She didn’t know the baby’s family. But when Christina Miller heard that a baby desperately needed a liver in order to live, the call went straight to her heart. So Christina became a living liver donor.
Fewer than 7,000 people a year agree to be living donors, and almost all are donating to close family or friends. Even though the transplant saved the baby’s life, Christina doesn’t see herself as a hero.
Growing up in Elkton, Virginia, Christina’s family valued spirituality. “Compassion for others was always modeled for me,” she explains. “My mom very much had a servant’s heart. And so I think maybe some of that translated.”
What’s It Like to Be a Living Donor?
The experience gave her a depth of meaning she can’t quite explain.
“As a living donor, you’re in a really unique position to come alongside the recipient and say, I’m going to bear this with you. And it’s just really special to play a role in bringing renewed life to somebody. It’s kind of hard to put into words, really.”
Not all of us are willing to become a living organ donor to someone we know, let alone a stranger. A living donor liver transplant involves a major operation and weeks of recovery.
Christina regrets nothing. “If living liver donation is on someone’s heart, I would just say to follow that pull and see where it goes. Because it’s just a really special experience.”
Saving Josie’s Life With a Living Donation
Josie Curvin has a new chance at life thanks to Christina’s living donation. One of Christina’s first questions after surgery was “How’s Josie?” Thanks to the transplant, Josie’s condition improved immediately. See Josie and Christina’s transplant story at UVA Health.
KELLY CURVIN: Hi, I’m Kelly Curvin. I’m 38. Born and raised in Chesapeake, Virginia. Josie is one of five. She’s the youngest and the only girl. I have four boys before her. We were outside and I noticed that the whites of her eyes looked just ever so yellow. We came to CHKD. They did an ultrasound and more labs, and they essentially told me that she was in liver failure.
FRANK DiPAOLA, MD: Josie came to us at UVA as a transfer from CHKD. So Josie was diagnosed with biliary atresia, which is a disease of the bile ducts of the liver. The primary treatment is a surgical therapy we call Kasai. Unfortunately, Josie was fairly sick by the time she came to us, so it became apparent fairly early on that she would need a transplant.
ANITA SITES, AG-ACNP: There’s close to 20,000 people waiting for liver transplant in the United States, and there are just not enough deceased donor organs to supply all those people in need.
NICOLAS GOLDARACENA, MD: In a living donor, a patient who is alive and healthy donates a portion of their liver to someone in need. That’s why we are making a huge effort to grow this living donor program at UVA.
CHRISTINA MILLER: On Facebook, a friend of mine had shared a post about a baby who needed a liver transplant.
KELLY CURVIN: She messaged me and said that God had put it on her heart that she wanted to be Josie’s living donor.
CHRISTINA MILLER: She was, of course, very receptive to it, I think, as any mother would be who’s fighting for their child in a situation like that. So she was very welcoming to me.
KELLY CURVIN: When she was in surgery and we had to wait so long for 10 hours, I felt helpless. I wish that it could have been me instead of her.
CHRISTINA MILLER: I do remember one of my first questions when I got up to the room after the surgery is, “How’s Josie?” And I remember them telling me that, you know, it was almost immediate. Like after the liver went in, like, her color came back to her body. It was just a deep sigh of relief to know that everything went okay for her.
CHRISTINA MILLER: Like how it was planned.
KELLY CURVIN: We spent her her first birthday at the hospital, and that was amazing. The whole transplant team bought gifts and wrapped them. We sang Happy Birthday. They started out as, you know, just doctors and nurses, but we’ve spent a lot of time together. So, yeah, they’re like family.
FRANK DiPAOLA, MD: If you look at centers across the country, living donor is about 10% of the total volume of pediatric liver transplant. We’re going to do half of our transplants this year as living donor transplants. That allows us to get kids to transplant sooner.
ANITA SITES, AG-ACNP: Without donors, whether they be deceased or living donors, we wouldn’t be able to transplant people. So donors are, of course, the heroes of transplant no matter how you look at it. But living donors are especially special, and I’m very biased, but I do think that they’re the most special patient population you could ever take care of because they are giving of themselves in the most ultimate way.
ANITA SITES, AG-ACNP: It’s a major abdominal surgery that that person doesn’t need.
KELLY CURVIN: Her prognosis is great. She’s thriving. A year ago, she weighed fourteen pounds and couldn’t set up on her own. And now she’s about to start walking and she’s close to thirty pounds.
CHRISTINA MILLER: It actually happened to be on my birthday a few weeks ago that Kelly sent this video of Josie taking her first steps. It was just it was just really special to be able to witness that.
ANITA SITES, AG-ACNP: Christina does not like to have a lot of attention placed on her, so she’s just another one of my really special patients who helped this precious little baby have a new chance at life.
How to Be a Living Liver Donor: 11 Things to Expect
Before agreeing to the procedure, Christina did a lot of research. She talked to people who had also been living donors. She learned everything she could about the risks.
“It just put me at ease to be like, okay, these people made it through and to kind of hear their experiences,” she says.
Now that she knows what the process is like, we asked Christina what advice she has for people considering living liver donation. She shared these 11 things to expect and do.
Understand the Risks
“When you familiarize yourself with the risks of any surgery, it’s a good thing. You want to know what you’re getting into and educate yourself,” Christina advises.
Knowing what to expect gave Christina a sense of trust and confidence.
