What’s “normal” after BMT?

Posted March 8th, 2019 by Be The Match and filed in News
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You may have heard the phrase, “Tell your doctor if you notice anything new or unusual after transplant.” Well, what do you do if everything feels new or unusual? For many people, it’s hard to know what could be a problem and what’s part of the “new normal.” Here are 5 tips to help you adjust to life after BMT:

Brenna, MPH, RN, ONN-CG, BMT Patient Navigator

1. Tell your doctor about new symptoms

According to Brenna O’Brien, MPH, RN, ONN-CG, BMT Patient Navigator in our Patient Support Center, “It’s better to be on the safe side and share any new symptoms with your doctor, even if everything feels new and unusual.” She adds, “If your doctor says your symptoms are part of your “new normal,” they can offer you ways to manage them that maybe you didn’t think of before.”

It’s been 3 years since Gary’s second transplant, and he’s adjusted to his life after transplant over time. But in those days and weeks shortly after transplant, “normal” was unclear and always changing, especially when he had new symptoms. “Whenever I went in for a checkup, if there was anything my transplant team didn’t like, they put me in the hospital,” says Gary. “At the time it was overwhelming, but I appreciate it now because it kept me alive.”

To make it easier to keep track of your symptoms, Brenna recommends writing them down. “Remember, it’s your job to report any changes. Keeping a log of how you’re feeling can help you do that.”

2. Find ways to adapt

Gary’s recovery wasn’t always smooth. He was hospitalized 13 times after his second transplant. He had a variety of complications, including graft-versus-host disease (GVHD), pneumonia and the flu. He realized his life after transplant didn’t look like his life before transplant.

So, Gary adapted his routine to fit his current abilities. “I have neuropathy, which led to falls and stumbles. Realizing I didn’t have the balance, coordination or energy to walk, I got an exercise bike and started using it every day,” he says. “That was my substitute.”

He also has found other ways to still do things he enjoys. “I really used to enjoy going to sporting events, but I’m uncomfortable with the big crowds and stairs,” he says. “Honestly, going to those events aren’t even worth the hassle when I can watch sports comfortably at home, and I can even see more of the game.” His family has adapted, too. They have family celebrations at home instead of going out. And, they know that he may need to take naps more often.

Gary’s advice is to “focus on the things you can do, not on the things you can no longer do.” This mindset may help you adapt to where you are today. And, he adds, “set some reasonable short-term goals to focus on.” Seeing your progress can boost your spirit as you look towards the future.

3. Reconnect with your body

Your body has been through a lot, and reconnecting may be a step towards adjusting to the changes in your body after transplant. For some people, it can be hard to trust their body again. Gary, however, says he’s in awe of his body’s strength. “I’m amazed that my body is strong enough to fight through 13 hospitalizations,” he reflects. And compared to life before transplant, “I listen to my body a lot more,” he adds.

Brenna says that acknowledging the changes and losses you’ve experienced can help you reconnect with your body and understand its limitations and its resilience, too. “It’s a process. Your relationship with your body can change for better or for worse after transplant. Take stock of the changes, then focus on all of the things you’ve overcome,” she says.

4. Keep expectations real

Gary says, “Everyone is going to recover at their own pace.” Base your expectations on where you are now with your recovery, and what you can do.

It’s not uncommon for other people, such as your caregiver, to have expectations for your recovery after transplant. Brenna acknowledges that this can be frustrating. “It’s understandable,” she says, “that your caregiver may struggle as you adapt to your new normal.”

Their expectations for you may be well-intentioned. It’s hard for them to see you go through so much. Work together to create reasonable expectations for your recovery. Brenna adds, “You’re on the same team, and you want the same things. Start by agreeing on that and go from there.”

5. Take control where you can

When you’re adapting to the changes in your body after transplant, think about the things you can control. Brenna suggests that a follow-up or survivorship care plan can help you gain more control. “It’s important for your health, but it can also reduce anxiety of the unknown as you move forward. It can be helpful physically and mentally.”

