When a patient needs an organ transplant, they are added to the United Network for Organ Sharing (UNOS) waitlist. The wait time can be different for each person, depending on factors like organ availability. For example, a kidney transplant may happen quickly if a family member or friend is willing to donate a kidney. However, if no living donor is available, the patient must wait for a kidney from someone who has passed away. Organs like the heart or lungs can only come from deceased donors, which may result in a longer wait. For more information on UNOS and waiting for a transplant visit UNOS.

During this waiting period, both patients and caregivers may feel anxious, frustrated, and out of control. Caregivers often feel helpless and worried about finances, work, and their loved one’s future. A helpful tip is to stay in contact with the transplant team to get answers to questions and feel more involved in the process.

Support groups are helpful for caregivers, as they allow people to talk with others going through similar experiences. Many caregivers also feel grief or “survivor’s guilt” because they know another family is grieving while they hope for a transplant. These feelings are normal, and it’s important to talk to someone about them. More information about our virtual patient or caregiver support groups can be found HERE.

Caregivers may also face financial stress due to medical costs and lost income. There are programs that can help, such as financial assistance from hospitals or prescription companies. It’s important to talk to a social worker for help and to plan for future decisions about healthcare and finances, especially if the patient becomes too ill to make decisions. Read more about FINANCIAL RESOURCES.

In short, waiting for an organ transplant can be difficult, but staying connected with support groups and preparing for the future can help caregivers and patients feel more in control.