TEANECK - When Ruth Gottscho died from kidney disease in 1960 at age 15, her parents were determined to help others suffering from the same disorder. In that same year, Eva and Ira Gottscho established the Ruth Gottscho Kidney Foundation.

Dialysis, which would have saved Ruth’s life, was then in the experimental stage, said Ruth’s sister, Judy Gottscho Eichinger, a 32-year Teaneck resident. But even when dialysis became available a few years later, it was expensive and, until Medicare began funding it in the 1972, not obtainable to every patient who needed it to stay alive.

One of the foundation’s first programs was to buy more than a 100 dialysis machines and to loan them to patients and train their families in home dialysis. When a patient no longer needed the machine - either because he or she had died or had received a transplant - it was returned and loaned to another family.

After Medicare began funding dialysis, the foundation turned to other services, including subsidizing medication and transportation for patients who could not afford these costs, which are not covered by Medicare. But the foundation’s major focus has been to help children with kidney disease experience summer camping.

"My sister always dreamed of going to camp but because of her illness, she could not," said Gottscho Eichinger, chairperson of the Foundation. "She was very jealous when her friends and I went to camp."

Summer camp was important to her family, Gottscho Eichinger said. Her parents originally met as counselors at a camp.

Beginning in 1972 Eva Gottscho began seeking a camp that would mainstream children with kidney disease into the regular camp program. (Ira Gottscho died in 1971.)

"There were a number of programs that were devoted to particular illnesses, but a camp where children with kidney disease would share the same activities as regular campers was unheard of," Gottscho Eichinger said.

When no camp in New Jersey was willing to start such a program, Gottscho approached Frost Valley YMCA Camp in the Catskill Mountains.

"They were eager to do it. They have always reached out and done new things in camping," Eichinger said.

...

Harvey Mysel hands out business cards. David Goldman has a YouTube video. And there are other people, working hard, spreading the word as creatively as they can, because they’re in the business of saving lives -- sometimes their own.

Five years ago, Mysel had a successful kidney transplant. But then he developed a virus infection and the organ deteriorated. Last month, he was back in a dialysis clinic at Highland Park Hospital, hooked up to a machine that does the work his kidneys can no longer do.

What’s ironic is that Mysel heads an organization devoted to educating people about living kidney donations. He sarted the group five years ago for other people.

"Never in my wildest dreams did I think I would be looking for another donor," he said. "I thought I would have longer time with that kidney."

For David Goldman, the story began when he was diagnosed with diabetes as a baby. By the time he was in his early 30s, his kidneys had failed and he got a transplant.

Still, he considers himself fortunate.

"Transplanted kidneys only last so long, and 25 years is a long time," he said. "So I’m very lucky."

Both men said the perception remains that donor kidneys need to come from people who have died, and who specify that they want their organs available for donations.

But the truth is, they said, someone reading this article can sign up to be a donor.

Mysel’s organization is called Living Kidney Donors Network, and he said most people aren’t knowledgeable about living donation, believing there's a "million-to-one odds" they would be able to donate.”

But his group’s workshops and webinars explain that immunosuppression drugs are now so effective that matches no longer have to be perfect.

Still, it can be a long process: Goldman has been on dialysis for 17 months, despite a dozen offers of donation; some from complete strangers. Some potential donors weren’t healthy enough for surgery, and others weren’t a good enough match.

His quirky video remains posted on YouTube with a simple plea: You’ve got two kidneys, so how about one for him, and one for you?

Harvey Mysel, however, got incredible news on Tuesday.

A 43-year-old father of four, who had decided to make what’s called a non-directed match, had been approved to donate his kidney to Mysel. They met for the first time earlier this month, and Mysel’s surgery is already scheduled in June.

He said his campaign to educate people about living donation has allowed him to see just how often the charity of strangers literally saves lives, and now it’s his turn.

"I’m not surprised, but it’s been a pretty good few days," he said.

...

Teresa Gaytan’s children wanted her to come home.

The 65-year-old mother of five had been living for about a year in a nursing home, dealing with congestive heart failure and kidney failure. But her five children -- all adults -- wanted to care for her themselves. After making arrangements for outpatient treatment at a local dialysis center, they were able to bring her back to the home where she’d raised all her children.

"It was just... complete," said her daughter, Angela Gaytan. "We were able to eat together, laugh together. It’s the sense of being complete with her there."

Gayton needed dialysis three days each week, so her children arranged for her to get treatment at Fresenius Medical Care in Berwyn. She'd gone for two treatments during her first week home, and on March 5, 2009, she went in for her third.

"About three hours later, we got a call," her daughter recalled. "They said they were rushing my mother to the hospital. I asked what happened, and they wouldn’t tell me.”

The family went to the hospital to find their mom completely unresponsive.

