Living Donor Grief

Grief, in and of itself, isn’t pathological; mourning is simply a recognition of change. Even something desired or positive can result in feelings of loss for what one has left behind (switching jobs, moving, etc). Becoming a living donor is a life-altering event, the consequences of which are life-long; it’s natural to grieve for one’s pre-donation person and body.

Participants described how they experienced a sense of loss or grief after donation: “When you have a child, you’re going to come out of the operating room with something. And now you’re going into surgery and you’re coming out of there without something.” Another participant expressed his powerful emotional response after donation: “I guess the full impact really hit home. I just started bawling like a baby for some reason, and at that point I just completely lost it.” (132)

Common Symptoms of Grief

Shock and Disbelief
Sadness
Guilt
Anger
Fear
Fatigue
Nausea
Lowered Immunity
Weight Loss/Gain
Insomnia
Aches & Pains
Social Withdrawl
Anxiety or Restlessness
Lack of Concentration
Loneliness
Confusion
Yearning

What Might a Living Donor Grieve?

– Being excluded as a living donor, or having the transplant denied or delayed.

– The end of the donation process. Think of the ‘let down’ after a big, long-planned event.

– The recipient’s death or continued illness.

– The living donor’s pre-donation, complete, uncompromised body.

– Any physical changes as a result of the donation.

– The lack of a renewed or closer relationship with the recipient.

Sometimes, other people don’t understand the living donor’s grief, which causes feelings of isolation, guilt and shame. This is referred to as Disenfranchised Grief

Grieving is a very individual process without a time table. There is no ‘right’ way to grieve, and how we cope depends on our history, personality, faith, and type of loss. There is nothing shameful about grieving, nor should we be embarrassed about our feelings of loss. 

 Sometimes we get ‘stuck’ in our grieving process. This is known as Traumatic and Complicated Grief 

It would be natural for a struggling living donor to seek solace in the company of other living donors. Unfortunately, there is a dearth, if not complete absence, of community or transplant-related support groups for living donors, so most turn to the Internet. While most living donors are sympathetic, some are only interested in perpetuating their identity as ‘heroes’ or ‘martyrs’ and will engage in victim blaming and denial when confronted with these issues. It is imperative to ignore those messages and find comfort in those who are accepting and understanding.  

Coping With Grief

Living With Grief and Loss

Helping someone who is grieving (see page 8)