With IVIG Therapy, Transplant Patients Who Had Little Optimism Are Resuming Active Lives
According to a recently published study, an immune-modulating therapy (IVIG) significantly improves kidney transplantation rates, even among “highly sensitized” patients whose immune systems have previously prevented them from being considered for transplants. Three patients (two from California and one from Hawaii) who once had little hope of receiving a successful organ transplant are available for interviews. With IVIG therapy and kidneys donated by relatives, friends or mere acquaintances, they have been able to reclaim their lives, and they hope to let others know that this option is available.
LOS ANGELES (December 15, 2004) – Under most circumstances, the reopening of Lee and Tamera Walters’ Stockton Bridge Grill in Capitola Beach might prompt nothing more than a local business story or restaurant review.
Kathleen Hashimoto’s plan to run the upcoming Honolulu Marathon likely would draw little more interest than that of her friends and family.
And Jack Strehl’s goal of getting back into the pilot’s seat of his restored Vietnam-era Navy fighter would matter only to his buddies who take off, land and live at Sonoma Sky Park.
Three Patients, Three Stories, Three Lives Restored
But Lee, Kathleen and Jack are among a growing number of people with chronic, irreversible kidney disorders receiving transplanted organs despite once having a very high risk of rejection and only a slight chance of finding a compatible donor. Like thousands of others with “highly sensitized” immune systems that would reject organs donated by the vast majority of the population, they were destined to gradually decline physically while undergoing painful and time-consuming kidney dialysis several times a week for the rest of their lives.
Instead, thanks to an immune-modulating therapy pioneered for transplant recipients at Cedars-Sinai Medical Center, the three patients received kidneys from living donors and are able to lead active lives and again pursue their life-long interests.
Restaurateur in Capitola Beach Faces Kidney Failure
Lee Walters, 45, was diagnosed during his college years with glomerular nephritis, a chronic inflammation of the filtration membranes of the kidneys. Doctors said his kidneys were functioning at a reduced level and he likely would require dialysis at some point in his life.
The native of Tom’s River, NJ, moved to California and got into the restaurant business, which seemed like a natural fit because he had worked in restaurants growing up. “I went to the Sacramento area for a couple of years and then came down to Capitola, which is on the beach,” he says. “I came down here in 1985 and have been here ever since.”
He was there, at the Stockton Bridge Grill, when Tamera came in as a customer. They now own that restaurant and Caffe Lido down the street, where they both work. The couple married in 1988 and have two children, Lucy, 10, and Cooper, approaching 13.
As predicted, Lee’s kidneys did fail and his health declined rapidly in 1992. He spent a short time on dialysis before receiving a kidney donated by his sister. Unfortunately, the new kidney failed after eight years. To make matters worse, finding a compatible donor was virtually impossible and the risk of rejection was extremely high because his body had built up high levels of antibodies as a result of the previous transplant.
Lee went back on dialysis, three days a week, in 2001. But dialysis does not remove impurities as efficiently as a functioning kidney, and the process itself is long and tiring. Lee and Tamera focused their attention on little more than simply getting by, although Lee continued to work.
Long-term dialysis means surviving but not thriving
“I don’t think he ever really realized the impact that his renal failure had on our family because he was either sick or tired all the time. The kids and I picked up the pieces and we were used to the routine without dad.
Even though he was around, he’d come home and he’d be taking a nap or going to bed early. Because he would take a nap when he’d get home, he’d be awake when we were all asleep at night. It was just like the normal routine. We just didn’t really have a family life,” recalls Tamera, adding that Lee made a point of participating in family activities as much as possible on weekends.
“It was really important for him. But as far as the morning, getting to school, picking them up, making lunches, making plans, arranging for a babysitter when Lee and I were both working, that was all me…. It was mostly Monday through Friday that was really tough.”
Lee says his lack of energy forced him to set priorities. “I continued to work full time. So part of it is like, OK, I’ve got to go to work Friday night and Saturday night. If the kids have an event during the day, let’s do that. But I need an hour and a half or so to rest up because I have a five- or six-hour shift ahead of me. So I was always thinking about the work and the energy level. I had to sort of hold back on what we did as a family.”
