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Brother's transplant gift carries unbearable cost

/ Source: The Associated Press

He knows all about the stages of grief. Denial and isolation top the list. But how can he possibly deny all that's happened? In the mirror, he sees the 14-inch scar across his abdomen. Beneath the scar, lodged below his heart, is a piece of Ryan, his brother.

Journal entry, Aug. 22: "I missed you today Ryan. It hurt so much I felt like my heart had blisters on it. God, why do we need death to reawaken what we should already know?"

The grief comes in waves, sometimes gently washing over him, sometimes crashing down hard and threatening to drown him. When the waves come, and they always do, he may cry or shut himself up in a room and talk to Ryan alone. Or he finds a quiet place and sits down with his laptop. And then he chronicles his agony and shares it with the world, processing his pain in a way that is opposite of isolation, with words that ache as his soul aches.

He writes of guilt and self-pity. Of feeling wrecked and undeserving. Of a faith now tested. They are raw and withering, these painfully candid expressions of a man wrestling with so much more than the sorrow that comes with losing a loved one.

And, of course, he writes of Ryan. Ryan, who was so strong in both mind and body, so filled with vitality and unwavering optimism and faith.

Chad Arnold had always been the sick one, but now Ryan is gone and he's still here, left with this incredible gift of life that is also such an incredible burden.

"I'm not deluded," he types one day. "I know my role in bringing us to this point. I was the one with liver disease. I can't change that."

He asks the many questions that accompany all of those "normal" stages of grief: Why did it happen? How do I go on? But for Chad, there are so many others. Why him and not me? How do I make my life count while honoring him? Was I worth it? ... Am I worth it?

For Chad, it is as simple and as awful as this: His brother died so he could live. There is no denying that. There is only the struggle to accept it, and go on. And the journey to learn how.

'This is a Ryan story, not a Chad story'

"Suffering is like a pile of rocks. You can choose to carry the load, throw them at someone, just let it lay there, or you can build an altar."

— Journal entry called, "Stepping Stones."

In the telling of this, there are things he is wary of — focusing too much on his own hurt, for one. He avoids getting bogged down in what he considers superfluous details: his sister, Janelle, mentioning that Chad was the homecoming king in high school, the brother who once made them all laugh by imitating a monkey. He's uncomfortable with that kind of attention now. "This is a Ryan story," he'll say. "Not a Chad story."

And so, at times, he seems to diminish his own feelings — his own existence, even. It is as if none of it could ever compare to what Ryan did for him. He'll say that Rod, his oldest brother, got the good looks. And Ryan got the brains. "I got whatever was left over." He pauses. "Whatever that was. Maybe the mouth. The words."

Now he uses those to talk about Ryan, to remember, to try to process it all, somehow, and then maybe one day to heal.

Yet, it isn't just a Ryan story. It is one of both sacrifice and survival, not only of one brother's gift but of the other's receiving of it. It is theirs, together — as this at once remarkable and terrible experience was. It wasn't going to happen any other way; Ryan saw to that the moment Chad told the family he'd taken a turn for the worse.

It was February, Chad was 38 years old and in liver failure — and Ryan, his younger brother, was determined to find a way to help.

The diagnosis had come years earlier. At first, Chad thought he had some sort of skin disease because he itched all the time. Then his eyes and skin began to turn yellow. At 25, he went for a checkup and knew something was terribly wrong when the doctor called him back in and asked: "Do you want your wife here with you?"

He had primary sclerosing cholangitis, PSC, which targets the bile ducts inside and outside of the liver. Bile helps break down the fat in food. It's made in the liver but then carried through those ducts to the gallbladder and small intestine. In PSC, the bile ducts grow so inflamed and scarred that they become blocked, causing bile to build up in the liver and eventually seep into the bloodstream, which causes skin to itch. As cirrhosis advances, the abdomen and feet may swell, and liver failure sets in.

The cause of PSC is unknown. What is known: There is no cure.

