Funding kidney research


Entertainment lawyer Ken Kleinberg was hospitalized for five weeks when he became seriously ill in 1999. His doctors eventually diagnosed him with kidney disease, but they couldn’t find a cause.

“It was the eve of the millennium and I thought: How is it we do not understand this?” said Kleinberg, whose clients include Jack Nicholson, Mick Jagger and Keith Richards.

An aggressive recurrence a year later nearly killed Kleinberg, forcing him back into the hospital for 13 weeks. At one point, medication damaged his skin as well as his white blood cells. 

During weeks spent in medical isolation, he thought, “If I recover from this, I will make sure to advance this research.”

Kleinberg, 70, made good on his promise in 2002. Working with Dr. Vito M. Campese, professor and chief of the division of nephrology and hypertension at the Keck School of Medicine of USC, he founded the University Kidney Research Organization (UKRO) to support medical research that prevents, treats and cures kidney disease. He currently serves as its president and director.

The American Society of Nephrology indicates that more than 80,000 people die each year from chronic kidney disease (CKD), making it America’s ninth leading cause of death. There are more than 20 million Americans — one in 10 adults — with some form of CKD, a condition that leads to reduced kidney function over time, and many are unaware they have it, according to the National Institutes of Health’s National Kidney and Urologic Diseases Information Clearinghouse.

Current treatment for CKD involves either transplant or dialysis. Both are costly and pose risks for the patient. Dialysis can replace only about 10 to 15 percent of the kidneys’ filtering capacity, and two-thirds of dialysis patients have a life expectancy of less than five years, according to the American Society of Nephrology.

Campese says that that even after transplants, patients must take expensive immunosuppressant drugs to prevent their bodies from rejecting the new kidneys, and they are sometimes hospitalized to prevent and treat possible complications. Statistics from the Congressional Kidney Caucus show that Medicare spends $106,373 per patient in the first year of a kidney transplant and $16,844 annually thereafter. 

Dr. Vito M. Campese

Still, treatments for kidney disease today are much better than they were in the past, and Kleinberg says knowing how much treatment has improved recently has made him a firm believer in current medical research. 

The first successful use of dialysis in treating kidney disease occurred during World War II. In the 1960s, most communities still did not have dialysis machines, and those that did formed committees to decide which patients would receive access to the limited number of machines. Now there are several major suppliers of dialysis machines to the United States, and patients can do dialysis from home with more effective and less expensive machines.

“As a result of these changes, [kidney disease] was no longer a death sentence, but a chronic illness,” Kleinberg said.

However, in many cases, such as Kleinberg’s, the cause of CKD remains unclear, and no cure exists besides transplantation. To encourage scientific research for kidney disease, UKRO gives seed grants to new projects in order to gather data necessary to qualify for larger grants. In 2010, UKRO granted $60,000 each to three special projects, one of which studies how small interfering RNA affects renal failure and hypertension.

Kleinberg says that donors to kidney foundations sometimes think their money will go to research when in fact it funds other activities, such as awareness campaigns.

“There is a lot of misinformation about who is doing research,” he said.

In the United States, diabetes and obesity are responsible for 70 percent of kidney ailments. Inherited conditions, injuries, infections and drugs can also damage the kidneys. Kleinberg says people with kidney disease often are unaware they have it. 

“They call [kidney disease] a silent killer, because all the sudden your whole internal system goes bad,” he said.

UKRO CFO Ronald Taubman experienced renal failure and was on dialysis for about 10 years after living for more than 40 years with Type 1 diabetes. (Fluctuating blood sugar levels associated with diabetes erodes kidney function.)

“Dialysis is a godsend, but there are many people who just do not survive on dialysis,” he said. “It is very hard on the body.”

Taubman nearly died twice during his years on dialysis, and long stretches of time spent with a needle in his arm led to infections. He slipped into a 10-day coma when his brain swelled. 

“Kidney transplants usually last for only eight years on average,” Taubman said. 

