Arthur Berger was one of many patients I came to know in the space of the transplant clinic who was looking for treatment for their liver diseases, getting assessed for a transplant or who were already on the wait list and, thus, in the very midst of the unknowns and uncertainties of waiting for a liver transplant. Slightly older than most other patients, who were usually in their 50s or early 60s, the 70-year-old was affected by irreversible liver cirrhosis as well as nonmetastatic liver cancer and without a transplant his prognosis was grim. Because no long-term substitute treatments are available for failing livers, like dialysis for kidney failure, receiving a donor liver becomes a highly urgent matter for those with irreversible liver failure. In the context of failing livers, time becomes an extremely limited resource—and waiting for a transplant a particularly trying experience. While Arthur was listed for a transplant, his eligibility for a donor liver was continuously reassessed by medical tests and the clinics’ transplant board. For patients with liver cancer, the number as well as the size of tumours in the liver have to fit certain criteria. If their cancerous liver tumours exceed these strict limits, patients are no longer considered eligible for the treatment that they so urgently need, as they are assessed to have less chance of surviving the transplantation.
Thus, getting on the waiting list is not a unilinear process that cannot be revoked. Because of their fluctuating medical condition, patients are kept under continuous observation to assess their MELD score, to check their compliance regarding alcohol consumption or to ascertain whether their liver tumours fit the eligibility criteria. In other words, Arthur’s eligibility for treatment and with it his chance of survival were not the result of a one-off assessment. Getting access to the waiting list was not the end of medical tests, treatments and assessments. What followed was a continual process of evaluation that lasted for years, with the constant threat of losing his eligibility.
In addition to the same process that all patients must go through, regardless of their age or condition, Arthur‘s eligibility was further scrutinized due to his advanced age—despite the fact that there is no official age limit for transplant recipients. It was his treating physician who told me that he had argued in Arthur’s favour based on his biological age, because his physical constitution was that of a 60-year-old. Providing that the growth of his tumours was kept at bay, Arthur’s eligibility for a liver transplant, i.e. his access to the waiting list, was granted for one more year. His doctor told me that if he did not receive a donor organ in that set timeframe, he would be considered too old and no longer eligible. So, without knowing how much time he had left without a transplant and how long he would have to wait for a donor liver, Arthur’s chances got slimmer and slimmer with every month that passed by and he became increasingly impatient due to his medical emergency. His eligibility was as fragile as his health and while Arthur was glad that he was on the waiting list for a transplant, he was concerned whether he would outlive his wait.
When I visited Arthur at home, his mobile phone was omnipresent. It was always by his side—he took it with him when he went into the kitchen, into the bathroom—and he could not bear not having it next to him. He told me that since he had got on the waiting list, he always kept his phone within reach and made sure that it was charged all the time and indeed switched on because missing a call, the call, could mean missing out on his chance of survival. As a tangible manifestation of the invisible waiting list, the phone seemed to have become his constant companion—in his daily life and in his dreams. The desire to hear his phone ring had become so strong for Arthur that he repeatedly ‘heard’ it ringing—mistakenly, as it turned out, again and again—and that the wished-for ringing sound even followed him into his dreams.
The mobile phone not only symbolized Arthur’s hope for a transplant was also a continual reminder of his dependency on medical expertise and technologies. His imaginings of the transplant surgery followed him into the recurrent nightmares that he suffered from. Again and again, he was lying conscious and cut open on the operating table, with surgeons removing flesh and surreal objects such as a children’s bicycle from his open abdomen. Again and again, he woke up in a cold sweat in the middle of the night from nightmares so unsettling that he became afraid of falling asleep. While Arthur’s dream about the transplant clinic calling him on top of a mountain with his chance of a transplant was significantly less violent than these surgical nightmares, it also exemplified his unease with his life depending on a donor liver, and the sense of ‘existential immobility’ and ‘stuckedness’ he experienced while ‘waiting out’ (Hage 2009) his wait. With his survival being dependent on a transplant and his lack of control over the duration and outcome of his wait, Arthur felt like he had no choice but to endure this wait. Unable to live life the way he wanted, he felt stuck and suffered from the uncertainties this waiting period entailed. Nonetheless, he kept on waiting, as ‘the more one waits and invests in waiting, the more reluctant one is to stop waiting’ (ibid., 104), and Arthur did not want to miss out on his chance of a liver.
