@rosemarya thank you!

Yes, I was the first patient in South Australia to have a liver transplant to treat Hilar Cholangiocarcinoma. Whilst I am forever grateful, I also know they have limited local expertise on which to draw as no one has gone before me.

I am under the care of a hepatologist and more recently have been seen by dermatology, respiratory, infectious diseases, haematology, nephrology and rheumatology. However, they are all focussing on their own specialist area and the hepatologist is not considering the big picture but is relying on each individual team to work things out. I see this as a significant risk.

I asked if my progressively worsening state could be a paraneoplastic syndrome (rare I know) and he shut me down immediately, telling me that the "transplant coordinator are quite emphatic that this is not cholangiocarcinoma recurrence" . I wish I was reassured by his authority.

However, whilst the hepatologist seems quite able to tell me what it's not, he and others are unable to actually tell me what it is - so if they don't know what it is - then how can they so emphatically tell me what it is not when they can't explain what is happening.

The orthostatic hypotension is new, as is the tachycardia. His response was to send me to a hypertension clinic - rather than consider this as part of other symptoms, blood results and PET/CT findings.

I am very frustrated as I feel the clock is ticking and any small chance to get on top of whatever this is, is being lost.