Even though you may have less frequent healthcare visits than you did right after transplant, it’s important to stay connected to your transplant team. Be sure to report any new or changing signs and symptoms of GVHD as well as any that aren’t responding well to your current treatment plan.
Your care team relies on you and your caregiver to let them know how you’re doing along the way, so they can make recommendations and adjustments accordingly. Keep talking to them and asking questions! If you continue to deal with problematic symptoms of GVHD, ask your team what other options are available.
Recovery after stem cell transplant can be a long road, especially if you’re managing complications like GHVD. Don’t go it alone. Various advocacy organizations offer peer connect programs that can match you with other transplant survivors to talk or email with. Or explore Facebook and other groups that let you converse online with other survivors who “get it.”
Many patients find that sharing their experiences and personal insights about their transplant journey and GVHD is helpful for both themselves and others. Nothing inspires like hearing from people who’ve “been there.”
If you’d be willing to share your transplant story and helpful advice about living with GVHD, sign up for our GVHDspeaks program.
— Diane Randolph, Oncology Clinical Nurse Educator, Incyte Corporation
Like patients, caregivers can also experience a long and sometimes difficult period of recovery after stem cell transplant. Find ways to connect with other caregivers who’ve walked in your shoes, or reach out to support groups that may help make your own journey forward easier.
It can be extremely rewarding to help others stepping into the caregiver role by sharing your experience and know-how. Many advocacy organizations invite transplant patients and caregivers to serve as peer mentors, usually by matching you with someone and arranging occasional phone calls.
Our GVHDspeaks program gives you an opportunity to: