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.

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

How far would you go to help save someone’s life?

Posted February 28th, 2017 by Be The Match and filed in News, Patient Stories
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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.

Contreras-23 (2)Chris’ Story
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.”ChrisHospital

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.

Chris ShirtIn 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
  • Multiracial

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.

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.

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

 

After defeating blood cancer, Jeff wants to give back

Posted January 24th, 2017 by Be The Match and filed in News, Patient Stories
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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.

Jeff

Jeff, transplant recipient and Be The Match advocate

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

Act now: urge your legislators to continue funding Be The Match

Why do I give? Because I feel grateful… and lucky

Posted January 9th, 2017 by Be The Match and filed in Patient Stories
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Transplant recipient and financial contributor Michael Stewart opens up about his relatively smooth transplant journey, and how he hopes to pay it forward to those who endure a different experience.

Michael Stewart, a husband and father of three teenage boys, is grateful for so many things in his life – including his transplant journey. In 2004, Michael was feeling fatigued, and so he set up a doctor appointment. As someone who “works too much” and travels a lot for his job, feeling tired was normal, but this time something felt “off.” Michael’s intuition was right, and after receiving lower than normal blood count tests, his doctors diagnosed him with hairy cell leukemia.

Michael received treatment for his illness, and within 6-7 weeks of treatment, everything felt like it was “back to normal.” Michael continued to be monitored for a while, but after 3-4 years they told him he no longer needed to come in for routine checks. His leukemia had come and gone, and Michael was ready to move on with his life.

Fast forward a few years, to 2013, and Michael started feeling fatigued again. He thought to himself, “I’m getting older and travelling too much… that must be it.” But just to be safe, Michael went back to his doctor. This time, his blood counts had bottomed-out. It seemed as though his hairy cell leukemia had come back. Only a few days later, Michael was admitted to the ICU with sepsis issues, which occur when the body’s immune response to an infection triggers inflammatory responses throughout the body. The inflammation brought on by sepsis can trigger a series of changes that can damage multiple organ systems, causing them to fail. It is also most dangerous in older patients or those with weakened immune systems from treatment – like Michael.

This time Michael spent more than 45 days in the hospital (with a few short visits back home), but his blood counts just weren’t bouncing back like they had in 2004. The doctors performed a biopsy of his bone marrow, which didn’t indicate anything additional was wrong. Michael again followed his intuition, and after not feeling back to 100%, he decided to meet with a doctor who specialized in hairy cell leukemia to see if he could figure out what might be wrong.

Near the end of 2013, Michael found out from his new doctor that he hadn’t suffered a re-occurrence of his hairy cell leukemia – he had in fact developed myelodysplastic syndrome (MDS). MDS affects the bone marrow and blood, causing the blood-forming cells in the marrow to slow down, or even stop, making all three types of blood cells: red blood cells, white blood cells and platelets. It was discovered that his MDS had likely been brought on by the two rounds of leukemia treatment he had received in the past, and the damage to his bone marrow was so severe that his blood counts couldn’t recover on their own. Michael’s doctor started him on a temporary treatment regimen, but the reality was, Michael would need a marrow transplant to survive.

Time for transplant

Michael with his 3 sons, living in their temporary home in Seattle, preparing for his upcoming transplant

Michael with his 3 sons, living in their temporary home in Seattle, preparing for his upcoming transplant

All of Michael’s siblings were tested, but none was a full match. As Michael continued his temporary treatment plan, his doctor started a search of the Be The Match Registry®, and luckily there were multiple match options identified. Although Michael felt like everything was back to normal – and his temporary treatment was working – he was told that every day he continued that treatment, his risk for developing yet another disease increased. Michael met with doctors at the Seattle Cancer Care Alliance and decided to be proactive by pursuing the marrow transplant while he was relatively healthy – knowing he would eventually need it – rather than waiting until his health stated to deteriorate. As a result, he and his family moved from Colorado to Washington to begin the process.

Although Michael had multiple match options identified through the Be The Match Registry, a few of the potential donors backed out for various reasons. Finally, a 24-year-old female – a complete stranger to Michael – came through. She was a 10 out of 10 match, and agreed to go through with donation to help save the life of someone she’d never met. Michael’s initial transplant date was scheduled for right after Thanksgiving, but after a few setbacks, it finally landed on New Year’s Eve. Michael rang in the New Year in arguably the most amazing way – receiving the life-saving marrow he desperately needed – from a complete stranger.

Michael's hospital whiteboard on the day of his transplant, and his "re-birthday"

Michael’s hospital whiteboard on the day of his transplant, and his “re-birthday”

Michael stayed near the clinic for a few months after transplant – with regular visits to the lab and clinic every day. He was allowed to work (from home) and spend time with his family, but he had to avoid public places and his energy levels were very low. At day 12 he engrafted – meaning his body accepted the donated marrow. Around day 45, he was finally able to see his dog again. And at day 98, he got to go home … 22 days earlier than expected.

