American Foundation for AIDS Research, June 2002
Jeff Getty

Part One

In the past three years persons with HIV have finally begun to receive liver and kidney transplants at various transplant centers in the U.S. and Europe. The results are not always successful: Boston AIDS and hepatitis activist Belynda Dunn’s liver transplant ended with her death on March 12. Her new liver did not function, and she expired due to a lung complication as doctors were trying to transplant a second organ.

Surgical complications, as occurred with Dunn, are to blame for most early deaths in persons with or without HIV. Overall, few liver transplant patients die soon after the procedure, and the five-year survival rate for HIV-negative patients has been about 80%.

A successful liver transplant was recently performed on HIV-positive playwright Larry Kramer of New York. It made national headlines. And Alan Hext, a pioneer of these transplants, received his new liver in December 1998. He remains alive and well in Southern California. Pittsburgh University Medical Center’s Dr. John Fung performed all three of these operations and believes that postoperative long-term survival looks promising for Hext, Kramer and others like them. While Kramer fights for independence and immediate recovery, Hext’s health has returned to what it was years ago – before hepatitis C destroyed his liver, and nearly his life.

Both Kramer and Hext received transplants for hepatitis- related liver failure. Kramer, with hepatitis B, underwent a very strenuous operation and spent some 15 hours on the operating table. Hext had relatively routine surgery but then suffered from several bacterial infections after leaving the hospital.

Dr. Fung believes both patients can expect full recovery and good quality of life. “The improvements in quality of life are always relative. Kramer had severe muscle wasting, whereas Hext did not. Hext was also very lucky to clear his Hep C [after the operation]. The sicker the patient, the better the gain in quality of life,” he said. Both patients remain on anti-HIV and anti-rejection drugs. They must do so for life.

“I’m feeling pretty good now, though I did not think I felt so bad before the operation, but I am dealing with constant diarrhea from the HIV meds,” said Kramer. In the aftermath of his transplant, Kramer is staying in an apartment near the Pittsburgh medical facility, working out at a local gym three times a week and taking in the sights and sounds of the city. His muscle tone has begun to improve and his previously catabolic (wasted) arms and legs are enlarging and gaining strength. “My arms and legs looked like pencils at the time of the surgery. Now my legs are back to their former beauty,” said a pleased Kramer. Now dealing with his first transplant-related complication, Kramer went back on the operating table for a minor hernia operation.

Kramer says that the hardest part of the whole ordeal was the first three post-surgery days in intensive care. Kramer’s caregiver, Rodger McFarlane, related that while Kramer was in the Intensive Care Unit, he was not in control at times and thrashed about, tearing out tubes and dressings. Kramer believes it was one of the pain medications that caused him to feel frightened and lose control. He was stable and on the mend after the first few days.

Dr. Fung’s experience is that such transient distress is fairly common immediately after surgery. Recovery from liver transplant is a long and arduous process. So far, persons with HIV tend to recover at about the same rate as those without HIV. Kramer is hopeful that he will be back to good health within a year. “I’ve seen and spoken to other patients who had the operation six months to a year ago, and they look great,” he said.

Before his own operation, Kramer spoke to Alan Hext by phone. Hext reassured him that while the surgery was no picnic, there could be a return to normal health. Hext, who since his transplant has fathered a child and now cares for a toddler and a 13-year-old stepdaughter, is robust and energetic. His improved mental outlook was the most dramatic effect of the surgery.

Part Two

Commenting on his recovery, Hext recalled, “For one thing, I had hope to live, my whole outlook on life changed, I felt good, I felt healthy. I felt well. Before, I was yellow. I looked awful. Looking back on it, I was a pretty sick guy. I had to make the most of each day and did not know if there would be a tomorrow.”

Hext had put his affairs in order before the transplant and had even purchased a mausoleum niche in his hometown cemetery. Now he has a new lease on life, but he kept his cemetery space. He recalled, “After the surgery, I went down to the cemetery and saw the niche and said, ‘Well, it looks like it’s going to be a while before you’ll get me.’”

