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the gift

The odds against them were 10,000 to 1. How could she hope to give her husband one of her kidneys, and a new life?
By Harriet Gross |

OF COURSE, HE SHOULD HAVE KNOWN. THE DISEASE HAD ALREADY KILLED THREE MEMBERS OF HIS FAMILY. BUT A a trim former athlete of 41, a happily married father of two, cant be faulted for not wanting to think about his own death. It wasn’t until the day late in 1989 when he began urinating blood that Ken Geiser had to admit the problem was his, too.

“Strictly denial on his part,” says Teresa Geiser. And maybe on her part as well. She had chosen to marry Ken and bear his children, even though she knew that a highly inheritable form of kidney disease was a legacy he brought to the marriage. While love can shut out unpleasant realities, it also can overcome them.

Seven years after the Geisers’ wedding, one year after the onset of symptoms that couldn’t be waved aside, Teresa and Ken entered Methodist Medical Center in Oak Cliff. There, in simultaneous surgeries on November 6,1990, she gave him the kidney that saved his life. KEN WAS BORN IN CINCINNATI IN 1948. THAT SAME YEAR, HIS MATERNAL GRANDMOTHER DIED OF KIDNEY FAILURE.

Ten years later, his mother became ill and was diagnosed as having polycystic kidney disease (PKD).

Organ transplants were experimental then, but after months of dialysis at the Cleveland Clinic, it became obvious that the new surgery was Mrs. Geiser’s only hope. She was one of the first people in the United States to receive a cadaver kidney, and it extended her life until she died of pneumonia in 1963, at age 43.

Ken has an aunt who also died of PKD, in 1988. An uncle was 55 when, after a year of dialysis, he underwent a kidney transplant. The donor was his 31-year-old daughter, who seems free of the disease- although her brother has it.

The “family curse” is merciless. Ken’s sister, 47, was scheduled to start dialysis around Christmas. Her daughter, Ken’s 25-year-old niece, is having PKD-related problems, and Ken’s brother, 44, shows no signs yet, but has been diagnosed with PKD.

“Both my brother and sister have had annual physicals for 20 years,” Ken says, “but they seemed OK until fairly recently.”

Ken played college football at the University of Wisconsin and had been on a regular exercise program since his 1972 graduation. “Over the years I had uncontrollable blood pressure,” he admits now. “I know it goes with the disease.” But he never related the disease to himself. When he finally acknowledged his need for a donated kidney, he also had to recognize that there was no one in his family healthy enough to give him one. “I SAW TERESA AS A POTENTIAL organ donor,” Ken jokes in an unusual display of humor. He’s the serious, deliberate one, careful in choosing his words. Teresa is quick to laugh, quick to act.

A career move had brought him to her home town of Jackson, Miss. He was a college graduate, a professional working in retail merchandise distribution. She had gone to work right out of high school.

When a new opportunity with Wilson’s Catalog Showroom brought Ken to Dallas, Teresa followed. The couple married here in December 1983, and Teresa look a job at Electronic Data Systems. In 1985, Ken started a job with Suzanne Shops. Their daughters were born in 1985 and 1988.

Today, the Geisers live in a bright, first-floor apartment in farthest North Piano. They seem a healthy, happy family, rather than one stalked by a killer. Dark, bearded Ken is 10 years older than his blond wife; at 6’1″, he is also 10 inches taller. But Teresa is deceptively powerful. Every day she walks a minimum of five miles, clocking in at 11 minutes per-all the while moving the girls before her in a two-wheeled kiddie jogger.

“We’ve alt been through so much,” Teresa says, “especially the kids.” Young as they are, the Geiser girls-Haleigh and Jessalyn-understand a lot about illness. But they don’t yet realize they are another generation that probably will have to deal with life-threatening kidney disease.

THE KIDNEYS’ JOB IS TO FILTER WASTE products and carry them out of the body via the bladder. In kidneys like Ken’s, huge cysts block the process. Sometimes the cysts burst, flooding the urine with blood. This is what brought Ken to nephrologist Dr. Bruce Wall, in November 1989.

The first step was severe diet restrictions to lessen his kidneys’ work load: low protein, low sodium, low potassium. No orange juice, bananas or milk. Ken was 230 pounds, looking healthy and not ready to accept how seriously ill he was. Wall talked to him about dialysis-the process of mechanically removing poisons from the blood-and about getting a donated kidney as quickly as possible. In January 1990 Ken made application through the Dallas Transplant Institute, which coordinates transplants. He then selected Methodist Medical Center for treatment. But he was not yet a believer.