Gary took control of his mindset. He made a point to focus on one day at a time. “Don’t get too far ahead of yourself,” he says. “Live day-to-day while working on getting mentally, physically and spiritually stronger. While you’re doing that, hope that things will get better. Hope for more strength. There’s always hope.”

Support and resources for you

The Be The Match Patient Support Center offers free support and resources to help you find and adapt to your new normal after transplant.

Sharing your story after transplant

Posted March 8th, 2019 by Be The Match and filed in News
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Ted, transplant recipient

In 2005, Ted was diagnosed with acute lymphoblastic leukemia (ALL). Throughout his journey, he wrote in on his CaringBridge® website to keep his family and friends updated. Years later, those journal entries inspired his book with the dream to help other people through their struggles with illness.

Ted wrote his first journal entry shortly after being diagnosed. It started as a way to keep his family and friends updated on his journey, but quickly became the main source of support from his loved ones. “CaringBridge ultimately became my lifeline,” says Ted. “It allowed me to connect to everyone in the normal world…but it also became the place for my support army to post words of encouragement, letting me know what was going on ‘out there’.”

Re-connect with your experience

Fast-forward to about 8 years after his transplant, Ted was feeling frustrated with the effects of graft-versus-host disease (GVHD) and finding his “new normal.” He realized he was starting to forget the memories and life lessons from his journey. So, he decided to look back at his CaringBridge entries. “I was hesitant to cast myself back into the darkest days of my life to re-live the pain and sadness,” he says, “However, I wanted to re-live the hope, joy, and love that I felt throughout, and the many moments that molded the person I have become.” Re-living those memories and reflecting on them was a way for him to explore his emotions during his recovery.

While Ted was re-reading his journal, he noticed that there were things he wanted to write more about. “So,” he says, “I just sat down one day and I started to write.” To him, writing served as a way to heal and re-connect with his experience. What started with sharing a stapled copy with a couple of close friends, resulted in a published book, “My Extraordinary Demolition.”

Share your experience to help others… and you

Ted remembers being sick in the hospital, feeling isolated with very little information about the disease. He wanted to use what he’s learned to help other people during their transplant journey. He says, “I had been told by my doctor that people survive this illness, but I couldn’t get connected with someone. After my transplant, I wanted to be that survivor to talk to patients.”

Whether it’s been 6 months or 6 years since your transplant, you’ve come a long way. While most other people may not understand what you’ve been through, there are other transplant recipients out there who get it. Sharing your experience can help someone else who may be about to embark on their own journey, or in the midst of it. But it can also help you, too. Ted says, “I love helping people cope with issues after transplant because I dealt with them, too. Sharing my story not only helps the other person but it also helps me as I’m coping with my own recovery.”

Find what works for you

Thinking about sharing your story? Consider what information you want to share and how you’d like to share it.

If you’re comfortable sharing with close friends or family members, consider writing them a letter, an email or inviting them over for dinner. It can bring you closer with to your loved ones and they can better support you if they understand what your experience has been.

If you’re comfortable sharing with a small group of people, consider joining a support group. It can be a great way to connect with others that who understand what you’ve been through. Even if you don’t need the emotional support, sharing your experience can help other group members through their struggles.

If you’re comfortable sharing with a wider audience, consider:
• Writing to your local paper about transplant from a survivor’s perspective
• Sharing on social media, like Facebook

Today, Ted continues to share his story any way he can. He offers one last piece of advice, “There is nothing to lose and everything to gain by sharing your story. And, if you’re helping someone else, it’ll make you feel better. Absolutely guaranteed.”

The Be The Match Patient Support Center offers free:

An unexpected bond

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Latral

Latral, blood stem cell recipient

Latral always knew helping others was her calling, which explains her 20 years of experience in the medical field. She is the head dialysis technician at Virginia Commonwealth University Health System. In 2014, Latral and her husband, Norman, were soon to celebrate their second anniversary with a romantic getaway. Latral fell ill and knew something wasn’t right. Excruciating pain led to a canceled getaway and a trip to the emergency room instead. Latral thought she may have an ulcer, but it proved to be something much worse.

