Big Dumb FAQ

1. Who can donate?

Donors are often a close relative such as a parent, brother or sister, son or daughter but may also be individuals who are not related but have an established emotional relationship with the recipient such as a partner or close friend. Many kidney donors do so altruistically not knowing the person directly, particularly now with social media. Sometimes a donor and a recipient may be incompatible with each other because of blood group or tissue-type and in this case it may be possible for them to be paired with another donor and recipient in the same situation. This means that each recipient will benefit from a transplant that they would otherwise not have had (this is called paired exchange donation). Donors may also offer to give a kidney to someone who is on the waiting list for a transplant but whom they have never met before (this is called non-directed altruistic donation).

2. How will I know if I am suitable to donate?

Once you have expressed your interest in being screened as a donor, the transplant center will assign you a donor coordinator. In order to protect your privacy, this coordinator will have no contact with the kidney recipient in order to protect your privacy. The recipient will not even be informed the donor has volunteered unless you tell them. You will then undergo blood tests to determine your blood type matching, medical tests to determine your overall health status and a visit with a social worker to provide emotional support and assess your motivation. At any time during the process you may change your mind, and the social worker will assist in protecting your declination in a way that preserves the relationship. All of these tests and meetings are covered by the recipient’s insurance. The donor’s only out of pocket expenses would be any travel expenses related to the visits and the recipient is allowed to reimburse you for these costs.

3. Do I need to be related to the person who may receive the kidney?

While it is commonly family members who offer to be kidney donors, there are often spouses, friends, members of the community, or people from the same place of worship who can be highly successful kidney donors. Being related is not a requirement to donate a kidney, and some donors have donated altruistically without specifically knowing initially who will receive their kidney.

4. Are there any risks to the donor?

All operations carry some risk and this is no different for living donation. There is a very small risk of death for the donor: this is estimated at 1 in 10,000 for this operation. See other successful donors that have looked at any of the risks and donated.

5. Are there any long-term risks?

Studies have shown that there is no long-term effect on the health of the donor or your remaining kidney. If for any reason the kidney donor’s remaining kidney should fail later in life, they will be placed at the top of the waiting list for a new kidney.

6. Will I have to change my lifestyle after donating?

There is no specific reason why you should not be able to lead a normal healthy life as before.

7. Will donating my kidney affect a future pregnancy or fathering a child?

The small amount of data available shows that, having donated one kidney, there is no evidence to suggest an increased risk of complications during pregnancy. A man’s fertility will not be affected.

8. Will my health insurance cover the cost of donating a kidney?

Prior to your first visit for donor screening, the transplant center will verify the kidney recipient’s insurance coverage to make sure all of your medical expenses are covered, including lost wages. Kidney donors usually require caregiver support during recovery, the cost of which is reimbursed either by the recipient or through FMLA. Although recipients cannot pay donors for donating, they are legally allowed to reimburse donors for out-of-pocket expenses; sufficient documentation is required to ensure there is no confusion as to why the money changed hands. You will have absolutely no out of pocket expenses. The donor’s insurance and Medicaid will cover 100% of your medical bills. Furthermore, your medical bills for care related to kidneys for the rest of your life will be covered by the donor’s insurance.

9. What if I live in a different part of the country from the person who receives the kidney donation?

You can still donate. The donation will take place in the hospital where the person you are donating to is cared for. Arrangements can be made depending upon individual circumstances for both the donor and recipient. All travel and living expenses will be covered.

10. How long does the donor assessment process take?

This varies by transplant center. Some centers schedule the entire screening process within a several day period which drastically speeds up the process. Others take longer and schedule individual tests over time. They attempt to work around a schedule that accommodates the donor.

11. How much time will I need to take off work?

Most transplant centers will try to arrange the screening tests around your work schedule to minimize disruption to your job. It is sometimes possible to arrange for some of this to be done locally if the donor lives a long way from the transplant center. The surgery and recovery period varies depending on surgery, your individual recovery, and the type of work you will be resuming. Many people who have a desk job are back to work in three weeks. If your job is physically demanding, you might need six weeks or more to resume all of your prior activities.

Many states have laws requiring employers to provide up to 30 days of paid leave for organ donors. You should be able to find out if your state is one of them by contacting the National Kidney Foundation or searching the internet for “Paid leave for Organ Donors”.

12. How long will I be in the hospital?

This varies depending on your individual recovery. Many donors only spend one day in the hospital. It is not uncommon for someone to have to spend two or three days in the hospital to recover.

13. Will I need to take any medication after donating?

You may need to take some painkillers immediately after the operation and during the recovery period. However, you should not need any long-term medication as a result of kidney donation.

14. What about follow-up?

You would usually be seen by the transplant team between two and six weeks after donation.

15. Do some donors have trouble making the decision?

Some people make the decision easily. Others go through some soul searching before deciding. Being afraid of donating a kidney or feeling guilty about not wanting to donate is quite normal. The only “right” decision is the one that makes you, the potential donor, feel comfortable. Finding out more information about living donation and what it involves may help you with this decision.

16. Can I speak to somebody who has donated?

Yes, meetings with successful donors can be arranged. Your coordinator at your local transplant center should be able to arrange this for you. Also, ask about the Living Kidney Donors Network Mentors Program.

17. What if I decide that being a donor isn’t for me?

Of course you have the right to withdraw your offer at any time and you would be supported in your decision by the transplant team. Your transplant donor coordinator and social worker will help you through this process and the proper communication to the kidney recipient.