Grady dialysis patients emotionally exhausted

http://www.ajc.com/news/atlanta/grady-dialysis-patients-emotionally-279664.html

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By Craig Schneider and Shelia M. Poole spoole@ajc.com
The Atlanta Journal-Constitution

The joy of that 2001 trip collapsed when Olaleye-Abner passed out at a friend’s house in Gwinnett County. She was diagnosed with kidney failure. After that, the outpatient dialysis clinic at Grady Memorial Hospital became her medical safety net. She can’t afford to pay for her own care and does not qualify for government assistance.

In October of last year, her safety net gave way. The financially strapped hospital, struggling to cut costs, closed the outpatient dialysis clinic.

Grady’s decision to close the clinic has sent about 50 of its patients into a medical care limbo. Most were illegal immigrants with little money and no government aid. Olaleye-Abner actually has a green card and is married to an American, but not long enough to qualify for citizenship or Medicaid.

Emotionally exhausted

The patients of Grady’s outpatient dialysis clinic have been through emotional extreme after emotional extreme. After the October closing of the clinic, Grady offered to pay for three months of dialysis treatments at a private clinic called Fresenius. That reprieve was to expire Jan. 3. Grady extended the deadline to Feb. 3. That’s less than two weeks away.

Again and again, the patients have had the end of their treatment in sight, and each time that deadline has been extended. Their drama has played out in newspapers and news shows. The New York Times has cast them in the center of the nation’s debate on the role that safety net hospitals should play in the care of illegal immigrants.

But the patients are just a group of frightened people. They know their lives could change drastically soon, but they don’t know when. Many say they are emotionally exhausted. They don’t know what to do, they have nowhere to go, and they don’t want to die.

“It’s so much emotion, it’s so much stress,” said Olaleye-Abner, sitting in her College Park apartment with her husband, Duncan Abner. “Every day I don’t know what’s going to happen.”

Grady officials say they are doing all they can to help the patients. The hospital has offered to relocate patients to their home country, or to another state where they have a better chance of government aid.

Olaleye-Abner, 43, said she can’t go back to Nigeria because medical care there is decades behind the United States.

“People there with this problem die within a short time,” she said.

Moving to another state, she said, is too difficult. She is sick, often weak. She can hardly make a fist. Her husband, a diabetic who also receives dialysis, had most of his right leg amputated about a year ago.

Olaleye-Abner works part time as a home health care nurse. She pays taxes, said her husband, defending his wife’s right to care.

The couple met at the Grady dialysis clinic. He receives Medicaid.

“She’s such a giving person. So respectful and so honest,” Duncan Abner said.

Making choices

The dialysis patients see their options running out. They have appealed to Grady to reopen its dialysis clinic, to no avail. They sued the hospital in Fulton County Superior Court, asserting patient abandonment. That case was thrown out, but they are appealing. They recently reached out to an international human rights group to take their side.

Mostly they are hoping that the Feb. 3 deadline does not hold, that Grady extends it again. They know that Grady has contracted with Fresenius to provide for patients as long as September. But the patients signed their own contracts with Grady that said the hospital would stop paying the bill on Jan. 3.

After Feb. 3, the hospital will consider the continuation of treatments for patients on a case-by-case basis, Grady spokesman Matt Gove said. He said the hospital may take into consideration whether a patient is trying to find their own long-term care elsewhere, and whether they live in Fulton or DeKalb counties, which provide financial assistance to the hospital.

The patients are very aware that since most are illegal immigrants, they don’t generate a lot of public sympathy.

Bineet Kaur, a 26-year-old patient who lives in Alpharetta, said she never wanted to burden anyone. When she was first diagnosed with kidney failure in 2003, about three years after coming to this country on a visa, she did not seek dialysis. She said she had no insurance and no means to pay for treatment, and she did not want to burden her relatives.

As her kidneys became weaker and less efficient, pain tightened its grip on her body. She started to walk with a limp. Her skin turned a pale yellow. Eventually, even lying in a bed hurt.

Grady, she said, helped restore her life. She was able to go there three times a week. But being an illegal immigrant from India, she could not qualify for government assistance in Georgia.

She received the notice of the October closing while she was on dialysis.

“I started to cry,” she said. “I was seeing my life change.”

If Grady stops paying for care, Kaur believes she would be left to seek care through an emergency room. But those treatments would not be three times a week, as she would have to be near crisis to receive a treatment.

A few of the patients have accepted Grady’s offer of relocating back to their home country, but some have run into troubles.

Monica Chavarria returned to Mexico to live with her mother. She took her 8-year-old son. Her husband remained in Atlanta with their 14-year-old son.

For many of her treatments, Chavarria had to travel two hours to get to a clinic. Recently she was able to receive the treatments at a place about 40 minutes away. She has run out of the three months of treatments funded by Grady, but she has not been able to receive government health care coverage, said her husband Roberto Barajas.

Chavarria, 35, is exploring the possibility of receiving a kidney transplant from a sibling. The family had held fund-raisers for that here in Atlanta, but now she is spending the money for treatments that cost $120 apiece.

The separation has been hard on the family, Barajas said. The couple has been married for 15 years, and hadn’t been apart in years.

Dependence mourned

Three patients have died since the clinic closed in October. Grady spokesman Gove said none died due to a lack of access to care.

Without her dialysis treatments, Anabel Quintanilla said she could die within two weeks. She was diagnosed with a severe form of lupus, an autoimmune disease that attacked her kidneys, nine years after she arrived in this country from her home in Hidalgo, Mexico.

Back there, she was a woman proud of her independence. She was raising a young son.

“With this illness I depend on people like my family to help me with my son, morally and economically,” she said. “I get very sad to see what I am now as opposed to what I was in my country.”

Being an illegal immigrant with little money, she also has depended on Grady. She doesn’t appreciate the way the hospital handled the closing. She believes Grady feels it can push the patients around because most are in this country illegally.

“I believe that even dogs and pets have better privileges in this country than we [illegal immigrants] do,” she said.

Grady officials say they have been considerate in handling the closure, helping people to relocate and extending the deadlines on care again and again.

Quintanilla is uncertain where her future will lead her.

Wherever it is, she said she will strive to remain strong, a fighter.

“I never cry,” she said.

Staff writer Rachel Tobin Ramos contributed to this article.