Health Sciences.

The clinic is monitoring or treating about 5,000 New Jersey residents who were near Ground Zero that day. They don’t treat Megna’s kidney disease — because it’s not a covered condition — but Udasin knows her case very well and monitors her other conditions. (“As for poor Mike, I deal with the things I can deal with,” she said.)

She and her fellow researchers hope to use a new argument that was successful last year in getting coverage for uterine cancer. This, too, was rare among 9/11 survivors and first responders, simply because only a quarter of this group are women.

Researchers overcame this obstacle by citing “biological plausibility,” Udasin said. They argued that certain chemicals, called endocrine disruptors, can cause uterine cancer. These chemicals were in the witches’ dust brew at Ground Zero. It was therefore entirely plausible that they were responsible for the uterine cancers observed in the 9/11 group.

This same approach could work for Megna’s disease, she said. It has long been linked to exposure to hydrocarbon solvents, which are petroleum derivatives. Many documented cases involve auto mechanics who worked in repair shops, and the disease was induced in laboratory rats by exposing them to gasoline fumes.

These same chemicals were found in the smoldering debris of the collapsed Twin Towers.

Udasin confirmed that there are now other patients in the WTC Health program who report suffering from the same illness. (She’s not comfortable giving an exact number.) Research at Mt. Sinai Medical Center’s 9/11 clinic found that 11 people suffered from diseases affecting kidney filters. Citing these patients would strengthen the hypothesis that these illnesses were caused by exposure to Ground Zero.

However, each of these self-reported cases must be confirmed by review of medical records, including laboratory or biopsy results.

This is a laborious task that will take time.

“The good news is that there is reason to hope that there is a path forward. The bad news is that it takes a long time to do this properly,” Udasin said. She didn’t want to hazard a guess as to the completion date.

Press search

In the same way that a municipal road department plows the main streets before digging a small cul-de-sac, 9/11 researchers have attacked the diseases that affect the greatest number of victims. And they had to integrate research between their primary task of treating their patients.

If she had a bigger budget, Udasin said, she could hire more people to compile the data.

Megna, who served a tour of duty in the Marine Corps during Desert Storm, is financially stable these days. He is on total disability from the United States Veterans Administration due to PTSD, migraines and tinnitus, and also receives monthly check-ups and free medical treatment from New York State Workers’ Compensation due to his stay at Ground Zero. He and his girlfriend own a house in Mt. Olive.

But his inability to obtain compensation for his illness is a perpetual source of bitterness. He said he would view a one-time payment, likely around $250,000, as validation of the life-altering damage that fateful day inflicted on his health.

In the meantime, he takes steroids to weaken his immune system – a dose so high that his hands shake. He endured sessions of plasmapheresis, a blood-cleansing process that left him exhausted. He can barely climb stairs. He is heartbroken that his daughter, the youngest of his three children and the one born after 9/11, never saw him well.

And he’s just beginning to realize that what he hoped would be a cure now appears not to be, and that there may be other treatments in the future.

When doctors performed the transplant last December, he said they indicated there was only a very small risk that his disease would return. The following month, an article in the American Journal of Transplantation detailed six cases in which the disease had recurred, all within one to seven months after transplant surgery.

“I want them to treat me,” Megna says, “but there is no real solution.” He knows they are scouring the latest medical literature on his obscure illness in their spare time, looking for answers. He is grateful for their efforts, but says he feels like a guinea pig.

The ultimate solution for Megna could be a stem cell transplant, said Erickson, a nephrologist at the Mayo Clinic. This would involve eradicating its…