I'm so glad you feel better about getting the (non live) shingles vaccine.
I started getting sick last June and thought I had food poisoning (diarrhoea and nausea). Got better, then was really ill last August. I live between the UK and Bulgaria and was in Bulgaria when I got really sick so had no access to medical treatment. It was a pretty rough month, couldn't eat as everything got 'stuck' and at one point couldn't even keep a mouthful of water down. Couldn't stay awake for more than a few minutes and when a friend visited about 3 weeks in to me being really ill, her first comment was that I was bright yellow. Started to pick up again and went back to London in September for a course which I wasn't able to attend as I spent the week in bed sleeping. Picked up again, returned to Bulgaria, was okay for about 3 weeks then the fatigue and nausea started to come back. I went back to London end of November and got a blood test from my GP as I really thought I'd picked up some bug I was having trouble shaking off and maybe needed an antibiotic. As well as my ALT, my AST was 1,903, Bilirubin was 159 and a couple of days after the blood test I had a call to go straight to A & E where they said they were admitting me to hospital. Awful experience in hospital as I didn't look or feel sick, just felt a bit under the weather, so had patients and nurses questioning why I was there - I kept asking if I could be dealt with on an out patient basis but was told by the doctors that my liver could fail 'at any time ' and then I would bleed out, so I had to stay near the medical / surgical team.
My ALT started decreasing on its own without medication over the 2 weeks I was in hospital - from 1,553 to 892 but unfortunately I wasn't told this, I was just told I had to start on prednisolone at 40mgs and was then discharged.
I flew back to Bulgaria 9 days after the biopsy and went straight back to work (I work from home mainly)
I had quite a healthy lifestyle before the diagnosis - I had a stroke in 2007 so cleaned up my eating and stopped smoking then. I don't drink alcohol and haven't for pretty much all of my adult life as I just don't like the taste. I think the only real change is moving to oat milk instead of cows milk. I have quite an active life as my garden in Bulgaria is quite large so I try to grow as much of my own food as I can - a couple of weeks ago I cut down 3 dead trees and I'm still able to carry 25kgs bags of cement and have a few DIY projects on the go 🙂 (I turned 60 in March so I don't think I'm doing too badly).
So, in many ways I'm one of the lucky ones as I've not had to make any real changes to my life other than get my head round taking medication at different times of the day.
How have you handled being told you have a serious disease when you've not had symptoms? I'm really struggling with this as for me, sick people should look and act sick and I don't.
The worst bit has been the side effects from the prednisolone as I've felt worse from that then I did when I was admitted to hospital last year. Dr wanted me to stay on 10mgs pred for life but I was again extremely lucky as the British Gastro Society released new guidance for AIH on 1st April to say if numbers return to normal within 6 months of diagnosis, that patient should be weaned off pred over the next 3 months. Today is my first day at 2.5mgs. So far, apart from right shoulder pain, no liver issues.
I do have what feels like never ending nausea which I'm guessing is from the meds but I'm using it to my benefit as I still have a few kilos I need to lose and the nausea helps me not to snack 🙂
So, oat based products instead of dairy (dairy apparently adds to inflamation), no alcohol or smoking. Small meals during the day as opposed to 3 main meals as the liver processes food and doesn't like being hit with a large amount in one go. Make my food from fresh ingredients - nothing pre-packed or ultra processed. Lots of exercise doing things I enjoy and if I feel tired, I take a nap. I try not to sit still just watching TV for too long as I find being inactive can make me feel fatigued. Only one coffee with caffeine in a day as when I was drinking more, my blood pressure rose (thank you pred for encouraging this) - BP is now almost back to normal now pred dose has decreased. Oh, and I am now usually in bed by about 10.30pm as I've found if I stay up later, I'm tired the next day. I'm always up by about 7am. And I like drinking water with fresh lemon juice in it - good for liver and tastes nice. I don't add sugar or salt to food and have started experimenting with alternate sugars in baking. And during my initial month of prednisolone 'euphoria' I bought a bubble massage jacuzzi which I am now thoroughly enjoying using 🙂
Please tell me how you managed to accept the diagnosis when you've not had any symptoms. I just really can't get my head around being told I'm 'sick' when I actually feel fine and I don't see myself as a 'sick' person.