April is Donate Life Month
(Spring is a time of new beginnings, and April is the perfect time to donate life. There are a lot of great organizations, whose mission is to help others in need, that celebrate their cause in the month of April. In the next couple of weeks, we will honor the “Donate Life” organization and the “Be the Match” organization. We will be featuring the story of two local people who have donated a part of themselves to give someone else a chance at life.)
By Deb Kroon
Review Staff Writer
For the past eight years, Physician Assistant Stephanie Kroon has taken care of patients in the Cancer Care Center at Regions Hospital in St. Paul, MN. She works with patients receiving chemotherapy, having a follow-up check up or needing urgent care for side effects. Since she works in oncology, Stephanie is familiar with an organization called “Be the Match.” This organization manages a bone marrow registry that matches donors and recipients for bone marrow transplants.
In August of 2016, some of Stephanie’s colleagues organized a “Be the Match” drive in the cafeteria at Regions Hospital. Stephanie decided to volunteer. Signing up was the easiest part. There was paperwork to fill out and four swabs of the inside of her mouth were taken. With these steps completed, Stephanie was listed in the National Marrow Donor Program.
The swab sticks from Stephanie were run through a series of tests and a Human Leukocyte Antigen (HLA)-typing was done. HLA typing is used to match patients and donors for bone marrow or cord blood transplants. HLAs are proteins or markers found on most cells in your body. Your immune system uses these markers to recognize which cells belong to your body and which don’t. If you are a “match” to someone, your tissues are ‘immunologically compatible’ – your immune system may accept them into your body.
On the other side of the picture, you have a patient who has AML (Acute Myloid Leukemia). AML is a cancer of the bone marrow. Your bone marrow is responsible for producing stem cells and platelets that are essential for healthy blood. AML is a cancer that can not be cured with chemotherapy. The patient’s doctors begin to look for blood marrow donors among family members. If there is no match within the family, their information is entered into the registry to see if a match can be found.
For the next year Stephanie received e-mails and newsletters from “Be the Match” keeping her informed. In September of 2017 she was contacted and told she was a possible match. “One thing they kept asking throughout the last year was if I was still interested in donating. They want you to be positively sure you want to proceed,” Stephanie said.
The next steps for Stephanie was an in depth health history, physical and a complete blood work up. “They wanted to know my health history, where I had lived, my travel history, everything that could possibly have an effect on my health. If I had been overseas in certain areas of the world, or if I had any surgery in another country, I would have been rejected. The doctors need to absolutely rule out any risk of infectious disease or any genetic disease.”
The doctors look at all the potential matches and if they determine you are the best match, they reach out again. “In mid November I was contacted again and asked once more if I was still willing to proceed.” She assured them she was and the ball started to roll.
The next step in the process is to get the recipient ready. Chemotherapy is given trying to get the disease into remission (even though it’s temporary) before the transplant. This can take months, depending on the patient. For Stephanie’s recipient it was a couple of months.
The first week of January, 2018, the doctors picked a date for the transplant and Stephanie was contacted again. Again she was asked if she was still willing to donate. They really want the donor to be committed.
“They did the blood testing again, as the tests are only good for three months and it had been longer,” said Stephanie. “I had to undergo an extensive physical. They double check everything, for the recipient’s sake as well as mine to be sure I could get through the donation process. If the doctor approves, it’s a go.”
The recipient then undergoes the last round of chemo just a few days before the transplant. This is an intense round that is to wipe out all the bone marrow. The recipient needs the transplant within 48 hours, or they will surely die with no immune system at all.
Five days before Stephanie actually went in for the donation, she began a series of shots (she gave to herself) of neupogen injections. This is designed to stimulate the growth of stem cells and white blood cells within Stephanie’s bone marrow. When your body naturally produces the cells, they are put into the blood system by your body. Because Stephanie was producing more than normal, the cells were building up quicker than her body could place them, so they built up inside her bones, causing pressure. By the end of the five days, Stephanie’s bones hurt all over and she was very tired. “This gave me a new perspective on how much pain my patients are in,” she stated.
“The fifth day of injections is donation day,” Stephanie explained. “I gave myself the last injection and then went to the apheresis center.” Apheresis is a medical technology in which the blood of a person is passed through a machine that separates out one particular element and returns the remainder to circulation. This was Wednesday, February 7th. “I had an IV in one arm and a needle in the other,” Stephanie said. “I was hooked up to machines that removed the blood and separated the blood cells. Only 500cc can be removed at one time. They take the stem cells they need and put the rest of the blood back in. They would then repeat the process. It took seven hours.” She went on, “After they had gotten the amount of stem cells they needed, I was released to go home. They told me that about 50% of the people who go through this process are able to go back to work the next day. 90% are back to normal in a week.”
Well, she wasn’t part of the 50%. She woke up the next morning and wasn’t able to get out of bed. “I was so dizzy I couldn’t stand. After some time passed, I was able to stand up, and hanging onto the wall I was able to get to the stairs (she has two dogs that needed to go out). I sat and slid down the stairs. I literally crawled on hands and knees back up the stairs and went back to bed. I couldn’t believe how awful I felt.” After waking up again, she called in to the center and talked to a nurse. She was told that filtering her blood caused an acute drop in her hemoglobin, and that it her reaction wasn’t unusual. It took three days before she felt like her normal self again.
We talked about her recipient. All she knows and will know for at least a year is that her match was a 58 year old female. She could be anywhere in the world. Any communication, including updates on the recipient, go through Be the Match. She will receive her first update at the six month mark. All communications are read before being sent on. Things are kept totally confidential. At the end of a year, both Stephanie and her recipient can sign release forms if they wish, so they can get in touch.
Stephanie will be taken off the ‘active’ donor list for this next year. She remains on call for her recipient in case something more is needed. After the year is up, Stephanie intends to become an active donor again. “I will definitely do this again,” she said. “It was quite an experience, but I encourage others to sign up. For what the patients go through, I mean their lives are at risk, the discomfort I went through was pretty minor and definitely worth it. Just think, I am giving someone a chance at life again.”
Her story will be used to promote another drive at Regions Hospital in May. She is hoping her experience will convince someone else to sign up. Stephanie, along with the team of doctors, nurses, pharmacists, medical assistants, nurse practitioner, and one other physician assistant that she works with, knows what these cancer patients go through daily. They can not explain how much they love their jobs and the dedication they are willing to give to these patients, 24/7 if need be. Her final comment was, “The neat thing about this is that I actually take care of someone else’s recipient before and after their transplant. I pray that my recipient does well and I can have the chance to meet her and talk to her in a year. I encourage anyone who is even thinking about being a donor to go for it. Someone’s life may depend on you.”
For more information on how you can get involved and become a bone marrow donor, go to the website bethematch.org. Everything you need to know is listed and how you can get in touch. Give someone a second chance at life. Don’t wait!