How to Do a Liver Transplant (19 page)

Love you Lynn

D
uring my time in the States my life was touched by some amazing patients; a patient in his 70s who returned to his demanding job within three weeks of his transplant; a snowboarder who won an Olympic medal shortly after his; and hundreds of people who were kind enough to allow an Australian girl to look after them for a little while. But the most remarkable patient I have had the privilege to care for was a lady called Lynn. She was a 32-year-old woman who came from a small town in Colorado. I met her for the first time just a few hours before the operation that would threaten her life and eventually save it. I couldn't know it at the time, but the
first time I took her hand would mark the beginning of the strongest bond I would ever form with a patient, and the most hours I would ever spend looking after any one person.

Lynn was a happy and energetic single mum raising two small girls. She worked very hard managing her family's business, trying to give her kids a good life. Lynn's world came crashing down when, out of the blue, she got a pain under her ribs. She went to her doctor and got a scan that, horrifyingly, revealed dozens of abnormal spots in her liver. Lynn had an unusual cancer called haemangioendothelioma. This tumour is so rare that there are only a few hundred cases reported around the world, ever. The cancer spreads from the liver to other parts of the body and after a few years it is generally fatal. There are very few cancers that can be treated well with a liver transplant but fortunately haemangioendothelioma is one of them. The catch is that patients with this type of cancer must wait a long time for a transplant because they do not have liver failure. The system that allocates organs for transplant heavily favours those whose livers have cirrhosis and don't work any more over those whose livers are killing them from cancer. The transplant doctor looking after a cancer patient can apply to a board to give the person extra points, bumping them up the list, but cancer patients still wait too long for a second chance at life to come along. Meanwhile, every minute of the day the cancer is growing and spreading throughout their body – time is of the essence.

Lynn's tumours grew and it became apparent that she would not get a liver transplant from a deceased donor any time soon. Out of nowhere, one of Lynn's friends came forward and volunteered to donate the right half of her liver to Lynn.

Lynn's donor also had small children. She knew the risk she was taking, but would not be deterred from helping her friend. She went through the weeks of rigorous medical tests and was deemed suitable to donate. It was then full steam ahead toward the day that Lynn's life might begin again.

Lynn and her donor both had big extended families. When the day of the operation came, the families were all there at the hospital, keeping vigil, pacing around the waiting room. They prayed and drank endless cups of coffee, waiting for any word that things would be all right. I cannot imagine how it must have felt for those families, knowing their two girls' lives were in the hands of strangers. There was such a crowd of well-wishers, we could actually hear them all talking while we were in the operating room.

The surgery to remove the right half of the liver from Lynn's donor finished first and went very well. A few hours later we put the last few stitches into Lynn. Tired, but pleased, we strode out to the waiting room to tell the expectant families that things were OK. To our surprise, we were mobbed by Lynn's mum and dad giving us joyful
hugs as the rest of the family erupted in a raucous outburst of relief. We were even treated to a Mexican wave. The shouts of approval went on for what seemed like five minutes. Little did they know that this was just the first of hundreds of nights that they would spend in that dreary waiting room.

Both Lynn and her donor spent the first night in Intensive Care, and by the following day they were back on the general transplant ward in beds side by side. Lynn's donor did really well and went home after a week without a problem. Lynn's path to recovery was not to be so straightforward. It would be exactly one year before she would walk out of the hospital again, in many ways in much worse shape than when she entered it.

In the middle of that first night after her transplant, Lynn started to bleed from her bowel. Blood came pouring out of her backside and she endured a torturous night sitting in an adult diaper passing sticky black poo. This is not an uncommon problem because bleeding and liver transplant go hand in hand. In the first 24 hours after the operation, the blood is very thin and does not coagulate well. A normal liver continually manufactures molecules that allow the blood to clot, but when there is a new one this process takes a few days to kick in at full capacity. How fast the blood clots is a good way of telling if a new liver is working. Bleeding from the bowel like this usually stops by itself and as long as the patient is supported with
blood transfusions, everything usually turns out fine. Even when you re-operate on these patients, the bleeding has usually stopped by the time you get in there.

