When Lori Clark woke up from a 43-day medically induced coma, she realized she could no longer mover her limbs. Doctors placed Clark in a coma to try and treat Legionnaires’ disease she contracted at a hotel in New York state. (Photo by Karl Schneider/News21)

ALBANY, N.Y. – Doctors twice notified Lori Clark’s family that they expected her to die.

Clark, a project manager who lives in upstate New York, was placed in a chemically induced coma for 43 days after she was diagnosed with Legionnaires’ disease in 2011. She initially thought she had the flu and delayed seeing a doctor. The last thing she remembers before waking up from the coma is her son rushing her to hospital.

“I couldn’t feel my limbs, was coughing all the time and had a really high temperature,” she said.

Legionnaires’ disease is a severe form of pneumonia caused by the waterborne bacteria legionella. People may contract Legionnaires’ when they breathe in water mists contaminated with legionella, or when drinking water goes down the wrong pipe and into the lungs. The Centers for Disease Control and Prevention says people above the age of 50 or those with underlying health conditions are most at risk from the disease.

Clark was 46 years old when she was diagnosed. She also suffers from rheumatoid arthritis and lupus, and she went into septic shock and organ failure after contracting Legionnaires’ disease. Her fingers caved in while she was in the coma because she couldn’t take her arthritis medication, she said.

“Before Legionnaires’? I could walk. I could run. I could ride my bike. I could garden, and I could bend over. Life after legionnaires? Not so much,” said Clark, now 54. “I will never see another country unless they build a bridge. I will never get on a plane after this as I’m more susceptible to pneumonia now. I can no longer type properly as my fingers curled up while I was in the coma… Legionella is a killer, and people need to pay more attention to it.”

Legionnaires’ wasn’t something that ever concerned Clark before her diagnosis. She knew it existed, but she never thought she was at risk. Now, after the disease nearly killed her, she finds herself angered by the fact that thousands of people are affected by this waterborne illness every year.

“I’m reading about it in the news every day. How could I not be mad?” she said. “People in power need to see the light and understand that they are playing with people’s lives. They’re  shirking their responsibility for the public’s health. I invite them to go through what I went through.”

Clark’s lungs now only function at 50 percent capacity. She has to work from home most days, and she can no longer travel by airplane or do the hobbies she once enjoyed.

Doctors diagnosed Lori Clark with Legionnaires’ disease in January 2011. Clark first noticed symptoms when she began coughing after a visit to a hotel in New York state. Doctors induced Clark into a chemical coma for 43 days to try and treat the disease. (Photo by Karl Schneider/News21)

“Mentally, it gets easier. Physically, it doesn’t,” she said. “Anxiety levels subside after a while, but in the beginning, I felt like I was walking through a minefield every time I went out in public. I was like a ticking timebomb. If I couldn’t tie my shoe. I would fly off the handle.”

Potable water is one of the most common sources of legionella, according to the Environmental Protection Agency. But health experts argue that officials tend to ignore drinking water supplies when it comes to identifying sources of legionella contamination.

Brad Considine, director of strategic planning with the Alliance to Prevent Legionnaires’ Disease, said officials need to start “facing the facts.”

“When outbreaks happen, health departments look to cooling towers and air-conditioning systems, but research shows potable water is the often the main source,” Considine said.

“By ignoring domestic water systems, they are putting people’s health at risk. We were given bodies that fend off all these threats that we live with, but there’s some things we shouldn’t have to fight.”

Clark sued the hotel where she contracted Legionnaires’ for negligence.

She was there for a three-day work event, and she used the spa and pool facilities, the restrooms and drank the water. A week later, she was fighting for her life. It turned out the hotel never informed guests that elevated levels of legionella had been found in the water system a month earlier, she said.

Health inspectors said it was possible she contracted it from the spa and pool, but like in most Legionnaires’ cases, it is difficult to identify the exact source.

Her attorney, Michael Conway, of Harris, Conway & Donovan, said most Legionnaires’ cases settle as people don’t want it known publicly that their water systems are contaminated.

“Because it’s often difficult to identify the source of contamination, people tend not to take legal action as they believe they’re fighting a losing battle,” he said.

The CDC reports that about one in 10 people die from the lung condition, and Clark considers herself lucky to be on the right side of that statistic. The CDC also says that legionella has been responsible for 66 percent of waterborne disease outbreaks associated with drinking water in the U.S., while the number of cases has risen since 2000.

For Clark, that’s the most frustrating part. In her opinion, officials aren’t dealing with the problem.

“It’s entirely preventable. That’s one of the saddest things,” she said. “None of this has to happen. I feel for the families and the individuals who have to go through this. I’m lucky to be alive.”

To see the full News21 report on “Troubled Water,” go to troubledwater.news21.com on Aug. 14.

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Vanessa Budetti and her son Skylar have lived in Newburgh for more than a decade. In 2016, the city of Newburgh declared a state of emergency after discovering that Lake Washington, the source of the city’s drinking water, was contaminated with high levels of perfluorooctane sulfonate that exceeded the levels recommended by the Environmental Protection Agency for safe consumption. (Photo by Michael M. Santiago/News21)

NEWBURGH, N.Y. – Vanessa Budetti tries to live a clean, healthy life. She stocks organic and natural products in her household. She runs frequently to stay in shape. And she even rejects bottled water to decrease her environmental impact.