Latral was then diagnosed with acute myeloid leukemia (AML). She was determined to get this behind her, so she could go on with what she felt she was meant to do in this world, taking care of others. With further appointments, Latral learned her cancer had taken over 98% of her body, devouring her red blood cells.

“How long will I be here?” she asked the nurse from her hospital bed.

Without immediate chemotherapy, she had a 4-6 week prognosis. The nurse patted her head, as she was going to be there awhile. Latral longed to get back to her patients, taking their vitals, double checking their monitors, praying with them, and more.

Some days, she slept 16 hours. She was always in pain, from head to toe. Chemotherapy wiped out her entire immune system. After chemotherapy, Latral would need a blood stem cell transplant. At this point, her friends, family, community, and even strangers knew her story. It was no secret that she needed a blood stem cell donor, but it was also no secret the chance of finding one was low. Her siblings were not matches, and Latral knew what a stranger would have to go through to help her.

“Who had that kind of time?” she thought.

Latral turned to prayer. She prayed for herself, and her potential donor. Against all odds, a donor stepped up. This donor was a perfect match for Latral.

The chemotherapy wiped out her leukemia, but unfortunately, when she was ready to have her blood stem cell transplant, Latral’s leukemia returned. Nine months later, after her second round of chemotherapy, she was ready to receive her new blood stem cells, and her donor was also ready to donate.

The operation was a success.

“Who was this individual?” she thought, as she prayed for their healing as much as she prayed for her own.

Raykell

Nearly a decade ago, Raykell had a very close friend in need of serious help. Her young son needed a blood stem cell donor. Raykell joined the Be The Match Registry® in hopes of being his match, but unfortunately, she couldn’t help. The young boy passed away soon after. Fast forward to 2014 and Raykell found herself at church during a Be The Match Registry drive. Her pastor was encouraging people to join the registry and explaining the importance of people of color being blood stem cell donors. She didn’t stay long, as she knew she was already registered.

The Tuesday following that service, Raykell got the call from Be The Match. She was potentially a match for someone in need. While on the call, fear took over Raykell’s body. Her biggest concern was how much donating may hurt. While listening through the phone, Raykell was convinced she would say no. She was currently in a bad family situation, and fear was getting the best of her.

Raykell, blood stem cell transplant donor (third from left), with her transplant nurses

But then, something different happened. In that same moment, Raykell felt God speak to her, telling her he had prepared her for this. Suddenly, her faith took over, and all of her fear diminished. She said yes, and went through with what she now calls an “experience of a lifetime.”

Raykell’s initial testing was a long process. All she knew about the patient she was about to help is that she had leukemia. Going into her donation, Raykell was nervous about being awake and worried about being in pain. The nurses made the process easier than expected, and she overall had a good experience. She felt very tired afterwards, but returned to work two days later without difficulties. A lot of people told Raykell how proud they were of her for agreeing to go through with donating her blood stem cells. Many also shared they would not have been able to go through with it as she had.

Coming together

After the initial waiting period, Latral was allowed to collect her donor’s information. She learned her donor’s name and location, and was finally able to reach out to Raykell. In 2015 the two of them connected via phone, and from there, a friendship began. They became fast friends, talking on the phone daily, and looking forward to meeting for the first time.

“I had to ask her what made her make such a sacrifice for someone she did not even know.” said Latral.

“I did not know I would feel so grateful for going through this experience. The best part was hearing my recipients voice for the first time, saying ‘Thank you so much for giving me another chance at life.'” She shares how Latral’s family has thanked her and made her feel as if she has done something remarkable. She feels God prepared her all those years ago to help someone in need.

“It didn’t matter that I didn’t know who it was. God knew.” shared Raykell.

In 2018, Latral and Raykell were given the opportunity to meet for the first time at the Be The Match New York Soiree in front of a room full of Be The Match® supporters. The photos of the two of them embracing for the first time are more than words can describe, and something nobody who witnessed it will ever forget.

Now, an indescribable bond between two women has begun.

