By RYOKO NAKAMURA
RAFU JAPANESE STAFF WRITER
The fourth in a four part series.
Like most Californians, San Jose native Matthew Nguyen was a health-conscious, vibrant young man who had been taking good care of himself by exercising and eating nutritious foods.
In 2006, while attending a pharmacy school in Virginia, the 27-year-old Nguyen began noticing strange bruises and allergies that he never had before. He had no idea what was happening to his body, but it turned out to be the first signs of his long, devastating struggle with leukemia.
When he returned to California to intern at Fountain Valley Hospital’s pharmacy, he felt extremely fatigued, and his family noticed that he looked pale.
The night before he was scheduled to start his internship, his nose started bleeding. It wasn’t new to him since he often had nose bleeds as a child. But when it didn’t stop after an hour, he was rushed to an emergency room.
After the blood test results came back, all the doctors, nurses, and technicians suddenly donned masks and he was isolated in a private room. He realized that something was terribly wrong with him.
The test results showed that there were no platelets left in his blood and both his red and white blood cell counts were significantly low. He was diagnosed with acute myelogenous leukemia. He was only 24 years old.
Ironically, he was admitted to Fountain Valley Hospital as a patient, not as a pharmacy intern. For the next 16 months, he underwent five rounds of chemotherapy and suffered terrible infections in his lungs, liver, pancreas, and stomach—but he fought back.
In August 2008, his long battle against the deadly disease was finally over. To celebrate his victory, he participated in a 100-mile bicycling marathon in Palm Springs. He was fully prepared to go back to his life, which had completely stopped since the initial diagnosis.
Three days after he crossed the finish line, he was told that the leukemia had come back.
Transplant is the Only Hope for Survival
“It was very hard to take it all in because I had fought so hard and put everything on hold just to do it all over again,” Nguyen recalled. His doctor was at his side, hugging him. Tears ran down his face.
The only hope for his survival now was a marrow transplant. Although his donor search started right away, it wasn’t easy for a person of Vietnamese descent to find a match because there weren’t many suitable candidates on the Be the Match Registry of the National Marrow Donor Program.
To encourage more Asians to register, his family and friends started a “Team Matthew” campaign in February 2009. Because of their efforts, over 20 potential donors were found and after further testing, they found a perfect match for him. It took four months to find a matching donor.
The Match Disappeared
Nguyen’s match agreed to donate her bone marrow with one condition; the surgery date had to be after August because she was busy. His donor search was called off and for the next two months, he anxiously waited for “the day” to come.
During the wait, he became very sick and almost did not survive. Luckily, he pulled through. By the time August came, he was told that the donor was no longer available to donate.
“I felt like I was trying to wake up from a bad dream,” he remembered.
Unfortunately, it wasn’t a dream. His potential donor was completely out of the registry for reasons that nobody knows. “I was upset at the donor because I thought she was just backing out and was trying to buy time from June to August,” he said, having lost a valuable two months of searching for donors and additional testing time. “But I gave her the benefit of the doubt and just thought maybe she really could not donate for whatever reason. So I stayed positive and just kept hoping.”
His third search began not only in the U.S. but also in Asian countries. As a result, two matches, one in China and the other in U.S., were found. Although neither was a perfect match like before, his doctor gave him a go.
Because of the traumatic experience with his first donor, Nguyen didn’t tell anyone about his new match until everything was done.
“I stayed calm and told myself to only get excited when the transplant day actually comes because the donor could back out at any time up until the day of their extraction,” he explained.
Last fall, the new marrow from a 24-year-old woman was finally transplanted to Nguyen. He now refers to this day as his “second birthday.“
The Battle Against Infections
The most significant risks for a marrow recipient like Nguyen are infections and rejection. He was no exception. He suffered from itchy skin, dry skin, darkening of his skin, irritation in his mouth, and overall mood changes. The biggest source of discomfort was the irritation in his mouth.
“Every time I eat I get these blisters that form and stay for a few hours. It has made eating a chore and no longer enjoyable.” Although he feels better now, he is much more sensitive to colds and weather.
The countless rounds of chemotherapy, the cancer recurrence, his first match disappearing, and the numerous infections after the transplant…. How did he find the strength to endure this?
“My family and friends kept me going,” Nguyen said. “They were there for me everyday and helped me with everything. I never ever once thought I would give up. It was never an option.”
Every time he sees people registering he thinks, “I knew there was a possibility that I could not find a match, but if our efforts help just one person live, then I am happy with that.”
It Could Happen to Anyone
He lived a cautious and careful life by exercising and eating healthy. “I’d like everyone to know that this disease can happen to anyone,” he advises.
Ten years ago, Nguyen even helped A3M by registering as a donor. “Ironically, 10 years later, I was the one who needed a matching donor. So I want people to know this could happen to anyone anytime. We need to be prepared and have everyone registered to be a donor so when that time comes, a person can find their match right away.”
He emphasizes that the amount of time and discomfort that accompanies donating is very minimal to what it actually means to a dying person. “People can save lives from this and I am living proof that A3M and Be the Match really do work,” he said.
Nguyen is looking forward to meeting his donor. “All I could say is thank you because there are no real words that can explain how I feel. She saved my life.”
What is he looking for in his new life? “I am just looking forward to living my life like everyone else. I want to grow old with my family and friends.”
To read more of Matthew’s story, go to www.teammatthew.com. For more information about bone marrow transplants, call A3M at (213) 625-2802 ext. 103 or visit www.A3Mhope.org. You can also find more information at the National Marrow Donor Program at www.bethematch.org.