AUBURN, Maine — Starting at 7:30 every Tuesday, Thursday and Saturday morning, Dawn Lopez spends nearly five hours at a dialysis center, almost all of that time tethered to a lifesaving machine that siphons off, cleans and replaces her blood.
It’s not an easy life for anyone dealing with kidney failure. The 46-year-old working single mother would prefer a later time slot at the Lewiston dialysis center so her 9-year-old daughter wouldn’t have to get herself off to school alone twice a week, but she hasn’t pushed. She feels lucky to have a slot at all at a center not too far from her Auburn home.
“They told me that there’s a waiting list because I asked them, ‘Can I change my schedule?’” Lopez said. “There’s no availability. They told me that they have people that are waiting to get on dialysis.”
It’s a trend across the state: In less than 20 years, the number of dialysis patients in Maine has almost doubled.
Some dialysis centers have seen just a slight uptick in clients in recent years. At others, the patient surge is so large they’ve added staff and scheduled extra shifts to fit in everyone.
Maine’s largest dialysis provider, Fresenius Medical Care, told state regulators last month it has so many patients right now that it needs to build a $1.4 million facility in central Maine to handle the overflow from Lewiston-Auburn and Augusta.
“Any dialysis unit, especially in urban areas, they can tell you they’re kind of busting at the seams,” said Aron Chalou, nurse manager for County Dialysis Center in Presque Isle, which today has about five times the number of patients it had 20 years ago.
No one knows exactly why more Mainers need dialysis, but experts have some pretty good guesses.
Mainers are increasingly overweight and obese.
More struggle with diabetes or hypertension.
They skew older.
And too few get the early care needed to head off the devastating effects of kidney failure.
No one sees any of that changing significantly anytime soon.
“The need is just going to grow,” Chalou said.
‘I need to live’
Kidneys fail for a variety of reasons, including injury, infection, disease, birth defect, drug abuse, medication side effect and as a complication of diabetes or high blood pressure. Dialysis removes waste, salt and excess water from the body, doing the work of the kidneys when they can’t do it on their own.
It is a time consuming process and can put patients at risk of infection and other severe complications, but it’s also life saving. Patients in kidney failure can live years, sometimes decades, when they otherwise would have died within days or weeks.
“I’m not going to take it lying down, because I need to live. My daughter needs me … I just can’t imagine not seeing her graduate or not seeing her have her first baby or not being there for her when she goes to prom,” said Lopez, who started dialysis in 2014, when long-undiagnosed kidney disease put her near death. “I don’t want her to live without me, so I have to take care of myself as best as possible so she knows that I did not give up without a fight.”
Patients can undergo dialysis for months or years while they wait for a kidney transplant. Those who aren’t eligible for a transplant, or who don’t want one, spend the rest of their lives on dialysis.
Dialysis comes in two forms: peritoneal and hemodialysis. In peritoneal dialysis, a catheter is inserted in the belly and the lining of the abdomen is used to filter waste from the blood. It is often done at home.
Hemodialysis is what most people picture. Blood is siphoned off, run through a machine to clean it and then returned to the body. It can be done at home, but it’s most often done in a hospital or at a special dialysis center.
In 1996, 606 Mainers with end-stage renal disease were on dialysis, according to the United States Renal Data System. By 2014, the latest year available, that number had jumped to 1,055, an increase of 75 percent in 18 years.
Maine isn’t alone. During that same time, dialysis patients more than doubled nationally from 221,111 to 477,476 people.
Maine’s dialysis system is small and spread out, with just 17 centers for 16 counties. Any increase, let alone a 75 percent increase, is particularly noticeable here.
And some doctors and dialysis center operators say there’s been a new surge since those last numbers were recorded in 2014.
“We’re seeing, unfortunately, a lot of chronic kidney disease, a lot of kidney failure,” said Cynthia DeSoi, president of Nephrology Associates of Central Maine in Lewiston and medical director for Fresenius’ Lewiston-Auburn dialysis centers. “I mean, we’ve always been growing, but the growth rate had kind of slowed until maybe the last year or two.”
Fresenius owns 10 centers in Maine, including ones in Auburn, Augusta, Bath, Lewiston, Portland and Wilton. In its letter to state regulators last month, the company said its Lewiston and Augusta centers are operating nearly at capacity, with area patient numbers growing 11.3 percent over two years.
“We’re super busy,” DeSoi said.
