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When Malkia White found out her kidney was functioning at 12 percent, she knew finding a living donor would increase her chances of receiving a transplant. So, she created a Facebook page called “That Girl Needs a Kidney” to spread the word on how to be a living donor and why it’s so important.
Finding a living donor can shorten your wait.
Over 30 million people in the US are estimated to have Chronic Kidney Disease and almost 50% of patients with severely reduced kidney function are unaware of it. Options for patients with kidney function less than 20% are either kidney transplantation or dialysis. However, 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 with 13 people on the wait list dying every day.
There is another option other than deceased donor kidney transplantation and that is receiving a kidney from a living donor. One of the major advantages of finding a living donor is reducing the wait time from years to months with the time needed to schedule surgery being as short as 4-6 weeks if not shorter. This could be the difference between life and death. That’s why Malkia—and many others—have taken their search to social media.
If you need a kidney transplant, finding a living donor can reduce your wait time from years to months. Dr. Beje Thomas shares how social media can help via @MedStarHealth’s #LiveWellHealthy blog. #DonateLifeClick to Tweet
If they do not know, they cannot donate.
If you do not tell your friends and family that you need a kidney, they will never know. And if they do not know, they cannot help.
Did you know a living donor doesn’t have to be blood-related? Anybody over the age of 18 that is healthy can be a donor. They undergo extensive testing in order to be approved to be a donor.
Social media allows you to quickly share your story 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.
Here are tips to get your search started on social media.
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, or 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 even 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, we can place you and your donor 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. Malkia named her page “That Girl Needs a Kidney” because it clearly expressed what she needed, and it was easy for people to remember.
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:
Tagging organizations that you trust can also be a great way to get your message to those interested in being a living donor. (You can even tag @MedStarHealth!)
3. Tell your story.
Be honest about what you’re going through and how people can help. You may want your story to include things like:
- 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 waitlist
- 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. Recent kidney-transplant recipient John Bayton asked for help from a friend to create a story that would resonate. Don’t be afraid to reach out to others if you’re struggling to find the right words!
4. Post photos and videos that educate others.
Malkia uses her page as a platform to educate followers on the reality of renal failure. She shares enough detail to help people understand her personal experience but is careful not to share photos or videos that may be too graphic. She also posts encouragement for others who are going through the same things.
John suggests looking at what you follow to see what kind of things will engage your followers and generate more views for your page. “What are you most likely to respond to? Share those kinds of things,” he says.
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.
"I have so much more to live for,” says Malkia. “I tell everybody to please share my page and posts. And if you’re not tech-savvy, find someone who is so they can show you how to click the share button.”
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.
Malkia uses a landline number that she checks periodically. This way, she doesn’t have to worry about receiving calls at midnight and it protects her privacy. 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 cautiously. Remember that it is illegal to exchange money, services, or goods in exchange for a donated organ.
7. Create a free personalized donor search website.
MedStar Georgetown Transplant Institute, in partnership with the National Kidney Registry offers recipients a free personalized website which allows you to share your story and the reason you need a kidney. This website has a direct link to the donor questionnaire for anyone who would like to consider donating to you. You will also receive 250 business cards with your website link to pass out in order to further share your story. If you are interested in creating a personalized website, contact your transplant coordinator.
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 only takes 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.
Malkia and John both attend monthly support groups offered through the MedStar Georgetown Transplant Institute.
“You all have one thing in common. You're either looking for a kidney, you're on dialysis, you've had a transplant, or you're a caregiver or family member who's providing care to someone in those categories. It's nice to have people who know what you're going through because they're in the same situation,” says John.
Malkia adds, “It’s extremely helpful to be around people who will honestly share their stories. It's a place of confidentiality where you can laugh, cry, or just sit and listen. You can gather a lot of information from those who have already gone through this process, and every meeting gives me a boost of confidence and ideas for how to share my story.”
Want to learn more about searching for a living donor online? Watch Malkia and John discuss their experiences using social media to find a donor.
In addition, check out these resources: