update 7/4

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happy 4th of july.

this past wednesday, we got a call from dr. russo, the carolinas medical center liver specialist, who said that josh’s liver is most definitely damaged. to what extent, no one knows because he hasn’t had a biopsy yet. i’m not sure why the doctors haven’t ordered one. dr. russo also said the brushings from josh’s latest ERCP were sent to mayo clinic for a second opinion. the pathologists at CMC felt that they were abnormal and so they sent them to mayo because mayo is where the PSC experts are. abnormal cells could mean one of three things: inflammation from the ERCP, pre-cancerous cells, or cancer. this type of cancer, cholangiocarcinoma or CCA, is rare (2 people out of 100,000), but it is not as rare among PSC patients, who have a 10 to 15% lifetime risk of developing the cancer.

dr. deal, the gastroenterologist, did a lot of work during both ERCPs, dilating as much as he could of the common bile duct. so it’s not unreasonable to assume that everything is inflamed from the trauma of the procedure. but josh is still jaundiced, itching, not hungry, and extremely tired. at this point, over a week after the ERCP, some of those symptoms should be easing up if the duct is staying open.

tomorrow is josh’s 35th birthday. hearing the big “C” from dr. russo is terrifying. 35 and cancer? it shouldn’t even be possible. so i’m praying with everything in me that it’s just inflammation. CCA statistics from cholangiocarcinoma.org:

The five-year relative survival rate (the percentage of patients who survive at least five years after the cancer is detected, excluding those who die from other diseases) for people diagnosed with early-stage cholangiocarcinoma is about 30%. However, only about 20% of cholangiocarcinoma is found at an early stage. The five-year relative survival rate decreases if cancer has spread at the time of diagnosis.

the PSC alone is bad enough. at some point josh will have to undergo a liver transplant. it’s major surgery that has continuing lifetime risks. and some people with PSC who undergo transplants actually have their PSC come back.

transplant statistics from mayo clinic:

Your chances of a successful liver transplant and long-term survival depend on your particular situation. In general, about 72 percent of people who undergo liver transplant live for at least five years. That means that for every 100 people who receive a liver transplant for any reason, about 72 will live for five years and 28 will die within five years.

People who receive a liver from a living donor have higher survival rates because having a living donor usually means a shorter wait for a liver. For liver transplants using living donors, the five-year survival rate is about 78 percent. That means that for every 100 people who receive a liver transplant using a living donor, 78 will live for five years and 22 will die within five years.

please keep josh in your prayers.

Categories: PSC

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