People take to social media to find living donors for kidney transplants

Thousands of people in Alabama have kidney failure and many are in need of kidney transplants, but the number of patients greatly outnumber available kidneys. Many have taken to social media to find a living donor.

Annitra McGowan was diagnosed with stage three kidney disease four years ago. Her health declined further after getting COVID-19 in 2021.

"Now I am at an 8% kidney function. I did go on dialysis about a year ago," said McGowan. "I am doing very well on dialysis, but it can be kind of, it is mentally challenging having to do this every night for nine hours. Some days I feel very tired."

McGowan is on two transplant waitlists, one at Vanderbilt University Medical Center and another at UAB Hospital.

It's been difficult as she's looked for a donor.

"That's a big decision for someone to make to be a donor. I can't expect for people to just say 'Hey, I am going to give you my kidney.' It's not like asking to borrow a few dollars," said McGowan. "I have to be mindful of that, how other people are feeling about it when I ask. It took me a while to actually ask because of that reason."

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When she felt comfortable she took her search for a living donor to a Facebook group where posts are made for kidney donations daily.

"I thought it would be the fastest way to get it out to the masses that I needed a donor. I was hoping that it would be, that someone would respond much faster. I still think it's a great avenue for someone to take to get a kidney donor," said McGowan.

She's made several friends from the groups. One person volunteered to be her donor and has been through the prescreening phase.

McGowan is waiting to see if they are a match, but she's still searching for other potential donors.

"We have just been hoping and praying for a kidney donor sooner than later," said McGowan. "It would mean the world to me. I would have a better quality of life to spend with my family, my children."

The American Kidney Fund said with the rise of social media, it isn't uncommon to see people post their stories online. There are dozens of groups on social media connecting donors and recipients.

"It's a great way of getting your story out there, finding someone who may be interested in being a match with you. There are many health care institutions that have recommendations on how to best use social media to start your search," Tamara Ruggiero, American Kidney Fund Chief Communications Officer.

Some recommendations for searching for a donor online include:

• make a page separate from a personal account
• create a memorable name or hashtag for the page
• tell the patient's story
• post photos and videos to educate others
• encourage friends and family to share
• share information carefully and legally

A woman recently posted in a Trussville community group that she was looking for a donor. Several people volunteered in the comments.

That willingness to help is vital.

UAB's kidney transplant program does around 300 transplants each year.

"Unfortunately, the availability of organs from deceased donors is not enough to meet the growing need of our thousand people that are waiting on the waiting list," said Ellen Bridges, Living Donor Coordinator. "There is a huge need for kidneys. Living donation is the fastest way for most of the people on our list to get a kidney. Living donation takes, from when you're approved, one to three months for surgery."

Without a living donor, someone can be on the waiting list for one to seven years. UAB's living donor program is trying to bridge the gap.

Many people call with a specific person in mind to donate to, but almost 50 % of pairs aren't a match. Those pairs are encouraged to continue with the process.

"We will pair you with another incompatible pair. You will end up donating to their recipient and their donor will donate to your recipient," said Bridges.

People can be non-directed donors too, meaning they volunteer to donate without a particular person in mind.

For a UAB patient referral form and information for the transplant app, click here. Anyone with questions can call 1-833-822-2841.

To be a living donor, a person needs to be in good health and have no chronic health conditions.

The donor process starts with an online or phone screening. A coordinator will then call the potential donor to go through the screening.

After the screening process, the donor will come in for an evaluation day at UAB for extensive testing including testing their compatibility with their specific recipient. If the person is a non-directed donor, compatibility testing will be done at a different date once a recipient is identified.

The surgery takes two to four hours with a one to two-day recovery period in the hospital. It's recommended the donor not lift anything greater than five to ten pounds for six weeks which could impact when a person can go back to work.

"If you work at a desk job, you can go back earlier. We just don't want anyone to do anything really strenuous for six weeks," said Bridges. "A donor is at no greater risk of any health problems than someone their age with two kidneys as long as they maintain a healthy lifestyle."

Bridges said social media has helped patients.

"People that don't have someone they can specifically ask, a family member or friend, but they have this way of social media. They are able to put it out there that they need a kidney. That's hard for a lot of people to ask but putting it out there on social media, a stranger could be the one that ends up seeing it and being the donor for them," said Bridges.

"Being a living donor is probably one of the most altruistic things you can do in your life. You are saving someone's life. You're getting them off dialysis. You are giving them such a better quality of life when they have a functioning kidney transplant," said Ruggiero.

The American Kidney Fund believed more state and federal policies to protect living donors would encourage more people to volunteer. Those protections include:

• job-protected leave for donors from public and private employers
• tax credits for employers who provide leave
• paid leave through the Family and Medical Leave Act
• more than 60 days of leave
• direct reimbursements, tax credits, or tax deductions for donor expenses
• protection from life, disability, or long-term care insurance discrimination

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AKF sends out yearly report cards for each state regarding donor protection policies. Alabama's 2023 report card grade was an F, as there are no laws in place for the protections AKF listed. The national grade was a C.