Feeling thankful during a difficult transplant recovery

Posted November 6th, 2017 by Be The Match and filed in Patient Stories
Show Content

It’s not unusual for people to feel thankful to be alive after overcoming a life-threatening illness. But being thankful after a blood or marrow transplant (BMT) can be difficult if you are also coping

David, transplant recipient, with his sister and parents

with negative physical, emotional and financial issues after a transplant.

Read on to get expert advice from a BMT Social Worker on how you and your loved ones can feel more thankful even in difficult times.

The following are excerpts from an interview with Olivia Eusden, MSW, LICSW, BMT Social Worker, Patient Support Center, Be The Match®.

Is thankfulness possible for people who have serious complications or challenges after BMT?

Olivia: Feeling grateful can seem nearly impossible when you have serious complications or challenges after BMT. Thankfulness is possible, it just may look different from before. For protective reasons, we often resist the pain caused by serious life challenges. But, if we surrender to the pain, it’s possible to feel hope that things will get better someday – and if not better, easier.

Recognizing even small feelings of hopefulness can allow you to move out of the victim space and into the “survivor” role. As a survivor, you might find that you take nothing for granted. You also might find that BMT gave you more perspective, brought you closer to others, afforded you more patience, or made you more empathetic. Perhaps you’re more resilient and open to new experiences than you once were. All of these changes you notice about yourself after transplant are reasons for gratitude.

 

What are some ways people can cope with ongoing challenges after BMT?

Olivia: Ongoing challenges after BMT can feel defeating. You might feel isolated in your grief and pain. It’s important to remember that you aren’t going through this alone.

If it feels like others in your support system “don’t get it,” try connecting to a community of people who share your experiences. Find a support group through your transplant center, or register for Be The Match Survivorship Chats.

Support groups are safe spaces to share your fears and frustrations without feeling judged or misunderstood. It can also be a place for you and other patients to share what you’ve learned, suggest creative solutions to common problems, and provide emotional support. Participants in a support group may understand what you’re experiencing in ways that other people might not.

 

What advice do you have for someone struggling to feel thankful after BMT?

Olivia: If you’re struggling to feel thankful after BMT, try to redefine “gratitude.” At another time in your life, showing gratitude might have felt important in situations such as receiving birthday presents, or when someone cooked you a meal.

Now, in more challenging times, appreciation and gratitude happens on an entirely different level. Gratitude might look like thankfulness for breath and vitality, or an appreciation for waking up in the morning and going to bed at night.

Some patients share that instead of wishing their experience with BMT away, they learned to take illness/recovery as an opportunity to slow down, regroup, and listen to what was going on for them personally. In that sense, illness became a tool for personal growth and discovery that may not have occurred otherwise.

 

What advice do you have for someone feeling pressured to express thankfulness after BMT?

Olivia: With Thanksgiving in view, the cultural nod to thankfulness is blatant. If you receive or feel pressure around the holidays to express thankfulness, recognize that you may not be in a place where gratitude feels possible right now.

Gratitude is personal and will vary from person to person based on past experiences, personality and circumstances. Give yourself permission, or ask for permission from a close family member or friend, to feel less-than-grateful at this time.

No matter where you are in your survivorship, if you’re feeling like your thankfulness is lackluster, it can be meaningful to spend just one moment each day listening to what your body is telling you without judgment. Notice something you weren’t aware of before, and explore the possibility of carving out a tiny space for gratitude just for having this daily ritual.

One day, you will be able to find a bit of gratitude and it may make all the difference.

___________________________________________________________

The Be The Match Patient Support Center provides support, information and resources for transplant patients, caregivers and families.

Contact us using the information below to register for a Survivorship Chat, talk to another BMT recipient or caregiver through the Peer Connect program, or get one-on-one telephone counseling support from a licensed clinical social worker. All services are free.

 

A Life-Saving Talley

Posted November 15th, 2016 by Be The Match and filed in Donor Stories, News, Patient Stories
Show Content

37 seasons. 256 wins. One national championship. More than 70,000 potential lives saved. These are just a few accomplishments of Andy Talley, former head football coach of the Villanova Wildcats. Talley retired from coaching following the 2016 season, but his commitment to saving the lives of those suffering from blood cancer continues long after he walked off the field for the last time.

