Back to the ward after ITU....

Sorry I had such a long break from my first post. I am still adjusting to life after a transplant and the medications leave me quite tired by the end of the day! I will continue with my journey from ITU to the transplant in this post.

A few days after my visit at the ITU, I was transferred back to the ward. The consultant at the ITU had said we could either start the process of putting me on the list or try out some other drugs to see if it made a difference to the liver. One thing all the specialists were surprised with was my liver function results which were so high and my physical health. My results indicated that I should have been experiencing more episodes of encephalopathy and not even standing still. They tested my hands a lot to see if they were flapping or not. When the liver fails, our hands get weak and when you stretch it out, it starts flapping. Amazingly, my hands were strong, I was able to still walk, talk and was still somewhat aware of my surroundings.

Once I was transferred on the ward, I was put on Azathioprine via IV. My INR was stable for a few days. I was still being tested for many other conditions such as Wilson's. I was being prepared for another biopsy too but this time they were prepared to use a lot of blood clotting products to make it successful. Unfortunately, I still could not eat and I was on tube feeds. I was still vomiting.

I felt really depressed with the tube in my nose because my daughter who is now 7.5 years old was tube fed for the first 4 years of her life. I remember being told that it doesn't hurt to have the tube put it in and once it is in, you cannot feel it. I felt it alright! I couldn't lay down comfortably because the tube would make me gag at certain angles. This experience made me cry a lot because my daughter definitely felt it and I knew why she cried a lot now. I was the one that used to put in the NG tube through her nose as it had to be changed so regularly.

Anyway, after 4 days of Aza, my INR starting increasing sadly. The biopsy sadly didn't show any answer apart from acute liver failure or seronegative hepatitis. I started getting confused due to encephalopathy. It was very difficult for my parents to see me suffer and see me so vulnerable. I would feel really sad when they'd come in and see me lying down like a vegetable. I started suffering from hypos as well due to low sugar problems. I'd just become drowsy and sweaty. During these times, they'd give me a glucose stick and rub it in the side of my cheeks. At times I was aware of my surroundings and other times I would be drowsy for hours and pretty confused.

After 6 days on Aza, I was told my INR was increasing very fast and my mental state was very bad. I would try to message friends and family but I'd forget who I was messaging and what I was even typing. I'd get frustrated and put my phone away. The specialist was keeping an eye on me and he came in to ask me 'how is your whatsapping going?'. He knew I was confused and couldn't remember much and I admitted that to him. They did another test which showed my results had deteriorated and I was very confused due to the toxins. This is when they came in a huge team with so many specialists to say, I had very little time left. Maybe a few days to a week but they didn't think I'd make it to a week. They said I'd have to be put on a super urgent list as I needed a transplant as soon as possible and before my INR reached so high that transplant would not even be an option by that time.

All I remember was that I was on my own. I was trying to ask questions but I couldn't even speak. Tears were streaming down my face. The consultants were very kind though. One of them held my hand and told me to cry and let it out of my system. He asked me what I was worried about and I said my children. Would I make it? How long would I have after a transplant and what were the risks that came with it? I just remember blurting out that my daughter needed me and I needed to be healthy to get back to her. The doctors just said, i should let my children and family come to see me that day. I knew why. They were worried I'd run out of time. After the consultants left, I drew the curtains and just cried. I didn't know who to call because I couldn't remember how to even use my mobile. However, I managed to call my best friend. I'm not sure how I managed to bring her number up but I did.

My mother came in the afternoon to find out the news. She was amazingly strong. She cried but she made me have a shower. Brushed my hair. That day my sister said that one of my friend from college was travelling down to visit me. I remember not wanting to see anyone because I was in a very horrible state. I came out of the shower and my mum brushed my hair and as I sat down, she came in.

It was amazing to see her. That day she made me laugh so much after such a long time. She reminded me of all the silly things we did in college and we just laughed. I remember my surgeon coming in to meet me and because I was forgetting things, I made her take in what he said. She was amazing and truthfully, seeing her really made me more brave and courageous.

In the evening my in laws, my father, my children had all come to see me. I prepared myself not to cry because I didn't want my daughter seeing me so sad if that was going to be the last time she saw me. As it was she was finding it difficult to comprehend why I was in hospital with IV and tube in my nose. My son, he was too scared to come near me. That was very difficult. During their visit the transplant coordinator came to meet us to sign papers and to discuss the risks and possibility of me falling more ill before there was an available donor. 

