"Fifty plus percent of the people that start the live donor workup get turned down because we find something that's wrong," says Dr. Charles Shield of St. Francis Hospital, Kansas.*

Making the choice to be a Living Donor is not a simple one, nor should it. Living donation involves a major surgery to remove a crucial organ; it is a procedure that provides the donor with no benefit and leaves her/him in a permanent compromised physical state.

The first thing to consider is WHY you want to be a Living Donor.

- Are you feeling pressured?

- Did the recipient ask you to donate?

- Are you worried about disappointing friends or family members?

- Are you afraid that if you decide not to donate people will think you're selfish?

- Do you feel you are the 'only' person who can save the would-be recipient's life?

In one study, 13% of living donors experienced emotional pressure to donate the kidney: from the recipient, other family members and from the medical team.(4)

Most recipients are the living donors' loved one, making the decision very emotional. Many people feel a 'duty' or 'obligation' to care for or look after their family member, which makes prioritizing one's own needs and wants very difficult.

Now more than ever, unrelated living donors (sometimes referred to as Altruistic Donors) are responding to solicitations from would-be recipients in need of a transplant. Billboards, newspapers and the internet offer would-be recipients opportunities to 'plead their case' to the public in hopes a living donor will present her/himself.  Often referred to as the 'rule of rescue', prospective living donors respond to the impulse to save an identified life (a trapped miner, child in a burning building) despite risk to oneself. This phenomena, especially combined with a religious belief, can be so powerful to cause an individual to engage in behavior incredibly detrimental to oneself.

It is imperative to remember that the decision to be a living donor doesn't just affect you and the prospective recipient, but others in your life as well:

- Spouse/Significant Other

- Children

- Parents, Siblings

- Friends

- Employer/Boss/Co-Worker

In one study, 13% of living donors believed donation caused conflict with their spouse. One living donor believed the decision had led to divorce (4). (See Risks page for more on relationship conflict)

No one wants to dwell on negativity, especially when so much of the language surrounding living donation is about heroes, giving, generosity, angels, etc. However, living donation does have short and long-term risks to the donor so taking the time to consider the 'worst case scenario' can bring some of these contradictory feelings into focus.

- How will my spouse/SO and kids be taken care of if I die or am incapacitated?

- How will bills be paid if complications arise and I'm out of work longer than I expect?

- Can I accept the lifelong higher risk of cardiac disease and kidney failure resulting from living with one kidney? (85, 95, 99)

- Can I afford the expenses of being a living donor (105 - also see Risks page)

- How will I feel and cope if the transplant isn't successful, if the kidney is rejected, or if the recipient falters and dies?

Expect a variety of reactions from family and friends. Some may be supportive while others may seem indifferent to your decision (or decision-making process). Others may express opposition to the idea, especially if the would-be recipient is a stranger or non-relative. Understand that these reactions are a result of their love and concern for your well-being. Since living donation doesn't occur in a bubble, and your loved one will be affected by the consequences of your decision, their opinions and feelings are worth considering.

***

While the psychological portion of the living donor evaluation is supposed to look for signs of 'coercion', many transplant centers are rather lax on the matter, especially if the donor is a relative of the recipient. If you are having doubts of any kind, please disclose these to the social worker or living donor coordinator assigned to you by the transplant center. (If a living donor coordinator is not assigned, ask for one - it's legally required by OPTN and CMS). They will offer no judgment and your statements will be kept confidential.

**If you do not feel comfortable discussing these issues with the transplant center's personnel, please contact an outside advocate here or at LODAP**

According to one study, 27% of prospective living donors 'voluntarily withdrew' from the process (75). Their reasons:

28% cited work commitments

28% had a ‘change of mind’ (often after consulting with their partners)

19% feared the risks of operation

10% were planning a pregnancy

and 15% did not wish to give a reason.

Pride, hubris, guilt and desperation are not healthy reasons for donating. Nor is futile to hope to 'get something out of it', or 'make up' for a past mistake. 

The choice not to donate is NOT a death sentence for the recipient. They have other options: the national transplant list, another living donor. People live for many years on dialysis. In fact, some fare better on dialysis than with a transplant.

You are not responsible for a would-be recipient's kidney failure; therefore, you are not obligated to treat their disease. 

A transplant is NOT a cure.

Many transplant recipients enjoy years of quality life after surgery, but some do not. Regardless of statistics, no one can guarantee how much life a recipient will have after a transplant, or how healthy they will be.

Most recipients will require at least one additional transplant in their lifetime. 

Meanwhile, a donor's lost kidney will never grow back and complete pre-op function will never be regained. In fact, in a study of 402 donors followed between 1964 and 1995, estimated GFR was reported at 72% of age-predicted value.(95)

Donating an organ does have risks and complications, both physical and psycho-social, both short and long-term. In fact, because living donors are not followed, many long-term issues are unknown.

It's imperative you Take Care of Yourself First.

*http://www.kwch.com/Global/story.asp?S=9365060

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