Hi everybody! My name is Kayla, I was diagnosed with small duct PSC a couple about a month ago. I’m 23 years old and before this I was healthy I lived my life regularly. I got sick and ended up in the hospital for about 2 weeks. They did an MRCP and it came back negative but liver enzymes were still trending up (ALKPhos-570, total bilirubin-5.8, AST-214, ALT-251) so they finally did a liver biopsy it came back positive for small duct PSC. I couldn’t keep any food down and after an ERCP they dilated the opening to my stomach with a balloon pump. I am able to eat now and I am home. I feel better but I’m really tired all the time. I read online having small duct PSC is slower progressing but I will still need a liver transplant. I also read that having an uncommon blood type could get you on the list faster (mine is B-) my doctor said my MELD score was a 13 when I was in the hospital but I’ve read on here some of you have gotten on the transplant list with a MELD score of 16-18. It’s not that I want a transplant but sometimes I wish it could happen sooner rather than later because all I do is think about what will happen the next time I get sick. Does anybody have any advice at all they could give me about this? They did check for Chrons and UC and I luckily don’t have either, however they said that could develop.
It’s not all doom and gloom, small duct PSC usually develops very slowly with only a small %progressing to large duct PSC.
I have spoken to many specialists in this field and they all said a vast majority of people live a full normal life span with no medical intervention.
Obviously this varies case by case but that’s what studies show on it so far.
Kayla, I was diagnosed with small duct PSC 15 years ago, and have lead a pretty normal life with only 3 'flare-ups". Try to focus on the time when you feel good and enjoy life! I do know the dread of ‘when will it happen again’, and I do think stress is a factor, too, so I have found yoga to help me stay balanced. Hope this helps and the best of luck to you.
I was diagnosed 9/2008. My complications seems to happen within a period of time. My first five years was traumatic for me. Many ERCPs, pancreatitis, lethargic, painful RUQs. But my last episode lasted between April 2018 to December 2018. It began when my temperature shot up to 102°, so I was hospitalized. All liver enzymes test increased, during the time stints were placed, more intrahepatic structures were discovered. I also became anemic of which I received 2 rounds of iron-infusions. Last, discovery during this time UC and ulcers in my colon. Within 3 months, strictures were removed. This cycle was done overall 3 times. I’ve been doing ok ever since. Again, my flare-up comes randomly, before 2019 episodes it was 2015. I’m not on any meds, no alcoholic beverages, non-smoker and pescatarian.
Unfortunately, this disease will vary for each person, definitely cannot compare to another.
If you ever get a chance please attend a PSC conference. They are so insightful and you meet doctors, caregivers, and other people with PSC. Conferences are normally scheduled during the spring.
I pray this helps and our personal experiences expands your knowledge of how finicky this disease can be but WE do our best to stay strong and positive.
Thank you to everybody who responded so far! Do you know where I could find these conferences? I’d love to attend one, i’m sure my mom would like to go with as well I think it will be very insightful for us. That is also my worry that eventually I could develop UC or some other sort of problem in there. The past few days have been rough I was doing fine I’ve been out of the hospital for about a month and then all the sudden 2 days ago I started vomiting again after anything I eat (I don’t eat greasy or sugary foods at all anymore) I also have not drank a single drop of alcohol since the diagnosis and this time I have no fever not sure what is causing this to flare up again so quickly. If symptoms persist and I am not able to keep anything down for days I will go back into the hospital but that’s really the last thing I want to do. Trying to stay as positive as I can. Thank you again to everyone who’s responded so far I appreciate you all!
Hi Kayla, you may never need a transplant and it’s always better to keep your own organs. So don’t get on proactively. My 23 year old was diagnosed with PSC/UC at age 15. She takes oral vancomycin and still has a completely normal liver and colon. Here is her story: https://gostanford.com/feature/indomitablespirit?utm_source=fb-organic&utm_medium=commpost_2019-05-09_1A2B4C&utm_campaign=lacrosse_otherpd_feature__
You need to be your own advocate. If you want information on oral vancomycin let me know and I will email you current papers and summaries of these papers.
Welcome back, Tracy.
You’re right to try to get a lot of info about psc, for knowledge is power, and it can take a while to wrap your mind about what psc is, what it does and what can be done about it.
You pointed out a conundrum that drove me crazy: is it better to hope for a transplant quickly but that would mean ones health would deteriorate quickly or hope for a transplant in the far distant future but that would mean dealing with symptoms that would likely appear more frequently and with a greater chance of cancer? That is a tough question to answer and we will all answer it differently for our own reasons.
Having a less common blood type can work in your favor. I have B+, and so less common also. Fewer livers available, but then fewer people needing them.
This is a link to a good psc conference: http://pscpartners.org/upcoming-conference/
One of the best things pscers can do is go adjust mentally to the disease. Yes, it progresses slowly (mostly) but we have to be ready to handle any symptom when they arise. PSC will test your patience, your stamina and your sense of humor.
Most transplant centers will list you when your MELD hits 15, and most seen to transplant in the upper 20s or higher. The MELD will fluctuate with each blood work.
Hi Jeff! I’ll try to be more active…crazy life.
I wish you much happiness and prosperity in the new year.