Greetings to all,
I am a 30-year-old male patient who is born and raised in Hong Kong. I wish to share my journey to you all and I’m needing all of your support and advice in this matter.
I was first presented with abdominal pain when I was 28 years old during which I was taking my postgraduate exam. I first thought it was stress but through ultrasound and scans it was discovered that I had some bile stones. I had gone through 2 ERCP at that time to had it removed.
One month later, my liver enzymes were still high and my doctor suggested me to take a PET scan. It was revealed that I had a tumor in me. Hepatectomy (Resection of Liver) was done for the Left hepatic duct and the pathology report shown that it was of a cholangiocarcinoma (with EBV related cell tumor)
I had adjuvant chemotherapy for about a few months. At that time, I still had no idea what kind of a condition I’m in but I still get my blood checked frequently although the enzymes had never returned to normal. Doctor did prescribe UDCA for me. After about a year, in September of 2019, I had another epigastric pain and biliary sepsis. The MRCP showed that there was a stricture on a Common Bile Duct hence a stent was placed thr another ERCP.
For a long time I suspected that I had PSC so I asked my doctor to do a pathological examination on my liver which had been resected. However, PSC could not be confirmed. At that time, I already suspected I am having PSC and reading various topics here I urged my doctor to let me try vancomycin. My doctor was reluctant, but I had the benefit of trying it for two weeks before him fearing it will pose a resistance on me and pull it off.
Fast forward to 2020, I again experienced some pain in my right abdomen. I had another MRI and MCRP which showed that there are multiple short segments of structures within the biliary tree including the right posterior duct and right intrahepatic ducts. These strictures are new and God it has only been half a year.
I am extremely worried because doctors informed me that its impossible to place a stent inside the biliary tree despite one had already been in place at the common bile duct. It has only been half a year… I understand that PSC is a progressive disease, but I had no idea that PSC could worsen in such a rapid manner. I guess one good thing is that it sorts of confirm my diagnosis as PSC?
Now I get this funny feeling in my right abdomen. It’s not exactly painful but you feel like something is in you and obstructing you. Occasionally you feel like it is getting hardened when I take a deep breathe.
I am seeing a liver transplant team next week but I know it will take a long time to find a suitable replacement. I simply don’t know what to do now and I am really scared. Even more so when I was told that I have cancer. I hope anyone here could shed some light if they have experienced the same or just some general advice on how to deal with this, particularly the small ducts strictures.
Here is my current liver enzymes, if it helps:
ALT 150; ALP 272; Bili 45; GGT 281; AST 162
My cholesterol is also very high at around 8.7
Thank you everyone. your responses will mean so much to me.