JACKSON, Wyo. — Alyssa Fairbanks holds her phone in front of her, smiling into the screen as she FaceTimes her toddler from a hospital bed in Jackson.
It’s a Sunday night and she’s been in Room 125 of St. John’s Medical Center — a suite she’s been in before — for more than 24 hours. It’s her sixth hospital admission since she had a liver transplant in December.
The hospital gown hangs on her bony shoulders. She’s worn a lot of these flimsy, back-tied garments in the past six months. This one, she says, is pretty comfy. She’d pulled her short dark hair, once long and thick, away from her face. She chopped it above her shoulders a few weeks ago when it started falling out in clumps.
Her neck is scarred by a cluster of purple tracks from needle sticks and catheter lines. A port hangs from her left bicep, recently capped after she administered a nightly dose of an anti-fungal medication. The abdominal pain that landed her in the hospital is creeping back and she winces a bit as she wraps her arm around her stomach.
But Fairbanks smiles when she looks at her son, Paxton, and asks him about his dinner. They talk about the sleepover he’s having at a friend’s house, and she promises she’ll see him before he heads to preschool the next morning.
It’s the small slice of normal she’ll have for the day.
The rest is a reminder that, while six months out from a live liver transplant and three out from a second transplant, she’s still not healthy. She won’t be for months, even if she doesn’t hit another devastating setback.
Fairbanks underwent a live liver transplant over the winter, a procedure expected to save her from a diagnosis she’s been battling since she was a teen. The disease — primary sclerosing cholangitis — erodes the bile ducts in the liver, causing cirrhosis of the organ. It’s a death sentence without a transplant.
The first transplant, a live liver donation from a family friend, failed a few months after it was completed at the Mayo Clinic in Arizona. Fairbanks’ health plummeted as her MELD score — a number that examines three organ values for those in liver failure — rose. By the time she received a second transplant in March she had the highest score possible: 40.
She’s had blood clots and infections, five open abdominal surgeries, including the two transplants. Of the long list of possible post-surgical complications, she’s faced almost all of them.
It doesn’t feel like it, and some days it doesn’t look like it, but she is getting better. This is recovery.
“It’s just one complication after another,” said Jenny Christensen-McIver, a co-worker-turned-close-friend of Fairbanks. “Some of them aren’t that surprising. I worked for a general surgeon. I know that some of those complications can happen.
“It’s just frustrating to watch her not catch a break,” she said. “Do we have to hit every one of them? Should we have just made a list of boxes and crossed every single one of them off?”
Fairbanks counts 20 surgical procedures in the past six months.
She’s lost nearly 40 pounds. She has bald patches on her scalp and her cheeks are puffy from the prednisone she takes as part of a cocktail of other anti-rejection meds, some she’s expected to take the rest of her life.
It’s not common for a transplant patient to need a second transplant, a “re-transplant,” as Dr. Kunam Reddy calls it.
Reddy, Fairbanks’ surgeon, performed both transplants. Only about 5 to 10 percent of patients need to go down that road, he said.
A live transplant, her first surgery, is a complex procedure. One team of doctors slices a liver lobe from the living donor while another team removes the recipient’s diseased liver and prepares for the transplant.
There are a lot of connections between recipient and donor — ducts, blood vessels — a lot of sutures and a lot of potential places for problems, Reddy said. It’s more complicated than a transplant from a deceased donor, which is still a delicate process.
“Anytime you put in sutures, they can have some scar formation,” Reddy said. “But the scar formation got worse with the bile leak.”
Fairbanks developed the leak shortly after the first transplant. She was readmitted to the Mayo Clinic twice for sepsis.
Most of the time, Reddy said, even seemingly serious issues can be managed without surgery. But Fairbanks’ case was more complicated. Her bile ducts were destroyed by her disease before the first transplant, so when the operation was performed Reddy removed and reconstructed her ducts from pieces of her bowel.
To put it simply, “That’s always a little bit more complicated,” he said.
Less than a month after the transplant she was back on the table for doctors to flush out a growing infection and spot the source of the leak. She started to show some post-op improvement, and built enough strength to get back home to Jackson.
It was a short-lived step forward. Pain in her abdomen started to build again, landing her at St. John’s in early February. She was flown back to Phoenix a few weeks later.
“Alyssa has a challenging liver disease — it’s one of those immune-mediated liver diseases,” said Dr. Bashar Aqel, a transplant hematologist at the Mayo Clinic. “Despite all the complications she had because of her disease, her MELD score was always low. Her only chance was somebody — a loved one, a friend — coming forward and donating a liver to her.”
The MELD score, developed at the Mayo Clinic and initially named as such — the Mayo End-stage Liver Disease score — prioritizes transplant recipients for deceased donors. The score accounts for three organ values, two of which are unaffected by primary sclerosing cholangitis.
It’s difficult for these patients to get on the deceased donor list, even as their health continues to steadily decline.
Finding Leslie Still, a family friend who was willing to donate a lobe of her liver, gave Fairbanks new hope for survival.
