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Planning for Death, Searching for Life

The struggle to find an organ donor in Idaho

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In August, Patrick Casey's friends and family received a mass email. In it, Casey included three bullet points: give your liver, give your money, or give your eulogy.

"To have a living chance, I'll need a living donor, and very soon," Casey wrote. "[Or] my liver function drops slowly with an accompanying high degree of suffering that is not relieved by any medications that ends in kicking the bucket. Without a living donor soon it looks like the latter is fairly forthcoming."

He gave his friends two weeks to come forward and help.

The Onset

Twenty years ago, Casey, now 65, worked as a chiropractor in Texas--a career he's followed since 1980. He felt ready for a change, so he got in his pickup and drove north. When he arrived in Boise, he parked his truck and decided he was home. He took some mountain climbing classes and met a woman who opened a small shop called Ceramica. They got married and had a daughter, Clare. She's 17 years old today.

When Clare was born, Casey decided to get life insurance. He had his blood drawn during the physical and a test came back showing elevated levels of enzymes in his liver.

He learned he had primary sclerosing cholangitis (PSC). It's a rare liver disease--affecting about six people per 100,000 in the United States--in which the liver attacks its own cells until it's mostly scar tissue, damaging the bile ducts in the process. Eventually, the liver dies.

"Then, of course, you follow suit," Casey said.

Casey is tall and thin and wears wire-frame glasses. He looks like an everyman, wears long-sleeve button-down shirts from the '90s and sometimes laughs in the middle of his own sentences. He has a one-room office in a historic building in downtown Boise with calming yellow walls. It's scattered with ceramic bowls and frames that Clare painted as a kid. He cycles and plays tennis, but he gave up the mountain climbing.

His marriage didn't last, but his illness did.

Symptoms of PSC typically don't show up until 10 or 15 years after the diagnosis. Casey's symptoms began in 2010. His skin started itching uncontrollably, everywhere. He described it as feeling like shards of glass under his skin. He became jaundiced and suffered chronic weakness. He could feel his brain shutting down.

"I couldn't think straight anymore," Casey said. "If you went two weeks without sleeping, that's how you start thinking. I didn't sleep for almost five weeks."

Casey's health continued to deteriorate until he could no longer practice chiropractics. He got so bad, he took a plane to Chicago and checked into the Northwestern Memorial Hospital's Kovler Organ Transplantation Center. There's no organ transplant center in Idaho.

"When I left three years ago, I was a babbling idiot and most people didn't think they were going to see me again," Casey said.

You Want Him to Be There

Casey first told his daughter about his illness when she was in fifth grade, but it never seemed like a big deal because he didn't act sick. She was a freshman in high school in 2010--living with her mom in Ellensburg, Wash.--when her dad's decline began.

"His symptoms were so bad, he would not let me see him," Clare said. "He tried to keep it from me because he knew it would be hard on me. He tried to keep it on a level where I wouldn't be stressed. I was so unsure of what was going on."

Casey stayed with his sister in Chicago. He was so sick, he could barely stand up. The good news: He was put on the United Network of Organ Sharing list for a deceased donor's liver. The bad news: He realized he would probably never get a deceased donor.

According to the Organ Procurement and Transplantation Network--a nationwide, private nonprofit organization established by Congress in 1984--there are almost 17,000 people waiting for a liver in the United States. As of the end of November, 463 of those were in Illinois.

Maybe that doesn't sound like a huge number, but considering how few livers are available for transplant, finding a donor can seem like winning the lottery. According to the Yes! Idaho Donor Registry, based in Salt Lake City, only 2 percent of deaths have the potential to be organ donors; a deceased donor has to be brain-dead, but their heart and organs must still be pumping.

If the family of the deceased allows, organs can be harvested in that condition, but the organ then has to be transported and transplanted within 24 hours.

"The list has to do with severity," Casey said. "[People with PSC] gradually get sicker and sicker, and our numbers go up slowly. People who have hepatitis or alcohol problems, they jump really bad really quick, so they always hopscotch people with PSC. The system is not fair that way and [the folks running the transplant system] know it. They just don't know what to do."

While in Chicago, Casey's bile ducts were cleared using an endoscope--a procedure he describes as a "roto-rooter" for his liver.

The endoscopy, called an "intervention," extended his health, but every time Casey starts to go downhill again, he has to fly to Chicago to have another intervention. At about $1,000 a plane ticket, he's watched his financial situation worsen, and he's needing the procedure more often. The first intervention helped for a year, then seven months, now it's three months.

Casey spent nine months in Chicago before he felt well enough to return to Boise. He said his clients, friends and tennis partners seemed shocked to see him come back at all.

