When Mike joined the Be The Match registry, he was ready to be the life-saving donor for a patient in need – he just never imagined he would be a match for two patients in need.
About a year after joining, Mike got the call that he was a match and completed his marrow donation in June 2015.
When doctors told him that his recipient needed a T-cell booster and asked if he would also donate peripheral blood stem cells. For Mike, there was no question as to whether he would help again.
“I knew that I would not let this woman down,” he said.
Thankfully, Mike’s recipient, Juli, recovered and they were able to meet on October 7, 2016.
“It was awesome to be able to meet Michael and his family,” said Juli. “He was gracious, kind, but definitely not one to be in the spotlight for the amazing miracle he gave to me and my family.”
Shortly after the thrill of getting to meet his recipient, Mike was shaken by the news that his brother, Daniel, had been diagnosed with acute myeloid leukemia (AML).
As Daniel’s only sibling, Mike was immediately tested to see if he was a match.
“I was thinking, ‘Oh my God, please let me be a match,’” he said. “I know my body is capable of doing this.”
Fortunately, Mike was a perfect match for his brother – to his and his family’s relief.
Mike again donated marrow on February 14, 2017 and was able to be his brother’s life-saving donor.
Knowing that he has given two people, one a stranger and one his brother, a second chance at life, Mike said still feels in awe that he was able to be an unrelated and related donor.
“We feel like Juli’s situation enabled my brother to get help,” Mike said. “You do what you can – I try to be an example. If you can do something to help someone, you help them.”
The number of older patients receiving a marrow transplant has increased significantly in recent years. But due to Medicare payment policies, transplant centers are losing thousands of dollars on each Medicare beneficiary they treat making it difficult for them to continue performing transplants for these patients.
In 2015, 138 hospitals around the country provided this life-saving therapy to nearly 1,200 Medicare beneficiaries. Patients like Ed, who received his transplant when he was 68 years old.
“Our oldest grandchild was 6 years old and the youngest was just 9 months when I had my transplant,” commented Ed. “I’ve been able watch them grow up and they’ve had the chance to know their grandfather as a person, not a picture.”
Ed says his transplant has given him the gift of life and the gift of time. And he’s making the most of it. In addition to spending time with family, he is very active in his church and has volunteered over 400 hours with Be The Match: connecting with patients, transplant centers and legislators.
“After my transplant, I’m more aware of the issues which people [like me] can face, and I’m trying to give back,” said Ed.
Medicare patients need your help
We need your help to ensure patients who are Medicare beneficiaries have the same access to transplant as those who have commercial insurance.
What Medicare reimburses hospital transplant centers does not cover the costs of searching for a donor and obtaining their cells. If CMS does not reform the current payment policy for transplant hospitals will not be able to keep treating Medicare patients, like Ed.
This spring, the Centers for Medicare and Medicaid Services (CMS) will determine the Medicare payment policy for inpatient transplants for the coming year.
Please submit a comment letter to CMS urging them to adequately reimburse for marrow transplant so patients can get the care they need. You can customize our pre-written letter and send it directly to the decision-makers at CMS.
We need comments from passionate people like you to help CMS understand how important this is. Thank you for your support!
Interested in legislation and policy changes that affects transplant patients? Learn more at BeTheMatch.org/advocacy.
College student highlights benefits of service internships through Be The Match®, calls for more students to try the experience.Show Content
When looking for an internship in college, many students find the process stressful. While paid internships may seem more desirable to students, service internships have the appeal of gaining broad experience while earning school credit. For Alicia Reibling, upon learning about service internships through Be The Match, the experience she would gain was the biggest advantage to accepting a position.
Alicia began her service internship at the start of Summer 2016. As she was finishing her junior year at Bethel University, Alicia wanted to gain a broad experience in human resources. She identified early on the positives of doing a service internship, but also acknowledged the potential financial hardship.
