Kansas woman survives liver transplants, multiple surgeries

TOPEKA, Kan. (AP) - Teresa Tostenrud-Hoff was 22 years old when doctors diagnosed her with a rare liver disease, primary sclerosing cholangitis.

“The average time from diagnosis to death is 15 years. I was 22 at the time,” Tostenrud-Hoff told the Topeka Capital-Journal . “You add 15 years to 22, that makes you 37. I’ll be 37 in April. And I’m here.”

The words of affirmation, the grin that accompanies them, even Tostenrud-Hoff’s posture underscore the fight this Topeka resident has been in and the absolute refusal to give up. Her body is a map of scars: two liver transplants, colon surgery, sores as her body fought, multiple near-death experiences.

“I’ll look down at my hands and my legs, and my scars, and it’s just like… they’re just tangible reminders of what I’ve been through, but they’re reminders that I survived,” Tostenrud-hoff said. “The only reason I survived, I think, is by the grace of God, cause there’s so many scientific reasons I should not be here. It defies humanity.”

Her medical battles began long before she turned 22.

A restless kid and poor eater, Tostenrud-Hoff said she complained constantly as a girl growing up in Montana about stomach pain. Her mother, a pharmacist, tried gluten-free diets before they were popular and dairy-free.

“She would shred carrots to make it look like cheese to try and trick me,” Tostenrud-Hoff said. “I was so jealous of everybody putting sour cream on top of everything. I just wanted a bowl of that stuff.”

Nothing worked. Doctors said it was horrible gas, but finally a gastroenterologist in Billings, Montana, tested her for Crohn’s Disease or colitis. She was 13 and sick every day, losing significant amounts of blood through her stool. A diagnosis wasn’t coming, though, as tests showed potential for both diseases. Tostenrud-Hoff went on medications, which she developed allergies to and resistance to antibiotics. She had multiple blood transfusions and was in and out of the hospital throughout high school.

Still, she participated in debate team, played varsity tennis, was on the swim team and pulled in straight As. Those grades were important to her, and academics was one of the few areas where she felt confident and strong.

In a family full of medical-focused people and having lived the first years of her life among medical professionals, Tostenrud-Hoff decided to pursue a physical therapy degree. She considered medicine, like her brother who is today an anesthesiologist, but was worried the disease plaguing her body would make the long hours too tough.

She began school at the University of North Dakota, but in her sophomore year, she began to get really sick.

“I was losing so much weight and so much blood,” Tostenrud-Hoff said. “I was in the hospital constantly, still maintaining my As, but having a really hard time with it. Any time I tried to date someone, the illness got in the way. They didn’t get how disciplined I had to be to survive.”

For the first time, Tostenrud-Hoff went to Mayo Clinic. She was 19 years old.

William J. Tremaine, M.D., who specializes in inflammatory bowel diseases like Crohn’s, put her through multiple tests.

“He said your colon’s a mess. It’s showing early signs of cancer,” Tostenrud-Hoff recalled. “Your small intestine has what’s called backwash ileitis, where inflammation backs up into the small intestine, which could be confused with Crohn’s. And he said, I think, for you at your age, you can heal well. Let’s take out your colon.”

In pain, wanting to continue with her schooling, Tostenrud-Hoff said, “Let’s go for it.” Two months later she had a total colectomy, or surgical removal of her colon, including the formation of a J pouch, a J-shaped reservoir created out of a patient’s small intestine so they can continue to store and pass stool.

She returned to school with an ileostomy, an opening in her abdomen where stool was collected outside of her body. For most 19-year-olds, that would have been tough, but for the first time in many Tostenrud-Hoff felt good.

“I felt awesome. I came back immediately from that surgery, and I was running four miles a day,” she said. “I was just like on fire. I’d never felt that good in my life.”

Four months later, doctors reversed the ileostomy, reconnecting all of her “plumbing.”

After missing a semester for surgeries, Tostenrud-Hoff couldn’t get into PT school the next semester as she had planned. She went to stay at her brother’s apartment in Bozeman, Montana, while he was going to Navy officer training school, so she could continue to take classes to be ready to apply the next year.

Pain returned. Bleeding returned. Tostenrud-Hoff was running a fever constantly.

“I was like what is going on? This is supposed to be the cure,” she said. “I was building resistance to strong antibiotics that you should be using only in extreme circumstances.”

Emotionally, numbness set in.

“I think I had to be (numb) to deal with it,” she said. “Because at that age, I had faith. I went to a Catholic school. I was confirmed. I believed in God, but I didn’t know God. It wasn’t really until I felt like I knew him that I could really feel completely. That didn’t happen, really, until this last transplant.”

Still, Tostenrud-Hoff fought on. She got into PT school. But mid-way through the first semester, her symptoms got so bad that she returned to Mayo and asked them to disconnect from the pouch, do another ileostomy, and let the pouch “rest.” The doctors agreed, and she returned to school, with many of her symptoms alleviated dying down.

“I was willing to do that. I didn’t care about the ileostomy. I didn’t have a social life or anything,” she said. “I was studying.”

She laughed. “If anything, I figured it would be interesting to my class. We were learning how to treat patients - I can be an example. Cool by me.”

It was during this time she met Brad Hoff, the man who would become her husband and her “rock,” Tostenrud-Hoff said. They began their relationship by talking on the phone for several months, introduced accidentally when she answered a friend’s phone and began chatting with him. She was upfront about her medical problems.

“We kind of instantly were connecting,” Tostenrud-Hoff said. “It was very odd. I had this feeling come over me. This is weird. This is not usual for me. It’s a good thing he can’t see me because I have poop coming out of my side. I had a wig on. I had lost so much hair from malnutrition and stress and anxiety.”

As they continued to talk and discuss meeting, she warned him: “I’m totally cool if you walk away from this. I get it. I’m a lot to handle.”

He did not walk away. They met in a blizzard in Sioux Falls, where he was visiting his family over Christmas break from college, not too far from where Tostenrud-Hoff’s mother was traveling to visit family.

?(I asked her) can I ride along and can you drop me off in Sioux Falls so I can meet this guy?” Tostenrud-Hoff said. “I’m going to stay with his family for three days. She was like, what are you thinking? Do you have a plan b? So we met. It was in the middle of a blizzard in a Perkin’s parking lot off I-29, and my mom’s just like, ‘I’m going to say the rosary on the way to Minnesota because I have no idea what’s going on.’”

What was going on was the beginning of a relationship that would sustain Tostenrud-Hoff as her health worsened, allowing her to build a life that resembled normal. She was 21 and Hoff was 22. They married on May 27, 2005. Their marriage brought her to Topeka, where Hoff works at Legislative Post Audit for the state.

But before the two were married, as they talked long-distance and Tostenrud-Hoff continued in PT school, working a rotation in Seattle at a hospital, her pain got really bad.

She was diagnosed with primary sclerosing cholangitis, or PSC, a disease that more typically hits middle-aged men.

“I had had my ileostomy reversed earlier that year, and had about 10 months of everything working perfect,” she said. “Then this liver decided to kick in. I was like, are you kidding? Again? How many times can God test one person before they just crumble?”

But it was in that hospital room, sitting with a diagnosis that gave her an expected lifespan of another 15 years, that she made a decision. One might call it a vow.

“I said I am never going to get through this without a sense of humor. I can’t make plans because God’s just going to laugh at them and say, ‘It’s not your plan, it’s mine,’” Tostenrud-Hoff said. “I had to give that to him and just embrace anything that came my way as a lesson, not a curse, and use it somehow to help others in the same situation.

“I may not understand, but there’s a reason.”

Tostenrud-Hoff called Hoff and broke the news.

“They said you can get a transplant, but it’s an autoimmune disease. It’s not a liver disease,” she said. “It comes back. It can come back especially in women, young women with hormones and child-bearing age. Fantastic. Just blow me down again. I told Brad - we were kind of talking about marriage at that time - I understand if you want to leave. He said absolutely not. Absolutely not. You need me more than ever. I was like, ‘OK. Good. Because I do.’”

It got much worse before Tostenrud-Hoff received her first transplant. She itched all over, got multiple infections and fevers and was covered in sores. But she graduated in 2005, got married two weeks later, went on a two-week honeymoon, moved to Topeka and started working at St. Francis hospital. For more than two years, she worked and pushed on, even as she got sicker and sicker. Finally, at work, she collapsed.

Back at Mayo, they diagnosed her with signs of a cancer associated with PSC. She went on the liver transplant list at age 25. Multiple trips back and forth to Mayo occurred, and while awaiting answers to recent tests, Tostenrud-Hoff said she got the feeling the results would be bad.

“They were redoing brushings to stage cancer,” she said. “I said if this comes back bad, I want off the list. I want to come home and I want to die in my own bed, surrounded by my family,” she said. “I do not want to be in the hospital. We prayed about it and felt at peace with the decision. He went home to sleep.”

