After facing death, Sparta native becomes peer mentor to others
The majority of people don’t have to fight for their life at such a young age, but at 25-years-old Rachel Fries, formerly of Sparta, has already had a tremendous journey.
Fries was 19-years-old, starting her second year of college. The night she went into the hospital she had worked until 1 a.m., went home and started to feel unwell.
She began shaking uncontrollably and after lying in bed for two hours, shaking, she finally went to the emergency room where medical personnel took her blood. According to Fries, the average female should have a hemoglobin between 12 and 15 grams per deciliter; she was at 3 grams per deciliter.
“They said they didn’t know how I was alive and they knew if I hadn’t come in that night I would have died,” Fries said.
About a week later, on January 31, 2014, Fries was diagnosed with a rare blood cancer called Myelofibrosis, which is one of three Myeloproliferative Neoplasms. The only known cure for which is a bone marrow transplant
“I was told that if I didn’t have a transplant, I wouldn’t live to see my 21st birthday,” Fries said.
Fries doctors began the process of trying to find her a donor. They first tested her two brothers because typically the best donors are those who have very close DNA markers called HLA markers, however, her brothers were not a close enough match.
Fries doctors then turned to the National Bone Marrow Registry through Be the Match. The registry is a worldwide group of individuals joining and volunteering with no certainty that they’ll be asked to donate.
After numerous painful tests and months of waiting, Fries’ doctors found her best potential donor, a 58-year-old man in Florida. Her doctors picked her donor because he was in the U.S. and he had a closer blood type match.
In May 2014, Fries had to undergo chemotherapy for seven days before receiving her transplant. While she was receiving chemo, her donor went through numerous tests and preparations as well.
“The chemo I underwent was the harshest there is because you need to completely wipe out everything in your system. The cancer is in your blood, your bone marrow; it’s everything it’s not just a localized thing,” Fries explained. “After chemo I had no immune system and if I hadn’t gotten that donation within a certain time frame I would have died because I didn’t have anything making blood in my system.”
On May 29, 2014, Fries had her unrelated allogeneic transplant at the Mayo Clinic in Rochester, MN.
After her transplant, the first 100 days were the most crucial. Fries’ doctors meticulously watched her for engraftment, which is when the blood-forming cells received on transplant day start to grow and make healthy blood cells.
“It’s a very slow process and I had to get checked every day for 100 days,” she said.
Fries and her family had to live in Rochester temporarily for three months. As she essentially had no immune system, Fries had to remain in a sanitary space and she needed to wear a mask while she was outside.
“There were some days I couldn’t get out of bed and I was just puking the whole day,” Fries said, adding she was readmitted into the hospital because she couldn’t eat or take her meds. “The chemo had a delayed reaction so about a week and a half after my transplant I had mouth and throat sores.”
One particular medicine acted as a barrier between the donor cells and her body, without it her body could have started to reject it. Following her transplant, Fries had several ups and downs including septic shock, anxiety, depression and probably the scariest, Graft-versus-host disease (GVHD.)
GVHD is an immune condition that occurs after transplant procedures when immune cells from the donor, known as the graft, attack the recipient patient host's tissues; the disease is a side effect that is common after a bone marrow transplant.
“With this transplant you could get dry eyes, the levels of your kidneys can go up, your lungs could go bad, any part of your body could start rejecting the cells working in your body,” Fries explained. “The whole time I was recovering I had acute kidney failure, I had dry eyes, I’ve had skin graft-versus-host disease, everything that could happen, happened.”
Through all of that, her emotional health took a hit too. She was drained, stressed and she didn’t know if she was going to live or die.
“You also have to be strong for everybody because you don’t want them to know you’re scared,” Fries said.
This form of cancer is typically only seen in individuals who are 60-years and older. So, when people Fries’ age gets it, it’s very, very rare.
“When I was diagnosed, first, I was shocked that I have the word cancer associated with me now, second, I needed this huge transplant that I didn’t understand and third the doctors said they don’t have any stats how this was going to work out because people my age don’t get this,” Fries said. “I was surrounded by my family and they all had the same blank look on their face. We just blindly did what the doctors said because we didn’t know what to do.”
Through it all, her diagnosis, her transplant and her recovery, Fries’ mother was her primary caregiver.
By September 10, 2014, Fries was officially in remission and after years of struggling and figuring out how to handle her health, Fries wanted to help those facing the same struggle.
Over the last year and a half, Fries has sought to help others who are in the same unfortunate situation she was six years ago. She now volunteers as a peer mentor for three different Bone Marrow/Stem Cell Transplant organizations including Be The Match (where her donor was found), The Bone Marrow Foundation and Imerman Angels.
Through these organizations, she connects with transplant candidates, recipients and caregivers to answer questions, provide resources and offer support regarding their upcoming transplants.
“Looking back at it, I’m glad I got sick because I was in a different mindset when I was that young. I had a different path and now I feel like I have a purpose,” Fries said. “This mentor program brought me back to my diagnosis when I had nowhere to look, no one to turn to and no one to talk to. I want to be the person that I needed when I was 19.”
Fries also actively promotes the National Bone Marrow registry in hopes that others will sign up to be possible donors or donate money to the cause if they are ineligible to be a donor. When it comes to matching a donor to a patient, the likelihood depends greatly on ethnic background matches.
“Although I hope everyone who is eligible would choose to sign up as donors, it is crucial for those of ethnic backgrounds other than Caucasian to join,” Fries said. “Joining the registry is super simple. All you do is send in a cheek swab that can be ordered online, sent to you and returned via mail. You never know if you can give someone a second chance at life.”
One of Fries’ goals in life is to create a non-profit focused on providing resources to young adults who are going through cancer diagnoses and stem cell/bone marrow transplants.
“I don’t want anyone to feel alone and scared because they don't know who to talk to or where to turn; like me back in 2014,” she said. “It's a big task, but I have a lot of support from my family and friends to make it happen someday.”
For more information on transplants, how donors are matched with patients, joining the registry, the Peer Mentor program or Be The Match in general, visit bethematch.org.
Look for the 2020 Wedding Guide, inserted into this edition of the Herald, for more on Fries’ final journey to health and happiness.