Answering the Call

In 1992, Talley was listening to the radio when he heard a fact that would change his life: Every three minutes, someone is diagnosed with a blood cancer, like leukemia or lymphoma. For tens of thousands of these patients a bone marrow or umbilical cord blood transplant could be their cure – yet only half receive the potentially life-saving transplant they need.

“When I heard the devastating odds of those in need of a transplant, I immediately knew that I had to do something,” Talley said. “With 90 young healthy football players on my team and the power of collegiate football behind me, I knew I could recruit donors and hopefully make an impact.”

Coach Talley at presenting Be The Match with a $125,000 check

Coach Talley presenting Be The Match with a $125,000 check

Recognizing that his young and healthy football players had the potential to become marrow donors, and use their clout on campus to recruit others to join, Talley set out to educate his players and the community about the opportunity to save the life of a stranger by joining the Be The Match Registry®.

A Team of Ideal Donors

Talley had an important audience on his team. 18-24 year old males are the ideal bone marrow donors. In general, the younger a person is, the healthier their marrow and because men tend to have more body mass than women, they have more marrow to give.

Additionally, since patients in need of a transplant are more likely to match someone who shares their ethnic ancestry, the diversity of his team played an important role, too. Currently, African American patients have the lowest odds of finding a match compared to all other populations and make up only 6 percent of the registry, a fact that stunned Talley.

Beyond recruiting his players to join the registry, Talley began hosting donor registry drives on the Villanova campus and raising funds to cover the costs of tissue typing. At every drive, Talley emphasized how easy it is to join the registry and potentially save a life—all it takes is a swab of cheek cells; no blood is drawn. In 2008, Be The Match® approached Talley with the idea of working together to expand his on-campus drive efforts and the “Get in the Game. Save a Life” (GITG) initiative was born.

Spreading the Word

Since then, more than 75 other college football programs have enlisted to participate in GITG, which has led to nearly 71,000 new registry members, more than 300 of whom have matched with and donated to a patient in need.  One of these donors is Chicago Cub and former Villanova football and baseball star, Matt Szczur, whose donation story was recently featured by ESPN.

“Coach Talley gave me the opportunity to save someone’s life,” Szczur said. “What’s more motivating than that?”

In addition to his involvement with the GITG initiative, Talley also runs The Andy Talley Bone Marrow Foundation which has donated more than $375,000 to assist with covering the costs of adding new members to the registry.

The Commitment Continues

It’s important to Coach Talley that his mission of getting more committed donors on the registry doesn’t retire when he does. His successor, Assistant Coach Mike Ferrante, sits on The Board of Directors of The Andy Talley Bone Marrow Foundation, and he will continue to share the message that anyone can save a life. And Talley plans to deepen his involvement supporting this worthy cause after his final season with the Wildcats.

“With a lot more time on my hands, I am looking forward to increasing awareness and recruiting a ton of coaches to join our Get in the Game initiative,” said Talley. “It is my dream to have every college football team nationwide host a drive and join our passion of saving lives.”

To join the registry visit Join.BeTheMatch.org/GetInTheGame2017

Sickle cell disease conquered through transplant

Posted September 13th, 2016 by Be The Match and filed in Patient Stories
Show Content

As a young adult in her early twenties, Constance was embarking on the next stage of an already successful modeling career. Photos of her had already appeared in magazines, and she was beginning to work with designers from popular reality television shows.

But, the sickle cell disease (SCD) she had been coping with since birth suddenly got worse and caused her modeling career to take an unexpected detour. “I tried to work through my disease and the pain, but my body just couldn’t take it,” she says.

sickle-cell-illustration_300pxSCD is an inherited blood disorder where red blood cells become hard, sticky and sickle-shaped. These cells can’t carry oxygen well and they block blood flow. Patients have repeated episodes of excruciating pain and worsening permanent damage to vital organs.