While Michael was receiving treatment, his family was always by his side. In total, they spent about 150 days living together in a new state, but they embraced the experience and to this day they even look back on it fondly. Michael’s children were able to attend school at “The Hutch” along with other children whose family members were there receiving treatment, providing a sense of community and support that helped them through that difficult time.

Michael’s recovery has been phenomenal. Today, still less than a year out from his transplant date, Michael and his family are back in their home state of Colorado, and Michael is back to working full time and traveling. While he notices a lower ability to “bounce back” after a long travel day, he otherwise feels like he’s pretty much back to normal.

Thank you is not enough

As Michael reflects on his transplant journey, he feels grateful of course, but he also feels lucky. According to Michael, he had it “easy” – too easy, and too stress-free compared to so many of those who endure a long and frightening process, sometimes without a happy ending.

“No stress, no desperate pleas for friends and family to be tested. No social media campaign. Because many people all over the world decided to take the simple step of being tested, I had a match. I have a chance, and a very good one at that, to see my three boys graduate from high school, get married, have their own kids. All because someone did something for someone they didn’t even know and may never meet.”

– Michael Stewart

The Stewart's dog, minutes after arriving back home in Colorado after Michael's transplant journey - happy for things to be "back to normal"

The Stewart’s dog, minutes after arriving back home in Colorado after Michael’s transplant journey – happy for things to be “back to normal”

That is why, when Michael decided to give a large financial contribution of $25,000 to Be The Match, he did so out of pure gratefulness. Gratefulness for his relatively smooth transplant journey and positive outcome, especially knowing he had it easier than so many.

Michael is grateful to Be The Match for providing him with access to multiple donor match options, and so grateful for his donor who never hesitated to save a stranger’s life. She donated through bone marrow extraction which took 4-6 hours. A 24-year-old who was asked to spend all day at the hospital right before New Year’s Eve said “Of course I will,” and Michael is forever grateful for that. “Thank you isn’t enough … you just can’t even put that into words”, he says.

Michael is also determined to turn his gratefulness into action. He is dedicated to furthering the mission of Be The Match through his financial contribution and awareness efforts, to help those who have a harder time finding a match – particularly those with ethnically diverse backgrounds.

Michael worked with Keith Stout, Director of Major and Planned Gifts at Be The Match, to ensure that his financial contribution could help in a number of ways – financially assisting patients and their families, adding more potential marrow donors to the registry, and helping advance research to improve transplant outcomes. Michael hopes that his contribution can help ensure that one day no one has to wonder if they will find a match, let alone survive the process.

“I am blessed and lucky that I’ve had the outcome that I’ve had. Be The Match gave me the opportunity to have lots of matches. I’m a lucky beneficiary of what had already been accomplished before I needed a transplant, and the people who were already on the registry. Now I want to help grow the registry even more, so that other people can be told they have lots and lots of matches too.”

– Michael Stewart

Interested in joining Michael in supporting Be The Match?

Join the registry – you could be the match that someone is searching for.
Give – big or small, financial gifts help continue our mission to help patients and their families.
For more information on major gift opportunities contact Keith Stout, Director of Major and Planned Gifts, at 763-406-8150 or sstout@NMDP.ORG

Tips for managing your medicines after transplant

Posted January 9th, 2017 by Be The Match and filed in Patient Stories
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Taking your medicines as directed after transplant is important for your health, but it’s not easy to do.

Calley and Greg, both transplant recipients, knew that taking their medicines correctly and on time was very important. We talked with Calley and Greg to find out what worked for them.

Ila Saunders, PharmD, BCOP, sees many of the struggles people have managing medicines after transplant. We also talked to Ila to get advice from her on behalf of the Advocacy and Policy Working committee of the American Society for Blood and Marrow Transplantation (ASBMT) Pharmacy Special Interest Group.

Consider the following tips, and pick which ones work best for you.

Tip 1: Use a pill case that fits your needspills-2_260x150px

Depending on your health and treatment plan, decide whether a daily or weekly pillbox is best. Sometimes after transplant people have prescriptions that change frequently. This may be especially true in the first few months after transplant, or during treatment for complications such as graft-versus-host disease (GVHD). If your prescriptions are changing often, then a daily pillbox may be best. “You have to fill a daily pillbox every evening and you’ll be better organized when there are frequent changes to your medicines,” Ila says.

Calley had her transplant 2 years ago and now she uses a large weekly pillbox. She says this is the main way she keeps track of what medicines she needs to take. “The pillbox I have is larger than a normal one – it’s actually bigger than a standard size piece of paper. With that, I’m able to plan on filling it weekly on Sundays, and then I don’t have to worry about remembering which pills to take when during the week. This also helps to plan when medicines are going to run out. I call the pharmacist on Monday if I know that my prescription will be finished by the end of the week.”

Though it’s convenient, there are risks with a weekly pillbox. “I have seen one too many weekly pillboxes pop open. Then it’s hard to accurately identify each medicine and put it back in the correct location,” warns Ila.

