I’ve got an appointment with my GI early next month, and I’m planning to bring up the subject of biliary resection.
A little history: I was diagnosed via ERCP in 2001 after ten years of elevated liver enzymes on blood tests. My first symptoms cropped up in 2011, and have been gradually worsening since then. In late 2015 I was hospitalized with ascending cholangitis and had an ERCP to dilate my ducts, which revealed a dominant stricture around the junction of the left and right hepatic ducts, and they were unable to dilate one of the ducts because of scarring. I’ve had ongoing RUQ pain since even before the ascending cholangitis, so my doctor referred me for a changioscopy. That was scheduled last August, but they were unable to get the scope into the ducts at all so they dilated what they could via ERCP. Again, the same duct was unable to be dilated because of scarring.
At this point I don’t know for sure, but I doubt I’ve got cirrhosis given my relatively good lab numbers and my overall fairly mild symptoms. Given that, and the fact that I have a dominant stricture outside of my liver, I’m wondering if I’m a candidate for biliary resection, which would (hopefully) reduce my risk for cholangiocarcinoma and improve my symptoms, putting off the eventual need for a transplant.
Has anybody here had a biliary resection before having a transplant? How well did it work? Does anyone know if it complicates a later transplant?
Dave,
Hello. Sorry that they were unable to get that duct opened after several attempts. I also had my left hepatic duct do the same thing one time and they were unable to open it up. We waited about a month and then he went in again and worked and worked and finally got through. So sorry they have not been able to do that in your case. One big concerning thing though is that with that duct being sealed shut you are not getting any bile flow out of that one duct, thus you are most likely getting some pretty good damage occurring to your liver. You mentioned a GI in your post. Are you not seeing a hepatologist for your PSC care? If not, I would certainly recommend you getting an appointment with one. Most GI doctors are just not qualified to treat liver disease unless they have had the special training that is needed to do so, and then with PSC it complicates it even more. Your doctor may be a hepatologist but I just wanted to be sure. I’m thinking that if you have not had a liver biopsy lately that you probably need to have one. I would certainly inquire. PSC can change rapidly. My MELD stayed pretty stable at a 12 for several years then in April of 2015 it went to a MELD of 19 and then in July of that same year jumped to a 35. My point is that things can change quickly. I certainly hope that you can get an accurate picture of just what is going on at this point in your PSC journey. Keep us informed. You will certainly be in my thoughts and prayers.
Try an ERCP performed by a different doctor. I know a few local patients with histories of unsuccessful ERCPs who were successfully unclogged by taking a trip to Mayo Rochester.
I mainly see a gastroenterologist. I’m in Albuquerque, NM, USA, and there are no hepatologists in New Mexico. The closest are in Denver, a 7 hour drive away. I see a hepatologist in Dallas once a year (it’s marginally farther but I have family there), usually flying out early in the morning and returning late the same night. Trying to schedule a procedure there would involve months of wrangling with my insurance company, although I can do that if necessary. Trying to schedule the cholangioscopy was an eleven month saga, and that was local but out of network.
The dilation failures have been with two different doctors. The second one was frustrating - through an amazing set of failures on the part of the scheduling people and the gastro group, the doctor who did the procedure hadn’t read my initial referral not any of the previous notes from my regular GI, so he went in expecting a straightforward ERCP and instead found himself facing my ratty, scared ducts. The procedure was held up by six months because of their scheduling department’s mistakes, and I have to wonder if the outcome would have been better if they’d done it sooner and if the endoscopist had known in advance that he was dealing with a difficult case.
On the recent ERCP, they did say that the contrast fluid was draining OK despite the scaring in the duct they couldn’t dilate. My obstruction symptoms are usually not too severe - some fatigue but not the debilitating level I’ve had when I’ve had major blockages, and itching that’s fairly well controlled with Rifampin and Questran. So that’s good news at least.
Which brings me back to my thoughts about biliary resection. It’s probably a discussion I’ll eventually have to have with my hepatologist, whom I’m due to see next spring, but I need to start laying the groundwork note if I want anything to happen before 2018.