In October 2003, Tamera and Lee were vacationing in New York and planning to visit family members in New Jersey where Lee was to undergo dialysis treatments. Instead, he developed breathing problems and heart irregularities and ended up in a hospital emergency room.
“It was really scary, and that was the turning point for us,” recalls Tamera. “When we got back from that vacation, I said, ‘I’m going to get you a transplant.’” A friend at a local dialysis clinic had told them about research showing that IVIG therapy was helpful in difficult transplant cases. Tamera sent an e-mail message to Cedars-Sinai, wondering if this therapy might make it possible for her to donate one of her kidneys to Lee.
Within 45 minutes, she received a call from Stanley Jordan, MD, the physician who pioneered the technique in transplant situations.
After a flurry of phone calls and e-mails in December 2003 and January 2004, Lee and Tamera made the six-and- a-half-hour drive to Los Angeles. A lab test devised by Dr. Jordan and his colleagues showed that IVIG therapy probably would be effective in modulating Lee’s immune system, making the wife-to-husband transplant possible.
“Tamera and I both have an incredible amount of respect and thanks to give to Cedars-Sinai and that whole transplant team. What an amazing experience. They took us in, they embraced us. We felt like we were the only patients they had,” Lee recalls. “We met with them the first part of February and once they drew our blood and tested it, they wanted to transplant us within a couple of weeks.”
Lee was eager to receive a new kidney and discontinue dialysis, but the couple needed a few weeks to get organized and prepared for surgery. They already had closed the Stockton Bridge Grill, at least temporarily, and with the prospect of both undergoing surgery, they turned over the Caffe Lido responsibility to Lee’s brother. Meanwhile, Lee’s mom came from New Jersey to watch the kids.
IVIG therapy precedes transplantation
Lee underwent two four-hour IVIG treatments in the weeks before the transplant operation, which took place on March 12, 2004. Both donor and recipient operations proceeded according to plan, with the patients recuperating for five days in the hospital. About six weeks later, Tamera walked a full 26-mile marathon, fulfilling a goal that she says helped speed her recovery.
With his health already compromised and his surgery more involved than his wife’s, Lee’s recovery took longer, as expected. He returned weekly to Cedars-Sinai for checkups and lab work for the first few months. But he noticed almost instant benefits from once again having a functioning kidney.
“I think one thing that was immediately obvious was that my eyes went from being bloodshot to being clear. And that happened in the first two days,” says Lee. “The sense of smell comes back almost immediately, and it is something that you don’t realize that you lose. In dialysis, you lose your taste buds, essentially because your body is polluted; your blood is not clean. My senses are back. My taste buds are good. We’re in the restaurant business, so the sensation of drinking wine and tasting wine is important. For years, I couldn’t even do it. Now, I enjoy it.”
“When the kidney really kicked in, I dropped a lot of water weight and that was a big thing. You start losing this excess weight and get back to your normal weight, then your energy level really increases. I’d say by the third week you really start feeling, ‘Wow, this is what it feels like to be normal and to have a functioning kidney and have the energy to stay up for a 12-hour period as opposed to having to take a nap in the middle of the day.’”
In June, with the continuing support of family and friends, Lee and Tamera reopened the Stockton Bridge Grill, a feat that would not have been possible without Tamera’s gift and IVIG therapy’s existence. “I have a lot of energy, my focus is better, strength is good and appetite is wonderful,” says Lee.
In Sonoma, a life in high gear grinds to a crawl
Until Jack Strehl was diagnosed with bone cancer and kidney failure, he did not know how to slow down. After serving as an infantry officer in Vietnam, the electrical engineer earned his master’s degree in business and moved from the Newark, NJ, area to California. Success in the semiconductor industry bought him an early retirement, several high-priced properties and plenty of high-speed toys.
“I’m one of the old Valley guys. Learned to race cars, fly planes, fly hang gliders – anything to bang myself up,” says the one-time competitive snow skier. “I used to be a pretty good athlete. I got all the way to the Olympic tryouts in Vail, Colorado.”