Latral (left), meeting her blood stem cell transplant donor, Raykell (right)

Latral (left), meeting her blood stem cell transplant donor, Raykell (right)

Raykell (left), blood stem cell transplant donor, with her recipient, Latral (right)

Hearst Foundations award $200,000 grant to support the Amy Program

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Hearst Foundations award $200,000 grant to support the Amy Program

Be The Match® is thrilled to be the recipient of a $200,000 grant from the Hearst Foundations, awarded to Be The Match Foundation® to support the Amy Strelzer Manasevit Research Program (Amy Program). This increased investment from Hearst Foundations comes at a critical time as Be The Match Foundation expands support for Amy Scholars from 3 years of funding to 5 years. The Hearst Foundations’ commitment to the development of early-career investigators studying post-transplant complications furthers the

Amy Strelzer Manasevit, blood stem cell recipient

research that leads to critical discoveries, helping more patients live longer, healthier lives.

“We are proud to be associated with the Amy Program,” said Hearst Foundations Executive Director, Paul “Dino” Dinovitz. “The Hearst Foundations share Be The Match’s commitment to eliminating health care disparities and ensuring access to high-quality care for low-income populations. Supporting the development of young medical investigators will help create a broad and enduring impact on the nation’s health.”

The Amy Program is the only U.S. clinical research program dedicated exclusively to discovering treatment and prevention strategies for post-transplant complications while developing the next generation of transplant physician-scientists. Amy Program researchers dedicate their careers to:

  • Finding solutions that make it possible for thousands of patients to avoid dangerous post-transplant complications
  • Improving treatments to help patients overcome complications like relapse, infection, and graft-versus-host disease

The Hearst Foundations’ grant will help these investigators establish their labs, build their portfolios, and publish the results that position them for tenure-track positions and future funding. This investment in research is key to raising the rate of “event-free” survival for our core patients by 25% over the next five years.

To learn more about how you can provide critical funding to help improve outcomes for patients in need of a life-saving blood stem cell transplant please contact Amy Conner at aconner@nmdp.org or (763) 406-8748 | Toll Free: (800) 507-5427 Ext 8748.

About the Hearst Foundations

The charitable goals of the Hearst Foundations reflect the philanthropic interests of William Randolph Hearst, with a focus on ensuring that people of all backgrounds have the opportunity to build healthy, productive, and inspiring lives. The William Randolph Hearst Foundation and The Hearst Foundation, Inc. are independentprivate philanthropies operating separately from the Hearst Corporation.

Living with chronic GVHD of the eyes

Posted January 4th, 2019 by Be The Match and filed in News
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Nearly 10 months after his transplant, Chris was back working in the office when he caught a cold from a co-worker. “My donor immune system did what it was supposed to do,” says Chris. “It rose up and fought off the illness, but then it didn’t calm down.”

Thinking his dry, red eyes were just symptoms of a cold, Chris didn’t think of chronic GVHD. Fortunately, his doctor did. During a regular appointment 2 weeks later, his doctor noticed the symptoms and diagnosed it as chronic GVHD.

“So I started on a stronger dose of prednisone. It had a pretty wicked effect on my body. But it did the trick,” Chris says. He only needed treatment for a few weeks, but many people need treatment for months or even years.

Keep an eye out for symptoms

Chronic GVHD of the eyes happens when the donor’s cells attack the surface of your eyes and your tear glands. According to Dr. Sandeep Jain, Professor of Ophthalmology at the University of Illinois, GVHD of the eyes is common for patients who’ve had an allogeneic blood or marrow transplant (BMT). The greatest risk is between 7 months and 2 years after transplant.

Signs to look for include:

  • Red and/or swollen eyes
  • Discharge
  • Eyes feeling itchy, gritty, painful, or sticky
  • Sensitivity to light
  • Blurry vision

Dr. Jain says, “The best way to lower your risk of developing severe GVHD is to catch it early and to start treatment right away.”

Early diagnosis is key

Dr. Jain recommends routine eye exams before transplant and every 3 months after. If you have any symptoms, get an eye exam right away. Don’t wait for your next appointment. “Eye GVHD can get worse quickly, so early diagnosis and treatment is the most effective and important strategy,” explains Dr. Jain.

