I am a mother of two children, a 7 year old daughter and 2 year old son. We enjoy a very simple life as a family. During weekends we go out for lunch and a spot of shopping treat for children. Our life consists of keeping our children happy and spending lots of time with them.
My story of my liver transplant was quite spontaneous and there was very minimal time to even comprehend the impact of it all. It took place after me and my husband celebrated our 10th wedding anniversary. I suddenly lost my appetite during mid january 2015. My symptoms were very vague at the start with the feeling of nausea and the thought of eating filled me with dread. On a normal day, I'd look forward to eating and enjoying my meal like many people. This went on for a week until I contacted my GP who said it could be a virus just taking its time to clear out of my system. I knew deep down that it cannot just be a virus because physically I was starting to feel different to what I usually do. I was tired and I had extremely bad itchy skin. I'd scratch all night but there was no relief at all. I contacted the GP again and this time it was someone different and not a locum. She told me to go in for a blood test however she believed I had gastritis. She told me to eat bland food and wait it out. I was still vomiting even after 3 weeks and called my GP again and she put me on a triple drug therapy for some stomach bacteria. This cocktail of drugs included two different types of antibiotics and acid blockers. It still didn't help and my condition was getting bad as vomiting would not stop. My stomach would burn and I'd need to vomit to feel relief. Slowly I started getting heart palpitations, I felt scared and I couldn't sleep at night. I felt unusual joint issues. After a month of being so unwell I was still eating ryvita and boiled egg and drinking water. I could not keep anything else down.
My uncle, my dad's younger brother suddenly passed away during all this chaos. He was suffering from a rare lung condition called Idiopathic Pulmonary Fibrosis. He was only 50 years of age but we knew he did not have long left as the prognosis for this disease is not good.
A day after his funeral, I felt really uneasy. I still had the vomiting, unusual muscle sensations, and heart palpitations. However that day I woke up feeling very restless and scared. I could not lie down or sit down as I felt very agitated. I kept pacing up and down the house and hoping my children would not notice my behaviour. That day was very hard. I was very confused and my behaviour was very erratic. My mother and sister had to come down from Cardiff and they came and found me shivering and confused. My mother hugged me and everyone just put it down to me being dehydrated. They fed me and made me drink fluid.
A few days after this incident the surgery called to tell me that my blood results were back and that the GP needed to see me. When I went in she told me that my liver function test was very high and that the vomiting and loss of appetite explains this. She felt I had a virus and organised another blood test in a few weeks. I told her about my confusing episode and she put it down to depression and anxiety. I was not happy though because as much my daughter's challenges upset me, I never feel depressed. She put me on some anti depressants which I took for a few days but I knew I was not depressed so I stopped it.
I was still feeling anxious, emotional and the heart palpitation and restlessness was not leaving me. I couldn't even sit down without feeling all these symptoms. I had to go to my parents just before my daughter's half term because I felt sad. When I came back I had a blood test which again showed very high liver function test. The GP booked me in for a quick ultrasound but it showed nothing.
It was only in March when I was about to go to my parents that I decided to go back to the GP because my urine at this point had turned red. I thought I had a UTI. I also felt I looked yellow. As soon as I went into the nurse' office, she said I looked very yellow. She took a urine sample and was surprised at the high traces of bilirubin. She made me sit in the office while she went to the GP and explained who said that I need an urgent blood test and I was to come back in a few hours. I came back and was told I needed to be hospitalised and seen by a hepatologist.
I went to the local hospital while my children stayed with their aunty. I was in the local hospital for 6 days and managed to have a CT scan which showed inflammation of the liver. However tests for hepatitis came back negative. Again the hepatologist put it down to a viral and sent me home on the condition to come back for regular blood tests and a follow up in a month.
At this point I was still vomiting and was not able to eat. When I went to the hospital the hepatologist apologised and hospitalised me again. This was hard because this time I was in a hospital half an hour away from home and my children. I was there for 7 days and the liver doctor there put me on steroids and attempted a biopsy which was not successful. My liver was deteriorating even more rapidly and u started having low sugar issues. I'd suddenly feel weak and would need to eat fast. Eventually the hepatologist could not offer me any further help and he transferred me to the liver unit at Queen Elizabeth hospital.
The first evening I was there, I was happy. Happy because I'd get some answers. However that night when I saw the registrar I realised how serious my health was and he mentioned transplant. This is when I felt very scared because to me transplant meant that I was nearly dying, my liver was going into complete failure.
I felt very depressed that night and I felt I will not make it. This is when I started thinking about death and the future of my family. How would my children survive without me? How would my husband manage? How would my parents handle losing their eldest daughter? How would my siblings manage without me? Those thoughts kept me up until morning when I started getting chest pains. The nurse did an ECG on me and results were fine. However I was not. I went to the bathroom and felt sick. I came out to find the junior doctor sitting next to my bed. I felt restless. I wanted to vomit and I remember the doctor asking me if I felt pain. I didn't want to speak at this point and kept telling her to leave me alone. She kept on asking questions until I felt angry and stood up and straight away collapsed. I could hear the rush of feet in the background and the machines they were attaching to me. I just remember thinking about my children and my parents at this point and trying not to close my eyes.
They gave me oxygen and controlled my BP which decreased very fast. There were about 10 nurses and doctors in the room. They all kept me talking because I wanted to fall asleep. They said later had I gone to sleep, I'd have gone into a coma because of my liver issues. Later I was transferred to the ITU and I was there a few days. The doctor there told me that I was either going to get out of there with a transplant or with my own liver and good treatment. My family were told to arrange good care for my children as I was there for a long time.
I cannot imagine what my family and my in laws felt during this time. They were scared but so strong for me. They really gave me a lot of encouragement especially my parents, sister and my eldest nephew who was there from the start to the finish line! I have a large family so I had a lot of my uncles, aunts, cousins and friends praying for me which gave me tremendous strength.
I will continue with the rest of story in another blog as this one is getting long. I really hope my story will raise awareness and people that suffer from these symptoms will seek help sooner and that the hepatologists will be more quick to diagnose acute liver failure patients.
