I had two more ultrasound scans. One showed some cysts which apparently are not unusual. A GP said I had a fatty liver which upset me. I had an MRI scan and then saw a surgeon because they thought I had had a gallstone pass through the bile duct and there could be more. I had several hospital appointments and was getting weaker and weaker requiring a wheelchair when I got to the hospital. I wasn’t eating and was under the care of a dietitian who prescribed food supplements for me, but I was losing weight and was seriously underweight. The surgeon and anaesthetists hummed and har d about removing my gallbladder given my physical condition and my chronic asthma. They decided against removal. I had an ERCP this is where they lay you on your stomach a put something similar down your your throat to a gastroscope but it has tools on the end which cut slits in your bile duct to hopefully aid the passage of stones and biliary sludge. At some stage I had another gastroscope which showed a hiatus hernia and erosion in my stomach caused by the beginnings of stomach ulcers, but I didn’t have helicobacter pylori which can cause stomach ulcers. I was prescribed Omeprazole which is a proton pump inhibitor. Basically it tackles acid reflux which can also cause stomach ulcers. Confusion was about to set in….
My liver function tests were all over the place. I was being seen at the local hospital by a Gastroenterologist who thought my problem was mainly anxiety! I was anxious and had panic attacks for years and would shake a lot. Along with the differences in liver function tests my jaundice would improve or get worse again. I went to A&E twice only to be sent home. Then my liver function tests went up wildly and stayed there. I saw the Gastroenterologist and she had me admitted to hospital. My eyes were yellow too. There was no bed for me apart from in a surgery pre-admission ward where I was treated very badly. I felt very ill but strangely had little pain. The charge nurse wanted me to take paracetamol but I didn’t want it. I was afraid that I had already poisoned myself with it. I wasn’t sure but I thought maybe I had taken a bit more than I should. I was given oramorph which zonked me out. At least I could escape where I was for a while in sleep. I was expected to wash myself most of the time or shower by myself. I could hardly stand and thought I might collapse. One very kind nurse would walk me down to the toilet in the morning as I shook. My gums bled profusely and I would look in the mirror and scare myself. I had stopped taking my antidepressant because I thought it had made me jaundiced. I was to have the most horrendous withdrawal symptoms. The noise from visitors seemed to get dimmer then louder and the banging of doors and lockers would make me jump.
Eventually I was moved to a geriatric ward. Fewer people but very scary and very ill people. Opposite me was a poor lady with dementia. She had at one time been a very beautiful woman, but something very wrong had happened in her life. She would scream at the male nurses. She wouldn’t even let them take her blood pressure. She took a shine to me and wanted me to come over and talk to her. She didn’t realise that I was so ill I could hardly stand. After a few days they moved me to another geriatric ward. I had to witness and hear elderly and not so elderly people scared and dying of cancer. The withdrawal symptoms were worse I’d wake up in the morning seeing double.
I was told I would be having a gastroscope. I would psyche myself up. It was put off and put off. Eventually it was done by a doctor with a very shaky hand which was a worry but proved to be better than a subsequent gastroscope. I was then discharged. I was still very ill. My poor husband thought I was better I was not. Worse was to come.
The doctor came to see me at home I had been sick in bed it was all water as I had been drinking loads. I couldn’t eat and was having about two spoonfuls of soup and leaving the rest. I was passing dark brown urine so I went to see the GP she sent me for an ultrasound it was agony. The results would not be sent to the surgery for a week so I saw another doctor who felt my liver and said it was enlarged. I was more or less teetotal and I certainly am now. He sent me to hospital and the first question I was asked was had I got a will. My poor husband looked scared to death I just kept on cracking jokes. They tested me for everything under the sun including HIV. They said the jaundice could be caused by a virus or illnesses I had had even as a child. I was then sent home and told to come back in I think it was two weeks time. It’s a bit hazy so much has happened and there’s another reason why I’m not sure of the order of things which I shall explain later. When I went back they said they didn’t know what was wrong all the tests were negative.
It all started in 2016 shortly before Christmas. My sister phoned me. She happened to say, ” How are you?” I told her I didn’t feel well, which I didn’t. Even my voice was week. I struggled with Christmas. We then had our 40th Wedding Anniversary in January 2017. We had a special celebration with all the family. I nearly didn’t get there as I felt unwell. I didn’t eat the food. The next day I woke up and my skin had gone yellow. Continue reading
It turns out that I’m rather ill. Sounds as though I’m sorry for myself, but that’s not the case. I have a rare autoimmune disease called autoimmune hepatitis. It is controlled by steroids and other autoimmune suppressants. The one thing I’ve learnt is that I’m never doing anything I don’t want to again. It’s not the only thing I’ve learnt. I don’t mind saying I’ve been through hell, but learnt that I am much stronger than I thought.
I have given up selling my poetry books because the taxman has taken most of the little I earned. At nearly 66 I can do without filling in the self assessment forms. It just wasn’t worth it.