Saying good bye to my children was probably the most hardest test! Keeping the tears in was very difficult. But I managed to keep it in and managed to tell my daughter that she wouldn't be seeing me for a very long time. I had already decided that my children will only see me once I've had most of the tube removed and a little better after the surgery. I really hope no one ever has to go through such a stage in their lives. How do you say good bye to two little children that have no idea about what is happening to their mother? 

After being put on the super urgent list, I fell more ill. I was so confused and started imagining things. There were times I was very delirious and imagining conversations. I remember when all my cousins came to visit me, I apologised to them in advance in case I said something wrong. I was extremely tired by then and I just wanted to sleep.

The nurses looked after me so much. I had my favourites who knew me as the trouble maker on the ward because of the first day I collapsed. It was their hand over time and they were about to go home but couldn't quite make it out of the door! They'd really cheer me up and make jokes and laugh. I was still walking to the bathroom in the corridor because I was too stubborn to use a comode. I felt refreshed when I could get out of the ward and just walk in the corridor.

I do remember crying a lot though because I didn't think I'd make it for a transplant. My sister would really try to lift my mood and my dad would always be confident that there will be a donor. It was a very puzzling time because to find the gift of life, someone would have to lose their life. Even then, I kept praying for a longer lease of life for the sake of my children. 

After a day of being listed on the super urgent list, I was transferred to the higher dependent ward because of frequent hypos and encephalopathy. When I was put on that ward, I remember asking the nurse to help put the TV on for me so I could see Kate Middleton as she had a baby girl. I had forgotten how to use the TV and so the nurse helped me. Before I could even watch the news, I went into a hypo and I was drowsy until early morning. I remember seeing another patient who asked me how I was and she knew my name. I was with her another room but to this day I cannot remember which room. There are certain things I have forgotten but certain things I can remember.

That afternoon, I was transferred back to ITU because they said my health was very bad and if a donor didn't arrive, I may be put on life support machine to keep me stable. I had said good night to everyone. I wasn't allowed to get out of bed without any assistance that night. The nurse washed me and put me to bed. I had started bleeding from many parts of my body because of high INR. As I drifted off to sleep I was woken up by liver pain for the first time ever during this ordeal. I remember crying in pain and the nurse said that I was not allowed any pain killers as it would worsen my liver. I was still drowsy but I could see the team of liver doctors right in front of me saying that I needed a transplant very soon. I was in pain but I was also crying because I was missing my children and family. I was also praying a lot. Next to my bed, I had another man who was Bengali. He could hear my painful screams. He asked his nurse I'd they'd check on me even though my nurse was with me. Around 12am, the specialist came to tell me there was a liver but they would have to test to see how healthy it was. However it was a match. The tests took quite a few hours because it was at 4am they came and confirmed that the liver was healthy and the transplant would go ahead in the early hours. I felt sad that someone had lost their loved one and didn't feel like it was right to feel happy. However I felt at ease hoping that I would get better. After the news, i managed to talk to the patient next to me. He was such a lovely man as he again motivated me to feel positive and to believe that I will go home back to my children. 

My whole family including my eldest uncle, my grandmother, aunty, parents, sister, nephew and husband came early to visit me before the surgery. By that time I did feel more hopeful but it was hard trying to stay strong and smile through to the operating theatre just so my family members would not cry especially my parents. So much was going through my mind but I just remember not dwelling on it much. Just before I fell asleep I remember the surgeon telling me that the liver was healthy and that was that. The next time I came around was a few days after the surgery.

This so far was my journey towards a transplant. That had its own challenges. When I woke up, I was faced with new challenges and obstacles to over come. Transplant path is never easy and I've never anticipated for such a tragedy to take place in my life. I felt that the biggest test for me was bringing up my daughter. How wrong was I, little did I know that we had another big tornado entering our lives. All I can say is thank you to all my family members and friends from the bottom of my heart. Your prayers and positive thoughts kept me going. Your messages and visits were always close to my heart. It kept me fighting to overcome this ordeal. Thank you to everyone that helped me through life after the transplant and who are still helping me. My parents, my siblings which I love dearly! My sister for putting up with my requests and orders (the only time in my life I got to boss her about!), my 3 brothers who I love so much, my husband for putting up with my mood swings and driving up and down, my in laws who took in my children and looked after them. My eldest nephew for coming to hospital every day and discussing my progress with the doctors, my uncles and aunts and my beautiful cousins, all my relatives and my beautiful friends who to this day still keep a close eye on me through messages and calls. I'll never ever forget the support.

The picture below is when I was transferred to Queen Elizabeth Hospital where I had jaundice and I was swollen.

Introduction

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.