Caregivers from our virtual transplant caregiver support group provided insight on what they’ve learned from their experiences, as well as suggestions for other caregivers who are new to the process.

Here’s what they said:

Learn pre- and post-transplant expectations and responsibilities. Create lists, schedules, and agendas with the transplant patient. Review these lists with your medical team to develop a sense of confidence in your role and responsibilities as a caregiver.

Ask lots of questions and take notes. Keep a journal and bring it to all appointments, labs, and meetings. Write down the answers to your questions so you can refer to them later.

Be an advocate. You will quickly become an advocate for both yourself and the patient. Keep your patient’s healthcare goals in mind while navigating interactions with the transplant team.

Keep a bag packed. Assemble an overnight bag for both you and the patient in the event of an unexpected hospitalization. This bag can include extra clothing, as well as a list of things you won’t want to forget, such as electronics and medication.

Transplant is multidimensional. It impacts not only the physical health of the transplant patient and caregiver, but also the emotional and spiritual health of you both. Prioritize self-care whenever possible.

This process is a rollercoaster. It has many highs accompanied by lows. You will likely experience feelings of hope, fear, excitement, and everything in between. Find ways to connect to other transplant caregivers to share these feelings.

It will require a lot of flexibility and communication. There are times that the transplant process may not go as you expected. Keeping an open mind and remaining adaptable will help to cope with these changes.

Find things, places, or people that keep you grounded and give you perspective. As a caregiver, it can be is difficult to remember life beyond treatment and transplant. Try to find distractions and enjoyment outside of this experience.

Find something every day that makes you laugh. Participating in activities or spending time with people who bring you joy can support your mood, health, and decrease the chance of burnout.

Remember that transplant is a marathon, not a sprint. This is a journey that doesn’t end with surgery. It is a commitment that involves ongoing support, obstacles, and care. Supporting your own needs is a critical part of avoiding burnout and navigating your ‘new normal.’

If you’re interested in connecting with other transplant caregivers to hear their stories, share your own, and experience a sense of community, join the monthly support group here: GiftofLifeHowiesHouse.org/upcoming-support-groups/