Advance with MUSC Health

Hope for the Future

Advance With MUSC Health
December 21, 2021
Hope and her family.
Hope and her parents.

Viral Kidney Request Strengthens MUSC Health's Living Donor Transplant Pool

Some people go viral from a funny tweet or an embarrassing video. Hope Walters gained a sudden swell of attention from her social media plea for a kidney.

"This is all very new to me, but my team of doctors told me this is the best way to spread my story and get the word out," her post from July 19, 2021 began. "So, I'm reaching out to y'all with the hope that you can help me share this news. I am 19 years old and I live in Mount Pleasant, South Carolina. I just learned that I need a kidney transplant and that a living donor is my best chance for survival."

The post was quick to reach viral status, likely due to shares by popular accounts, such as Cameran Eubanks, formerly of Southern Charm, with her 1 million-plus following, and Instagram-famous local business, Sullivan's Island Co-Op, with its post reaching over 40,000 Instagram accounts and over 20,000 Facebook accounts.

Hope's original post reached over 90,000 accounts on Instagram alone. On Facebook, her post was shared almost 2,000 times.

As the love poured in, so did the volunteers. Hundreds contacted MUSC Health's Transplant Center offering up their kidney. MUSC has never seen such a tremendous response to one patient. Strangers wanted to be Hope's best chance for survival.

As luck would have it, Hope's best match turned out to be her mom, Louisa Walters. But with new donors now added to MUSC's living donor pool, the effect of that courageous social media request will be immeasurable. It will continue to impact countless lives for a very long time.

How it began

Hope discovered she had chronic kidney disease when she was 17 years old, while very far away from home. An avid traveler, she was in the middle of Patagonia, Chile when her body told her something was wrong.

"I was having some problems with my stomach, pain in my back and urinating problems," she says. Hope was rushed to the nearest hospital - eight hours away. "They did a sonogram and found out that one of my kidneys was smaller than the other one, and the bigger one was very scarred."

She returned home to South Carolina, where a biopsy indicated she had stage three chronic kidney disease. With her mom beside her every step of the way now, Hope began to see MUSC Health pediatric nephrologist Dr. Katherine Twombley.

"Dr. Twombley was attentive and the best thing to happen to us." Louisa says. "It felt like she was there for us 24 hours a day."

Then came the summer of 2021. Hope was emerging from her freshman year at the College of Charleston, her life revolving around living in her first apartment, hanging out with her roommates and going out to eat with friends. She'd escaped the Lowcountry heat for a moment with her family in the mountains when a new round of bloodwork revealed creatinine levels too high for comfort.

It was time to go back home, again. Now with stage five chronic kidney disease, Hope was placed on the transplant list and the match process commenced.

Support from near and far

Since family members are not always a match, Hope sat down with MUSC Health Living Donor Specialist Eddie Hall, who coaches recipients on how to best get their story out in hopes that a stranger or friend (or friend of a friend) would see it and get inspired to come forward to donate. It was Hall, a living kidney recipient himself, who helped Hope put together the social media post that garnered so much attention over the summer.

"When I educate our patients about how to reach out to the community for a living donor, I teach them that a huge part of their 'ask' is explaining their story, their background, their life," Hall says. "That way, their readers can really see how the gift of organ donation can affect not only one person's life but also the lives of the recipient’s loved ones."

Hope received personal messages from people all over the country. "They told her about how they had been through this process and to hang in there," Louisa says. "And it made her realize she was not alone in this as a 19-year-old. There were just so many people supporting her that she had never met and sending prayers to let her know that she was going to be OK, that she was not fighting this battle alone."

Hope never realized how common it was to need a kidney transplant. She read messages from people who had been to MUSC and raved about the doctors. She was even contacted by people outside of the U.S. who wanted to help. "I had somebody who said, 'I'm from South Africa, I can donate, I can travel,'" Hope says. "And that was just incredible to see."

Matching with Mom

Luckily, Louisa's kidneys were the best of the bunch. In fact, doctors said her kidneys were as healthy as a 19-year-old's should be.

'I didn't think I was going to be a match, because I'm so much older," Louisa says. "But Dr. Twombley said my kidney exceeded expectations. My husband and I kept going back and forth asking, 'What's going to be the best for Hope?' And Dr. Twombley just said, 'We choose you.' I felt like I was on The Bachelor!"

So now Hope has not one, not two, but three kidneys ("which is very cool to say," Hope notes): two are non-functioning, while the other is a piece of her mother that she can always carry with her.

It's also a fitting birthday present: Hope left the hospital on October 16th, the day she turned 20.

"It was a very special birthday, even though she doesn't remember a lot about it," Louisa says. "It means a lot more special birthdays, many more years of health."

The gift that keeps on giving

Hope and her mom ringing the MUSC bell.

Now, Louisa, Hope and Hope's new kidney are doing well, with mom and daughter fussing over the best space on the parents' sectional couch. Soon, Hope will be back to her life at her downtown Charleston apartment. That's what she's looking forward to the most: going home and feeling good. "Before, I would just get so tired; I had low energy and I wouldn't be able to keep up," she says. "I just want to be active and happy and feel good again."

That's what makes the gift of living donation so worth it. Just ask Louisa.

"Hope wants to get back to traveling and to just go back to her apartment," she says. "Whether it's traveling or the small things of going back to your apartment, donation can give someone their livelihood back. And living donation is not just the gift of physical health but also mental health because you're giving someone peace. So to give all of that to someone and help them feel better, I think most people should realize that it is a gift to someone."

And for those on the transplant list at MUSC Health Transplant Center, living donation is the gift that keeps on giving. The center has started working with several new potential donors because of Hope, but more are expected to complete the process in the coming weeks.

"We got very lucky with the response Hope prompted," says MUSC Health Living Donor Program Facilitator Lilian Jarvinen. "...And while ultimately it was her mom who donated to her, that social media response allowed us to reach out to those hundreds of people and say, 'Do you want to continue as a Good Samaritan, or a non-direct, donor?'"

Non-direct, Good Samaritan donors are donors who have no relation to any particular recipient but decide to donate to a stranger because it feels like the right thing to do. With nearly 1,000 patients currently on the MUSC Health transplant wait list, Good Samaritans can impact a lot of lives.

One non-direct donor, for example, can potentially begin a living donor transplant chain, which is when more than one pair of incompatible-but-willing living donors and recipients are linked with other incompatible pairs or a non-direct, altruistic donor. A chain of four can save two lives; a chain of eight can save four. Every life involved is changed.

"The fact that Hope was brave enough to put her story out there, make that post public and get really lucky with how it was shared, that is going to continue to affect the people on our waitlist," Jarvinen says. "Each time that a Good Samaritan comes forward, it increases other patients' chances of getting off the waitlist faster."

Jarvinen continues, "I think that we're going to continue to see that impact because of how many people have said, 'Yes, I'll continue the process. Hope got another donor but I still want to help someone else.'"

Learn more about the MUSC Health Living Donor Program.