The circumstances of living liver donation are quite different from kidney donation in that, in most cases, the potential recipient is your child.
A parent must often weigh the risk of enduring the wait for a deceased donation versus the personal risk of living donation. Scientific evidence to date has not shown a clear advantage to living donation with little effect on the donor. Living liver donation can also put additional care-giver burdens on the family since both a child and parent are often recovering from surgery. As a consequence, some transplant centers favor deceased donation over living donation. You’ll want to ask your transplant team for their point of view.
In the event you are considering donation—whether for a child or adult—here are some questions you’ll want to answer for yourself:
- How do I feel about organ donation in general?
- Does my religion have a position on organ donation?
- How long a wait might there be for a deceased donation? (Durations vary by state in the US.)
- What impact (if any) will donation likely have on my relationship with the recipient? My family members? Friends?
- Who else might be considered as a donor? How might we mutually agree on who should be considered first?
- Do I have the financial resources available to cover time off from work for testing, surgery, and recovery?
- Am I prepared to deal with the possible outcomes of the donation such as rejection of the organ, pain, and even death?
- Am I comfortable with my motives for donation? Do I expect some sort of compensation or pay back for donating?
- Do I feel sufficiently educated to make an informed decision?
- Am I up to it physically? Are there current aspects of my health that I know should keep me from donating?
- Do I have a “support network”—family and friends—to help me through this process, or am I going it alone?
- How will I feel if I am rejected as a consequence of the screening process?
You also need to be prepared for the possibility that you will not qualify as a donor, which can be emotionally taxing to a parent if the intended recipient is your child. Various liver transplant centers report 50%-70% of potential donors are not accepted.
The decision whether or not to donate ultimately rests with you alone. However, there are resources available to you to help you through the process. It is now becoming standard practice for a transplantation team to include a social worker or counselor. This person may interview you, asking questions, similar to those above, in an effort to assess your emotional and financial preparedness for living donation. This interview can be a time to explore your feelings with an independent third party.
You might also consider reaching out to family members, close friends, a religious or spiritual guide, or someone who has gone through this process. The LDO Message Forum is another source for support and information.
There are reasons not to donate. The financial strain my be too great. You might feel you’re being pressured into it. Your own motives may be misguided. If you decide against donation, consider working with the transplant coordinator for a graceful way of backing out. There’s no reason to be ashamed, especially if you’ve had the opportunity to educate yourself and think through the issues.
If you have problems with the transplant program, UNOS provides a patient service line (888-894-6361) for patients to report concerns about their transplant program or their general experience with transplantation. The patient services staff can be reached by phone from 8:30am to 5:00pm Eastern, Monday through Friday. Voice mail is available outside of business hours.