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.”

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

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.

One woman’s experience with GVHD of the vagina and vulva

Posted March 6th, 2017 by Be The Match and filed in News, Patient Stories
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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:

  • Dryness
  • 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

"What is GVHD?" video from our Basics of Transplant series

“What is GVHD?” video from our Basics of Blood and Marrow Transplant series

“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 patientinfo@nmdp.org.
  • 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.

Reconnect with your partner after transplant

Posted March 6th, 2017 by Be The Match and filed in News, Patient Stories
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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

Elsa, transplant recipient, with her husband and caregiver, Ramon

Elsa, transplant recipient, with her husband and caregiver, Ramon

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?

Rekindle intimacy

Ines, transplant recipient

Ines, transplant recipient

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:

  • Cuddle
  • 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.

Seek help

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.

CONTACT THE PATIENT SUPPORT CENTER
CALL: 1 (888) 999-6743
Monday through Friday, 8 a.m. – 5 p.m. Central Time
EMAIL: patientinfo@nmdp.org
LEARN MORE: BeTheMatch.org/patient