Beating the Odds of PSC: Austin Muranaka

Medical school is not for everyone. It requires a commitment that is tested daily, by both the large workload and the accompanying stress levels. Now imagine that you’re entering med school just two years after receiving life-altering diagnoses of primary sclerosing cholangitis (PSC) and ulcerative colitis (UC).

Austin Muranaka, now a successful podiatrist in Indiana, doesn’t have to imagine this scenario. He’s lived it.

“I first experienced PSC symptoms in 2000, and I didn’t realize what it was at the time. I was serving a church mission in Australia at the time, so I saw a couple of doctors there, but they kept telling me it was food poisoning,” he said. “After I came home, the pain became so normal for me that I got in the habit of holding my hand across my belly – looking like my arm had just come out of a sling – to try and make the pain a little better.”

In 2003, after dealing with ongoing belly pain and having both blood work and a colonoscopy done, Austin was diagnosed with both PSC and UC.

“There’s no convenient time for a diagnosis like this. My now-wife and I started dating around that same time, and then I both got married and started medical school in 2005,” he said. “My in-laws were seriously concerned after my diagnosis, worried that I was going to die soon, wondering if these conditions were contagious.” 

From the earliest days of his diagnosis, Austin was able to find a medication that helps manage his conditions; it’s been working so well that he’s still taking it today, twenty years later.

“I almost feel bad about this because it’s hard for me to relate to other UC and PSC patients when it comes to medication,” he said. “Those first meds brought my liver enzymes down pretty quickly, and they’ve kept my levels as good as they can be since. I’ve been very blessed in this sense.” 

Austin was only 22 years old when he was diagnosed. At the time, insurance companies were able to remove patients from their health insurance plans after these types of significant diagnoses. He ultimately applied for Medicaid to cover his medication costs because he didn’t have the income to pay for them without additional support.

As medical school progressed, Austin began learning about PSC in his classes.

“The knowledge was wonderful and helpful, but sometimes depressing. The risk of cancer alone, and how likely it is as an end result of PSC, was overwhelming,” he said. “I’ve also always wondered how much better I could have performed in med school if I wasn’t dealing with chronic fatigue and flare ups – there was a time I worried that I’d never be able to do surgery by myself because of these conditions.”

Some of the lessons learned during med school now prove useful when Austin interacts with other people with chronic illnesses. He recommends websites like PubMed as resources for newly diagnosed patients who are looking for up-to-date information about research. He also encourages patients to continue advocating for their own care, especially when it comes to getting additional opinions.

“No doctor knows everything; we’ve just been trained to know more than the average person. So don’t be afraid to get more opinions for your condition because they might offer different insights into what’s available,” he said. “If you have a good doctor, they’re not going to be offended. As a physician, I love it when a patient says they want to get another opinion and I encourage them to have another doctor call me so we can work together to come up with the best solution for that individual.” 

When it comes to his own ongoing well being, Austin maintains routines like eating healthy and exercising regularly. As a member of the Church of Jesus Christ of Latter Day Saints, his wellbeing also relies on his faith.

“My number one support system is God,” he said. “I pray for help every single night. I ask for guidance in how to handle these conditions, and I ask for guidance to find any knowledge that may be out there and could help with my condition.”

As much as he works to maintain a positive mentality, some times can be more challenging than others.

“From diagnosis to liver transplant or death, research shows that a PSC patient has about fifteen years. I’m going on twenty years now,” he said. “This has weighed more heavily on me, now that I’m a husband and a father of four. I’ve never been able to have life insurance, because no one will touch me with PSC. The stress of that, and the fact that PSC is a progressive condition, can lead you down a very dark hole if you allow it.” 

When the more challenging days arise, Austin turns to his wife and his friends, but also turns to some online communities that have proved beneficial over the years. He encourages other PSC patients to look to PSC Partners for both research and community, and thinks that anyone with a chronic condition can benefit from Ben’s Friends, too.

Now 42 years old, Austin approaches every day with gratitude.

“I don’t know what’s going to happen in the future with my PSC, so I live my life the way I want to,” he said. “I don’t want to worry my life away. Instead, I want to raise my kids, provide for my family, travel the world with my wife, and eventually visit my grandkids.That’s the motivation that I keep in mind when I’m exercising or eating healthy: I want to be as strong as I can for as long as I can, and I won’t let my conditions keep me from living my best life.”

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