So the 45-year old Newburgh resident said she was surprised when she found out that she and her 14-year-old son Skylar had traces of a cancer-causing chemical in their blood.

They believe it came from their tap water.

“All Skylar and I drink is tap water,” Budetti said. “I felt it was the best choice to just drink the water that was supposedly clean and ready for us. We tried so hard, and then all of a sudden … (we) realize there are these chemicals in our body at these levels.”

Nearly 29,000 Newburgh residents were exposed to this chemical for years, according to Riverkeeper, a nonprofit organization that advocates for clean water for New York residents. Budetti found that she and her son are among the residents whose blood tested positive for perfluorooctane sulfonate.

The New York State Department of Environmental Conservation determined that the Stewart Air National Guard Base in Newburgh was the source of the contamination.

Military bases have used firefighting foam that contains the chemical, and manufacturers also have used it in cleaners, carpets and non-stick surfaces such as Teflon. Newburgh City Manager Michael Ciaravino, declared a state of emergency in May 2016 after these chemicals were discovered in Silver Stream and Washington Lake, the city’s primary water source.

State officials will fund a carbon filtration system for Washington Lake to eliminate the chemicals from the water supply, and they said they will seek reimbursement from those responsible, including the Department of Defense, according to a New York State Department of Environmental Conservation news release. While residents wait until they finish installing the filter, scheduled for completion in October 2017, the city is receiving re-routed water from New York City’s Catskill Aqueduct.

An unclear future

Although officials are installing the filtration system, Ciaravino said other areas need clean up as well.

Some of the city’s highest pollution levels were detected in water coming from a pond near the military base. The pond used to flow into Washington Lake, but officials diverted it so it now flows into the Hudson River.

Ciaravino said his next goal is to urge the state to fund another filtration system at Recreation Pond so Washington Lake becomes usable again as a long-term water source.

Ciaravino said the Department of Defense has been “polite” in its response to the city. “But at the end of the day, we’re not seeing a meaningful action plan that translates into the level of urgency that everyone agrees this is,” he said. “We would like this to be treated like a threat on domestic soil in the United States of America.”

Dan Shapley, the water quality program director for Riverkeeper, said two other important problems aren’t resolved: The DOD has yet to claim full responsibility, and it still allows polluted water to flow off its base.

“They polluted this city’s drinking water supply,” Shapley said. “They’re charged with protecting us. Get started protecting this city.”

The DOD did not respond to a request for comment.

Riverkeeper also is pushing for a long-term, comprehensive plan to protect the drinking water and will continue monitoring the state’s response to ensure information reaches all Newburgh residents, especially since nearly 48 percent of households in the city speak a language other than English, according to the U.S. Census Bureau 2015 data.

“The question that many of our community residents are asking rhetorically is: If the Department of Defense can defend us to threats around the world, why can’t they defend us against this cancer-causing agent that’s emanating from their very military base … where’s the urgency of that?” Ciaravino said.

In 2016, the city of Newburgh, New York, declared a state of emergency after discovering that Lake Washington, the source of the city’s drinking water, was contaminated with high levels of a chemical found in foam used to fight fires at military bases. (Photo by Michael M. Santiago/News21)

Potential health effects

Residents have raised questions about how the contaminated water could affect their long-term health. The Environmental Protection Agency classified perfluorooctane sulfonate as an “emerging contaminant,” or a chemical the EPA is researching and monitoring to determine its human and environmental effects. Researchers have linked the chemical to some cancers, high cholesterol and fetal development complications.

After living in Newburgh for 15 years and drinking the tap water while pregnant, Budetti said she suspects her son’s autism is linked to the contamination. She is concerned about his future.

The U.S. Agency for Toxic Substances and Disease Registry and the U.S. Army Medical Research and Materiel Command have conducted studies to evaluate how the chemical may cause birth defects and delayed development. However, there is no conclusive evidence.

The New York State Health Department offered blood testing to Newburgh residents starting in November 2016. After receiving her results, Budetti said she expected to see elevated levels of the chemical.

However, she was shocked that her son’s tests showed extremely high levels of one of the chemical variations, PFHxS. They were about 30 percent higher than Budetti’s levels, and in the 95th percentile for U.S. testing. Budetti said a state health department counselor told her the increased levels are likely due to the transmission of chemicals from her bloodstream during breast-feeding.

“It’s really upsetting to see,” Budetti said. “Everything I’ve done for his entire life … and these are the levels he’s at.”

She said she also worries about the current state of her water. She doesn’t trust the government’s test results and would like to test her own water.

But Ciaravino said they’re working hard to communicate that the water is safe now.

“We are now drinking some of the best, clearest water available in the state of New York,” he said. “I would like to be able to fulfill the promise that when we switch back to Washington Lake, we’re going to have the same quality water that we had been providing them since this emergency started.”

Ciaravino said this water contamination crisis is the last thing the city of Newburgh needs as it continues to face socioeconomic challenges. In 2015, about 34 percent of Newburgh residents lived below the poverty level, compared to the New York state average of about 16 percent. Nationally, it’s 15.5 percent, according to the Census Bureau.

“It’s this constant struggle between hope and despair in our community,” Ciaravino said. “We’re tough, though. That’s one the thing we have going for us: Newburgh is resilient, and Newburgh doesn’t shy away from its battles.”

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