Through February, March and April, things got worse. By mid-May, limited food intake and the nausea and vomiting that accompany kidney failure had dropped his weight to 178. Medical test results were equally alarming. The level of his creati-nine-the compound that indicates toxic buildup in the body-was 12 times greater than normal, making Ken a good candidate for a stroke. His potassium level had risen to the point at which it would not be a surprise if his heart stopped beating.

“I knew I was in the death zone,” Ken admits. Still, he continued to report to work every day.

Finally, Teresa took the action that her husband couldn’t. “I was looking at him dying,” she says. “So I ’kidnapped’ him.” On May 17, she drove to a pay phone near his Carrollton office and called him on his work number. “I’m at the corner,” she announced, “and I’m coming in to pick you up.”

Teresa drove him to Garland Memorial Hospital, where his admission had already been arranged. There, a bovine shunt (a catheter made from the neck tissue of a cow) was implanted in Ken’s left arm to facilitate dialysis. Every Tuesday, Thursday and Saturday for months thereafter, the machine cleaned his blood. Finally, Ken admitted he needed someone else’s kidney to live.

The best thing about his June transplant workup was that the many medical procedures could be done near home, at Piano Dialysis Center and HCA Piano Hospital. “The bladder testing was terrible,” Ken says. There were also gall bladder tests, chest X-rays, an AIDS check (now a federal requirement in all transplant cases) and a psychological evaluation. Then Methodist did the tissue typing for an organ cross-match, and Ken was placed on the waiting list for a cadaver kidney.

METHODIST OPENED ITS DIALYSIS UNIT in 1974 and did its first transplant in 1981. One of three Dallas hospitals that do kidney transplants, it is approved by the United Network of Organ Sharing, the agency that regulates organ procurement and supervises transplants nationwide through its matchmaking computer in Alexandria, Va.

On the tissue-typing scale for organ donors and recipients, 6 is the highest number; when the UNOS computer finds a 6 match, that organ goes immediately to wherever in the country that donor is waiting. But improvements in rejection-suppressing drugs are now making lower-numbered matches successful as well. When no 6 match is found, available organs are assigned by geographical region; length of time on the waiting list is a determining factor. Methodist currrently has about 140 individuals on its kidney list. Nationwide, over 19,000 people are waiting for kidneys.

The impossibly long wait for an organ is a prime concern of Dr. Richard Dickerman, surgical director of the transplant program at Methodist. “The number of donors has been stable for the last three years, while the number of people on the list has tripled. Ken Geiser would have had to wait two years on our list.”

According to Dickerman, Ken had already lost 90 percent of his kidney function by June, when his name was first listed, His own organs were not going to last long enough for him to get a cadaver kidney.

“KEN WAS NOTHING BUT A BAG of bones by the end of July,” Teresa recalls. That’s when she decided to have herself tested as a possible donor, The doctors tried to talk her out of it: If she ever had a severe illness or injury, she might wind up like Ken.

Despite Teresa’s willingness, there was an obstacle. Since she had no blood relationship to her husband, the chances of compatible tissue typing were 10,000 to 1 against her.

In the testing process, six antigens-the substances to which the body reacts by producing antibodies that will attempt to reject the transplant-are studied in both potential donor and potential recipient. When the computer coughs up that elusive 6, the best match, there is cause for rejoicing. There is optimism when the number is 3, the usual match for people sharing the same genetic background. Teresa’s match number came up 4.

“I was at work when the call came through,” Teresa remembers. “Somebody was talking to me, going on and on about how incredible the match was. I started to sweat. The people near me said I lost all my color.”

That was August. A second match was run. just to be sure, and its results confirmed the first. Surgery was scheduled for early November. The Geisers had two months to prepare for a shared experience of stunning rarity: According to Dickerman, only a dozen hospitals across the country will perform transplants of organs from living donors who are not blood relatives of the recipients. Methodist is one of them. Ken was Methodist’s 1,011th kidney recipient. In only 15 of the previous operations was the organ taken from a live, unrelated donor.

