Good and bad

[Porphyriamaniac]

Hello all, Hope this finds you as well as you can be? I've not been around for a bit, I'm studying and working and been practically living at the hospital what with treatment, and poorly grandma's on both sides. The grandma from previous posts with liver disease passed away sadly, it was a shock , and extra scary to me with the liver element if it. I've completed my treatment for now, my ferritin is at maintenance levels, 51 to be exact, so no more blood lettings till at least mid Jan! 😁 it was hard towards the end, my veins have had enough and it gave me terrible headaches as it got lower and lower but best of all my alt dropped down to a normal 51 for the first time in 3+ years! 🤗 It can take a few months for clinical remission, but hopefully by next summer I won't be covered in blisters and hiding like a vampire 🧛‍♀️🧛‍♀️, im still under Dr evil at Leeds and haemo at local hospital and im waiting to see gastro dr to talk about my liver, I would like monitoring annually or similar, just because of increased hcc and cirhossis risk. So good news and bad news really. Love to you all, Hope you have a lovely, healthy, happy christmas. Stacie. Xxxx 🎅🎅🎄🎄🎁🎁

britishlivertrust.org.uk/li...

[Hidden]

Stacie,

Health, it’s definitely a game of snakes and ladders. Good news on the Ferratin, do your veins get a Christmas break? Mine will go into flight mode one more time on Friday. Thanks for the heads up on the annual MOT, I need to organise my GP one.

Have a great Xmas and hopefully an improved 2019,

My very best to you,

Mark 🌲🦌

[Porphyriamaniac in reply to Hidden]

Hi Mark, thanks for reply 😊, nobody usually bothers! 😂 probably as I never really ask questions, I post like a blog to myself and any future porphyria sufferers who may happen across me and my posts, as I struggled to find anyone to talk to. It also helps me to see how far I've come, I started here for advice on fatty liver, a lot has happened since then. My veins are fine with blood tests but are scarred from weekly venesection needles 😒, they weren't so great to begin with truth be l told. Hope your check up is good,n I think 2019 will be better! Love and best wishes to you and yours. 😉 xxxx

[Hidden in reply to Porphyriamaniac]

All the very best to you xx

[Porphyriamaniac in reply to Hidden]

Same to you Laura 😁 I hope you have a great Christmas and New 2019. Xxxx