Steamboat Springs resident encourages others to join marrow registry
February 5, 2013
Steamboat Springs — Amy Minotto has some prospects for a marrow transplant. Luckily, her ethnic background is well represented on the donor registry, and there are a few leads.
Typically, the best marrow matches are relatives, but when Minotto was first diagnosed with a rare blood disease, her sister turned out not to be a match.
So when the Steamboat Springs resident was diagnosed with a second rare blood disorder in November, she went to the registry.
But it's like "pressing on the gas and then pushing on the brakes," she said a coordinator told her. The registered donor still has to agree, and further screening needs to be done.
It will take a few weeks to find out for sure, Minotto said.
As she hopes for a long-term solution for her conditions, Minotto now is looking to make sure others in need of marrow transplants can find a match.
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Routt County residents between ages 18 and 44 have the opportunity to join the National Marrow Donor Program when Bonfils Blood Center visits Yampa Valley Medical Center from 12:30 to 6 p.m. Thursday.
The process can be as simple as having the inside of a cheek swabbed, and it has the potential to help someone like Minotto.
The chances of her neighbor being a match are slim, Minotto said, but stranger things have happened.
Severe aplastic anemia affects about 3 out of 1 million people each year in the United States, according to the National Marrow Donor Program.
Paroxysmal nocturnal hemoglobinuria affects about 1 to 2 people per million, according to The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Medicine.
In 2009, Minotto was a new mother. Her daughter, Eva, was just born, and she thought she was suffering from the fatigue of caring for a young child while still working. Her husband, Jeff, is a commercial banker at Wells Fargo in Steamboat.
She always had been active before that time.
"I used to love to ski, bike and run," Minotto said. "I wasn't super competitive, but I loved competing."
The Steamboat Triathlon that year was such a struggle for her that she went to get her blood tested.
Minotto was diagnosed with severe aplastic anemia and immediately sent to Denver for treatment.
"You just don't realize how sick you could be," Minotto said. "It came out of the blue."
When her sister was determined not to be a marrow match, immunosuppressive therapy was prescribed, and Minotto made a partial recovery.
In November, Minotto was diagnosed with paroxysmal nocturnal hemoglobinuria. For now, the drug Solaris treats the symptoms of the disease, but a marrow transplant is the only curative solution.
"The waiting game is what's hard," she said. "It's something you have to live with."
But while it's looking optimistic for her to find a match, Minotto said, those from backgrounds underrepresented on the registry have more trouble finding donors, and their mortality rates are higher.
"That's why there is a real need for people to join the registry," she said.
Those interested in joining the registry can stop by Thursday to talk with a coordinator. A registered donor always has a choice when being contacted about a match. Often, the donation is of stem cells from blood and doesn't require extracting bone marrow from a hip. The process always is free to donors, but the program does rely on financial contributions.
"It does save people's lives," Minotto said.
The goal is to have her own donor matched by March or April, which will be followed by a months-long recovery period in Denver.
Minotto said she's thankful for the staff and physicians at Yampa Valley Medical Center, where she works part-time for Integrated Health. The area is lucky to have the cancer program at YVMC, renowned specialists like Dr. Robert Rifkin and the care of people like Jan Fritz, she said.
"It is touching to see the amount of support from family and friends and the community," Minotto said.
To reach Michael Schrantz, call 970-871-4206 or email mschrantz@SteamboatToday.com