Glancing again and again at the phone, lying silent on the table, Arthur told me that he was bothered by the fact that he could not travel at the moment. After all, more travelling was one of the main reasons why he wanted a transplant. ‘I’m not done yet’, he said, ‘I want to see so much more of the world, have more time with my wife and see my grandchildren grow up’. Arthur’s mobile phone not only symbolized the possibility of treatment and the hope of prolonging his life, but was also an expression of his current immobility. If he planned to travel, he had to inform his transplant clinics, and he would temporarily be considered ‘nontransplantable’ for the time of his travel. He was still free to travel, but what if a donated organ became available during exactly that time? ‘I couldn’t bear to potentially miss out on that’, Arthur said. Thus, he preferred to stay close to the clinic; ‘day trips are fine, but all other trips have to wait for now’. Somehow, ironically, the mobile phone, which Arthur carried everywhere he went, seemed to make him immobile, as he had to stay close to his transplant clinic. Not being able to move as he wanted to made him feel ‘like a chained yard dog with a collar around my neck’, restricted in his movements and his freedom.
I want to argue that the particular workings of the ‘hope-generating machine’ (Nuijten 2003) of transplant medicine, with its intangible, fleeting waiting lists and its invisibly calculating algorithms, give rise to a waiting that is characterized not only by uncertainties but also by ambivalences of mobility and immobility. The mobile phone is in itself a symbol of mobility. But in the context of waiting for a liver transplant, the mobile phone symbolizes several other things, as the philosopher Francisco J. Varela (2001) pointed out in a phenomenological reflection on his liver transplantation. The procedures of being assessed and evaluated for transplantation were only the beginning of a time in which the mobile phone would become ever present:
After months I was requested to carry on me at all times a dedicated portable phone, and to never be far from the hospital. […] Weeks without end; every minute the pressure of my portable phone as witness awakening me to the immense fragility of my life and the tenousness [sic] of my identity in this tangle of deferred causalities. (Varela 2001, 267)
The mental strain involved in being reachable day and night was also articulated by other patients, such as Erika Schneider, a woman in her 60s who was waiting for a donor liver around the same time as Arthur: ‘This waiting definitely puts you in a state of restlessness. Because you always have to be reachable by telephone—even at night’. Even after receiving a transplant, the emotional stress of being ‘always ready’ for ‘the call’ remains a defining experience in patients’ accounts. Florian Weiss, a 24-year-old who had received a liver about a year before we met, recalled his time of waiting for his transplant: ‘You’ve got to be ready anytime; have your bag packed and the phone always in reach’. A psychologist I interviewed compared this state of restlessness and of always being-ready with the last 4 weeks of pregnancy, when expectant parents have to be ready anytime with their bags packed for the clinic. However, in the context of liver transplants this time is not limited to 4 weeks but can last indefinitely for weeks, months or even years.
It becomes clear that in the context of waiting for a liver transplant, the mobile phone is more than just a technological communication tool that makes it easier for clinics to reach patients. While the mobile phone signifies the ever-present hope for and chances of a transplant, it is also an uncomfortable reminder of one’s ‘fragility’ (Varela 2001, 267) and ‘stuckedness’ (Hage 2009) in waiting for a liver. Moreover, the ‘request’ (Varela 2001, 267) to be reachable is often experienced as a duty that causes an additional emotional burden during waiting. Thus, while carrying the hope for a future, the mobile phone also puts a strain on the relation between the patient who is waiting and the phone that might deliver the call. Hence, I argue that the mobile phone shifts back and forth between being a mere technological communication tool and a symbol of future aspirations, medical contingencies and existential im/mobilities of those who are waiting for a liver.
While landlines are clearly defined in their radius of reachability, mobile phones offer the possibility of being accessible everywhere at any time, allowing increased flexibility and mobility for those waiting for their transplant clinic to call. To receive the phone call from the transplant clinic carries the potential to offer a hoped-for ending to people’s waiting time and ‘existential and physical immobility’ (Hage 2009). The mobile phone is a reminder that the sense of ‘stuckedness’ that is experienced during this ‘expectant waiting’ (Elliot 2016) for a donor liver might lift at any time, allowing life to move on.