I am in California diagnosed in 2004 with autoimmune hepatitis caused by sulfa antibiotics. Stable on meds until 2010 when generic meds triggered liver failure and was put on liver transplant list with meld of 36. No compatible donor (California). In two years tests started improving and liver enzymes went to normal. I had been on steroids and immunosuppressants for years and had severe side effects. Over the next 12 years dealing with declining health medication related and had 2 major relapses of the Autoimmune Hepatitis. In 2023 at a routine MRI for the liver a dilated pancreatic duct found. Several MRIs, CA19, 2 endoscopic ultrasounds, 1st with fluid biopsy of suspicious cells and the 2nd with tissue biopsy from a cyst in the head of pancreas that was 10mm. I meet with surgeon recommending Whipple procedure and one month later told I’m not eligible. There is not a conclusive diagnosis of cancer. The liver transplant team informs me recently that I’ve been removed from transplant list because as a result of the tests for the dilated pancreatic duct I am now considered high risk and no longer eligible for transplant. After 20 years of doing everything to be healthy enough for a transplant, I am stunned that I am told any treatment if conclusive diagnosis of pancreatic cancer offers no surgery, chemo, radiation and because pancreatic cancer meds to the liver and mine is stable albeit compromised that I am no longer a candidate for transplant. I, too, feel like they wrote me off in a nano second and told me to “live each day” as no options with this medical center.
I am encouraged that you went to Mayo and everything changed and that is the best outcome. I am considering a 2nd opinion at Mayo. I am still reeling from the lack of concern from clinics I have been to for 20 years. I would be interested to know the process to get evaluated at Mayo. I am so happy that you received a transplant and you did not give up.