Tip 2: Create a color-coded chart or system to keep track of doses and symptoms

Many people find it helpful to keep a list of all their medicines for reference. A medicine list can also be a useful way to chart and keep track of your pills. These lists may include the dose, the time and date a pill was taken, and any symptoms you have.

After Greg’s transplant in 2009, he left the hospital with nearly 30 pills to take each day. To help him manage all of the doses, he kept a binder full of spreadsheets that he would fill out and follow. “In the spreadsheet that we created, I would include spaces to check-off a medicine after I took it. I found it to be like a little success each day I could look forward to.”

Tip 3: Get help from others pills-1_260x150px

There’s a lot to keep track of after transplant. Having someone to help you organize your medicines can take pressure off of you while you’re recovering. Ask your caregiver or other loved ones for help organizing your medicines, and taking them according to your doctor’s instructions.

Your transplant team can also help. For example, your transplant pharmacist can help you learn about your prescriptions, organize your pillbox, and give you a list of all your medicines. “Use a team approach! Use a system that works well for you and your loved ones. This can take the burden off of you as you recover,” Ila says.

Tip 4: Ask questions

There’s a lot to learn about your medicines. When you’re talking with your doctor or pharmacist about a new medicine, many people ask what the medicine is for and how much they have to take. You may also want to ask how to store it, if you should take it with food or not, and what to do if you miss a dose.

“I think that one of the biggest pieces of advice I could give someone is to listen to your body. If something feels off, don’t ever sit on it – there more than likely is something the doctor or pharmacist can do to either help or ease your mind,” Greg suggests.

 

Need more tips for managing your medicines? Talk to your doctor or pharmacist. Or call the Be The Match® Patient Support Center, which provides support, information and resources for patients, caregivers and families before, during and after transplant.

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

A transplant delivers a cure … and a new path in life

Posted January 9th, 2017 by Be The Match and filed in Patient Stories
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At 19 years old, Shane was making plans for his life, which included starting his second year of college. Then about a week before school started, Shane woke up feeling miserable. What seemed like a bad cold or the flu turned out to be something much more serious. Doctors found Shane’s blood counts were extremely low. He had aplastic anemia.

His doctor immediately admitted him to the hospital. After trying another treatment first, transplant was Shane’s best hope for a cure. He had his transplant just a few months later. His recovery hasn’t been easy, but his transplant journey led him down a new path that he now loves.

Here are Shane’s own words on how he found his new path:

Shane, transplant recipient

Shane, transplant recipient

“When I found out I had aplastic anemia it came as quite a surprise. I was a very active person, and I’d felt fine until I woke up one day with a fever and sore throat. Recovery from transplant has definitely had its ups and downs. Six months after my transplant, the steroids caused me to be about 60 pounds heavier than I’d ever been. I had some skin issues that fortunately did not turn out to be GVHD. I was going back to the hospital about once a week for checkups. It was hard to deal with.

“I was used to being social and active, and I was stuck in the house. I couldn’t be in the sunlight and I was uncomfortable in my own skin. We had to be careful with who came to see me because my immune system was still recovering, but it helped to have visits from friends.

“I didn’t always deal with the emotional aspects of recovery very well. Looking back, I should have taken better care of my mental health and reached out to a counselor or someone who could help me.

“Finally in September, I was able to start volunteering at my local community arts center again. It was a saving grace to have some responsibility outside the house. But at the same time, I was dealing with another disappointment. I couldn’t go back to college because of setbacks in my recovery. Thinking about going back was what had kept me going. I took it pretty hard, but the arts center scheduled me for more time and took me on as a volunteer intern, so that helped.

“I also started tutoring adults working on their GED. And I started volunteering at a local crisis center. Over time, the crisis center offered me a paid position. Now 3 years after transplant, I’m doing pretty well. My anxieties aren’t about my transplant anymore but like those of any 23-year-old asking, ‘What am I going to do with my life?’ I don’t feel alone anymore in feeling like, ‘What’s next?’ I love my job at the crisis center, and I’ve discovered that this is the type of work I want to keep doing in my life.

“My life took a different path than I expected, but it’s led to something good and I’m thankful for that.”

_____

While recovery is different for everyone, most people will have one or more setbacks.

Here are 2 strategies others have found helpful to cope with setbacks:

  • Meet with a counselor or therapist
  • Talk about your recovery with other transplant recipients ─ at your hospital or through Be The Match®

Have questions about recovery and want to talk with someone who’s been there? Our Peer Connect program can help.
We’ll put you in touch with one of our trained volunteers — who are transplant recipients and caregivers — to answer your questions and share their own transplant experiences. The program is available to both transplant recipients and caregivers and we will do our best to find someone that most closely matches your situation (based on age, disease, etc.) Talking with other transplant recipients and caregivers can help answer questions such as:

  • How long did it take to recover?
  • What is your life like after transplant?

Volunteers are available to talk by phone or email. Request a connection now.