bioethics, patient stories, physiology

True Gift

Late one night at the nurses’ station, my co-workers and I were casually discussing organ donation. An intermediate care unit that saw a variety of pancreas, liver, and kidney transplant patients, it was not an uncommon conversation topic. Occupying two of our beds alone were two liver transplant patients who had become main stays on our unit after one post-surgical complication after another.

The liver is a boomerang-shaped organ located in the upper right quadrant of the abdominal cavity.  It is largest internal human organ and the heaviest organ, weighing an approximate 3 pounds. It is necessary for a wide range of bodily functions: toxin excretion, blood detoxification, breakdown to metabolism of fats, proteins, and carbohydrates, synthesizing clotting factors, creating bile, storing glucose, vitamins, and minerals, preventing system-wide infections, activating enzymes, and more.

Often, the liver uses its own energy stores to provide essential energy to other vitals organs such as the brain. Too, because of its role in detoxification, the liver is very vulnerable to injury. In a sense, the liver is an innately charitable organ and a very charitable one at that.

“They can have everything, except my liver,” a nurse declared that night. “I’d never donate mine,” another chimed in. The rest of the crew nodded in agreement. Despite the liver being arguably the most altruistic organ, I know few healthcare providers who would willingly donate it.

The most common causes of liver failure (and subsequent need for transplant) in the United States are linked to detrimental patient behavior. Acute (sudden) liver failure is most often due to drug-induced liver injury. Tylenol (acetaminophen) is the leading culprit. Tylenol, like all over-the-counter medications, clearly states it’s maximum daily dosage. Tylenol overdose is rarely accidental.

Chronic (long-term) liver failure is most often due to cirrhosis, a chronic scarring of the liver tissue which inhibits its function. Cirrhosis is most commonly due to alcohol abuse and Hepatitis C. Alcohol abuse is an addiction and fairly self-explanatory. Hepatitis C is most commonly associated with needle sharing, a practice among intravenous drug users. According to the Centers for Disease Control and Prevention, 70-90% of IV drug users in the 1970s and 1980s have Hep C. Even with current public health education, common knowledge about the risks of blood-borne diseases, and needle exchange programs to prevent infection, about 1/3 of 18-30 year-old IV drug users have Hep C.

Liver failure can also be due to hereditary traits, genetic diseases, autoimmune disorders, inherited diseases, viruses, and other causes. Nevertheless, the majority of liver transplant candidates have a history of drug and alcohol abuse.

The United Network for Organ Sharing (UNOS) manages the United States’ organ donation and transplant system through the Organ Procurement and Transplantation Network (OPTN). UNOS uses the Model for End-Stage Liver Disease (MELD) score for candidates 12 years old and up to calculate the most urgent need for a transplant by objectively predicting who is most likely to die from liver failure in the next 90 days. MELD scores are based on three lab tests: bilirubin which measures how well the liver excretes bile, creatinine which measures kidney function (which is impaired in severe liver disease), and INR which is an abbreviation for international normalized ratio and measures the liver’s ability to make clotting factors.

MELD scores run from 5 to 40. The higher the MELD score, the more urgent the need for transplantation and the great risk of death in the next 90 days. Based on my blood work from August 2015 and an estimated INR, my MELD score is 6. If I die in the next 90 days, I have a 1.9% chance that it’ll be because of my liver. As a reference point, in 2012, liver transplant recipients had an average MELD score of 27.

Despite a high MELD score and a clinical need for liver transplant, not every patient can be a candidate. Contraindications such as severe cardiopulmonary disease, advanced age, a lack of socioeconomic support, active infection, and active substance or alcohol abuse preclude a patient from being a listed liver transplant candidate. I’ve even recently heard of a patient being kept off a different transplant list for taking too many prescribed opioids.

Based on UNOS data from August 28th, 2015, 15,159 patients in the United States were active candidates for liver transplants. Conversely, in 2012 (the most recent data available), 6,256 liver transplants were performed. In 2012,  2,187 patients died while on the waiting list, and 815 were taken off the wait list because they became too sick to successfully undergo transplantation. Of the liver transplants performed in 2012, 10% of patients, approximately 626 people, had undergone previous transplant.

