Meet Lorayne, Peer Connect volunteer

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Lorayne, transplant recipient and Peer Connect volunteer with her grandchildren

Lorayne was diagnosed with acute myeloid leukemia (AML) in October 2011, and 5 months later received a transplant from a donor in Germany.

She remembers how bewildering it was to get her diagnosis and how hard it was for her to process all the complexities of getting a transplant.

So she was grateful that her transplant team didn’t just focus on her medical and physical needs, but also helped her connect with someone who had been through the transplant process. That person was Wendy, a Peer Connect volunteer, who helped Lorayne address her fears and anxieties about transplant.

And now Lorayne wants to give back and help others going through the transplant process. She has been a Peer Connect volunteer for about 4 years now.

“Everyone’s journey is difficult,” she says. “I feel like they want to know that they can do this.”


Forming special bonds

Be The Match started its free Peer Connect program because transplant patients and caregivers reported that they benefited a great deal from talking with someone who’s “been there” and “gets it.”

“A lot of people just need to talk,” Lorayne says. “I understand what they’re going through. I had all those fears and worries, too.”

Lorayne, now a grandmother of 7 and 5-year-old grandsons and a 2-year-old granddaughter, was a kindergarten teacher. Because of her profession, she says that she knows how to be an active listener, which she says is critical to transplant patients and caregivers. “As a teacher, I think I have the temperament,” she says. “I’m encouraging and empathetic.”

Some people have frustrations with their family or their medical center, she says. One way Lorayne helps people is by giving them a chance to verbalize those frustrations, which allows them to unburden themselves.

“My experience as a volunteer is that people are so ready to talk ─ and need to talk,” Lorayne says. “They want information, they want their fears and anxieties addressed, and they want reassurance.”

Part of that reassurance for patients and caregivers is simply talking to someone who has successfully gone through the transplant process, says Lorayne. “I think back to my experience talking with Wendy. She got through it and she was alive. People want to know there is life after transplant.”


What to expect from the Peer Connect program

The Peer Connect program matches volunteers with patients or caregivers based on the request. Some people want to talk to someone who is close to their age. Other people may want to connect with someone who has the same disease or other life circumstance.

In one instance, Lorayne connected with someone who had the same type of graft-versus-host disease (GVHD) that Lorayne did. Talking with another person who also had to deal with GVHD of the liver helped that patient a lot, Lorayne says, but the connection was also a learning experience for Lorayne and their connection gave comfort to both of them.

Lorayne’s approach when assigned a Peer Connect patient is to email the person first, to arrange a convenient time to talk on the phone. The first call can be as long as needed, Lorayne says, and begins with Lorayne asking about their experiences and their current situation.

“As they’re able to talk, I’m able to share my experience with them,” Lorayne says. “They can expect a listening ear, a comforting volunteer, who will be there for them even beyond a phone call.”

Typically, Lorayne and her connections will talk again or connect by email a few more times. “As volunteers, we’re always there for follow up,” Lorayne says.

Request a connection

If you’re struggling with your transplant recovery, you are not alone. No matter where you are in the transplant process and recovery, and whether you’re a transplant recipient or caregiver, our Peer Connect program can connect you with a trained volunteer who’s been there.

Visit to request to talk with a Peer Connect volunteer.


Emotional highs and lows after transplant

Posted September 12th, 2016 by Be The Match and filed in News, Patient Stories
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Whether you or your loved one had a transplant, you’ve been through a lot. Even if you were very upbeat throughout treatment, it’s normal to sometimes feel down, worried or anxious after transplant.

But when feelings of anxiety, worry or feeling down won’t go away or get in the way of activities of everyday life, it’s time to ask for help. Read on to learn about symptoms of depression and anxiety, and how to ask for help.


Danielle, transplant recipient

 “For the first 3 months after transplant, I was severely depressed. I was in a ‘why me’ state for a while. I didn’t want to get out of bed. My doctor prescribed antidepressants. That, along with the support of my mom, really helped.”                

– Danielle, transplant recipient

 Recognizing anxiety and depression

Symptoms of anxiety include feeling worried, fear or dread. Some of the symptoms of depression include:

  • Sleeping more or less than usual or not being able to sleep
  • Not being interested or finding pleasure in activities you used to enjoy, including sex
  • Having trouble concentrating, remembering or making decisions
  • Feeling guilty, hopeless, helpless or worthless
  • Thoughts of hurting or killing yourself. Call the National Suicide Prevention Lifeline at (800) 273-TALK (8255) any time to talk with someone who can help.

If you’ve had any of these symptoms most days for 2 or more weeks, it can be a sign that you need to ask for help. Tell your doctor about your symptoms and ask what could help you. Your doctor might suggest a prescription medicine, talking to a therapist or both.

Sometimes it can be hard to talk about these symptoms. If you’re talking to your doctor, it might help to say, “I haven’t been feeling like myself lately. I’m concerned that I’m depressed or overly anxious.” Or, if you’re concerned about a loved one, you might say, “You don’t seem like yourself. How are you feeling?”

Everett Lee

Jeanette, caregiver (middle) with her daughters

“I wasn’t really interested in any of the things I used to do. I was so busy trying to make it through each day that I never noticed that I had changed. My doctor explained that I was depressed and overwhelmed – and he prescribed anti-depression medicine. That helped. Both my daughters were happy to hear me laugh again.”

– Jeanette, transplant caregiver

 Recognizing PTSD

Sometimes, anxiety is so intense after going through a very difficult experience that post-traumatic stress disorder, or PTSD, develops. If untreated, PTSD may affect your relationships and your ability to function at home, school or work.

