Adapting to a new family dynamic: When a parent has a transplant

Posted July 6th, 2017 by Be The Match and filed in Patient Stories
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When Mary Clare had her transplant, her only daughter, Twila, was just 4 years old.

Suddenly, the family’s focus of attention and care shifted away from Twila and toward Mary Clare, which resulted in a wide range of changes that touched all 3 members of her family, and their relationships with one another.

My transplant and recovery changed my daughter’s world,” says Mary Clare, “Before diagnosis, Twila was the center of our small family and our days revolved around her school and activities.” But with her cancer diagnosis and transplant, Mary Clare found that she needed to be the center of attention because her successful recovery depended on receiving care from others.

Mary Clare accepted that she needed to rest and receive care and support. She turned to the school, neighbors and community for support. “We moved away from caring for my body and counting cells to nurturing our mental health and relationships,” she says.

She offers this advice to other parents in her situation: Although it is in all moms and dads to protect their children and keep them from harm, shielding them from a serious diagnosis and not talking about treatment is not beneficial. “We chose to be very open and factual about my cancer and transplant,” Mary Clare says.

Mary Clare and her husband found that being honest with their daughter about the science of transplant had an unexpected benefit: Twila developed a fascination with medicine and biology. “My daughter helped me do my physical therapy exercises and learned to assist in changing my IV, “she says, “I found it helpful to give my daughter a role in my care.”

Choosing to be open about her diagnosis and treatment also led Mary Clare and her husband to develop a unique way to help Twila cope with her mom’s situation.

“We used a jar of buttons to talk about feelings and fears,” Mary Clare explains, “Each day, Twila would take a handful of buttons and one by one add them to a jar, naming her fears and concerns one at a time.” Mary Clare says that this activity plus formal play therapy helped Twila manage her anxiety and gave her daughter an opportunity to talk about her own needs.

These steps to manage new family dynamics after transplant worked for Mary Clare. Experts on transplant recovery note that each family is different, and that transplant recipients and their children often need help coping with changes in family relationships.

If you need help coping with family changes after transplant, you’re not alone.

  • Talk to a social worker at your transplant center. They can provide support and help you access local and national resources.
  • Find helpful advice on adjusting to life after transplant on the Be The Match® website.
  • Talk to another parent who’s had a transplant. Our Peer Connect program can connect you with a trained volunteer who’s been there. No matter where you are in the transplant process, transplant recipients like you are available to talk by phone or email, sharing their experience and tips. To request a connection, visit: BeTheMatch.org/peerconnect.
  • Get confidential, one-on-one support from caring experts through the Be The Match® Patient Support Center. We provide support, information and resources for caregivers and families. Call or email us for. We’ll listen and help you find answers. All of our programs and resources are free. Call 1 (888) 999-6743 or email patientinfo@nmdp.org.

How to identify and cope with chronic GVHD of the stomach and intestines

Posted June 30th, 2017 by Be The Match and filed in Patient Stories
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Dominique, transplant recipient (center), with her parents

About 6 months after her transplant, Dominique knew something was wrong when trying to eat caused too much pain.

“I was having a great amount of pain after I ate. I couldn’t drink anything. It hurt too much to swallow,” she says. “So when I told my transplant doctor what was going on, we got a gastrointestinal (GI) doctor involved.”

It was important that Dominique contacted her transplant doctor right away. Getting help from your transplant team as soon as possible means that any treatments they give you will have a better chance to work.

And, involving a GI doctor, who specializes in the stomach and intestines, helped her get the best possible treatment. In Dominique’s case, the GI doctor ordered a colonoscopy and an EGD (a doctor places a flexible tube through the mouth into the stomach and small intestine). Those tests, plus a biopsy (testing a sample of tissue taken from the GI tract) led to a diagnosis of chronic GVHD of the stomach and intestines.

Keeping an eye out for the symptoms

Dominique, now 23 years old, received a transplant for severe aplastic anemia 2 years ago. She offers some advice on how to identify and cope with chronic GVHD of the stomach and intestines.

“Pay attention to your body. If something doesn’t feel right, go get it looked at or checked out,” she says. “Don’t ever feel like you’re making up your symptoms.”