So instead of runways, TV sets and photo shoots, Constance was spending more and more of her time in hospitals due to pain episodes and other harmful effects caused by the disease.

“I was either hospitalized anywhere from 3 to 10 days or rushed to the ER every month,” she recalls. “I had to bow out of the second half of my modeling contract because I couldn’t get healthy enough to even leave my house, let alone the state.”

Transplant offers hope of a cure

Today, Constance is a healthy 29-year-old ─ and one of a growing number of people with SCD who had treatment with a blood or marrow transplant, the only known cure for SCD.

Constance had transplant in 2012, when she was 25 years old. Her donor was her younger sister, Samantha, who was a 10 of 10 HLA (human leukocyte antigen) match.

Constance, transplant recipient

Constance, transplant recipient

Like many transplant recipients, Constance calls the day of her transplant “my new birthday” and her second chance at life. And like many transplant recipients, it also took a while for Constance to adjust to life after transplant. Constance remembers that it was only after her “first new birthday,” when she was finally off of all her medicines, that she told herself, “Okay, this is real. You have a life now.”
And her life now is very busy. Her modeling career is back on track and she’s sharing her experience with others ─ including writing a book.

Reflecting back on her time before transplant, when SCD limited her modeling career, her social life, and her plans for the future, Constance says she feels thankful every day. “I never ever could have imagined that I would have the life I have now, and that I would be able to do the things I can now.”

September is Sickle Cell Disease Awareness Month – help us spread the word by sharing our Facebook post about SCD awareness through our Patients Connect page. And to learn more about Constance’s story, visit her website at road2thecure.com.

Love Conquers All: BMT Nurse Shares Her Personal Transplant Journey

Posted February 5th, 2014 by Be The Match and filed in Patient Stories
Show Content

Clint-and-Becky_203px_v2Becky woke up feeling like she had been hit by a car when she was just two weeks into her freshman year of college. “Everything hurt and I had terrible stomach and back pains,” she says. Just days later her world was turned upside-down when she was diagnosed with chronic myeloid leukemia, rare at age 18, and told she needed a bone marrow transplant. “I was shocked and scared. Bone marrow transplants were still considered a newer treatment option at this time, but it was the only curative course of action,” says Becky. Luckily, Becky’s sister was a perfect match and in January 1992, she received a life-saving transplant at St. Jude Hospital in Memphis, Tennessee.

She returned to college that May with a new passion for life. “My life had changed so drastically. I went from being 18-years-old to an adult in just a few short months,” says Becky. Feeling blessed, Becky changed her major from music to nursing, wanting to help patients like her.

In her final semester of college, Becky visited her doctor for her three year post-transplant check-up and received heartbreaking news. She had relapsed.

Adding to the heartache, Becky had recently joined a singles group at her church and had fallen in love with an amazing man named Clint. “We had been dating a little over a year when I found out I had relapsed and I didn’t know what this meant for our future.” A few days later, Clint proposed saying, “I don’t care if we have three weeks, three months or three years. All I know is I want to spend it with you.”

Her heart filled with hope, Becky gathered her strength and had her first DLI, donor lymphocyte infusion, a treatment option that eliminates the need for a second marrow transplant in some patients. A few months later, she graduated with a degree in nursing and was married the very next day.

But Becky struggled to stay healthy, relapsing and returning to remission six times. “I could never make it past the three year mark and this cycle became my new normal,” says Becky. “My family would joke about the ‘many faces of Becky’ yo-yoing from puffy steroid cheeks, to bald from chemo and appearing totally healthy.” But she remained a resilient fighter with support from her husband, family and her church.

But what really kept her going was her role as a Bone Marrow Transplant (BMT) nurse at Moffitt Cancer Center in Tampa. “The BMT unit is a place that needs hope and, just by looking at me, I give that hope to both my colleagues and patients—I’m someone who has walked in their shoes and truly understands,” says Becky. 

In 2010, after her fifth relapse treated with DLI and drug therapies, Becky’s doctors decided it was time for a different approach. A search began for an unrelated marrow donor and three perfect matches were located. “I felt so lucky,” says Becky.

