In January the New York Times published an article about a clinical trial initiated in 2017 by the University of Pittsburgh Medical Center. The study, which is also being conducted at King’s College Hospital, Massachusetts General Hospital, and Northwestern University, follows transplant patients with a living donor organ and then tapers the immunosuppressant medication down to one pill, with the aim to eventually reduce medication to nil.
When I read it, I was elated, but soon enough total jealously and dread set in. This will almost certainly never be an option for me. I’ve read and reread the article. I’m genuinely elated for those patients who will be able to live without immunosuppression drugs. And yet I’m still jealous. I’ve had such a struggle to accept the fact of my twice-daily doses of Tacrolimus and Mycophenalate Acid. Even with such delightful names, I’m still not there. I get the distinct sensation that the drugs are simultaneously saving my life each and every day and honestly, also ruining it. As the article states: “…the drugs are themselves hazardous, increasing the risks of infection, cancer, high cholesterol levels, accelerated heart disease, diabetes and kidney failure. Within five years of a liver transplant, 25 percent of patients on average have died. Within 10 years, 35 to 40 percent have died.”
I’m young – much younger than your ‘average’ liver transplant patient that skew the statistics quoted in this article, but the truth is that I’m still a transplant recipient and those stats fucking suck. And I still experience side-effects and live with the possibility of complications that may one day arrive at my doorstep after years-long (hopefully decades-long) medication intake.
I’m resigned to the reality, despite fantasizing about the alternative. I have no interest in making a martyr of myself over the medication and its side-effects. Nor am I interested in returning to how I sometimes was at the beginning, the “I-constantly-read-every-side-effect-and-obsess-over-eventualities-like-it’s-my-job” approach. Daily medication that both saves my life and gives me the runs has taught me the very useful technique (in life, in work, in relationship) of being able to hold two feelings simultaneously. Sort of like when I meet a really hot guy in a loud restaurant who knows my friend’s cousin but the words coming out of his mouth make me want to rip my eyes out, though luckily I only catch every fifth word so I can just focus on his jawline and tousled hair rather than the content of his miserable chat. I don’t lose too much sleep over my side effects (except for the common side effect of insomnia, which is depressingly ironic). I had such a rocky recovery, with so many peaks and troughs that in 2017 my doctor told me point blank that I’d never be on mono-therapy. Since the liver is such a regenerative and resilient organ, many liver transplant recipients end up only taking one pill, usually Tacrolimus (Prograf). When he said, in his precise way, that this would no longer be an option for me, I broke down in floods of tears. As per our usual dynamic, he didn’t understand why I was crying (in his defence, I managed to cry at Every. Single. Appointment.)
Looking back, I can now see his point (what’s the difference between one pill or two? Red versus blue?) I think it’s simply hard to accept that I have to take these drugs that keep me alive. Even if I don’t read them, the drugs do indeed come with such a heavily weighted list of perilous side-effects, and I can actually feel the harm they cause. And in my head (as well as in reality), the fewer pills I’m taking the better.
I’m much too much of a goodie-two-shoes to ever go off-piste or exercise any wilful negligence in modifying my medication intake without getting the green light from the team of doctors. I’ve read some harrowing stories about negligent patients who decide to take their medication into their own hands and as a result suffer awful consequences. I also have too much respect for my donor, my body, my doctors and my community to ever be so irresponsible (and I know what rejection feels like: it feels like death).
There is of course a small part of me that believes that I will one day be that patient who somehow achieves medication freedom (preceded, of course, by spiritual enlightenment). The doctors would exclaim “By George! She’s managed another miracle!” They’d look at the numbers on my multi-page blood tests and call me in for more labs. They’d proclaim, in total disbelief, “Well – this is unheard of, Nora – but these numbers prove that you’re the first patient in the history of transplant to completely and fully accept your liver into your body. You’re a medical miracle. Goodbye now. Please donate your body to science so we can study you at length and then name a wing after you.” I would shake my head, humbly decline having a wing named after me, and walk out of the clinic and into the smoggy sunset. My transplanted liver would just tick away in my body and my immune system would live with it in harmony and ne’er would the two combat again.
That is most likely never going to happen, if we’re being realists (which I hate having to be, another result of readjusting to life with a chronic condition). The meds can’t take away my daydreams—even if they rule my night-terrors! If we’re all talking on our video phones as the Jetsons predicted in the mid-1960s and only a step away from the hyperloop, I can still reasonably dream about zero medication needed to sustain my life.
At Northwestern, transplant doctors are asked everyday whether already transplanted patients are potential candidates for the study: “For now, the answer is that it is too late. These patients are not candidates for these new strategies to modify the immune system. But researchers hope that situation will change as they learn more.”
So, back to what we already guessed was true: I’m stuck with my medication for a lifetime. Just like any relationship, it will take work and loving compromise (if only in my head) in order to exist harmoniously with one another. Although it does seem that only one of us is doing the heavy lifting here – hand to mouth, twice a day, with a lot of back-chat from the Other.
Sometimes I wake up in the morning and I forget. I forget that this is who I am now. For a split-second, I’m just Nora, there’s nothing to do but wake up, have breakfast, take a shower, go to work. None of it happened. I’ve just continued on with my life and that liver scare was just that – a scare. It was all just a dream, wasn’t it? And then I remember again. And I make my breakfast, and I have my shower, and I take my panoply of life-saving medication because that is who I am now. And I’d like to be here for it again tomorrow.