But in December of 1997, he felt sick and flew from a vacation home in Cabo San Lucas, Mexico back to Northern California to see his doctor. A lab test found that his kidneys were failing. After being admitted to the hospital, he was diagnosed with multiple myeloma.
“I said, ‘Well, just give me some pills and I’ll go home and take care of myself.’ They said, ‘I don’t think you understand. You have to get your affairs in order. You probably have four months to live.’ That really rattles your cage,” says Jack, who turned 65 in August.
Fortunately, through insurance and by liquidating some of his property, Jack underwent an innovative stem cell transplant procedure at the University of Arkansas that cured his bone cancer. But the aggressive treatment and a subsequent case of pneumonia dropped his weight from 165 to 129. Undergoing kidney dialysis three days a week, four hours at a time, he continued to grow weaker and weaker.
“You just constantly lose your energy and your will to live,” says Jack, describing dialysis. “It’s kind of like a slow, methodical death. Toward the end there, I could barely get in and out of the wheelchair and into a seat, and I lifted weights and had a physical therapist. I tried to keep my strength up as much as possible.”
Gift from an acquaintance brings life back from desperation
Because Jack’s brother and close friends were not compatible kidney donors, his name was added to the national waiting list but he had little hope – until an acquaintance who heard of Jack’s plight through the network of friends at Sonoma Sky Park offered to be tested. Against tremendous odds, his tissue turned out to be compatible, but Jack’s deteriorating health and compromised immunity made him a high-risk recipient.
With IVIG therapy improving the odds, a successful transplant operation was performed at the end of January 2003.
“You talk about somebody who really benefited from transplantation, he was near death,” recalls Dr. Jordan. “At first, I wasn’t sure we were going to be doing him any favors. But without the transplant and without IVIG, he would have died. He was very close. Now he has just really pulled out of it and he’s getting back to his full activities.”
In fact, after all he has been through in the past seven years, he likes to let it be known that “Jack is back.” And while he probably will not race cars or planes any more, he is getting back behind the controls of his Bonanza and his restored Vietnam-era Navy fighter and planning future adventures.
“I figure this isn’t any rehearsal,” Jack says of life. “This is the real thing.”
Marathon runner in Hawaii slowed by genetic kidney disorder
Kathleen Hashimoto, 38, Kailua, Hawaii, also enjoys speed and covering great distances. She has been running marathons since she was 11. At 15, she learned she had polycystic kidney disease (PKD), a genetic disorder characterized by fluid-filled cysts that slowly replace much of the mass of the kidneys and gradually reduce their function. Her father, a 30-year Army surgeon who now works on a contract basis for the military, had PKD and received a kidney transplant about 10 years ago. His mother had PKD and died at an early age when neither dialysis nor transplantation was available.
“My mother and father had 10 children and out of the 10 children, eight of us now have PKD,” Kathleen says.
One of her brothers, a kidney specialist in Virginia, has been able to provide information and advice.
“Other than the usual blood pressure problems, people don’t usually go into (kidney) failure until late 20s or 30s. And it’s exacerbated by pregnancies. We were always told that if we were going to have children, have them early and don’t have that many because pregnancy is hard already on the kidneys,” says Kathleen.
Kathleen and her husband, Mark, had their first daughter five years ago and their second daughter two years later. After the first pregnancy, Kathleen’s kidney function stabilized at about 25 to 30 percent. After the second, it leveled off at 18 percent for three years.
Pregnancies increase sensitization and rejection risk
With her kidneys functioning at less than 20 percent of normal, Kathleen’s name was added to the national list for a donor organ. But because she had been exposed to antigens from her husband, expressed in the developing fetuses, her risk of rejection was significantly increased. Even if a donor’s tissue was an ideal match for Kathleen, if she was sensitized to the donor’s antigens, her immune system would reject the organ.
“I’d been on two kidney transplant lists for three years and because I had a lot of antibodies from my pregnancies, almost all the people who would come up – even the people that I knew who were getting tested for me – they might be a match, but I would reject their kidney because of the antibodies. Almost 80 percent of the population couldn’t give me a kidney,” says Kathleen.