Fresenius told the state it wants to open a new, $1.4 million center in Gardiner, complete with 10 dialysis stations, nighttime dialysis and home training and support.
Operators of County Dialysis Center, Maine’s only nonprofit dialysis center and the only center in all of Aroostook County, have been thinking of expanding, too. In 1997, the center cared for 12 patients. Today that number hovers around 50 — and sometimes goes into the upper 60s.
“If it weren’t for us, what would these people do?” Chalou said.
Dialysis Clinic Inc., or DCI, runs three clinics in Belfast, Skowhegan and Waterville. Owners aren’t just thinking of expanding, they’re doing it. A decade ago, DCI’s centers averaged 34 patients each. That dipped to the high 20s about five years ago before bouncing up again a year-and-a-half ago. Today, each center cares for 40 to 48 people.
The company is building a new dialysis center in Waterville with 18 to 21 stations to replace the current 13-station clinic. It hopes to open at the end of September.
Even some in-patient dialysis units are busy. Central Maine Medical Center in Lewiston has four stations in two rooms, all reserved for people who have been admitted to the hospital or are uninsured and can’t afford to pay thousands of dollars for dialysis at an outside center. Officials there are talking about adding more rooms or a third shift, which would have its dialysis stations running 12 to 14 hours a day.
However, not everyone feels the need to expand. DaVita, which owns three centers in Bangor, Ellsworth and Lincoln, saw less than a 5 percent increase in the past year, a figure it considers “slight.” A DaVita spokeswoman said the company did not know whether that increase was caused by new dialysis patients or patients who had switched to DaVita from another center elsewhere in the state.
In Portland, Mercy Hospital hasn’t seen an increase in in-patient dialysis. Across the city at Maine Medical Center, in-patient dialysis has grown about 7.5 percent in the past four years, a rate the hospital considers normal.
‘Crashing and falling into kidney failure’
No one knows for sure why more Mainers need dialysis. Experts guess it has something to do with the state’s high rates of obesity, diabetes and high blood pressure — all of which contribute to kidney disease and have increased over the past 20 years
According to State of Obesity, a project by the Robert Wood Johnson Foundation and the Trust for America’s Health, diabetes among Maine adults has more than doubled, from nearly 4 percent in 1995 to nearly 10 percent in 2015. Hypertension, or high blood pressure, jumped from 21 percent in 1995 to 34 percent in 2015.
Obesity almost tripled in 25 years, going from nearly 11 percent of Maine adults in 1990 to nearly 19 percent in 2000 to 30 percent in 2015.
According to state statistics, nearly three out of four adults were overweight or obese in Androscoggin County in 2013. About two-thirds of adults were overweight or obese in Oxford and Franklin counties.
Mainers also skew older, with a median age of about 44 and nearly 20 percent of the population over 65, according to the U.S. Census. Older people tend to have more kidney problems than younger ones.
“There’s certainly a myriad of reasons [for the uptick in dialysis patients],” Chalou said. “I think the top two really are that we’re an older population and we’re a slightly overweight population and the diabetes and hypertension are there.”
Many experts also say too few people in Maine are getting the early care they need to head off — or at least postpone — kidney failure. Some of those people are immigrants or refugees who spent years without good health care. Others are native Mainers who regularly saw a doctor but whose kidney problems still weren’t diagnosed until it was too late.
“People are crashing and falling into kidney failure,” said Andrea Finnerty, executive director of the National Kidney Foundation.
That’s what happened to Kara Thompson 19 years ago. She was born with just one very small kidney rather than two healthy ones, but doctors didn’t discover the problem until she was 29, suddenly sick and close to death. She spent nine months on dialysis until her sister donated a kidney.
That kidney surpassed its life expectancy and is now failing. Thompson, now 48 and living in Bath, has been on the transplant waiting list for almost three years without success. A couple of live donors matched with her, but both backed out. She expects to start again on dialysis later this month.
“I’d prefer not to (start dialysis). It is a life saver, but at the same time it makes you feel so horrible,” she said. “I vowed the last time I was on dialysis I would never do it again, but obviously I’ve grown up and if it’s going to save my life I’m going to do it.”
According to the foundation, just 10 percent of American adults with chronic kidney disease know they have it.
“Kidney health has just not been at the public awareness forefront,” Finnerty said. “With preventative medicine and preventative care and diagnostics, it’s not been something that’s looked at as much as heart [disease] and cancer.”
The consequences are many
Dialysis — and the increase in dialysis — has very real consequences for a patient’s health, quality of life and finances.
