Hello Megafauna, how are you? I do hope that you are keeping well.
The good news is that I finally have results from my cardiac mri - no sign of amyloidosis, and my blood tests seem negative. However I do have some coronary artery disease and may yet need a stent.
On the downside, a liver mri found a rare bile duct disease thought to be of autoimmune origin called Primary Sclerosing Cholangitis. There is no cure or treatment other than liver transplant. It also massively increases the risk of bile duct cancer, and they look similar on mrcp, so I have just had a second scan to monitor any changes closely.
Thankfully I have found a good hepatologist/gastroenteroligist who has experience in managing patients with this disease. I haven't had a liver biopsy or ercp yet, as he explained there are risks.
I feel a bit like a ticking time bomb right now, but try to find small joys in each day to be grateful for. So although it seems that I don't have amyloidosis, I really do appreciate connecting with you here. Unfortunately we have both been dealt some not so good cards on the health front.