She adds, “There’s a possibility for something to happen, you know, that you wouldn’t want. But that’s just part of the risk-benefit analysis.”
Christina also appreciates the staff at UVA Health. “They told me exactly what to expect. They were really straightforward and honest. And so I feel like I knew what I was getting into. Basically, the surgery and the recovery went exactly as they had expected. So I feel they did a really good job prepping me for that.”
Prep Your Family. Gently.
When Christina first broached the idea of becoming a liver donor to her husband, he had concerns. Christina stays at home with their two little kids, ages 6 and 2. Going into surgery and through recovery would impact the whole family.
“He was like, you have small kids, and you know, you have us,” she remembers.
But she gave him time.
“He was so supportive of it, but it did take a little bit of time for him to get there,” she says. Only later did she learn that the day of the operation was, for him, the most stressful day of his life.
As for talking to her children, she started with her son. Christina was “pretty straightforward about why I wanted to do it and what the process was like, and I think as much as a 6-year-old could grasp it, he did.”
The toddler was harder to manage. “For the first 6 weeks after, you’re not supposed to lift anything over 10 pounds,” she says. But her daughter wanted to be picked up. “That was a little bit difficult to navigate, but she got it after a little while.”
Thankfully, Christina’s sisters live close to Charlottesville and the University Hospital where the liver donation took place. “They were a huge support to me,” she says. They gave her a place to stay.
Clearly, building family support and buy-in prior to the operation was key to making the experience as easy as possible.
You’ll Need to Clear Your Calendar
Unlike other forms of donation, like giving blood, donating a liver requires a lot of time.
For Christina, this amounted to:
- 1 day of screening
- 3 nights in the hospital
- 6 hours in surgery
- 11 to 12 weeks of recovery
Yes, You Will Have a Scar
And it’s not a small one.
“It’s a 6-inch scar,” Christina says.
Say Goodbye to Your Gallbladder. And Fatty Foods.
When they remove part of your liver for a living donation, surgeons also take out your gallbladder.
“In the beginning, that was one of my biggest fears,” Christina says.
She doesn’t know why it stuck with her. It does mean she’s not supposed to eat high-fat foods. For Christina, who tends to eat healthy, she watches what she eats so it isn’t a big deal.
But she notes, if that IS a big deal for you, you’d want to take that into consideration.
Make Sure to Bring a Pillow
During recovery, doing anything with your abdominal muscles, like laughing or standing, will be uncomfortable. Before the operation, one advisor told Christina to “always carry a pillow with you, for when you cough and that type of thing. And she was right. So I took that to heart.”
You Have to Put Down the Beer — For a Year
“Even if you drink some you can still donate,” Christina says. “But they said not to drink alcohol for a year after you donate.”
Save a Life
Interested in becoming a living liver donor?
You’ll Go Through Testing (a Lot of Testing)
If you sign up to be a liver donor, you will go through a lot of tests.
First, you get tested to see that you qualify to donate part of your liver. Your blood type must match the recipient’s, you need a BMI in a normal range, and you need to be fit enough to undergo the operation.
Pre-Operation Prep
To make sure you’re in good shape for the procedure, you’ll have a lot of tests done.
In Christina’s words: “The living donor coordinator did a really good job at scheduling everything to be on the same day. It made it more convenient. There were blood draws, an EKG, a chest X-ray, a CT scan, an MRI. It’s a lot in one day. But it’s kind of nice, because you just knock it all down at once.”
Meeting With the Team
You also meet with everyone on the living donor team, which can include:
- Social workers
- Psychologists
- Surgeons
The social workers ask questions to make sure you’re not being forced to donate your organ or getting compensated in any way. The surgeons make sure you understand the operation and recovery process. And the psychologists make sure you’re confident in your choice.
You (Probably) Don’t Have to Pay Anything
The recipient’s insurance took care of the health costs for Christina. It’s normal for all of your hospital costs to be covered.
Your Digestive System Gets Disturbed (Briefly)
Removing your gallbladder and part of your liver disrupts your digestive system. This happened for Christina in two distinct ways.
At first, she could only “eat a really small amount. I would just feel really full. I wasn’t really expecting that.”
More awkwardly, Christina’s team at UVA Health “were really trying to track my GI movements. And so I felt a lot of pressure to perform, and it wasn’t happening for a little while. So that was a little awkward.”
Your Liver Grows Back
It’s one of the coolest things about the liver. It regenerates.
“At the 3-month mark, they did an MRI just to see what it looked like. And it was really cool to see it had grown back,” Christina says. “And to just see, it was a little bit different shape, you know, than it was before.”
Should You Become a Living Liver Donor?
There are thousands of people waiting for a liver transplant. While it’s great to register as an organ donor, living donors help people who are waiting right now. As a result, they get to have the unique experience of getting to see their gift treasured.
Christina acknowledges that “not everyone’s in a position to be a donor. Definitely not everyone wants to have an organ cut out or something. But, you know, we all have our own stories.”
Christina was able to become a living liver donor because she had the time, the support, and the resources. And, if she could, she’d do it all over again: “Absolutely, yes. Again and again.”
At the end of our conversation, she asks us the final question. “If you see a need, and you have something that you can do to help that person, then why wouldn’t you step forward and do that?”
If you’re ready to step up but aren’t able to donate part of your liver, you could donate blood or bone marrow instead. Check for local blood drives near you or register for Bethematch.com.