Looking objectively at 2012 numbers, 10% of liver transplant patients had a previous transplant, so about 626 people had a yet another second chance at life from a second (or third or even fourth) liver transplant while 3,002 people did not.

That was just 2012. With 72% of liver transplant patients surviving at 5 years, imagine the number of people who died wanting for the organ that your patient received! – your rude, mean, verbally abusive, otherwise horrible patient – received…and has subsequently abused with alcohol and drugs once again.

Donated or native liver, liver patients are notoriously difficult.

Because the liver is involved in so many vital bodily functions, when it fails, seemingly everything is wrong. Backups in the vascular system lead to varices, enlarged veins that can pop at any given minute. Backups in the detoxification system lead to an increase of ammonia, a usually harmless substance that is toxic to the brain in high levels. Severe liver failure patients are near impossible to reason with because they lack any reason from ammonia overload.  A lack of clotting factors puts these patients at a high risk of bleeding. Bilirubin excess gives these patients a yellowish hue called jaundice. Medications do not break down predictably. Liver failure is extremely frustrating.

Most frustrating of all is on top of all their physiologic issues, liver patients tend to be emotionally draining. They typically have no coping skills for the stress of hospitalization and chronic disease because they used alcohol and drugs as their main coping mechanism for years.

Though candidates are required to undergo drug and alcohol abuse treatment prior to transplantation, many will fall back into detrimental habits, subjecting their new liver to the very substances that killed their native organ.

In my own experience, it’s an all too common story.

With 72% of liver transplant patients surviving at 5 years, 2,187 patients dying while on the waiting list in a given year, and 815 taken off the wait list in a given year, imagine the number of people who died wanting for the organ that your patient received!…and abused into failure once again.

Liver transplant failure after resuming detrimental habits so common most health care workers I know don’t even blink. Some roll their eyes, sure, but almost no one is shocked.

Sometimes it takes years. Sometimes it takes a tragedy to give up sobriety and health. Sometimes it takes months. Sometimes it’s the stress of a new regimented medication schedule. Sometimes it takes weeks. Sometimes it’s the stress of hospitalization and subsequent rehabilitation. Sometimes it apparently takes mere hours. I heard a story of a new liver transplant patient was that given alcohol in the hospital after transplantation by his enabling family.

You look at your patient. Your patient who is on your every last nerve. Your patient who is calling you on the call light for crackers when someone else is coding and demands you see come in immediately (true story). Your patient who feels entitled to an organ. Your patient who shot up with heroin and their donated liver now has Hep C. Your patient who drank again. Your patient who does not appreciate their second chance at life.

And it’s almost impossible not to become angry, biased, bitter, and outraged.

You cannot help but think of every other patient you’ve seen. Your patient who thanked you for everything. Your patient who never wanted to call you and “bother” you. Your patient who got dealt a bad hand in life and has a rare, genetic disease. Your patient who waited with such sincere hope while on the transplant list. Your patient who got an infection and had to be taken off the transplant list. Your patient who never got the gift of a donated liver. You patient who died, their family that mourned them, and your own tears in the safety of your home.

That frustration is why so many healthcare providers I know refuse to donate their liver. Some will even will donate everything else but this organ. Time and time again, we see the precious gift of a donated liver, a liver that could have gone to many other and possibly more worthy recipients, wasted, abused, and mistreated by the people who did receive them.

Though I’ve seen donated livers malfunction again and again due to detrimental behaviors, seeing yet another wasted, abused, mistreated donated liver is where I learned true gift.

I was working in the ER a couple months ago when our pager went off. An ambulance sent us an alert that they were bringing in a middle-aged woman who had a seizure. I prepared the room, and soon Emergency Medical Services personnel brought me a lithe woman whose salt-and-peppered brown hair was stained with bright red blood.