It was a terrifying prognosis for a newly married man in the prime of his life. But PSC is a slow-developing disease and individuals' symptoms can vary greatly. Some live for years with few complications.

Chad watched his diet. Swam laps over lunch. Went in for checkups and lived life. He traveled the world leading teens on church mission trips and built a successful career doing marketing work for Christian organizations. He'd lose weight sometimes or feel fatigued, but somehow he seemed to maintain and go on.

"You're the most healthy sick person we've seen," doctors told him.

In early 2009, he moved his wife and two young children to Castle Rock, Colo., and took a job at Compassion International, an organization that helps poor children around the world. The fortuitous move came just in time: He lived near the University of Colorado Hospital, where the world's first liver transplant was performed in 1963.

'Just get back and get to your doctor'

In February, everything changed. Chad was in El Salvador on a business trip, about to fly home, when his left leg swelled up so much that he couldn't see his ankle. He thought he might have a blood clot, and knew he shouldn't be flying if so. He phoned Ryan, who had studied medicine and become, alongside their father, an orthodontist back in their hometown of Watertown, S.D. "Just get back and get to your doctor," his brother said. "It's got to be related to your liver."

Things went downhill quickly after that. By the time Chad was back in Colorado, the swelling had moved into his stomach. His abdomen was so distended he looked pregnant.

A transplant became his only chance for survival.

Chad hoped to wait for a cadaver transplant. But at any given time, close to 16,000 patients nationwide await a liver transplant, while only about 4,500 cadaver livers become available each year.

His best option, instead, was a living-donor transplant, a rare procedure in which a segment of the liver is taken from a healthy donor and transplanted into the ailing recipient. In just weeks, both the old liver and the transplanted liver regenerate and grow back to a normal size, providing long-term, regular function for both donor and patient.

In the more than 4,100 living-donor liver transplants conducted in the United States since 1989, just three donors had died from complications related to the surgery, according to the United Network for Organ Sharing, which manages the nation's organ transplant system. At the University of Colorado Hospital, 141 such transplants had been performed with no fatalities.

Chad's doctors said he'd need to find someone between 18 and 55 years old, a person in excellent medical and psychological health, whose blood type was compatible, though not necessarily an exact match.

When Chad relayed this to family members across the country, volunteers came flooding in. Cousins. In-laws. Friends. And all three of his siblings: Rod, 42; Janelle, 39; and Ryan, 34. Chad explained that the hospital wanted him to nominate one person, who would then take a blood test to see if he or she was a potential match. If so, another round of tests would follow.

But Ryan, the baby brother with the first-born instincts, didn't want to wait. Back in Watertown, he scheduled his own blood test. And when he learned his blood type was, in fact, compatible, his message to Chad — to everyone — was clear. The transplant would happen. Chad would get better. And Ryan was going to be the donor, period. Even when Janelle checked her own medical records and learned she, too, had the right blood type, Ryan just waved her off.

"Nah," he said. "We're not going to need you."

It was quintessential Ryan.

Leaning on family and faith

"'I think we can do this.' Half the time Ryan said this he'd be buried in mud or snow or water up to his eyeballs in his Wrangler. The other times were real life issues that challenged him or a friend to their core. Either way, he always found a way through it. By the way, it was never an option to go 'around.' Why do that and miss all the fun?"

— Chad's journal entry called, "Axioms For An Idiot. (aka me)"

The memories sometimes come in a rush. Ryan and Chad as teenagers in Watertown driving to basketball practice at 6 in the morning. In wintertime the snow came down so thick and hard, Ryan would peer out the passenger's window, while Chad stared out the driver's side, just to find the stripe in the road. "Come my way," Ryan would say.

The summers back home from college, spent together installing boat lifts on Lake Kampeska.

The guys' fishing trip to Alaska, when a grizzly bear suddenly appeared and Ryan strung pieces of salmon on his line and then cast them out at the bear just for fun. "For once, can you just go easy?" Chad had chastised his little brother, as he, Rod and their father stared in wonder.