Mark, a former Marine reservist who is now a war planner at Camp Smith in Hawaii, was called to serve in Iraq in early 2003. When he left, Kathleen’s kidney function was estimated to be 18 percent. When he returned after seven and a half months, that measure had fallen to 15 percent.
“They said that if it’s dropping, it’s going to continue to drop,” Kathleen remembers. “We decided that dialysis was not an option. I knew from my dad being a surgeon for years saying it’s a miserable existence and you’re never going to improve from it. People were very supportive about doing a public plea, so we went through the Marine network and through people that we knew through the running community and we got about 40 people to come forward and get tested for me. People I knew and didn’t know got tested here locally in Hawaii, and halfway through the testing, somebody popped up as a match for me. It was a friend of a college friend of mine. I didn’t even know her. She lives in San Diego.”
IVIG modulates immune system to make a good match even better
Still, although the tissue types were a relatively good match, Kathleen’s high antigen sensitization was a problem. A surgeon who had performed a transplant operation for one of her brothers told her about the IVIG procedure, which she also discussed with her brother the nephrologist. Based on their recommendations, she contacted Cedars-Sinai and shortly thereafter bought a plane ticket. “I went for four hours and I met about eight doctors. They all knew my history and they were extremely professional,” she says. “I called my husband and said, ‘No matter what, we’re coming here. No matter who gives me the kidney, we’re going to make it work here.’”
Kathleen, once a third-grade teacher who is now preparing to home-school her daughters, had consistently tested high for antibody sensitivity, never below 70 and usually 80 to 90 out of 100. These numbers tend to fluctuate to some degree, but Kathleen’s dropped significantly and unexpectedly before her transplant surgery. With her history, however, Dr. Jordan and his colleagues decided that IVIG therapy would improve Kathleen’s chances of success. And although she experienced a short-term rejection episode three or four days after the April 16, 2004 transplant, it was, as the doctors said, “just a bump in the road.”
Kathleen has run the Honolulu Marathon almost every year since she was 11. She has run Boston, Vancouver, and Los Angeles marathons. She has run the Maui Marathon and the Haleakala Run to the Sun ultramarathon that covers 36 miles and a jaunt from sea level to 10,023 feet. Even when she was at her lowest physical point, she remained active and says she didn’t feel as sick as many others with failing kidneys.
“The fact that she was in great shape carried her a long way,” says Dr. Jordan. “I think it helped her recover from the surgery faster and gave her the strength to survive without dialysis.”
For the last three years before the transplant, she did take a large number of pills each day as well as injections of the synthetic hormone epoetin to ward off anemia. But she continued to work in the yard and she pushed the girls’ double stroller on her daily five-mile runs until she had to start scaling back.
“I got to the point where instead of doing it five days a week, I’d just take Monday, Wednesday and Friday, and I’d have a day of rest. I’d need a nap or I’d have to pace myself: ‘OK, I can do this one thing in the yard and that’s it,’ because I was just less able to do everything,” she remembers, adding that the loss of stamina was gradual and almost imperceptible. But the improvement after the transplant was immediate and significant.
“I never have a feeling of tiredness now. I wake up and I feel normal, not like, ‘Oh, gosh, I can’t believe I have to wake up.’ Even after 10 hours of sleep I was feeling that way before. Now my skin is better and overall I guess I’m just getting cleaned out,” she says.
Kathleen got up and walked shortly after surgery, knowing the activity would speed her recovery. And on December 12 of this year? She ran the Honolulu Marathon again – powered by her new kidney. As for the 36- mile trek up Haleakala?
“I won’t do that for a little while, but I may do it again,” Kathleen says.
Cedars-Sinai is one of the largest nonprofit academic medical centers in the Western United States. For the fifth straight two-year period, it has been named Southern California's gold standard in health care in an independent survey. Cedars-Sinai is internationally renowned for its diagnostic and treatment capabilities and its broad spectrum of programs and services, as well as breakthroughs in biomedical research and superlative medical education. It ranks among the top 10 non-university hospitals in the nation for its research activities.
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