The two women went through a slew of blood tests and scans before the procedure, but Fairbanks continued to hold her breath while Still went under the knife on Dec. 6. The final test in determining if two people are a match comes down to the surgical suite, when surgeons physically inspect the organ. Still was the perfect match for Fairbanks, and the transplant was completed.
The bile leak discovered shortly after kicked off a series of problems, starting with infection. Infection worsened the expected scarring. Scarring narrowed vital vessels, like the hepatic artery and the portal vein.
While the transplanted liver continued to function, it was slowly losing blood supply.
“It’s almost like a snowball effect,” Aqel said. “It started with one complication. We addressed that, and it moved to another one.”
Blood cultures taken in February showed that vancomycin-resistant enterococcus, a bacterial strain resistant to antibiotic therapy, was growing in her body.
“That’s when we looked at the whole picture,” Aqel said. “We all invested in a transplant, and we have an excellent outcomes from living-donor liver transplants. But we came to a conclusion as a team that, despite the fact that we may be able to get things better for somebody young like her, most likely she would end with some residual dysfunction.”
Fairbanks was relisted for a transplant a few weeks later and underwent a second surgery on March 24.
It was a huge setback.
But one, Christensen-McIver said, that was necessary for progress.
“She would have never gotten that sick if she had never attempted,” Christensen-McIver said. “It’s a blessing in disguise. If she had never had a live donor, she never would have gotten sick enough to get on the deceased list.”
Fairbanks used to want the scar in the shape of a Mercedes symbol running down her sternum and under her rib cage. It would be a badge of pride, a sign that she got the organ she needed for a normal and healthy life.
Before the transplant her poorly functioning liver had led to toxins building in the body, seen in her yellow-tinged skin and felt in lethargy and nausea. The accumulation of ammonia made her bones more brittle and her mind foggy. At 28 years old it was exhausting to exist.
Her family knows this disease well — her father, Duane, died from complications of primary sclerosing cholangitis in 2008. There is no cure, aside from a transplant. He died while waiting.
She’s struggled with anxiety and depression since her father died, and admits she feels hopeless at times. She once saw a future for herself as a nurse — a profession she worked in up until a few years ago — but as her health has declined and she continues to be hit with waves of obstacles, it’s hard to look far ahead.
“Going through a liver transplant just once is hard enough. It’s a long road to recovery for most people,” said Heidi Harrold, a physician assistant who treated Fairbanks after both procedures. “But to go through two transplants in a three-, four-month period as well as have complications between — she’s a very strong individual.”
Fairbanks finds herself counting time in days, sometimes hours. Last week she threw a birthday party for Paxton, a summer celebration for his third birthday. She’d been talking to him about his “Happy Day” for several days, and a small group was expected to stop by for pizza and cake.
But come the day of the party, she was tucked away in a bedroom at her mom’s house, too nauseated, exhausted and in pain to get up. She kept her eye on the clock, slowing crossing off the things on her list she wanted to do — put together party bags, pick out a pile of presents — and narrowed to only the things she had to do: get dressed and pick up the cake.
It’s frustrating that such normal things are so difficult, some days impossible.
By the time she was able to get up in the afternoon, anxiety had set in. Nothing was going to be ready in time.
She walked out to find her mom had completed nearly all of the party prep. Tears welled in her eyes as she looked at the decorations and table of gifts.
“My shoulders just shrunk a little bit,” she said. “I was so relieved. I wouldn’t have been able to do this, but I had promised him. I’m lucky my mom was there.”
She hates having to rely on so many people around her. She also hates letting people down.
She struggles with the line between independence and asking for help. When she was young her father told her this disease wouldn’t hold her back — she couldn’t let it. On hard days she clings to that sentiment.
“She needs some autonomy and she wants to do it,” Christensen-McIver said. “But it’s hard to watch her struggle between wanting to do it and not having the energy.”
So much about Fairbanks’ most recent St. John’s stay felt familiar — the scans, the frequent checks from nurses, the trays of hospital food that she picked at. But there was a part that felt different, too. It was less scary to be there.
Unlike other times she has landed in the hospital, her local team felt confident her pain could be managed in Jackson, something she prays for whenever there’s a chance she’ll be admitted. She’s often quickly flown to Salt Lake City or Phoenix, to a bigger facility with more resources.
But this time her pain, attributed to the dose of one of her medications and lingering gastrointestinal issues, could be addressed here.
She was released within 48 hours.
Fairbanks admits she’s angry sometimes, bitter that she’s faced so many complications. She shouldn’t have needed a second surgery. She shouldn’t be so gangly that she can’t recognize herself in the mirror anymore. She’s embarrassed to be in public.
Some days things feel very unfair.
But they’re getting fewer and farther between. She is getting better. She’s gained eight pounds since she got back home in Jackson. She’s able to climb the 16 steps to her apartment a little more easily She feels comfortable driving a car again.
With a bit of optimism she dares to say she’s recovering.
“I really do feel like I’m on the actual road to recovery,” she said. “I feel like we got off the dirt road — maybe — and now there won’t be so many bumps.”
Information from: Jackson Hole (Wyo.) News And Guide, http://www.jhnewsandguide.com