Some of the symptoms Dominique had, in addition to not being able to eat very much, included constipation, feeling sick all the time, and extreme tiredness. “It was just hard because I couldn’t eat. I was getting frustrated. I had to watch what I ate because certain things would irritate it more,” she says.

These symptoms are quite common in people who get chronic GVHD of the stomach and intestines, according to Dr. Alousi from MD Anderson Cancer Center. Other signs to look for include:

  • Bloating
  • Decreased appetite
  • Diarrhea
  • Feeling full after eating very little
  • Nausea or vomiting
  • Stomach pain
  • Weight loss

Dr. Alousi notes that when chronic GVHD of the stomach and intestines is diagnosed, doctors pay close attention to two key symptoms: weight loss and malnutrition. In fact, he says, “weight loss is the main symptom used to measure how severe GVHD of the stomach and intestines is”. He recommends that people “track their weight after transplant and tell their doctor right away about any weight loss.”

Because people can have problems eating after transplant, he also suggests keeping a food diary to help you and your doctors determine the causes of any symptoms or weight changes. You can even use your phone to help. “There are a number of smartphone apps that help you track your diet and keep your nutrition goals.”

Treating chronic GVHD of the GI

To treat her GVHD, Dominique’s doctors prescribed steroids, which is common for this kind of GVHD. The steroid treatments eventually worked for her, but the medicine had some side effects that lowered her quality of life for a time.

“Just being on the steroids I couldn’t be outside, I couldn’t walk,” Dominque says. “If I did have the energy to go out, I could only do it for an hour or two before I was sleeping or too tired to do anything else.” She says, “It put a good pause on my whole life for a while.”

Seeing a dietitian is important to help patients with chronic GVHD of the stomach and intestines improve their quality of life, says Dr. Alousi. “Dietitians can recommend dietary supplements and offer advice to manage symptoms.” And because weight loss and malnutrition is related with lower strength and endurance, Dr. Alousi notes that “patients with these symptoms should also see a physical therapist.”

Dominique says that she’s now feeling better. “I’m not cooped up in my house anymore,” she says. “I’m out doing stuff. I’m doing pretty well emotionally.”

Her message to people who get chronic GVHD of the stomach and intestines is to give the treatment time to work. And most important, she says, if you feel sick, tell your doctor, tell a family member. “Get it looked at because you can never be too cautious.”

For more information on chronic GVHD of the stomach and intestines, view our new fact sheet, developed jointly by Be The Match and the Chronic GVHD Consortium.

A Father’s Urgent Plea

Posted June 14th, 2017 by Be The Match and filed in News
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Kapil, searching patient

Kapil will be spend this Father’s Day with his three children. Nothing out of the ordinary has been planned, but for Kapil, it will be very special.

Earlier this year, Kapil was diagnosed with myelofibrosis, a disease that causes debilitating symptoms such as fatigue, abdominal discomfort, that affect the quality of his daily life. Doctors has given him 2 to 3 years to live. His only hope for a cure is a marrow transplant. Like 70% of patients, Kapil does not have a fully matched donor in his family and has turned to Be The Match® to find an unrelated donor.

“The best part about being a dad is seeing my kids happy. Seeing them blooming on their own, crossing milestones like going from speaking five works to a sentence,” said Kapil. Like all parents, he wants his kids to study hard and be good, contributing members of society. “I hope I am able to be there for that, but the reality is, there’s a chance I am may not be,” he said.

Kapil says he is truly touched by the outpouring support he’s received from the community. Friends, family and strangers have hosted marrow drives and/or joined the registry.

“I want to send a message to all those who are out there. That you have a chance to save somebody’s life. It may be mine, it may be a 3-year-old, a 9-year-old, a 21-year-old, it doesn’t matter. The point is, just be ready that if you are a match to please come forward and take the steps involved to donate stem cells. Cause for you it might be a blood draw, but for me (and others) its life-saving,” Kapil pleads.

This Father’s Day, be the hope Kapil and patients like him are looking for. Join the marrow registry at join.bethematch.org/HOPE4KAPIL.

Honored and humbled for a second chance at life

Posted June 13th, 2017 by Be The Match and filed in Patient Stories
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Khalia was just 3 months old when she was diagnosed with sickle cell disease. After 18 long years of dealing with pain, she finally received her cure: a bone marrow transplant from an unrelated donor on the Be The Match Registry®.