Becky chose to have her transplant at Moffitt and was admitted as a patient to her very own unit.  “My colleagues are like my family and it was so great to know that everyone was looking out for me. I had so much trust in them.”  Becky experienced some Graft-versus-host disease, a common side effect of an unrelated marrow transplant, but the transplant was a success.

Today, Becky is happy, healthy and has rejoined her team as a BMT coordinator. And, for the first time ever, she sailed past her dreaded three year post-transplant check-up with a clean bill of health.  “All we’ve ever known is sickness, health, sickness, health so Clint and I were too afraid to make long-term plans.” She believes her future is bright. At the top of her bucket list is taking a trip to hug the young military man who stepped forward as her marrow donor and saved her life.

“Life is fantastic and I have been so blessed to share my journey with others,” Becky exuberantly says!

Make a gift in honor of your loved one.

Skin GVHD: How to spot and tips to manage

Posted May 14th, 2013 by Be The Match and filed in Patient Stories
Show Content

Dr. Stephanie LeeGraft-versus-host disease (or GVHD) of the skin is a reality for many transplant recipients. As a common side effect of transplant, it can affect many parts of the body. Do you know how to spot skin GVHD? Do you need advice for coping with the ongoing management of GVHD? Dr. Stephanie Lee and Everett, a  transplant recipient, offer insights and advice to help.

What you should do once a month
Whether or not you’re currently experiencing GVHD symptoms, it’s always important to look for changes.  “The sooner we can treat your symptoms, the better. We want you healthy,” says Dr. Stephanie Lee, Professor of Medicine at Fred Hutchinson Cancer Research Center.

“Once a month, stand naked in front of a mirror and look at your body. Feel your skin. Look for changes. You know your body better than anyone else,” she says.  “If you notice anything unusual, tell your doctor right away.  Don’t ignore early symptoms of skin GVHD, which can include: a rash, itching, thickness, tightening, burning (in rare cases), or problems moving joints.

When it just won’t go away
Everett has been managing chronic GVHD of the skin for the past ten years. While his GVHD has not been severe, it’s certainly been an ongoing challenge. He experienced a defining moment many years ago with his doctor. “After a frustrating episode with my GVHD, I asked if she could just fix it and she said, ‘No. You have this.’ That’s when I really understood that this is something I would have to manage for life.”

Everett, transplant recipientEverett explains that the appearance of his GVHD— loss of pigment (dark and light lesions) on his face, legs and feet—can be uncomfortable at times. He works in sales and often has face-to-face interactions with clients. “It can be an issue,” he says, “People can tell something is going on.”

Scenarios like this can be difficult, but Everett says, “I’m grateful that I have the type of personality that allows me to stay positive and not sweat the small stuff.” He encourages others to have a positive attitude and to work closely with their doctor. “If you can, stay with the one doctor. And always follow doctor’s orders.” Through a referral from his transplant doctor, he’s had the same dermatologist through it all. This relationship has helped him learn to manage his GVHD in new ways, like trying different lotions and ointments prescribed by his doctor.

Dr. Lee agrees that GVHD can be challenging, but working together with your medical team and following precautions like avoiding the sun can make all the difference. “Patients can become frustrated with long-term management of GVHD— especially if treatments aren’t working as well as they once did. But don’t give up. Talk to you doctor and let us find what works best for you,” says Dr. Lee.

Team up with your doctor to find the best treatment
“Many treatments are available but it comes down to what works best for you. Sometimes that means trying different treatments regimens—what works one day may not work as well next month, so tell us how things are going and we can keep trying new things together,” Dr. Lee says. “If a treatment is not working well—don’t try to adjust it yourself, that could be dangerous. That’s what we’re here for—to help you stay healthy and feel better.”

Learn more tips to help prevent and manage GVHD or share your experience with GVHD below.

