After waiting and searching for over 10 years for a bone marrow match, Krissy Kobata, 40, was finally readying for her transplant when she faced another devastating blow. Her donor, her older brother Randy, was deemed too risky a match because of an autoimmune disorder he had been diagnosed with decades before.
“He was devastated,” said Krissy, who was diagnosed with the blood disorder myelodysplastic syndrome (MDS) when she was 25. “He cried on the way home. He’s my big brother, he’s always taken care of me. He wanted to be the one to save my life.”
Krissy’s doctors at City of Hope had monitored her condition for years and knew that she could not wait any longer for a bone marrow transplant. However, being of mixed race (Japanese and Caucasian), Krissy had been unable to find a match, despite fundraisers and social media outreach. (Just 4 percent of those on the bone marrow registry are of mixed-race background.) Her brother had been her last hope.
However, an unrelated donor had popped up for Krissy on the Be the Match bone marrow donation registry in 2011. Back then, technology wasn’t good enough to make that person a decent match. But now, with Krissy’s disease clearly progressing, her bone marrow advisory panel at City of Hope recommended she go with this donor. A new protocol would reduce her chances of developing graft-versus-host disease.
The donor was contacted and agreed to be Krissy’s donor. There were more delays while the donor went through all the necessary tests and screening. “I was getting sicker and sicker,” Krissy said. Finally, Krissy began the transplant procedure in late 2017.
The new bone marrow transplant protocol consists of three days of chemotherapy on an outpatient basis. Next, the patient gets full body radiation twice a day for four days. Following that, the patient is infused with their newly donated stem cells.
After three days in which doctors watch for any signs of rejection, patients are given a powerful chemotherapy drug “that really knocks down your immune system,” Krissy said. “Then they put you on all these anti-rejection, antiviral and antifungal drugs and you just see how it goes. Every day, they take your blood and you’re waiting to see the counts uptick. It took about 10 days for mine to start moving. It’s the best feeling when you start to see that one number move up. You’re like, 'Oh my god, it’s working!'”
“Fortunately for me, everything started to move in a positive direction,” said Krissy, adding that her complications from the transplant have been minimal. "The radiation was the hardest thing I’ve ever gone through physically.”
Krissy remained hospitalized for almost four weeks following the transplant and went home just before Christmas. She went to City of Hope for rechecks twice a week after that. Once she passed the 100-day mark, she went in once a week, and then less frequently as time passed.
“My body’s still trying to figure out how to live with this other DNA, essentially,” Krissy said. “A lot of transplant patients, for the rest of their lives they may have certain things come up."
Full recovery took about a year, Krissy said. That’s a special milestone, because after a year, transplant patients are allowed to meet their donors.
“Hopefully she’ll want to meet. I’m really looking forward to meeting her,” Krissy said. “It’ll be a long conversation that I’ll be looking forward to having — hopefully imparting to her what an incredible gift she gave me. I’m going to be nervous.”
Joining the bone marrow donor registry is easy. You must meet some health requirements and then make a conscious decision to help someone in need. The process starts with a swab of the inside of your mouth and some paperwork. You have to be between the ages of 18 and 44 to register. If you are between the ages of 45 and 60 you may still register, but you have to do so online at BetheMatch.org.
For her part, Krissy is relieved the process is finally behind her.
You just take it every day, hour by hour,” she said. “I’ve been really lucky."