Given the advantages of a living kidney transplant, how does someone find a person willing to be that living kidney donor? The fear, concern and worry over asking someone to donate a kidney can be overwhelming. Consequently, many kidney patients approaching end stage renal failure, or those already on dialysis may choose to not even pursue living donation.
Kidney patients may have many reasons to not consider living donation:
- Fear of surgery
- Lack of information about the living donor transplant process
- Concern for the living donor’s health
- Worries about the inconvenience and/or financial impact on the living donor
- Feeling like they don’t “deserve” someone else’s kidney
- Some don’t want to feel “indebted” to a living donor
- Worries about what could happen to their relationship with a friend, colleague or family member if they ask them for a kidney
- Fear of feeling rejected if a potential living donor says no
- A need to not feel reliant upon others
- Hesitation to talk about their illness at all
- Guilt about asking someone to give up a kidney
Some of these concerns may be diminished through education. Fear about the health of the donor is legitimate but it is important to know that living donors generally live healthy, normal lives with one kidney. A transplant team, including a surgeon can help a kidney patient understand the surgery process and recovery. A social worker on the team is a great resource to talk to about guilt, deservedness, indebtedness and fear of rejection. Financial concerns for the donor can be answered with information about programs that reimburse most costs associated with being a living donor.
HOW TO GET THE WORD OUT?
For many transplant-appropriate kidney patients the answer to the question, “How do I approach someone for a kidney?” is “You don’t”. It is more about letting a large number of people know about your situation and the need for a living donor to come forward on their own. The greater the number of people who are aware of your situation, the more the word spreads.
Some people like to think about the values they share with their friends, family and acquaintances. Perhaps this circle is of great social support and share values of altruism. Or perhaps this group is noted for its service within the community. These shared values could lead to an opening to explain your need for a living donor. Large numbers of living donors have come forward due to their spiritual belief in helping their fellow-man.
It is important to have a compelling short story about your need. A good 30 second story can get someone’s attention and create a situation where they are interested in finding out more.
Practice responses to commonly asked questions from people to whom you tell your story. For instance, have an answer if someone asks “Must I be the same blood type as you?” and be ready to talk about available options such as the Kidney Paired Donation Program.
Also, have an understanding of programs that can help cover some of the costs to be able to alleviate some fears about expenses.
If anyone shows real interest in being a living donor, be prepared with contact information for your transplant hospital but be sure to let them know that they can back out of the process at any time.
The key to the short story is wide distribution. Some people print up business cards with their picture and a few words about their kidney disease and their need for a living donor. Be sure to add all your contact information.
The story about your medical situation could also be put in a letter or email. Some people use social media and or a personal blog to get their message out. This may have the effect of reaching people you had not anticipated.
Advocates are an excellent resource. Rather than telling your own story, you might ask a friend or family member to be your spokesperson.
Sometimes breaking the ice with a conversation-starter can lead to more information being distributed. A T-shirt stating your need for a kidney (Got Kidney?), a unique piece of jewelry like an organ donor pin or green organ donor ribbon that attracts attention and allows an opening for conversation can be effective. Business cards and flyers are handy to reach out to large groups of people like a sports group or church congregation.
Advertising for a kidney is not illegal but you must be clear that it is illegal in Canada to pay a person to be your living donor.
Don’t be discouraged if no one steps up right away to be your living donor. Time is needed to absorb what you have told them.