Caregiver stories: Megan O’Brien

When Megan O'Brien began searching for information about polycythemia vera (PV), she kept running into the same problem. Every article, statistic, and patient story seemed to describe someone decades older than her husband. Months earlier, a severe headache sent him to the hospital, where doctors discovered a blood clot in his brain that had likely gone undetected for some time. He was 25 years old. Follow-up testing uncovered a JAK2 mutation, and a local hematologist started him on hydroxyurea. 

Megan immediately began researching, trying to understand the disease, the available treatments, and what options might exist. The more she read, the more she realized she wasn't simply looking for information. She was searching for people who understood what they were experiencing.  

As the weeks passed, Megan found herself taking the lead on understanding a disease neither of them had expected to face. While her husband focused on getting through each day, she focused on finding answers. "I feel like I took on the role of doing the research and digging in and trying to learn more," she says. "He already just wasn't feeling good, like at all, constantly, every day." Her research quickly shifted toward treatment. Hydroxyurea was presented as the next step, but she wondered whether other options existed for someone diagnosed so young. "There's got to be a better way," she remembers thinking. 

The deeper Megan dug, the more she realized the answers she needed weren't coming from medical websites alone. They were coming from other patients. "What I was really looking for was other young people," she recalls. Through Facebook groups and online forums, she found people willing to share their experiences with treatments, side effects, and life after diagnosis. One recommendation surfaced again and again. "Everyone was like, 'You need to get to an MPN specialist. Make sure you talk to an MPN specialist. That's where you're really going to get answers.'" The advice reinforced what Megan already suspected. Their search for a specialist eventually led them to MD Anderson Cancer Center, where her husband underwent additional testing and received his official PV diagnosis. A referral connected them with an MPN specialist at UT Southwestern, where he continues to receive care today. 

While a diagnosis brought clarity, it did not provide immediate relief. Over the next several years, her husband transitioned from hydroxyurea to Pegasys and eventually to Besremi. Each change came with new questions, new side effects, and more waiting. During that time, he dealt with fatigue, medication adjustments, and elevated liver numbers as his body adapted to treatment. There were periods when progress felt difficult to measure, and the future remained uncertain. "When you're in it, it's like, my God, I'm always going to have these side effects. Like it's never going to get better," Megan recalls. Looking back now, she sees that treatment was never a single decision or turning point. It was a process that unfolded over time. "It probably took from his hospital stay, probably like two years for him to really feel better." 

It was conversations with other patients helped put the setbacks into perspective. Many shared stories about the difficult first years after diagnosis and the patience required to find a treatment plan that worked. "A lot of people had said once they got through the initial years of being diagnosed and getting on a medication, it was a pretty normal lifestyle," Megan says. Those conversations provided something she was searching for from the beginning: a realistic picture of what life could look like beyond the diagnosis. 

As the side effect stabilized, Megan's attention shifted toward the research driving future advances in MPN care. Through her involvement with MPN Research Foundation and the Patient Education and Advocacy Committee (PEAC), she gained opportunities to learn more about the science behind the disease. Attending MPN Research Foundation's MPN Roundtable™ offered a fresh perspective. Listening to researchers discuss emerging science and potential future treatments gave her a firsthand look at the work happening behind the scenes. "This is really cool," she recalls thinking. "This makes me feel so hopeful." 

Today, life looks very different from those early days after diagnosis. Her husband remains on Besremi, with well managed symptoms, and many of the fears that once dominated their conversations have faded into the background. They travel, spend time with friends, and continue making plans for the future. Through her work with PEAC, Megan hopes to help other patients and caregivers find the support and perspective she once struggled to find, and the confidence to build a full life after diagnosis