Aplastic anemia diagnosis took business strategy manager by surprise

Owen Ho rides bike — Owen Ho rebuilds his strength after his aplastic anemia diagnosis and treatment. Photo by Robert Hood / Fred Hutch News Service

On the surface, Owen Ho looked fine. But on the inside, it was a different story.

Ho, 42, was exhausted. He couldn’t muster up the strength to exercise even though months earlier, six-hour bike rides were his norm. His platelets were low, his white blood cell count plummeting. He started to notice that he bruised easily. Then his gums began bleeding and he experienced headaches, which led to a brain bleed the size of his palm that landed him in the hospital intensive care unit in September 2022 for five days.

No one seemed to know what was wrong with him. “I had my will ready,” said Ho, a senior business strategy manager at Microsoft.

Ho made an appointment with Maria Cristina Ghiuzeli, MD, a hematologist-oncologist at Fred Hutch Cancer Center, who diagnosed him with severe aplastic anemia, a disease caused by failure of the bone marrow to produce blood cells. People with aplastic anemia have low platelets, hemoglobin and white blood cells. Some hereditary syndromes such as Fanconi anemia can be associated with aplastic anemia, but Ho didn’t have any of those syndromes.

“It was just bad luck,” said Ghiuzeli.

With a diagnosis in hand, the next decision was how to treat his condition. Doctors agree that patients under 40 should receive bone marrow transplants to replace the diseased marrow with healthy marrow. But transplants are hard on a patient’s body; they can trigger graft-versus-host disease, which causes the transplanted cells to attack a transplant recipient’s tissues.

As a result, transplants are not typically recommended for patients older than 40, who are often treated instead with immunosuppressive therapy — a cocktail of drugs combined with platelet-stimulating medication and steroids. Ho was 41.

“Owen was on the border,” said Ghiuzeli. “In general, due to the toxicity associated with transplant, we want younger patients.”

Yet a transplant can be curative as opposed to immunosuppressive therapy, which treats the condition but doesn’t eradicate it. Since Ho was close to the age recommendation, Ghiuzeli decided to proceed with transplant, which is the gold standard for blood cancers and other blood-related disorders.

“This is not cancer,” Ghiuzeli said. “It’s an autoimmune bone marrow failure.”

Searching for a transplant donor

Ho didn’t match with his sibling, so his care team searched for an unrelated bone marrow transplant donor as they prepared to replace his compromised bone marrow with a donor’s healthy marrow.

He spent more than 30 hours a week in the hospital, receiving blood transfusions to stabilize him and replenish his platelets as the search for a donor proceeded. Ho is Taiwanese, which made the process of finding a donor more challenging. Minorities are underrepresented on the National Marrow Donor Program registry, which pairs donors with recipients based on human leukocyte antigen (HLA) markers. These markers are inherited genes, making it more likely to find a successful match among people who share the same ethnic background. Luckily for Ho, a suitable donor was located — a 30-year-old Asian woman — and his transplant was scheduled for December 2022.

The transplant wiped him out, both literally and physically, replacing his damaged blood cells with healthy ones from the donor. Ho said his wife, Evelyn Chiang, was key to his recovery — driving him to medical appointments, cooking, taking care of their baby daughter, doing everything. “I wouldn’t be alive without her helping me,” he said.

Post-transplant, he felt exhausted, barely able to log 1,000 steps a day. But he’s worked steadily over the past year and a half to increase his strength and fitness, biking short distances and running slowly.

“It’s the consistency of the exercise that really paid off in the long run,” he said. “It’s the baby steps each day that helped me.”

‘Open conversations’ about disease treatment

He’s also shifted how he thinks about the meaning of life in general.

“I focus on things I find purposeful and meaningful,” Ho said. “I’m more thoughtful about what I say yes to, and I focus my energy on what I have control over.”

That attitude stems in part from Ho’s relationship with Ghiuzeli. “She understood the urgency of my situation,” said Ho, who appreciated that Ghiuzeli had what he calls “open conversations” with him about how to treat his disease. They discussed the trade-offs and aggressiveness of his treatment options, which Ho says made him feel he was an important part of the decision-making process. “She always gives me a reason why she thinks something may work versus another approach and communicates it in a way that makes me feel comfortable.”

In remission now, Ho sees Ghiuzeli regularly for check-ups. Although “cure” is a word that doctors tend to avoid using, Ghiuzeli says Ho’s transplant was successful, leaving no evidence of aplastic anemia.

Ho says he’s back to 90% of his energy level, which is putting him on the path to resuming his long-distance cycling hobby in preparation to be Microsoft’s co-captain for Obliteride, Fred Hutch’s annual bike ride and 5K walk/run fundraiser.

For now, he’s happy to be able to hug his three-year-old daughter and even happier that there’s no need to continue the journal he started during his treatment with musings for his daughter “in case I didn’t make it.”

The NMDP (National Marrow Donor Program) registry, formerly known as Be the Match, is always seeking donors. Learn more about joining the registry.

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