“Balancing time and money were hard, but the long-term benefit of this service internship is already outweighing the short-term financial gain of simply having a summer job or a paid internship that offers less flexibility,” Alicia says.
Now a senior majoring in Human Resources, Alicia was looking to learn about the various aspects of human resources – hiring, benefits, workplace functionality, and others. Instead of accepting an internship focused on one area within that department, she decided to take a service internship with Be The Match – one that offered her the flexibility to learn about human resources as a whole instead of just one aspect of it.
“I think that the biggest benefit of completing this service internship has been the experience in such a wide variety of areas as well as the connections I’ve made. People at Be The Match are so passionate about the mission and are so thankful for the time service interns spend at the office. I felt like I was learning a ton while also giving back,” Alicia recalls.
Service internships at Be The Match
Be The Match has a variety of service internships available at the Coordinating Center located in the North Loop area of Minneapolis. Internships are offered in a variety of departments and can be offered for school credit. Each internship is different based on the intern, and many can be molded to fit your personal career and experience interests.
“Be The Match gives you a chance to work for a purpose. You get your foot in the door at a great organization, which is important for the future,” Alicia says.
Interested in being a service intern? Explore those opportunities online.
This Thursday marks the 29th annual State Farm Slam Dunk & 3-Point Championships that will feature 24 of the best collegiate dunkers and sharpshooters. Chase Stigall, a former Butler basketball player and marrow donor, is traveling to Phoenix for the event that is part of the NCAA Final Four festivities. Chase will have a chance to talk to the players about his donation experience and will also be recognized on the court during the live event.
The former Bulldog will feel quite at home. Chase was part of the back-to-back championship game teams in 2010 and 2011. He’s looking forward to speaking about his marrow donation experience with the college athletes. “I was just in their shoes,” says Chase. “Except one of my teammates is no longer with us.”
That teammate was Andrew Smith. At the age of 25, Andrew lost his battle with blood cancer.
Chase rallied along with the Butler community in honoring Andrew through Project 44, a partnership between Butler University and Be The Match®. Knowing that 1 in 430 go on to donate marrow, Project 44’s goal is to add 18,920 people to the registry so that they can save 44 lives. 44 was
Andrew’s jersey number.
Last summer, Chase got the call that he was a match for a 2 year-old boy.
“I had no second thoughts,” says Chase. “I was just excited. I called Andrew’s wife to tell her that Andrew is still working to save lives while he’s up in heaven watching over us.”
For Chase, donating was simple and easy. “When I woke up, my lower back was sore,” Chase says. “I hurt more getting undercut during a Butler basketball game.”
Chase’s dream is for all Division I college athletes to join Be The Match Registry®.
“The best thing about donating is knowing that you are helping someone else,” says Chase. “You are giving that person the ability to hopefully overcome their sickness.”
The State Farm College Slam Dunk & 3-Point Championships is part of a series of sports-focused sponsorships Be The Match has partnered with, all in the hopes of getting committed young men to join the registry.
For more information about marrow donation, and the need for young men to join the registry, visit BeTheGuy.org.
Easter Sunday 2013 is a day that one Minnesota family will never forget. Earlier that spring, Glennae Meyer began to notice that her 8-month-old son, Ari, was not his smiley, happy self. In the weeks following, Ari would go hours without eating, continuously battled ear infections and pneumonia. He was given an oxygen machine to help him breathe – all while his white blood cell count dropped to a scarily low level. By Easter, Ari’s doctors had finally diagnosed him with Hyper-IgM, an auto-immune deficiency.
They told Glennae that a marrow transplant was Ari’s best chance for a cure, but like 70 percent of patients, Ari did not have a fully-matched donor in his family. Ari spent seven weeks in the hospital before receiving his lifesaving marrow transplant from an anonymous donor in July of 2013.
Now, more than three years later, Ari continues to get stronger. He and his family try to attend the Be The Match Walk+Run in Minneapolis each year – an event bringing together Be The Match supporters, transplant recipients, donors, searching patients, and their families and friends.