The next morning, a doctor said the tests looked worse. But he brought good news too. They had a liver, and they were on a tight timeline. The transplant had to be done fast. Tostenrud-Hoff tried to reach Hoff and her parents, who were traveling to Mayo to see her. She couldn’t reach either and was worried she’d be wheeled to surgery without saying goodbye to anyone, should it go wrong.

Hoff made it to the hospital just as they prepared her to go to surgery. She woke up hours later, with bright lights shining and in a white room, concerned she had died. But the surgery was a success, although she rejected the liver, requiring months of treatment to fight rejection.

“I was feeling better,” she said. “I wasn’t fatigued. I wasn’t yellow anymore.”

And she and Hoff wanted to have a baby. Liam Hoff was born April 27, 2010, after a closely monitored, high-risk pregnancy.

Blessings abounded, and Tostenrud-Hoff absorbed them and gave thanks to God every day.

When Liam was 5 months old, Tostenrud-Hoff had a major seizure. No one knows why, and it hasn’t happened again. And her J pouch began to cause problems again, requiring heavy-duty medications and treatment.

“I was starting to develop the liver disease all over again,” she said. “This was within two years. It made me afraid. I was very much led by fear. I can’t leave these two boys alone. They need me, and I’m not ready to let go of them. I’ve waited my whole life for this. This is not the plan. Not my plan, anyway.”

It was 2012-13, and her liver continued to worsen. Malabsorption was a problem. Tostenrud-Hoff turned yellow. Again.

Doctors argued about what to do. She was diagnosed with active Crohn’s Disease, a flash from the past she thought was over.

Debt piled on the family as she traveled constantly to Mayo in Minnesota, and was unable to work.

“What kept me sane was having a sense of humor, making that vow to myself to turn any negative into a positive,” Tostenrud-Hoff said.

Finally, after multiple issues that kept her from being on the transplant list including being hospitalized for infections and nearly dying in a car wreck after she passed out, Tostenrud-Hoff was relisted. She stayed at Mayo as she neared the top of the transplant list because she had to be close by. Hoff stayed home with Liam, visiting as often as possible. She spent hours alone in a room, reading and praying.

Tostenrud-Hoff was in Minnesota for months at the end of 2017. At Christmas, family came, most with the idea that they were saying goodbye. On Dec. 27, Tostenrud-Hoff got the call. They had a liver. It wasn’t ideal, as the patient had syphilis and a clotting disorder that could be genetic and might return. Did she want it?

“I was like, well, let me call my husband because I’m not bringing this dude’s girlfriends home with me to my husband,” she said.

Tostenrud-Hoff called her husband, who was in town with Liam for Christmas, in tears.

“I don’t know what to do. Do I take this? And then risk that they won’t even put me back on the list because I have one at least, and then go through this all over again,” Tostenrud-Hoff recalled. “He said, you know what, we’ve made it this far. Let’s just take it and get you some time. We’ll get you relisted. I promise you I will spend to my dying breath getting you back on that list for better liver.”

Her Mayo doctor called, too, and with a shaky voice, told her that she didn’t have long to live.

“If you don’t take this liver, you’re not going to be alive for me to offer you another one,” Tostenrud-Hoff recalled his words.

She took it.

“I got to spend the whole day with my family. Liam got to come and understand what mommy was going to be going through,” Tostenrud-Hoff said. “Everybody could come to peace with it. If something happened, we were at peace. I didn’t feel rushed this time like I did the first time when I couldn’t reach anybody and I was so full of fear. I’d already contemplated my own death. I was good to go, whatever happened.”

The liver donor turned out not to have syphilis, and the surgery went smoothly. No rejection, and Tostenrud-Hoff returned home to Topeka on Jan. 27.

She gives credit to God.

“It all started when I made that promise to myself that I wasn’t going to view this as a disability,” Tostenrud-Hoff said. “This is an opportunity to be an example, to use my suffering as an example for others on how to deal with it. My suffering is nothing compared to the suffering that Jesus had and went through. He knows all of our sins before we commit them. I can’t imagine knowing that. I feel like these things all had to happen to get through my thick human skull what faith is. Now that I get it, I feel more alive than I’ve ever been in my entire life.”

She wants to share her gratefulness and faith through a book and speaking, witnessing God’s love.

“I think the key to life is living without fear. The minute you do that, you can love yourself, you can accept love from others and you can give love in return. Those are the three things through the holy trinity that we’re called to do,” Tostenrud-Hoff said. “God loves us so that we can love ourselves, and then we can show that love to others, and then they can feel love.”

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Information from: The Topeka (Kan.) Capital-Journal, http://www.cjonline.com