Support for coping with nerve damage after transplant

Posted May 9th, 2017 by Be The Match and filed in News, Patient Stories
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May 7 – 13 is peripheral neuropathy awareness week. It’s not a common problem after transplant, but if you have it, you know it can affect your entire life – and not just physically.

Know the symptoms of peripheral neuropathy

Peripheral neuropathy is numbness and tingling in your fingers and toes. It can also cause pain, weakness, difficulty with writing, and problems with walking and balance. Even a light touch on the skin can be painful.

Everett, transplant recipient, with his doctor

Sometimes it can make your hands or feet more or less sensitive to temperature changes and pain. This may make it painful to step into the bath or shower. Or you may also be less aware of cuts or injuries to your feet. Find tips to stay safe and protect your hands and feet.

If you have any of these symptoms, talk to your transplant team. There are medicines to treat neuropathy and ease your symptoms.

Speak up!

“Advocate for yourself, and don’t minimize or play down your experience of pain or discomfort,” says Olivia Eusden, BMT Social Worker at Be The Match®. Olivia provides one-on-one counseling support over the phone to help patients and caregivers cope with transplant and recovery. She says “It’s important to listen to your body and track its changes.” If you struggle finding the right words to tell your doctor how you’re feeling, Olivia says, “Social workers at your clinic, or trusted family members and friends, can help you advocate for yourself.”

Get support

It’s also important to care for the emotional effects of peripheral neuropathy, says Olivia. She points out that when a chronic problem like peripheral neuropathy develops after transplant, it may be difficult for your loved ones to understand. “When people can’t understand something, they may be fearful and avoid talking about it. As a result, you may feel isolated and under-supported,” she says. If that happens, it’s important to take steps to break out of the isolation.

One way to get social support, says Olivia, is to help people help you. “Tell others how they can support you. Many people need direction when it comes to how to offer support. And, the support you need now may be different from support that others have given to you before or shortly after transplant.”

Olivia also suggests that you be gentle with yourself. “It takes time to adapt to peripheral neuropathy and figure out how to fit it into your life,” she says. “Take comfort in knowing that as with most new challenges in life, they start to make sense over time.” You can make sense of your life after transplant, including peripheral neuropathy, by reflecting on your transplant story. Olivia suggests, “Think about your experience with peripheral neuropathy and incorporate it into your new story. How we retell our stories shapes our personality, our future experiences, and old and new relationships.” Your story can empower you to move forward in your life after transplant.

Finally, Olivia suggests to “Practice self-care and spend time with positive people.” She notes that support from mental health professionals may also help you cope. “You can recover the support you need by seeing a licensed mental health professional,” she says. To receive free counseling support to help you cope with peripheral neuropathy or other challenges after transplant, call 1 (888) 999-6743 or email patientinfo@nmdp.org.

Connect with a peer

“Peer support is some of the best support for people coping with uncommon problems after transplant, like peripheral neuropathy,” says Olivia. Peer support can be in the form of a support group or one-on-one connections.

Support groups are safe spaces to share your fears and frustrations without feeling judged or misunderstood. People in a support group may understand life with peripheral neuropathy in ways that other people might not. There are groups that meet in person, online or by phone. Ask the social worker at your clinic for help finding a support group for you.

One-on-one support is another option. Our Peer Connect program can connect you with a trained volunteer who’s been there. Other recipients and caregivers, with experiences like yours, are available to talk by phone or email, sharing their experience and tips.

To request a connection, visit: BeTheMatch.org/patient-peerconnect