Provisional dx of PSC 10 years ago, first ERCP a few days ago

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Hi all,

I had my first ERCP this past Friday. Up to last week, I hadn’t had any PSC symptoms other than the occasional fatigue. A week ago, my LFTs spiked (ALP around 1200, total bilirubin got up to around 6, whereas it had always been normal in the past). My GI doc ordered an MRCP. I’d had three MRCPs over the decade, and I always a little doubtful about whether I had PSC since the MRIs looked fairly normal. Or, at least I had my doubts, but my doctors didn’t. Anyhow, this week’s MRCP showed a stricture in the common bile duct.

I’d been hoping for an alternate diagnosis for a while, and can tell you all about that later, but anyhow, back to reality… My GI doc told me to go up to Charlotte as soon as possible to get a stent put in. My wife and I were freaking out and wondering if this was a bit too much too soon. I was turning yellow for the first time and getting the itches, so I made a mad stressful 4pm dash over to the doc in a box to get a rapid the COVID test (negative), and called and faxed over to the hospital to confirm that the ERCP could proceed at 8am the next morning.

Thursday, the night before… Around 8pm, I called some family members who gave me some crucial advice: call my GI doc after hours and have him explain what’s going on. I’m not the most assertive person, so calling my doctor after hours didn’t seem possible. But did it! I called the office and the answering service paged the doc. He immediately called back and explained the necessity and potential risks of doing something versus doing nothing. Turns out, knowing more about the big scary procedure was a huge relief, and we managed to get some sleep night.

Fast forward to 8am Friday, after driving two hours. The first doctor I got to speak with was a sleepy intern. I think he was a little confused about my chart because he thought my bilirubin was normal. I did a double take because I know my numbers. No worries, though, the attending physician got it all sorted out. I gave them my MRCP disc, just in case they hadn’t seen it (my GI doc had reminded me three times to bring that with me).

Then the usual interview with the anesthetist:
-First rodeo?
-No; colonoscopies. Propofol?
-Yes.
-Make sure it doesn’t burn?
-We’ll use lidocaine.
-Cool. Don’t forget to wake me up.
-LOL

They wheel me over to the room where the procedure happens. There are all sorts of gadgets. This place looks legit. Surprising myself, I felt calm. Then the gas mask… Dang.

Anesthetist, the world’s second funniest profession.

I guess they snuck in some laughing gas.
Brain makes laser beam noises? That ain’t funny.
Fight the fumes…
It will be okay… sleep soon…
fight the fumes… fight… f…
…
It’ll be okay… sleep soon? Is it okay?
Yes, welcome back. It’s okay.
Did Biden win?

Thank God for my wife, my gem. I have all the feelings right now. Localized stricture in the common hepatic duct, balloon dilation, stone removed, temporary plastic stent placed. Segmental biliary strictures all over the place (left, right, intrahepatic). We’re waiting for cytology results today.

A few observations:

  • I didn’t realize how dark my urine had gotten until cleared up later that day.
  • Some people are natural helpers. I think more often, there are people want to help, but don’t know how. The important thing, I think, is that they ask.
  • My workplace may or may not be supportive. I emailed my boss (and only my boss) this link: https://www.pscsupport.org.uk/know-someone-with-psc/ – this might have been a mistake, but we’ll see… I’m hoping she’ll be supportive.
  • Does anyone have suggestions on how to handle co-worker curiosity? There are a few co-workers that I want to share my diagnosis with, but I really don’t want the whole office to know. I also want the rest of them to cut me some slack and wear a mask.
  • A global pandemic is a crappy time to have procedures. If you can, please ask your neighbor to wear a mask. We’ll get through this together.

That’s all for now. I’ll post my cytology results if appropriate. Other topics I’m interested in: at home DNA research (23andme, Promethease, etc.); vegan and vegetarian diets; life transitions and mental health; VR/AR app development (Unity 3D, C#); job hunting/networking (does anyone work in hospital IT? I think I’m going to put my resume out there).

Stay safe,
MBLand

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MBLAND,
Thanks for your post. I’m glad you were able to get your ERCP and find some relief. Make sure they take that stent back out or replace it within a few weeks. You mentioned Charlotte. I was listed there as my secondary listing for liver transplant. The transplant team there were excellent. If you do find yourself eventually needing to get listed I’d suggest a secondary listing at Duke. That’s where I ended up getting the call that saved my life. You are on the right track and hopefully have many good years ahead without too many problems. Stay on top of your blood work at least every 6 months for now. It’ll increase as your MELD score goes up over time. I’d encourage you to use one of the transplant hepatologists as your primary liver doctor instead of your local GI. Your hepatologist at CMC will be able to get you on the transplant list a lot quicker if you allow he/she to manage all your PSC liver care.
Let us know if we can help in any way.

Mark
PSC 2011 / Liver Transplant 2015

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Thank you, Mark. Yes, CMC seems like a good place. The Charlotte traffic is not fun, but I guess it’s all about timing against the rush hour. My wife and I are hopefully moving at the end of this winter, and kind of have a blank slate. We’ve been looking at Denver and Washington state (Seattle or Spokane). It seems like life is telling us to move somewhere with really good liver doctors.

Re the stent, right now the plan is to remove it after 3 months. My next appointment with my hepatologist at CMC is next week. It’s a virtual appointment, thankfully. I should have a better sense of the plan then.

Re the bloodwork, yes, my GI doc has been on top of it for a while. A stroke of good luck was that we saw the spike in my ALP a few days before the jaundice started. I just wish there was an easy way to get blood drawn other than going to a lab during a pandemic.

It’s all a bit overwhelming and scary to me right now. I still haven’t heard back on the cytology results, just hoping and praying this is going to be a good long fight with a transplant many years from now. I’ll keep working on the things I can control and accept the things I can’t.

Stay safe,
MBLand

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Good news, my cytology results came back with no evidence of cancer :sweat_smile:

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Also, just a correction to the first post, apparently there was not single stone but instead there were some flakes.

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Hello MBLand
I am still in my early stages of PSC, but believe I have had it for more than 10 years. High bilirubin has always been a little high around 2.0.
I do not have too much experience except for several MRCPs and ERCPs. They always go smooth and easy.
My best advice is this board. It is a wonderful life line. Stay connected, share, ask for advice, and be willing to help others.
My prayers are coming your way…

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MarkR,
Glad you are relatively asymptomatic. Shows how individualist PSC is. I only lasted just over 4 years before a tx was needed.

Hope you keep on doing well.
Jeff

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What is your status now? I had the same procedure done back before 2004 and no other stent put in. The curious thing is they never took out that stent in my case and it probably just passed.

What happened to your stent?

Hopefully, things are back to normal for you. That one procedure really helped me immensely.

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I’m scheduled to have the stent taken out on Feb. 5. I’m hoping things will look better and maybe I won’t need another for a while. My symptoms are pretty mild since the stent: some fatigue, occasional feeling of tightness or pain under the ribs, but no jaundice or itching :slight_smile:

I’ve heard of people having stents put in that get forgotten about. I wouldn’t be surprised if they slip out on their own every now and then.

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MB, glad you have some relief after your ERCP.

I usually looked forward to life after an ERCP; it usually meant several weeks of fewer symptoms.