"There's a myth that anyone who has a liver problem has brought it on themselves" This quote is from a Crohn's disease patient living with a blocked portal vein hoping for a liver transplant (Independent 31st Oct 2010)

Tuesday, 7 December 2010

:) Smiles=8 ....... :( Frowns=2

Appointment went very well. I’d been squeezed in to an alternative clinic at Congleton, whose ‘hospital’ is more of an outpatient and minor injuries extension to Macclesfield. As I sat down the previous patient came back saying “well he was really nice”, so I was buoyed up before we started! I was seen bang on time.

Caravan went through the pathology report with me. For the cancer recurrence he set up tumour marker and liver function blood tests for February and May (3 monthly)which can be done by my GP – excellent :) And arranged a CT scan for March, to be done at Macc – excellent again :)
He asked if I was aware I’m listed to go on a clinical trial if I need chemo post-surgery. This is the STORM trial, running since 2008. As there is still no proven chemo for Hepatocellular carcinoma, 2 pharmaceutical companies are testing patients taking Sorafenib long term. There is a known risk that 50% of patients who have undergone surgical resection will see a tumour recur within 3 years and 70% will see their tumours return within 5 years. Compare that with breast cancer where it’s more like 25% risk of a recurrence after 10 years and 33% after 20 years. For those wanting to be around long enough to raise their kids to adulthood 5 years sounds a welcome gift for 30%. As in one of my earlier posts, surgery only gives the chance of a ‘cure’ for a few years where the Childs Pugh score is A. Caravan confirmed I’m an A at the moment.

We went through my Hepatitis blood tests. He still feels that Hep B is the most likely cause of all the problems, including the persistent inflammation. It’s down but not out. My body has done well to suppress it without medication into a dormant state, :) but there have most likely been flares in the past and will be in the future. Clinically he treats when it’s active, so for now we rely on 3 monthly monitoring. All my tests currently show that I am ok, including my weight going back up, and there is no indication I need medication. :) The clinic scales logged 9st 3lb with shoes and winter woollies. Fatigue and muscle weakness come with the territory, :( and I must from now on pace myself.
Asking about work he recommended I have a phased return of a few hours each week increasing slowly.
He looked at the notes I’d made about autoimmune hepatitis but hadn’t seen the result of the ASMA test so wrote that into my file. I was relieved to hear him say that the pathology specimens will have been frozen and are kept ‘for years’. He'll get them and look at them himself, specifically for Hep B and autoimmune. This is excellent again, exactly what I was hoping for, as it means no need for a risky biopsy and we should get a diagnosis. :) That’s twice he’s shaken his head at the suggestion of a biopsy – he’s definitely the man! He'll write to me with his diagnosis when he has looked at the tissue sample.
He corrected what I thought he had told me earlier; I’ve not had Hepatitis C :)
I definitely don’t have Hepatitis D :)
He’s booking me in for an endoscopy :( I really don’t want to undergo this but will from now on be scheduled for one every 2-3 years. A life threatening side effect of cirrhosis that I know about, but have pushed to the back of my mind, is oesophageal varices. The cirrhosis scarring prevents blood from flowing through the liver. Extra blood flows through the veins of the oesophagus instead causing the veins to balloon. If these veins rupture, they can cause severe bleeding (hence the patients on House MD who spectacularly vomit blood!) There are treatments to prevent and/or deal with this. His speciality is endoscopy, he’s done 1,000’s, runs courses on them and has written a manual for nurses, but it will still be a first for me.

After a 20 minute run through everything I feel
confident he is the right person to be looking after me at the moment.

No comments:

Post a Comment