Carissa Haston is dying to eat a solid meal. But it's possible she might die waiting for it.

	Lake Fong, Post-Gazette Carissa Haston, 27, with her mother, Sharon, is staying at Family House in Oakland while awaiting an intestinal transplant. Click photo for larger image.

It's already been more than 10 years since she had a normal meal, a consequence of a trio of conditions that prevent her from moving food through her digestive tract. To survive, she relies on liquid nutrition infused into the veins in her neck.

An intestinal transplant, a procedure pioneered more than 15 years ago at the University of Pittsburgh Medical Center, could restore her ability to eat normal food. But Haston, who lives in Lewisberry, south of Harrisburg, said that when she found out about the procedure more than a year ago, some of her doctors discouraged her from considering it. In the meantime, she has been in and out of hospitals, suffering from infections related to the IV feedings and other complications of her condition.

Out of other options, a weakened Haston now desperately needs an intestinal transplant and has been waiting in Pittsburgh since March for a suitable donor organ to become available.

Needless to say, she wishes she had sought a transplant earlier. "I would have been healthier and more capable of having the surgery," she said late last month from her hospital bed at UPMC Montefiore, where she was recovering from yet another infection.

Too little known

Unfortunately, this lack of awareness of intestinal transplants, even among specialists in gastrointestinal disorders, remains a barrier to treatment for many patients, said Dr. Kareem Abu-Elmagd, director of UPMC's intestinal rehabilitation and transplantation center.

Patients tend to be extremely ill when they seek the transplants, a fact reflected in the high mortality rates of people waiting for the surgery, said Dr. George Mazariegos, director of pediatric transplantation at Children's Hospital.

Though more people die waiting for other transplantable organs because those waiting lists are greater, a third of all intestinal transplant candidates die before surgery -- a death rate far higher than for other organs, according to the United Network for Organ Sharing.

Both children and adults may need the transplants if they have intestinal failure and are not well maintained on IV feedings, known as total parental nutrition. TPN can result in infection, liver failure, clots in the veins or other complications.

A leading cause of intestinal failure is short gut syndrome, in which much of the bowel is unavailable to absorb nutrients because of improper development, injury or disease. Some patients who need intestinal transplants have disorders that inhibit the movement of the intestine and subsequent passage of food through the digestive system.

Bariatric surgery, the increasingly popular procedure to reduce the size of the stomach to aid weight loss in the morbidly obese, can result in complications that necessitate intestinal transplants, though surgeons said these cases are still uncommon.

Dr. Douglas Farmer, director of the intestinal transplant program at the Dumont-UCLA Transplant Center, explained that some patients develop adhesions after bariatric surgery that can lead to twisting of the intestine or clots that can interrupt blood flow, resulting in the death of a portion of the intestine.

Those complications also can occur in patients after other types of abdominal surgery, said Dr. Alan Langnas, chief of the transplant program at the University of Nebraska Medical Center.

Intestinal transplants developed later than transplants of other major organs. While successful kidney transplants date to the 1950s and liver transplants to the 1960s, intestinal transplants were not successful until the 1980s.

Early attempts at intestinal transplantation yielded discouraging results, in part because the intestine is especially prone to rejection, Farmer said.

But in November 1987, a child lived six months after receiving a transplant of the intestine and other organs from a team at UPMC led by Dr. Thomas Starzl.

Another key development occurred at UPMC in 1990 with the introduction of the powerful anti-rejection drug tacrolimus, then known as FK506. The drug boosted survival rates, Farmer said, and they have continued to improve as major centers have gained experience with the surgery.

One-year patient survival rates now approach those of other organ transplants. Nationally, one-year survival for intestinal transplants is 82 percent, compared to around 83 percent for lung transplants, around 87 percent for liver and heart transplants and more than 90 percent for kidney and pancreas transplants, according to UNOS.

