My son’s story

My 28 year old son started having problems with jaundice in Sept of 2015. He went to the ER and after blood work (elevated liver enzymes) they did a MRCP and found a cyst in his bile duct. They did a stint and referred us to a GI surgeon who had experience with transplants. In Nov he had a cholecystectomy. They also took out his gallbladder. He had follow up MRI’s every 6 months. They showed normal until the 3rd one, last July, which showed bile duct scarring and liver damage. He was referred to Vanderbilt to see a hep dr who said he thought it might be PSC. With no insurance, the dr said it wouldn’t hurt to wait 6 months for him to get it. He mostly said get insurance, maybe 2 because eventually you WILL need a transplant or you will die. Fast forward to last Wed when he saw him again and had blood work and a Doppler ultrasound. The ultrasound showed an enlarged spleen and impaired blood flow in the hepatic arteries as well as the liver damage and bile duct scarring. The blood work showed elevated his liver enzymes elevated at:
ALP 1179
AST 93
ALT 110

His bilirubin is only at 1.3
I calculated his MELD and it is only 8. He had a positive ANA, which dr said could or couldn’t be AIH. Dr was concerned about the blood flow issue and subsequent liver damage so he ordered a CT angiogram and he is having that done next Sunday. The dr wanted it done within 2 weeks. He said he definitely needs to get a colonoscopy done ASAP.

He doesn’t have many symptoms. He has trouble sleeping, fatigue, and slight jaundice. Although he has never officially diagnosed, I believe he is on the autism spectrum. He mostly has social issues. I have to be there to talk to the dr because he doesn’t understand and can’t remember what the dr says. He has a difficult time speaking up when he has questions or doesn’t understand something. He still lives at home, which now is a good thing. He is having a difficult time coping with the uncertainty. I am going to try to get him to go to counseling. This whole thing is quite daunting for anyone to deal with, including caregivers.


He weighed 252 when everything started in 2015 and within 6 months weighed 185.

Hi Tnangel,
Thank you for sharing your sons story. From everything you have stated, it sounds like a classic case of PSC. I would ask them to do an MRCP with and without contrast and then if they show any strictures possible in the bile ducts, to do an ERCP. One thing I cannot stress enough to you though regarding the ERCP is that under no circumstances do I recommend you using your local GI doctor to do this. Make sure you go through a transplant center and make sure the doctor that does the procedure is a specialist in advanced endoscopy. This will lower the chances of pancreatitis and a hospitalization, etc. This is a very invasive BUT necessary procedure for patients with large-duct PSC. I had 3 or 4 of these done over a 4 year period.
Please be assured that we are here for you, do not hesitate to reach out and we will do our best to help. Sorry for the delay in you getting a response. Jeff the other moderator must have been out of town or other business and I was in Washington DC this week advocating before several members of Congress at a special Liver Day on Capitol Hill asking for more funding for research for the fight against liver disease and living donor protections. Take care.

PSC 2011 / Liver Transplant 2015


He had a CT angiogram and it showed an enlarged liver with asymmetric enlargement of central liver and enlarged spleen, enlarged periportal and peripancreatic lymph nodes and a large cluster of enlarged lymph nodes anterior to pancreas, prominent vascularity of pancreatic head, dilation of common bile duct, some focal Billary ductal dilation, narrowing of celiac artery with poststenoic dilation. Still waiting for hep dr at Vanderbilt to call with explanation and next steps. Thanks for replying.

tnangel…That sounds so rough for you both. I’m very sorry! I have probably never even thought of the difficulties that someone might face with trying to deal with something like this with communication issues of that kind. My Mom had a kidney transplant and was very challenged with her hearing. Her hearing deteriorated as she aged and began to be sicker. She really had a hard time with new doctors and with building a basic communicating relationship. Often, a misunderstood word or a comment taken out of context could send her in a bad direction emotionally. Fortunately, her nephrologist and transplant surgeon practiced for the entire 30 years that she had her kidney. They could always be counted on to help smooth out the bumps . I hope that you and your son will be able to build those relationships with your medical team wherever his health goes. He is lucky to have you! Doug