It was just so Ryan. Fearless.

Where Chad was the philosophical one who liked poetry, Ryan was analytical and saw things in black and white. He seemed to know from an early age the things he wanted out of life, and he went out and got them. Chad likes to say: "He lived life ahead."

Ryan was the buddy friends called for a cup of coffee and a heavy talk. To his nieces and nephews — and his own three little boys, Graham, Owen and Oliver — he wasn't just the guy who played superhero; he was Superman and Aquaman rolled into one. He loved all things fast and outdoors: snowmobiling, four-wheeling, pheasant hunting. But he especially loved the water. He lived on the shores of Lake Kampeska, and after work he'd often grab his kids and his gear and head to Janelle's house in his boat to pick her kids up and take them all fishing.

He was a man of many passions, but Shannon, the high school sweetheart who became his wife, was his greatest. Later, when all was said and done, she would write of her husband: "What has really been kind of a comfort to me isn't in trying to see God's hand in this, because I don't yet. It's not even in the memories yet. ... It's the absolute knowing that I know what love is. What it's like to be adored. What it's like to be completely cared for and protected ... "

Ryan, the protector. That may be the most fitting description.

"It was very simple with Ryan," says his brother, Rod. "It was about being there for people. If you were his friend, if you were his brother, it was all in for him."

He was like this because of his unshakable faith, something that had long guided the Arnolds through good times and bad. As children, Rod, Janelle, Chad and Ryan saw their father suffer so much loss — the premature deaths of his father, his brother and a best friend. And still he never stopped believing that God would see him through.

Chad felt the same in the years after his diagnosis: "God's going to get me through this."

Faith gave them all the strength and conviction to face up to hard times.

And so, when his blood work came back, Ryan took it upon himself to call and schedule the next round of tests. In June, he flew to Colorado for a thorough mental and physical examination. Then it was just a matter of waiting for those results to see whether the transplant would go forward.

'I don't want you to do it'

Chad was quickly deteriorating. His liver was growing to try to survive. He was so fatigued he couldn't get out of bed for more than a few hours each day. His jaundiced skin and eyes were stained a sickening shade of honey.

In July, despite his condition, Chad traveled home to South Dakota for an Arnold family tradition: A reunion at the family cabin in the Black Hills. In all, some 60 Arnolds descended on the forest, camping in tents and RVs. Chad spent most of the weekend in bed trying to rest. Then one afternoon, while everyone else was outside, he heard Ryan on the phone in the other room.

"OK," his brother said. "Sounds like we're on."

When Ryan came to him, Chad knew. He tried, for what seemed like the hundredth time, to talk him out of it. He cried. He said he still wanted to wait for a cadaver liver.

"I don't want you to do it," he told his brother, to which Ryan responded: "You'd do it for me, wouldn't you?"

The next night, the family all gathered around a campfire to hear the good news: Ryan was a match, and the surgeons wanted to do the transplant within weeks. As scared as Chad was for his brother, he was excited, too, to finally be healthy again. The family prayed and shared communion. There were tears, but mostly there was so much joy and hope. Ryan exuded such optimism that he gave the others confidence. His utter lack of fear instilled peace in them.

"The one thing you can know about Ryan is he is determined," says Chad. "He did things, and he didn't worry about the consequences. He just did it, because he knew that was the right thing. So, I kind of had to swallow hard — and accept the gift."

The gift. How strange it is, still, to call it that. But at that moment especially, back home in South Dakota, surrounded by prayers and peace and family and Ryan, it was only a beautiful gift.

"You see that hope that you've been seeing in your mind. And you're getting there. You're excited and the family's excited," Chad says.

"And then ... code blue in the middle of the night, and everything changes."

"I miss him so much. Sometimes I can't sleep because my heart feels like it's physically going to rupture inside my chest. And because he risked it all to help save my life, I know I have to deal with things at the very core of me that no one else will ever understand. No one."

— Journal entry called, "Scarred."

Read Part II: Transplant recipient struggles amid brother's loss