Donate Life: MUSC Health’s Living Donor Program and All That It Entails

At its core, the MUSC Health Living Donor Program changes lives — be it the life of a patient who has been on dialysis for years; the lives of family members worried yet hopeful about their loved one who awaits a kidney match; or the lives of the donors willing to give up a part of themselves to save and/or alter someone else’s life. Sometimes that someone is a total stranger.

“It can be a living donor who comes forward with an intended recipient in mind,” says Living Donor Program Facilitator Lilian Jarvinen. “Or they can come forward as what we refer to as a good Samaritan, or non-directed donor, who has no recipient in mind — they just want to help whoever needs a kidney.”

Also called an altruistic donor, a good Samaritan can start something known as a transplant chain. 

 

“The non-directed donor can come forward and start a chain. Or a donor recipient pair, or what's called an incompatible pair, can start the chain,” says Jarvinen. “The care team matches each incompatible person with one or more other pairs to start a chain.”

If a good Samaritan comes forward and kicks off the chain, the team would use some of the other incompatible pairs by swapping some of the donor and recipients around, enabling them to sometimes perform a chain of three donor/three recipient pair surgeries (six total surgeries) in one day. Essentially, one altruistic living donor can begin a chain that potentially saves three lives.

Last year, MUSC received about 1,600 living donor referrals, with about 200 referrals arriving in January 2021. That doesn't mean that everyone makes it to surgery — that referral is the very first step of someone submitting a form and saying, 'I want to be a living donor.’ In total, MUSC performed 42 living donor surgeries last year; eleven life-changing chains were started. 

How to Become a Living Donor

The first step is to fill out the referral form, which includes a potential donor’s health history. As Jarvinen recommends, refer yourself.

“We always suggest not to rule yourself out,” she says. “You may think there's something in your medical history that could be a contraindication to donation but maybe it's not, so take that chance if that's something that you want to do. Fill out that form and let us decide if we are able to move forward.”

The ball is always in the court of the living donor. Even if they start the process, do the screening labs and come in for an evaluation, they can change their mind at any time.

MUSC has a full care team to support the donor through the process. Surgeons, Nephrologists, Nurse Coordinators, Program Assistants, Dietitians, Independent Living Donor Advocates, a Social Worker, a Navigator, and a Facilitator all work together to educate and help the donor.

“Our team provides education and support to our donors so that they can make the best decision for themselves, “Jarvinen says. “Donors are never pressured and can opt out at any point in the process right up until surgery.”

Living Donor care teams want to make sure that a donor can live their best life after donation, so the team won’t take anyone to surgery who wouldn't be able to live out the rest of their life healthily with one kidney.

To ensure that everyone’s best interest is in mind, there are separate donor and recipient care teams — there’s never a blurred boundary, no pressure to donate because a recipient desperately needs a transplant.

As part of the living donor care team, Jarvinen guides donors through the entire process. Once potential donors have been screened, which they can do in whatever town they’re in, she helps schedule the evaluation at MUSC.

“I review all of the financial assistance options available to the donor, like federal grants and our internal grant, and help them remove those barriers to coming to Charleston,” she says. A group of generous donors contribute to a fund within MUSC created to remove financial barriers for donors. This income-based grant helps to assist donors with expenses that are not covered by their recipient's insurance.

Jarvinen also meets donors on evaluation day, again in pre-op, and after surgery. Following that, she helps schedule post-op and wellness visits. Jarvinen’s guidance is comforting because it’s thorough, but also because she is a living donor, too. In 2017, she donated to a stranger as a Good Samaritan.

“I think that that's helpful too for our patients to have somebody that they can talk to who's been there, done that — not just in general but also at MUSC, because this was my care team also.”

As a living donor, Jarvinen wholeheartedly recommends the opportunity to donate life.

“If kidneys grew back and I could do this again, I would do this as many times as I could,” she says. “If you could donate again, I would do it in a heartbeat. It's the best thing I've ever done.”

Learn more about MUSC Health's Living Donor Program.

April is Donate Life Month, which honors those who have saved lives through the gift of donation and encourages everyone to register as organ, eye and tissue donors. For updates on what MUSC Health has planned to celebrate Donate Life Month, follow us on Instagram and Facebook.