Her name was Edith. Thick white gauze covered her forehead. EMS gave me her history and told me her husband was on the way. I reviewed her allergies and saw a previous anti-rejection medication for her liver transplant had given her a seizure.

With triage complete, I assessed her while staring an IV. As I drew a rainbow of lab work, I began my typical screening questions. Anyone mistreating you at home? Are you wanting to hurt yourself or other people? Any smoking? Any drugs? Any alcohol? She answered “no” on all counts.

Her husband arrived and was obviously worried. The ER resident came in. He told us in great detail how she suddenly had a seizure while they were eating breakfast and hit her head on a chair. She ordered labs, fluids, and a CT scan of her head. We carefully unwrapped her bandana of gauze and found a deep, 3-inch cut, still oozing blood. The resident wrapped her head. I hung fluids and left the room.

As Edith went for her scan, lab work results trickled in. Her blood counts were low but stable. Her sodium was within normal ranges while her magnesium was low. Her liver function panel was worse than a month ago. “Did you test for an alcohol level?” the attending physician asked the resident.

She shook her head. “She said she doesn’t drink.”

He silently perused the panel of lab results. “Ask her about it again.”

The resident went back into Edith’s room as I went to another patient’s room. Minutes later, I found Edith’s husband pacing nervously by the bathroom. “Can I help you with something?” I asked.

“Have any coffee?”

I retrieved a cup of lukewarm, burnt hospital coffee for him. “It’s not the best, but it does the trick,” I joked. He mumbled his thanks.

I almost left, but something in his restless shuffle prompted me to stay. “Something wrong?” I asked.

“I just can’t believe it,” he said incredulously. I just can’t believe she’s been drinking again. I mean, I keep a little alcohol around the house for bloodies, but I can’t believe it. She’s worked so hard to be clean for this liver. I just can’t believe it. She’s volunteered at transplant events, done walks. It just…I know she’s been under a lot of stress lately, but I never thought she’d drink. I just…I just can’t believe it!”

“I’m so sorry,” I said. She’s been drinking? I thought. I guess that makes sense. Must have been a lot for her to withdraw enough to have a seizure. Maybe that’s how she had a seizure on the other medication too. I didn’t think that was a side effect of it. Huh.  “Let me know if you need a refill.” I offered him with a small smile, knowing fully I could offer little else.

I found an empty computer seat and logged into the electronic medical record. I charted and perused Edith’s chart. Her head CT came back negative. But her alcohol level came back positive. Minimal, but positive.

Sure enough, Edith was drinking again.

The resident put in a couple orders for medications, including a local anesthetic to suture her wound. I went to Edith’s room and delivered the medications. I helped her up to go to the bathroom. As we walked, I met her eyes and asked, “When’s the last time you drank, Edith?”

She looked down, clearly ashamed. “I don’t remember. A couple days ago.” Right in the window for withdrawal, I thought. We walked back to her room in silence, her husband quietly walking behind us.

Facial trauma came to suture her head. The transplant team called to admit her. Her husband left his contact information and went home. I called the floor to give report.

“Hello,” the floor nurse said after, interrupting the torturous hold music.

“Hi, it’s Marissa in the ER. I have a liver transplant patient for you.”

“Go ahead,” he said, monotone.

“She was at home this morning with her husband when she had a 30-second witnessed seizure and hit her head on a chair. Facial trauma is suturing her head lac right now. Of note, she admitted to drinking alcohol a couple days ago and her serum alcohol was minimal.”

“Typical,” he scoffed.

“I’ve worked with liver transplant too, and she’s actually not that bad,” I said defensively. “She’s had her liver for over 8 years now and has been under a lot of stress at home.”

“Whatever. Let me guess, her LFTs are up?” he sneered.

“Yeah, they’re a bit elevated compared to her blood work at clinic a month ago.”

He snorted. “Figured.”

I gritted my teeth in frustration.”Moving on…” I detailed the tests, vitals signs, procedures, history, and other relevant information on Edith to the floor nurse. His tone remained demeaning, even when discussing objective clinical information.