“Most people I talked to thought I was crazy,” says Teresa. “They’d never do this.” Support came from her family in Mississippi. “This is your decision. Whatever you do, we’ll back you.” And her EDS co-workers recognized Teresa’s sense of humor as well as her strength with an unusual theme party: “Kiss Your Kidney Goodbye!”

During the weeks before surgery, doctors regularly transfused small amounts of Teresa’s blood into Ken, building up an internal familiarity. On November 1. Teresa underwent the final test. “The doctors go through an artery in the groin to examine both kidneys and see which one they will take,” she explains. “If they find something wrong, it’s all off.” There was nothing wrong. On November 5, Ken and Teresa entered Methodist.

THE DATE IS NOVEMBER 6, 1990. THE setting: two adjoining operating rooms. In the first, Teresa Geiser, who has just passed her 32nd birthday, lies on her right side while a surgeon makes the curving, 20-inch cut that provides access to her left kidney. Then he steps back as a urologist comes forward and reaches inside to remove the purplish-brown organ, about as big as a tightly closed fist. A kidney just severed from its moorings will function at least 10 percent better in the recipient than an organ that has been waiting in a pail of icy water for up to 36 hours.

In the second room, lying flat on his back, is Ken Geiser, who will turn 42 in less than three weeks. Dr. Dickerman and Dr. Guil-lermo Trevino, the Methodist transplant team, move toward the operating table. They have worked together for so long, they are like a single surgeon with four hands. Later, neither will be able to remember who did exactly what.

An incision is made between Ken’s hipbone and navel, and into this small slit the donated organ is slipped, positioned, sutured into place. The old kidneys are not removed; they are left to atrophy. Some of the cysts blocking them are as big as the entire healthy organ that will soon be working inside Ken.

Ken is grateful to his wife. “She had very rough surgery,” he says. “The operation is really harder on the donor because of the way they cut.” On the day after, Teresa amazes everyone at Methodist by doing just what she always does: walking. She walks all the way across the hospital, from her bed in post-surgery to Ken’s in the transplant unit.

KIDNEY TRANSPLANTATION MAY BE almost routine for Dickerman and Trevino, but Ken’s surgery gave them problems. Teresa’s unusually thin kidney artery tore during the operation and had to be resewn. This deprived the organ of blood flow and sent it into a state of shock called “hibernation.” No one knew of the problem then, for the kidney seemed fine when Ken’s incision was closed, and it started to work soon afterward. But 12 hours later, his body began to reject it.

“That’s when the nightmare started,” says Ken. The previous hellish year seemed like a good dream by comparison.

First, Ken was given anti-lymphoctic globulin, a serum derived from the thymus glands of horses, to fight the cells that cause rejection. Ken reacted with vomiting, dizziness and diarrhea, but the kidney refused to get back to work. He had to return to the dialysis machine. Next he was started on OKT-3, a mouse serum derivative that has been in use for just five years and is considered a last-ditch effort in fighting rejection. OKT-3’s side effects are dismal punishment for the whole body; only people whose overall physical condition is as good as possible under such bad circumstances are given it.

“Ken had one of the worst reactions,” according to Dr. Dickerman. “It was the worst experience of my life,” Ken concurs. On Sunday, four days after surgery, he began the treatment, which attacked him with three hours of vomiting and six of diarrhea. On Monday, his fever rose so high that he had to be iced down with wet blankets. For the next 24 hours he was virtually paralyzed-his pain was so severe he could not move. But administration of OKT-3 continued for the course of treatment, 11 days. And so did the blood-cleaning dialysis mandated by a non-functioning kidney.

Then: “On Day Six, the kidney kicked in, in the middle of the night,” says Ken. “I got up with my bladder full. And I peed for hours!”

Teresa was in the hospital for six days after the surgery. The usual stay for a recipient is 16 days, but Ken’s problems kept him at Methodist for 28. After his mid-December release, he went back to work immediately, part time. “It was probably sooner than I should have,” he says, “but I was definitely rested. I had read as much as I wanted to read in my whole life, and I was going nuts!” For a time he returned to Methodist daily for his special rejection treatments. And then he settled down into his new lifetime routine.

REJECTION” IS THE MOST IMPORTANT word in the organ recipient’s vocabulary. Fear of rejection is always lurking. To fight the actuality-though there is no effective way to fight the fear-a trio of drugs will keep Ken company for as long as he lives. Every day he takes the steroid Pred-nisone, the immunosuppresant Imuran and Cycloporine, the newest weapon in the anti-rejection maintenance arsenal.