If you haven’t had GVHD of the eyes, remember to be alert to any new eye symptoms. Chris’ advice is to, “Identify the symptoms and the root cause early. I initially thought my symptoms were from the cold I had. I didn’t realize it was GVHD until I went to the doctor.”

Treating chronic GVHD of the eyes

For many people, medicated eye drops treat the GVHD. If the GVHD is severe or doesn’t get better, an ophthalmologist (eye specialist) can recommend other treatments. Dr. Jain notes that serum tear eye drops (made from your own blood) can help if the GVHD severely damages the eye surface, and special contact lenses (soft or scleral) can help with severe eye pain.

Overall, chronic GVHD of the eyes is treatable, but it can take time to fully resolve. “With proper treatment,” according to Dr. Jain, “most patients do well, but many need ongoing treatment with some eye drops for years.”

Fortunately, Dr. Jain and other researchers are studying new treatments for GVHD of the eyes. “My laboratory has discovered how neutrophils (a type of blood cell) affect the eye surface,” which has led to clinical trials in the United States. Find a clinical trial for GVHD at jcctp.org.

Coping with symptoms

Even with treatment, GVHD symptoms can still be challenging to manage. Chris used a saline solution to flush out his eyes and clear away mucus. It also changed his appearance. “I’m so used to wearing contacts. It was a change in my image to wear glasses. It was the hardest thing to adjust to,” he said.

One day, before his GVHD was diagnosed, Chris was on the local news doing an interview. “I was sitting right next to the interviewer, but I never looked him directly in the eye. I was ashamed to have him see me like that. My eyes were so red.”

Fortunately, his symptoms cleared after a few weeks of treatment. But many people need treatment for months or years. It can be hard to cope with the symptoms and effects of chronic GVHD for this long. Talking with someone who understands may help. The Be The Match Patient Support Center Peer Connect program can connect you with someone who’s had GVHD of the eyes or a licensed social worker for support.

Questions to ask your doctor

Ask your doctor about your GVHD treatment options. According to Dr. Jain, it’s “best to seek treatment at a center that has experience with GVHD of the eye because some ophthalmologists may think of eye GVHD as just another dry eye.” If this happens, you may not get an effective treatment and your symptoms may get worse.

Here are some questions you may consider asking your doctor:

  • Could my symptoms be early signs of chronic GVHD of the eyes?
  • How much experience do you have treating chronic GVHD of the eyes?
  • Can you refer me to an ophthalmologist who specializes in GVHD?
  • What are all of my treatment options?
  • Are there clinical trials that could help me?
  • How long will I need treatment?
  • What else can I do to ease my symptoms?

Support and resources for you

The Be The Match Patient Support Center offers free support and resources to help you learn about and cope with chronic GVHD.

Chemo brain: Learning how to cope

Posted January 4th, 2019 by Be The Match and filed in News
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Are you having a hard time staying focused or remembering things? Do simple tasks take much longer than they used to? You may be experiencing a side effect of chemotherapy, often referred to as “chemo brain”. Chemo brain can be manageable, but coping with its emotional effects is not always easy.

The following are excerpts from an interview with Hailey Hassel, M.S.W., L.G.S.W., BMT Social Worker in our Patient Support Center.

What advice do you have for someone struggling with the emotional effects of chemo brain?

Hailey: Chemo brain can make it more difficult for you to do everyday tasks. This can lead to emotions like anxiety, grief and frustration. You may find yourself feeling angrier or more easily tearful than you used to. Be patient with yourself and accept where you are in your recovery. It’s not likely to be your reality forever, but it is for today.

Find strategies that will make things easier. Some people use humor to cope with frustration. Our survivorship chats and support groups are a good way to connect with other transplant recipients and learn new coping strategies. It may help to tell your loved ones what you’re going through so they can better support you. It’s also important to tell your doctors so they can rule out specific causes (like a medicine you are taking) and give you tips for how to cope.

For someone experiencing chemo brain, what advice do you have about going back to school or work?

