How you can give yourself a chance to save another’s life
Few things could start out so simple and yet maybe lead you to save a life. But one woman’s firsthand experience led precisely down that road, and now she’s getting more people on board.
Be the Match is a program offering free kits for people to submit their DNA through mouth swabs to see if they might one day be a match to donate to someone with blood cancers or other blood-based diseases.
And getting that opportunity is about to become even easier for those in the Roaring Fork Valley this coming First Friday (May 5) and then on Dandelion Day (May 13) in Carbondale.
Erica Borum, who works as a civil engineer for the White River National Forest, is setting up a Be the Match booth at these events, where she’ll have registry kits with mouth swabs ready to be used and sent off.
This first step is simple. If you’re between 18 and 44 you can participate, but this first step doesn’t mean that you’re automatically going to be donating to someone.
Your mouth swab puts you on a DNA registry. Once your DNA is on the list, that information is available to doctors looking for donors who match with patients in need for stem cells or bone marrow.
According to Be the Match, each year about 14,000 patients are down to one option for a cure: a transplant from someone outside their family.
Borum is pushing this effort in Carbondale after her own experience a little more than a year ago donating to a man with Hodgkin’s lymphoma. She wants to give people this opportunity by bringing the kits to them, but she’s also on a mission to demystify the process.
“When people are first addressed with it, it’s strange and weird and not something that would be of interest,” she said. “I’d like to help make it not so foreign.”
Borum first heard about this donation process through a friend, who knew of someone needing a bone marrow transplant for leukemia. The patient was down to her last option, but in the end the procedure worked out for her.
Borum got online and started doing her research on the organization Be the Match.
The chances that you’ll be selected are actually quite slim. This isn’t as simple as finding a person with matching blood type. Because doctors are looking for someone with highly specific blood markers and other characteristics to give the patient the best shot possible for a good transfer, only about one in 430 people end up being suitable match, she said.
There are two types of transfers: a transfer of peripheral blood stem cells or a bone marrow transplant. Ultimately, the patient’s doctor choses which route to go, so donors need to be willing to do either.
Donating blood stem cells, which is what Borum did, is a bit like an extended blood draw.
“The first thing to know is my phobia is needles,” said Borum. “But knowing that phobias are completely illogical, I went ahead and sent off my swabs. And there wasn’t a great chance that I would be a match anyway.
“The prospect of going through a process that’s a little uncomfortable for the benefit of saving someone, it’s kind of overwhelming,” she said. “To be honest, I didn’t give it a second consideration, despite the phobia.”
She joined the registry in 2013. The mouth swab process took only about 10 minutes, she said.
A little more than two years later, Borum got that call that she was a preliminary match. Did she want to proceed with the process?
Even agreeing at this point isn’t the final say in whether you end up donating. First, Borum had her blood drawn and sent off to reinforce that, yes, she was a match. And after that was confirmed she had to get a physical and undergo some pathogen testing, a chest X-ray and some additional testing to make sure she was healthy.
During this process, the identity of the patient is guarded. All Borum was told was that the patient was a 56-year-old man with Hodgkin’s lymphoma.
From there it was a repeated process of “test and we’ll let you know, test and we’ll let you know,” she said.
‘ONE POKE AT A TIME’
And as each of those came back good, they check to see if you want to proceed. The donor can pull out at any time. But while the donor is going through this process, the patient is going through a parallel preparation of intensive chemotherapy trying to kill as much of the cancer as possible before the transplant.
This is a critical stage for the patient, and if the donor opts out now, it could be life-threatening for the patient, she said.
“I took it one needle poke at a time.”
Leading up to the final blood draw, Borum was given several injections of a drug to boost her cell count to help doctors withdraw the stem cells they were looking for.
On the long end, physicians say the blood draw process could take up to six hours. That was their prediction for Borum, who is more petite. During that draw, they run the first samples to a lab to confirm they’re getting the right concentration. Borum’s body reacted well to the blood cell-boosting drug, and the final process ended up only taking four hours.
To explain her motivation to go through with this procedure, Borum said it’s part of her spiritual practice.
“I did it as part of the practice, and recognizing that a lot of things we do are self-referential and self-serving. And I don’t think there’s a ton of benefit in that, for myself and for others.
“I think the quote from the Dalai Lama goes: If you want others to be happy, have compassion; if you want to be happy, have compassion.
“And it’s all a matter of statistics. If there are more people in the registry, it’s more likely someone will have a match. If I can benefit one person, it’s little effort on my end to try to boost the numbers.”
Because of the statistically low chances of finding a match, getting more people on the registry is essential. And the first month or two after the final transplant is a time critical to find out whether their new blood stem cells are working. This doesn’t always have a happy ending, said Borum.
But in her case, it did.
BUILDING A BOND
Her transfer was a little more than a year ago. About two months afterward she got word that her cells were successfully making the patient’s blood and he had no sign of cancer cells. The patient, who Borum learned lives in New York, sent her a thank you card a few months later, and recently they’ve exchanged emails.
And in those exchanges, she got her first glimpses into his life.
“I am a husband of 28 years and the father of two boys and was facing a difficult future,” he wrote in April of last year. “I am overwhelmed beyond words with this gift you have given me. Please know that I will live the rest of my life with the warmth of your generosity and will do my best to extend it to others in need.”
“His email said that he’s now been healthy for one year and two months,” said Borum. He’s also offered to come to Colorado to meet Borum and thank her in person.
His sickness had taken him to a point where walking was a very difficult task, but now he’s running again.
The whole process, they say, is about 20 to 30 hours of your time, usually spread over about four to six weeks, according to Be the Match.
“I think that’s a small sacrifice to potentially save someone,” said Borum.
The patient in this case wasn’t available for this article – but for pretty much the best reason ever.
Borum said that after being too sick for so long, he was finally leaving for a long-awaited vacation.