Transplant recipient still struggles to cope after brother's death

Second of two parts

CASTLE ROCK, Colo. — There is a movie that plays over and over in Chad Arnold's mind. It starts with the urgent call from down the hall: “Code blue. Room 601.” Then Ryan's wife running into his own hospital room. Her words to his sister: “I need you.” Chad, still a jumble of IVs after the liver transplant, wresting himself from his bed and making his way just a few doors down to the room of his brother, his savior.

From the hallway he watched it all. And so the horror is forever ingrained in his memory.

What makes it worse is that they'd both made it out of surgery just fine, that until that moment the entire process had been a celebration of life not something to fear, really, but something with a happy ending.

Everything had moved quickly after Ryan received the phone call at their July family reunion confirming he was a match for the liver transplant surgery needed to save Chad's life. A week and a half later, the family was back in Colorado preparing for surgery. The night before, they read Scripture, shared communion, and prepared to keep friends and family informed with updates on a website called CaringBridge.

“We look forward to delivering a positive report,” the family posted the night of July 28.

The next morning at the University of Colorado Hospital, the brothers swapped jokes. But just before Ryan was led into surgery, Chad walked into his brother's pre-op room and wrapped his arms around him.

“I owe you my life,” he whispered to Ryan, who tried, as always, to reassure. “Piece of cake,” he said.

By 5 p.m., it was done. Two-thirds of Ryan's liver was removed and placed into Chad, whose own diseased organ was taken out in chunks. Almost immediately, Chad's jaundiced skin returned to its natural color; the potbelly caused by his swollen liver was gone.

Chad felt the best he had in years. Through family members, he sent messages to Ryan. “Tell him I'm feeling good. Tell him I love him.”

It was as if they'd switched places. While Chad was up and walking, Ryan was having a harder time. The family kept posting updates:

On Friday, July 30, at 11:59 a.m.: “It's taken awhile for it all to sink in, Chad is functioning with Ryan's liver ... almost doesn't seem real.”

On Friday, July 30, at 11:45 p.m.: “Chad went on two walks today ... Ryan has been pretty groggy today, which is normal.”

On Saturday, July 31, at 3:44 p.m.: “We have been told from the beginning that this is perhaps the most difficult day, especially for the donor. ... Things are improving this afternoon, but again last night, Ryan did not sleep well and has been in quite a bit of pain.”

On Sunday, Aug. 1, at 10:18 a.m.: “Unfortunately things took a turn for the worse last night. Ryan went code blue and was resuscitated. He is now in critical condition. We ask that you stand in faith and fight with us. ... Death can't have him.”

On Monday, Aug. 2, at 11:04 p.m.: “Ryan went to be with Jesus this afternoon.”

“This is how we know what love is: Jesus Christ laid down his life for us. And we ought to lay down our lives for our brothers.”

Chad's journal entry called, “1 John 3:16.”

Their father chose to deliver the news, after tests showed that Ryan's brain was no longer functioning. He entered the room where Chad slept and grabbed his toes to wake him, the way he did when Chad was a boy. And then he said, ever so gently: “Ryan's brain is dead, but we still serve a good God.”

When Chad went to say goodbye, he promised Ryan he would go on, that he would live fully, that he would “live for both of us.” His entire existence became about healing, the healing not just of his body but of his heart, too.

All of the rituals of grieving that are meant to help find closure the funeral and the burial, one final goodbye Chad got none of that. He was discharged just before Ryan's service but wasn't well enough to travel to South Dakota to attend.

Then complications sent him right back to the hospital. For several weeks, he was just two doors down from Ryan's old room, walking past it as part of an exercise regimen meant to help him “heal.”

That word itself seemed a joke. All those nights in the hospital, Chad stayed up for hours with his sister and his cousin talking about Ryan and how to go on. What is my life really about now? he asked himself. Then one day a visiting co-worker said something that stuck with Chad: Everything that Chad now expressed was prompting this man to reassess his own life. Perhaps, his friend suggested, the pain that had so altered Chad could somehow help others.

On Aug. 18, nine days after Ryan was laid to rest, Chad wrote his first online journal entries while still in the hospital. He began with a few Bible citations.

The first entry written entirely in his own hand was tagged with the word “guilt.”

“Well I thought I'd just start off with addressing the 300-pound gorilla in the room. It's the thing most people are concerned about with me. ... So Chad, how can you drag yourself out from the weight of self-condemnation? How can you ever live a normal life again?”

