Hello Everyone,
I am new to this support group, and thats exactly what I’m looking for, support. I have felt really alone through this whole diagnosis because I don’t feel like anyone understands. Here is my story, thank you for listening (I apologize that it is long, I just have a complicated story):
Back in 2012 is when it all started. A simple day of trying to get through my college classes turned in to excruciating pain that wouldn’t go away no matter what I did. 5 days later, and a whole lot of pain meds in the hospital, I found myself being taken to the operating room to have my gallbladder removed. After this experience, I hoped that I would never find myself in a hospital again.
It was only 8 months before I was back in the hospital. It was the matter of 3 hours from when the pain started to me barely keeping consciousness as the ambulance arrived. This time it was Pancreatitis, caused by the narrowing of my common bile duct. This earned me a 2 week hospital stay. It took me having to fire the first doctor who said “lets wait and see” and a week before the new doctor ordered an MRCP, which led to an ERCP. After the ERCP, I instantly felt better and couldn’t wait to go home. I didn’t know at the time that PSC was even a possibility. My mother didn’t tell me, until much later, that the specialist who performed my ERCP, who had a terrible TERRIBLE bedside manner, had taken her aside afterwards to say (and this really what he said) “Your daughter has a liver disease that will require her to have a transplant in 5 years. Have her come to my practice and we will talk more” and proceeded to walk away to his next case. Imagine, a mother of a 20 year old hearing this, no explanation. No nothing.
Fast forward through a relatively normal 3 years that included multiple GI appointments, colonoscopies, and a misdiagnosis of Chrons to November 2016. A random fever, and overall exhaustion, that had gone on for far too long sparked a trip to my new PCP, who just so happens to be the doctor that got me out of the hospital the second time. Side note: I really owe everything to her. She’s saved my life… My liver enzymes have always been mildly elevated since the second hospital stay. But all of my other doctors never really thought anything of it. We decided to run some random blood work to see if we could find the cause of the fever, and sure enough, my liver enzymes had jumped almost 50 points in a month. Every one knows the process, abnormal blood work leads to ultrasound, which leads to MRCP. Ill never forget the call from my doctor. “…I’m sorry. Its PSC.” My heart sank. She proceeded to read me the MRCP report, but of course I didn’t even process what she said. I was just numb. I couldn’t even ask her what I should do.
Its been a year since my official diagnosis. Only my family, my boyfriend of 4 years, and a few close friends know what is going on with me. I now have a specialist in Boston who I see every six months or so. I had an ERCP back in May, and after 6 months, my fever broke. I was feeling better for awhile, but recently have started feeling badly again. My fever is back, I’m exhausted, and I’ve been having a really hard time with food. Seems like more often than not, I have an achy uncomfortable pain following a meal. (Is this normal?) I haven’t experienced any itching yet, guess I’m lucky there.
I just had my yearly blood work, MRCP, and colonoscopy. Guess the symptoms came back just in time. I meet with my specialist next week and hope that everything is looking okay. My blood work has never been indicative of the severity of the stricturing within my liver, just imaging. So we’ll see what he has to say.
Sorry for the lengthy description, and I thank you for taking the time to read my post. I am looking for support through all of this because its hard to talk to someone who doesn’t understand. I’m looking for advice, how to manage the exhaustion, and even how to cope with this. I’m only 25 years old, and hope that I am strong enough to get through this. I know it has been a year, but I still am having a hard time with this. I hope it gets easier.
Thank you again.