It is estimated that more than 30 million people in this country have chronic kidney disease. Of that number, almost 50 percent of patients with severely reduced kidney function don’t know it. Options for patients with kidney function less than 20 percent are either a kidney transplant or dialysis. But the wait can be several years for a deceased donor kidney transplant, with about 100,000 people on the wait list. Many patients do not live long enough to receive a transplant; 13 people on the wait list die every day.
There is another option: Receiving a kidney from a living donor. One of the major advantages of finding a living donor is reducing the wait time for transplant from years to months, with the time needed to schedule surgery being as short as four to six weeks—if not shorter.
That difference could be life and death.
But if you don’t tell friends and family you need a kidney, they will never know. And if they do not know, they can’t help.
Did you know a living donor doesn’t have to be a blood relative? Anybody older than age 18 and healthy can be a donor. They undergo extensive testing in order to be approved first.
How can you widen the net of potential donors? Social media. This allows you to share your story quickly with your entire network of friends and family. What’s more, your social circle can share your story with their networks, allowing more people to hear about your need for a donor.
Finding a living donor online may sound overwhelming when you’re feeling the physical and emotional stress of kidney disease and dialysis. But sharing your story on social media is quicker and easier than you may think. Popular social media channels include Facebook, Twitter and Instagram. Each channel has its benefits, but Facebook may be your best option for quickly getting your message out to more people.
Try these tips to get started in your living donor search:
1. Create a page separate from your personal account. It’s important to maintain a boundary between your private life and your public search for a kidney, so consider creating a Facebook page that is separate from your personal profile. If you’re not tech-savvy or the social media world seems intimidating, ask a family member, friend or someone at your transplant center to help you. You should not mention your blood type. If a potential donor does not have a compatible blood type to you, you and your donor can be placed in a paired kidney exchange program.
2. Create a memorable name and hashtag for your page. A unique name can help your story stay fresh on the minds of those who visit your page. Using hashtags on your posts will allow other people searching for those hashtags to find your story, which can increase your visibility. For example, someone in New York who is interested in becoming a living donor may search #BeADonor on Facebook and find one of your posts. You can come up with your own hashtags, but it’s also a good idea to use popular terms associated with living donation, including:
- #KidneyTransplant
- #BeADonor
- #LivingDonor
- #DonateLife
Tagging organizations you trust can also be a great way to get your message to those interested in being a living donor.
3. Tell your story. Be honest about what you’re going through and how people can help. You may want your story to include:
- Your personal journey to diagnosis
- How your disease has impacted your life
- Your family (and why they cannot donate)
- How long you’ve been on the wait list
- Your transplant center’s contact information
It can be hard to write about yourself, but it’s important for people to relate to your story. Reach out to others if you’re struggling to find the right words.
4. Post photos and videos to educate others. Share enough detail to help people understand your personal experience, but be careful not to share photos or videos that may be too graphic. Post encouragement for others who are going through the same things.
5. Encourage friends and family to share. Post likes are great for boosting confidence, but what’s more impactful is when people share your posts because that’s how your story spreads to a wider audience.
6. Share carefully and legally. You’ll want to provide a way for interested living donors to get in touch with you, but you may not want strangers to reach you 24/7 on your cell phone. You might want to get a landline number you check periodically. This can protect your privacy and keep you from receiving calls on your personal line at odd hours. Another option is to use technology like GoogleVoice to set up a number that can forward calls wherever you’d like them to go. Your transplant center can advise you on ways to share health information. Remember: It is illegal to exchange money, services or goods in exchange for a donated organ.
Surround yourself with support while you wait. You may find a living donor right away—or it may take a lot of time and effort. It’s normal to feel discouraged, but stay positive and keep trying. It takes only one donor to get a transplant. Support groups can help you stay motivated during your search. Whether you join a support group online or in person, you’ll find people who will understand what you’re going through and can offer advice.