And yet with each new meditation, Chad fought to stave off that demon. “Why Ryan, God? Why not me? What about all the prayers?” he wrote. “If you think I haven't asked these questions you're wrong. ... If you think I haven't yelled at God I'm sorry and you're wrong.”

He kept wondering: What if he'd just waited for a cadaver donor? Then a hospital worker told him his was one of the most diseased livers she'd seen and he likely had only months to live. That helped, some.

He regretted his father having to come out of retirement to keep open his orthodontics practice, which Ryan had been taking over.

When Chad was released the second time from the hospital, he was so happy to be home with his wife and two sons again, to hold his boys tightly and kiss them goodnight. Then the realization hit that Ryan, and his wife and three boys, would no longer have those moments.

He tried to focus on healing his body. Mornings on the treadmill, twice-weekly checkups, lab work. He eased back into his work coordinating with churches to assist children in poverty, and he approached his job with new vigor and perspective; he now knew what it meant to suffer.

He also set new priorities for his life, guided by the things that were once so important to Ryan: Faith, family, friendship. He vowed to spend more time with his kids, be more patient and loving to his wife, visit his parents more often, lean on his friends more.

And he documented nearly every step. For Chad, writing was not only a way to remember Ryan, it was cathartic. It seemed to be helping others, too. Friends, family even strangers began following Chad's journal, some posting comments about how they had been moved to live differently.

When he struggled, Chad's readers urged him on.

“Chad, you have come too far to give up now! ... You are making a mark that will never be erased,” one wrote.

“I wonder if you realize how inspirational your blogs are,” wrote another, “or how heroic YOU are.”

“Today there's a picnic put on by the hospital to honor liver donors and recipients. I was asked to go but there was no way. Today, I don't want to remember I'm a liver recipient. ... Today, I don't want to be a part of this story.”

Journal entry called, “My Psalm.”

A few weeks after Ryan's death, Chad sat one morning in his living room with his sister, Janelle, as their children played. It was, health-wise, a good day. Emotionally it was quite different.

“Today's a hard day for me.”

“Reality?” Janelle asked softly, and tears formed in Chad's eyes.

“I think when I start to feel better, they're harder days. For some reason I like to hold onto the pain. When I don't feel the pain, there's a tinge of ...”

He stopped, and then: “I say I don't feel guilty, and I don't spend a lot of time on it, but there is that tinge that you start to feel a little bit. And then, later on, I'll be fine.”

Summer has turned to fall, and still it's like that. A tinge one moment, “fine” the next.

Ryan's autopsy report called his death natural due to a lack of oxygen to the brain following cardiac arrest. It said “poorly delineated” complications of the surgery may have put undue stress on the heart, and it found that Ryan had a slightly enlarged heart, which may have made him susceptible to irregular rhythms. Both the hospital and the medical examiner agreed that until the cardiac arrest, Ryan seemed to be stable.

The University of Colorado Hospital, which had temporarily halted live-donor liver transplants, has since resumed the program. Reviews found no deficiencies in the program itself, but personnel will now continuously monitor donors post-surgery with machines that sound an alarm if blood oxygen levels drop and a patient stops breathing. In a statement, the hospital said: “Ryan's passing will not be in vain.”

Chad still makes the same pledge to himself, despite ongoing complications that recently brought devastating news:

He may not be able to keep Ryan's liver.

Recently, due to a buildup of fluids that indicates the transplanted liver isn't yet functioning properly, Chad was placed on the waiting list for a cadaver liver. He is taking things day by day, still hoping that, in time, Ryan's liver will work. But if a cadaver liver becomes available, Chad has decided to undergo another transplant.

In that, he feels he has no choice. The one thing he can control: Chad refuses to ever again accept a live donation; the responsibility is just too great.

“I'm not going to put that on anybody else,” he says. “If I don't make it waiting for a cadaver, I'd rather have that than to have anything else.”

The strong faith that always helped his family conquer adversity is helping them all endure, still. Chad may ask “why” and “how,” but he knows those questions don't really have answers. Faith, he wrote in a blog passage, is “the thing you cling to when you're taking your last breath in a freezing river whose current is too strong. Well, the current is too strong for me right now, and so I'm clinging.”

And so his journey goes on, a process that involves hard work, more prayers for healing and days filled with memories, some happy, some haunting.

Chad can't help feeling as though he'll have failed, somehow, if he has to accept another liver. Having that piece of Ryan forever with him had helped ease some of the pain of his brother's loss. As he wrote in a blog entry last week: “I am faced with the cold hard truth that I may not get to keep what has been the only redeeming thing in all of this.”

Then again, he knows Ryan wouldn't want him to feel that way. He knows what his little brother would have said about the possibility of a second transplant.