Lynn's bleeding didn't stop. The next morning, after sitting by her bed all night pouring blood and clotting products into her veins, it became obvious that she needed to return to the operating room. We opened her abdomen again and stopped the bleeding from the bowel.

We hoped that this would be the end of the problems, just a small setback. But within a few days, Lynn became unwell again. This time she developed severe back pain, and blood tests revealed that she had one of the most terrible conditions a human can endure – pancreatitis. This is a problem you would not wish on your worst enemy. One of the very first things every doctor is taught in medical school is ‘Don't mess with the pancreas.' The pancreas is a gland shaped roughly like a fish that makes insulin, to control the sugar levels in the blood, and a corrosive alkaline juice that digests food and anything else it gets hold of. When the pancreas becomes inflamed, it spews forth a tidal wave of intensely alkaline juice that causes a ferocious and unstoppable chemical reaction. This normally innocuous little organ begins to digest itself and the fat surrounding the kidneys and bowels. The body will literally eat itself. All manner of poisons are released into the bloodstream leading to a cascade of devastating events. The lungs fill with fluid, the liver falters, the kidneys fail
and the stomach becomes paralysed, filling with litres of bile and acid. Once started, nothing can be done to stop the carnage. This is pancreatitis.

In its severest form, pancreatitis kills one in three people and the rest spend six months or more recovering in hospital, and these are the numbers for those who were previously healthy. Lynn was starting way behind the eight ball by the very fact that she had just come out of a liver transplant for cancer, a potentially lethal problem all by itself. She only had half a liver and she was on powerful drugs to suppress her immune system so she would not reject it. This posed a massive problem, as these drugs also stop the body from fighting infections and slow healing down to a snail's pace. Lynn was in grave danger.

She became increasingly unwell and we quickly needed to put her into an induced coma that she would not awaken from for six months. During this time, every orifice of her body was filled with a tube and her every function was controlled by a machine. A ventilator took her breaths for her and a dialysis machine washed her blood to get rid of her waste when her kidneys failed. The fat that surrounded Lynn's pancreas began to liquefy and, like a stagnant swamp, bacteria multiplied unchecked in the foul broth this created.

Lynn's chances of surviving this battle were near enough to zero, but battle she did. I saw her struggle and it profoundly affected me. I had cared for plenty of critically
ill people before but there was something about Lynn that made me try harder than I ever had. I decided I was going to fight alongside her for as long as it took. Many nights I sat by her bed in the Intensive Care Unit, making small adjustments to her care: balancing the fluids going in and coming out, giving her blood, analysing her blood tests, adjusting the ventilator and changing her drugs. It was minute-to-minute work and I did it because I was determined that this lovely woman who did nothing wrong would survive. Maybe it was because Lynn and I were about the same age, or perhaps I could not bear the thought of her children growing up without her. I was pregnant during most of her stay, so these feelings were amplified. Whatever it was, I had a strong resolve deep in my core that I would not let her die.

I lost count of the number of times I called Lynn's parents and her partner to tell them that tonight would be the night when we would lose her. They would come up to the hospital (if they weren't already there) and hold an all-night vigil. Somehow, she always made it through to the next morning. Her kidneys, bowels and pancreas did not work. Her lungs were waterlogged – the little sacs that usually contain air were filled with fluid and she was literally drowning. For more than a week she had only 50 per cent of the oxygen in her blood that a human requires to live. I became fearful that we were only keeping a body alive and that Lynn's brain would not make a meaningful recovery.
There was a real chance we were working so hard to save someone who would never walk or talk again. I worried every day that Lynn's family would have to take home a brain-injured invalid who would require 24-hour care. But every time we considered taking away her life support, she would make some tiny improvement that would convince us otherwise. There was always a sign that she was still fighting, so I didn't give up.

When doctors look after critically ill patients, it is really easy for us to lose sight of the fact that there is a family whose lives are also profoundly affected by their loved one's illness. Lynn's mother and partner essentially moved into the hospital that year to be by her side and to take part in critical daily discussions about her care. Patients like Lynn undergo literally hundreds of procedures. Each one needs careful discussion regarding the pros and cons and written consent has to be given. Lynn's family stood by and attended to these things with love and care. Suddenly their work and their personal interests had to be put on hold as they gave us their undivided attention. They had begun to live a strange transient life, sleeping in hotel rooms and on mattresses on the floor of the hospital. In many ways, I formed a closer bond with Lynn's family than I did with her, at least initially, as we made difficult decisions together. It makes all the difference in the world to be dealing with a family who are understanding and patient and Lynn's family were amazing.

We opened Lynn's abdomen more than 15 times that year to scoop out handfuls of foul, grey, digested fat. The smell was so bad it would make me gag. It was like there was a dead animal inside her. When an abdomen is opened and closed so many times, the muscles rip and will not hold stitches. The edges of the surgical wound retreat and the skin of the abdominal wall dies back. There was not enough tissue to cover Lynn's bowels and they protruded grotesquely out of her abdomen. All we could do was protect them with a plastic bag and leave her abdomen gaping open when she returned to the Intensive Care Unit. With the loss of the protective barrier of the abdominal wall, eventually holes formed in Lynn's bowels and litres of faeces ran uncontrollably onto her skin. The corrosive fluid burned it until it was red raw. She lived in this torturous state for months.

Every patient with severe pancreatitis develops multiple infections of the chest, urine and blood. In someone like Lynn who had undergone a transplant, these infections were so severe at different times that we decided to stop her anti-rejection medication completely to give her body a chance to help itself. Within a few days, the inevitable happened and her body rejected her new liver. She became deeply jaundiced – her eyes an alien shade of fluorescent yellow. Her blood became as thin as water, her hair fell out and she stopped making the vital proteins that she needed to keep fighting and healing. We would treat her infections
with the most aggressive antibiotics available and at the final hour, swoop in and rescue her rejection with medications so powerful that they can eventually cause cancer. Three times, we did this. It was unheard of, but still Lynn survived.

One evening, the pancreatitis ate away the artery to Lynn's spleen and it ruptured in the wee hours of the morning. Again, I got a call from the ICU to tell me that she was in trouble and rushed in to find her bleeding to death. Her blood pressure was dangerously low and she required dozens of bags of blood. Again we operated to remove her spleen and called her family to tell them it was likely she would die. Again, she didn't. Around this time I was spending four to five hours each day at Lynn's bedside, caring for every facet of her being.

After six months on the breathing machine in an induced coma, one day, for no apparent reason, Lynn started getting better. With each passing day, her vital signs normalised and she began to move around on the ventilator, giving us subtle signs that she was alive. An eye would attempt to flutter open or a finger would move a little. There was less and less daily drama. I dared to hope that Lynn's brain may have survived all the insults. When you look after someone who can't talk back to you for hundreds of days, you quickly run out of things to say. You aren't even sure if they can hear you. I would prattle on to Lynn in a one-way conversation about how my pregnancy was
progressing and the different things I had done and seen that day. I would let her know that her kids were doing great and, up to this point, there had been not even a flicker of recognition.

Each morning we would begin our rounds in the ICU. I walked in one day and greeted Lynn with a ‘Good morning' and began to tell her about the weather and the news of the day as I read her latest set of blood tests. I announced that Arnold Schwarzenegger had just been elected governor of California. This statement made her eyes fly open with surprise and resulted in me reeling backward in shock. Could I have been mistaken? Did she really just respond to what I had said? It was like a scene from a movie. The night nurse came in and said it was true. Lynn had woken up in the night and was even writing messages. It was like a switch had been turned on and she was back. Lynn continued her rapid improvement over the next few hours and it was quickly obvious that her mental faculties were still well intact. She demanded a big pad of paper and wrote volumes of notes, telling us all the messages and gripes she had not been able to express over the last six months as she drifted in and out of consciousness. A lot of the notes were about spiders – the morphine we had been giving her for pain had been torturing her brain with horrific hallucinations about spiders crawling over her.