Last year, Minnesota Senator Amy Klobuchar (D) attended the Minneapolis Walk+Run, in support of those affected by blood cancers and other diseases – like Ari and his family. She spoke to the crowd before the race about the importance of bone marrow and stem cell transplantation. She also talked about her support for funding the C.W. Bill Young Cell Transplantation Program.
Encouraging your legislators to join community events that are important to you is a great way to get them involved and understanding of the issues that matter to you most. Learn more about Be The Match Walk+Run events.
Daniel was high school senior when he first became interested in marrow donation while writing a speech about Be The Match. He decided to join the registry, and was selected as a match just 3 months later. While he waited to donate, he started Indiana University’s Be The Match on Campus chapter. In spring 2014, Daniel donated PBSC to Missy, a wife and mother to 3 children. The transplant was a success, and the two became friends—determined to share their story to inspire others to join. In addition to hosting donor drives, he and Missy worked on a project to introduce legislation making it easier for moms in Indiana to donate their baby’s umbilical cord blood.
Unfortunately, Missy fell ill unexpectedly and passed away in 2016. In her honor, Daniel started Matches for Missy. Today, Daniel is the president of the Be The Match Inaugural National Committee, and has raised close to $20,000 to help patients and their families. Daniel was recognized a Volunteer of the Year at Be The Match Council Meeting.
About 6 months after her transplant in 2014, Lola felt burning and discomfort near her vagina. She went to the doctor many times and over the course of 18 months she had treatment for a urethra blockage and low hormones from menopause. Finally, her doctors determined the cause was graft-versus-host disease (GVHD) of the vagina and vulva.
Symptoms of GVHD of the vagina and vulva
Chronic GVHD of the vulva and vagina happens when the donor cells attack these tissues. The vulva is the outer part of the vagina (birth canal). According to Pamela Stratton, MD from the National Institutes of Health, it’s important to notice changes in your genitals and tell your transplant team or gynecologist about those changes. “If you know it could happen and start feeling the burning sensation, then you might go to the gynecologist and get treatment,” says Lola.
Some of the common symptoms for vulvar and vaginal GVHD include:
- Pain with urination, while at rest or during vaginal sex
- Redness or open sores in the vulva or vagina
Diagnosing GVHD of the vulva and vagina
“Chronic GVHD of the vulva is very common. It affects about 1 in 4 women after transplant. Vaginal chronic GVHD is less common. Since the vulva and vagina are different parts of your anatomy, treating one area of chronic GVHD doesn’t prevent or lower your risk of getting chronic GVHD in the other area,” Dr. Pamela Stratton says.
It’s important to diagnose chronic GVHD of the vulva and vagina early because early treatment can ease your symptoms faster. It also lowers the chances of it becoming a more serious problem. Doctors diagnose it with a gynecological exam. “They may take cultures and a tissue sample to diagnose chronic GVHD and rule out an infection or other problem,” says Dr. Stratton. For Lola, she felt relieved when she got the diagnosis. She no longer felt alone, but was encouraged to know what it was and learn how she could deal with it.
Management and treatment
Soon after Lola’s diagnosis, she started treatment with a topical steroid. Dilators or vaginal sex can also help keep the vagina from narrowing or closing. Currently, there is no known way to lower your risk of getting chronic GVHD of the vulva or vagina.
Each woman has different symptoms at different times, so it’s important for the gynecologist and transplant team to work together to offer the best treatment. “Treating specific genital GVHD changes is an important first step. Women also benefit from a multidisciplinary team approach to their reproductive health with members of the team including gynecology, urology, and sexual therapy specialists, as well as pharmacists. This team can help address effects associated with chronic GVHD including depression, stress, and menopausal changes,” Dr. Stratton says. Lola agrees, “It can cause depression. Talk to your health care team. You’re not complaining, but people don’t know you’re having a problem unless you tell them.”
