New Member...A little about me

I am a 39 year old woman from the Boston area who currently is pre-transplant PSC with Pancreatic Divism, sphinter of oddi syndrome and has had my common bile duct reroute hyper y due to damage from PSC. I am also being tested for IBS which I am pretty sure I have had for years.
I was sick at a young age and had off and on symptoms starting at the age of 5. These were from my Pancreatic Divism. As I got older, in my 20s, I began to have common bile duct and liver issues. Mostly stones, infections, damage to my common bile duct and scarring of the internal ducts. Many hospital stays, ERCPS, gallbladder removal, stints, splicing of my sphincter of oddi, etc later, finally in 2014 everything went south starting with when I had my common bile duct hyper y reroute which they initially blamed from my liver damage and stricturing only to realize 6 months later as my liver got way worse, it was PSC and I have not been able to get back to my normal life since. Not that any of us probably even know what normal is anymore. Between itching, URQ pain, fatigue, nausea, cant eat most of the time, dizziness, jaundice and the 2 million other fun times PSC brings us.
I am a mom and my daughter is my drive to life. Without her, having this crappy disease, I know that I wouldn’t fight the way I do. When I cant muster the energy to move from fatigue, pain or am itching so bad that I bleed, when I am discouraged, depressed and feel like all hope is lost, she is what motivates me to get the strength and faith to move ahead.
The first thing I learned after the initial shock of being diagnosed which frankly, devistated me, like Im sure it did to each one of you. I thought my life was over. In a way, it was. Its truly a grieving process we all need to go through. I had a hard time and still do at times thinking about the future, my daughter growing up…will I be there? It still can make me depressed so this is when I learned that taking each day min by min is crucial to living with PSC or any chronic illness for that matter. It was a blessing in one way only. To at least finally know what the hell was wrong with me. I do know that family and support are vital to survival. Without it, I dont think I’d still be here.
I was misdiagnosed for many many years. I am and was symptomatic for years and was already progressed in the disease when initially diagnosed in 2015.
Sometimes I think we all can feel like were in some sort of weird limbo and a bad groundhog day scenario over and over. It can be trying as you all know.
I am meeting with a dr who specializes in PSC finally. Part of my current issue is that for years I did not get the care or medical support I needed due to the lack of knowledge on the drs part. I am happy that I can have hope that this new Hepatologist will be able to help me either get on clinical trials, alter my current treatment to actually help me or start looking into the transplant process. Its definitely not easy finding a GOOD dr who knows PSC.
Unless you can actually find a good doctor, I truly believe that it can alter not only your physical outcome but your emotional stability as well.
No one likes a dr telling you after trying an internal biliary drain as a way to help your current blockage situation, "Sorry you’re not responding to any treatment or interventions so there’s nothing more we can do for you. See you in 3 months!"
When you already have issues finding hope, this is definitely not what you need. This was not surprising to me after how hands off he was and how listening wasn’t his strong suit. It was as if it was painful for him to treat not just me but the PSC in general. Im tired of feeling like I am my only true advocate as the medical community from my personal experience has not been the most informative, supportive or compassionate. Ive had ER drs just come straight out and say, “Liver disease huh? How much do you drink? You dont look like a drinker” You just expect more from the medical community. I go to a big Boston hospital which is another reason why my expectations were high and I did not expect this unprofessional reaction. I am trying not to be tainted by medical professionals but its hard at times. Im sure each one of us has had problems finding the right doctor, a bad ER experience, issues with staff, etc, all related to having PSC. I am holding onto the notion that I just need to be in the hands of the right doctor and need to accept that there will be ignorance in this world and the medical world is not an exception to this rule.
So onto my next chapter! New, very highly recommend by PSC patients, PSC Specialist at a new Boston hospital and hoping for a new direction. I know there’s currently no cure for PSC (but new promising trials are in the works from what I’ve recently read). I just don’t want to be in a position where death is at my door when I could have had better options but I am realistic and know its a possibility. Scares me more than anything however, you cant knock a girl for wanting to have hope for something better than this.
We all deserve something better than this.
I am very grateful for groups like this. Without them I certainly wouldn’t have received all the important information on PSC from others experiences, articles, etc. Plus the support from others who know what youre going through is priceless.
Sorry for the long intro…its hard to consolidate so much when nothing with this disease emotionally or physically is ever black or white.

Thank you for sharing your PSC story with us. I hope the information you find here will be of help and we invite you to feel free to respond to other posts you see here. We all learn from one another even through our struggles. I do hope you are under the care of a transplant hepatologist and not just an ordinary GI doctor. With PSC you really need to have a good hepatologist caring for you primarily as they are the experts with liver disease. Welcome once again and thanks for your post.

Mark, Moderator
PSC 2011 / Liver Transplant 7-2015

Hi Avagos,
I’m sorry you’ve had such a hard time, it sounds like it’s taken a lot of pain to get to this point for you. I really sympathise with you in terms of dealing with doctors who jump to conclusions and don’t offer support. I’m in my twenties and in the past year when I presented to the emergency department in extreme pain (pre diagnosis but knowing I had “some kind of liver disease” for the past five years according to my doctor) I was treated as either a poorly informed person or a hypochondriac for suggesting I had liver disease. Very very frustrating time for me and my family. Not all patients are relying on some obscure website they’ve found online! If my experience has taught me anything it’s that half the time some doctors barely know about PSC and what it can do, to an extent we have to advocate for ourselves! Stay strong, and take each day as it comes!

What you are going through is part of the curse of having a rare disease.
It can be very trying, emotionally, financially, to find the right doctor to get the right diagnosis that lead to the right treatment.
With psc, I have learned you have to have a sense of humor and to focus on the long term. If you don’t have either, the day to day stuff will grind you down, but you still have to wade through it.