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The Tap on the Shoulder
Perhaps you have a relative or friend who is suffering from end-stage renal disease. You may find yourself approached about donation. Maybe that's already occurred. How do you prepare yourself for this moment?
Living donation involves significant invasive medical procedures. Please make sure you are ready to donate. Being ready means:
Living donation should occur only when there is "informed consent, freely given." That is, you should agree to be a living donor only after you have been fully educated on the subject, and when your agreement to donate is without pressure from other people.
If you find yourself in the position of being asked to donate, you might consider these issues:
The decision whether or not to donate ultimately rests with you alone. You are free to change your mind at any time. You should never feel pressure from the recipient, family, friends, medical professionals, or anyone else to donate. Fortunately, there are resources available to help you through the decision-making process. Research into the experiences of living donors shows that potential donors can be better prepared if they have access to support groups, educational seminars, others who have donated, and sessions with a transplant social worker.
It is 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 should feel comfortable asking the transplant team to identify an independent third party to act as your advocate--someone who is not a part of the transplant team who can give you support and guidance.
You might consider reaching out to family members, close friends, a religious or spiritual guide, your personal physician, or someone who has gone through this process. This can be a time of high anxiety. Potential donors report concerns about the recipient if they don't donate, anxiety about the testing and surgery, and guilt if there is not a match or if the transplant fails. Therefore, it's important to reach out to people you trust who can help you with the anxiety.
There are also resources right here on LDO. You can request a "Living Donor Buddy™", who is someone who has already been a living donor and has volunteered to help potential donors. The LDO Message Forum is another source for support and information.
Finances are a major issue for most potential donors. Generally, medical expenses related to the transplant, such as the cost of testing and surgery, are covered by the recipient's medical plan. Important: confirm with the transplant coordinator and the recipient's medical plan that you will not be charged for medical expenses. Get that confirmation in writing, if possible. Do not give your medical insurance information to the transplant team, hospital, or recipient's insurance plan. You should not have to pay for any medical expenses related to the transplant testing and surgery, so they don't need your insurance information.
While medical expenses usually are covered, travel, living expenses, child care, and lost wages from taking time off for testing, surgery, and recovery are not covered. Ideally, you have personal savings plus benefits from an employer, such as paid vacation or sick leave, to cover living expenses. In the US, it is illegal to be paid for donating an organ. However, an exception is allowed for "reasonable payments" to the donor for "travel, housing, and lost wages incurred by the donor of a human organ in connection with the donation of the organ." Therefore, it is possible for a recipient to pay the donor within these legal constraints. Such payments are rare. Also, some states provide for a tax credit to lessen the financial burden of living donation. A list of states can be found here. There is also a US government-funded program, the National Living Donor Assistance Center, that will cover nonmedical expenses related to donation for eligible donors. The American Transplant Foundation has a living donor assistance program. For Georgia residents, the Georgia Transplant Foundation has a financial assistance program for living donors. And the American Living Organ Donor Network has a living donor fund.
You should be sure you have medical, life, and disability insurance to protect you and your family in the event of complications following donation. If you need assistance with insurance, the American Foundation for Donation & Transplantation offers coverage. You can learn more about this special insurance for living donors here. You need insurance protection now in case you have complications later that affect your insurability.
You should also review your last will and testament, living
will, and durable power of attorney for health care. The last will and
testament describes how you would like your assets distributed in the
event of your death. A living will describes the kind of health care
(or rejection of care) you would like in the event you become
incapacitated. Finally, the durable power of attorney for health care
appoints someone you trust to make decisions about your health care if
you are incapacitated and can't decide for yourself. Make sure
you have these documents and that they are up to date. If you don't
have them, contact an attorney for help.
Generally, living donors feel honored to be considered, and the vast majority (96%) who have donated would do so again. Donors report a higher quality of life, perhaps linked to a greater sense of self-worth and self-image as a consequence of donation. Interactions with the organ recipient and his or her family become closer or remain the same in most cases, regardless of the relationship to the recipient. Donors also report they feel good when they see an improvement in the recipient's health as a result of the donation.
However, 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, particularly if you expect compensation. If you decide against donation, consider working with the transplant coordinator for a graceful way of backing out. They will find a confidential medical reason for you to be disqualified. 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."
To summarize, the goal at this stage is to get prepared. Here's a suggested "to do" list to get started:
© International Association of Living Organ Donors, Inc.