Hello comrades.
A little about myself. I’m 47, have had colitis for 39 years and psc for the last 10. Been in and out of hospitals like you all. As we all know this is a dogfight.
Had a blockage in the bile ducts a couple weeks ago and had stent put in and taken out and ballon inflation. Bilirubin was over 200 now it’s at a little over 100.
A question I have is how long does it usually take for the bilirubin to get to a normal level?
Thanks so much and I remember you all in my thoughts.
Hi Buco,
Thanks for the post. Sorry you are dealing with a blockage but it’s par for the course with PSC. I noticed a decrease in bilirubin closer to normal range within a week after ERCP. Hopefully they won’t leave the stent in too long because it can clog up as well and cause you more problems. Have you run your MELD score lately? That would be helpful information if you can share that with the group. I’m glad to hear that although you’ve had PSC for 10 years, things seem to have progress relatively slow which is good. Take care.
Mark
Hi Mark. Thanks for the kind words. It’s wonderful to connect with people who have this disease.
The stent was take, GI inflated the ducts. I have a apt with the liver clinic next week to follow up. The bilirubin is around a 100, last week it was 200.
One day at a time.
I will enquire about a meld score. I was unaware o this.
Take care Mark.
Buco,
Go to this web site and plug in your most recent lab numbers. This will be a good guide as you move forward to keep an eye on your score. MELD calculator - OPTN
Mark
I have had several stints in before transplant.
What Mark said is exceedingly important, know what your MELD score is sooner rather than later (in my case, I waited WAYYY too long to understand what this meant and dealing with end stage liver disease).
This is important for a few reasons, one is to understand the level of disease you have (how the doctors see it basically) and where you are on the pecking order for transplant. Sadly, this disease has but few treatments some that can manage symptoms but none outside of transplant that will fully abate the disease. It’s also important to start early on understanding how transplants work, from living donor to cadaver livers, which is really all based on where you live in the US. Understanding how this works now will save you a lot of grief, especially when you don’t have the energy to deal with it later on.
Back to your question. Bilirubin is tricky sometimes, I found it would normally start to lower once an ERCP or stent procedure was completed, but in some cases, this didn’t happen. Ultimately, it was a losing battle and the only option was transplant. I think I had 6 stents in (maybe more, I had so many ERCP’s at the end that they all blended together). I think my highest bilirubin was 243, which was a couple weeks before transplant. I looked like a banana in clothes.
Good luck and hope the number comes down.
Hi wqc. Thanks for replying.
I have a appointment at the liver clinic this Friday and will be asking what my meld score is.
I’m in Canada so I don’t know how the transplant procedure works, I’ll ask about that too and keep everyone posted.
Thanks again and good health to all.
Thank you fcmmark. All the best
You have certainly come to the right spot for advice from first hand survivors of this nasty disease.
My past is similar to yours. While in the USMC, I was diagnosed with UC (1988). After battling UC for most of my adult life, I was diagnosed with PSC in 2010.
My PSC stayed pretty much in check with meds until 2020, when after returning from living overseas in Korea, my numbers started jumping (all the bad ones that is).
I was told in September of 2020 that my liver was failing. I had exhausted using stents in the bile duct (no longer helping) and my body, both externally and internally, was deteriorating fairly
rapidly.
In late October 2020, I went on STD from my work after being told I was being placed on the transplant list. My MELD score was hovering around 30 at that point.
November, then December came and my MELD score continued to rise into the lower 30s. By January 2021, I kind of resigned myself to being a goner, yet continued pushing myself along despite the lack of energy, bright Orange color and maddening itching from the bile.
In Late January of 2021, I went in for what I thought was a routine lab draw, only to be called about an hour later while with my son at the grocery store and told to return to the hospital immediately, as they were going to admit me. My Bilirubin at that point was 14.7 and my Alkaline Phosphate around 933 if memory serves me. My MELD score I was told was 42, which surprised me as I had in my mind 40 was end game.
I got really lucky, as after being admitted on a Monday, and making my way to the top of the Midwest transplant list thanks to the MELD score, as thatTuesday night they told me they found a liver and I’d be operated on Wednesday morning.
I will not get into the details of the recovery, not an easy surgery, and you feel like you have been rebooted like a computer, but coming up on 2 years since the transplant and I’m doing amazing. Every lab I have done these days is in the acceptable range. My Bilirubin is 0.8 and Alkaline phosphate 128.
Biggest advice I have is do not get despondent or lose hope. Reach out here if you need someone to talk to, as this is a community who’s members have really been through the same things you are battling. I know Mark and Jeff helped me immensely to understand the transplant process, and gave me hope knowing they had been through this before me.
Stephen