Hailey: When returning to school or work after transplant, it can be hard to keep up with required tasks and demands. Consider these tips:

  • Start out slowly.
  • Create a To-Do list.
  • Use sticky notes to remind yourself of important items.
  • Reference your calendar throughout the day.
  • Ask your teacher or employer about accommodations that could help you succeed (such as recording meetings, or organizing your work area for better concentration).

You may not be able to fill the same role after transplant and may need to redefine your purpose, or even search for a new one. It can be hard to accept this reality. It may even feel like you’ve lost a part of your identity. It’s OK to acknowledge and grieve these losses. Talk about what you’re feeling with your caregiver, a close friend or family member.

How do you recommend someone talk about their chemo brain with co-workers, classmates, teachers or managers?

Hailey: You may choose to say something like, “Since going through treatment, my brain works a little differently. I’m going to take some notes during our conversation so I don’t forget anything.” If you’re worried about disclosing your story to others at school or work, it’s important to know you’re not obligated to explain yourself. Some people find it helpful to have quick responses ready so they’re better prepared if something comes up. For example, you could say, “the thought escaped me” or “it’s been a long day.” Ultimately, you get to choose what you want to share.

For parents of children going back to school, it’s important to tell your child’s teacher what to expect and the best way to handle any situations that may arise. You don’t need to tell the full story – just what’s important for the teacher to know so that your child can succeed. For example, you could say:

“__________ is on a new medicine that affects his/her thinking. He/she may be a little more ‘spacey’ or forget things sometimes. He/she typically feels __________ when this happens. I’ve found it helpful to _________.”

How can caregivers support loved ones struggling with chemo brain?

Hailey: Be patient with your loved one! The effects of chemo brain can make it difficult to do certain tasks. Your loved one may feel embarrassed or frustrated. Support them as they do things on their own, even if it takes longer than it used to. It’s OK for them to make mistakes. Note which coping and management strategies work best for them (for example, breaking tasks into smaller pieces and using sticky notes for reminders) and encourage them to use these during daily activities.

What else do you want someone to know if they’re struggling with chemo brain?

Hailey: You can be thankful for your transplant and still be angry about the side effects. That’s OK. Tell yourself, “I don’t have to like this reality, but it’s where I am today. I’m going to try to make this work.” Find strategies that work best for you, and incorporate them into your day. Pay attention to your body; it will tell you when you feel the most productive. It’s OK to take breaks when you feel tired. Lastly, be patient with yourself – you’ve overcome so much!

What tips have worked for you? Share in the comments!

The Be The Match Patient Support Center offers:

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Transplant recipient, teacher and now ambassador advocate

Posted December 10th, 2018 by Be The Match and filed in News
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When Elle Crofton was 25-years-old, she got news that she never expected to hear.

Her doctors diagnosed her with myelodysplastic syndrome (MDS), a blood cancer that causes bone marrow failure and can progress to acute myeloid leukemia.

For her age and gender, the illness was shocking, and rare.

“I was diagnosed with a blood cancer that is mostly diagnosed in men over the age of 65,” she said. “It’s not something that you think about every day, a 25-year-old female getting a blood cancer, but it happened to me.”

Initially, Elle was able to treat her MDS with medication. When that stopped working, her medical team told her that she would need a bone marrow transplant.

Fortunately, a matching donor was found and on May 14, 2015, Elle had her life-saving bone marrow transplant at MD Anderson Cancer Center in Houston, one week before her 26th birthday.

“When I found out I had a match, I was really excited,” she said. “It was overwhelming because I don’t think you really understand all that happens and goes into it. Realizing that it was going to happen was an amazing feeling.”

Today, over three years post-transplant, Elle is back to her passion – being an elementary school teacher.

“I am back in society, back teaching doing something I love, and to be able to do that for others is what lawmakers should look at,” she said. “To have more lives saved is just so crucial – it’s such an easy thing for people to do, to donate bone marrow that I don’t know why you wouldn’t support it.”

As she continues post-transplant life, Elle said she is eager to give back and help patients-in-need, like she once was.

“Being an advocate for Be The Match means that I’m supporting a program that helped save my life,” she said. “They gave me life and I’m hoping that I can just help others.”

Advocacy Spotlight – Bob Panza

Posted November 19th, 2018 by Be The Match and filed in News
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Bob, a Be The Match Advocate

Tell us about yourself: I have been married to my lovely wife, Ann for almost 39 years. We are the very proud parents of two kids – Melissa and Nick. Both are married and we have been blessed with four beautiful grandchildren. I served as a municipal police department captain in Southern California for 30 years. I retired almost 11 years ago and am thoroughly enjoying life!

How did you connect with us? About 14 years ago, a fellow police officer’s teenage daughter, Brandii, was diagnosed with cancer. She and my daughter were close in age. Melissa and I worked with my department to organize a donor drive where we had close to 300 people join the Registry.

Unfortunately, Brandii never found a match and she passed away in 2005. At the time, I was attending a training course at the FBI Academy. Brandii inspired me to organize a donor drive in her honor and we had about 250 more people join the registry.

Tell us about being a volunteer courier: In 2006, the NMDP formed a volunteer courier program. Both Melissa and I attended the training. I have completed about 300 domestic courier trips and just returned from my 60th international trip. That is in excess of 1.5 million domestic and international miles in the air. My longest trip was from Western Australia to the East Coast of the United States, which was well over 2,300 miles in the air.

Modern long-haul airplanes carry over 300 passengers. When on those planes, I often think about the patients on the receiving end of one of those 300+ courier trips I’ve been privileged to complete. I visualize them sitting on the plane with me – men, women, children and infants. I am awestruck and humbled to think about them and their families. I am extremely grateful to be entrusted to play a small role in those people’s lives. Containing my enthusiasm and passion for what I do, is the only hard part.

Tell us about being an advocate: Initially, I was a bit nervous simply because I wanted to be the best representative of the NMDP/Be The Match as I possibly could, so I put a lot of pressure on myself at first. But then I took a deep breath and let it sink in that I was advocating for a great cause which I believed in very deeply. Once I let that sink in and envelope me, I merely rehearsed what we had been taught back in September and my apprehension turned into sheer exhilaration, excitement and anticipation.

What has your work with Lawmakers been like? So far, there is one lawmaker who has committed to co-sponsoring HR4215. I am continuing to reach out to the other three lawmakers and their staff members to keep HR4215 on their radar. I believe my face to face meetings were critical in helping open the door to communication and personal connection, along with continued email contact since those meetings.

What advice do you have for those wanting to be advocates? The best advice I can offer when advocating for the NMDP/Be The Match, is simple and is also the same best advice in how to live one’s life; BE YOURSELF. We are each endowed with our own unique personalities, painful experiences, fears and emotions. We all deeply believe in the mission we are jointly trying to achieve, so use your personal experiences regardless of their outcomes, to help get our message out to those empowered to act on them. In that way, those experiences and all those individuals we know and love who shared those experiences with us, can join in helping get that message out. In my situation, I am able to keep Brandii’s legacy alive and take comfort in knowing that her life has touched countless people whom she’ll never know.

Transplant recipient advocates for access to fertility preservation

Posted November 14th, 2018 by Be The Match and filed in News
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In May 2010, Katherine Frega was a high school junior who had spent the past year dealing with a serious illness with no explanation for her symptoms.

When her doctors were finally able to give Katherine and her family a diagnosis, it was not good news. She had Stage 2B Hodgkin’s Lymphoma.

While Katherine said her immediate thoughts were around chemotherapy and what she would need to survive, her father asked one question that has forever impacted her future in a way that the then 17-year-old had not considered.

“The initial diagnosis meeting was such a whirlwind,” she said. “Suddenly, my dad looked at my doctor and asked, ‘How is this going to affect her ability to have children?”’

Although Katherine said fertility preservation was “not on her radar” originally, she understood the stark reality of why she needed to consider it once her first round of chemotherapy was complete and her doctors recommended a blood stem cell transplant.

“We sat down with my BMT doctors,” said Katherine. “And they said, ‘The drugs we have given you already will cause you to go into ovarian failure – if you have not yet. It is just a matter of when.’ That is when we said ok – let’s do this if we have a chance.”

