Stop Waiting, Start Living

Waiting for an organ transplant is not like other kinds of waiting. It’s not like waiting for a prescription to get filled, or waiting for your turn at the post office. It’s not like waiting for a wound to heal, or a plane to arrive, or a cake to bake. It’s not like waiting for grief to subside or a heartache to mend. It’s a complicated and messy thing to wait for because while you wait for a chance to live, you are also waiting for someone to die.

I am purposely being blunt here because without the death of another individual, many organ transplants will never happen. There are of course exceptions to this, living donors can donate a kidney, or a part of their liver, or a lung. In a very rare kind of surgery a person can actually donate their heart while they are still alive, but that is only because the heart they have is not working properly for them, but may in fact work for someone else. But in most cases, the majority of cases, the transplant does not happen unless someone else dies.

Imagine if you broke your leg, and the only way it would heal, the only way you would survive was if another person died. Maybe that’s not a great example, think of a life threatening injury, one that requires surgery, or medicine, what if the only way you could get that medicine is if another person who shared the same blood type as you died? You want to live, we all, for the most part, want to live. Our most primal and fundamental instinct is self-preservation and so in most cases you will do what you can to avoid succumbing to a lethal injury and accept the treatment that will save your life. It’s what you, as a human mammal, are hard wired to do.

When Derek was finally put on the transplant list he was reluctant. He was about 5 days out from a multi-day hospital stay that included a trip to the ER and an overnight stint in the ICU. He was told many times by many different people that he was very lucky. Not everyone has an esophageal variceal bleed and lives to tell the tale. But he did and in his mind he was now “fine”. His disease is one that progresses slowly, it sapped his energy in micro units instead of all at once, like the flu. When you get the flu your whole body sends a signal that there is no way you will be doing anything productive for the foreseeable future. Primary Sclerosing Cholangitis (PSC) is not like that, it takes little bits of your life away, allowing your body to adapt to the reduction in energy. You begin to think this way of living is normal but it is not.

Most people looked at Derek and didn’t notice he was sick. Nurses and doctors however saw the tell tale signs of a failing liver, the yellowing skin that most people confused with a healthy tan, the whites of his eyes which were dingy instead of bright. He had dark circles under his eyes that indicated a lack of sleep, but who among us hasn’t gone through a patch of sleeplessness? He was tired all the time, but he fought through it. And so, despite his brush with death, he didn’t understand why now was the time to have a transplant.

And if not for the advent of living donation, chances are Derek would still be waiting for a new liver or he’d be dead. Blunt, but true. Because his disease manifests differently than other diseases, the markers by which his level of sickness wass determined, and therefore the urgency for transplant, were not elevated. The Model for End-stage Liver Disease (MELD) is a rough calculation for how long a person with liver disease has to live. It’s calculated by combining the results of several blood tests, and in most cases is a relatively accurate view of how sick a person is. The range for a MELD score is 6 (not sick) to 40 (gravely ill). In New England the supply of livers is much smaller than the demand and in most cases a liver will not be received until a patient has a MELD score in the 30s. (Nationally, the average is in the 20s). Derek had a MELD score of 14 when he was placed on the transplant list. He would be waiting a long time.

I gave him part of my liver because I didn’t want him to have to wait to live. I didn’t want to wait either, and I thought if I was capable of fixing his disease then I would. It was an honor, a privilege neither of us takes for granted. But it didn’t work. I gave him part of my liver and it couldn’t keep up with him and he got very sick, so sick that his MELD score shot up to a virtual 40. (A virtual 40 means his doctors believed that he had weeks, if not days, to live despite the blood evidence to the contrary and therefore elevated his MELD score above what the calculation was showing.) And so we went from waiting for a planned surgery to waiting for an unknown surgery. We were waiting for someone to die.

A virtual score of 40 meant he was near the top of the list, and while Derek was very sick–his skin was a bright yellow, a feeding tube was taped in place and even medical novices could tell he was suffering–he was also surviving with the liver I’d given him. The doctors gambled on being choosy. Over the course of a month, they were given several–we don’t know exactly how many–options for a replacement liver and they were all turned down. As I sat in his hospital room watching him sleep, I thought of the people who had been waiting for months, for years, for a liver that might not ever arrive. We had been waiting for days and then weeks and I felt like a trapped animal searching for a way to escape.

We waited a month for someone to die. A person with type B blood and a body size that was suitable for Derek. A person died and a team of medical professionals carefully managed the complicated process of removing the organs that could be transplanted into others. When a person dies and they and/or their family decide to donate their organs, the team of medical professionals who perform this final surgery pause before they begin. They pause in honor of the donor and the donor’s family. Sometimes they read aloud a statement from the family, but they always pause out of respect for the donor. They wait to begin.

We spend our whole lives waiting. We devote whole rooms to waiting. Sometimes for things we look forward to, sometimes for things we dread. We are waiting for events to happen and to cease, for lives to begin and lives to end. We are waiting for something better, something that might not ever come. If we stop waiting can we start living? If we stop waiting will it get here faster? If we keep waiting will it never arrive? There is a poetry to waiting, to the shared experience of watching a clock tick, a day pass, a year go by. Last year we waited for this year, and this year we’ll wait for the next. We will wait because we want to and we will wait because we have no choice.

 

 

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