The Wearying Road from Diagnosis to Liver Transplant

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Dave and Janet Thorin, BJU alumnus who will be receiving a liver transplant from a donor who is also a BJU alumnus

“I’m anticipating that with the new liver, everything will just kind of hopefully improve exponentially,” said 2008 BJU nursing graduate Janet (Pierce) Thorin. Thorin was diagnosed with primary sclerosing cholangitis, or PSC, in 2004 soon after graduating from high school. Though she needed a liver transplant for years, she was recently matched with fellow BJU alumnus Margaret Stegall. Her journey from diagnosis to finding a match was arduous, and Thorin is anticipating a successful end to the journey.

See Also: Alumni Connection Leads to Match to Save a Life

The Initial Mystery

Thorin began to become ill off and on at the end of her junior year of high school. “It was just vague sinus infections, just not feeling well,” she said. This cycle continued into her senior year, which Thorin said she doesn’t “really remember any” of the first semester. The flexibility of homeschooling, however, allowed her to rest when she didn’t feel well and catch up during the times she felt better.

By Christmas break, her family knew something was very wrong. After multiple tests and an aborted surgery for a suspected cyst, which instead revealed Crohn’s disease, Thorin was referred to a surgeon in Denver.

After the surgery to repair the fistula, Thorin developed an infection. The surgeon patched Thorin’s intestine with a mixture of fiber and glue. “It’s supposed to hold everything together, and then the body would just absorb it,” said Thorin. That also got infected.

To allow the infected intestine to heal, the surgeon performed an ileostomy, a procedure that would bypass that section of the intestine. When Thorin went in a few months later to have the procedure reversed, the surgeon wasn’t pleased with the strength of the tissue. He referred her to a gastroenterologist to find out what else could be going on to keep her from healing.

The gastroenterologist ran bloodwork and found that Thorin’s liver enzymes were elevated. They watched for a few months, and when her enzymes didn’t go down, the doctor did a liver biopsy. The liver biopsy showed that Thorin had primary sclerosing cholangitis. “That actually confirmed that I had Crohn’s,” said Thorin, “because as (the gastroenterologist) explained it, only about 3% of people with either Crohn’s or ulcerative colitis have PSC, but everyone who has PSC has Crohn’s or also colitis.”

A healthy liver produces bile which digests fat. The digested fat then is secreted from the liver into the intestines via ducts. Blood passes through the liver, carrying away these fats and other nutrients processed in the liver. In a liver with PSC, bile is still being produced, but inflammation causes the ducts to become scarred, gradually making them too narrow and hard for bile to pass through. The inflammation spreads from the smaller ducts to the larger ducts, causing serious liver damage.

Thorin was told her disease would eventually require a transplant. “They were thinking maybe about 10 years down the road. … At this point, I was 19. It was 2004.” Thorin completed the transplant evaluation and was placed on the donor list for the first time in 2010.

Induction to the BJU Community

Because of all of the surgeries and medical mysteries being solved, Thorin decided to delay her enrollment at BJU for a year. In the meanwhile, she attended Northeastern Junior College in Sterling, Colorado, to check some core classes off her checklist.

Said Thorin: “I was able to actually get just about all of the prereqs for the nursing class done. I think I needed a communication class and I think it was nutrition or something like that by the time I got (to BJU), but that was really nice because then later on I was able to take extra classes, home entertaining and music and things like that.”

After arriving at BJU in 2004, Thorin graduated on time.

She returned to Colorado after graduation and began working as a nurse. She and her husband Dave Thorin, also a BJU alumnus (1995), met at church in 2006 and were married in 2016. He has been supporting her through her PSC.

A Disqualifying Second Mystery

She worked as a registered nurse full time until the Thorins were married, and then she worked as a staffer. “I’d do one to two days a week. Gradually, I could tell it was getting harder and harder for me to do those shifts. The 12-hour ones especially.”

Though her fatigue and other symptoms were making it difficult to do what she loves, Janet saw God’s sustaining grace helping her through each day. “He would either work it out to where I would either have the strength to deal with the patients and families and everything that was going on that day, or He would work it out to where my load was a little bit lighter than what it could have been,” she said.

Yet two years ago, the Thorins faced another challenge. Janet began having severe pain in her feet, hips and back. During a routine abdomen scan to check her liver, the doctors found compression fractures in her mid and lower spine.

After several X-rays, suspicions of cancer, further scans, bone biopsies and other tests, Janet finally received a diagnosis in October 2020. This new disease was chronic recurrent multifocal osteomyelitis, which causes inflammation in and around the bones. This rare disease is related to Crohn’s disease and is diagnosed by eliminating all other diagnoses, a process that can take a year or more to complete.

Unfortunately, because of the severe pain Janet was in because of the fractures caused by the osteomyelitis, she could no longer walk unassisted, a condition for being eligible for a liver transplant. She had also lost over 25 pounds during this time. As a result, she was inactivated from consideration for a transplant.

