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Primary Sclerosing Cholangitis (PSC)
Transplants | Last Active: Jun 10, 2024 | Replies (93)Comment receiving replies
My daughter has just been diagnosed with this illness. It is also known as PSC. A couple of years ago her liver enzymes became erratic. This past fall, the readings were too eratic and her BP suggested she go to a gastroenterologist. She has had every test imaginable and her liver biopsy confirms this diagnosis. Of course I am heartbroken. She and I have read everything we can find on this. Now it is a reality and I feel frozen. I do not know what I can do. I want to load her into a plane and go to the Mayo Clinic. At this point, I do not think they would even deal with her. Can anyone give me some insight on this diagnosis and/or their experience with Mayo and when they should be contacted. Immunology has become a treatment for cancer, has it been tested on this disease? She also has Crohn’s disease.
Replies to "My daughter has just been diagnosed with this illness. It is also known as PSC. A..."
Hi, sandyjr. I would like to reach out across the miles and offer my hand, my ears, and my willingness to walk with you and your daughter.
I know exactly how you feel right now. I was diagnosed with PSC in early 2000's, and i also had the elevated liver enzymes, the endless tests, and procedures to determine my diagnosis. I know your heartbreak and your fear.
For right now, your daughter is doing the right thing by being under the care of a gastroenterologist (GI). He/she will be the one to keep watch on her condition as he initiates routine check-ups. Mine were scheduled with labs and visits every 4 months. When my PSC began to develop to cirrhosis, he referred me to the transplant center in my home state. By knowing that she has this disease, she can begin now to take action to practice healthy living. Healthy eating, physical activity, avoiding any alcohol, asking GI about over the counter medications are some that come immediately to mind. By being proactive in her health care she will be best prepared for whatever lies ahead.
Crohns Disease is common with PSC.
The PSC Page that Colleen shared will give you a view of the depth of research that is happening.
How is your daughter dealing with this diagnosis? How does she feel healthwise?
Hi, Sandy!
I was diagnosed with PBC (primary biliary cirrhosis) in 1992 at the age of 48, solely on the basis of elevated liver enzymes. A liver biopsy was done to confirm the diagnosis and stage the disease and returned positive for cirrhosis. At the time I lived near Chicago, so had good medical care available and the GI guy started me on methotrexate which had been one of the Mayo protocols for treatment and I understand has since been discredited as a treatment for PBC. Nonetheless, due to the drug or by coincidence, the enzymes began to fall and slowly, very slowly, returned toward normal. It turned out I had a heavy autoimmune component to my disease and it progressed very slowly, allowing my liver to accommodate and I had 25 years of extraordinarily good health while being followed for PBC. Eventually in 2017, a couple lesions showed up on a routine MRI which turned out to be hepatocellular carcinoma. That's when I first reached out to Mayo and it was the best decision of my life. First they took care of the cancer and then did a liver transplant in November of 2018. I could not have wished for better or more compassionate care.
I am doing well and hoping for many more good years. I hope this offers you some hope for your daughter. I'm now 74 years old and have led an active and full life; thanks to the Miracle of Mayo it has been extended. My best wishes for you and your daughter.
Sharon
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Hi @sandyjr, I moved your message to the Primary Sclerosing Cholangitis (PSC) discussion in the Digestive Health group so that you can meet other members talking about PSC, like @rosemarya @jacinta @monty49 @sandyblair and @jenchavez. Many have been treated for PSC at Mayo Clinic.
You might wish to also follow the PSC Page by Mayo Expert on Connect, including clinical trials and treatment advancements: https://connect.mayoclinic.org/page/psc/
You can call Mayo Clinic any time to inquire about seeking a second opinion and treatment options. No obligation. Sandy your daughter can self refer to Mayo or get her specialist to refer her. You'll find the contact information here: http://mayocl.in/1mtmR63
It is such a shock to receive a diagnosis like PSC. We're here to offer a virtual hand, answer question where we can and direct to resources that might help. Sandy, may I ask how old your daughter is? Does she live close to you?