I would appreciate the group thinking of me next Friday morning when I go in to Duke for my 5th ERCP since diagnosis. I think I have felt the worse this time around than the other times. I am really hoping this will last longer than the last one (only 9 months ago). When the bile doesn't flow properly as you probably all have experienced the bowels just don't work right. My system goes from one extreme to the other the last few months. I'm tired of all this but endeavoring to be patient and continue in hope. My living donor should get the final word next Tuesday or Wednesday and then we will have to decide when we would exercise that option. My MELD is currently 15 but of course that doesn't mean too much with PSC. I wish UNOS would consider giving extra points to patients with PSC. It would certainly make cadaver donors available sooner than when you are almost dead yourself waiting for that MELD to climb. Thanks!
Good thoughts your way and hope the ERCP makes all the difference for you. Do you notice more itching, perhaps orange urine? How are your platelets? Have you written about your living donor process at all on this forum? Questions, questions.
Thinking of you for sure, Mark! Just curious, are you having stent(s) placed during ERCPs? Stents have been keeping me going and bile flowing reasonably. Stent change every 3-4 mths. Had ERCP #19 (aaak!) last week. Frequent ERCPs not great... but when stent has not been replaced, within a few weeks will obstruct so would rather be with than without.
Thanks for the post Alix. Regarding stents, I've used the same surgeon every time to do the ERCP and he is very hesitant to use them unless absolutely necessary. I know every doctor will approach it differently but I've never had a complication with the procedure with this doc as he does this every day of the week at Duke so I trust him. I've asked him multiple times about using stents, but he just doesn't want to do it. I'm glad for you though and I'm sure it gives you a much better quality of life. For as you well know, when the bile doesn't flow right, you seem to be either constipated one minute and have diarrhea the next. It's a see-saw effect for me for sure. You have to plan everything around the restroom needs it seems when it gets real clogged up. Take care.
So with your ERCPs is dilatation done? Stents do carry their own set of issues - like bacteria colonizing. I have frequent, brief (usually 1 day) cholangitis episodes, 5 so far this year.. not so good.
I actually haven't had bowel issues when bile not flowing right or even during cholangitis or obstruction episodes. Perhaps with my secondary sclerosing cholangitis (secondary to autoimmune pancreatitis), there is less bowel involvement than with primary.
Good point Alix. Yes, balloon dilation is done with my ERCP's. There was one time he was unable to cannulate my main hepatic duct and had to go back in a month later and it finally budged where he could dilate it.
Mark
Alix said:
So with your ERCPs is dilatation done? Stents do carry their own set of issues - like bacteria colonizing. I have frequent, brief (usually 1 day) cholangitis episodes, 5 so far this year.. not so good.
I actually haven't had bowel issues when bile not flowing right or even during cholangitis or obstruction episodes. Perhaps with my secondary sclerosing cholangitis (secondary to autoimmune pancreatitis), there is less bowel involvement than with primary.
Thank you Mmonas. I do hope your daughter's ERCP goes well for her. I know it's scary the first time around, but if you have an doctor that does these advanced procedures on a regular basis odds of any complications are greatly reduced. Please know that this is nothing compared to just an upper GI, this is way more advanced and complications can be introduced, but unfortunately it's about our only stop-gap method for any relief until transplant is possible. I'll be thinking of her.
Mark
Mmonas said:
I admire your courage. My daughter is about to undergo her first ERCP.
Just to give you all an update. My ERCP went fine on Friday. Went through it well although I'm quite sore from it all. He was able to dilate the ducts. My PSC is significant and my MELD is now up to 19. He also did an endo-ultrasound and they have ruled out any mass or cancer which I am thankful for. He did take brushings of my ducts and has sent those to Mayo Clinic for analysis just to be on the safe side.
Thanks again everyone for your thoughts and prayers for me. We should here this week if my brother is accepted as a living donor.
I am right there with you. My doctors in Wisconsin won’t let me have a half liver which puts me in a predicament. The regional board allocated me exception points for my extreme pruritis. Evidently my itching is the worst case they have ever seen.
I wish you luck with your transplant. May Gods blessing be upon you.
UNOS is playing with the lives of PSC patients with their dogged commitment to "no exceptions" for PSC patients. I hit this frustrating wall when my MELD rose no higher than 16, even though I had been hospitalized 9 times with liver failure and was told that only 15% of my liver was viable any longer. My pre-transplant team were preparing a letter to request an exception be made for me, based on my medical condition. UNOS told them to save the paper and postage: it would not be considered.
MELD was developed based on alcohol and hepatitis C liver cirrhosis. PSC is a choleostatic disease that develops differently from all the others, yet has the same fatal results. UNOS needs to make changes in order to serve those of us who have/had PSC. I was in my final months of life when I received a living donor liver. 31/2 years since transplantation I am doing fine. Don't wait as long as I did if your PSC is getting very bad. Investigate living donor to see if it is right for you.