“At the end of the day, if I have to live, I have to live,” Chad says. “Ryan would tell me to do that.”

Weighing risks, benefits of live-donor transplant

<p>Live-donor liver transplantation is a lifesaving option for many suffering from end-stage liver disease but also a controversial procedure that raises questions about when it's appropriate to put a healthy person at risk to save another.</p>

<p>The procedure, in which a segment of the liver is taken from a healthy donor and transplanted into the ailing recipient, is possible because of the liver's ability to regenerate. In weeks, both the old liver and the transplanted liver begin to grow back to a normal size, providing long-term function for both donor and patient.</p>

<p>The first such successful transplantations, beginning in 1989, involved taking liver grafts from adult donors for transplantation into sick children, a procedure with fewer risks to the donor because only about 25 percent of the liver is needed. As pediatric living-donor liver transplantation grew more widely accepted, the technique was modified for use in adult patients, with up to 60 percent of the donor's liver taken.</p>

<p>Through 1996, just six adult-to-adult live-donor liver transplants had been performed in the United States, according to the United Network for Organ Sharing, which manages the nation's organ transplant system. Five years later, that number had grown to 412. Today, more than 2,800 adult-to-adult procedures have been performed in the United States.</p>

<p>In all of those, UNOS reports, four donors have died due to complications of the surgery or immediately following surgery. </p>

<p>Though rare, these deaths raise the most serious question surrounding live-donor liver transplants: When is it OK to operate on an otherwise healthy person?</p>

<p>The death of donor Mike Hurewitz at New York's Mount Sinai Hospital in 2002 brought widespread scrutiny of adult live-donor liver transplants, resulting in risk-benefit studies and an examination of screening procedures for donors. Hurewitz developed a bacterial stomach infection and died three days after donating part of his liver to his brother. Reviews blamed poor post-surgical care, and the state temporarily halted the hospital's live donation program until corrective measures were put in place.</p>

<p>The other donor deaths were: in 1999 at the University of North Carolina at Chapel Hill hospital, where the donor suffered a series of complications, including kidney failure, pancreatitis, a bile leak and infection; this past May at the Lahey Clinic in Massachusetts, where the donor died during surgery after a vein was detached from the vena cava, causing an uncontrollable hemorrhage; and in August at the University of Colorado hospital, where the donor suffered cardiac arrest, possibly due to a combination of surgical stress and other factors.</p>

<p>UNOS provides transplant centers with guidelines to ensure donors are appropriately evaluated. Potential donors undergo a thorough medical and mental examination before signing a written consent agreement, and they must have an independent advocate to represent their interests alone.</p>

<p>Still, there are no standardized procedures, and actual tests to ensure the donor's mental and physical health may vary among transplant centers, said Dr. Connie Davis, chair of the living donor committee for UNOS who stressed that, ultimately, “Every donor, heaven forbid, they have the right to say no. They don't have to do this.”</p>

<p>Katrina Bramstedt, a transplant ethicist who also serves as a donor advocate, said that while the ethical questions surrounding living donation are valid, risk-benefit analyses show that the procedure should continue. </p>

<p>“Yes, occasionally something goes wrong, but that's going to happen in any surgical procedure,” she said. “Generally, the donors are well-informed and very well-screened and they're healthy and ready to go.”</p>

<p>After Hurewitz's death, the National Institutes of Health implemented a seven-year study of adult living-donor liver transplants to weigh risks to donors and benefits to recipients. </p>

<p>Study results found a 20 percent to 25 percent chance of donors experiencing some type of complication, the most common being bile leaks, collection of fluid around the lung and infections.

Most were considered minor, said Dr. Carl Berg, the director of hepatology at the University of Virginia, who served as a co-chair of the federal research team. The research found a 50 percent reduction in deaths among the sick patients receiving the live-donor livers, Berg said. Without the live-donor livers, those patients most likely would have remained on the cadaver transplant list some growing more ill as they awaited a transplant, some dying before a transplant ever happened.</p>

<p>The back-to-back deaths in Colorado and Massachusetts this year shook the transplant community and prompted centers to re-examine their programs, Berg said. </p>

<p>However, he added that so long as the benefits of the surgery outweigh the risks of death or complication and until more Americans decide to become organ donors at death adult living-donor liver transplants will continue.</p>

<p>“Is it safe?” he asked. “I would give half my liver to my brother in an instant, and I know as much as could be known about the risks. I would still gladly do that as opposed to having him wait for a deceased donor because I know the benefit is there, and I believe (for donors) that the quantified risk is small.”</p>