Khalia, transplant recipient (right), with her mom

Kimyacta, Khalia’s mom, remembers how ready she and her daughter were once the donor was identified. “We had many meetings to prepare us for this journey and the journey itself was literally life changing!”

Khalia is now pain free and enrolled in college where she’s pursuing her degree to become a Child Life Specialist. She and her mom continue to let others know how important it is to become a donor. “I hope I’m able to save a life just as someone did for my child,” says Kimyacta.

A bone marrow transplant is the only known cure for sickle cell disease. Join the registry and be someone’s cure!

“Having my wisdom teeth removed hurt worse …”

Posted June 13th, 2017 by Be The Match and filed in Donor Stories
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Samantha, marrow donor

“Honestly, having my wisdom teeth removed hurt worse than donating marrow. I was under anesthesia and not awake during the procedure. I was in the hospital at 5 a.m. and out by 11 a.m. For about a week and a half I was a little sore, like I had fallen down. And time-wise, it was nothing – especially compared to other things I’ve done, like being on the high school swim team with the grueling training before and after school.”

Samantha was fortunate to meet the man she donated to, Ron. “It’s mind-blowing and cool to think that something I did that was so simple let Ron walk his daughter down the aisle, see his son graduate from law school, and witness the birth of his first grandchild.”

When Samantha was 18, she was already a regular blood donor. When she learned about the need for marrow donors, she researched Be The Match online and joined soon after. “It just seemed like the right thing to do.” In October 2012, she got the call that she was a potential match for a 55-year-old man with acute myeloid leukemia. She went in for additional testing, then went on to donate.

Ron, transplant recipient, with Samantha, marrow donor

Samantha’s recipient, Ron

In 2012, Ron learned that his leukemia, which had been in remission for two years, was back. His doctors told him that a marrow transplant was his best and only hope for a cure.

With no siblings, Ron turned to Be The Match to find a donor match. Within the month, Ron’s doctors had narrowed the options down to two different donors – one of them a 21-year old from Texas—Samantha.

Ron and Samantha met in-person in 2014 at the Chicago Be The Match Walk+Run. Share in the moment which aired on Good Morning America.

June 19 is World Sickle Cell Awareness Day

Posted June 13th, 2017 by Be The Match and filed in News
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Constance, marrow transplant recipient

Did you know: in the United States, sickle cell disease (SCD) affects about 70,000-100,000 people. It is most common among African Americans and Hispanics, but is also found in other ethnic groups. The only known cure for SCD is a blood or marrow transplant, which replaces the patient’s diseased blood-forming cells with healthy ones from a matched donor.

SCD is an inherited disease, named for the crescent- or sickle-shaped red blood cells it causes. These defective cells can get stuck in small blood vessels, blocking them. This keeps red blood cells and the oxygen they carry from getting to all parts of the body. Complications of SCD can range from mild tiredness (fatigue) to more severe symptoms such as strokes, heart attacks, infections, organ damage and repeated episodes of severe pain.

A blood or marrow transplant is the only known cure for SCD. And because SCD disproportionately affects African American and Hispanic patients, there is urgent need to add more individuals of African American and Hispanic heritage to Be The Match Registry.

A legislative team from Be The Match will be in Washington D.C., for World Sickle Cell Awareness Day, advocating for increased awareness of SCD and the struggles patients and their families face, as well as secure additional funding to help more patients live longer, healthier lives.

Meet Kami, a courageous young girl living with sickle cell. Help her find a donor by watching and sharing her story

Choosing transplant to cure her sickle cell disease

Posted June 12th, 2017 by Be The Match and filed in Patient Stories
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On August 1, 2012, Aya got her second chance at life while a patient at Hackensack University Medical Center – she received a bone marrow transplant that cured her of sickle cell disease (SCD).

Aya, transplant recipient

For Aya, her transplant was a welcome relief from a lifetime of dealing with her illness.

“I was born with sickle cell anemia,” she said. “One of the main stresses of the sickle cell disease is pain crisis. I began experiencing this painful ordeal from the age of three.”

After her first pain crisis, managing her symptoms became a familiar part of Aya’s routine.

“The ordeal would start with pain that would escalate,” she said. “When it got to its worst, my mom would have to take me to the hospital.”