The hardest part of the ordeal for Hext was seeing other patients suffering before and after surgery. He became overwhelmed in the hospital environment and fled back to California as soon as he was strong enough to take an airplane. Pittsburgh officials discouraged this hasty departure. They prefer that patients live in town for several months following surgery. Indeed, Hext’s care in California was problematic at times. Local physicians were unable to cope well with post-surgical complications. New infections sent him back to the hospital for three weeks. But now he is all but normal. His health is better than it has been since he first felt the effects of hepatitis C in 1997. Hext plans to buy a small tractor and replant his cactus collection at his Palm Springs home.

Over three years later, Hext’s continued survival and undetectable HIV and hepatitis C viral loads bode well for other coinfected transplant candidates. According to Dr. Fung, recurring hepatitis C after a liver transplant has been a major challenge. Hext is quite fortunate that his hepatitis C remains suppressed.

Transplant survival rates have not been as good in hepatitis C/HIV coinfected individuals as in people with HIV who receive transplants for other causes of liver failure. Pittsburgh’s survival rate pleases Dr. Fung. Of Pittsburgh’s ten transplants in HIV-positive patients over the four years, eight had hepatitis C, one had hepatitis B and one had experienced drug-related liver failure. Two patients, both with hepatitis C, have died. One stopped taking prescribed medications. Dr. Fung thinks that the other was probably a poor transplant candidate to begin with.

Pittsburgh also has transplanted four kidneys into HIV-positive patients. All these individuals are said to be doing well.

People with HIV now have many more transplant facilities available to them. At present, 18 medical centers perform liver and kidney transplants under special protocols or under their standard regulations. Private insurance and even Medicaid has begun to pay for the procedure and hospitalization. A large grant request has been submitted to the National Institutes of Health to fund a national research effort, and the University of California San Francisco (UCSF) has received $3 million from California’s state coffers to study and perform these transplants.

A report in The New York Times noted that of the 4,954 liver transplants performed in the United States in 2000, only 11 were in persons with HIV. It is unknown how many HIV-positive patients need organ transplants at this time. Last year, some 40 individuals phoned the UCSF center seeking transplants. Ultimately, 15 were put on the national list maintained by the United Network for Organ Sharing (UNOS). With a growing list of participating centers as well as improved insurance reimbursement, Dr. Fung expects that transplants for persons with HIV will become more or less routine in the very near future. “Look,” he said, “the Pittsburgh experience has been good.”

A recent meeting of the University of California-wide AIDS Research Program heard encouraging survival data, too. UC researchers collected data from 20 transplant sites across the country. Twenty-two kidney and 19 liver transplants that met the UCSF protocol’s criteria (no past or present opportunistic infections and very low or undetectable HIV viral loads) were included in their analysis. The researchers excluded another eight transplants in which the patients did not meet the protocol criteria. The HIV-positive transplant success rate (here, the survival rate at one year, not five) nearly matched or exceeded current UNOS rates for HIV-negative patients. The liver transplant success rate in the UC analysis was 95% while the UNOS overall liver success rate is 94.8%. Kidney transplants in those with HIV had 84% success. The UNOS kidney success rate is 87.9%. No significant HIV disease progression and stable CD4 counts with suppression of viral load helped insure graft success.

Hext and Kramer agree that any HIV-positive person who might require a liver or kidney transplant should request screening and UNOS listing through a receptive local transplant center. Many sites are just beginning and have transplanted only one or two persons with HIV. For this reason, Dr. Fung and his consortium should be contacted in order to help educate local centers. The consortium will readily send along the latest data and advise on procedures.

If a transplant candidate feels uncertain or doubtful that a local center is truly interested in listing and proceeding, Hext and Kramer urge that person to travel to Pittsburgh for additional evaluation. Individuals can be listed at more than one transplant center.

This article has been reprinted from the amfAR Global Link at www.amfar.org/GlobalLink

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