× Estamos introduciendo nuevas características a CaringBridge. Las traducciones al español no están disponibles actualmente, pero esperamos poder agregarlos pronto. Gracias por su paciencia.

×

CaringBridge Is Funded by People Like You

Make a donation to CaringBridge

Honor Josh with a tax-deductible contribution to CaringBridge today.

Click here to make your donation.

Josh’s Story

Welcome to Josh's CaringBridge website. This is where we'll post the latest info about his diagnosis of primary sclerosing cholangitis (PSC) and cholangiocarcinoma. Josh is 38 years old, married to Jenny, and lives in Georgia.



In May 2010, Josh was diagnosed with Primary Sclerosing Cholangitis. PSC is a disease of the bile ducts. It can lead to liver damage and, eventually, liver failure. The doctor said Josh has a "severe case of PSC" and that he's probably had it for years.

PSC is not caused by alcohol. In fact, Josh has hardly touched alcohol his entire life. Doctors don't know what causes PSC, but they speculate that it is an autoimmune disease.

On July 6, 2010, one day after his 35th birthday, Josh was also diagnosed with cholangiocarcinoma, or bile duct cancer. This is a rare cancer (2 out of 100,000 people), but people with PSC have a 10 to 15% lifetime risk of developing the cancer.

He will be undergoing treatment at the Mayo Clinic in Jacksonville, FL. Liver transplant is the only known cure for both PSC and bile duct cancer.

UPDATE: Josh received a new liver on Feb. 24, 2011. The pathology report showed that all of the cancer was removed successfully!

Latest Journal Update

Three year update

Hard to believe it's been almost three years since Josh's transplant. February 24 will be three years exactly. We just got back from Mayo Clinic, where he had all the standard tests--bone scan, ultrasound, CT scan, blood work, etc.--and everything came back about as perfect as it could be. He didn't have to have a liver biopsy because his monthly labs have been stable for so long. They finally reduced his checkups to every six months instead of every four, so we won't have to go back to Jacksonville until August. They also changed his monthly lab work to every two months.

Now for the slightly bad news. At his checkup in October 2013, he had a colonoscopy and was diagnosed with "mild" unspecified colitis. He met with a GI doc on this visit, who said that Josh will be required to have yearly colonoscopies because he is at a higher risk for colon cancer. The GI doc also put him on Lialda to reduce inflammation. If I remember correctly, about 80% of people with PSC also have some form of colitis, usually ulcerative colitis. So it's not an atypical diagnosis, but it's still not something you want to hear.

Other than the colitis, Josh is about as healthy as you can get for someone who had PSC and cholangiocarcinoma just three short years ago!

In other news, we relocated to Augusta, GA, in May 2013, due to a new job opportunity for Josh. We bought a house in Evans, a suburb of Augusta, and we both really enjoy the location. I work from home, and Josh's job is only three miles away. The biggest negative is that our families are in the Charlotte area, so we don't get to see them as much as we used to. And having had several nieces and nephews born in the last year or two--and another one due in August--that's a pretty big negative! Charlotte is about three hours from Augusta, so it's not a long trip; we just have to plan things in advance. On the plus side, we're only four and a half hours from Jacksonville now.

Don't forget: If you aren't currently registered as an organ donor, please register today by visiting http://donatelife.net/register-now. And don't forget to tell your loved ones you want to be an organ donor.

Love,
Jenny and Josh