When her doctors told Katherine that fertility preservation was not covered under her mother’s health insurance, the medical team then put her in-touch with the Livestrong Foundation – which paid for some of Katherine’s egg retrieval cost.

“It was still a really big financial barrier for my family,” she said. “I didn’t even know if I was going to make it through the bone marrow transplant.”

With her sister as her donor, Katherine had her first transplant in January 2012. It did not engraft and three months later she had a second transplant. After overcoming graft versus host disease and recovery from her transplant, Katherine is now focused on her future and in her third-year of medical school.

“I was determined to go to college,” she said. “I got out of the hospital and started school two days later at Syracuse University.”

Having her medical team near college made it possible for Katherine’s quick transition into student life and since then, she has never looked back. Now in her third year of medical school, Katherine said she is embracing all that life has to offer.

“I scrubbed in yesterday and delivered two babies,” she said. “To think that this is an option for me, in my career and potentially in being a mother, is really special.”

While Katherine was able to get some financial assistance with her egg retrieval, she does have to pay to an annual fee for cryopreservation. Despite the fee, Katherine said that she is forever grateful her father – who sadly passed away unexpectedly in 2014 – had the realization to ensure her future as a mother.

“I am so happy that when my 19-year-old self could not think about it, my father had the foresight to make this an option for me,” she said. “It gives me a sense of relief when I do want to start a family, and know that he really wanted that for me is a big deal.”

Coping with anxiety after transplant

Posted November 8th, 2018 by Be The Match and filed in Patient Stories
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Have you worried about the future? Felt anxious waiting for biopsy results? Or had persistent thoughts about graft-versus-host disease (GVHD)? You’re not alone. Sometimes anxiety is helpful. For example, a little bit of worry about infection after transplant can be a reminder to wash your hands. But too much worry about infection can slow your recovery if it limits your normal daily activities.

Symptoms of anxiety can include:

  • Difficulty falling or staying asleep
  • Dizziness
  • Feeling so restless you can’t sit
  • Irritability
  • Muscle tension
  • Nervousness
  • Trouble concentrating
  • Upset stomach

 

Explore different ways to manage anxiety to find what works best for you

There are several ways to help manage anxiety. Sometimes anti-anxiety medicines can help. There are many other types of interventions, coping mechanisms and resources that can help you as well. For example, you could:

  • Go for a walk.
  • Meditate.
  • Do short breathing or relaxation exercises. Find some on YouTube.
  • Listen to soothing music.
  • Talk to someone you trust, or even a pet, about how you feel.
  • Get support through free Be The Match Counseling Services.

If you’re not sure how to start talking about anxiety, use these conversation starters:

  • “I haven’t been feeling like myself lately. I’m concerned my anxiety is getting out of control.”
  • “What do you recommend so I don’t feel worried all of the time?”

If you’re concerned that a loved one is struggling with anxiety, you could say, “You don’t seem like yourself. How are you feeling?”

 

One woman’s experience with anxiety after transplant

Jodi, transplant recipient

Jodi had a transplant in 2017 for myelofibrosis. She described coping with uncertainty as one of the hardest parts of recovery. “There’s constant worry and recurring thoughts of what my future will look like and whether the GVHD will ever disappear. It’s like a snowball effect,” said Jodi.

Sometimes certain events triggered higher anxiety levels. For example, she was more worried anytime she needed a bone marrow biopsy. “I was anxious for the whole week,” she said. Other times, her GVHD medicine, prednisone, heightened her anxiety.

Jodi did several things to help ease her mind, including talking with a supportive group of loved ones and practicing yoga. Having a mantra, or phrase to repeat, helped her through some of the toughest parts of recovery. “Whenever my mind starts to wander, the mantra keeps me from drifting into negative thoughts,” she said.

 

Jodi’s mantra

“I am healing.

My cells are soaring like eagles to normal.

I am getting stronger every day.

I am healing.”

 

Jodi’s advice is to talk to someone. “Communication is key. If you sit in your worries and let them grow, it’s not going to get better. Be proactive. Talk to a counselor,” she said.

For free, confidential support, contact Be The Match Counseling Services: