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:
- I am intellectually ready: I have studied living organ donation, and I understand the process including the risks involved.
- I am emotionally ready: I have prepared myself emotionally for living donation, including the possibility that the donation may not be successful and that I may be harmed in the process.
- I am physically ready: I am in great physical shape because I need to withstand major surgery, I need to have a healthy organ to donate, and I need to continue to live with one kidney.
- I am financially ready: I have the financial resources such as savings and paid time-off (vacation, sick days, short-term disability, etc.) to tide me over while I am being tested, in the hospital for surgery, and away from work while I recover. I also have insurance protection in the event I die, am disabled by the donation, or have ongoing medical needs following donation.
- I am spiritually ready: I am driven to donate by the right motives.
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.
There is controversy as to whether any potential living donor can truly give “informed consent” because of the absence of universal standards guiding living donor transplants and the relatively small amount of medical research on the long-term consequences of living donation. To address this issue, UNOS developed the Living Donor Informed Consent Checklist. The purpose is to get greater standardization in what potential living donors are told by transplant centers prior to agreeing to donate. However, there is no requirement for a transplant center to adopt these guidelines.
The medical research on the consequences of living donation is growing over time but is still limited. We share publicly available research results in the Living Donation in the News section of the LDO message board. You can also find a review of medical research on the Living Donor 101 web site.
If you find yourself in the position of being asked to donate, you might consider these issues:
- How do I feel about organ donation in general?
- Does my religion have a position on organ donation?
- What impact (if any) will donation have on my relationship with the recipient? My family members? Friends?
- Who else might be considered as a donor? How might we agree on who should be considered first?
- Am I OK putting myself at risk when the potential recipient has other options available such as dialysis and deceased donation?
- 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 or death of the recipient?
- Am I prepared for major abdominal surgery including pain, the possibility of complications, or even my death?
- Am I comfortable with my motives for donation? Do I expect some sort of compensation, publicity, or pay back for donating?
- Do I feel I have enough information to make an educated decision? What questions do I still have?
- Am I up to it physically? Are there current aspects of my health that I know should keep me from donating?
- Do I have any concerns about what my physical appearance will be after the surgery?
- Do I have a “support network”—family and friends—to help me through this process, or am I doing it alone?
- How will I feel if I am rejected during the screening process?
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, sometimes called an independent donor advocate. That 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 someone who is not part of the transplant medical team.
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 emotional part of donation.
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 and Facebook group are additional sources 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. 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. 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 are several organizations that can assist with covering your out-of-pocket expenses and lost wages, as described here.
Be sure you have medical, life, and disability insurance to protect you and your family in the event of complications following donation. You need insurance protection now in case any complications you have later affect your ability to get insurance. 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. If you donate through the National Kidney Registry, they also have an insurance program called Donor Shield.
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) to report concerns about the transplant program or the general experience with transplantation. The patient services staff can be reached by phone from 8:00am to 5:00pm Eastern, Monday through Friday.
To summarize, the goal at this stage is to get prepared. Here’s a suggested “to do” list to get started:
- Ask the transplant coordinator for a copy of the procedures the transplant center uses for living donation, read it, and ask questions.
- Read any other educational information about living kidney donation provided by the transplant center.
- Get answers to your questions from the transplant team. Click here for a list of possible questions to ask.
- Read this booklet, “Living Donation: Information You Need to Know”, published by UNOS. (This booklet is a PDF file requiring Adobe Reader on your computer or phone.)
- Visit these web sites that contain information on living donation: National Kidney Foundation and UNOS.
- Check your insurance and employee benefits. Look at your sick pay, short-term disability coverage, long-term disability coverage, vacation time, and life insurance and make sure you have adequate coverage.
- Evaluate your ability to cover out-of-pocket expenses such as lost wages, travel, child care, and housing. Make a budget for the time you’ll be testing, in surgery, and in recovery. You can get more background on potential expenses paid by donors and download a spreadsheet to help you with budgeting by clicking here.
- Review and update your last will and testament, living will, and durable power of attorney for health care.
- Get confirmation from the transplant coordinator that you will not have any medical expenses related to the living donation charged to you or your medical insurance. Get the confirmation in writing.
- Get your support network in place–spouse, family, friends, etc.–to lend a hand while you are testing, in the hospital, and recovering from surgery. You may need help with watching the house or apartment, watching the kids, taking care of pets, driving you around, cooking, and so on.
- Sign up for a Living Donor Buddy.
- Ask questions on the LDO message board or on the LDO Facebook group page.