Some of the symptoms of PTSD include:

  • Nightmares
  • Reliving your experience over and over
  • Feeling emotionally numb, guilty, depressed or worried
  • Feeling easily startled, tense or “on edge”

These symptoms may come early in your recovery or later on. If any of these symptoms last more than a few weeks, they might be PTSD. Tell your doctor about your symptoms. Many people with PTSD get better with medicines, counseling and/or group therapy.

Finding meaning

The search for meaning in life is part of being human. During a health crisis, it’s normal to move through an ongoing emotional process of suffering, coping and making meaning. Reflect on your transplant journey, or your loved one’s transplant journey, and how it has affected you. This can help you make sense of your situation and find meaning. Ask yourself:

  • What new insights have I gained from the experience?
  • What is now clear in my life that wasn’t before? What is less clear?
  • How have my priorities changed?

It may help to write your thoughts and feelings in a journal, or talk about your feelings with a counselor, social worker, psychologist or faith leader. Some people find it helpful to talk with others, perhaps in a support group, who have gone through similar experiences.

If you need to talk, Be The Match patient services coordinators are available to listen, answer questions and provide support. Call 1 (888) 999-6743 or email

If you want to connect with someone who’s “been there”, the Be The Match Peer Connect program will put you in touch with one of many trained volunteers who’ve been through transplant. To request a connection, visit or call 1 (888) 999-6743.

What if my disease returns? How to manage this common concern through your unique coping style

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Do you worry about your disease returning? If so, you’re not alone. “Fear of recurrence is one of the most common concerns after transplant,” says Jill Randall, MSW, LICSW, Be The Match Patient Services Coordinator.  In this article, we’ll explore the common triggers, suggestions for how to cope, and the story of one patient who overcame his fears and is now helping others.

Fear of relapse is common—both before and after transplant

Ted blog image with captionTed was diagnosed with acute lymphocytic leukemia, Philadelphia chromosome positive, in May 2005. “When I was awaiting my transplant, and getting a marrow biopsy every 28 days to see if I had relapsed, my fear of relapse grew with each passing month, peaking in the month prior to transplant,” recalls Ted. “But even after I got my transplant, I knew I wasn’t out of the woods. I had to find a way to ease my fears so I could focus on getting better.”

To better understand your fear, look first at what triggers it. “It’s common for specific events like biopsies to set off fears,” says Jill.

Common triggers for fear of recurrence include:

  • Biopsies, scans, and other tests
  • Feeling new aches or pains
  • BMT clinic visits
  • Anniversary of a diagnosis
  • Hearing about someone else’s cancer diagnosis or relapse
  • Stories about cancer in the media
  • Sights, sounds, and smells with negative associations

Find a coping strategy that works for you

A coping strategy can help you manage your fear.  Some examples include relaxation exercises, deep breathing, listening to soothing music, or bringing a friend to distract you while waiting for an appointment. Jill says keeping your body and mind healthy (by exercising regularly and eating nutritious foods) or finding a group of peers to talk with can also help you relax and cope with fears.

Ted uses a variety of ways to cope with his fears. “Personally, I found prayer especially helpful,but I know that’s not for everyone,” said Ted. Just talking can help a lot. While I was in the hospital, I had access to a chaplain and a psychologist, and my wife Cindy and I talked openly about everything, including our fears.” And when Ted’s doctors would ask how he was doing, he would talk about both his physical health and his emotional state.  “If you need help coping, I would encourage you to bring it up rather than wait to be asked.”

“Your care team can suggest resources and programs, including counselors, peer support groups, online tools, and relaxation techniques,” says Jill. “Medications might also be prescribed to help you feel less afraid and tense.”

Ted also created a CaringBridge website, which he describes as an absolute lifeline. “It’s hard to stay fearful when friends and family fill you with hope every day. And it can be especially reassuring to connect with other transplant patients who understand what you’re going through.”

How to recognize the signs when fear gets in the way of healing

Recovery after transplant is an emotional as well as physical process. “Fear and worry can interfere with healing” says Jill. “Talk to your care team if you notice changes in your sleep or appetite, if you’re having trouble concentrating, or if thoughts and fears are interfering with daily life.”

Learn more about understanding and managing emotions after transplant.

On bad days, Ted has another way of coping: “I’d remind myself that as long as my doctor wasn’t telling me to get my affairs in order, I was still here, I was still in the game, he says   “Then I’d tell myself that I was done with leukemia, and pour my energy into healing.”

Celebrating progress, looking forward

After transplant, Ted’s fear of recurrence changed. “The first biopsy was especially nerve-wracking, but after that, I got the most reassurance from the data, from the statistics. I realized my chances of relapsing were decreasing rather than increasing. When my doctor told me I was doing well, I believed him. I’d look back on my pre-transplant worries and focus on how far I’d come.”

Many patients who feel uncertain about their future have a hard time setting long-range goals. “I encourage them to start setting short-term goals for themselves and work their way up to more long-range goals,” said Jill. “Looking forward, anticipating an enjoyable activity, milestone or events are great ways to stay focused on the future.”

Patients support each other

Now that he’s nine years post- transplant, Ted shares his experiences and insights with other transplant patients through a peer- support program. “Being part of the Be The Match Peer Connect Program has been equally beneficial for me as for the people I talk to. It can be easy sometimes to lose sight of how far you’ve come in your recovery. But focusing on the advances is a great motivator to keep going, to make the most of each day and all the days ahead.” The Peer Connect Program can be beneficial to anyone interested in either offering support or receiving support from others.

Share your coping strategies

What has worked for you? What would you recommend to other transplant patients and their families? Share your tips, advice, and favorite resources.