Your quality of life is important, and that includes your sexual relationships. Lola encourages other women going through this to not be shy. “Modesty is difficult for a lot of people to overcome. So stand in front of a mirror and say the words ‘vagina’ and ‘vulva’ a lot until it becomes normal. Your vagina is a part of your anatomy like your elbow except it’s not out in public. And all women have one.” Talk openly with your health care team and sexual partner about how you feel. This is important for your health, your quality of life and your recovery.
For more information
- Contact the Be The Match Patient Support Center. Receive free counseling support from a licensed BMT social worker to help you and your family cope with GVHD. Call 1 (888) 999-6743 or email email@example.com.
- Download Fast Facts: Chronic GVHD of the Vulva and Vagina. The fact sheet offers information on how to ease symptoms, how it can be treated, and when to call your doctor. It was developed by Be The Match and the Chronic Graft-versus-Host Disease Consortium.
The emotional stress of illness and recovery affects transplant recipients and caregivers. For parent caregivers, caring for your child can strain your relationship. It can be easy to lose touch with your partner when you need that support and connection the most.
Some people develop a deeper appreciation for each other after transplant. But others may feel frustrated or depressed about changes in their relationship. Sometimes one partner is happy with the relationship but the other partner is unhappy.
Start the conversation
Sometimes it’s hard to find the ‘right’ words to share your feelings with your partner. Still, sharing your feelings honestly and with compassion can help strengthen your relationship. You might talk about:
- The good and the bad with a focus on solutions,
- How you’d like things to be, and
- Your own feelings and actions you can take.
Be mindful to:
- Not interrupt your partner. Let them know you’re listening by saying, “I hear you.”
- Use “I” statements instead of “you.” Statements that start with “you” can put people on the defensive. Instead of “You make me feel …” say “I feel (name the emotion) when (name the behavior) and (state what you need to happen).” For example, “I feel hurt when I’m shouted at. It would be helpful if we could talk about our feelings calmly.”
“It’s important for couples to talk about all the changes they’ve been through, how they feel about them, and how they affect their priorities and plans for the future,” says Diane, MPH, BMT Patient Navigator at Be The Match®.
Some questions that can help you and your partner talk about your relationship are:
- How is your communication? Has it changed?
- Do you feel emotionally close, or distant?
- Do you share the same expectations about recovery?
- Do you share the same goals for the future?
- Have your roles changed? How do you feel about that?
- How do you feel about your sexual intimacy? How might you want it to change?
Your sexual health and intimacy is an important part of your recovery and life after transplant. But many people struggle with this after transplant. Intimacy starts with communication.
If you’re in a relationship, talking about your feelings can help build physical intimacy. Explore ways to be intimate with your partner without having sex:
- Give each other a massage
- Tell each other what you love about the other
If you’re single, you may have worries about dating again. Remember, someone who truly cares about you will accept you for who you are and what you’ve been through. When the time feels right, tell your partner about your transplant experience. Some people are ready to share this right way. Others feel more comfortable waiting until they know someone a little better. There’s no right or wrong way to share your experience.
It may be hard for you and your partner to adjust to changes in relationships and intimacy after transplant. You are not alone. And help is available.
Support groups can be safe places to talk about your relationship with others who understand. A licensed social worker can help you talk about issues and find ways to solve problems.
The Be The Match Patient Support Center offers counseling services. We provide one-on-one support by phone to help you and your loved ones cope with transplant and recovery.
What if we told you it’s easy for you to do just that – right now?
For many patients, the hope of receiving a bone marrow transplant is the lifeline to a cure. We know the donor process can seem daunting, so we’re here to help walk you through it. You’re one step closer to being a lifeline for individuals in need.
Joining the Be The Match Registry® is fast, easy, and painless. You provide a simple swab of cheek cells and your tissue type will determine whether you are a match for waiting patients.
The need is urgent, and the gift of time isn’t given to all. For Chris Contreras, one match will be the difference between life and death. It’s possible that you could be that life-saving match.
