16 surgeries later, transplant within reach for second-generation dialysis patient
By By John M. Gonzales, j.gonzales@usc.edu
Friday, July 22, 2011
In a room at Los Robles Hospital & Medical Center, Sheryl Glatt lay with 40 surgical staples climbing her withered thigh, and a lower leg undergoing a battery of attempts to save it from amputation.
She is 50 years old, 97 pounds, and a second-generation kidney disease patient, who like her father contracted the illness in her prime. They both suffered an inevitable health decline after extended stints on Medicare-financed dialysis.
Statistics kept by the United States Renal Data System say a dialysis patient of Glatt’s age, sex and race can expect to live an additional 5.9 years. But the numbers are at odds with a woman so full of life that she has endured 15 surgeries with a smile that wavered only when she reached the closure offered by a 16th.
“I remember what it was like to walk out the door, exercise, and dance. But I can’t have that right now,” Glatt said after one of the early operations to relieve neuropathy, a condition suffered by many diabetic kidney patients in which sensation is lost in the extremities.
The procedures at the Thousand Oaks hospital began in January and sought to restore feeling in her lower left leg; taking healthy tissue and arteries from her thigh and transplanting them to the threatened area. Meanwhile, she remained on dialysis and at the top of the standby list at Cedars-Sinai Medical Center in Los Angeles for a kidney and pancreas transplant that could triple her life expectancy to a precious 19.2 years.
“I know God’s timing is perfect. He’s going to orchestrate the whole thing,” Glatt, of Simi Valley, said with her characteristic smile.
Glatt’s story documents the physical and psychological toll of dialysis across two generations. It’s emblematic of the upside down nature of a Medicare system that currently pays for a lifetime of dialysis benefits, yet only covers medications vital to kidney transplant patients for 36 months.
“My dialysis days are wasted days,” said Glatt, who began dialysis last winter.
$8.6 billion medicare benefit
Since 1973, the federal government has paid for dialysis, an $8.6 billion a year Medicare benefit that is at once life-sustaining and life-shortening. Patients like Glatt forfeit at least three days a week to the blood cleansing sessions and accompanying fatigue, as their bodies deteriorate from illnesses associated with kidney disease.
Her mother, Lois Rosenfeld, was recently at her hospital bedside, as she has been every day since Glatt was admitted. The women explained that Glatt’s father, Neal Rosenfeld, was among the first patients to receive the benefit nearly four decades ago.
Before then, dialysis was for the wealthy. Transplants were in relative infancy and 60 percent failed within a year.
There is no question the Medicare benefit prolonged Neal Rosenfeld’s life, and hundreds of thousands of lives annually, including his daughter’s. It also led to the creation of a taxpayer-funded market for profitable dialysis treatment centers.
There were 12 such dialysis facilities when the benefit began in the 1970s. There are more than 5,000 now, according to the Medicare Payment Advisory Commission, a congressional auditor.
Two companies combine to own and operate 60 percent of the dialysis centers in the United States — DaVita, based in Denver, and Fresenius Medical Care of North America, a Massachusetts subsidiary of a German firm.
But center operators are not the only players in the business, and perhaps not the most influential. Medicare pays billions a year to providers of the anemia drugs that are administered during dialysis sessions, including some $2 billion annually to Amgen of Thousand Oaks.
U.S. dialysis system’s poor record
Despite the government’s enormous investment, the U.S. dialysis system that these companies control has an alarming record, generating some of the worst survival rates in the industrialized world. The mortality rate for first-year dialysis patients in the U.S. is approximately 30 percent, according to the U.S. Renal Data System.
Some experts say that’s because U.S. dialysis patients are sicker to begin with than patients abroad. Other experts believe it is because the U.S. uses a one-size-fits-all system dictated by business interests. In any event, the death rate is still a third higher than Europe’s and nearly three times higher than Japan’s.
“If you try to normalize for all those things, it still looks like some other countries do, in fact, do better,” Kent Thiry, CEO of DaVita, told a trade magazine. He said he is working to reduce the mortality rate.
The drugs used at dialysis centers are also under scrutiny.
The U.S. Food and Drug Administration found last month that Amgen’s Epogen and Aranesp products had been prescribed to patients at recommended dosages that increased risk for heart attack and stroke.
For patients with chronic kidney disease, both those on dialysis and those likely to go on dialysis, the regulators urged doctors to reduce levels as they relate to hemoglobin levels. In some cases use should be interrupted, said the FDA.
Dr. Roger M. Perlmutter, executive vice president of Research and Development at Amgen, said the company supports the new FDA guidelines, which will be placed on its drug labels.
“The revised label also provides physicians with more individualized treatment,” he said in a company press release.
Glatt has received Epogen throughout her dialysis stint.
“It’s a thousand dollars a shot,” she said, after looking at her insurance bill. For now, it’s covered by her husband’s private provider but the insurance companies automatically transfer all costs to the Medicare entitlement after 30 months of a patient’s kidney failure.
