Last time you went to the DMV, do you remember if you checked the organ donation box? For some, it’s no question, and for others it’s a no way.
Did you know you can actually be a living organ donor in some cases? That’s what has saved the lives of three members of the Harbin family. Their story is rare, incredible and inspiring.
Justine Harbin is the mom of four beautiful kids. Lilly just turned 12, Kennedy is 10, Roman is seven, and Mia is five.
The young family has quite an amazing story to tell, and it all starts when Justine was 11. She had to get a routine physical for daycare, but little did the family know, a whirlwind of change was about to blow in to their lives.
“It was just overwhelming, getting hit with so much,” said Justine’s mom, Christine Carroll as she recalled everything unfolding.
Doctors found that Justine had enlarged kidneys which were functioning at only 30 percent, high blood pressure, and a hole in heart. Justine and her mom were sent to Morgantown for further care. In all, it took about a year to figure out what was going on. She was ultimately diagnosed with Polycystic Kidney Disease.
Soon after, Justine’s kidneys failed and she started dialysis immediately. Some days, Christine recalls her daughter was like a “wrung out washcloth,” drained of energy. She remembers carrying her out of the hospital after dialysis, a procedure that went on for a couple of years before Christine was declared a match and was able to be Justine’s living donor.
Christine had to go through rounds of tests to make sure she was healthy and ready for the procedure.
A single parent to Justine and her two brothers, Christine said there was a lot of fear at the time. There were so many changes to her life, Justine’s and two other sons- the whole family making sacrifices.
“I kind of remember the doctor was asking me, they said, ‘You can back out at any time if you want, if you’re afraid.’ I said, ‘No, the only thing that bothers me is that I am not going to know if her kidney would take,'” Christine said.
At the time, a new, less invasive type of surgery was coming out and Christine was given the option to undergo that procedure instead of a longer one that would leave a scar. “And I said ‘Listen, I only have one kidney to give, okay, so we’re going to go through this the old-fashioned way,’ I said, ‘I’m sorry, but I am too scared, what if something goes wrong? I can’t give another one,'” she told the doctor.
Luckily Christine’s kidney was successfully transplanted to Justine, who has now lived with it for 17 years, beating the average of 12 to 15 for living donors. This means she has to start dialysis again when her transplanted kidney fails, until she gets the call from the donation list that a new one is ready. Justine said that process can take anywhere from four to five years for adults.
When she was thinking about having children, doctors told Justine the disease was recessive, and that there was a very small chance she would pass it along to any of them.
When Justine was pregnant with her first daughter, Lilly, doctors found some cysts on her kidneys, but told her not to be alarmed because this was relatively common in pregnancies. However, when Lilly was just a few months old, the cysts started becoming more numerous, she also had high blood pressure.
By the time these new developments came about with Lilly, Justine was already pregnant with her second daughter, Kennedy. The second pregnancy went smoothly and there were no signs of any cysts until Kennedy was about a year old.
A few years later, Justine had a third child, a son named Roman, who was healthy. Her fourth child, Mia, was also diagnosed with Polycystic Kidney Disease.
Lilly went into kidney failure when she was eight-years-old. Her father was not a match, therefore not able to donate, so Justine created a Facebook page to get the word out that Lilly needed a donor. The page eventually led them to a match, a woman from New York.
In November 2014, just nine-years-old, Lilly received her transplanted kidney. She said when she found out there was a match for her, she was excited. She spent 11 months on the waiting list and had to go to dialysis until she had surgery. She missed Monday and Thursday at school, and got a lot of headaches at the time of her treatment. She said sometimes it was hard to catch up with all of her school work being so sick.
The surgery lasted about six hours, and Lilly spent 11 days in the hospital recovering. Today, she is a relatively healthy 12-year-old girl, but she does have to take medications to keep her transplanted kidney healthy and working.
Her 10-year-old sister Kennedy hasn’t been matched with a kidney yet, despite being on the transplant list for a few months. Until then, Kennedy goes to Pittsburgh’s Children’s Hospital every Monday, Wednesday and Friday for dialysis. It takes about an hour to get there, a half hour to hook her up to the machine, three hours for dialysis, a half hour to take her off the machine, and then about an hour to get home.
For dialysis, Kennedy has a catheter in her chest that goes to her heart, with two holes. One pulls the blood out, taking it to the machine to pull out and filter the excess waste from her blood, then returning it through the other end.
Justine said Kennedy has had a few side effects including headaches and nausea, but they have found a way to keep those symptoms at bay. Kennedy is a student at Weir Middle School and said her teachers do a good job of working with her to make sure she is up-to-date.
Mia received a transplant from her father in June. In her short life, she had not gone into kidney failure, but she did suffer from many complications. She had a very enlarged stomach and high blood pressure. Now, Mia is active and enjoying life. She takes dance lessons and she loves to run around.
Between trips to Pittsburgh three days a week, going to the hospital for her own IV infusion every Tuesday, and keeping up with family life, Justine said life can be very stressful. “I manage, I wish things would settle down a bit. Or at least that just one of us would be sick at a time. That would be much easier,” she said.
However, she said she is thankful that she has the same disease as her daughters, because she knows what they are going through. “I am also thankful that we’re all together in it. Like I know what she’s going through, her sisters know what she is going through. She fits in,” she said with a smile.
Doctors have since decided Justine’s disease is dominant, even though all of the genetic tests for it came back negative. They think it could be a new mutation. Justine and the girls are a part of some experimental genetic research studies, but nothing has come back from them yet.
Rightfully so, the whole family advocates about the importance of organ donation. “I think it’s important that people know you can give a kidney and be alive,” Justine said. “A lot of times I will talk to people about organ donation and they say ‘Yeah, I am an organ donor,’ but unfortunately sometimes you’re registered to be an organ donor and you have to die in a really specific way to actually be able to donate. But you could live a healthy life with one kidney. My mom does, Lilly’s donor does, Mia’s dad does, and I mean, they all saved lives.”
“When I was in kidney failure, it was hard to take all the medications and follow all the diets and go to dialysis. I mean, you’re just changing a kid or adult’s life when you are donating an organ,” Lilly said when asked about why it is important to donate life.
A living donor, Christine said she had no problem with her recuperation after her surgery, and today the process is shorter and easier than the one she had to go through. She said she would donate again if doctors would let her. “You know to donate life, you have no idea what you’re giving. You have no idea,” she said. She calls organ donation “the best gift that you can give.”
Justine said it’s hard that she can’t help her kids the way that her mom helped her. “I wouldn’t be here today if my mom didn’t do that… more people wouldn’t be here today. And I’ve lived a good life with this kidney for 17 years, I’ve done a lot with it,” she said.
As it stands, kidneys donated from a living donor can last 12 to 15 years, and kidneys from deceased donors last five to seven years.
Today, Justine is ready to start her second round of dialysis, while Kennedy also has dialysis. Both are waiting for the day they get the call that someone is a match.
To learn more about organ donation or to register to become a donor, visit the CORE website. If you want to see if you could be a match for the Harbin family, please visit the UPMC Transplant Services website.