It was an unassuming Monday when Chris, his wife Stacy, and their three children found their lives uprooted without warning. Chris’ world was forever changed during a simple game of squash. “I went for a ball towards the glass and hit my elbow,” Chris recalls. “A couple of days later I had an inflamed elbow [and] went to the doctor.” His injury puzzled medical professionals.
Months of testing and waiting followed. When the Contreras family finally received their answer, it was far from what they had hoped to hear. The diagnosis was aplastic anemia: a serious blood disorder. For Chris and others, a fatal disease.
Chris will die unless he finds his one chance for a cure. He has to find a specific someone – the perfect match – for a bone marrow transplant. “How do you tell your kids what’s going on?” Chris says through tears. “Trying to tell young kids – especially your own kids – what you’re going through is hard.”
Amidst their hope for a match, the Contreras family has struggled for answers to some of life’s biggest questions. As Stacy explains, “I used to ask ‘Why? Why is this happening to us?’ … Until I took it and I thought ‘I can take this and do a lot.’”
The family began hosting drives to add more people to the registry. To date, hundreds of people have joined and six people have been matched to other patients in need of a transplant.
In the face of a devastating diagnosis, Chris, his wife Stacy, and their three children have grown closer, but their time is running out.
“Knowing that there’s not a match for me yet today, it’s tough,” says Chris.
How You Can Help
Join the registry today to see if you are a match for Chris and patients like him.
You may match someone months or years from now – or you may never be called to donate. That’s okay too. It’s important to stay committed, so that if and when a patient needs you, you’re ready for them.
Already on the registry? Help us spread the word. Together, we can help more patients.
Ethnic Background Matters
Did you know that patients are more likely to match with others of the same ancestry? That’s why we’re especially interested in expanding the ethnic diversity of donor registrants. We have an increased need for donors of the following backgrounds:
- Black or African American
- American Indian or Alaska Native
- Asian, including South Asian
- Native Hawaiian or other Pacific Islander
- Hispanic or Latino
Many people die before finding a match. It doesn’t have to be that way. The more people who register, the greater likelihood a match will be found.
Give waiting patients and their families more tomorrows. Join today.
Be The Match Success Stories
Your decision to register could be a new beginning for waiting patients like Chris. These are just a few patients’ life-changing transplant stories.
- Your self-sacrifice saved our daughter’s life: Parent’s personal thank you to a donor
- A single mother’s transplant story
- Family ties
The impact of a successful transplant extends beyond patients and their families. Donors become heroes. If you’re curious about what the process feels like, click the links below.
- College football player stays true to his commitment
- Marrow donor Johnathan: “Be the change you want to see in the world”
- An unusual twist of fate: Erma’s story
- Paul, marrow donor, explains donation process
So here’s the final question: Are you ready to become part of someone’s success story? Embrace the power of being the cure. Take the time to save a life. http://bit.ly/2lv0VrU
Jeff’s whole life changed when he was diagnosed with blood cancer. After numerous treatments, his doctor told him that his best chance for a cure was a bone marrow transplant. His doctors turned to Be The Match in search of an unrelated donor. In January of 2015, Jeff had his transplant.
One year after receiving his life-saving bone marrow transplant, Jeff has decided that an important and natural next step is advocating for others facing similar situations that he went through last year.
“I was inspired by having to face leukemia and fighting my way through the disease all the way to a successful bone marrow transplant,” Jeff said.
Currently, Jeff volunteers with Be The Match in the Peer Connect Program as a mentor for other marrow transplant recipients. Upon retiring from his law practice later this year, Jeff plans to fully enjoy his hobbies which include horses and music. He also hopes to use his law background to help advocate with legislators and insurance organizations on behalf of transplant patients and their families.
Jeff says, “After staring death in the eye and coming through that, it felt natural that I would give back to the community and help in the fight to cure cancer as well as helping others who are going through it.”
Get involved with Be The Match legislative advocacy