If you have end-stage kidney or liver disease and are exploring living donation, you’ve probably gotten a lot of advice about finding a donor. One piece of advice seems simple but may be harder to do than you expect: to find a living donor, you need to tell your story.
You know your story better than anyone else, so it should be easy to tell, right? But sometimes it’s hard to figure out exactly what to say to potential donors. Telling your story may make you feel like you’re asking too much of others, or it may make you feel vulnerable.
Whether you’re asking for help on social media or in person, you’ll be better prepared if you write things down.
Below you will find tips to keep in mind while writing your story — and examples of what to say. If you still have difficulty, try writing the story from a family member or friend’s perspective.
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Set the Tone of the Conversation
A transplant is a serious procedure, and the conversation should reflect that. While you do need to be careful not to frighten a potential donor, you also want to be honest and help them recognize that what you are going to say is important. Here are a few examples:
“Okay, here goes – a life-changing request. You all know my dad, but you may not know that he has been extremely sick.”
“This is a big request, and I know that, but it’s something I need to share. For those of you who don’t know, I have suffered from kidney disease my whole life.”
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Your Diagnosis Is Important, but so Are You
You may be suffering from end-stage kidney or liver disease, but your diagnosis does not define you. Your story should explain your situation and why you need a transplant as well as who you are as a person. You want potential donors to see that they have a chance to save a life. Things you might say:
“My mom has suffered from diabetes her whole life, but she is much more than her disease. She is a mother, a friend, a teacher, and the list goes on. But today she needs your help.”
“As many of you know, I am a husband and a father of a beautiful family. What many of you don’t know is that I am also in need of a life-saving liver transplant.”
When Is Just as Important as What
Not everyone will understand the seriousness of your situation. Share this urgency so that those you talk with will recognize that it is a time-sensitive matter. Sharing how long you have had the disease or how long you’ve been waiting or will have to wait for a deceased donor organ can get your message across. Words that can help you frame your comments include:
“I have suffered from polycystic kidney disease my entire life, but it has reached the point that I need a transplant to survive without dialysis.”
“We need to find my sister a suitable donor as quickly as possible. She could wait years on the liver transplant waiting list, but she might not reach the top of the list in time.”
A Call to Action
Even if you don’t want to ask someone directly, be sure to share resources on how to become a living donor, other ways to help you for those who aren’t able to donate, and how to contact you. Chances are someone will step forward to help without being asked. Here are some suggestions:
“I am determined to beat this, but I need your help. If you want to learn more about living donation, send me a private message.”
“Whether it’s being evaluated as a potential donor or sharing this post, we need all the help we can get. Reach out to me or any other family member if you’re interested in learning more about living donation.”
While these are all great suggestions for helping you write your story, it’s most important to stay true to yourself. Use this as a guide, but be sure to personalize your story and tell it your way.
Once you start telling your story, it will get easier. The Living Donor Champion Toolkit has examples of posts and posting pointers if you are looking for a donor through social media.
If you are having trouble asking someone to be your living donor, ask someone to help you find a suitable donor by becoming your Living Donor Champion. Visit UPMC.com/LivingDonorChampion to learn more about how a Champion can help you find a suitable living donor.
About Transplant Services
Established in 1981, UPMC Transplant Services is one of the foremost organ transplant centers in the world. Our clinicians have performed more than 20,000 organ transplant procedures, including liver, kidney, pancreas, single and double lung, heart, and more. We are home to some of the world’s foremost transplant experts and have a long history of developing new antirejection therapies—so organ recipients can enjoy better health with fewer restrictions.