In Kleinberg’s case, there were emotional challenges in addition to the medical concerns when he underwent a successful kidney transplant in 2007. 

“Even after someone receives a transplant, the kidney can fail,” Kleinberg said. “I was afraid to accept a transplant from my family.” 

Ronald Taubman

He did not think he could live with the guilt if he asked one of his children to give up one of their kidneys and his body destroyed it. Eventually, a transplant became available.

Kleinberg, who still doesn’t know what led to his kidney disease more than a decade ago, is optimistic about the current discussions about health among public leaders. 

“You see the first lady making children’s nutrition a priority, and it is becoming socially important to do certain things … like stopping kids from drinking soft drinks, and removing the amount of salt and sugar in foods and removing artificial enhancements from food, which are certainly not good for the body. All this is coming of age right now.”

He’s optimistic about the future of kidney disease research. Stem cells appear to be a particularly promising area of kidney research, Kleinberg said. In the future, patients with CKD might be able to use their own stem cells to grow new kidneys that will be perfect matches for their bodies, bypassing the need for antirejection drugs. 

“They have grown a bladder from stem cells and have done work in correcting heart valves, but the kidney is large and complex,” he said. “It is a matter of time, money and effort. … Eyes, hearts, and brains are more difficult, but eventually they will get there. This is the reason why I felt the need to start a research organization.”

To learn about kidney disease, prevention, treatment and current research, visit ukrocharity.org.

A Kidney for Chana


 

Chana Bogatz is 5 years old, and she loves cutting and pasting paper, playing with her brothers and sisters and having “Happy Birthday” sung to her.

In those ways she is a normal child, in other ways, she is not. She has never eaten food through her mouth — only through a feeding tube inserted in her nose. Her hair is long but patchy, and her face is bloated. She is the size of a 3-year-old. She speaks in half-words, not sentences, because she has never been to school, so her vocabulary is underdeveloped. She has spent most of her short life in hospitals. And if she doesn’t find a kidney, she could die.

This month, Chana’s parents, Yehudis and Moredechai Bogatz, launched a citywide appeal to find someone who could donate a kidney to their daughter. Neither of them have the blood type necessary (type O) to make them potential donors, but they are hoping that someone will respond to the “Save Chana” flyers they have hung in shop windows all over the Jewish areas of Los Angeles or the savechana.org Web site they have set up, and be inspired enough to help Chana.

“If she gets a kidney, she is going to have a normal life,” said Yehudis Bogatz, who moved to the United States from Israel four years ago. “She is a very smart kid even though she has had a lot of complications, [but once she has had the transplant] she will be able to go to school and learn and do things.”

Chana is one of the estimated 60,000 people in the United States waiting for a kidney transplant, and one of 14,313 in the Western states. The need for kidneys has doubled in the past 10 years, according to Dr. Robert Metzger, president of the Organ Procurement and Transplantation Network. Statistically speaking, two-thirds of those in need will be on the waiting list for two to five years before a matching kidney becomes available on one of the national organ donor databases, like the United Network for Organ Sharing (UNOS). The kidneys registered on these databases generally come from cadavers.

But those wanting to bypass UNOS can attempt to find a living donor. Since a donor’s remaining kidney will perform all kidney functions, there is little risk involved for the donor. There is also a greater chance that the recipient’s body will accept the kidney, because there can be a better tissue match between the living donor and the recipient than there could be between a cadaver and the recipient.

The Bogatzes’ attempt to find Chana a kidney is the latest chapter in her long and difficult medical history. Three weeks after she was born, she was diagnosed with a sole, malfunctioning kidney. She began dialysis when she was 3 months old, but at 10 months, the veins used for dialysis were exhausted and could no longer sustain the treatment. At that point, the Israeli hospitals could do no more for her and, on one day’s notice, the Bogatzes moved with their six children — a seventh has been born since — to Palo Alto, Calif., so that Chana could receive treatment at Stanford Medical Center.

