By Elena Ferrarin
Adam Rubinberg is hiking the circa 2,650-mile Pacific Crest Trail, a daunting undertaking for most people, while managing two currently incurable diseases.
The 25-year-old from Skokie set off March 8 to hike the trail spanning California, Oregon and Washington, starting from the Mexican border and hiking north to the Canadian border. His mother Amy Rubinberg said Monday he may be returning home as soon as Sept. 25, partly due to wildfires in the West and partly due to a health setback.
He’s hiked between 12 and 25 miles per day, depending on the terrain and how he’s feeling, carrying a backpack weighing about 30 pounds, he said earlier in a telephone interview from a town near the trail where he stopped to get an IV infusion.
Rubinberg has Crohn’s disease, a type of inflammatory bowel disease estimated to affect more than half a million people in the United States. He also has primary sclerosing cholangitis, a rare disease that attacks the bile ducts. About 50,000 people in the United States have PSC, and the majority also have inflammatory bowel disease, according to information from UChicago Medicine, where Rubinberg is being treated.
Rubinberg takes 17 pills per day — most for PSC, some for mental health issues like ADHD and depression, he said – and battles occasional flare ups of back pain.
To treat his Crohn’s disease, he has to make a stop every four weeks to get an IV infusion. There is no FDA-approved treatment for PSC, which claimed the life of Chicago Bear great Walter Payton in 1999. However, Rubinberg is participating in a two-year clinical trial that started in October 2020 at UChicago Medicine to evaluate the efficacy of the medication cliofexor on PSC patients. Because it’s a double-blind study, neither Rubinberg nor his doctors know if he’s taking the medication or a placebo. Rubinberg said he feels much better, and his liver enzymes have been within the normal range since late last year.
“I’m very fortunate to be in such good hands,” he said during a telephone interview a few weeks ago from Dunsmuir, California, where he got an IV infusion.
“The fact that I am still out here, after all that’s happened to me — that alone says a lot,” he said. “Some days I want to quit, but I won’t do it unless I feel that way consistently for a week. Other times, I feel intensely happy and grateful.”
Rubinberg was diagnosed with both diseases in 2019 after he took a blood test at the insistence of his mother, who noticed his exhaustion and loose bowel movements. His elevated liver enzymes led to more tests before the final diagnoses.
Rubinberg is a “remarkable young man,” said Dr. David T. Rubin, co-director of the Digestive Diseases Center and section chief of gastroenterology, hepatology and nutrition at UChicago Medicine.
Crohn’s disease is often diagnosed in young people, and about 10% of patients also have inflammation in their liver and bile ducts, Dr. Rubin said. It’s unknown if one causes the other, and treating one doesn’t guarantee the other goes away, he said.
The medical field has made “incredible progress” in treating Crohn’s disease, so that patients should expect to be in remission, he said. “They should be able to do anything and everything they’ve ever wanted in their life.”
Dr. Rubin also credited nurse associate Jaqueline Lopez, who went “above and beyond” to help Rubinberg in his quest to hike the Pacific Crest Trail. Lopez found the company Home Infusion Options, which worked with Rubinberg’s family to ship his medication and hire traveling nurses who administer the IV infusion in the homes of “trail angels,” people who lend their homes to help hikers along the route.
Dr. Gautham Reddy, a liver disease expert at UChicago Medicine, is overseeing the clinical trial that will end in October. Rubinberg plans to enroll in an optional “open label” study extension, where he will be taking the medication, Reddy said.
“At the onset of trial, he was not feeling well. He was run down, fatigued. He just felt ‘blah,’” Reddy said. “Now, his general disposition is much sunnier. He seems like a happier, more energetic young person.”
“I am so happy to hear that he is super functional and able to do the things that he wants to do,” Reddy added. Still, he cautioned about making assumptions about the potential benefits of the medication until the clinical trial data is available.
Hiking the Pacific Crest Trail had been Rubinberg’s dream since 2018, Rubinberg said, crediting his parents and medical team with managing the complex logistics.
In preparation, he hiked Vermont’s 273-mile “Long Trail” last September. That’s where he earned the trail nickname “Bard,” after he rewrote the lyrics to Bob Seger’s “Turn the Page” as an ode to that trail, he explained.
To help finance his current hike, Rubinberg took a weeklong break in July to work at a golf tournament in South Lake Tahoe, California.
The best part of the journey has been meeting “amazing people,” said Rubinberg, who’s written entries in a blog.
“Hikers are some of the nicest people you’ll meet. The most trusting, most trustworthy people,” he said. “With the trail angels and the trail community out here, it’s one of the best communities of people you’ll ever meet.”
The hard part is that, because he has to stop every four weeks, he also has to separate from hikers he meets along the way, he said.
“Being alone on this trail is a whole mental challenge, because the only person to motivate you is yourself,” he said. “It’s kind of redefined for me what my limit is. Physically and mentally, it’s pushed me to, and beyond, my limits.”
There also have been major glitches, like having to be medically evacuated, twice: once in May due to altitude sickness on Mount Whitney, California, and once in July, when he had a 102- degree fever and was diagnosed with COVID-19. He spent a few days in isolation at a hotel in South Lake Tahoe, where his mother was able to send him groceries.
“Thank God for modern technology,” Amy Rubinberg said.
Last week, nausea and throat issues forced him to backtrack 10 miles to Snoqualmie Pass, Washington, where he had to get transportation to the nearest medical center for blood work his doctor ordered, Amy Rubinberg said. He’s taking an antibiotic because, she said, PSC can lead to infections in the liver that can in turn lead to serious consequences.
Rubinberg also has a propensity for losing stuff, like his satellite messenger, a device for communicating with the world beyond the trail. He thinks he dropped it at a park after a sprinkler unexpectedly went off, he said, laughing. That was less funny to his parents, who rushed to buy him a new one and ship it to his next IV infusion destination while enduring the stress of not knowing where he was for a few days.
Amy Rubinberg said she worries about her son constantly, but she and her husband are both very proud of him and his determination.
“With all of these trials and tribulations, there are a lot of things that could have made someone else give up and quit. But he kept persevering and kept going,” his mother said.
His father, Robert Rubinberg, agreed. “Even before he was diagnosed, it certainly seemed like a huge dream (to hike the Pacific Crest Trail),” he said. “He’s very driven. He’s wanted to do this for a long time, and he has been able to push himself.”
Rubinberg worked at REI’s store in Northbrook for about five months before he set off on his hike in March. He hopes to work there again and perhaps apply to become one of the company’s outdoor guides, he said.
He encourages everyone, regardless of their physical condition or ability, to go hiking.
“Doing any distance, on any trail, in my mind is impressive,” he said. “It doesn’t matter if you do the whole thing or not. Just getting yourself out there and enjoy nature — it’s amazing what it can do for you.”