After undergoing a liver transplant surgery in August, Patrick Casey spent a lot of time watching TV. One night, he was channel surfing when something caught his eye: a show on tiny houses, which are sometimes smaller than 300 square feet.
"I thought, 'Oh my God, these people are thinking kind of like me: [trying] to simplify their lives and have a really high quality-of-life but a tiny life," Casey said. "When I get back to Boise, I'm going to start developing that idea for myself."
Casey had his surgery at the Kovler Organ Transplant Center at Northwestern Memorial Hospital in Chicago, where he has been recovering and thinking a lot about a life he never thought he'd be able to live. He pictures finding a lot in the city, growing a 3,600-square-foot garden and living in his own tiny house. He wants to learn how to fly fish. And he can't wait to see his daughter graduate high school.
Thinking about any kind of future is new for Casey. Only a few months ago, he thought his life was over.
"I didn't think I was going to make it," Casey said. "It was so challenging and so painful. I've endured suffering that has taken me to the edge of life itself."
Boise Weekly first met Patrick Casey, 65, in December 2013, during his search for a liver donor (BW, Features, "Planning for Death, Searching for Life," Dec.18, 2013). Almost two decades ago, the 65-year-old chiropractor was diagnosed with primary sclerosing cholangitis (PSC), a progressive disease in which the liver attacks itself until the organ is little more than scar tissue. The only known cure is a liver transplant.
As Casey's condition worsened his skin constantly itched, he went weeks without sleep, he struggled with chronic weakness and, at times, felt like his brain was shutting down. Seeing no other option, Casey sent an email in August 2013 asking friends and family to consider donating a portion of their liver. None of them could, but the request found its way to an unlikely source.
BW readers will remember that Casey reconnected with 55-year-old photographer Roni Ziemba, a woman he had dated 26 years ago, who now lives in Tucson, Ariz. When Ziemba learned about Casey's condition, she agreed to donate half of her liver. She called the process "the liver journey."
"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 told BW last winter. "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? ... I made the decision. As far as I'm concerned, there is no choice."
Ziemba and Casey flew to Chicago and underwent the surgeries on Aug. 21. Doctors removed half of Ziemba's liver, flushed it out, put it on ice and walked it to Casey's operating room, where it was transplanted into him, blood flow reestablished and bile ducts reconnected. "When you replace this old, dying liver and you put in this pink, healthy liver, [the doctors] said they immediately saw the organ going to work," Ziemba said. "Now, you've got this vital liver processing his blood. As long as I've seen him, he's been sick. He's always looked gray and gaunt. ... [Now] he has color in his cheeks. He looks better than I've seen him in 26 years."
Casey and Ziemba have only seen each other a handful of times since the surgery, but each time has been intense.
"There is no greater gift than seeing the look on Pat's face when he sees me," Ziemba said. "I have never seen a look of such gratitude and appreciation. To be the recipient of that is huge and maybe even a little overwhelming. What do I do with all of this?"
Casey and Ziemba will have plenty of time to think about their gifts--they both have a long recovery period ahead. Ziemba's wound wouldn't close, leaving what she called "worm holes": two openings through which she could actually see into her body. She'll recover at home in Tucson, but her activities will be limited and it may take a year for her energy level to return to normal. Ziemba said she knew the timeline of recovery going into the donation process, but she has a much better understanding now of just how long it will take to heal.
"It's core," she said. "Every time I move, something hurts. Getting up and down from a chair, from bed, you have to use your stomach muscles. It's every second of the day; there's no forgetting about it. I can actually feel [my liver] growing rapidly. It's pretty much to 75 percent of its normal size. It's growing like a sunflower grows."
With a portion of Ziemba's liver, Casey was doing better than expected, but he's not out of the woods yet. Late last week, he came down with chills and a fever--a classic sign of rejection. After an examination at the transplant clinic, he was readmitted to the hospital, but his medical team has yet to figure out what's wrong. Assuming the problem is ironed out, he's expected to return home mid-October, where he'll have a reunion with his 17-year-old daughter.
He still struggles to articulate his gratitude for Ziemba, though.
"She's a miracle," he said. "The whole process from when I first met her 26 years ago all the way to now has been not only a remarkable journey, but one of profound mystery and remarkable faith."
Ziemba said she hopes those following her story will be more likely to donate an organ and save someone's life. She's looking forward to traveling to Boise in a year to celebrate the anniversary of the surgery.
It will take Casey six to eight months to rebuild the muscle he lost after both a recent open heart surgery and the transplant surgery. He can't button his own clothes and he may never be able to practice chiropractic again, but given the choice between a healthy life, or what he's been through, his answer was unexpected.
"If you would have asked me that in the ICU, I would have given anything for the first choice," Casey said. "But I feel like I've evolved and grown so much through this than I ever would have if I didn't go through it. It's changed me in some profound ways. I'm just glad that I made it."