Craving connections after transplant: young adults reach out to peers for hope and healing

Posted May 14th, 2013 by Be The Match and filed in Patient Stories
Show Content

Matt, transplant recipientMatt’s Story

Adulthood on hold
Matt was on his way to adulthood. He had just graduated from college, was working at a bookstore, considering law school and was enjoying life with his  girlfriend, Cori. That’s when he got the news that changed everything.  He had cancer and needed a transplant.  Suddenly, life as he knew it was put on hold.

“The world was in front of me. You go from being a carefree 20-something, to thinking you might not make it the next two years.”

In an instant, Matt’s plans for the future changed. Instead of hanging out with friends, he was living with and relying on his mom.  He and Cori were spending more time as patient/caregiver than as boyfriend/girlfriend. “We used to spend our weekends going out with friends. Instead, we were at home and she was cleaning my port. It was hard to accept that this was my new reality.” Matt said.

Finding new ways to connect
During Matt’s treatment, his life was consumed with medical appointments and procedures. His friends were enjoying their lives and moving on. “I couldn’t relate to them anymore and I lost many friends. That was isolating.”

Matt had to find new ways to connect with people who could understand what he was going through. He started reaching out to others through adolescent and young adult (AYA) support groups where he found others he could relate to. Without having to explain, they understood his experience.

“Oregon Health & Science University (where he received his transplant) has a great AYA program. I was fortunate that my doctor was so involved in the AYA cancer community. He helped me connect with others like me, and that was extremely helpful. Participating in activities like the river rafting trip was really important for my recovery. Not just physically, but being able to find your new normal–finding fellow survivors who have gone through similar things–is a way to kind of regain your sanity,” Matt said.

Matt’s advice: “It can be lonely, but you are not alone. Find others in the same place as you. Find new friends who understand your story.”

Reclaiming his adulthood
Today, Matt and Cori (now his wife) are enjoying their 30s. They spend time going to movies and meeting friends for dinner.  He says the transplant experience made him see things differently. “It forced me to grow-up and offered a perspective you can’t buy. So I think I have an appreciation for my life and just everything that encompasses that is really priceless.”

Watch Matt’s full story on Insights eCommunity >

 

Kayla, transplant recipientKayla’s Story

Kayla was a senior in high school having fun with her friends and planning her future when she got sick. She was thankful for the gifts of love and support she received from her family, but she was missing something: her friends. She had many friends, but they didn’t stay by her side during transplant. “I would pick up my phone to find someone to call. There was no one. It would have been nice to have some friends to lean on,” she says.

“My mom was there to hold my hand, which made me feel secure. My cousin prayed for me constantly, made me laugh even when I was exhausted, and kept my spirits up. My pastor’s wife kept me wanting to fight, even when I was tired and down.  The nurses also made me feel like they really cared if I survived. Their words of encouragement helped me to understand what was happening to me and what to expect during my treatment,” Kayla says.

Finding peer support
Kayla found peer support through social media. Through Facebook pages like Be The Match Patients Connect and Insights e-community, she found other patients she could relate to and who understood what she’s been through.

Kayla’s advice: “You are not alone. Reach out. Try to contact other patients. It’s helpful to talk with others who’ve been through transplant.  They can relate because they’ve been there.”

The new me
“I just recently started nursing school in January and completed my first semester with straight A’s. Being a patient has motivated me to want to be a nurse because I will truly understand exactly how the patient is feeling. I will be a bone marrow transplant nurse in 2015! If I hadn’t gotten sick and gone through transplant, I would have never gone to nursing school. It’s amazing how things seem so broken for so long when you’re sick, but if you just hang in there, all of the broken pieces come together into something bigger and better than I could have ever dreamed of. I am well on my way to making a difference in the lives of future transplant patients.”

“Transplant changed me completely,” she says.  “I am slowly finding the ‘new me’ and realizing I am in a different place in my life now.”

Join Kayla on the Insights e-community. Start a discussion that matters to you.

 

Social support: tips from Insights e-community
It can be hard for others to see someone they care about go through something so difficult. You may find that some friends will distance themselves, while others are with you every step of the way. Both are normal responses to a stressful situation. Find ways to communicate openly and honestly with your friends.