Another surprise had to do with money. According to Kay, the doctors, at the Zhengzhou hospital, or the hospital administrators, demanded a substantial fee – she thought it was in the range of $20,000 to $25,000 – to let the operation go ahead. Don said that Max told him the fee was close to the annual operating budget for the hospital. ‘I think they knew what they had,’ Kay commented, meaning that they had Max over a barrel. ‘Bob was a little taken aback.’
One expectation was fulfilled, however: according to Iacono, foetal tissue was readily available. ‘I’d say, “I need some things to dissect, guys, because I haven’t had any practice in my country, bring me some stuff.” And it would be, “You need foetal? OK, no problem.” And a couple of hours later they’d bring me something, and I’d say, “Where did you find that?” and it was, “Oh, in the dustbin.”’
In a medical paper describing the case, Iacono said that the samples used for the actual transplantations were obtained in accordance with US National Institute of Health guidelines, which would include obtaining the mother’s consent to the use of the tissue for transplantation. Max told Don that a female gynaecologist rode through nearby villages on a bicycle, telling people what she was looking for. If so, she would presumably have had the opportunity to explain the planned use of the tissue to the women who had the abortions, and to get their agreement.
Some other research groups who were doing foetal-cell transplants, such as Curt Freed’s, made an effort to tissue-match the foetal tissue to the recipient, at least at the relatively crude level of the ABO system (the system of antigens commonly known as ‘blood groups’, but actually present in all tissues). Iacono did not tell me whether he did this, but it is unlikely that the Zhengzhou hospital had either the facilities or the expertise to carry out such an analysis. If they didn’t, the compatibility of the foetal tissue with Truex’s own tissue would be pretty much a hit-or-miss affair. Iacono simply assumed that the tissue would be a mismatch, and he started Truex on immunosuppressant drugs – specifically, steroids and a drug called cyclosporin. The hope was that these drugs would prevent Truex’s body from rejecting the transplanted tissue, and he would need to continue to take them for the rest of his life.
Having taken these preliminary steps, Iacono started the transplant procedure, which consisted of three separate operations. On the first day, he took tissue from a foetus that he judged to be 16 weeks old. It’s now known that dopamine cells from foetuses this old survive poorly after transplantation – by this age, they have largely or entirely lost their ability to survive in a new host – but at the time that may not have been so clear. At any rate, having obtained the foetal tissue, Iacono opened Truex’s scalp and pushed fragments of the tissue down the implanted catheter that led to the striatum on the right side. Then he removed the catheter and closed the scalp incision. It was a very brief operation.
A day or so later Iacono repeated the procedure, again using tissue from a 16-week-old foetus. This time he implanted the tissue in Truex’s left striatum, using a somewhat different technique: he loaded the tissue into a small, spring-shaped metal coil and pushed the entire coil down the catheter into the brain tissue; then he removed the catheter, leaving the tissue and the metal coil in place.
For the final procedure, Iacono used tissue from a much younger foetus – it was 16 millimetres long, which would make it only five or six weeks old. Strictly speaking, it was still an embryo and not yet a foetus. This age was younger than what is now considered the optimal age for transplantation, and the tiny size of the foetal brain at that age made accurate dissection a major challenge. Anyway, Iacono dissected out the tissue he wanted, broke it up into tiny fragments, injected it into the reservoir attached to the third tube, and squeezed the reservoir to force the cells down the tube and into the lateral ventricle. After doing so, he left the third tube and reservoir in place, because he planned to use it to take samples of Truex’s cerebrospinal fluid at later dates.
Injecting the cells into the ventricle, rather than into the substance of the brain, was a novel and risky step. Iacono did this with the hope that the cells, once in the ventricle, would secrete chemical ‘growth factors’ that would in turn promote the survival and growth of the cells he had injected into the striatum. He told me that there were animal experiments to support this hypothesis. But the ventricles of the brain are linked together to form a single tortuous waterway through which the cerebrospinal fluid circulates. So putting cells in the lateral ventricle was rather like throwing alien water plants into a particular pond in the Everglades: one might expect them to spread widely through the system, with unpredictable and possibly harmful consequences.
Iacono told me something even more remarkable about the transplants he performed on Truex. He didn’t take the foetal tissue from the brain region that everyone else was using – the
substantia nigra
– even though that was the location of the dopamine cells. ‘That just shows you my contempt for the dopamine hypothesis,’ he said. Instead, he took tissue from a strip of the brain near the midline, running from near the front of the brain all the way back to the medulla, where the brain narrows down to join with the spinal cord. This zone contains a diverse assortment of cells that use neurotransmitters other than dopamine. As mentioned earlier, Iacono thought that some of these other cells and chemicals played a more central role in Parkinson’s disease than the dopamine system.
Truex came through the three procedures without any problems, and within a few days Iacono decided that it was time to go home. But that was easier said than done. On May 20, the Chinese government, in response to the increasing unrest and continued demonstrations, declared martial law. All regular forms of transportation were halted. ‘I had to give up all my cash and my passport for several days,’ said Iacono, ‘and they finally dragged four people kicking and screaming off a Russian turboprop [to make room for us]. I was at the point of tears by then. The tyres of that plane were worn down to the Dacron. But we finally got home, and three days later I heard that that very same plane had crashed and killed everyone onboard.’
Kay added another detail related to her by Max: on June 4, the two men passed through Beijing’s Tiananmen Square in a pedal-powered taxi on their way to the international airport. Just hours later, the massacre began that cost the lives of hundreds or thousands (accounts differ) of students and workers.
Truex finally rejoined his family in Manhattan Beach. He was very tired, but hopeful that the cost and exhaustion of the trip would pay off for him. And, according to Kay, he had good things to say about all the people who cared for him in China. In that connection, Jim Slosson added a fairly implausible detail that he supposedly learned from either Truex or Iacono. During his hospital stay in China, Slosson said, Truex spent his time running up and down the corridors after the Chinese nurses. ‘The good-looking ones,’ Slosson added, with a wink.
Before long, the family moved back to Boston. According to Iacono, Truex’s condition improved greatly over the 18 months that followed the surgery. Already at six weeks his facial expressions were livelier, and soon thereafter his speech and his gait improved. By 15 months, he was able to resume normal daily activities, Iacono told me, and he even began running again in order to coach one of his sons. Iacono described the overall improvement as ‘so dramatic.’ He did, however, offer one caveat, saying that no one had checked to see if the immunosuppressant drugs that were used to prevent rejection of the grafted cells might themselves have a beneficial effect on the symptoms of Parkinson’s disease. When I asked him to expand on this far-from-the-mainstream notion, Iacono clammed up. ‘I’m not going to tell you that stuff,’ he said. ‘I have to write my own book about that.’
Iacono wasn’t alone in his belief that Truex did well after the transplant: other people who knew Truex before and after the operation were of the same opinion. ‘There was nothing dramatic or immediate,’ said Kay. ‘I remember, I think it was about a year after surgery, Bob called to see how he was doing, which he did periodically, and I said, “You know what, I think Max is doing very, very well, because it just occurred to me that for about the last three weeks to a month I haven’t been doing anything for him, he’s been doing everything for himself.”’
Don Truex agreed. ‘His facial expressions were better, his speech was better,’ he said. ‘There’s no question in my mind that he was substantially improved.’ Jim Slosson also said that Max was better after the transplant.
Iacono was impressed enough with the results that he took other patients to China for similar transplants, but he performed the surgery in a more modern hospital in Shanghai rather than in Zhengzhou. He described some of these cases, including Truex’s, at several scientific meetings that he attended.
In the second year after the surgery, Truex visited a neurologist by the name of Raymon Durso, who is a specialist in Parkinson’s disease at the Veterans Administration hospital in Boston. Durso also has an academic appointment at Boston University Medical School.
‘I think I saw him a total of three times,’ Durso told me. ‘He definitely said he was improved. However, when I went over the history, his doctors had, for example, added Deprenyl, and so I was never willing to attribute his improvement to the surgery.’
