Hello from Victoria, MN

hi, my name is Nora and I was diagnosed with PSC last Wed Oct 25. I am 42 years old. I have been married for 6 years, and my husband (Matt) and I have three beautiful kids (Emma 4, George 2 and Elise 6 months old). When I was pregnant with Elise I had my first gallbladder attack. That was Oct of 2016. The second gallbladder attack came in January, and by February (at 28 weeks pregnant) the gallbladder came out. After an overnight stay at the hospital to make sure the baby was ok, I was sent home. Only to come back the day after as the pain continued. After an MRCP it was discovered that I still had some stones inside that needed to come out. The MRCP also showed some questionable tissue and it was recommended that after the delivery of my baby to get a second MRCP. At the beginning of October I finally got the second MRCP done and the results were consistent with the first one. PSC.
I took the day after I was diagnosed to grief the news, and now, my husband and I are starting to work on the path forward. I have an EGD and colonoscopy on Wed. I have also gone ahead and schedule an appt with a hepatologist at the Mayo Clinic.
I try to remain positive and continue to make lemonade with the lemons that came my way :slight_smile:

I look forward to embark upon this journey with all of you.

2 Likes

Welcome to the club, Nora. Sorry you have this to deal with.

You’re right about making lemonade. Psc is a rollercoaster that at some time, will try your patience, your flexibility and your sense of humor. Having a strong mental/positive outlook will go a long way towards coping/dealing with psc.

It always helped me to focus long-term, but you still have to get though the daily “stuff”, too.

Hey Victoria.
I am also newly diagnosed and will keep track of your progression. I have my first hepatologist appointment next week which of course will see him reverse the MRCP results and say it was a big mistake. :slight_smile:

Hope things work out well in the long run and you have a long a fruitful life “drinking that lemonade”, which will taste all that sweater.

Hi Nora, Hang in there, it really isn’t the end of the world. I was diagnosed in 2010 and am still living a normal life aside from a few flare ups from time to time. Progression is different with everyone. Get your rest, eat a healthy diet, exercise and keep a very healthy positive outlook on things…and pray…and that’s all you can do…and lets all hope for more research and new drugs and treatments for this disease…Dave

Welcome Nora to our family of PSC patients. I’m glad you found us and if there’s anything we can do to answer any of your questions, provide more information, etc. please do not hesitate to ask. There’s a wealth of information on this site and from the members who participate on this forum. We look forward to hearing more from you as time moves forward. Take care.

Mark

My family and I live a bit up the road in Minnetrista. It’s been about 6 years since I was diagnosed. If you ever need a question answered feel free to send me a message or just post it here. All the best. G

Thank you! I am going to Mayo tomorrow. I am bit anxious at the moment, but looking forward to the next steps.

Thats one of the best places to be! Im going down to the Mayo on the 22nd. Lol. Mines a seperate issue, I was diagnosed with a Kidney stone last wednesday and it still hasn’t passed. Eeerrgghhhh!!! Haha. Hopefully they break it and it passes, I have too much stuff to take care of before Turkey day. I hope your trip is a success . All the best Grant

Nora, what did they say/ I hope you got good news.