Independent Living Donor Advocate, Penn Medicine Transplant Institute

Vanessa Worzel

“I’m an Independent Living Donor Advocate. Some people call me ‘ILDA’ for short, which sounds like the name of a fairy godmother when you say it out loud.”

I’m the only person at Penn Medicine in this position. My sole job is to act as an advocate for our living kidney, liver, and uterus donors. I look after their interests and protect their rights before, during and after donation. It’s important they have all the information they need, and they understand the risks and process, before they make this important decision. Federal regulation requires transplant programs to have an ILDA, that’s how important our donors are!

Being a living organ donor is a pretty rigorous – and emotional – process with a lot of steps and tests. Donors need to understand what’s involved, and I have to be assured that they’re donating for the right reasons. In fact, that’s always one of my first questions: ‘Why do you want to do this?’ Almost always, the answer is that they want to save a life, it’s pretty amazing.

At Penn, we’ve done thousands of living donor transplants helping patients get to transplant sooner, healthier. The wait list for an organ can be long, sometimes years. Living donation is a great way to lessen someone’s wait time.

There’s no physical benefit to donating an organ, so this is something donors do purely out of compassion. Amazingly, 20 to 40 percent of our living donors are altruistic donors, meaning there is no intended recipient. They just want to donate and help someone. It’s totally selfless. As one donor said to me, “This is someone’s life, you gain so much more than you lose.” It is one of the ultimate gifts you can give, the gift of life.

Sometimes this job takes an emotional toll on me. One of the toughest parts of the job is having to tell someone they can’t donate – usually because of a medical reason. You have to be very healthy to be a living donor. When someone is declined as a living donor, I try to help them figure out other ways they can help. They can be an organ donation advocate, start a Facebook group or even just put a bumper sticker on their car. You’d be amazed how many people see a bumper sticker and call the number.

I hear a lot of very hopeful stories. Like the young woman who donated to help the father of a high school acquaintance because she happened to see their post on Facebook. This donor had forever been changed by the impact of cancer on her family and knew this was a way she could make a difference in the life of someone struggling with their own disease. So many incredible stories – donors to strangers, to lifelong friends, spouses, siblings, a child to a parent, a parent to their child. As one parent said to me “I gave them life and want to give them life again.”

“It is a privilege to work with our living donors, to share their life-changing moment, their desire to help a person they love or a person they don’t even know. To be a part of someone’s kindness and selflessness…it’s rewarding beyond words.”

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