A Deep Breath and a Smile Help Her Cope : Medicine: UC San Diego Medical Center’s first heart-lung transplant recipient doesn’t let the little--or the big--things get her down.
Renee Williams is breathing easy these days.
So what if she’s virtually penniless. So what if her face is a little puffy and her stomach isn’t as flat as it used to be. So what if her biggest physical challenge is to walk more than 35 minutes on a treadmill. So what if she has to take $700 worth of medicine each month.
“I’m not really that concerned about it, because the alternative is death,” said Williams, a 34-year-old Laguna Hills nurse.
On March 13, doctors at UC San Diego Medical Center peeled back Williams’ ribs, took out her badly damaged heart and lungs, and replaced them with those of a fatally injured Oceanside skateboarder.
As UCSD’s first heart-lung recipient, Williams has been an ideal patient. She was well enough to leave the hospital a month after surgery, two weeks earlier than might have been the case. In physical therapy, she has also progressed quickly to regain lost muscle strength and endurance.
“It’s similar to what it would be for any of us if we went out to start running, and we had been a couch potato,” said Dr. Cecilia Smith, a pulmonary specialist and medical director of the lung transplant program at UCSD. “But she’s a fighter, so she has been not giving in to the sense that it’s an uphill battle.”
Indeed, Williams’ natural good humor and optimism were much in evidence this week as she gave her first interview since the transplant.
“I can’t believe how nice people have been,” she said, opening a card from the 6-inch stack she has received from concerned San Diegans. She read the handwritten message on one small card: “The lung fairy says you have run out of bad luck.”
“I felt bad that I couldn’t write all of them back,” she said. “But it was wonderful to get all these get-well cards and good wishes from people I didn’t even know. I kept them all.”
Her words tinged with the accent of Memphis, her native city, Williams spoke in a Hillcrest apartment down the street from UCSD Medical Center. She lives there with her parents, Shirley and Roy King of Memphis, who moved out last February to be with their daughter as her condition worsened.
Williams apologized for occasionally stumbling on high heels she hadn’t worn in months, but she had anticipated one inevitable question by wearing a V-neck dress, above which several inches of scar was visible.
“It’s a good one, isn’t it?” she said, touching the slender line.
Williams is animated, gregarious, funny--the person she was before an undiagnosed birth defect called Eisenmenger’s syndrome turned her into an invalid who had trouble getting enough breath even to talk.
The syndrome was diagnosed in September, after she suffered a puzzling fainting spell and also noticed that her fingers were turning blue, for lack of oxygen. A cardiologist found she had a hole in her heart, which causes the heart to pump harder.
The resulting high blood pressure eventually destroys the lungs’ ability to oxygenate blood. In Williams’ case, the condition had been silent her whole life, but progressed quickly after her first symptoms. She spent six weeks in the hospital, breathing nearly pure oxygen, before the transplant.
Williams recalls lying in the intensive-care unit after the surgery, second-guessing the nurses on almost every procedure.
“She tried to keep up with everything that was going on with her, the whole time,” her mother said. “Even when she was so sick, she was monitoring everything they were doing to her.”
“I was a pain,” Williams confirmed with a laugh.
Today, she’s just 6 pounds below her previously normal weight of 104--after dropping to 84--and spends three days a week lifting light weights and walking on a treadmill while her blood oxygenation is monitored through a probe inserted in her earlobe. She also has weekly blood tests and X-rays to check for transplant rejection.
The major visible side effect of the medication has been slight puffiness of her face and trunk from the steroids she must take--a fact she sheepishly confesses surprised her.
“I knew that from nursing school, but I had forgotten it,” Williams said. “Every time something came up, I’d say, ‘Well, I should have known that. I’ve been to nursing school.’ ”
By the measure of her former life as a busy nurse, scuba diver and mountain climber, Williams’ recovery has been slow: a month in the hospital; another month at home, weak and unable to eat, and finally, after a blood transfusion, a quick increase in stamina this past month.
Just a little more than a week ago, she could drive a car for the first time in months.
And, on Thursday, she returned to Orange County, to visit former co-workers at Saddleback Memorial Medical Center and to help her brother, a teacher in El Monte, celebrate his birthday.
Still, she faces several more months of close supervision by her San Diego doctors before she’ll have the endurance to seek work.
“It’s a small price to pay,” Williams said. “It’ll come. In a year, things will be very different.”
Even when the physical recuperation is over, Williams knows she faces serious financial and career problems as she tries to build a post-transplant life.
Among the uncertainties are how to pay the $700-a-month cost for the drugs necessary to keep her alive. Some of the drugs suppress her immune system, to keep her body from rejecting the new organs, and the others are antibiotics to guard against infections.
For now, the hospital is helping her apply for Medi-Cal. Her state disability benefits have run out, so she is also applying for Social Security benefits.
Later, when she is strong enough to take a job, Williams says, she expects to have trouble getting her medication or continued monitoring covered by health insurance. In addition to the drugs, she must have blood tests and chest X-rays weekly.
Such issues are doubly important to Williams because she already knows how hard it is when an insurance company won’t cover one’s medical bills.
The plan under which she was covered as an obstetrical nurse declined to cover her Eisenmenger’s syndrome treatment because her illness was a “pre-existing condition.”
“I’ve always made such a point to always have insurance coverage, because I’ve worked at teaching hospitals and county hospitals where I’d see people who don’t have any insurance and don’t have jobs. I’ve always been real responsible,” she said.
Her fellow employees contributed about $60,000 to a fund to pay for Williams’ transplant, and Saddleback matched that amount. UCSD has written off $45,000 beyond that for the transplant. Drugs and follow-up care have cost $6,500 so far, spokeswoman Nancy Stringer said.
Williams also wonders how she’ll stay in nursing.
“The only thing I know how to do is nursing,” she said. “And a hospital is the worst place in the world for me to be because of all the infections I could catch.”
If there is uncertainty in her life, though, Williams copes with it through humor and a positive attitude. She shakes her head ruefully at how her life concerns have changed from the grandiose to the mundane.
“I had planned to be living in Australia by the time of my 20th high school reunion (in 1993), so I could be the one who came the farthest to the reunion,” she said. Her smile remained as she added: “But now it looks like--now I’m bankrupt. What can you say?”
