There are many reasons why someone who is in need of a kidney transplant does not pursue a living kidney transplant. The two most common obstacles are, not knowing all the facts about living donation and apprehension about asking someone to donate. Learning about living kidney transplants is the first step to success, second is to develop a clear message letting other people know about your need. The more knowledge you have about living kidney donation, the more likely you’ll be willing to discuss you need with other people.
Most living kidney donor recipients don’t directly “ask” someone to donate. Kidney donation is a Gift of Love, and Gifts are given, not asked for. Every donor/recipient story is unique. There are common messages that you need to convey and techniques you could use to let people know about your need. However, someone who might be willing to donate is unable to do so unless they know about your need.
Try to develop a team of people who will help support you during the process, medically and personally. The more people helping you achieve your goal the better your chances are of being successful. Start to think of yourself as the team leader, the one who will be coordinating the effort to let the people you know and love learn about your condition. Your family and friends and other people you meet will help you convey your need.
Your Advocates: Medical and Personal
When someone mentions your Transplant Team, most people think of the Medical Staff, nephrologist, surgeon, etc. This group is obviously an important component of your Team, but they are not the only members. In fact, you may want to have some help coordinating your contact with the hospital. For example, it may be a good idea for you to have someone with you during your medical appointments. Having another set of eyes and ears is always a good idea when seeing doctors. Writing all of your questions down, reviewing with your advocates beforehand and making sure that your medical team answers all of them is a good idea. Your medical advocate can also do much more for you, (e.g., navigating insurance, confirming appointments and other matters that will develop).
Your Advocates; (no limit on how many you can have,) will mostly likely be close family members and friends. However, other people may develop a connection with you and choose to let other people know about your need. The best Advocates are ones who are most knowledgeable about you, so you’ll need to educate them about your condition, your need and Living Kidney Donation. Advocates will also have to explain to others they speak to why they themselves are not able to donate, whether it’s due to a previous medical condition, incompatibility, or some other reason. Some Advocates might take a more direct approach and actually ask people directly if they will consider donating. Whether it is you or an Advocate speaking, the message must come from the heart, so there shouldn’t be any “canned” messages. Each Advocate should express your need in his or her own words.
After you educate your Advocates you should stay in touch with them. Keep them up to date on your progress and share with them your successes and challenges. They may be able to provide you with valuable feedback.
There may be someone who is a suitable donor but is not compatible with you. For these instances, you can talk about the Kidney Exchange programs that are offered at your hospital, (there are registries with programs that enable the matching of one incompatible donor/recipient pair with another incompatible pair). You should ask your transplant coordinator to provide you with information about their programs and ask them if they would meet with your potential donor to discuss these programs in more detail.
When Speaking to Someone:
The first few people you speak to will probably be the hardest as you struggle with the words. Speak from your heart. Find a person who will listen with support and encouragement, then role play with that person until you feel comfortable conveying your message. Start talking to family members and friends. Get comfortable telling your story.
More Ways to Reach Out - The Media and More…
Local print outlets, radio and television stations may be interested in doing a human interest story about you. Many of these companies have a “Health Editor” who may already know about the challenges facing people who need a kidney transplant. A local story will not only reinforce to the people who know you, but could also reach other unknown potential donors. There are many stories about people donating to someone who they haven’t connected with for many years but heard about them through reunions, out of town conventions or even casual relationships. (For example, the Starbucks barista who donated to a customer). There were over 6,700 living kidney transplants in 2007, all having their own unique story.
To help media outlets show an interest in you, prepare something in writing that you could send to them. If you feel that you do not have the ability to write something, ask for help. If you don’t know of anyone who could be helpful, go to your local high school or library, which should be able to help find a resource for you.
Schools, churches, community centers, not-for-profit and many other organizations have newsletters. They might be interested in writing a story about you, too.
You should reach out to your church or other place of worship which can inform the congregation of your need. Many people have donated after finding out about someone’s need at their place of worship. (Click here to see a letter that was sent out to parishioners after the Pastor spoke about one of the congregants need for a kidney transplant.) Caring individuals and people who work in public service areas also tend to be donors. These references are not meant to have you target people as much as to understand that your pool of potential donors will likely fit within the category of a “caring” person.
When Someone Offers to Donate, What’s the Next Step?
The first thing you’ll want to do is thank that person. You will want to express to them that at any time and for any reason if they feel that they do not want to continue with the process that they will always have the option. You appreciate what they are doing but know that they might change their mind and you don’t want them to feel any pressure to continue. You should provide them with the name of the donor transplant coordinator at your hospital to discuss the evaluation process.
Just because one person offers to be a donor doesn’t mean you stop the process of reaching out. You want to have backups in case that person doesn’t work out. It might take a month or more for someone to be evaluated. Don’t lose that time should they not be a suitable donor.
Also, ask you hospital if more than one person could be evaluated. Each hospital has developed a policy for evaluating potential donors.