Newswise — Jessica Terrazas is hangin' at the mall with friends, eating meals with her dad and planning her college major.
Those simple pleasures, taken for granted by most, were off limits until recently to the 24-year-old. At 17, Jessica was diagnosed with Hirschsprung's disease, a rare, life-threatening congenital disease in which dying nerves in the intestine prevent food from moving through the digestive system. The nerve problem also causes the intestinal tissue to die.
Years' worth of surgeries that resectioned Jessica's intestine failed to help her in the long-run, leaving her with a dangerously short small intestine and the inability to absorb nutrients or digest solid food. At 22, Jessica had to be fed intravenously, 12 hours a day. Her condition forced her to live a life few can imagine.
Every day brought the fear of dehydration, no matter how much water she drank. All but the smallest efforts exhausted Jessica; even brief walks drained her energy. Eventually she had to drop her college classes.
Eating was the worst part for Jessica. Not only was she unable to eat what she wanted, sometimes she could not keep her food down. Even if she did, Jessica was constantly facing the threat of malnourishment because of her body's inability to absorb most nutrients.
"The worst was that I couldn't go out with friends to the movies or the mall," Jessica recalled. "I had to get home by 8 p.m. each night and hook myself up to an IV," Jessica recalled.
The special food and intravenous nutrients she had to take were so hard on Jessica's body that, at just 22, she developed cirrhosis of the liver. Her skin and even her eyes turned yellow from jaundice.
"It was scary to look at myself " my eyes were bright yellow," she said.
In August 2004, Jessica's name was put on the organ recipient list. It was clearer than ever how much she needed both a new liver and a new intestine. She had one year to be on the list.
Four months later, in December, Baylor officials contacted Jessica and her family with what appeared to be an organ match. Unfortunately final testing on the organ revealed that it was not a match. Jessica and her family were back to the waiting game.
Their waiting was even more difficult because of a series of painful events: Jessica's mother died in a car accident, throwing the family in a deep state of grief. Jessica also was growing weaker by the month. She had to be hospitalized multiple times in 2005 with severe cases of pneumonia and sepsis.
Each hospitalization reminded Jessica, her sister and her father of how desperately she needed the transplant. Her father ended up quitting his job temporarily to be at Jessica's bedside in the hospital and at home.
"I was afraid I would not make it until there was a donor," Jessica recalled. "It was very scary for my family, too."
In August 2005 " one year from the date Jessica's name was placed on the organ recipient list "Jessica received a call. It was Dr. Srinath Chinnakotla, a transplant surgeon on the medical staff at Baylor University Medical Center at Dallas. A perfect match had been found.
"I cried and cried and I called friends and family that I was going to have it," Jessica said. "But I was also very scared."
On Aug. 18, Jessica underwent a 10-hour surgical procedure during which Dr. Chinnakotla transplanted a liver and a small intestine.
Small intestine transplants are very complex and risky for several reasons. The bacterial climate in the intestine makes infection more likely, doctors say. Because of this, anti-rejection medications have historically not been as successful in intestinal transplant patients as in other organ transplant recipients. In addition, very few U.S. surgeons have the expertise to perform intestinal surgeries, said Dr. Goran Klintmalm, chairman and chief of Baylor Regional Transplant Institute. The Institute has been working three years to perfect its intestinal transplant procedure.Seven months after her surgery, Jessica is very healthy and has no serious complications. Generally, serious complications such as rejection of organs occurs within the first few months of a transplant.
"I am just thankful to the donor and to my family " my dad and sister have been there every step of the way," Jessica said. "And to Dr. Chinnakotla " he made the biggest difference in my life."
By performing Texas's first successful small intestine transplant, Baylor has established itself as a key site for this life-saving procedure. There are only five other sites in the U.S. " the very sites Baylor physicians once relied on for patients such as Jessica.
"Now patients in Texas do not have to travel across the country to find an intestinal transplant program. We have the solid expertise here to treat them," Dr. Klintmalm said.
Baylor has been a leader in organ transplantation for several decades. Dr. Klintmalm performed the first successful liver transplant in the state in 1985 and his staff has continued to make transplant-related breakthroughs.
An estimated 20,000 people suffer from some form of intestinal failure. Only a very small number of people " one in a million " become eligible for intestinal transplants.
"That we've been able to successfully do this complex procedure completely opens up a new arena for us," Dr. Chinnakotla said.
Jessica makes regular visits to Dallas for organ biopsies with Dr. Daniel DeMarco, a gastroenterologist and medical director for endoscopy who is on the staff at Baylor Dallas. Dr. DeMarco, who specializes in digestive diseases, was the first physician to treat Jessica when she came to Baylor Dallas for her condition. (See gastroenterologist sidebar)
But Jessica's once weekly trips are now just monthly. When at home in Midland, she is doing all that she loves " and making up for some lost time, too: eating burgers and other meals with Dad Oscar, planning for college and shopping. Jessica says she regularly visits the Ridgemar Mall " including after 8 p.m., her former IV-imposed "curfew time." Just recently she bought a pair of stylish heels " sparkly ones with black crystals.
"I am very happy," Jessica said, "to be able to do the things now that many people take for granted."
SIDE BAR:
Digestive Diseases Affect Millions -- Rarely Require Transplant
Baylor helps those who suffer from a wide range of digestive diseases
Although tens of millions of people suffer from digestive diseases in the U.S., very few have the problems that Jessica experienced, said Daniel DeMarco, M.D., a physician on the staff at Baylor Medical Center at Dallas who treated Jessica before and after her transplant.
Only one in a million people qualifies for an intestinal transplant because of a congenital or other illness such as Hirschsprung's disease. Typically the eligibility comes because such patients require long-term intravenous nutrition, which results in toxicity to the liver and other life-threatening complications.
"The fact that Baylor was able to do this procedure for Jessica once again emphasizes Baylor's commitment to being on the leading edge and doing the best that is humanly possible for its patients," Dr. DeMarco said.
That commitment carries over to Baylor Dallas' treatment of all digestive diseases. More than 10 million Americans are hospitalized each year for digestive diseases, with at least 60 million suffering from less severe stomach- and intestine-related problems.
As a gastroenterologist and medical director for endoscopy on the medical staff at Baylor Dallas, Dr. DeMarco handles digestive diseases ranging from the common conditions of acid indigestion, constipation and irritable bowel syndrome (IBS) to more serious illnesses such as stomach and colon cancer or, in Jessica's case, Hirschsprung's disease.
Regular screenings of various kinds can ensure that a person's digestive system is working properly. These tests, which become important as a person ages, also detect problems that sometimes have no symptoms.
Patients with the problems that Jessica experienced are, fortunately, rare. Still, it is important for Baylor Dallas to be able to respond to such patients, Dr. DeMarco said " especially in a day and age of increasing industry competition, rising costs and decreasing health insurance reimbursements.
"Baylor made a tremendous commitment in devoting the resources to help this subset of patients with intestinal problems," he said. "That's not something every hospital would do."
Dr. DeMarco said the comprehensive and quality care that Jessica received was imperative, in the most life-saving way.
"If we had not done this, I am sure she would be dead by now," Dr. DeMarco said.
He continues monitoring Jessica's progress, taking regular biopsies of her intestine and watching for any side effects, which have not occurred.
The successful intestinal transplant " Texas' first " makes Baylor Dallas one of a select few sites in the U.S. for such procedures.
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