"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)

Sunday, 3 February 2013

Hospital update

Admitted Wednesday morning onto a ward called Medical Investigations Unit - which I guess translates into 'we dont know whats up, mind if we keep you here for a bit while we prod and poke you, photograph your insides and shake you upside down to see if any loose bits fall out'.

Had standard blood tests done - liver function, bone profile, what they call U&E which looks at fluid and electrolyte balance.  These came back normal apart from the ALT liver test which is still way too high but down a teeny bit to 616. 
Sent for an ultrasound which came back same day as pretty much ok - no enlargement of the liver, no blockages.  The only new thing was that I had some tenderness and nausea when the ultrasound wand pressed on where my gallbladder/pancreas lay underneath.  Yes you read it right, an ultrasound can be reported on same day, when out in my real world it can take 4 weeks!

Further blood tests taken - Hep B viral load, AFP cancer tumour marker, immunoglobulins.  These have to be sent off to a different lab and take 4-5 days to come back.

Biopsy was planned for Monday 4th, then brought forward to Friday 1st (was just about to eat some lunch when it was whipped away so I could be Nil By Mouth for a few hours), then moved to Tuesday 5th.  I got a sandwich later, never saw the hot meal again, when the Friday slot was changed! 

The MIU closes on a Friday, so a bed is found for me on one of the gastroenterology wards upstairs - L2.  A ward of about 25 but split into bays and private rooms.  I'm in the corner of a 7 bay ward.  Nice staff, clean ward, bedside tv.  Very hot, you go for a shower and then 10 minutes later sweating again.  I'm laughed at for the winter jumper and trousers normal for January in Manchester.  Note to self, take in tropical shirt and shorts instead.  I can just about sleep under a sheet.  The ceiling has air-con fans going round, so at night in dim lighting its like Apocolypse Now.
More NHS food difficult to digest when we are all gastro patients - choices of chips, battered fish, suet pie and gravy, sponge pudding and custard.  Where's the fruit, where's the veg!  Where's the low fat, low cholesterol, high vitamins, low salt, low sugar, decent protein diet we need!  When they weighed me and measured me on admitting, my BMI put me on their 'malnourished' chart, (ha ha ha ha) so I have my food intake recorded each and every day.  "Exactly how much of those two weetabix, milk and spoon of sugar did you eat for breakfast?", "You only managed 3/4 of those 2 rounds of soggy toast, tut tut".  Maybe this is my way in to a referral to a qualified nutritionist/dietician instead of trying to educate myself on a liver friendly diet.

By Friday night we had concluded, well nothing really.  Two possibles: Theory 1 is this could be a flare of the Hep B.  The return of the Hep B viral load will confirm or refute this, but it wont be back til Monday at the earliest.  Theory 2 is this could be a flare of autoimmune hepatitis.  Rather than leave me at risk from the inflammation while we wait for the Hep B result, Dr Al has put me on high dose prednisolone steroids, standard treatment for the acute stage of autoimmune.  With the ALT dropping to 590 as my own immune system tries to deal with it, it was deemed safe enough for me to get a day pass home on Saturday, as long as I returned to my hospital bed that night.  With a first dose of 40mcg prednisolone inside me, its lovely to be home and have some family cuddles.  Have a bath, hairwash, wash and dry my clothes, make a shepherds pie for tea - ooops dont tell Dr Al, I'm probably supposed to be on bed rest.  Back to hospital Saturday with no obvious changes to how I feel except my blood pressure is down a bit and I'm a tad shaky, maybe a bit of housework wasnt part of the day pass plan.  Another dose of prednisolone this morning and home for Sunday as long as I go back again tonight.

Monday should see a ward round by Dr Al and a catch up on 'The Plan'.  Hopefully the missing blood tests and results of more LFTs taken this morning (getting a bit bruised round the wrists and inner elbows now) will be back and a definite decision on the biopsy can be made.  If the Hep B is positive we dont do the biopsy, we review 'The Plan' again.  If the Hep B is negative we do the biopsy to see if it diagnoses autoimmune, and then review 'The Plan' to treat active autoimmune while continuing the treatment I'm on already for the Hep B.

1 comment:

  1. Fiona,
    Wow! Talk about crazy! I'm glad you were able to escape for a few hours any way. I hope you get some answers soon so that you can get back to your family and life.
    Best Wishes,