UPMC and Children's Hospital, which continue to have the nation's busiest intestinal transplant programs, report recent one-year survival rates of 90 percent or more for intestinal transplants, up from about 70 percent five years ago.

Farmer said it is too early to know whether the improved one-year outcomes will result in better long-term survival. In the past, fewer than half of intestinal transplant patients have survived long term. But he said the results should encourage patients suffering complications from TPN with intestinal failure to come forward earlier.

Donor shortages, too

Still, many doctors and patients are unaware of the surgery or its increasing success.

"I've had otherwise very good doctors look me straight in the eye and say, 'You do intestinal transplants? I didn't know anyone did them,'" Farmer said.

Cindy Miracle of Owensboro, Ky., said that after her newborn son, Tyler, lost the use of much of his small intestine because of a blood supply problem, one surgeon suggested that she and her husband give up trying to save him. But another doctor mentioned the possibility of a transplant, and their son had the operation at Children's Hospital in December.

Miracle said her son, now 17 months old, drinks normally from a bottle, has gained weight and is off TPN.

Lack of awareness also contributes to a shortage of donor intestines, said Dr. Andreas Tzakis, a former UPMC surgeon who is transplant co-director at the University of Miami's Jackson Memorial Hospital. Many times, organ recovery groups do not seek permission for the intestines when they obtain other organs, he said.

One reason is that the surgery remains uncommon. Last year, UNOS recorded 152 transplants of the small intestine alone, 46 of the liver and intestine, and 48 of the liver, intestine and pancreas. The same year, there were 16,000 kidney transplants and more than 6,100 liver transplants.

Worldwide, just 989 intestinal transplants were performed between April 1985 and May 2003, according to the Intestine Transplant Registry. Three out of four cases were performed in the U.S.

UPMC and Children's Hospital have performed about 30 percent of the world's intestinal transplants.

The surgery is complex, Abu-Elmagd acknowledged, and care of patients can be difficult. The procedure also is not a moneymaker, he said, though the federal government's decision five years ago to provide Medicare coverage for the transplants at large centers with high success rates has helped to make more surgeries possible. An increasing number of private insurance plans also cover the operation.

The surgery not only can save lives, but offers a return to a normal lifestyle.

Haston, the patient from Lewisberry, said being unable to eat has affected her social interactions since they often revolve around food. She longs for simple pleasures, such as having a hamburger with friends.

Haston said her digestive problems began when she was 16. She developed persistent nausea, had trouble eating and quickly lost weight. She eventually was diagnosed with gastroparesis, a nerve disorder that slows or stops the movement of food in the digestive tract, along with intestinal dysmotility and pseudo-obstruction. Before long, she needed TPN or supplements fed through a tube in her intestine.

Though she graduated in 2000 from Messiah College in Grantham, Cumberland County, and later won an alumni award for founding a support group and nonprofit organization for people with gastroparesis, her health problems have prevented her from working or attending graduate school.

"It rips my heart out when I am sleeping and have dreams that I am healthy, only to wake up and face reality," Haston wrote in an autobiographical account she called "The Fight for My Life."

But the prospect of a transplant -- she will need not only a small intestine, but a stomach, duodenum and pancreas -- has given her a different outlook. She hopes the surgery will allow her to return to school, obtain a master's degree in art therapy and work with terminally ill children.

Hearing about the operation at UPMC, she said, "was the first time in years that I had any hope that I would get even a little bit better."

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Waiting for transplants While many more people die waiting for other types of organ transplants because wait lists are greater, the mortality rate is highest among patients awaiting intestinal transplants. Here is a 2004 breakdown of organ transplant waiting lists, patients and deaths.
Organ	Patients waiting	Deaths	Percent deaths
Heart	6,054	447	7.4
Intestine	155	55	35.5
Kidney	78,768	3,662	4.6
Liver	25,955	1,772	6.8
Lung	5,597	474	8.5
Pancreas	1,779	54	3.0
Source: United Network for Organ Sharing