A prime side effect of Prednisone, which Ken takes every morning, is that it makes all his food taste terrible. It also made him nervous at the start, but he’s learned not to let anything shake him. lmmuran causes a fluctuating white blood count, which Ken lets the doctors worry about. But he must deal with the effects of Cyclosporin himself.

“I take it twice a day,” he says, “and it causes excessive hair growth. I was balding before, but that stopped completely. The amount of hair on my head more than dou-led in the first three months.” Ken now needs a special attachment for his electric razor to cope with his thick, gray-brown beard.

Some other things have also become routine since the surgery and the start of Ken’s triple therapy. The same drugs that suppress rejection may also suppress rejection’s warning signs. One of these is rising fever, so Ken must take his temperature twice a day, every day. Because a weight gain of two or three pounds in a single day may also signal rejection, Ken gets on a good scale once a day. And he must monitor his blood pressure twice a day.

For the first year, Ken had to measure his intake of fluids-and their outgo-daily, and visit his doctor weekly. That is no longer the case. In the last few months, he’s gained 15 pounds. Although he looks good, doctors are always concerned that a weight gain could be the result of steroid-induced diabetes. What will never diminish, says Ken, is the feeling of living on the edge.

“It’s amazing how one minute your life can be so normal and happy, and the next minute your feet are knocked out from under you, and you’re in a world you didn’t know anything about.”

One aspect of that strange new world is its high cost. The three drugs that help Ken’s system supress rejection run $1,500 per month, $1,200 of that for Cyclosporin alone. For the first year after surgery, Medicare paid for all medications related to the transplant. That ran out December 1, so now the Geisers must foot the bill themselves. Medicare provides extensive coverage for organ recipients beginning on the day of transplantation. Because Teresa’s operation was necessary for Ken’s health, Medicare paid most of her costs as well. The Geisers were lucky because insurance coverage through Teresa’s job paid for the bulk of the $75,000 cost of pre-surgical workups, hos-pitalizations and postoperative care not covered by Medicare. Their out-of-pocket expenses before December 1 totaled between $10,000 and $12,000. That still leaves the cost of medication. Ken, no longer covered by Teresa’s insurance, has been turned down by three other insurance companies. “You go through the operation, you have a successful transplant and they don’t want to touch you.” He has applied for the Texas Department of Health’s Kidney Health Program, which reimburses medication costs for those who can’t afford it. If that doesn’t come through, he will try to get help from the National Organization of Rare Diseases, a coalition including drug manufacturers who help pick up expenses for people using their products.

DURING THE FIRST FEW MONTHS after surgery. Ken and Teresa tried to get back to a normal life. As soon as they did, they made plans for community involvement. During Donor Awareness Week in April, Ken spoke to Suzanne Shops employees and distributed uniform donor cards. Both he and Teresa joined in the celebration when Methodist marked the 10th anniversary of its transplant program in mid-June.

“Hopefully, we’ll be counseling with patients awaiting transplants,” says Ken.

“And I’d like to go back to the Dialysis Center and say to everyone there, ’Look how well I’m doing!’ But you see the people who used to be in the chairs next to you, and there’s no hope for them. Not everyone on dialysis can go through a transplant physically, even if they can afford it. And a transplant isn’t a cure for renal failure, anyway. It’s just a different way of life. You face the loss of your kidney every day.”

The sun is shining through the glass patio doors into the Geiser living room. Teresa smiles down at her daughters.

“This disease is so hereditary,” Teresa says. ’Maybe I shouldn’t have donated to my husband. Maybe I should have waited to see if my children need my kidney.

“But Ken and I sat down together and looked at how far medicine has come since his mother died. There are such strides today in polycystic kidney disease, and not just to shrink the cysts and cure existing cases. Now the research work is geared to genetics. Maybe, in the future, they’ll be able to go into the wombs of pregnant women and change the chromosomes. . .”

She looks at the girls again. “Maybe only one of them will have PKD,” she whispers. “Maybe one of them could give a kidney to the other.”

“When Teresa and I got married,” Kensays, “everyone asked us, ’How can twoheadstrong, stubborn people like you livetogether?’ Well, she gave me a good, strong,stubborn kidney. It is going to last me alifetime!”

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