Lisa Niemi, wife of Patrick Swayze, knows a thing or two about being vigilant when it comes to caring for a terminally ill patient, especially when visiting doctors.
"For all of my husband's illness, I'd remember things he had forgotten. He thought he lost his appetite, but I said, 'No honey, that isn't the way it worked," Niemi tells "Extra." "I had lists. I had the medications. I knew just how much he needed, the what, when, where and why."
She continues, "I was an advocate for Patrick because I didn't know any other way to be. But during that time, I learned that getting the right help involves asking the right questions, and sometimes that's the hardest thing for the patient to do."
Now Niemi is using those skills as a special "Extra" Lifechanger, helping a young woman, Krissy Kobata, deal with a serious blood disease called MDS.
"My bone marrow is not producing healthy cells," Kobata explains. "It will either fail eventually or turn into leukemia."
What Kobata needs is a bone marrow transplant, so Niemi went with her to meet the hematologist to help her sort out all the details. "I'm not necessarily the tough question asker," Kobata says. "I'm usually the one in the office who is just nodding along because it is overwhelming."
Niemi's advocate check list includes: 1) prepare questions in advance; 2) take notes during doctor visits; 3) be vocal about any changes; 4) don't be afraid to be your OWN advocate!
Kobata is optimistic about it all. "Taking it one day at a time really helps, and surrounding yourself with people who are positive and want to help and are supportive. That's incredibly empowering for a patient because you feel like, 'Okay, I'm not on this on my own. I've got a whole team behind me.'"
Becoming a bone marrow donor isn't as complicated as it used to be. Getting tested can be as simple as swabbing inside your cheek. Could you be the match for Krissy?