By Norma Dittman
Review Staff Writer
Tim Larson, son of Eldon and Sharyl Larson, Fulda, received a life-saving liver transplant on March 2nd. The transplant was necessary due to Tim’s diagnosis of Primary Sclerosing Cholangitis (PSC), which is a chronic, progressive fatal liver disease. There is no cure for the disease other than a transplant.
“I had high liver proteins noticed during a blood test in 2012. We were actually checking for something unrelated to liver disease. My numbers were on the high end of normal,” Larson explained. “When I would have routine checkups for other things, the liver numbers seemed to keep climbing, so I had a biopsy done. The tests were inconclusive, so I tended to ignore it until about 2015 when I was diagnosed with ulcerative colitis. That’s when the light bulb went off that this could explain the liver enzymes, because they co-exist with Primary Sclerosing Cholangitis.”
Larson said that ulcerative colitis and PSC are usually diagnosed first one and then the other. “They told me that people live with PSC for years and years, and that I could possibly need a transplant down the road. I wasn’t too worried about it. The doctors did put me on medicine at that time to help the bile flow better. That is what PSC does – it closes up the bile ducts and the liver can’t process out what it is supposed to.”
Larson said that all seemed to be going pretty well until the winter of 2018. That is when he noticed that he was feeling itchy all of the time, but he chalked it down to winter dryness.
“Come spring, though, my wife noticed that my eyes were a tint of yellow. I went in for a routine ulcerative colitis checkup and she mentioned it to the doctor. The doctor confirmed that, yes, my eyes did look yellow.”
That is when a follow-up on the PSC level was done.
“And about July, the bottom fell out. That’s what happens – you don’t realize just how sick you are until you are really sick. That is when the liver is about 80 percent non functioning.”
Larson said he started getting sores on his skin, he was becoming more yellow, and his digestive system was no longer normal.
“I dropped twenty pounds of weight in one month and I was really sick. I looked like a squash colored skeleton. The doctors put me on the transplant list in November of 2018.”
Larson would have liver attacks that would cause severe pain. “I have had to avoid fatty or greasy foods because I would get liver attacks. They cause pain and other problems. It is the function of the liver to break down the fats and the sugars. So, I ate boiled or baked chicken, limited breads and other carbohydrates, and used very little oils and fats. Because the later stages of PSC can also cause fluid retention, he also cut out salt.
He explained that there is a Meld score where they do a series of numbers and assign the patient a number of liver function. Candidates who receive livers usually have number around 30. “But I was relatively low, in the low twenties. I was feeling so very sick and I didn’t want to have to keep living feeling that sick and looking like a pumpkin, so I started asking if there was someone who could be a living donor.”
What the Larson family learned is that a person’s liver can be split in half and it will regrow. “It is the only body organ that will do so,” Larson stressed.
In the search for a living donor, Larson had six candidates who were more than willing to help him, but not one of them was a match.
“The would-be donors were disqualified because they weren’t the right height and weight. A living liver donor has to be about the same body size as the recipient. Not having a donor out of those who were willing was a bummer. We even had a gentleman at church who was willing to step forward and donate. My wife, Alethea had been visiting with his wife at church and the woman asked her husband if he would be willing to be a donor. He is one inch shorter than me and in good health,” Larson said.
Larson was on a transplant list and a donor was found through that. Transplant preparation was well underway and the donor and Larson were about ready to go through the final compatibility phase. The transplant was to take place on March 26th or 27th.
“My wife and I were on our way home on Saturday, March 2nd, 10:41 p.m. and we received a call. ‘We have a liver for you. Can you be here within the hour?’ I wasn’t ready! Here we were looking more toward the end of the month and they were ready right now,” Larson said recalling the phone call and the couple’s reaction to it.
Tim and Alethea and their family only live about ten miles from the University of Nebraska Medical Center, Omaha, where they had to go for the transplant. “I just asked the person who called us if I could have just one hour to go home, tell the children and pack a few items for the hospital stay.”
“One of the major symptoms of liver disease is that it takes residence in your skin. I woke up from surgery and did not have the urge to scratch,” Larson stated. “In two days, you didn’t even notice any yellowness to my skin and eyes. Within a couple of days, I was up walking the corridors and of the hospital. The surgeon told us it was the largest liver she had ever seen. She said that I was more sick than the Meld Score had indicated. PSC is not heredity. It is an autoimmune disease that they don’t know how it comes to happen.”
Larson was released from the hospital one day earlier than planned because he was doing so well post-surgery. “My incision is healing rapidly, and all of the markers and tests that need to be done following a liver transplant have been trending the right direction. I will be on anti-rejection medicine the rest of my life.”
Previously, doctors had attempted stents in the bile ducts to hold them open. That did not have much success. They had also attempted to balloon the ducts, but that was also not a great success.
For now, Larson will have weekly checkups, which he indicated will soon be moved down to one check-up per month. “After a year, if all goes well, I will have yearly checkups,” Larson said.
During the months prior to surgery, Larson had continued to work. He is a full-time computer programer and also holds various jobs on a part-time basis. “I had just started a new job right before this hit the fan. That is all at a halt right now as I need to let my body heal. I can’t go back to work until I receive an all clear to do so. I am not able to drive at this time.”
When asked if he is still following a restricted diet, Larson said, “They told me I was on an unrestricted diet after the first two days. I am to eat a healthy diet. They did tell me that PSC can reoccur in my body, but that chances of that are fairly low. The disease doesn’t really ever go away. As wild as this trip has been, with all of its ups and downs, my wife has been a real trooper. We would get good news and then you wouldn’t get good news. It was just a real emotional roller coaster.”
Alethea began doing research on ulcerative colitis and PSC, as well as on solutions for a nutritious diet for Tim. She would ask questions of the doctors that Tim did not think to ask. And she was Tim’s encouragement and rock.
“It’s been really tough on the whole family. Alethea had to pick up the slack when I got really sick and couldn’t do what I normally did. She would take me to doctor visits and she was such a help and a blessing,” Larson expressed.
Upon returning home from the hospital, they were greeted by their eldest son with the words, ‘Mom, there’s water in the basement.’ “There sure was! All of that melting snow was funneling into our basement,” Larson confirmed. “Alethea got me settled in at home and then she began calling friends for help. I am so very grateful for all of those who came and helped us. I couldn’t do anything, but those who came dug a trench outside to channel the water away from the house. Someone brought in an industrial floor cleaner to suck up water. Alethea went and got a pump and someone set that up. There were meals brought in. It’s been such a blessing because when you are down in a hole, someone comes along and says ‘I’ll help you up.’ It’s God’s providence.”
Larson shared that the most important thing he and his family have kept in mind is that God is in control. “Faith has sustained us throughout . I find it really hard to fathom how people get through journeys like this without faith. God says that even though the situation will be very tough, He will help us walk through it.”
Tim is a 1991 graduate of Fulda High School. He and Alethea have been married for 18 years. They are the parents of Amelia, age 15; Thomas, age 13; Parker, age 10; Claire, age 8; and Hananiah, age 7.
Besides home-schooling their children, Alethea works as a dresser at the Orpheum Theatre in Omaha.
As Tim will be off of work for several weeks yet, Alethea has established a gofundme page. It can be found by searching www.gofundme.com/our-faith-journey. There is also a Facebook page entitled Our Faith Journey where Alethea kept family and friends informed about Tim’s progress.
Larson encourages anyone who is told that they have elevated liver levels to get in and get it checked. “I had no idea the liver controlled so much of your body’s function. That it being diseased can debilitate your life. A lot of people have a lot more pain than I did with PSC and it keeps them from being able to do things. Just get those levels checked!”
