Thank you Colleen. I was diagnosed with Secondary Sclerosing Cholangytis (SSC) in March 2020 at age 60. This was caused by septic shock, the result of a completely blocked gallbladder. I had, liver, kidney and pancreas failure within a matter of hours.
They told my wife I would most likely not survive. It happened so suddenly and without warning. Like a time bomb. Prior to the gallbladder attack, I had been perfectly healthy.
Well - the first miracle was I did survive! But the septic shock resulted in loss of blood flow and oxygen to my liver, and caused scarring of the biliary ducts within the liver.
The liver is the only organ that can regenerate - but as I learned, the biliary ducts cannot regenerate. So my sclerosing cholangytis was the result of the organ failure.
Unlike PSC, SSC is not an auto-immune disorder.
It’s very rare, as most people don’t survive. In fact MGH only sees this diagnosis very rarely, and several of the doctors at Mayo had never seen my diagnosis. The second miracle was I received my transplant last February. I had probably 5-6 dry runs between MGH & Mayo before receiving the perfect organ.
The dry runs are very difficult emotionally. Thank goodness I had a very supportive caregiver, family and friends who helped me maintain my sanity.
But that is now all history as I feel wonderful - finally!

I am just so thankful to have my health back. I had several complications post transplant, but the excellent doctors at Mayo are on top of it. I am so thankful and hopeful that I can return to a mostly normal life in a few more months.

So - Ginger - hang in there, keep a hopeful attitude, join the support group and you will find many people who have been down this road and can help you and your husband maintain his health and attitude while you wait for the perfect donor.
Gerry