In 2001, she received an infant cadaver donor kidney, which was meant to be a “bridge” until a regular kidney became available. For a short while, the kidney worked, but after a year, it failed and she needed to continue dialysis once again. She was in dialysis for 20 hours a day. But eventually she lost the ability to respond to the dialysis. Last year, the Bogatzes moved to Los Angeles so that Chana could receive treatment at UCLA Medical Center.

Although her life is spent in and out of hospitals, Chana does as best she can. While on dialysis, she takes her scissors and paper and sits quietly amusing herself by cutting. She always pulls up her sleeve to show her doctors her one remaining “good” vein so they can poke it with their needles. She was — and still is — conscious and proud of the feeding tube in her nose, and will run to get either parent to put a new bandage on it if it starts to become loose. She also learned how to adjust the various tubes and catheters going in and out of her body, often surpassing her mother’s knowledge of how to work them.

For the Bogatzes, coping with their daughter’s illness has meant many changes to their lifestyle. In Israel, both Moredechai and Yehudis Bogatz worked as high school teachers. In addition, Yehudis wrote and produced plays for the school she taught at, and wrote a book titled “No Different Than You” (Feldheim) about Yehudis’ sister, Shevi, who died of kidney failure one year before Chana was born.

Both parents have yet to secure gainful employment — Moredechai Bogatz can’t speak English, and even though Yehudis Bogatz did start working as a teacher, the demands on her time ferrying Chana to and from the hospital made regular employment impossible. They live in a two-bedroom house in the Fairfax neighborhood, and rely on the support of organizations like Chai Lifeline and Tomchei Shabbos to meet their needs.

Now the Bogatzes main focus is making a happy home for their children, have them love each other and be proud of Chana. They see the illness as a blessing, and they try to focus and draw strength from positive things.

“When I first heard I had a sick baby, I was crying and crying, but my goal was that my family shouldn’t fall apart,” Yehudis Bogatz said. “So things don’t have to be perfect by me — I don’t care if the house is messy — as long as the kids are happy and Chana is happy, and that we are all together.”

For more information on Chana Bogatz, visit www.savechana.org, or call (800) 728-3254. Suitable donors must be between 18 to 45 years old, have type O blood and be in good health. There is no cost to be screened and donor’s medical expenses will be fully covered.

 

Just the Right Size


This is a heartwarming story about a kidney.

The kidney in question belongs to Mike Jones. It used to belong to Patricia Abdullah.

Jones and Abdullah have very little, apparently, in common. Jones is an African American man. Abdullah is a female descendant of the Hawaiian royal family. Jones is Christian. Abdullah is Muslim. Jones lives in the city. Abdullah lives in the Valley.

They’re a perfect match. Sometimes you just have to stay positive. O-positive.

Jones and Abdullah met during a success seminar. When Jones announced he would have to be late to one session because of his ongoing need for dialysis, Abdullah and other classmates got involved. After five years of dialysis, Jones was desperately in need of a transplant.

For one assignment in their seminar, Jones and Abdullah learned how to successfully make what are considered “unreasonable requests.” During the in-class exercise, Abdullah shocked her partner: She said “I’m O-positive, Mike. Make an unreasonable request of me.” Jones, also O-positive, took a moment to realize what she had said, then put the seminar lessons to work and made an unreasonable request: “Will you give me one of your kidneys?” So she did.

Still, all did not run smoothly. But a fellow classmate, an administrator at Cedars-Sinai Medical Center, helped work out insurance problems. Cedars-Sinai’s Dr. Gerhard Fuchs alleviated Abdullah’s concerns about missing weeks of work at her new job by removing the organ laparoscopically, requiring only small incisions. Dr. J. Louis Cohen transplanted the healthy new kidney into Jones.

And so a Muslim’s kidney is transplanted into a Christian’s body in a Jewish hospital. Both patients were recovered and healthy within three days, so the kidney doesn’t seem to mind. And according to Abdullah, “Both of our families are going to get together for a group photo. And that’s going to be our Christmas card.”