My blood boiled when I was finally able to hand up the phone. Who does he think he is? Where does he get off? How does he get to think he’s so much better than sweet, quiet, little Edith? What a judgmental jerkface!

I took a breath and took a proverbial step back. I’ve done the same thing. I do the same thing. I’d be lying if I said I won’t do the same in the future. I’ve been angry, biased, bitter, and outraged too, especially when it comes to liver transplants.

Time and time again, we healthcare providers see the precious gift of a donated liver wasted, abused, and mistreated. Edith was no exception.

Statistically and objectively she was yet another liver transplant who has abused her donated liver.

But for the first time, I was not angry. I was not biased. I was not bitter. I was not outraged.

For the first time, I saw liver transplant patient who had abused her gift of a second chance at life, but despite her mistakes, I still saw her as worthy of receiving that gift.

Yet, how was Edith any different from the other liver transplants I’d seen?

Was it her detrimental behavior of choice? No. Alcohol is an all-too-common, very-unoriginal detrimental behavior of choice.

Was it her social standing? No. She seemed to be middle class, and I’d taken care of liver transplants from all economic standings.

Was it because she was a woman? No. I’ve seen a fair number of other female liver transplants.

Was it because of her husband? No. I’d seen other family members of other liver transplants, and most cared just as much if not more than her husband did.

Then what was it?

I racked my brain for weeks, and I came to this conclusion: She was no different. She was no more worthy, no less worthy, of a transplant that anyone else.

Then it hit me: A donated organ is a gift.

For a gift to be a gift, it must be freely given without expectation of return.

A gift must be given for the sake of the recipient, not the benefit of the giver. It must not be given with out own gain in mind. It must be given without the expectation of anything, anything and everything, in return.

But we live in a society with a perpetual Santa Claus mentality where we think we need to earn or repay our gifts.

As children, we learned if we were good, if we behaved well, if we were worthy, we would receive a good gift. If we were bad, if we behaved poorly, if we were unworthy, we would receive a bad gift.

As an adult, our world and interactions reinforce this idea. We subconsciously know gifts need to be repaid or earned. Gifts are used in negotiations, a way to smooth over an argument, a bribe, a tool more than an actual gift. That’s why terms like gift economy exist and have their own pages on Wikipedia.

But true gift is costs nothing. True gift is freely given. True gift seeks not the gain of the giver but the gain of the recipient. True gift is given without expectation of return.

True gift is baffling.

As I reflected on Edith and her liver, I realized my concept of gift was tainted by some of my experiences with gifts. So many times I’ve been given gifts with expectation of return, and I’ve given gifts with expectation of gain.

For example, an ex-boyfriend once hid a little present in my suitcase when I went home for a weekend. On the exterior, it looked sweet, thoughtful, and caring. Yet, my stomach churned as I saw it. I became nauseous as I saw this tiny bear that said “I miss you.” I knew he gave the gift with the expectation that I’d call or text to say I missed him. That gift was a tool for manipulation, not an actual gift.  We broke up that week, and that tainted idea of gift has stuck with me.

So much of what we are given is given with expectations of return for the gain of the giver. When a gift fails to illicit the response we want, we blame the recipient and we say that value of the gift was wasted.

But since when is a gift’s value dependent on the character of the recipient? Never. The inverse is true. Gifts are freely given, not earned, so a gift’s value is always dependent on the giver, not the receiver.

Look at the Good Lord above. Look at all the gifts He gives. Yet, so many of His gifts are rejected. Does this decrease the value and worth of God Himself? No. Can we earn gifts He gives us? No. 

As Pope Benedict XVI wrote,

“We cannot—to use the classical expression—”merit” Heaven through our works. Heaven is always more than we could merit, just as being loved is never something “merited,” but always a gift.”

– Pope Benedict XVI, Spe Salvi (In Hope We Are Saved), 35

In the same sense, we cannot earn salvation, mercy, forgiveness, the love of God, even life itself. So much is abundantly, freely, and lovingly given to us from Our Heavenly Father that we lose sight of what gifts we have been given.