Once in the hospital, Aya said her medical team did everything they could to help her manage sickle cell disease.

“Once they admitted me, the process would begin,” she said. “Generally, they would always hydrate me and give pain medication. I would always require oxygen – because of the pain, I could not take deep breaths.”

While Aya’s childhood revolved around managing her sickle cell, as she grew, her family knew she would need a bone marrow transplant.

“The older I got, my stays in the hospital increased and my pain levels would escalate,” she said. “I underwent a bone marrow transplant from an anonymous donor. The procedure was a success and I am now sickle cell free!”

A bone marrow transplant is the only known cure for SCD. Join the registry and be someone’s cure!

Being a voice for patients with sickle cell disease

Posted June 12th, 2017 by Be The Match and filed in Patient Stories
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Ines received a bone marrow transplant for sickle cell anemia in 2009 during her senior year of high school.

Ines, transplant recipient

Since her transplant, Ines has been focused on becoming a voice for other patients.

She studied molecular biology and English at the University of Pittsburgh.

Ines has also worked with the Children’s Hospital of Pittsburgh Sickle Cell Team as a research assistant. She has dedicated her life to sickle cell research and awareness – including sharing her story at legislative briefings where she offered her perspective on the treatment of sickle cell disease.

As her future continues to expand post-transplant, Ines said she is forever grateful that her match was found.

“My marrow transplant has made it possible for me to plan for the future instead of having to plan around my illness,” she said.

A bone marrow transplant is the only known cure for SCD. Join the registry and be someone’s cure!

Pulling together to overcome sickle cell disease

Posted June 12th, 2017 by Be The Match and filed in Patient Stories
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In January 2016, Desiree became the first adult at the Kansas City Cancer Center to be treated with a bone marrow transplant as a cure for sickle cell disease.

Desiree, transplant recipient

While Desiree was anxious, the timing of her transplant was critical – if her treatment was delayed, she was facing severe and irreversible lung damage that would have made her transplant even riskier.

Despite her nerves, Desiree said her support system got her through the time in the hospital.

“I don’t like being away from home, so it was hard spending all that time away,” she said. “Thankfully, my mother, sister and grandparents were with me the whole time. They put my needs before their own and made sure I had things from home to comfort me.”

Although her family was with her throughout her transplant journey, Desiree’s recovery was difficult due to a complication from sickle cell.

An earlier sickle cell pain crisis had left her with avascular necrosis in her right hip and barely able to walk. This condition occurs when bone tissue dies from lack of blood supply. Her doctors had her get out of bed and walk each day to regain her strength.

Now that she is healthy, Desiree said she is focused on helping raise awareness for sickle cell disease.

“We could cure others of the disease and find more perfect matches if more minorities were bone marrow donors,” she said. “Now I can go more places and do more things without having to worry about pain or being admitted to the hospital. I’ve missed out on doing and enjoying a lot but, my health is a lot better and continues to improve. I’m very optimistic about my future.”

A bone marrow transplant is the only known cure for SCD. Join the registry and be someone’s cure!

Justin’s journey with sickle cell and transplant

Posted June 12th, 2017 by Be The Match and filed in Patient Stories
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Justin had his first sickle cell crisis when he was six months old – for his mother, Kari, this was a day she will never forget.

Justin, transplant recipient

“He wouldn’t stop crying and nothing I did could help him,” she said. “This was the beginning of a lot of heartache, pain and tears, not just from him, but from me too.”

After tests showed Justin’s younger brother was not a match, Kari said the family was at a crossroads.

“My husband and I considered having another baby in hopes that this baby would save Justin’s life,” she said. “I prayed and there was a perfect match.”

Justin had his life-saving transplant in July 2014 – with Kari by his side for every step of the journey.

“I stayed with him every day,” she said. “When he hurt, I hurt. When he could not eat, I could not eat.”

While Justin has had some post-transplant complications including migraines and kidney issues, Kari said he is a healthy and thriving teenager.

“Life is great,” she said. “Justin gets to go to school and socialize. For so long, everything was about Justin and he was the only thing that mattered in our family. Now, life does not revolve around Justin and his sickle cell.”

A bone marrow transplant is the only known cure for SCD. Join the registry and be someone’s cure!