Caregiver Toolkit > Living Donor
Living Donor
This section offers a comprehensive overview of living donation. It covers essential topics for caregivers including responsibilities before, during, and after living donation.
The section encourages caregivers to ask questions and provides guidance on what to consider when interacting with the transplant center. Lastly, it offers resources related to living donation.
All Living Donors
Living adults can donate:
- part of their liver
- 1 of their 2 kidneys (most common)
Transplant patients can receive organs from living donors who are:
- family,
- friends,
- other people they know, or
- people they do not know (anonymous donors).
Being a living donor has risks.
- Usually, living liver donation has more risks than living kidney donation.
- Donors are screened for medical or psychosocial problems that could affect them after donation.
- Only very healthy adults can be living donors.
Living Kidney Donation
We are born with 2 kidneys, but most people only need 1 kidney to live. People with end stage renal disease need a new, transplanted kidney.
Living kidney donors get general anesthesia before surgery to remove their kidney. After surgery, they:
- have a brief stay in the hospital.
- will probably feel fatigued.
- can usually return to normal activities in 4-6 weeks.
- might have lifting restrictions for 6 weeks.
- might have driving restrictions while they take pain medicine.
Risks of living kidney donation surgery are:
- allergic reaction to anesthesia,
- pain,
- infection,
- blood loss which may require a blood transfusion,
- blood clots,
- pneumonia,
- injury to other organs, and
- death from post-surgery complications.
Living Liver Donation
The liver is amazing because it regrows. A living donor can donate part of their liver and it re-grows to normal size in a few months!
People with liver failure need a new, transplanted liver. During transplant surgery, their whole diseased liver is replaced with part of a healthy liver. (The donated part grows to normal size in a few months!)
After surgery, living liver donors:
- stay several days in the hospital.
- can usually return to normal activities within 2 months.
- have a normal-sized liver within a few months.
Risks of living liver donation surgery are:
- allergic reaction to anesthesia,
- pain and discomfort,
- nausea,
- wound infection,
- bleeding that may require a blood transfusion,
- blood clots,
- pneumonia,
- bile leakage,
- bile duct problems,
- hernia,
- scar tissue formation,
- liver failure, and
- death from post-donation complications.
Before donation, you must commit to caregiver responsibilities.
Many donors feel anxious during the donor evaluation and after surgery is scheduled. As a caregiver, you must:
- pay careful attention to the donor’s emotional health.
- give appropriate support and reassurance.
- encourage them to talk to the transplant team if they have doubts about donation. (They can decide not to donate any time before surgery.)
Ask the transplant center how long you and the patient must stay close to the center after surgery. Help the donor plan, especially if they don’t live close to the center.
- Do you and the donor need to fly or rent a car?
- Will you and the donor need a hotel or other lodging (near the center)?
During donation hospital stay, stay close and be available to help.
- Ask the transplant center how close to the hospital you must be.
- Participate in discharge education with the Living Donor Coordinator and Unit Nurse.
- Take notes during discharge teaching sessions.
- Pick up medications for the donor before they are discharged from the hospital.
- Tell the transplant team which pharmacy they should use for prescriptions.
- Confirm travel and lodging plans before the donor is discharged.
- Tell the transplant team where you and the donor will be staying and how you will travel to follow-up clinic appointments.
After donation, when the donor is recovering at home, you will:
- help with simple wound management.
- manage their medications (pain medication and stool softener to prevent constipation).
- take them to follow-up clinic visits. (If they go to their primary care physician (PCP) instead of the transplant center, the transplant team will communicate with the PCP.)
- 1-2 weeks after hospital discharge
- 6 months after discharge
- 1-year follow-up
- 2-year follow-up
- take over household chores and meal preparation. Remember to ask (or hire) other people to help you.
- pay close attention to the donor’s health.
- call the transplant team if the donor is sick.
- provide emotional support.
- accommodate for Covid-19 pandemic procedures (limited visiting hours, etc.). Ask the transplant center for more specific information.
Potential living donors may decide not to donate because of money challenges. Programs can help living donors with out-of-pocket expenses, but many employers do not have policies that help donors with time off or lost wages.
The National Living Donor Assistance Center (NLDAC) can help eligible organ donors and their caregivers with financial help for:
- travel,
- lodging,
- meals,
- expenses during evaluation appointments, hospitalization, and follow-up clinic visits (usually within 2 years, sometimes more),
- lost wages, and
- dependent care expenses.
Eligibility is based on household income. Learn more about NLDAC.
Visit the AST Living Donor Circle of Excellence to find a list of companies that give financial help to living organ donation. If your employer is not on the list, share information about the Circle of Excellence with them.
For more information about financial aspects of living donation, visit the American Society of Transplantation’s Living Donor Financial Toolkit.
- What should I do if the living donor feels pressured to donate?
- How long should I plan to take care of the living donor?
- Does the living donor need 24/7 care?
- What should I do to take care of the living donor after donation?
- What medications will the living donor take?
- How will I know when the living donor doesn’t need my help anymore?
- United Network for Organ Sharing: https://unos.org/transplant/living-donation/
- American Liver Foundation: https://liverfoundation.org/for-patients/resources/brochures/
- UNOS Transplant Living: https://transplantliving.org/living-donation/
- National Living Donor Assistance Center: https://www.livingdonorassistance.org/How-to-Apply/Eligibility-Guidelines)
- American Society of Transplantation Living Donor Toolkit: https://www.livingdonortoolkit.com/
- Included within the Living Donor Toolkit:
- Living Donor Financial Toolkit
- Living Kidney Donor Medical Toolkit
- Living Liver Donor Medical Toolkit
- Included within the Living Donor Toolkit:
- American Society of Transplantation Living Donor Circle of Excellence: https://www.livingdonorcircle.com/
- American Society of Transplantation Living Donor Toolkit, https://www.livingdonortoolkit.com/, 2020.
- Includes Donor Financial Toolkit, Kidney Donor Toolkit, and Liver Donor Toolkit.
- American Society of Transplantation, https://www.myast.org/living-donor-circle-excellence. 2020.
- American Transplant Foundation, https://www.americantransplantfoundation.org/about-transplant/living-donation/about-living-donation/living-liver-donation/. 2020.
- Informate, Informate.org, 2021.
- National Living Donor Assistance Center, https://www.livingdonorassistance.org/Resources/FAQs. 2020.
- National Kidney Foundation, https://www.kidney.org/transplantation, 2021.
- National Institute of Diabetes and Digestive and Kidney Diseases, https://www.niddk.nih.gov/health-information/kidney-disease/solitary-kidney, 2021.