He embraced his fleeting health and took Clare on an eight-day road trip to Yosemite and Zion national parks in the summer of 2011. On a 90-degree day, the two of them hiked the strenuous trek up Angel's Landing in Zion. They climbed 21 steep switchbacks and reached the last half-mile, where they held onto chains along the trail. They reached the summit: 5,790 feet.

At the top, Clare and her father snacked and took in the view from their pinnacle. The sun brought out the red in the towering rock walls of the canyon. Green trees and shrubs dotted the valley floor, almost 1,500 feet below them.

"We didn't have a deep conversation," Clare said. "But I felt so lucky to be with my dad, who was healthy enough and still here. That's my favorite memory."

Today, Clare is a junior in high school, swamped with AP environmental science, trig, Spanish IV, history, literature and art. She doodles lotus flowers and Hindu gods and has a ring through her nose. She swims and runs track and cross country. She's trying to decide between Humboldt State, Oregon State and Western Washington University. She wants to be a marine biologist.

On top of her normal teenage life, though, she worries about her dad. She wants him around for her graduation, her wedding. She wants him to meet her future husband and her kids.

"It's kind of something you want your dad to be there for," she said.

Likelihood of Living: Nil

Since this summer, Casey has felt his health start slipping again. The itching came back and the sleeping left. By the fall, he went one week where he slept only five hours. His search for a living donor began.

"I stared telling all my friends I need a living donor or I'm going to kick the bucket," Casey said. In order to be considered, Casey's donor would need to share the same blood type and be between 18 and 55 years old. But Casey is 65, as are most of his friends and family.

"People tell me they're interested and ask what's involved. I say, 'Well, you've got to have the same blood type as me, and if you're not the same blood type, you don't have to go another step,'" he said. "Most people don't know their own blood type, so a lot of people are eliminated right there."

Casey said he felt very uncomfortable asking people to donate an organ; it's a huge favor. Blood type and age are only the tip of the iceberg; the donor would have to fly to Chicago and undergo a series of tests with the transplant team to see if his or her liver would be a good match. The donor would then have to fly back to Chicago again for the surgery and stay for two weeks in recovery. The donor would be up and walking within a few days, but it takes the liver three months to fully regenerate--it takes six months to a year to return to a normal level of energy.

Casey's medical insurance would cover the cost of the tests and the $250,000 surgery, but he started asking for money as well to help fund travel expenses and hotel stays. If he does find a donor, he'll have to rent an apartment close to the hospital for three or four months after the surgery and he'll be unable to work. He'd need his friends to fly to Chicago and help take care of him, and he wants to pay for their flights as a thank-you.

Casey said his friends stepped up, doing everything they could to find him a living donor, setting up a social media fundraising campaign and showing support through prayers. Some offered to help take care of him in Chicago.

But after exhausting all his friends and family in the search for a donor, Casey started making end-of-life arrangements. He wrote his will and planned his funeral. He scheduled a meeting with someone who helps handle the dying experience.

"It was getting to the point where the likelihood of finding a living donor was nil. Turning to Facebook, where you're asking complete strangers... not likely," Casey said.

During sleepless nights, he prayed and reviewed his life; during the day, he started reaching out to people who had a significant impact on him.

Do You Remember Me?

"I think he was just trying to say his goodbyes before he died," said Roni Ziemba. Casey and Ziemba dated for four or six months, 25 years ago, when Casey still lived in Texas. They haven't seen each other or spoken since then, but he found her on Facebook.

"We had a few conversations. 'What's your life like, whatcha doing?' stuff like that. And really, we didn't talk about this [liver situation] at all. I didn't even know," Ziemba said.

Ziemba, 55, works as a professional photographer in Tucson, Ariz. She told Casey about how she tries to take an "edgy and progressive" approach to her work.

"I've shot 516 weddings," Ziemba said. "That's 515 too many."

She spends her summers on ranches in Montana photographing cowboys--her favorite subject. Picture her long blonde hair under a cowboy hat, her feet in cowboy boots, sitting on a horse in a field of sepia tones.

One of her clients in Arizona asked her to do a little project involving first responders. She photographed five departments and 14 agencies, including the U.S. Marshals, Border Patrol, SWAT and, most recently, the American Red Cross. She got to ride along in the line of duty. She got a fire pager. The work brought her attention in her field and more front-line assignments.

"So I find myself in dangerous situations, which is just like me," Zeimba said. She's spent more than 2,000 hours on this project, for free. Then, it opened a new door for her.

Her biggest client now is one of the world's leading transplant surgeons. She's photographed several surgeries, including a kidney transplant. She has 108 photographs hanging around Tucson, including two in the Tucson International Airport.

Ziemba has been married twice, but like Casey, she's single these days. She jokes that her 11-year-old Chihuahua, Diego, has stayed with her longer than any other man. She never had children.