Gift is freely given.

We had no merit in being born. Life was given to us.

We have no merit in being loved by God. His unconditional love is constantly given to us, even when we reject Him.

We have no merit in asking for divine forgiveness and mercy. Yet, when we are forgiven, when we receive mercy, God does not hang his favors over our head and demand perfection. Instead, He allows us to make mistakes over and over again (despite our promises to change), and come back to Him in every moment of every day. His forgiveness and mercy are given.

We have absolutely no merit in asking for heaven. Heaven is for perfect, sinless, holy beings. Last time I checked, that’s not me. Salvation is given.

The fact that Jesus desires me eternally in heaven with Him, is willing to cleanse me of all imperfections, is willing to die Himself so I might live is just baffling.

Really, God. I’m not all that great. If I were you, I’d let me go and save myself. But that’s why You’re God, and I’m not. Thanks for that!

So, if God is willing to give me all these things as a gift, where do I get off thinking someone else is unworthy of His gifts?

Answer is: I’ve been biased. I’ve been unfair. I’ve been bitter. I’ve been unjust.

Me judging an relapsed alcoholic liver transplant is not even factually accurate. Looking at a meta-analysis on alcohol abuse and liver transplants, only 15% of chronic alcoholics will develop alcoholic liver disease. Any patient to qualify to be on the transplant waiting list must proved their abstinence from alcohols and drugs as well as a whole other list of criteria. In the alcoholic liver disease transplants, they drink alcohol at 6 and 12-months at the same rate as non-alcoholic related liver transplants. Liver transplants dysfunction at the same rate as non-alcoholic liver transplants. If an alcoholic liver transplant patient relapses, it’s most likely to happen before 2 years with the transplant. And if the transplant does dysfunction (as all transplants eventually do), it’s more likely to be from another cause than alcoholic liver disease.

Regardless of cause, liver transplants fail at a similar rate, regardless of the detrimental behaviors of the recipient. The gift of a donated organ can be ruined by detrimental behaviors, yes, but the likelihood is low. It’s more of a bias than scientific fact that alcoholics and drug addicts ruin transplanted livers because of their behavior. Either way, the gift of life, the gift of a transplanted organ is going to eventually fail.

While working on that intermediate care unit, I filled out Power of Attorney paperwork to name someone to make medical decisions for me, mark all the procedures medical professional could and could not perform on me, and finally, answer if I would be willing to be an organ donor.

I paused as I read the options for organ donor. I could have, like my co-worker, said “everything, except my liver.”  But something felt wrong about marking that.  I ended up marking “I wish to donate any needed organ or part.”

I didn’t know the research at the time, but I knew potentially holding back my liver felt wrong. To give all but one part of myself seemed incomplete and insincere.

True gift is a gift of one’s whole self, good and bad, strengths and weakness, ups and downs, everything. God holds nothing back from us and serves as the perfect model of how we must give ourselves in love to one another.

I used to hope that if I were to become an organ donor that a non-alcoholic patient would get my liver, but my hope has changed as of late. My liver can go to anyone who needs it. My neighbor is every person loved by God and therefore everyone. He loves all us poor sinners, so who am I to say one person a “more worthy” recipient than someone else? I simply cannot. And I am not jealous of the UNOS’s difficult task in rationing organs as fairly as possible.

Organ donation has always been considered a gift in the Catholic Church. The Catechism of the Catholic Church states that it is “a noble and meritorious act…an expression of generous solidarity (CCC 2296).” Pope Francis referred to it as “a testimony of love for our neighbor.”

The liver is an inherently charitable organ, and I think the ultimate testimony of love for our neighbor is a donated liver to a recipient who has abused their native liver. What better example in the world of God’s unconditional love, unconditional mercy, unconditional gift of second chances then giving someone supposedly unworthy another chance at the gift of life. After all, that’s what He’s freely given each one of us.

*Name change for patient privacy. See Policies and Procedures for further information.

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