Because there aren’t a lot of dialysis centers in Maine, especially in rural areas, patients can spend hours in the car in addition to the hours they spend hooked to a machine three times a week.
“Dialysis essentially becomes their full-time job,” said Chalou in Aroostook County.
Some northern Maine patients have to travel 60 miles or more one way to dialysis — sometimes during heavy snowstorms. The center often has to help patients pay for transportation.
The midcoast region has a couple of dialysis centers, but many patients still have to travel 20 to 30 miles to get to one, if they can get a ride at all. Two transportation companies used to help low-income patients get to treatments, but one went out of business, leaving some people struggling to find a ride.
“It is absolutely horrific in the midcoast area,” said B.J. Shaw, operations director for DCI.
Once they get to dialysis, patients spend hours tethered to a machine. Many can’t work because of the time commitment. Others have a job with flexible enough hours, but the treatment leaves them too exhausted or sick to work.
Ken Edwards, a 59-year-old magician from Lewiston, is one of them. In dialysis since August, he no longer does the stage shows he loved and built his decades-long career on.
“There are days when you drag. I go home and I just can’t get out of my own way, kind of thing. But there are days I go home and I do all the housework,” he said. “I’m not well enough to go out and do a job, but as soon as I get better I can start working. I’m looking forward to going to work.”
Edwards’ kidney failure is the result of diabetes, even though his diabetes was well under control. He’s lost 60 pounds since he started dialysis and has about five more to lose before he can be placed on a transplant list. Until he can work again, his wife supports them with her job at Butler Bros., an industrial supply company in Lewiston.
As with other dialysis patients, Edwards has to deal with the cost of the procedure. Dialysis costs, on average, tens of thousands of dollars a year, making it extremely difficult for some people needing the life-saving treatment.
Insurance covers most of Edwards’ dialysis, but the couple still has to pay $500 per session, or $1,500 a week, for the treatment. Last month, friends hosted a big benefit spaghetti supper and magic show for Edwards. They raised about $3,700 — enough to pay for two-and-a-half weeks.
Others are eligible for Medicare, the taxpayer-funded health insurance plan for people who are elderly or disabled. In 2015, 977 Mainers on Medicare had chronic kidney disease, according to the National Kidney Foundation. On average, dialysis cost Medicare $84,450 a year per patient.
One answer: early intervention
Experts say the best way to curb the need for dialysis in Maine is to slash the state’s rates of obesity, diabetes and high blood pressure. But that will take time.
In the meantime, many centers are trying to improve patients’ quality of life by promoting home dialysis, which eliminates the need for travel and can be done overnight or when it’s more convenient to the family. But patients are often responsible for their own treatment at home and that makes them leery.
“I would have to do it every night. And to me, I just would rather keep my medical stuff separate,” Thompson said. “I’d rather have somebody with medical experience taking care of me rather than bothering my husband. If something goes wrong, I don’t want him to have to panic and figure something out.”
Her local dialysis center, in Bath, currently has only early-morning slots available, which would interfere with Thompson’s job. If an afternoon slot doesn’t open by the time she needs dialysis later this month, she’ll have to rearrange her work schedule or travel to the next closest center with an opening in Lewiston, Auburn or Augusta.
Some dialysis centers are also promoting chronic kidney disease programs that teach patients about kidney care and their treatment options before dialysis becomes imperative.
DCI runs one such program, but it’s small and not well funded. And most patients aren’t referred to it until they’re in the later stages of kidney disease rather than earlier, when it could have helped them put off the need for dialysis.
“So they’re on the cusp of actually starting some form of dialysis. … It’s better than them just dropping in, but yet if we could have taught them different life skills, different diet, different things, maybe, when they were Stage 2, maybe they wouldn’t have progressed this quickly to Stage 4,” said Shaw.
She believes the state needs more chronic kidney disease programs.
“I know there are patients kind of tucked in the woodpile someplace that nobody’s watching,” she said.
In Auburn, Lopez’s kidneys have little to no function left. She’s been on the transplant list for about three months.
She feels fortunate that her employer has been willing to work around her dialysis schedule. She feels lucky her little girl is responsible enough to get herself off to school two mornings a week. She’s happy that she’s healthy enough for right now.
“I’m trying to be independent and not be a burden to society. I’m trying to take care of my child without asking for help, without bothering other people,” she said. “You know what, I’ve been very fortunate. I really have. Nothing has happened, everything has been going really good. But it has been difficult.”