Clare’s story

Well back in January 2013, I decided to change my life, I was unhappy with my job and my marriage, I got a new job and I separated from my husband. I’d made a decision to get healthy, started eating healthily and exercising, everything was going well, I loved my new job, I even met someone new who was so loving and made me feel alive again.

The first thing I noticed were spots breaking out on my chin, they were a nuisance at first but then they became much worse, I’d feel like my face was filling up with poison, I had cream off the doctor and several courses of antibiotics so now started on a low dose of antibiotics, they helped a bit.

I was starting to get frequent uti’s and at one point I actually had blood in my urine, my urine was very dark, my GP wasn’t very helpful, saying she thought I was the worried well and she wasn’t bothered by the colour of my urine. By now I’d lost quite a lot of weight and gone from a size 16/18 to size 10/12, I thought I had willpower of steel!

Most days though I felt really sick and I couldn’t eat very much, I couldn’t eat chocolate or drink coffee because it made me feel so ill. I developed really bad heartburn and would be awake for hours at night, I went to the GP again and again, I was told not to eat certain foods and take antacids.

My eldest son had said to me a few times that I looked yellow, I couldn’t see it but went back to the GP again, I told her what my son had said and she said no you don’t look yellow, I still had heartburn, I was so exhausted, felt so sick, couldn’t eat, very dark urine, pain in my tummy, I’d lost 40lb in weight, my friends were shocked at how I looked. The GP decided to test me for coeliac disease, before I went for that blood test my eyes swelled up and had a yellow tinge to them, I went back to the GP again and I was asked if I was down, I said the only thing that’s getting me down is feeling like this! The GP expanded the blood tests, I had them done the following day, it was a Tuesday morning. Tuesday evening I had a phone call to say go to the GP the next morning as my blood tests came back really abnormal, I was referred to the local hospital for an ultrasound of my liver but the day before, I woke up jaundiced, feeling so sick and had a rash across my chest, I went to A&E at Leicester Royal Infirmary where I was kept in, put on a specialist ward and had lots of tests.

The liver specialist told me I think you have autoimmune hepatitis; I had to have a liver biopsy but before that I had to have a transfusion of plasma as my blood wasn’t clotting. I was started on a high dose of steroids after the biopsy; my ALT level which is supposed to be under 50 was over 2,000.

I’m doing much better now, although the side effects of the medications are not nice, luckily I have an understanding boss and my family have been great; I do miss the old me and wish I could get it back.

I had a Fibroscan in July 2014 which shows I do have fibrosis, it has been a life changing diagnosis for me and lots of people do find it hard to understand.

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