"I remember the doctor sitting down and just putting his head down, and he said something had gone terribly wrong with her dialysis at the center," said Angela Gaytan.

Two days later, she said, the doctors confirmed there was nothing more that could be done, and the family took their mother off of life-support. She died on March 10th, 2009.

"We would try to call the facility to get answers from them because obviously something happened there. ...  They weren’t giving us answers."

So the Gaytan family sought out Chicago attorneys Joseph Lopez and Mark Parts, who ended up filing suit against Fresenius Medical Care. Through discovery and depositions, they pieced together a narrative of what they believed happened to Teresa Gaytan, which they outlined in their Second Amended Complaint in their lawsuit.

According to the Gaytan family’s complaint, there were a series of mistakes which led to the woman's death: A patient care technician did a reversal of her dialysis lines (which he was not qualified to do); the lines weren’t secured properly and Gaytan began hemorrhaging, and then the alarms -- which were supposed to signal that something was wrong -- were ignored.

"There were many, many mistakes," said Parts. "But even among those many mistakes, if somebody had done something at one step of the process along the way, that could have turned the whole thing around."

Fresenius Medical Care would not comment on Teresa Gaytan’s case, citing privacy concerns. The company eventually came to a seven-figure settlement with the Gaytans, but admitted no wrongdoing.

For families like the Gaytans -- trying their best to figure out where to send a loved one for the complicated process of dialysis -- ProPublica’s dialysis facility tracker gives information on mortality statistics and infection rates. It spells out information and statistics that the government has collected for years from dialysis clinics, but never made public until ProPublica pushed to get it a few years ago.

But physicians and nephrologists repeatedly stress that a kidney patient needs to consider far more than just these statistics. They point out that getting dialysis is not like buying a car or a house, where you can compare miles per gallon or room sizes and simply choose the "best."

Dialysis involves all kinds of variables, including how sick you are, where you live, what kind of insurance you have, how old you are, and your likelihood for getting a kidney transplant.

According to several nephrologists that Unit 5 consulted, all those factors can mean that the best clinic for you is not necessarily one of the "top" clinics on ProPublica’s tracker.

The Fresenius clinic in Berwyn, where Teresa Gaytan went, currently ranks about average for mortality and infection rates in the most current figures posted by ProPublica. The Fresenius corporation owns dozens of dialysis clinics in the Chicago area, and while a few of their clinics have relatively high rates of mortality and infection, several Fresenius clinics have some of the lowest death and infection rates in the area, according to the figures published by ProPublica.

For example, Fresenius' dialysis clinic in Chicago's Garfield neighborhood ranks well on ProPublica’s tracker. It is run by Dr. Brian Duffy, who points out that he has his offices inside his dialysis unit, so he is able to see his patients as often as 12 times a month.

But Dr. Duffy points out that every doctor will have a slightly different way of running a dialysis clinic.

"It’s my setup, where we see them all the time," he said. "I know there are other practitioners that have nurse practitioners or physicians’ assistants who will communicate with [the doctors] as to what the situation is. So Fresenius doesn’t mandate any number of visits. ... It’s really what the physician thinks is appropriate."

In the end, that appears to be the best way to use ProPublica’s tracker as well – as one more tool to share with your doctor, as you decide together what the most appropriate dialysis facility is for you.

That’s something Angela Gaytan said she’d advise anyone in her situation trying to do the best for a loved one who needs dialysis.

"Just do your homework," she said. "Don’t rush."

...

The Illinois Department of Public Health keeps records of dialysis center inspections, which are supposed to be done at least every three years for every dialysis facility in the state.

The inspections can cover anything from sanitation practices in the center, to equipment issues, to training.

Attached, for example, is the most recent report for Fresenius Medical Care in Berwyn -- also known at the time as RCG Midamerica -- which is the center where Teresa Gaytan was getting her dialysis treatments when she died. The report is from December 2009, about nine months after Gaytan was there.

Although these reports are not readily available online, they can be requested under the Freedom of Information Act.

Below is a sample letter you can use to ask for a report. Just fill in the specific information for the Illinois facility for which you're seeking information, and send it to the address mentioned in the letter:

Freedom of Information Officer
Illinois Department of Public Health
535 West Jefferson Street
Springfield, Illinois 62761-0001

To whom it may concern:

This is a request under the Illinois Freedom of Information Act and the U.S. Freedom of Information Act.

I would like a copy of the most recent inspection report for the following End Stage Renal Disease Facility (dialysis center) located in Illinois: [Add the name and address of the dialysis facility here].

You may send a copy of the above-referenced inspection report to me at [add your name and address here] or – alternatively – I would be happy to accept the records electronically.

If you have any questions concerning this request, please feel free to contact me at [add your e-mail and/or phone number here]. Thank you in advance for fulfilling this request.

Sincerely,

[Your name here]

...