The United States’ Food and Drug Administration (FDA) approved Deprenyl for the treatment of Parkinson’s disease in the same month that Truex received his transplants. In some patients it significantly alleviates the symptoms of the disease, and it can also cause euphoria, so that a person may feel and act more upbeat even if the physical symptoms are unchanged.
The last time Truex visited Durso was in March of 1991, a year and ten months after the trip to China. Durso says that Truex seemed quite well at that time, aside from some swelling of his ankles. Such swelling can be caused by mild kidney failure, and Durso confirmed this diagnosis by means of blood tests. Chronic mild kidney failure is a common finding in people who are treated with immunosuppressant drugs.
Although he seemed reasonably well to Durso, Truex evidently did not seem well to himself, because right around that same time he began telling Kay that he was dying. Kay didn’t take him seriously at first, but he was insistent. When she asked him what made him say that, he replied, ‘I just know, I just don’t feel the same, I just know I’m dying.’ Then, over a period of ten days or so, Max began giving Kay specific instructions concerning his death. ‘He told me about his life insurance policy,’ Kay says. ‘He had me go into Boston and sell off some stocks that he didn’t want to cause problems afterwards, and he had me write down that he wanted to be cremated, and where he wanted his ashes.’ He also gave Kay power of attorney for medical matters, and told her that he did not want to be resuscitated if the question arose. Kay realised that Max was very serious about his belief that his life was ending, even if he couldn’t verbalise the reasons.
Two weeks after the visit to Durso, on the morning of Sunday, March 24, Kay woke to find that Max was already out of bed. She got up and went downstairs in her nightgown, and she found Max in the living room. This is her account of what followed. ‘I asked him if he wanted me to fix him some breakfast, but he said, “No I’ve already had something. I’m kind of tired, I think I’m just going to lie down on the couch for a while.” I wasn’t feeling well either, so I lay down on the other couch. The kids weren’t up yet. I was dozing, and then I heard him moving around, and it was like he caught himself on the arm of the couch, so I got up and I said, “Do you need help, are you OK?” He said the strangest thing – it was like something changed, something was going on in his head – and he said out of the clear blue, “I think I can still pee in a can.” And then he just kind of slumped. I looked up, and my son John had come down the stairs and was right there. By then we were in the doorway between our living room and our kitchen, and I said to John, “Grab a chair quick, Dad’s going down.” So he came over and we got Max into a chair, and he kind of slumped over and it was like he was snoring: a puff and a puff and a puff and then a rush of air out of his lungs. And I said, “John, stay with Dad, I’m going to get dressed, I’m going to take him to the emergency room, I don’t know what’s happening.” And I came back down as soon as I could and said, “How is he?” John said, “Fine, Mom, he’s sleeping.” But he wasn’t sleeping.’
Kay called an ambulance, but it took 20 minutes or so to arrive. Kay knew that Max was dead. Gene and Mindy came downstairs, and the four of them talked about what had happened. When the paramedics finally arrived and began to insert a tracheal airway, Kay remembered what Max had told her just a few days previously, and said, ‘He doesn’t want this.’ The paramedic said, ‘Do you have something legal?’ and Kay explained about her power of attorney.
Then the paramedic took out the tracheal tube and said, ‘He’s been gone for some time, it would have been much too late anyway. I was doing it mainly for the children’ – presumably to assure them that everything possible had been done to save their father. The ambulance crew left, after telling Kay to call a funeral home and have them collect the body.
Even though she and the three children were in a state of extraordinary shock and grief, Kay remembered something else that Max had told her during his final days, which was that, when he died, she should contact Iacono because he would want Max’s brain saved for scientific study. And when Kay Truex called Iacono later that Sunday to let him know that Max had died, he was indeed very eager to have Truex’s brain examined. He knew that it might be possible to detect the presence of the transplanted cells. To show that these cells had survived for nearly two years after the transplant surgery would be an important scientific finding, and it would provide a partial validation for the foetal tissue treatment. There was no reason to suspect, at that point, that the transplants had anything to do with Truex’s death – he might easily have died from some other unrelated condition such as a heart attack. So, after some calls between Iacono and Dr Durso, Kay was asked to have Max’s body taken to the New England Medical Center.