If you are a match, it’s a miracle! Don’t question it, do it!

Posted May 12th, 2017 by Be The Match and filed in News
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Transplant recipient, Estevan

Carlos is a husband, father and golfer who loves to travel and spend time outdoors with his family. He’s also a frequent blood donor. It seemed like a natural choice to join the marrow donor registry. “My wife and I always knew we wanted to be donors.”

Having joined back in 2009, Carlos was shocked when he got the call that he was a potential match for a young boy with severe aplastic anemia. “It’s one of those things you don’t really think about after you register, until you get the call.”

Carlos describes the day of surgery as a little overwhelming, “seeing so many doctors, nurses, anesthesiologists and other medical professionals in my room to take me to surgery. All along the way, every single person told me how amazing I was. I was told I was a hero but, to me I was just doing the right thing, what I would hope someone would do for me or my family if necessary.”

“We were praying for the best possible outcome for this kid. It’s funny how we didn’t know him yet we prayed for him daily and asked our family and friends to keep him in prayer. We didn’t have a name to lift up but God knew who it was.”

Donation process

Carlos jokes that his main concern about the donation process was how long he’d have to be off the golf course. “It wasn’t hard. I was nauseous on the way home but, after that I was fine. My wife and I took our dogs for a walk the next day so the donation area would not stiffen and be too sore. I took the full seven days of recovery suggested and walked every day.”

And every day, they thought about the patient. “I just wanted to know how he was doing – hopefully I was giving this kid a chance at a normal life.”

Carlos’s prayers were answered. He learned that his recipient’s name was Estevan, a 13-year-old boy from Albuquerque, who loves playing basketball and video games. And Carlos learned what transplant was like form Estevan’s perspective.

 Estevan’s experience

“I’d never had chemo and it made me really sick. The day of the transplant, I was nervous. I was drowsy because of the pre-meds, but my mom, grandma, family friend and aunt were there with me.”

After the transplant, Estevan experienced fevers and infections, but he’s made a steady recovery. “I am in school and having fun with friends and cousins,” Carlos said. “It is good to be back around others.”

Estevan has this to say to Carlos, “Thank you very much for saving my life!” And Carlos has this advice to other registry members:Do it! Don’t think about it and over analyze it—just do it. If you are a match that in itself is a miracle, don’t question it, do it.”

Is complementary or alternative medicine right for you?

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You may have heard about complementary or alternative medicine (CAM) and wondered if it’s right for you. The answer? It depends.

These treatments can take a lot of different forms, and while some are generally safe, others can be dangerous. The risks can be higher when you have a weakened immune system, graft-versus-host disease (GVHD) or are taking prescription medicines. Before you try anything new, talk to your doctor. They can help you decide if it’s safe or not.

What is CAM?

While complementary and alternative medicines are usually used together, they’re not exactly the same. Complementary medicine is used along with standard care, while alternative medicine is used instead of standard care. Standard care is the therapy and medicines that your transplant team gives you.

When used along with your doctor’s recommended care and advice, some people say their complementary care helps them manage their symptoms, lower stress and improve their sense of well-being. Other people have reported no benefit.

Is CAM safe for me?

Penny, transplant recipient, practicing yoga

Generally safe CAM therapies include those that help with relaxation, well-being and movement such as:

  • Meditation and prayer
  • Guided imagery
  • Massage
  • Art and music therapy
  • Yoga

Potentially dangerous CAM include those that go against your health care team’s advice, such as:

  • Quitting or substituting a doctor-recommended medicine or treatment
  • Taking certain vitamins, supplements or herbs, that may interfere with your prescription medicines

Other CAM therapies may not be against your doctor’s advice, but you should still be careful. Talk with your doctor first if you’re considering:

  • Special diets. Certain foods could be harmful. For example, even something that seems harmless, like grapefruit or grapefruit juice, can actually cause problems with some medicines.
  • Acupuncture. When not performed in the right way, acupuncture could hurt you and cause infections and bleeding.

Questions to ask your doctor
Here are some questions to ask your doctor if you’re thinking about using CAM:

  • What benefit could I expect?
  • What are the risks?
  • Do the known benefits outweigh the risks?
  • Are there any potential side effects?
  • How might it affect my current treatment?

Helpful resources

Support for coping with nerve damage after transplant

Posted May 9th, 2017 by Be The Match and filed in News, Patient Stories
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May 7 – 13 is peripheral neuropathy awareness week. It’s not a common problem after transplant, but if you have it, you know it can affect your entire life – and not just physically.

Know the symptoms of peripheral neuropathy

Peripheral neuropathy is numbness and tingling in your fingers and toes. It can also cause pain, weakness, difficulty with writing, and problems with walking and balance. Even a light touch on the skin can be painful.

Everett, transplant recipient, with his doctor

Sometimes it can make your hands or feet more or less sensitive to temperature changes and pain. This may make it painful to step into the bath or shower. Or you may also be less aware of cuts or injuries to your feet. Find tips to stay safe and protect your hands and feet.

If you have any of these symptoms, talk to your transplant team. There are medicines to treat neuropathy and ease your symptoms.

Speak up!

“Advocate for yourself, and don’t minimize or play down your experience of pain or discomfort,” says Olivia Eusden, BMT Social Worker at Be The Match®. Olivia provides one-on-one counseling support over the phone to help patients and caregivers cope with transplant and recovery. She says “It’s important to listen to your body and track its changes.” If you struggle finding the right words to tell your doctor how you’re feeling, Olivia says, “Social workers at your clinic, or trusted family members and friends, can help you advocate for yourself.”

