Courtney Kidd was just 19 when she learned she’d eventually die if she didn’t get a new liver.
The New York teen had been diagnosed five years earlier with Crohn’s disease, which causes inflammation in the digestive tract.
During a round of routine bloodwork, doctors noticed Kidd had elevated liver enzymes, proteins that help produce substances like bile to filter toxins out of the blood.
After an MRI scan, doctors diagnosed Kidd with primary sclerosing cholangitis (PSC), a progressive liver disease that causes scars to form inside the bile ducts, which makes them narrow.
Bile then builds up in the liver and causes progressive damage and eventual liver failure.
Kidd, now 38, told the Daily Mail: ‘I was still in bed, and the doctor came in and sat down on my bed and took my hand. And that’s never a great sign.
‘And I just remember her going, “I don’t want you to Google this, but you have something called PSC”.’
Kidd, a clinical social worker and professor at Stony Brook University on Long Island, followed her advice for some time before finally researching the condition and coming to terms with the inevitable reality: one day she would need a liver transplant.
Courtney Kidd, a 38-year-old clinical social worker and professor, was diagnosed with primary sclerosing cholangitis nearly two decades ago. Now she needs a liver transplant
She said: ‘It was terrifying, but I didn’t have a lot of choices. There’s no real medication for it. There’s no treatment for it.
‘And so I kind of decided, have to do things when you feel good, because I have no idea what’s going to happen with this.’
About 100 million Americans have some form of liver disease, and most don’t know it.
Fatty liver disease, the most common type, often develops silently, causing few or no symptoms at all.
But over time, the liver gradually becomes inflamed and eventually scarred, a condition called cirrhosis.
Cirrhosis is irreversible, meaning the only treatment is either a partial or full liver transplant.
It’s unclear exactly what causes primary sclerosing cholangitis, but it’s thought that immune reactions to toxins or infections, as well as conditions like inflammatory bowel disease, may raise the risk.
About nine in 10 PSC patients also have Crohn’s disease or ulcerative colitis, an inflammatory bowel disease that affects the lowest parts of the colon.
Kidd now is one of 9,000 Americans awaiting a liver transplant. This makes it the second most sought after organ behind kidneys.
While most organs come from deceased donors, more and more patients with liver disease are seeking live donors.
Living donors provide up to 70 percent of their liver to a recipient. Unlike other transplanted organs, the liver regenerates. In fact, it only takes about three months for both the donor and recipient livers to regrow to their full size and capacity.
‘The liver is an incredible organ,’ Kidd said. ‘A lot of people don’t realize you can donate part of your liver and be totally fine without any change to their lifestyle.’
Most living liver donors are close family members or friends, but everyone in Kidd’s inner circle has not been a match.
Living donors need to be the same blood type as the recipient or type O negative, the universal donor blood type. They also need to be free of any form of liver disease, be under 50 and have a relatively healthy lifestyle.
Kidd, pictured second from the right, once traveled the world and lived abroad. Her condition has now progressed and forced her to stay stateside
Kidd is pictured above with her family. Family and friends have been tested, but none have been a match to donate to her yet
Kidd spent nearly a decade ‘fairly asymptomatic’ after her diagnosis, allowing her to travel to 12 countries, including living in Scotland for three years before moving back home to New York.
This is because PSC progresses slowly and is usually diagnosed via routine blood test or x-ray before symptoms like fatigue, yellow eyes, itching and abdominal pain set in.
In later stages, it can cause fever, chills, night sweats, weight loss and an enlarged liver and spleen.
Kidd told this website: ‘The only symptom I really had was that my lab work was getting worse, the liver enzymes were getting worse.’
When she finally did develop minor symptoms in her late 20s, they started with what she calls ‘the itch.’
The liver normally processes and excretes bile acids, but as it failures, those acids build up in the bloodstream and skin, causing an unbearable itch.
Kidd said: ‘I knew at that point I had kind of crossed over the mark of being symptom free to symptomatic.’
Her condition deteriorated in her 30s, forcing her to cut down on travel and be placed on the transplant list for a new partial liver.
A patient’s need for a new liver is measured by a Model for End-Stage Liver Disease (MELD) score, which ranges from six to 40. A higher score indicates a greater risk of death within three months or a more urgent need for a liver.
Patients with high MELD scores are prioritized for getting an entire liver from a deceased donor, which means patients like Kidd have to rely on living donors. Kidd’s MELD score is around 10 to 12.
She told this website: ‘My MELD score has, fortunately and, yet, unfortunately, remained very low, so I have no hope of a deceased donor call coming in. I will not get a call at this point saying, “Hey, we’ve got a liver for you. Come in for surgery.”‘
‘So my only viable option without getting really sick is a living donor.’
But in later stages, conditions like PSC can progress rapidly while Kidd waits for a donor, leaving her with less time to get a new liver than her MELD score may suggest.
Kidd said if she gets a transplant, she will take her mother (pictured here with Kidd) to Ireland
As Kidd awaits a transplant, her treatment plan ‘is to try to stay out of the hospital as much as possible.’
‘I fail pretty drastically at that,’ she added. ‘I’ve landed myself there twice this summer alone.’
PSC can put pressure on the portal vein, a blood vessel that carries blood from the gastrointestinal tract, gallbladder, pancreas and spleen to the liver. This causes blood vessels in the esophagus and stomach to enlarge and become prone to rupture and bleeding, which requires urgent attention.
Liver disease has also weakened Kidd’s immune system, landing her in the hospital with infections several times a year.
Despite this, she has maintained her private therapy practice, though she has had to cope with less freedom.
She told this website: ‘I try to live as normally as possible. I had to stop a lot of the things I love. I used to be a huge traveler. I would kind of just drop the hat and go to Europe for a weekend and see my friends.
‘I would fly back and forth, I would go see friends, I would travel. I would do a lot of things, even making plans, seeing shows. It’s always with the kind of asterisk now of if I can. So I’m homebound a lot more, more New York-based.’
Kidd’s donor would need to have either type A or O blood and be able to locate to the Long Island, New York, area for surgery.
Testing prior to surgery can be done remotely, and Kidd’s insurance covers all costs for the donor’s treatment.
Those who are interested in getting tested can visit Kidd’s website for more information.
If Kidd gets the call that there’s a donor ready for her, she’s most looking forward to hopping on a plane again and jetsetting around Europe. For her first trip with a new liver, she plans to take her mother to Ireland.
She also hopes to start a national liver donation registry to help other patients get matched with a donor more quickly.
Kidd told this website: ‘I’d really like to get back to my life.’