Once the osteomyelitis diagnosis was reached, however, Janet was placed on the TNF inhibitor Humira. “We started it, but we had no idea how it would work, how well it would work, how fast it would work, if it would work,” said Janet.

“Before this, I was taking pain medicine around the clock. … And within a week of starting the Humira, getting that first shot, I was off pretty much everything except if I had a headache, or if I was really tired or really sore after being up for a while.

“Almost immediately, I was able to walk. I’d say within the first couple of weeks, I was able to get around, not completely (without) having to use my walker, but taking a few steps without it, getting around the house a little bit better. So that was a major blessing because that was one of the stipulations to get back to activated on the list … I had to be able to walk without any assistance.”

Reaching Out to the Alumni Community

Though Janet had completed the liver transplant evaluation in 2010, the Thorins had not yet found a donor. In addition, Janet’s disease gives her a deceptively low MELD score — the score that determines a liver transplant candidate’s position on the waiting list.

Said Janet: “My hepatologist had been saying for probably five or six years (at one point), you need a liver, and if one were available today I’d say take it. She told me I don’t know how many times, I think you’re sicker than you look. I think you’re sicker than you act, and you need a liver.”

As she dealt with the PSC, Janet would have endoscopic retrograde cholangiopancreatographies (ERCPs) done to clean out the bile ducts in her liver. With each procedure, the hepatologist would place stents in her ducts to keep them open. However, after the 29th one, the point came when the procedure was no longer effective. “So that was kind of our indication that things had progressed, that, OK, the only thing left is a liver transplant,” said Dave.

The first request for a donor for Janet was made on the BJU General Alumni Facebook group page on June 29, 2020. “The doctors had said, have you thought about doing social media? I’d been wanting to do it for a while. I could just never figure (it) out. … I even talked to the transplant coordinator and said, what am I authorized to say? What do I need to watch out not to say?”

The Thorins’ pastor’s wife Juanita Unruh — a 1988 BJU alumnus — offered to post to the BJU alumni Facebook page on their behalf. Dave’s response was “go for it because I’ve been trying to figure out what to do, plus work, (and) keep everything straight. I just don’t even know where to start.”

The result was a flood of prayers and volunteers. Said Dave: “Her mom was getting emails and people letting her know” they were applying as donors.

After beginning the Humira and improving her osteomyelitis symptoms, Janet was reactivated for consideration for a liver transplant in November 2020. Almost immediately, the Thorins received word that a donor had been found. However, though the Thorins were not aware, that donor fell through.

Making a Connection

While the Thorins were in Nebraska visiting family for Christmas, another donor was being considered. Little did they know this donor, another fellow alumni, had seen their Facebook post and felt burdened to help.

When the Thorins returned home on Dec. 28, Janet was asked to see her primary care physician to have some tests done. “That kind of let us know, all right, they’re very close with someone,” said Dave.

“And then Janet got the call.” She has a living organ donor match.

Hope for the Future

Not only does Janet have a matching donor in Margaret Stegall, she is also high on the list for a deceased organ donor. Anytime before Stegall’s liver is removed, Janet “could still receive a call for a transplant in that time frame to come down in 2–3 hours to get a liver that has just been made available from someone who is an organ donor and has clinically died,” said Dave. “We wait for the Lord’s timing, will and way in all of this.”

The Thorins are filled with hope for Janet’s future. While there is about a 15% chance her PSC may come back, it would follow the same progression. “It would be like starting over,” said Janet. Only this time without the guesswork. “From what I’ve heard with people that have this disease, they do very well after (the liver transplant).”

The Thorins said in addition to relief from symptoms, they are looking forward to life returning to what it was before symptoms hindered everyday activities. “She looks forward to being able to get back in the hospital as a nurse giving care, rather than receiving it all the time. We look forward to being able to take our walks together like we did when dating. We look forward to being able to just go out on excursions and not be limited to what we can and cannot do because she will be worn out for 1–2 days just by going somewhere for a few hours,” said Dave.

Said Janet: “God helped through the whole process. (But I’m) looking forward to finally having some relief. I was thinking too, another … benefit, I guess, to having (the liver transplant) is, I haven’t been able to go a full day of Sundays — morning service, evening service — for probably a year now. … I’ve really missed that. So that’s one thing, definitely, that I’m looking forward to being able to get back to doing. And then nursing, of course, because I really miss that.”

 

BJUtoday and Alumni Relations will be following the story of alumni Janet Thorin (’08), a nurse who has battled degenerative liver disease for many years, and Margaret Stegall (’16), her prospective donor. See all articles in the story.

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Krystal Allweil

Krystal Allweil is the content marketing specialist for BJU’s marketing department and is the managing editor for BJUtoday.