Family dialysis history
Sheryl’s father, Neal Rosenfeld, was not only among the first to receive dialysis, he was among the first to receive home dialysis. The patient is hooked up at home to bulky blood cleansing equipment that resembles a dentist chair with plastic fluid drums alongside. A caretaker, often the closest family member, administers the sessions.
“Mom was trained to hook up dad. Back then, every other day for six hours,” said Glatt.
Lois Rosenfeld would get home from work at an insurance company, and start her husband’s treatment at 7 p.m. It would continue until 2 or 3 in the morning.
Neal Rosenfeld kept that dialysis schedule so he could work days as an aerospace subcontractor.
But after more than a year of the treatment and steady weakening of his body, he opted for a kidney transplant, an exceedingly risky procedure at the time.
“It was better than a life being tied to a machine,” said Lois Rosenfeld.
True to the low rate of success in the past, Neal Rosenfeld’s transplanted kidney began to fail within a year. He died at age 47.
“I never even thought about it being hereditary,” Lois Rosenfeld said of her husband’s health problems.
But diabetes, which often leads to kidney failure, can be genetic, and that caught up to Sheryl Glatt at times that were otherwise filled with joy.
She was first diagnosed at age 27, contracting gestational diabetes while carrying her first son, Neal. The illness reappeared after the birth of her second boy, Ryan. Common to pregnant women, gestational diabetes usually disappears after the natal term.
But with Sheryl’s genes, it led to advanced diabetes, neuropathy, kidney failure and the dialysis chair. Her mother has told Sheryl she would like to administer the treatments at home.
“I did it once,” said Lois Rosenfeld, 73. “I can do it again.”
But Sheryl has done all she can to ensure that her mother does not become a dialysis caretaker for father and daughter.
“I have to give her a break so she can have a cup of coffee outside on the patio instead,” Sheryl said.
The 16th surgery
The neuropathy took away feeling in her feet, so Sheryl had special hand controls installed in her car. That worked until Glatt’s neuropathy got so severe she had to go to the hospital for restoration of circulation.
There are nine physicians providing care to Sheryl, from a primary care doctor to a vascular surgeon, to a pain management physician.
And there is an exceedingly better prognosis for her than there was for her dad. Kidney transplant success rates now approach 90 percent, according to current statistics.
The problem is getting there.
Glatt’s insurance company, which she did not want to name, refused to cover her hospital stay during a short gap between procedures. Doctors were forced to move her, and as they predicted, a transplanted skin flap broke. They gleaned more skin from Glatt’s thigh as a replacement.
After the procedure, for the first time, her smile faded.
Weeks later, she developed the infection in her heel, attributed by doctors to her diabetes, which weakens her immune system enough to defeat her antibiotic medications.
On June 29, she underwent her 15th procedure, in which the infected area was scraped from bone in her heel. Doctors told her if the operation failed, she would lose her lower leg.
In a frustrating scenario, if her leg is lost she can claim permanent disability post-transplant and receive a lifetime of anti-rejection medication benefits. If her leg is saved, she will no longer be classified as disabled. She could join kidney transplant patients nationwide who must scramble for the medications that keep the organ functioning after the 36-month government benefit runs out.
Glatt will be covered, but at a profound cost.
The procedure to glean infected bone resulted in damage to a 1.5mm artery in her threatened lower left leg, said Dr. Kenneth Leong, the surgeon who performed the operation under a microscope.
Presented with the option of pulling another artery from her healthier right leg, and risking permanent damage there, Glatt decided her 16th procedure would be amputation.
As she waited to inform doctors of her choice, she underwent a four-hour dialysis session that slowed her speech and finally stole away her smile. It was capped by a shot of Epogen under the new FDA guidelines.
When Dr. Leong and plastic surgeon Dr. Mark Suski arrived, Glatt told them: “I think I’ve gone as far as I can go.”
But Glatt was bolstered by a talk with Carol Sanders of Moorpark, a regular hospital visitor who lost her leg to a car accident 25 years ago. She showed Glatt how her prosthetic so closely resembled her natural leg.
Sanders held up the stump that has developed over the years into a strong fit for different versions of the prosthesis: one for diving; one for walking; one for formal wear that includes a 2.5 inch heel.
“I want a Barbie leg, and you don’t even have to shave it,” said Glatt.
The amputation took place on July 3, below the knee, mid-calf. Glatt was told by doctors that her transplant status would not be affected, though first she will have to undergo months of therapy in preparation for her new leg.
She said when she leaves the hospital she’ll continue a dialysis support group that she founded before her surgeries began. And she just might work to improve the 40 years of Medicare policy intertwined with her family narrative.
“Maybe I’ll be one of those people that goes to Congress,” she said. “And fights, and gets enough attention to change things.”
Follow our ongoing coverage in this series here.
http://www.vcstar.com/news/2011/jul/22/kidneypackage/http://www.vcstar.com/news/2011/jul/22/16-surgeries-later-transplant-within-reach-second/
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