Few Donors, Little Time to Save Doctor as His Heart, Lungs Fail

LONG BEACH — Some days, James Mosso can’t decide if he’s waiting to die or waiting to live. One recent gray morning, he seemed to believe the worst as he talked about his sandy-haired 7-year-old son.

“He’s beginning to ask detailed questions. . . . At this point he just knows that his father’s heart and lungs aren’t working right and he needs an operation to get better.

“I’ve been tempted many times, when I’ve been depressed, to commit suicide,” Mosso quietly confessed. “But I can’t do that. I just would never voluntarily take myself away from him.”

The diagnosis is pulmonary hypertension. Clots in the weblike vessels of Mosso’s 43-year-old lungs have raised his blood pressure and strained his heart, the way a faulty generator slowly saps power out of an automobile battery.

His condition is terminal and all the more difficult to accept because he is a Long Beach neurosurgeon, practiced in the most intricate medical art and a saver of lives that once, too, were on the brink.

But what especially frustrates Mosso is the knowledge that a delicate heart-lung transplant could miraculously turn his condition into one of nearly complete recovery--if doctors can find healthy organs from someone of similar size and blood type. After 10 months, however, he is still waiting, along with a dozen other patients on a list at Stanford University Medical Center, knowing that statistics expect him to die before he gets a second chance at life.

Mosso blames the dilemma in part on physicians like himself, who haven’t done enough to tell families how one person’s death can mean new life to another. It’s not that there aren’t enough people dying with harvestable hearts and lungs, it’s that not enough doctors, patients and family members are prepared to face the donor question at the moment of death.

Better Patient Than as Doctor

“Unfortunately, I didn’t do (as a doctor) what I’m doing now (as a patient).”

Married, a devoted father and prospering physician back in April, 1983, Mosso suddenly ran out of breath one day while bounding up a stairway heading for his rounds at Long Beach Community Hospital.

“I knew there was something dreadfully wrong,” he said.

Two days later he suffered a minor stroke, and ever since has been in and out of hospitals between bouts of pneumonia and severe chest pains, each time gradually growing weaker. On almost a daily basis, his emotions sway between optimism and despair.

“This last hospitalization (over Thanksgiving) was--well, they weren’t sure that I was going to survive. And they began to tell me in rather direct terms for the first time that if I didn’t get a transplant soon I wasn’t going to survive. They were talking about months.

“This just knocked me over . . . I felt, ‘My God, I had this hope and there’s this answer waiting out there, and I can’t get it.’ It seemed like such a waste.”

Keeps Diary of Thoughts

These days, Mosso occupies himself by researching medical issues and scrawling a nightly diary of his thoughts. He stays inside his fashionable condominium near the Cal State Long Beach campus, usually sitting with a container of oxygen at his feet. A plastic tube trails up from the apparatus and loops over each ear before passing under his nose, where two tiny holes allow air to escape, hissing as if someone were blowing gently through a straw.

When he asks his local doctors how much time he has left, they answer with the question, “What do you hear from Stanford?”

While the Stanford center is renowned for performing more heart-lung transplants with greater success than any of about 10 similar facilities in the world, “There’s nothing we can do sometimes to bring about a donor,” explained Marguerite Brown, donor coordinator. Mosso’s predicament, she said, is not unusual. “The majority of our candidates will die on our waiting list. It’s very difficult, obviously, to have them think there is something that would save their life if only they could get it.”

Since the program began at the Palo Alto school in 1981, 40 heart-lung transplants have been performed, medical center spokeswoman Mary-Nelson Campbell said. The first recipient was an Arizona advertising executive also plagued by pulmonary hypertension, and she lived a reasonably healthy five years. Twenty-one of the patients who followed remain alive and, in many cases, are virtually normal. One Texas man resumed his job as a high school football coach, still able to bench-press 300 pounds.

3 Months Between Donors

And last year was the center’s most active with 11 operations, almost double the year before. But until a woman in her 20s received a transplant on Dec. 18, doctors went three months without finding a single suitable donor.