She and Casey started talking more often, enjoying the catch-up. Ziemba told Casey about her photography career and Casey told Ziemba about Clare, all the time.

"The more you talk to someone, the more they find out about you," Casey said. He was reluctant to tell her about his condition, but she caught on. "So she started asking me all these questions. I said, 'Well, I'm going to need a liver transplant.'"

"I asked him, 'What's it take to be a donor?' and he was very reluctant to answer," Ziemba said.

Drawing him out some, she said, "Do you remember me? I'm kind of a bulldog about these things." The conversation turned to blood types.

"I said, 'Roni, I really don't want to go here with you on this kind of stuff,'" Casey said, but finally caved and told her he's a Type O.

"I'm going to be your donor," she said.

'The Liver Journey'

More than 1,300 liver transplants have been performed at the Kovler Organ Transplantation Center of Chicago's Northwestern Memorial Hospital, where Lori Clark has worked in the transplant division for 20 years. As organ transplant nurse coordinator, it's her job to take care of organ recipients (like Casey) and evaluate donors (like Ziemba).

Clark said when the surgery happens, two operating rooms are going at the same time. Both donor and recipient are put under. The transplant team makes a midline incision in the donor. The recipient gets a larger incision, like an upside down "T" that starts under the breastbone and branches out at the upper abdomen.

The surgeons remove half of the donor's liver, flush it out, set it in a sterile basin on ice and walk it to the recipient's room, next door. Then, the donor liver is placed in the recipient, blood flow is reestablished, bile ducts reconnected, and the incision is then closed. Clark said the surgery usually takes six to eight hours for the recipient, and about four for the donor.

"It's long hours, but an amazing process," she said.

Recovery isn't quick; both patients will be in the hospital for two or three days. They'll probably be able to get up and walk around the day after the surgery, but they can't do any physical activity for six weeks.

"Not only are they recovering from a major surgery, but they're regrowing an organ," Clark said. "It grows 90 percent back in the first three months, but it's a huge organ, so it just drains them."

Casey's transplant team includes surgeons, an anesthesiologist, a hepatologist, the transplant nurse coordinator, a transplant nurse practitioner, a psychiatrist, a social worker, a financial liaison, a registered dietitian and clinical coordinators.

The surgery boasts a high survival rate and Clark loves it.

"To see these patients come back in healthy, there's no comparison," Clark said. "When you see them as sick as they are, then they go through the transplant and you can't even tell anything was wrong. They're living their lives and enjoying their families. To be a part of that is very rewarding."

In order to be Casey's donor, though, Ziemba still had to travel to Chicago to undergo the series of tests to see if she would be a good match. She planned to stay with some family in Chicago, who offered to take care of her after the surgery as well.

But Ziemba felt unsure about going. She felt nervous about the surgery, nervous about being laid up for three months afterward, unable to work at the height of her photography career, and afraid she'd be forgotten quickly in her field. Not to mention her living expenses would still need to be paid.

She sought the advice of the transplant surgeon she photographs. His reaction was not positive.

"He told me, 'If you were my daughter, I would tell you not to do it. In terms of surgery, this is one of the largest and most complicated. If it was a kidney, no big deal. But this is a much higher risk. The liver might not grow back correctly. It's the bloodiest organ,'" Ziemba said. "That was not what I wanted to hear. I was very nervous about it. Very disheartened."

In her uncertainty, she called her mom.

"My mother said, 'Honey, I'm very scared about you doing this, but we're not the kind of people who would walk away from this,'" Ziemba said. "How could you possibly watch someone that you care about die? How could you live with yourself the rest of your life knowing that you could have saved them? That's where I've come to. My risks are low compared to him. I made the decision. As far as I'm concerned, there is no choice."

So she called to make the appointments for her tests. But when she called, she found out she was the only candidate who has gotten this far for Casey.

"In my head, I assumed there was a list of people," Ziemba said. "I didn't get the importance of that. I was so blown away."

Ziemba started documenting the situation on her Facebook page. She called it, "The Liver Journey." In the middle of October, she posted from the hospital: "Getting ready for a full day of having my body and mind poked, prodded and examined. Feeling butterflies. No telling what they're going to find!"

She went through extensive blood tests, looking for any sexually transmitted diseases, tuberculosis, diabetes and more. She underwent an MRI scan of her liver and her spleen. Doctors measured the volume and size of her liver. Because Ziemba's age is the cut-off, they went a step further and ordered a cardiac workup. She had an EKG and echocardiograms.

"Good news on several fronts," she posted on Facebook. "The doc has told me my heart is equivalent to a much younger healthy person! ... Phase 2 of The Liver Journey is complete."

There's another reason Ziemba feels compelled to do this: Clare.

Ziemba had a challenging relationship with her father growing up; after her parents divorced, he wasn't around much. But in the last three months of his life, Ziemba moved in and took care of him.

"We finally had a close relationship and I just wanted more time [with him]," Ziemba said. She paused to collect herself. "I want Clare to have more time with her father. As much time as she can have."

Should I Let Her Do This?

More than $20,000 worth of tests later--all covered by Casey's insurance--the transplant team sat down at the end of October to evaluate Ziemba as a possible match for Casey. When she heard the news, she called Casey.

"I've been approved," she told him. She waited a few seconds, then she heard a noise, like a cry of disbelief or an exhale. Like a primal noise.

"And then he had tears," Ziemba said. "For a few minutes, we just didn't know what to say. It was very tearful. It's so big, you know. It's so big."

Casey didn't know how to feel about Ziemba's offer--or the reality that she'd been approved by the doctors.

"I felt very conflicted," Casey said. "You want to jump up and down, but then you also want to ask, 'Are you sure you want to do this?' Because I'm just as concerned for her as I am for myself. I'm still going through this dance. Should I really do this, let someone potentially sacrifice their life for me?"

Ziemba said Casey expressed over and over how grateful he was. That makes her feel like it's the right thing to do.

"I have the decision all the way up until the time they put me out," she said. "There's always a chance I could freak out and change my mind. But he's so deserving. He is so deserving of this."

Act Of love

In late October, Casey went to New Mexico searching for a holistic treatment for his illness that would keep both him and Ziemba off the operating table. Ziemba drove over so they could meet. It was the first time they'd seen each other face-to-face in 25 years.

It was kind of awkward, Ziemba admitted. They both had a picture of each other from 25 years ago, but to see someone age almost three decades in a matter of seconds was--weird.

"This isn't just, 'Hey, how are you doing?' at a party. It's like, 'Hey, I'm potentially going to give you part of one of my organs,'" Ziemba said. "I didn't want the first time I saw him to be on gurneys, being like, 'K, see ya in the OR.'"

"The Liver Journey" of Ziemba and Casey may seem like a love story waiting to happen, but they've agreed not to go there. No, this won't be the subject of the toast at their wedding and no, they won't sell the movie rights after they're happily married.

"Ain't gonna happen," Ziemba said. "You know, when people go through situations like this, there's some projection. He and I will be sharing something you don't share with anyone else. It's not the only time you've been in love or dated or had sex; but we will be the one and only people who share this organ."

She said it's not uncommon for people to take the level of intimacy and mistake it for love and romance. Especially since they've already had a relationship, it might be easier to slip into that. They both agreed that shouldn't happen--but do people experience love without romance.

Casey told a friend the story of how he and Ziemba had reconnected, and what it meant for his health.

"My friend said, 'You know what that is, right?' And I said, 'It's great!' She said, 'No, it's an act of love.' And it just hit me like a ton of bricks," Casey said. "There's no other reason you'd do it. Because it's an act of love. That's why it's so hard to find a living donor."

It's possible that Ziemba and Casey wouldn't be in this situation if everyone checked the "organ donor" box when getting their drivers license. According to the Idaho Transportation Department, Ada County had almost 45,000 people check that box in 2012, the highest it's ever been. But nearly 30,000 people declined to donate organs if killed in an accident. Throughout the whole state of Idaho, 166,000 licensed drivers are potential organ donors, while almost 128,000 aren't.

"Why not become an organ donor?" Casey said. "If you're dead, or you're dying, why not save a life, or two or three or five?"

For now, Casey and Ziemba will wait. Because they don't want to put Ziemba in unnecessary danger, the surgeons don't want to do the transplant until Casey is very sick again. If they wait too long and Casey is too sick, he will have a harder time recovering from the surgery. If they wait even longer, Ziemba, currently 55 years old, might lose her eligibility due to the age limit.

Ziemba would prefer to have the surgery in the summer, when it's too hot to work in Tucson anyway. She'd rather spend those three months laid up on the couch in her air-conditioned apartment with her dog, Diego.

That works well for Casey, who is experimenting with some holistic options and needs the time to see if they'll work. Casey is feeling the decline, though. He went through another intervention in Chicago in the middle of December to feel a little bit better and buy a little more time.

Casey's daughter Clare has already agreed to photograph the surgery for Ziemba. She said she's "super cool with blood and all that. ... [Photographing the surgery] would be the coolest thing ever."

Casey believes the best healing a person can have is to find the unfinished business in his or her life, and address it. Maybe that's what he was doing when he reached out to old friends like Ziemba in the first place. And maybe for Ziemba, this is her unfinished business, too--a way to extend a relationship between a father and his daughter.

They both agree that the reason they dated more than 25 years ago, for four or six months in a long-distance relationship that ended up not working out anyway, was for this.

"This is potentially what all that was about," Ziemba said. "That 25 years later, we would be in this situation. It all began way back then."