Get support

It’s also important to care for the emotional effects of peripheral neuropathy, says Olivia. She points out that when a chronic problem like peripheral neuropathy develops after transplant, it may be difficult for your loved ones to understand. “When people can’t understand something, they may be fearful and avoid talking about it. As a result, you may feel isolated and under-supported,” she says. If that happens, it’s important to take steps to break out of the isolation.

One way to get social support, says Olivia, is to help people help you. “Tell others how they can support you. Many people need direction when it comes to how to offer support. And, the support you need now may be different from support that others have given to you before or shortly after transplant.”

Olivia also suggests that you be gentle with yourself. “It takes time to adapt to peripheral neuropathy and figure out how to fit it into your life,” she says. “Take comfort in knowing that as with most new challenges in life, they start to make sense over time.” You can make sense of your life after transplant, including peripheral neuropathy, by reflecting on your transplant story. Olivia suggests, “Think about your experience with peripheral neuropathy and incorporate it into your new story. How we retell our stories shapes our personality, our future experiences, and old and new relationships.” Your story can empower you to move forward in your life after transplant.

Finally, Olivia suggests to “Practice self-care and spend time with positive people.” She notes that support from mental health professionals may also help you cope. “You can recover the support you need by seeing a licensed mental health professional,” she says. To receive free counseling support to help you cope with peripheral neuropathy or other challenges after transplant, call 1 (888) 999-6743 or email patientinfo@nmdp.org.

Connect with a peer

“Peer support is some of the best support for people coping with uncommon problems after transplant, like peripheral neuropathy,” says Olivia. Peer support can be in the form of a support group or one-on-one connections.

Support groups are safe spaces to share your fears and frustrations without feeling judged or misunderstood. People in a support group may understand life with peripheral neuropathy in ways that other people might not. There are groups that meet in person, online or by phone. Ask the social worker at your clinic for help finding a support group for you.

One-on-one support is another option. Our Peer Connect program can connect you with a trained volunteer who’s been there. Other recipients and caregivers, with experiences like yours, are available to talk by phone or email, sharing their experience and tips.

To request a connection, visit: BeTheMatch.org/patient-peerconnect

Kamryn Can’t Wait – She Needs Your Help

Posted May 8th, 2017 by Be The Match and filed in Patient Stories
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Kamryn is 11 years old. She’s an only child and a straight-A student who loves singing and playing the keyboard. While there are many typical things about this vivacious girl from Oklahoma City, she also faces a life-threatening battle: sickle cell anemia.

Kamryn, searching patient

Kamryn needs a bone marrow transplant or her life will be cut short. It is the only known cure. This is the reality her family must face every day, and Kamryn can’t wait. She has had five potential matches, but none were willing or able to donate marrow.

How you can help

Joining the registry is one of the first – and perhaps best – things you can do to help Kamryn and patients like her in their search for a match. You can support Kamryn by joining the marrow registry at www.Join4Kami.org. By joining Be The Match Registry® as a potential marrow donor, you can actually save someone’s life – how amazing is that?

An astounding 70 percent of patients don’t have a fully-matched donor in their family. The bottom line is this: Waiting patients are depending on your involvement with Be The Match. And while the outcome is most certainly life-changing, it also has the potential to be life-saving.

Younger donors are especially needed at this time. While people of many ages are encouraged to register, it is recognized that the younger a person is, the healthier their bone marrow likely is. Put simply, more healthy bodies means more possible matches for patients like Kamryn.

Increased odds

Sickle cell disease affects about 70,000 – 100,000 people in the United States alone. It’s most common among African Americans and Hispanics, but is also found in other ethnic and racial groups.

A patient is most likely to match someone of the same ethnic ancestry or ethnic background. For patients like Kamryn, who are African American or Black, the chance of finding a suitably matched, available donor on the registry is 66-76%.

Be The Match is constantly looking to expand the ethnic diversity of the registry. It increases the variety of tissue types available, and ultimately helps more patients find the match they need.

Join today to help patients like Kamryn stop searching – and start thriving.

Two-time donor is a hero for a stranger and his brother

Posted April 27th, 2017 by Be The Match and filed in News
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Transplant Recipient, Juli with her Marrow Donor, Mike

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.”

Mike and His Brother

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.”

You can help ensure older patients get the transplant they need

Posted April 18th, 2017 by Be The Match and filed in News
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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.

Ed, marrow transplant recipient

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.

Posted April 3rd, 2017 by Be The Match and filed in News
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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

Alicia, Be The Match Service Intern

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.

Butler Marrow Donor Encourages Others To ‘Be The Guy’

Posted March 28th, 2017 by Be The Match and filed in News
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DSC_0584.JPGThis 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.DSC_6598.JPG

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.”ChaseStigall_Donation

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 CDSC_4756.JPGhase. “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.

 

Be The Match Walk+Run events bring supporters together

Posted March 27th, 2017 by Be The Match and filed in News
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Ari M.

Ari, transplant recipient

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.

Bwalk16_Mpls_075

Minnesota Senator Klobuchar

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.

Volunteer of the Year Daniel Cox raises spirits as well as contributions

Posted March 20th, 2017 by Be The Match and filed in News
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Daniel, PBSC donor, fundraiser and recipient of Be The Match Volunteer of the Year Award.

Daniel, PBSC donor, fundraiser and recipient of Be The Match Volunteer of the Year Award.

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.

Learn about ways you can support Be The Match.