Brown characterized the disturbing stretch as both a sign of the season--statistically there are always fewer deaths in the fall that result in organ donations--and a sign of the times. Ironically, as tougher drunken driving and seat-belt laws continue to reduce highway fatalities, the pool of available transplant organs will correspondingly shrink.

Sadly, the best heart-lung donor is someone who has suffered only a head injury and has been declared clinically brain dead with no chance of even partial recovery. Even then, time becomes an enemy, for the two organs must be removed as a unit and transplanted within hours or infection will set in.

“There are a lot of these false alarms,” Mosso said, explaining that some transplant patients have been brought hurriedly to the operating table only to learn that the donor organs had developed some defect that made them insufficient.

“On one occasion they called me in the middle of the night,” said Mosso, who never goes anywhere without a paging beeper. “They said not to leave but that they’d call me back. When they saw the X-rays of the patient’s lungs they found he had pneumonia.”

Required to Seek Permission

California law goes further than most states in requiring hospital officials to approach relatives of brain-dead patients for permission to harvest transplantable organs. Nevertheless, doctors often fail to adequately help patients and relatives understand details of the procedure as well as the vital need, said Mosso’s Long Beach lung specialist, Dr. Robert Lugliani.

To “a great majority of us,” Lugliani said, the subject is “foreign. . . . Until my experience with Dr. Mosso, it had been a very distant, research-type of issue. I suddenly realized how many times over the last five years, three years, two years I’ve treated someone who had organs to donate. It just didn’t occur to me.”

Mosso said he and other neurosurgeons have too often left other, less-specialized physicians to explain the difficult concept of brain death to relatives of the terminally ill. A neurosurgeon, he said, “tends to want to devote his energy to his other patients, the ones he still can save.”

Admittedly, it is always “very difficult” to talk about organ donation with a family who has just suffered a death. “Two or three days ago (their relative was) normal and healthy and all of a sudden they are brain dead. They always think there is hope . . . they wait for a medical miracle.”

‘Some Sort of Monster’

“When you’ve been unable to save their son or daughter,” Mosso continued, “you get the feeling they think you’re some sort of monster trying to take organs from someone that’s not even dead yet. They can see the heart rate on the monitor.”

Physicians guarding against a malpractice charge also wait longer to pronounce patients brain dead, Mosso said, which only gives any infection present more time to harm usable organs.

Mosso said the whole process would be less painful for all if more families would discuss organ donation before an emergency occurs.

“The tragedy of death has to be turned to the gift of life,” he said.

Savors Remaining Days

As for Mosso, all he can do now is wait and savor the most of what limited life he has. Although recently divorced, he remains consumed with love for his son and thinks about him constantly.

“His mother is involved with another person who is a wonderful man, he’s so wonderful with my son. But the thought of them doing things that I would love to do is, is very difficult.”

“One thing a disease like this makes you realize, after you get over the depression, is that everything else is so petty, so inconsequential, so absolutely meaningless. The only thing that is important is relationships. If I could live like this or maybe improve enough to do some things, I’d be satisfied for the rest of my life.”

For Mosso, the waiting has been even more agonizing because he knows so much detail about what is happening to him physically, how his chances of living dwindle day by day.

Focuses on Hope

“I have to keep my mind out of depression and the thought of dying,” he explained, hands tightly folded on his lap. “I have to focus on the hope that I’m going to get a transplant and survive. . . .

“I have led a very good life. I have done many good things that have been extremely gratifying, I have been able to travel to some extent. . . . I have been extremely fortunate to lead a more productive and more enjoyable life than many other people are privileged to.

“But on the other hand, what helps you accept dying?”

His eyes mist and his faint voice falters.

“If I didn’t have my son it would be so much easier to take. I could really just wait and hope for the best, and whatever happened happened. But now I just have this tremendous desire for this (chance for a transplant) to be successful. He’s what keeps me going.”